PP12-II/06
I
S elect C om m ittee of the H ouse of K eys o n V oluntary Eu t h a n a s ia
A ppendices
Table of Contents
Appendix 1 Curriculum Vitae of J F Helps
Appendix 2
List of Abbreviations
Appendix 3 House of Keys Select Committee on Voluntary Euthanasia: Oral Evidence
Appendix 4
House of Keys Select Committee Notice of Invitation for Written Evidence
Appendix 5
Public Written Submissions
Appendix 6 Recent Developments in the House of Lords: ADTI Bill 2005
Appendix 7
Comments from IOM Medical Society Survey
Appendix 8
Copy of Standard Letter of Receipt
Appendix 9 Copy of Postcard from Manx 4 Death with Dignity Campaign
Appendix 1
Curriculum Vitae of J F Helps
Jennifer Frances Helps
Date of Birth 02/08/81 Citizenship British (Manx) Educational Details Establishment From To Natural History Museum/Imperial College, London 2003 2004 Brasenose College, University of Oxford 1999 2002 Castle Rushen High School, Isle of Man 1992 1999 Burgoine Middle School, Potton, Nr Sandy, Beds 1990 1992 Wrestling worth Lower School, Nr Sandy, Beds 1986 1990
Examining Body Subject Yr Grade Imperial College, London MSc in Advanced methods 2004 Distinction in taxonomy and biodiversity University of Oxford BA Hons in Biological Sciences 2002 Class I AQA A Level Biology 1999 A OCR A Level Chemistry 1999 A AQA A Level French 1999 A NEAB GCSE Biology 1997 A MEG GCSE Chemistry 1997 A NEAB GCSE French 1997 A NEAB GCSE Art & Design 1997 A NEAB GCSE Physics 1997 B NEAB GCSE Mathematics 1997 B NEAB GCSE Music 1997 B NEAB GCSE Religious Studies 1997 B NEAB GCSE English Language 1997 B NEAB GCSE English Literature 1997 C Work Experience Organisation Address Job Description Dates Greens Ltd Isle of Man Kitchen Assistant Feb 05-June 05 Arragon Properties Isle of Man Seasonal Gardener May 03-Sept 03 Tropical Biology Association Cambridge Student & Fieldwork Oct 02-Dec 02 Friends Provident Isle of Man Receptionist Sept 02 Lloyds Private Banking Isle of Man Audio Typist Aug 02 Duke Video Isle of Man Researcher July 01-Sept 01 Port St Mary Commissioners Isle of Man General Clerical July 00-Sept 00 Awards Open Scholarship and College Prize at Brasenose College, University of Oxford
Interests My academic interests have included conservation, biodiversity studies and sustainable development. I was the social secretary of the University of Oxford Biological Society (2001-2002). My non-academic interests include playing the piano, dance (Ballet and Manx), languages (Manx, French, Swahili & sign language), scuba diving and travelling. Academic Resume After my secondary education in the Isle of Man (Castle Rushen High School), I took a place at Oxford University to read Biological Sciences. Whilst at Brasenose College in Oxford I was awarded a College Prize and a Scholarship. I graduated from Oxford with a Class I Honours degree. I then travelled to Madagascar where I undertook a research project concerning the distribution and regeneration of Adansonia rubrostipa (Baobab tree). I am currently in discussion with a colleague to publish the results of our studies on A. rubrostipa in this area together. In 2003 I went to the Natural History Museum, London and studied for a Masters in Advanced Methods in Taxonomy and Biodiversity. In the course of my studies at the NHM I travelled to Belize to conduct research and collect specimens and data for my thesis which was titled "DNA-based identification of larvae: an exploration and development of the methodology of DNA taxonomy". This thesis addressed the development of a relatively new scientific concept and explored the methodology, feasibility and ethics of the procedure. I graduated from the NHM (in conjunction with Imperial College London) with a Master of Science with distinction. After completing my studies I travelled throughout Eastern Africa, and I hope to resume my academic studies in 2006. Appendix 2
List of Abbreviations
APM Association for Palliative Medicine ANH Artificial Nutrition and Hydration BMA British Medical Association BME Board of Medical Examiners (Oregon) CCNE National Consultative Ethics Committee for Health and Life Sciences (France) CPS Clinical Predication of Survival DAA Disability Awareness in Action DAD Doctor Assisted Death DHS Department of Human Services (Oregon) DHSS Department of Health and Social Services (Isle of Man) DPP Director of Public Prosecutions DRC Disability Rights Commission DWD Death With Dignity EAPC European Association for Palliative Care ECHR European Convention on Human Rights GMC General Medical Council GP General Practitioner HK House of Keys HL House of Lords IOM Isle of Man LCD Lord Chancellor's Department MHK Member of the House of Keys MND Motor Neurone Disease MP Member of Parliament NCHSPCS National Council for Hospice and Specialist Palliative Care Services NHS National Health Service NMAC Nursing and Midwifery Advisory Council NMC Nursing and Midwifery Council NOP National Opinion Poll ODDA Oregon Death with Dignity Act (Oregon) PAD Patient (Assisted Dying) Bill (UK) PCA Palliative Care Australia POLST Physician Order for Life-Sustaining Treatment (Oregon) RCGP Royal College of General Practitioners RCN Royal College of Nursing ROTI Rights of the Terminally 111 Act (Australia) SAMS Swiss Academy of Medical Sciences (Switzerland) SAPC Swiss Association for Palliative Care (Switzerland) SCEN Support Consultation Euthanasia Network (The Netherlands) TLRAS Termination of Life on Request and Assisted Suicide (Review Procedure) Act (The Netherlands) UK United Kingdom USA United States of America VES Voluntary Euthanasia Society WHO World Health Organisation
Appendix 3
House of Keys Select Committee on Voluntary Euthanasia: Oral Evidence
KCE, No. 1 2004
HOUSE OF KEYS OFFICIAL REPORT
RECORTYS OIKOIL Y CHIARE AS FEED PROCEEDINGS DAALTYN (HANSARD)
SELECT COMMITTEE ON VOLUNTARY EUTHANASIA
BING ER-LHEH MYCHIONE COYRT - GY - BAAS E MYGHINAGH LESH COARDAILYS
Douglas, Wednesday, 5th May 2004
Published by the Office of the Clerk of Tynwald, Legislative Buildings, Bucks Road, Douglas, Isle of Man. O Court of Tynwald, 2004 Printed by The Copy Shop Limited, 48 Bucks Road, Douglas, Isle of Man Price Band E 2KCE SELECT COMMITTEE, WEDNESDAY, 5th MAY 2004
Members Present:
Mr Q B Gill MHK (Chairman) Mr D M Anderson MHK Hon. A F Downie MHK Mrs H Hannan MHK Hon. J Rimington MHK
Clerks: Mr M Comwell-Kelly, Secretary of the House of Keys Mrs M Cullen, Deputy Clerk of Tynwald
Business transacted
Page Procedural...... 3
Evidence of Miss B Critchlow, Director of Nursing Midwifery and Professional Development, Noble’s Hospital.... 3
The Committee adjourned at 11.10 a.m. and resumed at 11.15 ajn.
Procedural...... 11
Evidence of the Dr J Garland, Clinical Psychologist, Oxfordshire Mental Healthcare TYust...... 12
The Committee adjourned at 1236pjn. and resumed its sitting at 2.00 pjn.
Procedural...... 23
Evidence of Mr P Cusworth, Research Officer, LIFE UK, accompanied by Mrs Newton...... 23
Procedural...... I...... 36
Evidence of Mr P G Bryden, Sulby...... 36
The Committee sat in private. Oral Evidence SELECT COMMITTEE, WEDNESDAY, 5th MAY 2004 3 KCE
and Midwifery Advisory Council are the lead nurses in their House of Keys Select Committee own division or section and so that includes Noble’s Hospital, the hospice, the community nursing practice, Ramsey District on Voluntary Euthanasia Cottage Hospital, nurse education on the Island and also the independent sector, and so it is really represented by all the leads in all sectors of nursing on the Isle of Man. The Committee sat in public at J0.05 a.m. in the Millennium Conference Room, The Chairman: How many people would be covered Legislative Buildings, Douglas by those?
Miss Critchlow: There are 11 members, I believe. [MR GILL in the Chair] The Chairman: Eleven members on the Council, and how many nurses would you represent on the Island? Procedural Miss Critchlow: There are around 900 qualified nurses, The Chairman (Mr Gill): Moghrey raie. Good morning midwives and health visitors on the Isle of Man. everybody. This is the first public evidence session of the Select The Chairman: But your Committee is representative Committee of the House of Keys on Voluntary Euthanasia. of the whole spectrum? That is the title that the Committee decided between us, but it is not exclusive to issues of voluntary euthanasia; it is about Miss Critchlow: Yes. assisted dying. But I hope that we can take the title of the Committee as indicative, rather than exclusive. The Chairman: Right. Does that include community Just for introduction and by way of recording on Hansard, nurses? if I could ask Miss Critchlow and other people giving evidence if they could speak as clearly as possible to assist Miss Critchlow: Yes, it does. our Hansard recordings and also, by way of introduction, I will introduce my colleagues: from the far end, John The Chairman: Thank you. Your Council has kindly Rimington MHK; David Anderson MHK; Alex Downie given us a two-page paper which, basically... Would you MHK; I am Quintin Gill, the Chairman; to my right is Mrs like to describe the contents of it? Hazel Hannan MHK; and this is Mrs Cullen, who is the Clerk; and we are also clerked by the Secretary of the House, Miss Critchlow: Yes. As part of our role and, obviously, who is Mr Malachy Comwell-Kelly. in relation to the introduction of this Bill, we sought the opinions of nurses throughout the Island. We asked for their comments in relation to the introduction of the Bill. We had 38 responses from nurses and midwives. There were 37 nurses and midwives that opposed the introduction of the EVIDENCE OF MISS B CRITCHLOW Bill and one nurse supported it I think you also have to consider, in relation to the The Chairman: First to give evidence today - thank individual views of nurses and midwives, the professional you very much for your attendance - is Miss Critchlow. bodies that represent us, which are also important and so we Perhaps if we could turn over to you and ask you to introduce sought the advice of the Royal College of Nursing, which is yourself and your role and your interest in this subject, Miss our professional body and also our professional union, and Critchlow. also the Nursing and Midwifery Advisory Council in the UK, which is our regulatory body and they regulate nursing Miss Critchlow: Yes, thank you. My name is Bev on the Isle of Man. Critchlow. I am the Director of Nursing and Midwifery at The view of the Royal College of Nursing (RCN) is Noble’s Hospital. I also have a responsibility as the Chief that they do not support an introduction of such a Bill. Nurse Adviser and that is to the DHSS. I chair the NMAC They believe it is really contradictory to the professional on the Island, the Nursing and Midwifery Advisory Council, ethics of nursing and medicine and they will not support which is a group of senior nurses who lead and develop the any professionals who practise either assisted suicide or nursery and midwifery profession on the Island. voluntary euthanasia. The Nursery and Midwifery Council in the UK has not The Chairman: Rather than having this in one order put a position statement out, although they consider that or the other, we will just take things as things occur, if that this is still in the legal arena, and it is against our code of is okay? professional conduct, so they will not support nurses who practise either assisted suicide or euthanasia at the present Miss Critchlow: That is fine. time.
The Chairman: If we are popping at you from different The Chairman: Can I just ask you two questions on angles, I hope it will be alright Can I begin by asking: when that, please? The numbers that have actually responded out you say ‘senior nurses’, what definition is ‘senior’? of 900 or so is 38?
Miss Critchlow: All of the nurses who are on the Nursing Miss Critchlow: Yes, it is about 4 per cent
Procedural House of Keys Select Committee on Voluntary Euthanasia - Evidence of Miss B Critchlow 4KCE SELECT COMMITTEE, WEDNESDAY, 5th MAY 2004 Oral Evidence
The Chairman: Do you want to offer an opinion, if Mr Anderson: If, for example, the Isle of Man did bring that is...? in some legislation, there would have to be some sort of guidelines put down then, would there, for the Isle of Man, Miss Critchlow: I think there are a number of reasons for separate from NMAC? that, really. I think it is a difficult issue for nurses to consider and it is one that they are not considering in their professional Miss Critchlow: Yes, I spoke to the Nursing and arena at the moment It may be due to just general apathy Midwifery Council in the UK on this. It is not a flexible really, in all fairness, or it may be that it is a professional organisation, really. It provides a code of conduct across the and ethical dilemma, that they really do not want to address board and they said, unless UK legislation was to change, at the moment this is not on their agenda. I asked what if Isle of Man I did ask nurses about that, and they really did not feel legislation was to change and they said, ‘Well, effectively that they wanted... I do not think they believe it will become you are governed by UK legislation. Nurses and midwives' a reality, in all fairness. That was the general opinion. are governed by UK legislation, really, and we could not see a way round that’ The Chairman: When you say the RCN, I think certainly you mentioned, will not support members, what does that Mr Anderson: Thank you. mean in practice? M r Downle: Could I ask, would it be possible, Miss Miss Critchlow: Really, I suppose it means that they Critchlow, to have a copy of the codes of conduct and the would not support them when, and if, something goes professional standards? wrong, and they will not support that practice. The Royal College of Nursing produces professional standards and Miss Critchlow: Yes, I have not brought that here today, codes of conduct and within those professional standards, but obviously, that can be provided. they would not be producing any professional standards related to assisted suicide or voluntary euthanasia. They Mr Downie: Yes, and, obviously, being a member of provide indemnity for nurses who are members, and most the Royal College does provide this specialist insurance nurses are members of the Royal College of Nursing or the indemnity. Would it be possible to obtain information of Royal College of Midwives, and they provide indemnity and what would not be covered? insurance. They would not provide indemnity insurance if something went wrong. Miss Critchlow: Yes.
The Chairman: Are there any other areas of nursing M r Downie: That would be helpful for the Committee. practice where that disinclination to provide indemnity occurs? Mrs Hannan: Isn’t there a problem here with...? Nurses are involved with patients dying, whether it is in a general Miss Critchlow: I do not know of any offhand. They hospital, in the community or in a hospice. It seems to be have not made any positional statements in relation to that the consent of the patient If the patient consents to die, that seems to be the problem. Would you not agree that you have The Chairman: But given your role and your experience, got a hospice, you have got the community or you have got a chances are, if it was occurring, you would have heard of general hospital where we all know that nurses are involved it? with patients dying, so is it just because the patient consents to it that is the problem? Miss Critchlow: Yes, and I think if you work outside your scope of practice, what is reasonable and practised Miss Critchlow: I am not sure what your question is, by a reasonable body of nurses and midwives, they will Mrs Hannan. generally not support you. If you work within a reasonable kind of practice you will be supported. This is the only thing Mrs Hannan: Well, we all know that nurses are involved that I know of that they have made a specific statement like with patients dying... that on. Miss Critchlow: But not assisting patients to die. M r Anderson: Can I just follow up on one area that you covered at the start? What is your relationship with the Mrs Hannan: Well, there is a line, isn’t there? nurses that work within the hospice? Miss Critchlow: A very fine line, yes. Miss Critchlow: As the Chief Nurse Adviser for the Isle of Man I work very closely with them in helping and Mrs Hannan: - whereby you are assisting someone supporting their professional development, along with the to die and relieving pain. So you are relieving pain, but senior nurses at the hospice. So it is really in an advisory in relieving pain the patient dies. What I am saying is that capacity. when we do that... I am a nurse and I have experience in this field. It seems to be the problem of the patient actually Mr Anderson: So they work to the NMAC consenting to it Would you not agree that, in a hospice - 1 guidelines? do not know what happens in a hospice, whether a patient consents to die, - but that is what happens? Miss Critchlow: They all work to the NMAC guidelines, yes. Miss Critchlow: Potentially, a patient who goes into a
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Miss B Critchlow Oral Evidence SELECT COMMITTEE, WEDNESDAY, 5th MAY 2004 5 KCE hospice probably realises that they are coming to the end themselves and the dying process, but the burden that of their life, and they are going there for palliative care, they are on others around them and the effect it is having in order to ease the dying process, but not necessarily to on others around them: ‘I’m a burden on the healthcare exaceibate death. system, I’m a burden on my family, I’m a burden on my I suppose, what happens in reality is analgesia or other friends.’ So, it is not often about themselves, and what they drugs are given, which, actually, may exacerbate the death, are actually experiencing, but what they do not want others although it is not the intention to actually cause death. to experience. The intention is to relieve symptoms and I think that is a difficult dilemma. It is a very difficult dilemma, but there is a Mr Anderson: Do you think as a result of that, then, difference between voluntary euthanasia and assisted suicide, if legislation was brought in, that those people would and actually relieving symptoms at the end of life. become more vulnerable, be a vulnerable group of people in themselves? Mrs Hannan: What do you understand by voluntary euthanasia? Miss Critchlow: I think there are risks to introducing this kind of legislation. There are risks of not introducing it Miss Critchlow: What I understand by voluntary There are risks that some patients will die in a symptomatic euthanasia is where, with the patient’s consent, the patient state where they are experiencing pain or suffering. That is is actually assisted to die by giving them a lethal substance never going to be alleviated for everybody. of some sort But there are also risks whereby, if you introduce such legislation, you introduce risks, whereby vulnerable people Mrs Hannan: Doe euthanasia not mean a 'nice death*, feel that they have an obligation to society or to their or whatever? family, or to whoever, to request either voluntary euthanasia or assisted suicide. You have risks whereby you start to Miss Critchlow: Well, the Greek term means good undermine the trust and the relationship between healthcare death, but it is hard to define euthanasia on its own, and that professionals and patients, because elderly people coming is why on many occasions we now put other terms with it into hospital might not fully understand the position, and not know their position in requesting voluntary euthanasia - either passive, active, voluntary, involuntary - because or assisted suicide and actually might become frightened of ‘euthanasia' itself really means ‘good death*; but it is the the healthcare system. word that we put on before it which is probably the descriptor I think that is a worry for some health professionals, in some ways. too, and that people may feel obliged to request voluntary euthanasia when it is not really what they want but what Mrs Hannan: It is a few years since I have practised they think others want. as a nurse, but do patients actually give consent now for strong analgesia? Mrs Hannan: Could I just ask: do you think there is enough protection for nurses and healthcare professionals? Miss Critchlow: It depends on whether they are able to, but most patients recognise that they are having analgesia to Miss Critchlow: We hope we work in a blame-free help their symptoms, yes. An informed consent - it might organisation, in healthcare, but one that is accountable, so not be written consent - is always given because you have to I think if people practise within their codes of conduct and have a patient’s consent, if they are able to give it, to put an practise within reasonable, standard guidelines, then I think injection in the arm or whatever. If the patient is not able to they are protected by their organisation. consent then you would hope that the doctor and the family One of the challenges that we have - and I think on act in the best interests and make the decisions about the the Isle of Man that challenge is even greater - is that we best way to care for that patient as they can. are a small community and to maintain the confidentiality of those who practise, who might practise assisted suicide Mr Anderson: I just wondered: had you any personal or euthanasia, might be more difficult in a community like experience of nursing dying patients, and would you like to this. Protecting the anonymity of the patient as well, might comment on how you found that situation for yourself? be more difficult in a community of this size, and I think those are things that we have also got to consider on the Miss Critchlow: I have never experienced where a lethal Isle of Man. substance is given to a patient with the intention of causing A healthcare professional is not as anonymous on the Isle their death, and I think most nurses will tell you they have of Man as they might be in a bigger society, and so I think never experienced that within the organisation, if there were legal guidelines in Most nurses will have experienced periods where a relation to assisted suicide and voluntary euthanasia, then the patient is, really, coming to the end of their life, and you individuals would be protected, but the difficulty is whether want to support the dying process, relieve symptoms and, they are protected on the whole from society. as 1 said eariier, there are times when we know that there is a risk that that will exacerbate the timing of death, but that Mrs Hannan: I am just thinking now, in the situation death is inevitable. there is now, is there enough protection for nurses? If a nurse It is distressing for all concerned and the nurse’s role, thought that a patient was being given too much analgesia, really, is to give the support to the patient and the family, what position could she play, at whatever level, in the actual and also in a multi-professional way to work as a member administration of that analgesia? of that team. I think the difficulty that some professionals have sometimes is that patients will often talk about not Miss Critchlow: In all fairness, I think it is obvious
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Miss B Critchlow 6 KCE SELECT COMMITTEE, WEDNESDAY, 5th MAY 2004 Oral Evidence
that the medical practitioner is the one who would at the question, I believe, was framed: ‘Do you support a patient’s present time prescribe analgesia, but nurses do question, right to die?’ Most nurses would say yes, but if you then ask they question all the time, and we are becoming a much more them: ‘Would you assist in that process?’ then their answers questioning, profession - there is no doubt about it - and might be quite different, and they were not asked, then, would being encouraged to question, and teams work as a multi- they assist in that process. professional team now, and a lot of the decision-making is So, 1 suppose it is a matter of what you feel in your heart made as a multi-professional team. can be quite different from what you practically would do It is not made by a physician alone, and some nurses as a nurse. It can be a different thing, really. would question - and I know that nurses do question at the present time - whether it is in relation to analgesia or Mr Rimington: Would you speculate that the fact that other forms of healthcare practice. At the end of the day, the 800-plus did not respond, would reflect a degree of the accountable officer, really, is the medical practitioner, indifference and probably an openness to consider how they the consultant or the GP or whoever, but nurses would might respond, if things did change? question, yes. Miss Critchlow: 1 think that that is something that would M r Rimington: Would you agree that, if legislation have to be considered and maybe a more informed, more was brought into the Isle of Man, the issue about lack directed study would have to be done of opinions. In relation of guidelines, or the UK guidelines not being able to to NMAC we just wanted to really make sure that we were accommodate the position in the Isle of Man, is a practical responding... if there were great views out there, if there was issue, and a serious practical issue, but should not, in itself, a certain opinion out there, that we were not missing it, and negate the process of legislation? it appears that we have not missed it at this time. A lot of people have said that they understand... It is a Miss Critchlow: I think the difficulty is that it would be very complex issue and people understand both sides of the a very practical issue that would have to be addressed, and I coin in this - they really do - but I think it is different when think it would be a difficult and complex issue to address. you are asked to practise it, and that is when nurses would At the moment nurses are regulated, obviously, by the really have to consider what they wanted to do. UK legislation, and that has then been translated into the NHS Bill here. That makes it very difficult and there would Mr Rimington: Yes, I think you would probably accept have to be considerable negotiation. The NMC is a very big that if legislation was brought in, it would be voluntary, in the standing body, there is no doubt about it, and it is a statutoiy sense that there would be no compulsion on any practitioner, body and to negotiate on behalf of 900 nurses with them either nurse or medical practitioner, to participate, if they felt would be quite a difficult task. they could not, from their conscience point of view. However, I can see that if we had legislation here, those processes would have to be gone through, if nurses were Miss Critchlow: That would be very important within willing to practise assisted suicide or voluntary euthanasia. the boundaries. That would have to be within the legislation, there is no doubt about that, and there may be some people M r Rimington: Could 1 go back to the fact of the very who would want to object, and there may be some people small response you had to your questions. Also, I do not know who would be willing to assist how you framed them or whether it was just a standard letter or a questionnaire. Would you agree with me: our evidence M r Rimington: If society itself, through lawmakers, is that the people who oppose the concept of medically has the opinion that medically-assisted suicide is a practice assisted suicide make their views known, and make their which they are prepared to condone under, hopefully, very views known quite strongly, whereas for those who support, tightly controlled circumstances, understanding that there the concept is probably not felt so deeply and do not tend to would be reluctance amongst professionals - as indeed make their views known. there is reluctance in the general public because there is Say the Isle of Man, and probably elsewhere, in broad divided opinion - would it not be reasonable for the nursing terms, had been imposed and, say, the majority are in a profession to accommodate that view about changing the simplistic way in favour, whereas when you come down to law? people who wish to give evidence, then the majority who give evidence are against. Would that... ? Miss Critchlow: We talk about the rights and the autonomy of the patient, and that is very important, but we Miss Critchlow; I can understand what you are saying, also have to consider the rights and the autonomy and the but the same could be said, the opposite view, that people well-being of the healthcare professionals that would be who are for assisted suicide and voluntary euthanasia also asked to practise this. That has also got to be an important make their views very well known. balance within the view. There will be practitioners who In relation to the way we framed the question, we asked would be willing to accommodate this legislation, l am sure, people for their views if they wanted to make a view, because but there would be others who would not be. we were presenting written evidence as a part of this process, and so, those who made their views known, either did that M r Rimington: But as a body of the individuals that are verbally or in writing. I think the same could be said for those in it, would it not be fair for the wider body to put in place who support voluntary euthanasia and assisted suicide. procedures to accommodate the fact that some are prepared One of the things that is quite clear - and I think when and some are not prepared? you talk to nurses - there has been some research in the UK, where it all depended on how the question was framed. The Miss Critchlow: I think at the moment the Royal
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Miss B Critchlow Oral Evidence SELECT COMMITTEE, WEDNESDAY, 5th MAY 2004 7KCE
Colleges, both within nursing and medicine, believe that Mrs Hannan: But the nurse and the doctor knows that those procedures are so difficult to cover every scenario to give more... that that is part of the reason why at the moment it is not something that they are willing to consider. The Royal Miss Critchlow: Yes, they know that there is a risk that College has quite clearly said it cannot see in the foreseeable it will exacerbate the timing of the death. future where it would change its position. The Nursing and Midwifery Council would have to reconsider if UK Mrs Hannan: Is there a time limit which is recommended legislation was brought in. I do not think there is any doubt for people who work in this particular area, in certain wards about that But the Royal College of Nursing has quite clearly and hospices and palliative care in the community? Or do said it cannot see in the foreseeable future where it would people work in it for years and years? Do you know? change its position. Miss Critchlow: Most people have got a lot of experience M r Rimington: Would you accept, as a general point, and they choose. In all professions, now, people choose to that law can never, satisfactorily, cover every scenario specialise in certain areas, and palliative care is a recognised in whatever area it is dealing with, and that it lays down speciality within medicine and nursing. general principles and guidelines, regulations, to try and There are some views: I can remember working, in cover as many scenarios or conditions that are relevant, but, England, in a palliative care unit, where that practice in essence, it is the spirit of the law, and the case law that recommended that people did not work there for more than derives from that over the years, through the interpretation three or four years, and that might be right that might be by the courts, which establishes how that law is actually wrong. But there is not a standard recommendation that managed in careful definition? ‘This is fairly trying work, so, therefore, you should only work in it for a few years and then have a try of something Miss Critchlow: I accept that principle, and I think, in else’. No, there are people who work in palliative care for practice, it is often very difficult to interpret In healthcare, all of their careers. the reason why many ethical dilemmas go into the court is Although it can be an extremely rewarding specialism, because they are so difficult for the professionals to deal it can also be a very distressing specialism, but I think that with, and, in some ways, it is a way of finding a solution by applies to any area of nursing or medicine, whether it is things going into the court But I am not convinced that the paediatrics, whether it is oncology, whether it is medicine, profession has found a way through some of those issues whether it is surgery. itself, yet Mr Downie: Could I just ask you a couple of questions Mr Rimington: No, I am sure they have not I think there then. If the law were to be changed in the Isle of Man, to are a lot of people who have not found their way through it make assisted dying available as an option, your evidence, as well. Thank you. to date, shows that there would be major problems with the Royal College in the UK, first and foremost M r Anderson: Maybe, if I could just ask about the The other thing we have not touched on, yet is that there relationship a patient has with his doctor and with nursing would need to be a conscience clause, as it were, because, staff: would you agree that that is built on trust, and do you obviously, there are people in the profession who would not think that if legislation was brought in that would affect that want to get involved in assisted dying. Could I have your relationship that is built on trust? views on that, and also, just to clarify that the legislation in the Isle of Man on the termination of pregnancy is different Miss Critchlow: That is one of the issues that nurses from the legislation in the UK, and there is an opt-out have raised, and I think the profession has raised, that it is clause here, in that piece of legislation, for medical staff very difficult to see a way of not undermining that trust and and doctors. relationship, and, especially, for those who have not yet really developed a trusting relationship with their doctor. To Mrs Hannan: It is in the UK, too. be able to develop one, takes time and I think there is a view that this may undermine that relationship, yes. Mr Downie: So, if you could just give me your views on that issue. Mrs Hannan: But there must be a relationship where the doctors and nurses cannot do anything more, and there Miss Critchlow: Effectively, you would be looking to is a time when doctors and nurses cannot do any more, but have - 1 do not know what you would term it - a clause for the patient, surely, is still trusting, and there is this cross conscientious objectors, maybe, or for those people who over, isn’t there, between relieving pain and actually giving really did not feel that they could assist because it was against someone enough analgesia for...? Where is the dilemma their norms and values, against their ethical and professional there for the nurse? principles. I think you would have to have such a clause. You have Miss Critchlow: I think there is a dilemma there that you to respect the diversity of the health workforce now. There have to consider that, as I said earlier, there is a difference are a number of different values, norms, beliefs, religions between actually having the intention of ending life, and working in the healthcare sector, both here and in the UK, supporting dying, and relieving the symptoms of dying. The and our practices have to reflect that, not only in relation to patient will have a trust that their doctor and nurses are doing issues around termination, but other issues we also have. everything to relieve their symptoms, but not necessarily We allow for people to object, for example, to with the intention of ending their life. administering emergency contraception, and other issues like
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Miss B Critchlow 8 KCE SELECT COMMITTEE, WEDNESDAY, 5th MAY 2004 Oral Evidence that It can be a challenging dilemma for some professionals, My personal view is that, like you, there would be because of their background and their beliefs, and there has very small numbers, so, therefore, there would be far more to be some flexibility within the system, to allow them to people who would be requiring palliative care than assisted object. euthanasia or voluntary suicide, but 1 think it is a point that has to be considered, if that is what the professionals feel Mr Downie: The other thing I wanted to ask you about, will happen. was that - obviously, you have been in nursing a number of years, you are at the very forefront of the profession, M r Rimington: It is, in the way that you expressed it you have got a really good idea as to what goes on within as an alternative to palliative care, whereas the evidence, the nursing services - would you say that there have been I believe, from where it has been legalised elsewhere in significant advances in the levels of palliative care over the different forms, is that it is part of that palliative care process last few years, and has this brought about a better opportunity that those few people that do go down that particular route are to provide relief for people who are suffering when they really only going down that route in the very last period of are dying? their life, where they have already been involved in palliative care for some considerable time, and there is quite a high Miss Critchlow: Yes. I have seen massive advances percentage that relates to the last week of their life or the last in palliative care over the years. More than 20 years ago, I month of their life. So, they are already receiving palliative worked in a hospice in England, and I can see great changes care; it is not there as an alternative. when I consider die practices within the hospital and hospice here on the Isle of Man now. There have been advances in Miss Critchlow: I think at the moment the definition of all supportive therapies really, not only in the medicines but palliative care does not include assisted suicide or voluntary also in alternative therapies that, really, were not considered, euthanasia. The clear definition of palliative care, which is maybe 15 or 20 years ago, to be of relevance to the patient, promoted by the World Health Organisation, states that it and so there have been massive advances. will not prolong life and it will not hasten death. The point One of the key things to people’s opposition to this is that, you make would, effectively, add a different dimension to if assisted suicide and voluntary euthanasia are introduced, palliative care because it would hasten death. then those advances may actually slow down, or people and the professions and research, et cetera, may not invest in M r Rimington: Yes, but what I am trying to say is it does . the same way that they have done, in trying to find ways of not... Many people involved in that - still small numbers, but relieving what can be distressing symptoms of dying. elsewhere - have been involved in that route, it is has been But I think it is also fair to say it is not always a distressing in the closing stages of their life, where they have already time for the patient themselves, but it always is a distressing obviously been involvéd in the system of palliative care to time for families. that point when they take on that different dimension. For them, thè majority of people that have availed themselves Mr Rimington: On that last point, if legislation was of that circumstance, it has not been as an alternative introduced here in the Isle of Man, how many people would necessarily; it is just an alternative in the end process. you, realistically, expect might wish to avail themselves of that legislation? Miss Critchlow: It is difficult because you cannot say when a patient is going to die. With experience, you. can Miss Critchlow: 1 have no idea. That is a difficult one, say, ‘Well, the death is probably fairly imminent,’ but you really, but 1 should imagine, in a population of 75,000, if cannot say that, * If we assist the suicide today the patient that is the case, there would be very few. was probably going to die tomorrow anyway’. So, it is very difficult to say when do you make that decision, or when Mr Rimington: Can I just lead on from there. In the does the patient make that decision because they think their statement you felt that if legislation was introduced, this death is imminent. would negate development of palliative care and, obviously, the argument has been put forward that this undermines M r Anderson: Could I just ask if you think depression hospice et cetera. Could I put the view to you that the numbers is more common in people who are ili, than people who who might be involved, i.e. of individuals who would wish are healthy, and, as a result of that, do you think that could to go down that route and met the criteria, which would be influence somebody’s decision-making process when they quite strict, to actually allow them to go down that route, are ill? would be very small, compared to the numbers of people who are actually passing away year on year, and would not by Miss Critchlow: Yes. Obviously, I have not done any means, undermine developments in palliative care and significant research, but I have seen patients enough to know hospice care, but could indeed be... There are arguments to that when they are ill, they feel different than when they are the contrary, that this is part of that process, but just a very well, and patients who are dying often feel a sense of doom fractional part and it just widens that area. and forlorn, and take time to reflect over things and they often exhibit symptoms of depression, yes, and that can influence Miss Critchlow: There is a view that having an alternative the decisions that they are making and the choices that they choice may not in any way influence the development of are making at that time. palliative care, but in an issue like this, which is complex, Also, they see their families who are exhibiting those and for every argument for there is an argument against, the same sorts of behaviour and to see your family unhappy or view that was expressed by some of the nurses was that it sad or anxious is probably difficult for anybody, really, and may undermine the development of palliative care. that can influence the way patients feel.
House of Keys Select Committee on Voluntary Euthanasia — Evidence of Miss B Critchlow Oral Evidence SELECT COMMITTEE, WEDNESDAY, 5th MAY 2004 9 KCE
As I said earlier, I think most professionals will tell you the healthcare-professional team so a doctor cannot make when you talk to a patient who is dying they usually talk those decisions with a patient on their own, and it is about about others and the effect it has on others, rather than the informed decision-making. effect it has on themselves. Mrs Hannan: Are they always abided by? M r Anderson: Would you agree that probably about the lowest point of depression for people is actually when they Miss Critchlow: They usually are abided by, if the are diagnosed in the first instance? reasons are the right ones, but a doctor may overturn those in the best interests of the patient It depends on why the Miss Critchlow: Yes, I think so and you go through patient has made those decisions. If the patient has no all those processes, don’t you? Those grieving processes illness whatsoever, and no reasons why they should not where it is disbelief, then anger and denial and then a sense be resuscitated and go on to live a normal life, then their of acceptance really and a sense of... Many patients actually decisions may not be as informed as they feel they are, and use the period during a terminal illness to plan, to think about a doctor will try to help a patient understand that things, to think about their life, to spend time with family. So for some patients that period of time is very important Mrs Hannan: No, but if a decision has been made with the patient and the doctor and the team and everything, is it M r Anderson: And going on, would you agree, then, usually abided by? that there is quite a fine line between depression and mental illness? Miss Critchlow: Yes.
Miss Critchlow. Well, clinical depression is a form of The Chairman: Could I ask you, you said, ‘the right mental illness. Feeling low and down, as everybody does reasons’: who determines what is right and wrong, in this at some point is not necessarily mental illness, but if you scenario you have just described? are clinically depressed it is a form of mental illness at that time. If you are not dying, it does not mean that you will go Miss Critchlow: That is the difficulty, isn’t it? Because on to have mental illness for the rest of your life, but it is a there are different ethics, different values. The patient’s form of mental illness. reasons might be good and proper for the patient, but they might not be good and proper in the views and values of Mrs Hannan: But, if the legislation was written to say others, and that is the real dilemma here. It is what is a ‘good that somebody had to be of sound mind, then, in that instance, death’, it is what is in people’s different views, and that is they would not conform to voluntary euthanasia, would they, the difficulty. and in some legislation, would you not agree that there should At the end of the day, within medical and nursing ethics, be what you might call a cooling-off period, whereby maybe your decisions have to be based on what is right and good for there was a month from making the decision to in actual fact the patient and that is where most ethical dilemmas come remaking a decision, and would that not help? about because what you believe as a healthcare professional is right and good, might not be the same as what a patient Miss Critchlow: I think there would have to be, really. believes is right and good. That is the other issue with advance directives and that is one of the big dilemmas, that when you make decisions The Chairman: So the potential inherent in what you about your life or your well-being, there is a timeframe in have just said is for some healthcare professional to impose which you may make those advanced decisions or advanced their values on a patient against their express, informed, directives, when you are in a certain state of mind in a certain persistent wishes? timeframe, and you think you know you have made the right decision. Other things can affect that decision further Miss Critchlow: There is always a potential for that, but down the line, and, at any point somebody should be able that is why no one individual makes those decisions, and it is to overturn those directives, if they are able to. made by a healthcare professional team. No one individual works alone now in healthcare. Mrs Hannan: What happens if somebody comes into hospital, and I do not know whether it happens or not, but The Chairman: Could you just go back to the issue the request is not to resuscitate? Is that always conformed about the proposal that trust is somehow built up between a to, if the patient says, ‘I don’t want to be resuscitated’? Is medical professional, a doctor and a patient by not accepting that...? their persistent and informed and considered opinion but by knowing better. Would that be a fair summary of what you Miss Critchlow: Advance directives are taken into are describing? consideration when caring for patients and also the patient's choices in relation to the care that they have. A patient can Miss Critchlow: No, what I am describing is that I think ask not to be resuscitated and those decisions are usually there has to be... Consent is not at one point; consent is talked through with the patient so that they fully appreciate... often a journey between the patient and either the medical They are talked through with their family and they are practitioner or the team, and so, if a doctor or a team made as an... The clear practice in relation to that is that persistently oppose the views of a patient or their family, they must be made in relation to... The ‘do not resuscitate’ then I think that would have to be challenged by the patient guidelines, basically, say they must be made with the patient and their family, and other team members could become with the patient’s closest relatives or carers and also with involved, other second opinions could be sought But really.
House of Keys Select Committee on Voluntary Euthanasia-Evidence of Miss B Critchlow 10KCE SELECT COMMITTEE, WEDNESDAY, 5th MAY 2004 Oral Evidence
if a doctor persistently negated the views of the patient, then a small percentage of people. there probably is not a trusting relationship that has been formed, anyway. The Chairman: And what would your understanding be of the number of residents on the Island who would want a The Chairman: So, the corollary of that is a trusting change in the law? relationship will be one where the doctor or the medical team respects and considers and, where possible, accedes to the Miss Critchlow: As it stands at the moment, from what I opinion of the patient where they are given in an informed, have seen it is quite... It is around about 2,0001 believe, but considered manner? I am not fully informed on that But that is whether they want a change in the law. Whether they actually want to request Miss Critchlow: You would hope so, yes, and act in the assisted suicide or voluntary euthanasia is a different thing, benefit of the patient but I am not fully informed on the actual numbers.
The Chairman: Could I just go back to the very small... The Chairman: Would I be fair in reflecting that back I think 95 per cent of your membership on the Island did not to you, that would be a very small minority of people on respond, either through, I think you described it as, apathy or the Isle of Man who actually have indicated in MORI polls a disinclination to believe that anything is going to change. in the media that they want a change in the law with proper What are you doing, currently, to obtain a more full view of regulatory guidelines? your membership about these issues? Miss Critchlow: In a population of 75,000 that is Miss Critchlow: 1 think at the moment it is not... Here probably relatively small, yes. on the Island, it is a key issue, at the moment and it is on the political agenda and it is on the public’s agenda. In general, The Chairman: You were not aware of the MORI poll it is not an issue, at the moment that is on the professional that said there were something like 70-plus per cent of the agenda within our college or within NMAC, but I think population asked wanted a change in the law? that is something that has to be considered. Their position has been made clear and NMAC have said... Our UK body Miss Critchlow: I am aware of that, but again, I am not has actually said, *71118 is not on our agenda at the present fully... I think I would have to consider how that view was time/ sought, and on the questions that were asked. 1 personally was not asked, as a resident M rs Hannan: There is a Committee of the House of Lords looking at this in the UK. The Chairman: No, and I think we need to be clear, most of your questions, unless you have indicated, you Miss Critchlow: Yes, at the moment and they have not have been answering in your official role rather than in a been asked for their opinion, as yet personal capacity -
M rs Hannan: They are taking evidence, I think, in Miss Critchlow: Yes, not in a personal capacity. July. There is another body looking at this in Guernsey, so it seems to be very much alive in lots of communities at the The Chairman: - unless you had said. moment Miss Critchlow: Yes. Miss Critchlow: I think what maybe needs to happen is that there is a more informed opinion of nurses and midwives The Chairman: Good. here on the Island and the medical body. We directly asked for opinions, and that is the position that was forthcoming. Mr Anderson: Could I just ask, if there was a change to legislation on the Isle of Man, do you think it would create a The Chairman: You are not saying that there is any problem, if our jurisdiction’s legislation was different from specific initiative that you will be doing to obtain a more all the other jurisdictions round about us, in attracting certain full representative view? medical and professional medical practitioners to the Island? Because if our legislation is different we would obviously Miss Critchlow: Not unless requested to do so. get a load of publicity.
The Chairman: Could I just ask you a couple of Miss Critchlow: I think so, yes. I am not convinced questions, if I may? In your view, do you think that there are it would attract, necessarily, any doctors and nurses who a number of patients who would actually require a change specifically had a view on this, and, therefore, wanted in the law to allow the issue -? to come to the Island, because the numbers would be so small. Miss Critchlow: Would require or would want? M r Anderson: But on the contrary, the other way The Chairman: Would want then, okay. round?
Miss Critchlow: Yes, I think there probably are a number Miss Critchlow: It may make people think twice about of patients who would, but I think, as we said earlier, on the actually coming to work here on the Island, if we had this Island, where, in the bigger scheme of things, it is probably legislation in place, but I think, unless, you ask them it would
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Miss B Critchlow Oral Evidence SELECT COMMITTEE, WEDNESDAY, 5th MAY 2004 11KCE be difficult for me to comment, to be honest with you, Mr about it and that practice would not be supported by their Anderson. I think it would be something that would have to college. be considered. If people were able to opt out, though, then that is a different matter, but it may give an indication of our The Chairman: Could I just pick up on that and ask, values to people, either rightly or wrongly. as an extension of that, presumably the RCN, BMA all the rest of the professional bodies, do they blacklist or have any Mr Anderson: When abortion for example was legalised kind of censure against people who have been in professional in the UK, a clause was introduced for doctors who would practice in Oregon or the Netherlands or Belgium? not wish to perform termination of pregnancy in any circumstances, and this was said to protect those doctors Miss Critchlow: They do not represent... They have with such views. What actually has happened is that doctors their own representation. with those sort of views find it very difficult to get jobs in gynaecology. Do you think a similar situation could arise The Chairman: No, but the people who have worked in doctors likely to invoke the conscience clause, and find there previously and they have engaged in these practices? that militates against them in obtaining positions in the jurisdiction that might permit voluntary euthanasia? Miss Critchlow: It is the practice: it is not that they would not let those people be members, it is that they would Miss Critchlow: I would hope the profession would not not support them in that practice, and, like I said, it may be let that happen. I would hope that organisations would not that that is one small part of their practice, but they would let that happen. This would be a very small number and so not support them in that practice. saying that you consciously object to assisting in suicide and voluntary euthanasia, really, should not influence whether The Chairman: So, would it be likely or not - do not you are able to practise here or how people would view you let me put words in your mouth - that the BMA or the as a practitioner here on the Island. Most of your work would RCN would want to blacklist the Isle of Man with a carpet be in relation to healthcare practice. This would be a small blacklist because a small part of some people have opted in part of it, I suppose, so you would still be able to perform to engage in the lawful process of voluntary euthanasia or 99 per cent of your job, you would hope. Slightly different assisted dying? in relation to gynaecology in the view this would be a very small part If you work in gynaecology you would have to Miss Critchlow: I do not think they would blacklist us. work with patients who were requesting termination. In this I just do not think they would support the practice. circumstance you may not have to work with patients who are requesting assist»! suicide or voluntary euthanasia, so The Chairman: The practice, at that point, yes. Could it is a difficult issue to judge really. I ask you about Oregon and the Netherlands and Belgium? Do you have any misgivings about the medical practice or M r Downie: I have a couple of questions for you. Given the qualifications or the ethical integrity of the practitioners that the staffing position in die hospital, both with doctors in those jurisdictions who engage in these practices? and nurses, I would guess, as a fair number, there would be people there from about 20 to 25 different nationalities - Miss Critchlow: No, there are two sides to this, and there are right and wrong within it They have made decisions Miss Critchlow: I suppose there are. within their legislation to practise assisted suicide, voluntary euthanasia and those are the decisions, and I respect those Mr Downie: - a huge amount of variance right across decisions of those countries. the spectrum, particularly the doctors. Would I be safe in saying, then, that if the Isle of Man was to go ahead and The Chairman: John? introduce its own type of legislation without the blessing of the BMA, the Royal College of Nursing or the Nursing Mrs Hannan: No questions. and Midwifery Council, we could find ourselves in major conflict? And could I have your views on whether, if we The Chairman: Thank you very much. Before you go, went down that route, there could be a likelihood of the Isle is there anything that we have not given you the chance that of Man’s position being blacked in some way by some of you wanted to share with us, or to conclude or to clarify some these organisations? of the points that we have touched on?
Miss Critchlow: I think there would be a conflict, there Miss Critchlow: No, I do not think so is no doubt about it, and there would be a conflict that would have to be overcome. There are no conflicts that cannot be The Chairman: Thank you very much for your time overcome in one way or another, but it would have to be Miss Critchlow. overcome and that would be quite a hard process, I have no doubt As I have already said, the Royal College of Nursing has quite clearly said it will not condone and will not support Dr Garland was called at 11.15 a.m. any members who practise assisted suicide and voluntary euthanasia. At the moment, I do not think their position will change, Procedural so that would put people in a difficult position here, as part of their membership of the Royal College, there is no doubt The Chairman: Dr Garland, I have just been asked by
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Miss B Critchlow Procedural 12KCE SELECT COMMITTEE, WEDNESDAY, 5th MAY 2004 Oral Evidence my colleagues for a two-minute comfort break, so perhaps a copy, maybe, if you could talk us through it and summarise we would all be grateful of that We will rejoin in just a few it as you go, and, maybe, if we hear that, and then come back moments. with questions, rather than interrupt you, if that is okay.
Dr Garland: I have a few copies of the statement I would Dr Garland: Thank you. Thank you very much. It is just like to make. I do not know whether it would be helpful to prefaced by the observation that: have those. Everybody may like to have a glance at them in the comfort break, if you are not otherwise engaged. ‘Throughout history, any idea worth its salt has been guaranteed to cause widespread offence. Everything from universal suffrage to organ transplants, from contraception to legalised divorce, was once considered an offence to public decency’.
The Committee adjourned at 11.10 am. Regarding the notion of ‘the good death’, we have and resumed at 11,15 a.m. standards that vary with the extent of secularisation and individualism within a particular culture. Palliative care and the movement to support voluntary euthanasia do have something in common. Both find support Procedural in individualistic societies that promote personal autonomy - that is, the right of individuals to make their own choices The Chairman: Thank you, everybody, for your about how they should live and die. The question of how to indulgence, and Dr Garland, thank you for attending. I think die well today is how to live sometimes for months, or even you were here, previously, when we did the introductions years, knowing that we are dying. This question is what both (Dr Garland: Yes.) to the Committee, and the personal the palliative care and the voluntary euthanasia movements introductions, so we will not go back over that are addressing. If I could, perhaps, remind you we are taking the recording for Hansard (Dr Garland: Sure.) so if we are The view that patients should be able to choose the manner and timing of their death is gaining support. In a mumbling or stuttering, please let us know, and if you could speak clearly, that would be much appreciated. British Medical Journal poll, 692 respondents voted on the three most important characteristics of a good death. Lay Dr Garland: Right people selected freedom from unpleasant symptoms, choice over timing of death, with the possibility of bringing death forward, and choice over the place of death. Healthcare professionals differed, they picked freedom from unpleasant symptoms; agreeing about number one, , but with number EVIDENCE OF DR J GARLAND two, they put freedom from heroic medical interventions; and third, choice over place of death. Timing, I think, only The Chairman: You were kind enough, just now, to give came fifth on their list us a statement that you want to give to the Committee. Do Some patients may never accept their end calmly and may you propose reading to this, or is this background information for us? not wish to be pain free, if its cost is to have consciousness and control diminished. The concept of a patient not wishing Dr Garland: Well, I would be really guided by you. If to be pain free and peaceful is so far removed from healthcare you feel it would be helpful to read to this, and you might professionals* notion of good, that they may discount the wish to raise questions, as I go through this, I would hope patient as non-rational. To pressure patients to have what that some of these issues could be dealt with this moming professionals would call a good death is paternalistic. here, because they do have a bearing on some of the things The interests of professionals and patients may not that have already been discussed. always coincide. The good death is one that is considered , So, I am really in your hands. It is not a lengthy statement appropriate by the patient and accordingly requested by and, obviously, I would leave out all the references and just them. Patients could well argue that the duty of healthcare the text itself. What does the Committee suggest? is to ensure that their good death is provided, rather than one determined by others. Mr Rimington: I would suggest that obviously, you The significance of a request for assisted dying: in Oregon would be able to give a copy of this to Hansard> so that psychologists can be involved in screening patients asking they can - for assisted dying. Ninety-seven per cent of psychologists confirm that tiiey would not view such a request as prima Dr Garland: Certainly. facie evidence of a mental disorder. Research shows that depression is not a primary motivating factor in requests for M r Rimington: - put it in the record, if that is the assistance to die. This has been demonstrated in a number of considered view, then it might be right then, obviously, to studies. Indeed, from a psychological perspective depressed have it recorded. patients would have difficulty in marshalling the energy and determination needed to persevere through the requirements Dr Garland: Yes. of the law in Oregon. Research in Oregon shows that the reasons people ask The Chairman: So you are happy with that Dr Garland. for and receive assisted suicide are many. Most often they We will take this document to be reflected in Hansard, and involve issues of autonomy and dignity. Physical symptoms for the sake of other people who are here, and have not seen such as pain and fatigue tend not to be the reasons people
Procedural House of Keys Select Committee on Voluntary Euthanasia - Evidence of Dr J Garland Oral Evidence SELECT COMMITTEE, WEDNESDAY, 5th MAY 2004 13 KCE cite in making a request, although anticipation of worsening Oregon, accounting for six to nine of 10,000 deaths per year. symptoms may influence a request. Hospice nurses and Physicians grant about one in six requests for a prescription social workers note that a patient's desire to control the for a lethal medication and one in 10 requests actually results circumstances of death is primary among 21 reasons for in suicide. Regarding evaluation of requests for dying, many requesting a lethal prescription. Readiness for death is symptoms given as diagnostic of depression are also common ranked second and wishing to die at home ‘not hooked up in severe physical or terminal illness. Requests for assisted to machines in an institution* is third. suicide are not necessarily driven by depression. Palliative care in Oregon is of a very high standard. In Many important questions about how these assessments Oregon; in 2003, 93 per cent of patients who died from should be conducted remain unanswered. It is an important physician-assisted suicide were in hospice care, or ’comfort task and it is usually done in far from ideal conditions. The care’, as it is known in Oregon. Everything is done to ensure legal standards in Oregon are that a patient must be able that the patient does not need to choose physician-assisted to express a stable choice; they must understand the risks, suicide. For example, it is important to point out that benefits and alternatives of the decision, they must prove physicians initially respond to requests for assisted dying able to appreciate the information by applying it to himself with palliative interventions rather than lethal prescriptions. or herself and they must be logical in offering rational and Patients who received physician-assisted suicide stayed in understandable reasons for the requests. hospice care on average for 49 days, whereas other terminally Regarding the views of patients and family carers, there ill patients who did not choose this option spent on average is relatively little research into the experience of patients 19 days in such care. requesting assisted dying. Healthcare providers do need to Who seeks assisted dying? In Oregon, such people tend respect the views of dying patients and not only regarding to have above average financial resources and a college cultural and religious attitudes, but also secularism. education. The most active in .a pursuit of assisted dying Oregon patients and carers report that they value tend to be focused, determined, strong-willed and stubborn clinicians who show openness to discussions about assisted individuals who are single-minded and uncompromising dying, expertise in dealing with the dying process and ability in their approach. They particularly value remaining in to maintain a therapeutic relationship even when there is control and avoiding dependence on others, they see little disagreement They are aware that in a medical culture, value or meaning in proceeding through a drawn-out dying that views death as failure, physicians can be unprepared process, and are extremely sensitive to physicians who to discuss topics such as dying and suffering. These can appear to discount them by mistakenly labelling them as constitute an unacknowledged ‘elephant in the room’, with ‘depressed’. a patient and clinician colluding to avoid difficult topics. Some are described by physicians as loners by choice, Overall, families of hospice patients who did receive whose views do not mesh with the philosophy of hospice prescriptions for lethal medication were more accepting care. They appear more willing to consider palliative or of and prepared for the patient’s death, although they were hospice care, if assured that assisted suicide remains an somewhat more likely to report distress than were the option in case of need. Twenty per cent of all persons who families of other hospice patients. Among other topics, die by assisted suicide in Oregon are offered hospice care, but patients had spoken of not wishing to burden their families, initially refuse it. Patients actively seeking physician-assisted although in general the families concerned were better able suicide and they tend to prefer the term ‘hastened death’ tend to deal with care-giving and more positive about it than the to deliberate about their decision and communicate their others’families. intent to family members. The Dutch studies of family and friends of patients Deaths tend to be carefully planned in a context of social receiving voluntary euthanasia showed them to be less support and the patients, as I have already mentioned, are of religious and with a higher level of education than the family above average socio-economic status and are not motivated and friends of controls. They coped better, had fewer major by poor social support or financial concerns. While palliative grief symptoms and post-traumatic reactions. interventions lead some patients to change their minds, others Regarding the views of professionals, professional experience more care as fuelling their fears of a spiral of associations traditionally have been firmly against legalisation increased dependence on others. of assisted dying, but as with the European Association If they are to encourage more patients to change their for Palliative Care, it appears that the stance is modified minds about assisted dying, palliative care practitioners somewhat over recent years and, in 2003, they showed some need to develop ways of responding to existential concerns, more interest in, at least better debate and discussion on this fear of dependence and lack of control. In the Netherlands, topic. A UK survey of2,709 nurses, reported in 2003, showed the number of serious and persistent requests for assisted, two thirds believe voluntary euthanasia should be legalised, dying stabilised after 1995, and is estimated at approximately 31 per cent think that nurses should be able to have a role in 5,000 a year. patients’assisted dying. Of 397 nurses and social workers in The relative importance of pain as a major factor in Oregon hospice programmes, only one reported they would requests has decreased significantly, and this has been have actively opposed a patient’s choice of assisted suicide paralleled by a proportionate increase in concern over severe in most or all cases. limitations imposed by deteriorating health. Fears that the Even though not all of them support the Death with lives of increasing numbers of patients would end through Dignity Act, they are all willing to care for patients who medical intervention, without their consent and before all make this choice. The US surveys show that between 31 per palliative options were exhausted, have proved unjustified. cent and 60 per cent of primary care physicians, depending ‘How frequent is assisted dying?’ In Oregon, only 1 on the survey, believe that physician-assisted suicide per cent of those who die each year explicitly request for may be ethically permissible for terminally-ill competent assisted suicide. Assisted suicide occurs only rarely in patients. Of 318 Oregon psychiatrists, 18 per cent saw
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Dr J Garland 14KCE SELECT COMMITTEE, WEDNESDAY, 5th MAY 2004 Oral Evidence physician-assisted suicide as never acceptable, 13 per cent Ganzinl & Dobscha, 2003). Indeed, from a psychological perspective, not acceptable for them personally and the remaining 69 per depressed patients would have difficulty In marshalling the energy and determination needed to persevere through the requirements of the cent considered that it was morally acceptable under certain law, circumstances. Research in Oregon shows that the reasons people ask for and receive assisted suicide are many. Most often they Involve Issues of autonomy Finally, perhaps, it might be worth mentioning that many and dignity. In the recent Sixth Oregon Health Services Report (2004), Oregon physicians report that since the passage of the Death it is made dear that physical symptoms such as pain and fatigue tend with Dignity Act, they have made efforts to improve their not to be the reasons people dte in making a request, although anticipation of worsening physical symptoms may Influence a request ability to care forterminally-ill patients. They arc more likely Other research has found this to be the case, as well. For example, to refer these patients to hospice and believe that hospice is Jackson (2003) has reported on findings by Ganzlni et al (2002) that more accessible since the Act came into force. hospice nurses and social workers note that a patient's desire to control the circumstances of death Is primary among 21 reasons for requesting a lethal prescription. Readiness for death is ranked second, The Chairman: Thank you very much, Dr Garland. I am and wishing to die at home 'not hooked up to machines in an conscious that is a highlight of the report, and the full report institution', third. Palliative care in Oregon Is of a very high standard. The Sixth Oregon with the references and the bibliography will be available in report finds that in Oregon In 2003, 93% of patients who died from Hansard, sir. Thank you for that PAS (physician-assisted suicide) were in hospice care (or comfort care as It Is known in Oregon). The remaining 7% had refused this care or had left In addition, everything is done to ensure that the patient Dr Garland: Thank you. does not need to choose PAS. For example, it is important to point out that physicians initially respond to requests for assisted dying with palliative Interventions rather than lethal prescriptions (Fenn & The following is the fiiU report submitted by Dr Garland: Ganzinl). This is exemplified by the feet that patients who received PAS stayed in hospice care an average for 49 days, whereas other terminally III May 5 2004 oatlents who did not choose this option soent on averaae 19 davs In Evidence to Select Committee of the House of Keys such care (as reported by Ann Jackson, Head of the Oregon Hospice on Voluntary Euthanasia Association).
Jeff Garland Who seeks assisted dying? In Oregon such Individuals are more likely other Oregonians to have 'Throughout history, any Idea worth its salt has been guaranteed to adequate financial resources and a college education. The people who cause widespread offence. Everything from universal suffrage to organ actively pursue assisted suldde are focused, determined, strong-willed transplants, from contraception to legalised divorce, was once and stubborn individuals who are slngie*mlrtded and uncompromising considered ah offence to pubttc decency* (Furedl, 2004). in their approach to obtaining a lethal prescription. They particularly value remaining in control and avoiding dependence on others, see 'The good death' little value or meaning In proceeding through a drawn-out dying process, and are extremely sensitive to physicians who appear to Cultural norms about'the good death' depend on the extent of discount them by mistakenly labelling them as 'depressed' {Ganzinl & secularisation and of Individualism within a particular culture. Although Dobscha). palliative care often distances itself from organisations supporting Some are described by physicians as loners by choice, whose views do voluntary euthanasia the two do have one thing In common. Both And not mesh with the philosophy of hospice care. They appear more support In Individualistic societies that promote personal autonomy - willing to consider palliative or hospice care If assured that assisted the right of Individuals to make their own choices about how they suldde remains an option in case of need (Ganzlnl et at, 2003). should live and die. Twenty percent of all persons who die by assisted suicide in Oregon The question of how to die well today Is how to live for months, or are offered hospice care but refuse it (Ganzlnl et al, 2002). even years, knowing that we are dying. This question is what both the Patients actively seeking physician-assisted suicide (they tend to palliative care and the voluntary euthanasia movements are prefer the term ’hastened death1) tend to deliberate about their addressing (Walter, 2003). decision artd openly communicate their Intent to family members. The view that patients should be able to choose the manner and timing Upon family requests, some are prepared to modify or delay their of their death Is gaining support within an Increasingly secular society plans even when doing so prolongs suffering. Deaths tend to be with an Individualistic and utilitarian ethos (Mak et al, 2003). carefully planned In a context of social support (Bharucha et al, 2003). In a British Medical Journal poll 692 respondents voted oh the three They are of above average socio-economic status, and are not most Important characteristics of a good death, lay people (171) motivated by poor social support or financial concerns. Ready to die, selected freedom from unpleasant symptoms, choice over timing of they assess their quality of life as poor. death (with possibility of bringing death forward), and choice over While palliative Interventions lead some patients to change their minds, others experience more care as fuelling their fears of a spiral of place of death. Healthcare professionals (521) picked: freedom from Increasing dependence on others. If they are to encourage more unpleasant symptoms; freedom from heroic medical interventions; and patients to change their minds about assisted dying, palliative care choice over place of death (Clark, 2003). practitioners need to develop ways of responding to existential Some patients may never accept their end calmly, and may not wish concerns, fear of dependence and lade of control (Ganzinl, 2003). to be pain free If Its cost Is to have consciousness and control In the Netherlands the number of serious and persistent requests diminished. The concept of a patient not wishing to be pain free and stabilised after 1995 and Is estimated at approximately 5,000 a year. peaceful is so far removed from the health care professionals' usual The relative importance of pain as a major factor In requests has notion of good that they may discount the patient as non-rational. decreased significantly, and this has been paralleled by a proportionate To pressure patients to have what professionals would call a good increase In concern over severe limitations Imposed by deteriorating death Is Inherently medically paternalistic. The interests of health. Fears that the lives of Increasing numbers of patients would professionals and patients may not always coincide. A good death is end through medical intervention, without their consent and before alt one that is considered appropriate by the patient and accordingly palliative options were exhausted, have proved unjustified (Marquet et requested by them. Padents could well argue that the duty of health al, 2003). care Is to ensure resources and skills are available for their good death rather than one determined by circumstances beyond their control Mow frequent Is assisted dying? (Jones & Willis, 2003). In Oregon, only 1% of those who die each year explicitly request for Significance of a request for assisted dying assisted suicide (Ganzinl & Dobscha). Assisted suldde occurs only rarely in Oregon, accounting for 6 to 9 of In Oregon psychologists can be Involved In screening patients asking 10,000 deaths per year (Ganzinl et al, 2002). for assisted dying. Ninety-seven percent of psychologists (Fenn & Physicians grant about 1 in 6 requests for a prescription for a lethal Ganzinl, 1999) confirm that they would not view such a request as medication, and 1 in 10 requests actually results in suicide. Continuing prlm a fa d e evidence of a mental disorder. palliative Interventions lead some patients to change their minds Research, in which Linda Ganzinl has been a leading figure, shows (Ganzinl et al, 2000). depression is not a primary motivating factor in requests for assistance to die. This has been demonstrated In studies of doctors, hospice Evaluation of reauests for assisted dvina nurses, and padents and families (Ganzinl et al, 2001 and 2002, Many symptoms given as diagnostic of depression are common In
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Dr J Garland Oral Evidence SELECT COMMITTEE, WEDNESDAY, 5th MAY 2004 15 KCE severe physical or terminal Illness. Requests for assisted suldde are Clark, J. (2003) Freedom from unpleasant symptoms is essential Tor a not necessarily driven by depression (Ganzinl & Dobscha). good death. British Medical Journal, 7408, 26 July, 180- Many important questions about how these should be conducted remain unanswered. An important task has to be done In far from ideal Fern, D.S. 8» Ganzlnl, L (1999) Attitudes of Oregon Psychologists conditions (Fenn & Ganzlnl, 1999). Toward Physldan-Assisted Suldde and the Oregon Death With Dignity Four legal standards are to be met. A patient must be able to express Act Professional Psychology: Research and Practice, 30, 3, 235- a. stable choice; understand the risks, benefits, and alternatives of the dedsJon; prove able appredate the Information by applying ft to Furedl, F. (2004J Therapy Culture. Cultivating vulnerability in an himself or herself; and be logical In offering rational and uncertain age. London:Routledge. understandable reasons for the requests (Ganzlni & Dobscha). Ganzinl, L. (2003) From the USA; understanding requests for Views of patients and family carers physWan-asslsted death. Palliative Medicine, 17,113-
There Is relatively little research Into the experience of patients Ganzinl, L & Dobscha. S.K. (2003) If It Isn't Depression „ Journal o f requesting assisted dying (Mak et al) Palliative Medicine, 6, 6, 927- Healthcare providers need to respect the views of dying patients, not only regarding cultural and religious attitudes, but also respecting Ganzlnl, L e t al (1996) Attitudes of Oregon Psychiatrists Toward secularism (Neuberger, 2003). Physician-Assisted Suicide. American Journal o f Psychiatry, 153,1469- Oregon patients and carers value dlnldans who show openness to discussions about assisted dying, expertise In dealing with the dying GanzJnl, L e t al (2000) Physldans' Experiences with the Oregon Death process, and ability to maintain a therapeutic relationship even when • with Dignity Act The New England Journal o f Medicine, 342, 557- there is disagreement. They are aware that In a medical culture that views death as a failure, physidans can be unprepared to discuss Garcdnl, L. e t al (2001) Oregon Physicians' Attitudes About and topics such as dying and suffering. These can constitute an Experiences with End-of-Ufe Care Since Passage of the Oregon Death unacknowledged 'elephant In the room', with patient and dlnidan colluding to avoid difficult topics (Back et al, 2002). With Dignity Act Journal o f the American Medical Association, 285,18, Overall, ramines or nospice paoents wno receivea prescriptions for 2363- lethal medications were more accepting of and prepared for the patient's death, although they were somewhat more likely to report Ganzlni, L et al (2002) Experiences of Oregon nurses and sodal distress than were the families of other hospice patients. workers with hospice patients who requested assistance with suldde. Among other topics, patients had spoken of not wishing to burden The New England Journal o f Medicine, 347, 8, 582- their families, although In general the families concerned were better able to deal with care-giving and more positive about It than the Ganzlnl, L. et al (2003) Oregon Physicians' Perceptions of Patients Who others' families (Ganzlnl et ai, 2002). Request Assisted Suldde and Their Families. Journal o f Palliative Netherlands hospital-based study of family and friends of 78 patients Medicine, 6, 3, 381- receiving voluntary euthanasia showed them to be less religious and with higher level of education than family and friends of 1S6 controls. Jackson, A. (2003) Oregon's Death With Dignity Act A Hospice They coped better, had fewer major grief symptoms and post- Perspective After Five Years. traumatic reactions. Many attributed this to consultation over the patient's choice as having given them a chance to say goodbye more Jones, J. & Willis, D. (2003) What Is a good death? British Medical openly than they might have done otherwise (Swarte et al, 2003). Journal 7408, 224-
Views of professionals Mak, Y.Y.W. et al (2003) Patients' voices are needed in debates on euthanasia. British Medical Journal 74.08, 213- Professional associations traditionally have been firmly against legalisation of assisted dying, as was the case In the 1994 condusions Marquet, R.L. et al (2003) Twenty-five years of requests for of the Ethics Committee of EPAC (European Assodatlon for Palliative euthanasia and physidan assisted suidde In Dutch general practice: Care). In 2003 an updated version takes a modified stance, calling for trend analysis. British Medical Journal 7408, 201- better communication, respect for diversity of opinion, and greater understanding of the many complex reasons patients have for Mltchell, K. 8i Owens, R.G. (2003) National survey of medical dedslons requesting assisted dying (Ganzinl, 2003). at end of life made by New Zealand general practitioners. British in New Zealand, doctors who acknowledged having assisted dying in Medical Journal 7408,202- some cases Identified as being significantly older and less religious than their colleagues denying this (Mitchell & Owens, 2003). Neuberger, J. (2003) A healthy view of dying. British Medical Journal A UK survey of 2,709 nurses showed two-thirds believe voluntary 7408, 207- euthanasia should be legalised, and 31% think that nurses should be able to have a role In patients' assisted dying (Nursing Times, 2003). Nursing Times (2003) Dying Wishes. November 25, 99, 47, 20- Of 397 nurses and sodal workers in Oregon hospice programmes, only one reported they would have actively opposed a patient's choice of Oregon Department of Human Services (2004) Sixth Annual Report on assisted suldde In most or all cases. Even though not all of them, Oregon's Death with Dignity Act. Office of Disease Prevention and support the Death with Dignity Act, they are ail willing to care for Epidemiology. patients who make this choice (Ganzlni et al, 2002). http://www.dhs.state.or.u5/publlchealth/chs/pas/03pasrptpdf US surveys show that 31%-60% of primary care physldans believe physidan-assisted suldde may be ethkally permissible for a terminally Swarte, N.B. et al (2003) Effects of euthanasia on the bereaved family ill competent patient. Of 318 Oregon psychiatrists 18% see PAS as and friends: a cross-sectional study. British Medical Journal 7408,189- never acceptable and 13% as not acceptable to them personally but consider the decision should be up to the individual patient. The Walter, T. (2003) Historical and cultural variants on the good death. remaining 69% consider PAS morally acceptable under some British Medical Journal 7408, 218- drcumstances, such as those that might be faced by some terminally III patients (Ganzlnl et al, 1996). uregon psycnoiogists snow nign aegree or support ror assisted suidoe, but also a minority highly opposed. Elghty-two percent (n-345) would The Chairman: Could I ask you, Dr Garland, if you under some drcumstances consider obtaining a physldan's assistance have any direct experience of working in Oregon or the to end their own lives (Fenn & Ganzlnl). Netherlands or Belgium or any other jurisdiction that has Many Oregon physldans report that since the passage of the Death with Dignity Act they have made efforts to Improve their ability to care these systems? for terminally 111 patients. They are more likely to refer these patients to hospice, and believe that hospice Is more accessible since the Act came Into force (Ganzlnl et al, 2001). Dr Garland: No, only the UK. Just briefly, about my background, because I launched REFERENCES into my statement, perhaps, rather early: I have been a clinical Back, A.L et al (2002) din I dan-Patient Interactions About Requests psychologist since 1965. Most of my experience has been for Physldan-Assisted Suldde. A Patient and Family View. Archive o f in the UK. I am currently in practice in a part-time way in Internai Medicine, 162, June 10, 1257* the Isle of Man. Bharucha, AJ. et al (2003) The Pursuit of Physldan-Assisted Suicide: Here, I do a variety of things, including providing some Role of Psychiatric Factors. Journal of Palliative Medicine, 6, 6, 873- staff support to the hospice. So, I have seen something of
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Dr J Garland 16KCE SELECT COMMITTEE, WEDNESDAY, 5th MAY 2004 Oral Evidence the working of the hospice from the inside« but I have never considering? worked in any of these other settings, and I am relying on the professional literature which colleagues who have worked Mr Downie: Yes, I have one that I would like you to in these settings have made me familiar with. answer if you could come in here. If you look at the profile of the countries which have allowed legislation to be introduced M r Anderson: I am just building on Dr Garland’s first for euthanasia - Switzerland, Belgium, Oregon, USA - I comment there. What is your personal experience, then, of wonder how much pressure is on people who cannot afford rendering psychological support to the dying? extended health care. Their savings are coming to an end. Perhaps they do not have a medi-plan in place and, if it is a Dr Garland: Quite extensive, because much of my single person who, perhaps, does not have any dependants, practice was with older people. I worked in various it may be an easy option to go down the route of assisted departments of psycho-geriatrics and geriatric medicine for dying? many years and a significant proportion of the patients I saw were approaching death and, in some cases, in terminal care. Dr Garland: This was a fear in Oregon, but the research I also rendered some assistance and advice in hospices in which I have just summarised, very hastily, suggests that Oxford on a day-to-day. basis. So I have had fairly extensive the people who ask for assisted dying do not match that experience of working with people in terminal situations. kind of profile. They have better resources, better family links. It was a fear and research which was directed to try Mr Anderson: So would it be fair to say that you have to explore this fear seems to indicate, at least in Oregon, worked then with people who are vulnerable to pressure that is not the case. really? So the poor, the unresourced, the lonely are not pressured disproportionately to asking for assisted dying. I am afraid Dr Garland: We are all vulnerable to pressure, yes, I do not know what research has been done on that specific and I certainly say that I have worked with people who are issue in the other countries you mentioned. There may well vulnerable to pressure. be research.
M r Anderson: In what ways, then, might someone who M r Downie: I am not suggesting that they would be is weak and tired from terminal illness be vulnerable to pressured, but what I am suggesting is: in this country, in pressure to request to be killed? the UK and the Isle of Man, in particular, we do have a robust health service. (Dr Garland: Yes.) We do have an Dr Garland: It is difficult to make generalisations. I excellent system, throughout the UK, and in the Isle of Man, have never experienced or witnessed anything that could of hospice, (Dr Garland: Yes.) in which all of the financial be construed as pressure coming from either myself, my needs and the palliative needs of the patient are taken into colleagues or any family members. One of the extensive consideration, really at no cost areas of my practice was in working closely with family Now, we saw a recent situation in Switzerland where a members of people in terminal care situations, and we person from the UK went off with their wife, they decided had family conferences, we saw people as individuals and that they had had enough and there was a significant cost nobody ever, to my knowledge or my witness, suggested or involved in that (Dr Garland: Yes.) That is why I asked exerted any hint of pressure. What they did behind closed you the question, to see if there was undue pressure from doors, obviously, I can only speculate, but I have never people in these other locations, where there were no Health witnessed this. Services, to say, ‘Well, if my end is coming, why should I What I have been aware of is that talking about being a be forking out money for health services and palliative care burden to others sometimes reflects reality, in the sense that a when I can just take the easy option?’ great deal of care is given to such patients, and also that it is a way of opening up a conversation about their own feelings. Dr Garland: I do appreciate what you are saying, and It is a socially acceptable and rather British way of saying, I appreciate your concern. I have got no reason to suppose ‘I am terribly worried about what other people are going that is the case, but, in certain cases, it might be. I cannot through and then, with persuasion, they can be encouraged exclude it to begin to talk about their own concerns. Many patients do not begin by talking about their own Mr Anderson: Just following on, then. How do you think concerns, because they feel it would be selfish, inappropriate that patients who are dying feel about the relatives that are and unpleasant to do so. So, they advance concerns about grieving at the bedside? others ’ burden, as a way of sometimes getting round the fact that they too have got concerns, major concerns, and this is Dr Garland: There has been, in my experience, a perhaps one of the most important factors why people often huge spectrum of feelings and reactions expressed in my raise this issue of burden. presence by such patients. Some, for example, want to cut themselves off and detach themselves from the situation, Mr Anderson: Can you describe, then, any other sort and so try to engage as little as possible with what is going of emotional pressures that, real or imagined, might put on around them. Others are able, with a great deal of effort, pressure on those people? Do you think you have covered to maintain social contact and emotional contact with their it by what you have said? family members. Family members very often try to suppress the grief, Dr Garland: Let me just try to reflect. Can you give out of consideration for their relative and tend to grieve in me any suggestions as to the kind of pressures you are private, and bottle things up. People often collude with each
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Dr J Garland Ordl Evidence SELECT COMMITTEE, WEDNESDAY, 5th MAY 2004 17KCE other, the patient pretends that he or she is less ill than they somebody who chose assisted dying, that their relatives actually are and there are glimmerings of hope, the family subsequently might reflect on this choice, feel that this choice trying to explain to the patient that there is always hope and reflected on them and take it very much amiss, but I have each side may well know that this is not the case, but there is also worked with patients’ families subsequent to the death of a good deal of acting pretence going on, as well as genuine the patient and found such families extremely bitter and sad feelings. There is a tremendous mix of feelings going on. because the opportunity of assisted dying was not available to the relative, and the relative suffered a great deal in the Mr Anderson: So, do you agree that in some way the process, and they did too, and they make statements to me patient might take a decision based on the feelings that he like, ‘You wouldn’t treat a dog the way so and so has been has or she has for the relatives? treated.’ So, again, it goes the other way, too.
Dr Garland: For the relatives? Mr Anderson: If the legislation was then brought forward, what message do you think this would give to Mr Anderson: Because of the state of the relatives, do severely disabled, the sick and the elderly who know that you think that they would take that action to alleviate the they are burdens to others? distress that they see their relatives going through? Dr Garland: 1 think it would give a number of messages, Dr Garland: That is conceivable. Most of the decision and different messages will be heard by different recipients. making processes that go on, for example, in Oregon, are I have spoken to some disabled, sick and ageing patients in done in a family context with very considerable discussion and around this town, and a good number of them have told and support from professionals. People’s motivation for me that they wished the law could be changed because they taking decisions is gone into in an exhaustive way over a would like to have this option in front of them. period of as much as time will allow - sometimes for several Some of these people suffer from progressive wasting weeks or longer. So, there is awareness that people have illnesses, and dread the thought of becoming profoundly many reasons for making decisions and as far as is possible, incapacitated. They are already severely incapacitated, and I understand from what I have read, every effort is made to they tell me that, ‘If only this choice was available, I would encourage people to explore the full range of reasons for feel easier in my mind - an option I don’t expect ever to having come to a decision. take and I might well never take it, but I would like this choice.’ Mr Anderson: Have you ever known somebody who So I think the message - one message - that would is apparently fully, mentally competent, and who has ever come from this would be that, at last, the authorities, the wished to take that action, then later has changed their all-powerful ‘they’, are prepared to consider that this choice mind? might need to be offered to a few people who desperately, need it. Dr Garland: Yes, I have, and I have also known people And regarding the likelihood of such choice being initially say that they have no possible thought or wish for offered, as you have heard from the Oregon figures and having an assisted death, and changing their mind in the other have probably worked out for yourself, if the same pattern direction. It is very common, in my experience, for people to as Oregon occurred here, it would be less than one person change their minds in this very difficult period. So, change a year who would actually make this choice and have this can happen both ways. choice granted It is a very small number. I agree that other people would listen to this, and would Mr Anderson: Do you see any danger in doctors, carers say, ‘Oh dear, another nail in the coffin of respect for human or relatives trying to manipulate patients into requesting such life,’ but I think the message really depends on the hearer, so action, for their own motives? I think that there would be different messages coming from this - some would be messages of hope, others would be a Dr Garland: I think there is danger in almost everything message of something less than hope. we do, depending on how you look at that term ‘action’. You are asking me for a matter of opinion, and from what I have Mr Anderson: Are you aware that disabled organisations seen of my medical and nursing colleagues, I think that the are opposing voluntary euthanasia? danger is extremely slight. I have confidence in them that they would not stoop to this action, but I can only speak for Dr Garland: I am aware that some of them are. the people I know and have known. We have heard from the nurses’ representative, nurses organisations oppose. The medical organisations oppose. Mr Anderson: Can I just follow on, then. From your A lot of organisations oppose. They need to oppose for a professional stance what possible negative impact might whole variety of organisational reasons, not all of which, there be from a patient choosing to be killed, on (a) their necessarily, reflect the needs of an individual patient. doctors, (b) their carers, and (c) the family and community I am very sceptical indeed about organisations which at large? What effect would it have, and do you see it having pontificate. They have to set down rules and standards, on them? but where is the individual in their deliberations? We have heard a lot this morning about what the organisations would Dr Garland: Well, of course, one is asking for speculation - think, what the professionals would think, and I think that here, because this is not happening in my experience. if organisations oppose something that an individual patient I think that the future, essentially, is almost unknowable, wants desperately, then maybe the organisation should start but I would certainly say that it is not impossible that questioning itself about its right to represent such patients,
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Dr J Garland 18KCE SELECT COMMITTEE, WEDNESDAY, 5th MAY 2004 Oral Evidence and the organisations and other people. figures is that greater time was spent in hospice care and much of this was expended on the process of assessment, M r Downie: Just to come in on the back of that, then, interviewing and decision-making, agonising, and this may we have got something of a dichotomy here, because, at the be a reflection. moment, healthcare in general is supplied in this country In other words, I think what these figures reflect are by the state. If it were possible to introduce a system where that those who had made a very determined insistence on a person could be medically assisted to terminate their life, receiving assisted dying, were encouraged to spend much would it not make sense to have that option available carried more time in hospice than the others because this decision out by licensed practitioners or charitable organisations who it was felt needed to be investigated very thoroughly are completely outwith the Health Services, and then there and this is what the figures essentially reflect. It does not is no clash of conflict about carers and problems with the necessarily mean that they enjoyed being in the hospice. I BMA and other organisations? think that this is all community-based hospice care. It is not an institution. Dr Garland: I think this is certainly a possibility. Organisations like Dignitas in Switzerland may or may not Mrs Hannan: Right, thank you. You were talking before be verging on what you are considering. about people who made the request Would this normally be I think the important thing, certainly, is first to look at terminally-ill patients? the principles which you are engaged in looking at, at the moment, but that might possibly be an option. Dr Garland: Yes.
M r Downie: It would overcome this problem of the Mrs Hannan: Patients who would die anyway? ethics where you have a state-run organisation which is putting vast amounts of money into people's healthcare Dr Garland: I believe in Oregon it is within six months, and if there was, as I say, a route where a group could work something like that There is a time specified. We are talking independently from the Health Services it might be more... here about, and 1 understand the Committee is looking for, a I understand that is the system that they actually have in proposal which is limited to terminally-ill patients. Switzerland. Mrs Hannan: Right, so they would have the view, Dr Garland: I believe that is the case. I certainly think anyway, of death coming in - they would know that nothing that could be a possibility. could be done except terminal care, palliative care, which Mrs Hannan: Could I ask why so few people who are would lead, ultimately, to their death. terminally ill actually commit suicide themselves? Dr Garland: They would know; whether or not they Dr Garland: It is certainly very unusual. I have known would accept that, inside, is a different matter, but they would of only one case in the Isle of Man in the last three or four know intellectually, yes. years: somebody who managed to kill herself while at the old Noble’s Hospital, and she was in total despair about Mrs Hannan: Sure. Are there ever any health - 1 suppose confronting the consequences of her rapidly growing cancer. ‘health’ is the right word - reasons for people recovering in It had been proposed to her that she should go into the hospice hospice if... ? for advice and care, and she interpreted that as meaning the beginning of the end for her, and she took another option. Dr Garland: You mean the terminal illness goes into I am not saying her decision was anything to do with the remission? I have never actually seen such a case. Again, I offer of hospice care, but she found it totally impossible to do not know what the evidence is. To be honest, I think it confront the reality of increasing pain and disability. would be pretty rare, but it is possible. But it is extremely rare. I think, being human, we like to I have certainly seen people in the hospice care going cling on to hope. Every minute is precious. We do not want downhill extremely rapidly, because they did not want to be to take a major step. We hope against hope. We are incurable there. I remember a patient on the Isle of Man who I saw optimists, usually, and we hang on like grim death before a couple of years ago, who was extremely angry because the prospect of grim death, but it is certainly very surprising she was suffering severe pain from a very rapid, lymphatic - it does happen and as I have suggested here, such people cancer, and I was asked to see her because the hospice tend to be very strong-willed, very determined, perhaps, were very concerned. This was a very angry patient and her and very stubborn - maybe a profile of people in the Isle of anger was distressing all around her, and they felt it was an Man, I do not know, but the Isle of Man and Oregon may untoward and unreasonable anger. I must admit that, if I was be similar in some respects. facing such a death, I might well be angry myself, but it was felt very difficult to manage her in the hospice. Certainly, Mrs Hannan: On the bottom of page 2 of your her symptoms had flared up and become much more acute submission, you have got this where patients for assisted and she died-within a few days. One cannot say any more suicide stayed in hospice for 49 days, whereas other than that terminally-ill patients who did not choose the option, spent There are people who do not want to be in the hospice. on average 19 days in the hospice. (Dr Garland: Yes.) Do There are also, of course, many people who do and the you think that people who make this request are happier with hospice is a marvellous movement, and for 98 or 99 per cent their situation? Presumably... of people, it does a great job, but for a very small fraction there are patients who do not want to be there, who want Dr Garland: I think one thing that is reflected by those something else which they cannot have, namely assisted
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Dr J Garland Oral Evidence SELECT COMMITTEE, WEDNESDAY, 5th MAY 2004 19 KCE dying, who just want to escape from the whole process budgerigar dies. Vulnerability has spread through every area and, for them, it is extremely difficult to adapt to hospice, of life, and we do tend to perceive it as increasingly as being no matter how splendid the care is - and the care is usually vulnerable and under threat, and I think some of the most extremely splendid and excellent. important antidotes to this are openness and people being convinced that those who make laws around the country M r Rimington: If there was to be legislation on the are concerned for the rights of individuals and will respect Island, what would the safeguards that you would consider those rights. necessary for such legislation to exist? I think, to know that you are living in a democratic society, in which issues like assisted dying can be looked Dr Garland: 1 think there are a number of excellent at openly, is a very important ingredient to helping people safeguard schemes already in place in an area like Oregon. to feel less vulnerable, because they know that there are It is very clear to me that such a very important decision people, such as yourselves, who basically care about their needs to be given sufficient time and space. It is, of course, rights and their needs, and will do what they can to see that extremely difficult to discuss this in detail, because the time those are safeguarded available to patients facing death is sometimes very difficult So, I think that is a really important issue for us all to predict, but, I think, at a bare minimum, you would need a to be aware of, health professionals and politicians alike: significant period of time for reflection and discussion. You openness to discussion and debate, honesty and directness, would need a very thorough assessment of the individual, and consulting people for their opinions is not done as and of all the surrounding pressures on them, by an impartial often as it might, for these are very important antidotes for procedure, and you would need opportunity for people to vulnerability. look at alternatives, you would need a review of the existing I do take the point that it is very reasonable to ask how palliative care that was being given to make sure the optimum will this affect vulnerable people, and the answer is, I think, palliative care was being given. that we are all vulnerable to a greater or lesser extent Some So* basically, I am saying time and space, and it is of us might become or feel more vulnerable as a result of extremely important to have safeguards, and is also very any change in the law. Some of us might feel less vulnerable useful, I think, to have at least two professional advisers to the extent that we are given an extra safeguard, an extra involved, to reach agreement, and you need to be very clear right, an extra fall-back position, so I think these things may that it is a sustained and persistent wish by the patient that balance out this should take place. Mr Anderson: Just following on from Mr Rimington, Mr Rimington: Have you looked at all at the differences in if there was a choice, do you think the law should aim to the legislation between say Oregon and the Netherlands? protect a large number of vulnerable patients, or remove protection from them, for the sake of the few that feel their Dr Garland: Not in detail. There is research which has future suffering may not be relieved? been done from the legal framework, and I think I mentioned in my original written submission, there is a book by an Dr Garland: I think the law should do both. I think the author called Otlowski which looks very carefully at the legal law should seek to express a reasonable amount of concern background and I think it would be well worth, if you have and protection for the people who want reassurance, and if not already done it, somebody on behalf of the Committee appropriate safeguards were built in to a change in the law, abstracting her ideas. and the change in the law was very clearly made, and clearly There is also, I think, John Keown from the University of reflected the will of a substantial majority of people on the Cambridge, who puts a different perspective on medico-legal Island, then those who might fear, as a result of the law, their issues. Otlowski, broadly speaking, is for, Keown, broadly fear at least would be lessened speaking, is against change in the law, and I think that if you I do appreciate what you are saying: fear is a veiy have the opportunity to read and abstract these two texts, it important driver of human behaviour, and, in answer to your would be well worth doing so, because they do give very question, I would say that, basically, the law is for individuals useful background on the medico-legal, ethical frameworks as much as it is for vast masses of supposedly vulnerable which they are much better qualified to discuss than I am. people, and if the law cannot exert itself to serve individual needs, even if these needs are quite rare and may not be freely Mr Rimington: There is a lot of discussion in many of expressed, then the law is reduced and diminished as a result the submissions that we have had, and, I think, the commonly of that. The law really exists for individuals as much as it used term of ‘vulnerable’ or 'vulnerability’ - and you have does for masses of people seen as vulnerable. explored that to some extent already. I just wondered if you would care to expand on that: on what depth do you think Mr Anderson: Would you agree that the law is for people are vulnerable and how that might or might not be protection of vulnerable people? addressed through any safeguards that exist? Dr Garland: The law exists for many reasons and Dr Garland: I think vulnerability has become a kind one of those is for protection, but vulnerability can be felt of ‘in’ term in our culture, in the last few years. Stress of independent of anything the law does. There are people who all kinds experienced by all sorts of people in all sorts of may well feel vulnerable if they see something which is a circumstances. I believe, to take an extreme example, that very minor instance in their everyday life. a company that offers insurance against your pet getting I think the law does have a right to protect vulnerable sick will also for an extra premium offer to provide or to people but there also is a right to represent individuals and finance your receiving counselling, once your cat or dog or individuals’ needs, so I think there is a conflict here. I think
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Dr J Garland 20 KCE SELECT COMMITTEE, WEDNESDAY, 5th MAY 2004 Oral Evidence
the conflict may be resolvable but I do agree that there is Mr Anderson: Just one final one then, Dr Garland. In a conflict. your paper on Oregon, here, it states the relevant importance of pain as a major factor in requests has decreased M r Anderson: Could you say what limits you think significantly. I understood, from the legislation being talked society should place on an individual’s autonomy? about in the Isle of Man, that was the major reason why people were wanting voluntary euthanasia legalised, so do Dr Garland: I think that autonomy has to be exercised you not think this is quite contrary to that? in a responsible manner, so if, for example, Harold Shipman chose to exercise his autonomy, it was in a way that was Dr Garland: Not really. I think it could reflect better disgraceful and society needed to register this very clearly; hospice practice. Over the last few years in Oregon with unfortunately, it did not for quite a long time, but I think that this change in the law, the Hospice Association there reports any autonomy bears with it responsibilities, as well as rights. that they are better supported than ever, and that doctors are It is a complex matter and so I certainly think society and giving them more referrals, and this may well have an impact law does need to rein us in, in some respects. on the levels of pain reported, but in my experience, wish But regarding choosing your own dying in a considered for assisted dying does not, by any means, always link up and persistent wish with appropriate safeguards, I do not with fear or concern or actual experience of pain as such. think the law is entided to stop an individual doing that Pain is a very subjective experience; it is very difficult to measure and assess. There is a whole complex of reasons M r Anderson: You touched on Dr Shipman. Do you why people seek assisted dying; pain is one of them, but is think that if legislation was introduced, it would be more not by any means the only one. difficult for the authorities to discern between what is legal and what is murder? M r Anderson: So what you are saying, effectively, then, is that the scope of voluntary euthanasia should be Dr Garland: I think in some respects it may well be widened easier because at the moment there are a lot of grey areas, even within the existing law and areas of uncertainty and Dr Garland: I think the scope of voluntary euthanasia debate. For example, what happens when somebody who should be for people who are terminally ill who wish, is terminally ill becomes increasingly weak and frail? At persistently and repeatedly, for assisted dying, who give some point, a decision may well be made to increase their clear reasons for that, who do not appear to be mentally medication. Having been on a morphine drip myself in the incompetent I think that the scope for voluntary euthanasia course of physical treatment, a few years ago, I am well should be very carefully controlled. I do not think that it aware of the strange things that morphine can do to your should be widened in any major way. consciousness and awareness of what goes on around you. During the process of terminal illness, in some cases M r Anderson: Are you saying it should be regardless a decision is made to increase the medication to achieve of pain? more profound sedation. This decision can be taken in the absence of consulting the patient, if the patient is so doped Dr Garland: Not regardless of pain; I think pain should and befuddled that they cannot respond, so the decision is be a factor, but what I am saying is that people focus perhaps taken and it is not uncommon for this to be done. overmuch on pain, and the argument is: ‘If only we could That, in itself, some people consider is a questionable get pain management right, then this whole bogey of these procedure. It is open to some doubt and uncertainty, so I am people wanting assisted dying may well just disappear and saying that within the existing law there is already doubt and creep away’. Pain is a factor, but it is not the only factor; uncertainty, and I think that, if the law could be clarified with psychological pain is as important sometimes as physical appropriate safeguards, there would be less uncertainty, it pain, and there are many other factors involved. would be a lot clearer than it is now. I am certainly not downplaying pain, but I am just saying Now, there are a number of grey areas; it is very apparent that pain is one of a number of factors influencing people to me there are grey areas within the existing law. to seek assisted dying, and one should not just limit one’s perspective only to pain - but it is very important M r Anderson: And would you agree that there is very little evidence of doctors, practising, being prosecuted in Mr Anderson: If I might continue, then, do you think these grey areas? that doctors ever make mistakes in diagnosis in determining, in predicting the life span left to a patient? Dr Garland; Practising being put... ? Dr Garland: Well, I know somebody now, a friend of M r Anderson: There is very little evidence of doctors mine in the Isle of Man, who is skipping around like a spring being prosecuted where they seem to go over the line in lamb, and a couple of months ago he was told perhaps he this grey area. should seek a refund on his holiday at Easter because he would not live to enjoy the holiday. So, doctors can make Dr Garland: I am really not qualified to comment on mistakes. that, because I have not followed this kind of evidence very thoroughly. I am just saying that I am aware of grey areas. I Mr Anderson: And would you agree that depression in am not aware of the response that the law habitually makes terminal illness is treatable? to these infringements; it may vary according to area and judgement. Dr Garland: If depression is a factor, it is sometimes
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Dr J Garland Oral Evidence SELECT COMMITTEE, WEDNESDAY, 5th MAY 2004 2IKCE treatable, sometimes not. Some depression is refractory not the sort of thing that people do, or should do, to express to treatment, whether it is in terminal illness or in any a determined wish to die, with somebody to help them, other setting. Not all clinical depression is amenable to I have been with people who have expressed this wish, in treatment spite of knowing the law prohibits it, and, in my experience, they were not clinically depressed - they may have become Mr Anderson: Would you say that depression in terminal so, in due course, when it sank in upon them that their wishes illness is under-diagnosed? could not be met Disappointment and depression are often allied, but I do feel it is an assumption that is easy to make Dr Garland: I do not think so, not in my experience, that, ipso facto, if somebody seriously wants to die, they must because most people are well aware that a number of the be depressed and, therefore, the depression must be treated, key diagnostic features which influence people to diagnose then make it better, then everything is going to be fine. I do depression are also present in severe, long-term debilitating not think it is that simple. illness, and that, when someone appears to be say lethargic, unmotivated, preoccupied with negative thoughts, it is not Mr Anderson: Do you think it is discriminatory, then, necessarily reflecting clinical depression, but it is reflecting between allowing somebody to have voluntary euthanasia the reality of their physical status. and somebody that is not, when the line is so fine between It is veiy difficult indeed to disentangle mind and body. diagnosis of depression or mental competency? I spent about 40 years trying to do it and, obviously, both are important, but I would not necessarily accept that people Dr Garland: I think it could be regarded as discriminatory, do have any major difficulty in diagnosing depression but if you consider that mental competence and depression in terminal illness, because many of them are aware that need to be investigated, before a wish to be for assisted the presentation of a patient is a mixture of features often dying could be seriously looked at, then you have to have including a realistic reflection of their physical condition as modes of assessment and all assessment is discriminatory. much as any mental distress - it is very difficult to separate It separates out some people from others, and no assessment them out No, I think that depression may be speculated on is 100 per cent reliable; we simply do our best with the tools in many cases, but careful diagnosticians are usually able available. The alternative would be to say that we must not to determine whether or not clinical depression is present assess anybody, because we cannot be right 100 per cent of They may well attempt to treat it - it will not always be the time, and we are afraid of separating people out, into successful. more than one group, and, really, we are not God, we are only human, we do what we can with the tools available. M r Anderson: Do depressed people, then, often express So, I do not think it is necessarily discriminatoiy. I think a wish to die? any process of assessment does involve a certain degree of separation. I admit that this assessment cannot always be Dr Garland: No, in my experience not. People who are 100 per cent reliable; we simply have to do our best with clinically depressed sometimes express this wish but very what we have got often not, and sometimes they do kill themselves, but very often not, because people who are depressed, actually, are so The Chairman: Dr Garland, can I just ask you a few wrapped up in their depression, they are almost clinging to questions? Is patient-assisted suicide, in your opinion, it, and find it very difficult to conceive they can do anything complementary to the hospice care system? about it; they feel powerless, so, therefore, many of them exclude the idea of suicide. They may mention it, because it Dr Garland: Well, it is complementary in Oregon, and, gets attention from other people around them, but few people, I suppose, it is an integral part of it. To a certain extent, it is in my experience, who have been clinically depressed then widely recognised and accepted, but what I have suggested proceed to kill themselves. is that hospice care is excellent for very many people, but there are others for whom an alternative option could be Mr Anderson: How can you be sure of the difference very advantageous, so I think one would say it could well between depression and mental competency? be complementary. I understand and respect the statement, I think, that the Dr Garland: It is extremely difficult There are ways hospice has already made, that their ethos would not permit and means of assessing mental competency, there are ways them to entertain assisted dying. I can understand that and means of assessing depression: neither are 100 per cent reliable in every single case. There will always be M r Anderson: But the hospice or care system-comfort disagreement, but what I am maintaining is that the literature system, sorry - in Oregon that you described, does that suggests that many people who are approaching death do recognise and acknowledge the views of patients who, for not necessarily become depressed as a result of that, many whatever reason, are opposed to the principle of patient-. people who may express ideas that sound depressing on the assisted suicide? surface of it are reflecting their own physical state and their own realistic uncertainties. Dr Garland: Oh, yes Also, I think it is important to try to understand this, that there is still, I think - and I probably have not shaken the Mr Anderson: And by the same token, does it opinions of some members of the Committee on this - there acknowledge and recognise the views of health workers who is still the widespread, underlying feeling that if somebody are opposed to the principle of patient-assisted suicide? really expresses a wish to die, this must reflect some kind of serious pathology, they must be mentally ill, because it is Dr Garland: Yes, it certainly does. In the research I have
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Dr J Garland 22KCE SELECT COMMITTEE, WEDNESDAY, 5th MAY 2004 Oral Evidence
mentioned, only one of more than 300 welfare workers said soundness versus unsoundness is, obviously, important in that they would be opposed, in almost every conceivable law, but in practice very difficult to determine. instance, to advising somebody on assisted suicide. In practice, I would need to have a conversation with somebody over perhaps a period of a number of hours spread The Chairman: So, it is a model that covers that over a number of days and I would need to ask a number spectrum? of professional questions and I would need to consult with their permission with people close to them who will give a Dr Garland: It appears to do so, yes. different perspective on their behaviour, so I think you cannot assess the soundness of somebody’s mind without talking to The Chairman: And is there any experience in Oregon, their nearest and dearest, and their social support system, as with the safeguards they have, with any abuse of vulnerable well as to themselves. groups, as we have heard them described earlier? I think with the kind of dialogue which is clear and coherent, one can be reasonably certain and confident at the Dr Garland: None that I am aware of. As I already said end of several days of interviewing and formal assessment, it is not inconceivable that people could feel under pressure that one has a picture, but this is not something that can be but if anything, the more socially advantaged groups seem done in five minutes. to be the most passing in their wish for assisted dying, but I do not know whether that answers the question, but it it is a very small number, we are talking about, maybe a is extremely difficult, Mr Downie, to really pin down what fraction of one per cent. ‘sound mind* actually is.
Mr Anderson: Given.the lack of legislation here and in M r Downie: Going back to the living will issue, then, the UK to allow patient-assisted suicide or the like, has your obviously, people make provisions for their future. If a professional practice been influenced negatively, i.e. have clause was to be put in that should they be diagnosed with you been involved in less holistic or patient-centred care than a terminal illness, it is their wish that they should be able to you would ideally have wished to have provided? have assisted dying?
Dr Garland: Well, certainly, I have in many different Dr Garland: I think that might come if there is a change cases, I have dealt with the casualties of the system: a chap in the law. However it would obviate the need, if possible, who, when he was refused medical assistance, who was to have an up to date assessment closer to their death, if chronically ill and in hospice care, when I saw him, tried to that were possible. In other words, if people do change their kill himself. He succeeded in blowing away half of his face, minds over time, and even with a living will and assisted and I was trying in more ways than one to help him pick up directive, if possible, but it is not always possible, and if it the pieces, so I have seen the casualties of the system. was not possible, then certainly it is conceivable that one I have also seen people grasp at all sorts of straws of should be guided by the advance directive, if somebody had a quasi-medical holistic care, some very fringe medical opted for assisted dying. attempts or systems of counselling or spiritual support which were not grounded in any very clear principles. I think people M r Downie: My problem with this is, as I indicated grasp at all sorts of straws. earlier, I can understand that being set up and the person having a living will, but my problem, right from day one, Mr Downie: I would just like to ask you, as a with this is that, when you are running a state health system, psychologist, one of the basic points of English law, really. it is very difficult to find a way where the systems overlap. A lot of the decisions made in these sorts of areas depend Because, if you look at what happens in the United States, on those words 'being of sound mind’. I would have liked, quite clearly medicine is a private issue. These clinics that perhaps, if you could explain to us, when you would feel that have been set up, are on a private basis; they are not state a person is in a position to be of a sound mind and, therefore, owned and operated. able to make a decision about the termination of his life, or The same situation is in place, 1 believe, in Switzerland. assisted dying, before he gets into the ethos of morphine and I am not entirely sure what happens in Belgium, but there, shock, and all sorts of other things like that. again, medicine is a thing that is purchased, or you take insurance for; it is not part of the state-run system and that Dr Garland: Well, I think there are many ways of is where I think we have to be clear as to how these two approaching this. One way would be to encourage more areas marry up, really, so that the state system really is not people to make advance directives of living wills about their compromised in it future care, and the process of this. It would be very helpful for them to have an independent counsellor or supporter Dr Garland: I think the Netherlands may be the nearest who would discuss with them, and with their lawyers the thing to the UK, if you are looking for a comparison. I do not implications of this, and for people to reflect on their dying know very much about the way things are, currently, working in advance of the process. out in the Netherlands regarding the overall dynamics of their I think that is very important, in other words, to be able healthcare system, but it would be well worth seeking the to issue and reason out and frame directives as to what they opinion of someone who does know better than us about the wish to do. I find it not easy to grasp the concept of soundness lessons that may well be learned in the Netherlands, where or unsound mind, myself. I do not know anybody whose I think there is a mixture of private care and state-funded mind is 100 per cent sound, to the standard that we all can be care. irrational, we all have our prejudices, we all have our fixed beliefs, we all have our skittish moments, and the notion of M r Downie: Okay, thank you.
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Dr J Garland Oral Evidence SELECT COMMITTEE, WEDNESDAY, 5th MAY 2004 23 KCE
The Chairman: We appreciate your forbearance, Dr that is a change, that people will be able to accept and Garland, but I think we are coming towards the end. recognise but, being the Isle of Man, there will be lots of people who will criticise and condemn you, whatever you Dr Garland: I appreciate your forbearance, too, because do - if you do nothing, if you do something et cetera - but after about ten minutes of me, people usually feel they have I think you have an enviable opportunity. I do hope you had enough and want to hide under the table, so thank you have the courage to take it I rather suspect you have, but I very much. would dearly love to be able to see what the result actually is when your report comes out, and I wish you all the best It The Chairman: If we could turn again to Mr Anderson is certainly a very difficult task. Thank you very much. if we could. The Chairman: Well, that concludes this morning. We M r Anderson: You mentioned, extensively, the Oregon will now be adjourning now until two o’clock, back in this situation. Have you had any knowledge of the Dutch room, for the next witness. Thank you. experience, where it is said to be wider than previously anticipated - in fact, it touches on the slippery slope argument? Have you heard of evidence of that? The Committee adjourned at 12.36 p.m. and resumed at 2.00 p.m. Dr Garland: I have heard evidence on both sides regarding that As with so much research, there appear to be conflicting findings and how the results are being interpreted, so from the studies that I have seen and read, I would feel Procedural that there are mixed findings, and, at the moment, the picture is still inconclusive. Other people might well disagree with The Chairman: Right, well, fastyrmie, good afternoon me, but I do hope you have the opportunity to research or everybody. This is the second sitting of the first day of taking investigate this for yourselves as a Committee, what is the evidence for the Select Committee of the House of Keys on actual picture. Voluntary Euthanasia. We are not limited to issues about The slippery slope is a concept that is often invoked and voluntary euthanasia, it is about patient-assisted suicide people have very realistic concern about this and it would be and all die associated matters, but that is the title of the very interesting to know clearly, if one can, what the picture Committee. is like in the Netherlands, but my awareness is that there are For the sake of Hansard, if I just introduce everybody, mixed findings and conflicting results. perhaps for Mr Cusworth’s sake, if you do not know all of us. At the far end we have colleagues, Mr Rimington, Mr Mr Anderson: From what Mr Downie was saying, do Anderson, Mr Downie, I amQuintin Gill, this is Mrs Hannan you agree that it is more easy to legislate and police if it is and we are all Members of the House of Keys; and this is the done in the private sector rather than incorporating into the Secretary of the House, Mr Malachy Comwell-Kelly. National Health Service? If I could just remind you that we are being recorded for Hansard, so, perhaps, if, for the sake of clarity, we could Dr Garland: I think that is a very difficult issue. I have speak clearly. Mrs Newton, I do not know if, by joining us not had much experience of working in the private sector, at the front, you would like to offer any opinion during the I have got to admit. I have been an NHS person nearly all session. If that is the case, could I ask that we do not talk my life, with one or two brief interludes, so I really do not over one another, just so we can catch everything that is feel qualified to say. I am sorry, but I would not be sure said, okay? about that. What we had this morning was another person giving evidence, and he started with a brief presentation, about a The Chairman: Again, thank you very much, Dr quarter of an hour or so, so the last thing we want to do is, Garland, and if we could extend the same opportunity: is obviously, cut short your opportunity to give us your full there anything that you wanted to conclude with, or to go opinions, but we are mindful of the clock at the same time. back over for us?
Dr Garland: Well I suppose just to say that I think the Committee does have the opportunity, an enviable EVIDENCE OF MR P CUSWORTH opportunity - you might not agree with me - to look at AND MRS NEWTON this issue carefully, and in an open-minded way, and to see whether a choice can be made that would actually reflect the The Chairman: So, having said that, could we hand special nature of the Isle of Man. over to you, Mr Cusworth, and you could, perhaps, introduce We have heard a lot from everybody this morning about yourself, your organisation and can lead in from there. the nature of the Isle of Man and its people and its close- You do not need to stand. knit community, and I think there is a way of resolving this situation, with some change, that would actually strengthen Mr Cnsworth: My name is Patrick Cusworth. I am a the identity of the Isle of Man, and make people feel more research and public relations director for the pro-life charity, proud to be here, because this is a community which LIFE. thinks for itself. I think I would like to leave you with that I would like to, firstly, thank the Committee and, certainly, thought Mr Chairman, for allowing me to speak in representation of I believe you have an opportunity to engineer something the resident members of the Isle of Man. As I am sure most
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Dr J Garland Procedural House of Keys Select Committee on Voluntary Euthanasia - Evidence of Mr P Cusworth and Mrs Newton 24KCE SELECT COMMITTEE, WEDNESDAY, 5th MAY 2004 Oral Evidence persons here present will be aware, LIFE is an international anyway, went not only against the guidelines that had been charity which exists to promote and provide for the respect issued by the Royal Dutch Medical Association but also for all human life, from the point of fertilisation until natural against the legal principle established by the Dutch Supreme death. We make no exceptions. Court, in the case of Dr Chabot, where it was held that It is for this reason that we believe that the proposals made doctors should not perform any form of euthanasia when to permit either voluntary euthanasia or physician-assisted the alternative of palliative treatment was available. To suicide will inevitably and inexorably lead to increased make matters even worse, however, according to the same danger towards: patients refusing voluntary euthanasia anonymous survey, as many as 59 per cent of cases where or a physician-assisted suicide; patients consenting to euthanasia had been performed, had gone unreported that voluntary euthanasia or physician-assisted suicide; the year-1995. medical profession itself, and, most specifically, the current Various explanations have been proffered as to why such relationship between the attending doctor and the patient a huge majority of cases have gone unreported by doctors, Whilst we understand both the motivation and well including the suggestion that doctors might fail to report, as meaning behind many of those who support a change in they find the reporting procedure ‘daunting and burdensome’. the law, examples throughout the world have demonstrated Yet in the same survey, a further 30 per cent of doctors stated beyond question, we feel, that as Professor Lord McColl, that they had not reported such cases, because they had failed a member of both the previous and the current UK House to observe the requirements for permissible euthanasia, and of Lords Select Committee investigating the safety and 12 per cent of doctors because they felt that euthanasia was practicability of euthanasia in the Netherlands, stated, on a private matter between doctor and patient his return from the Netherlands: . Either way, however, it would seem that despite what many pro-euthanasia advocates have referred to as ‘strict ‘Our visit convinced us that the practice of euthanasia or physician» guidelines’ governing the practice of either voluntary assisted suicide would be impossible to police and there would be euthanasia or assisted suicide once again we are drawn back abuses*. to Professor Lord McColl’s quote that Many proponents of euthanasia have attempted to dismiss ‘Euthanasia would certainty be impossible to police, and there would the concept of a ‘slippery slope*, that is, the argument that be abuses'. states that legalised voluntary euthanasia would logically and inevitably lead to practices of non-voluntary euthanasia With regard to probably the most sobering statistic from - where the patient has either not requested or consented this survey, euthanasia enthusiasts were unquestionably to being ‘euthanised’ - or involuntary euthanasia - where disappointed to notice that cases of non-voluntary and euthanasia was carried out specifically against the patient’s involuntary euthanasia had dropped only slightly, to 23 per wishes. cent, so between one in four and five patients were still being The increasing body of evidence which has emerged from killed without request or consent, despite the tightening of the Netherlands over the past 15 yean demonstrates the full procedures, which in the first place had been proffered as extent to which the guidelines have been breached and the being the tightest controls in the world. clear lack of control on the part of the authorities established In the light of such statistics, perhaps we would be wise to govern the practice of euthanasia and assisted suicide. Yet to heed the warning given by Dr Peter Hildering, President this disturbing lack of control still appears lost on many. of the Netherlands Physicians’ League on a visit to the UK The full impact of the Remmelink reports, which of two years ago that: course, as all, I am sure, will realise, are anonymous surveys carried out by practitioners of euthanasia in the Netherlands, 'One can either open the door to euthanasia or keep it shut There is has indicated that euthanasia is, if anything, slipping even no middle ground If you open the door even a little, soon it will be further out of control. wide open.’ The first survey, which took place in 1991, outlined three areas of procedural abuse that were reported to have been Furthermore, many proponents of euthanasia in the taking place in the Netherlands, namely: Netherlands have not only admitted to the fact that the slippery slope inevitably leads to forms of non- and ‘The widespread practice of non-voluntary euthanasia; the use of involuntary euthanasia being performed, but have actively euthanasia even when doctors felt that palliative care was a viable supported it As Dr Johannes van Delden, himself a leading alternative; and the practice by doctors of illegally certifying euthanasia supporter and practitioner of euthanasia and assisted suicide deaths as deaths by “natural causes”, instead of reporting them as in the Netherlands, has admitted: required by the guidelines to the authorities.’ ‘Is it not tme that once one accepts euthanasia and assisted suicide, One particularly disturbing feature which was reported the principle o f univcrsability forces one to accept termination of life by this survey was the fact that 27 per cent - that is, more without explicit request, at least in some circumstances, as well? In our than a quarter - of cases where euthanasia was carried out, view, the answer to this question must be affirmative*. this was deemed to be either non-voluntary, or actually involuntary, in other words, where the patient had not given To follow this chilling prediction to its logical conclusion, either express consent or request to die. therefore, the practice of non- and involuntary euthanasia Five years later, the second Remmelink report was will have sinister overtones for any patient unable to published, indicating similarly disturbing figures as the communicate his or her own wishes to the attending doctor. previous report. For example, in 17 per cent of the cases For example, neonates, patients lacking capacity to consent where euthanasia had been carried out, there were treatment or refuse treatment, or patients whose ability to communicate alternatives. The fact that euthanasia had been carried out, vocally are surely left in an intensely vulnerable position,
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Mr P Cusworth and Mrs Newton Oral Evidence SELECT COMMITTEE, WEDNESDAY, 5th MAY 2004 25 KCE and face the prospect of their lives being terminated on all indicated their belief that: the basis of another person’s subjective view of his or her ‘quality of life’. ‘euthanasia is a minority interest amongst the terminally ill - it is only Dutch guidelines concerning euthanasia or assisted those who are healthy who want' suicide also currently specify that the doctor considering treatment alternatives should engage in formal consultation such proposals to become law. and not merely an informal discussion with a colleague. One of the terms that is widely used by groups such as the According to the second Remmelink survey, doctors had Voluntary Euthanasia Society is that of ‘death with dignity’. discussed the case with a colleague in 92 per cent of cases. However, as one leading proponent of legalised euthanasia However, in 13 percent of these cases the discussion did not or assisted suicide has argued that such a change in the law supposedly: amount to a full consultation. Other figures also indicated that, while consultation took place in 99 per cent of reported ‘offers the opportunity to select the time and manner of one’s dying in cases - and let us not forget that we are dealing with only order to secure a peaceful death, unencumbered by intrusive medical 41 per cent of cases of euthanasia reported overall - it took technology. Such a death is perceived as inherently dignified.’ place only in 18 per cent of cases that had gone unreported. In addition, even when consultation did take place, in the Unsurprisingly, however, results from clinical practice majority of cases this was with a physician living locally, throughout the world have suggested that the process of and the most important reason given for consultation was to assisted dying is very much less than the optimal ‘peaceful gauge views on life-ending decisions, whereas expertise on death’ that the author, I would submit, rather naively assumes palliative treatment was hardly mentioned, if at all. voluntaiy euthanasia to guarantee. It would, therefore, appear to be impossible to establish For example, one such report on the Dutch experience an effective, regulatory framework for either euthanasia or published in the New England Journal of Medicine has assisted suicide. On the balance of such damning reports demonstrated that around 1 in 20, that is 5 per cent, of patients of the system of regulating the practice of euthanasia and who opted for euthanasia, and 1 in 10, that is, 10 per cent, assisted suicide, Dr Nigel Sykes who is medical director of St who opted for assisted suicide have suffered from what has Christopher’s Hospice in London argued that such proposals been referred to in the report as so-called ‘complications’. would be ‘dangerous* and would: Such complications include the patients suffering physical symptoms such as severe pain, nausea, vomiting, loss of ‘.. .progress to mental illness. Euthanasia without express request would bowel control, panic, fits and spasms during the attempted inevitably follow and patients would be made to think that euthanasia euthanasia or assisted suicide resulting, obviously, in great is the decent thing to do.’ pain and discomfort for the patient, and, of course, great It is the latter suggestion that is often cause of great outcry distress for the attending relatives. among pro-euthanasia advocates eager to decry the notion Further technical difficulties associated with both that legalisation of voluntary euthanasia or assisted suicide procedures were reported, such as problems finding a vein would involve patients not wanting to be burdens to others, for the injection to be administered, an inability on the and, therefore, supposedly choosing euthanasia on this basis. patient’s part to swallow or hold down the medication and However, an illuminating article written by John Beloff, so-called ‘problems with completion’. These problems can who is the chairman of the Voluntary Euthanasia Society in include the patient waking up from an induced coma or an Scotland, possibly illustrates this very equally devastating ‘undesirably long time to reach death’. Once again, while slippery slope effect arguing: such problems with completion took place in 5 per cent, of cases involving euthanasia, they took place in 15 per cent ‘My answer would be, therefore, that if there is a duty to die, it is one of cases involving assisted suicide, that is, over one in every that arises from our basic human predicament, the fact that we are seven patients. To support this figure, a study of physician- dependent upon others, and it is a duty we owe to those we cherish.’ assisted suicide taking place in the United States in Oregon, Dr Emanuel and others reported that assisted suicide failed When such a perceived ‘right to die ’ can become a social in three out of every twenty cases described by American ‘duty to die’ on the part of society or the patient’s family or oncologists. carers, advocated even by those who lobby for ‘death with A very relevant question at this point therefore would dignity’, then, as journalist Matthew Parris argues: be to query just why the statistics for such complications ‘If one man’s Right to Die gives another the Right to Kill, then this Right and difficulties in completion both potentially resulting in to KiJl logically means giving the government the right to withdraw severe adverse and distressing symptoms for all concerned Permission to Live.’ are so much higher in the cases of physician-assisted suicide than where euthanasia is performed. One explanation that Given the level of abuse that has taken and, clearly, is has been offered is that, even with medical assistance and taking place in the Netherlands and Oregon, and while it advice, the average patient’s obvious lack of expertise in was temporarily legal in territories in Australia, the intended performing a procedure leading to his or her own death, safeguards set out are insufficient to protect the far greater combined with an element of near certain trepidation would number of patients who would be placed at grave risk, were be likely to affect the performance of such a procedure. these proposals to become law. For this reason, many of However, regardless of the reasons as to why greater those who would be affected most of all by such proposals difficulties do occur in cases of physician-assisted suicide have already united in their opposition to it: the Disability than in euthanasia, a vital.point regarding the stated proposals Rights Commission, Disability Awareness in Action, No must be highlighted and that is that the proposals that I have Less Human and Help the Aged, all international charities seen anyway have specifically focused on the legalisation of supporting the right to live of the intensely vulnerable have physician-assisted suicide as opposed merely to voluntary
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Mr P Cusworth and Mrs Newton 26 KCE SELECT COMMITTEE, WEDNESDAY, 5th MAY 2004 Oral Evidence euthanasia. It would be more reliable to assume, therefore, would refuse to perform it that if these were the proposals that were adopted, potential Not one single palliative care doctor who responded difficulties such as those I have mentioned would be likely to the survey said that they would be prepared to practise to be realised in the higher bracket, if not in even greater euthanasia or assisted suicide. A 56 per cent majority also numbers of adverse symptoms taking place. stated their belief that it would be impossible to set out Perhaps, due to the added emotional pressure placed safe boundaries to euthanasia compared to 37 percent who upon the doctor in such scenarios, there can be little surprise disagreed. Perhaps Professor Tim Maughan, the director that in 21 of the reported 114 cases in which the doctor’s of the Wales Cancer Trials Network at Cardiff University, original intention had been merely to provide assistance explains the reasoning behind the apparent rejection of with suicide, the attending physician decided to administer voluntary euthanasia and assisted suicide on the part of the lethal medication himself. In just a quarter of cases, doctors, when he put it simply that: therefore, the attending physician had been forced to take part, however willingly or unwillingly, in the practice of ‘this is not what wc became doctors to do*. euthanasia, transforming the act of physician-assisted suicide into one of active euthanasia. But Dr Richard Lamerton also propounds that to It might be argued that in cases of physician-assisted bastardise the medical practice, by permitting doctors to suicide, the element of patient autonomy is increased as it is carry out the very opposite of healing their patients would at least, in theory, the patient who takes the final and active also have a profound effect on the doctor-patient relationship steps to terminate life, thereby removing at least an element as it currently stands. He argues that, of responsibility for the patient’s death from the attending doctor. However, given that in both the two studies quoted, as ‘Most doctors know that if they killed people whom they found it difficult to treat or whose condition they found distressing, no one well as others, in just under a quarter of cases of physician- . would feel safe with them again. In the Netherlands, where some do assisted suicide with the doctor feeling obliged to administer kill patients - with or without their consent - 1 have heard of elderly the final lethal medication, transforming, as I have said, the people refilsmg medical attention or hospitalisation for fear of falling act into active euthanasia, it would appear likely that a similar foul of the physician* effect would take place here in the Isle of Man, if merely physician-assisted suicide were to become law. The same survey outlined the fact that the vast majority In other words, while physician-assisted suicide alone of doctors participating in the survey support greater would be legal, in cases of complications, technical development in both hospice and geriatric care. The survey difficulties or problems with completion, the attending doctor revealed that overall, 66 per cent of doctors considered that would be under enormous pressure to carry out euthanasia the pressure for euthanasia would be lessened if there were - an act which supposedly would be both illegal and also more resources for the hospice movement, whereas 22 per one which the doctor may well have a profound personal cent did not agree and only 12 per cent were undecided objection towards. The cynical question one might raise at However, less than half of those who do support this point is whether these proposals were actually intending euthanasia or assisted suicide felt that developments in the to introduce full euthanasia via piecemeal means by forcing hospice movement would have any effects compared with the medical profession to accept physician-assisted suicide almost three out of four doctors opposed to these practices. and bringing in full euthanasia later on. Perhaps unsurprisingly again, palliative care doctors were Before I comment, however, on the opinions of the the most supportive of increased resources for hospices. medical profession, themselves, on the prospect of physician- A recent resolution passed by the World Health assisted suicide being forced upon them in this way, I would, Association condemned euthanasia as ‘unethical’ and: finally, like to discuss one aspect of the Groenewoud study, ‘contrary to basic ethical principles of mcdical practice and must be which also highlighted a further disturbing trend amongst condemned by the medical profession.' practitioners of euthanasia and physician-assisted suicide in the Netherlands. In 384 cases, where euthanasia was This would appear to underline the fact that it is not just administered - that is, 72 per cent - the physician who doctors based in the UK or the Isle of Man who are opposed completed the interview was present, continuously, from the to the legalisation of either euthanasia or physician-assisted time that the first drug was administered until the patient's suicide. There is, in fact, unanimity around the world that death. However, this, obviously, means that in 28 percent he both are contrary to the aims of the medical profession was not, and in 10 cases - that is, 2 per cent - the doctor was because neither can be controlled. not present at all, while euthanasia was being administered Besides some of the political arguments surrounding Instead, a colleague, nurse or family member administered these proposals, however, much of the recent empirical data the lethal medication. In cases where physician-assisted exposes just how irrelevant - and in many circumstances suicide took place, the attending doctor was continuously actually counterproductive - the allowance of euthanasia or present in 52 per cent of cases, and so, in 48 per cent of assisted suicide is for ensuring high-quality care at the end cases he was not of life. As one leading author has commented, It is for reasons such as these, that in last year’s vitally important poll of British doctors, that is, doctors practising ‘Time, resources and energy are always scarce. Focussing on euthanasia in the UK - carried out by the Opinion in Research and and physician assisted suicide means diverting effort away from the more mundane, but consequential activities necessary to improve end- Business, through the doctors.netuk website - 61 per cent of-life care for the 90% or more of dying patients who will never even of doctors stated that they do not want euthanasia legalised, vaguely desire euthanasia*. with a further 13 per cent undecided. Most doctors are so opposed, some 76 per cent, that they say that, even if Similarly, it is interesting to note that when the US State of euthanasia or assisted suicide were to become legal, they Oregon legalised physician-assisted suicide in the Death with
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Mr P Cusworth and Mrs Newton Oral Evidence SELECT COMMITTEE, WEDNESDAY, 5th MAY 2004 27 KCE
Dignity Act, a reinterpretation of the state-funded healthcare patient - something which is as vital in the treatment, both system was made to allow for the provision of a euthanasia of those with terminal conditions as it is obvious. programme. However, palliative care treatments and hospice While we understand both the motivation and well- care were to be strictly rationed and cost analysed. As a result meaning behind many of those who support a change of legalised euthanasia and physician-assisted suicide, the in the law, examples throughout the world we feel have hospice movement and palliative treatment facilities have demonstrated beyond question that, once again, as Professor been left devastated, in both states, as a direct result Lord McColl stated, euthanasia would be impossible to As Dame Cecily Saunders, founder of probably the police and there would be abuses. worldwide hospice movement, has stated previously, For these reasons and many more, LIFE Isle of Man euthanasia in the Netherlands has left the hospice movement believes that such a change to allow voluntary euthanasia non-existent or physician-assisted suicide would be bad for patients, Doctor Ben Zylicz, a general practitioner in the bad for families and bad for the physicians who would Netherlands, goes even further than this, arguing that: effectively be forced to participate in a procedure which they have, overwhelmingly, stated that they consider to 'Euthanasia in the Netherlands has proven detrimental to the practice be unconscionable. What patients need, in contrast, is an of medicine, and is usually avoidable... if you accept euthanasia as affirmation of their own inherent dignity as human beings a solution to difficult and unresolved problems in palliative care, you and increased support to allow them to live with dignity; not will never learn anything’. efforts which, however well meaning, will serve only to take away their right to live. Professor Robert George, of the Association of Palliative Medicine, has stated: The Chairman: Thank you very much. May I ask before the next question. I notice that Mr Cusworth has read the ‘We’re good at what we do, but we’re not as good as we could be and statement, which I take it, was read closely. It would assist we’re certainly not as good as we should be’. ■ the Hansard transcription if we, with your leave, might have Therefore, the sort of things which we as a society, a copy of that particularly here on the Isle of Man, should surely be M r Cusvrorth: I can certainly produce several copies investigating, is the prospect of improving services for for you. patients at the end of life. Needed reforms include training physicians, nurses and other health providers to communicate The Clerk;. Thank you very much. better with dying patients, to manage pain, anorexia, insomnia, fatigue and other physical symptoms better. They The Chairman: Mr Cusworth, thank you for that also include improving - and where necessary developing Mrs Newton, as a member of LIFE on the Isle of Man, - hospital-based, palliative care units and consultation is there anything you wish to add? services. Importantly, if we want to facilitate dying at home, we need better systems for co-ordinating and delivering Mrs Newton: I would underline what Mr Cusworth has palliative care to terminally-ill patients at home. said about the palliative care on the Island: that we are going I have been made very aware during my stay here by to such a great trouble and time to raise money, the people members, not only of LIFE Isle of Man, but other members of the Isle of Man, for the Hospice through the ‘Mighty who do not represent this organisation, expressing their Oak Appeal', as you said, and, as we have heard, in other gratitude for the way palliative care has progressed on countries, funding, in fact, has been taken away in the hospice the Island, mainly through dedicated volunteers raising movement where euthanasia has been legalised. financial support, particularly for the upcoming Mighty My second point is also as a Manx person. I am very Oak Appeal. Again, there is clear evidence in the way concerned because I have heard a number of people say to money is being raised for the new hospice, that the need for me that the Isle of Man will become a dumping ground for greater governmental support for this hospice is there. The this kind of thing, and this horrifies me to think that the Isle introduction of a Euthanasia Bill, however, would certainly of Man will be thought of in such a way. denigrate the wonderful work of the hospice movement, both on the Isle of Man and in the United Kingdom. The Chairman: But otherwise? In conclusion, therefore, whilst it remains questionable whether there is any system in the world that can fully Mrs Newton: I just endorse. address the needs and concerns felt on the part of patients suffering from terminal illness, what is clear is the fact that The Chairman: You wanted to associate yourself with euthanasia does not come anywhere near to addressing the comments. these needs; quite the opposite. A legalisation of voluntary euthanasia or physician-assisted suicide will, unquestionably, Mrs Newton: Yes, I endorse them. place patients already in an intensely vulnerable state in an even more vulnerable position of dependency, not in terms The Chairman: Could I ask how many people are of physical and emotional care from those whose very role members of LIFE Isle of Man? it is to provide such support and assistance, but dependency in terms of their very right to live. Adoption of the proposed Mrs Newton: We have between 50 and 60. legislation will not allow death with dignity, as many of the supporters of change have argued, but in many cases The Chairman: Across the Island? will actually preclude this. It will also place under perhaps inexorable pressure the relationship between doctor and Mrs Newton: Yes.
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Mr P Cusworth and Mrs Newton 28 KCE SELECT COMMITTEE, WEDNESDAY, 5th MAY 2004 Oral Evidence
The Chairman: Just on the point that you associated The Chairman: Is there any more you want to add to yourself there, are you formally speaking on behalf of the that? ‘Mighty Oak Appeal*? M r Cusworth: Well, if I can point out once again that M r Cusworth: No, I am not physician-assisted suicide, particularly in the state of Oregon, was provided under Oregon’s medicaid programme. In other Mrs Newton: No, no. words, provided free of charge, whereas the vast majority of palliative care, palliative treatment and hospice care had not The Chairman: But both of you made comments that only been increasingly budgeted, but patients were, in the you were associating your interests and theirs as the same. majority of cases, required to submit, that is, around three quarters of cases, which I can substantiate, patients were M r Cusworth; I would state that one of the interests of requested to fund either their entire hospice bill or at least a LIFE has been to provide two baby hospices in the United substantial amount of it Kingdom, in order to cater for probably tiie most vulnerable patients of all, where euthanasia has been proposed - that The Chairman: A few more points before I move to is, neonates who suffer from either terminal conditions, my colleagues. What I propose, if this is alright, we will some not so terminal conditions - so we would associate just come at you from many angles, rather than go along the ourselves with the rest of the hospice movement in opposing table. You spoke about unanimity around the world against the proposals. euthanasia; could you define unanimity?
The Chairman; You are not speaking on their behalf? M r Cusworth: Unanimity, on a vote taken by the World Let us be clear. Health Association: there was only one dissenting opinion from the view that euthanasia was unethical, and the World M r Cusworth: I am not speaking on their behalf, no. Health Association had argued that its members residing, even in states where voluntary euthanasia or physician- The Chairman: Okay, so it is coincidental that your assisted suicide was legal, not to practise it The one and only views and their views, on occasion, overlap. dissenting opinion from this was the Netherlands.
Mr Cusworth: I think we are motivated by the same M r Rimington: Was that association or organisation? interests and concerns. M r Cusworth: Association. The Chairman: We heard earlier, if I can say, that a Mr Rimington: What is the World Health supporter of their controlled patient-assisted suicide is also Association? a supporter of hospice, and there was no contradiction in that - would you see that? M r Cusworth: The World Health Association represents the medical professions from around the world. It is made up M r Cusworth: What I would state is that the hospice of some of the leading practitioners in the UK, it is made up movement worldwide has stated, on overwhelming cases, of members from the Royal College of Physicians. their opposition to the legalisation of either voluntary euthanasia or physician-assisted suicide. Whether individuals Mr Rimington: I mean, what is the basis of who might support the interests of the hospice movement in representation? addition to physician-assisted suicide is something I could not speculate upon. Mr Cusworth: The basis of representation is that the Fellows elected by the Royal College will go through to make The Chairman: But you had said that hospice was up the membership of - certainly the UK’s membership - 1 ‘devastated’, I think was the word you described, in Oregon could not state in terms of who in the Isle of Man would be and Holland. represented on this basis, but I would assume that it would be the Royal College. Mr Cusworth; These were quotes that were propounded by Dame Cecily Saunders, who was the founder of the M r Rimington: So, unanimity does not mean that world’s hospice movement everybody agrees totally on one side: there is a difference of opinion, there is difference of practice? The Chairman: So, presumably, in your preparation you determined what that devastation was and you can share Mr Cusworth: Unanimity, I would state, I would say, that with us? whilst it was pretty overwhelming, that the Netherlands was the one and only dissenting opinion from this argument M r Cusworth: The devastation that I actually talked about was the fact that palliative care had been increasingly The Chairman: So, would that be fair to suggest then rationed, as a result of the legalisation of physician-assisted or conclude that you would think that the practitioners there suicide and voluntary euthanasia, where voluntary euthanasia are either acting dishonourably or they are acting under was seen as a form of palliative treatment as opposed to a pressure, or they are acting in a way which is blinded and last resort - even in cases where, as both Remmelink reports misguided, somehow? did indicate, there were genuine alternatives within palliative care to the patient’s own death. M r Cusworth: Well, what I would say is that, if 59 per
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Mr P Cusworth and Mrs Newton Oral Evidence SELECT COMMITTEE, WEDNESDAY, 5th MAY 2004 29KCE cent of cases are not being reported, and 30 per cent... 59 per the fact that the patient was not suffering from a terminal cent of euthanasia reported in the last Remmelink report is condition and there were alternatives, such as palliative care, actually going unreported, and many doctors are saying that available to him. the reason they are not reporting is because the euthanasia that they are carrying out is specifically going against the Mrs Hannan: So, although the 59 per cent are being, guidelines, then yes, I would you know...?
The Chairman: Right, my last question, if lean, before I Mr Cusworth: The 59 per cent reported by the Remmelink turn to my colleague: you stated you were representing LIFE report: it is important to point out that the Remmelink report and they have a very clear and immovable view. is an anonymous survey, so no prosecutions could be derived as a condition of doctors filling out the Remmelink report M r Cusworth: 1 am here to represent LIFE on the Isle of Man. Mrs Hannan: When was that reported?
The Chairman: If you can just remind me of what their Mr Cusworth: This particular Remmelink report was purpose was, and what is their belief. from the year 1995 and the publication was in 1996, the most recent upcoming Remmelink report will be published M r Cusworth: LIFE on the Isle of Man, as well as in this June. the UK, is an international charity which exists to promote and provide for the respect for all human life, from the Mrs Hannan: Right So there has been nothing in the point of fertilisation until natural death, providing genuine last eight years? alternatives where dishonourable practices or devastating practices that would demean the respect for human life. Mr Cusworth: There has been nothing since 1995-96.
The Chairman: So... Mrs Hannan: What is LIFE’S position on living wills?
M r Cusworth: Would you like me to explain a little Mr Cusworth: Where living wills are concerned, about some of the alternatives that we actually offer? although LIFE exists, primarily, to preserve autonomy for the patient, we do not oppose the criminalisation of suicide, The Chairman: Let me just speak. The only concluding for example, although, what we would state is that, if an point is you have a very... You do not have an open mind able-bodied person did indicate a wish to die, then the to this, you have a very closed partial view, based on the emphasis that would be placed, would be on discovering just why this patient wanted to die, whether there were evidence that you have been kind enough to give us. alternatives available to him, and whether other forms to improve his or her life could be afforded, such as some of M r Cusworth: The evidence that I have submitted has the introductions that we have given with regard to women been exclusively based upon the fact that I consider, through who have been made homeless as a result of pregnancy, many years of study, that there is no system in the world - and such as housing, counselling and other forms of crèche and I would be very surprised if a system could be devised - in education facilities. We believe that while it is a patient’s which voluntary euthanasia or physician-assisted suicide right to speculate on whether treatment - could be effectively regulated. I do not believe that that exists and I do not believe that even the proponents of euthanasia, Mrs Hannan: Yes, I mean, if someone has made a living would state that this has taken place successfully. will, which said, should this, that or other happen... would you respect that? If not at the time, some time before, when Mrs Hannan: Can I ask how deaths in hospices are they are well. reported? Mr Cnsworth: Are you referring to a ‘do not resuscitate Mr Cusworth: In the Netherlands? order’ or a ‘do not treat’ order?
Mrs Hannan: No, anywhere. Mrs Hannan: Yes, a final wish.
M r Cusworth: I would assume through the traditional Mr Cnsworth: Once again - channels, through a coroner i.e. a doctor’s certificate of death. Mrs Hannan: If something really drastic happens to me, I do not wish to be resuscitated, I do not wish to live like Mrs Hannan: But you do not know? that - that sort of statement
M r Cusworth: I cannot speculate on that at the Mr Cnsworth: Once again, it is every patient’s right present. to refuse treatment, if he or she wishes to do so and that is not a right which UFE would seek to demean, but what Mrs Hannan: No. How many prosecutions have there we would be very careful of is, in the case of living wills, been in the Netherlands? we would want to be very careful that the patient was fully aware of what he or she was consenting to and the likely M r Cusworth: As far as I know, only one. This was implications that would take place if he or she did submit the case of Dr Chabot who carried out euthanasia, despite into such a vulnerable state.
House of Keys Select Committee on Voluntary Euthanasia - Evidence of M r P Cusworth and Mrs Newton 30 KCE SELECT COMMITTEE, WEDNESDAY, 5th MAY 2004 Oral Evidence
Mrs Hannan: You mentioned consent. What consent do which were opposed to voluntary euthanasia or physician- people give in hospices? assisted dying, you mentioned disability organisations: where in the world do disabled people go to be euthanased? M r Cos worth: In the Netherlands or in the United Kingdom? M r Cusworth: Where are disabled people euthanased? (Mrs Hannan: Yes.) The Disability Awareness in Action Mrs Hannan: Any hospice. Group in particular researched a study taking place in the Netherlands and, of course, in Oregon where they reported Mr Cusworth: Well, in the United Kingdom, of course, - although I have to confess I do not have a copy of this report if we are referring to consent to treatment, that would have on me, but I can certainly get a copy to the Committee - that to be written and recorded consent and witnessed by an a high proportion of patients suffering from, or with cases examining solicitor. of disability, there was a greater likelihood for euthanasia being given in those cases. M rs Hannan: An examining solicitor? Mrs Hannan: Only a likelihood? M r Cusworth: Sorry, an attending solicitor. M r Cusworth: A correlation. Mrs Hannan: In a hospice? Mrs Hannan: Could you expand on that? M r Cusworth: If in the cases where - M r Cusworth: In cases where a patient was either Mrs Hannan: I am just talking about consent for bedridden, or had cases such as spina bifida, there was a treatment clear, high likelihood that that patient would be euthanased then, than otherwise. Now, this correlation was - M r Cusworth: Oh, I am sorry, I was referring to cases in the Netherlands, but consent to treatment would be written Mrs Hannan: That is not voluntary euthanasia, you and recorded consent are actually saying there is, out there, somewhere there are people who are killing, physicians who are killing off M rs Hannan: That they would receive treatment that persons such as that? would help them die? M r Cusworth: Yes, and I believe that the Remmelink M r Cusworth: Not in the UK. report supports this argument, the fact that 23 per cent, as I say - just under one in four patients - is killed, specifically, M rs Hannan: Yes, but there is a fine line, isn’t there? without consent, would indicate a genuine belief for this. Do you accept there is a fine line between treatment which relieves pain and treatment which can accelerate death. Mrs Hannan: And they are not terminally ill?
M r Cusworth: No, I do not Whilst I - Mr Cusworth: I could not speculate upon that. That part is not recorded by the Remmelink study. Mrs Hannan: Are you a doctor? The Chairman: OK, before I turn to Mr Downie, could M r Cusworth: No I am not, but I have spoken to many I just ask, are you saying that you have reason to believe, or medical professions who, on a number of occasions, have you have proof, other than this eight-year-old report - and indicated the facts to me, that the amount of morphine, I am not doubting the findings of it and the anonymity of potassium chloride or any other such drugs which can and it - but there is almost a blind-eye policy towards a killing have been used to relieve pain, there is such a difference programme in Holland? between the amount necessary to relieve pain and the amount that would be needed to kill a patient, so - M r Cusworth: Other than the Remmelink reports, we have anecdotal evidence from physicians such as Dr Peter Mrs Hannan: How much is that? Do you know? Hildering, who as I said, is president of the Dutch Physicians League, who has indicated his own belief that cases of Mr Cusworth: I could not say. involuntary and non-voluntary euthanasia not only have done and continue to be carried out but also that patients, with or Mrs Hannan: No, so would you accept that it would be without good reason, have felt so frightened as a result of different in individuals? the reports they have heard of this kind of involuntary and non-voluntary euthanasia being carried out, that they have M r Cusworth: I imagine it would be, yes, but from what even fled, to Germany primarily, in order to escape what I have heard - and I can only speculate upon what I have they see as attempts to shorten their lives. heard - 1 would still be of the opinion that with the amount of morphine, for example, needed to kill a patient, as opposed The Chairman: OK, and just finally, can you remind to relieve their pain, there would still be a sizeable difference us of how many prosecutions there have been, given this between the two, even in severe cases. widespread consideration?
Mrs Hannan: You mentioned a number of organisations M r Cusworth: The only prosecution that springs to
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Mr P Cusworth and Mrs Newton Oral Evidence SELECT COMMITTEE, WEDNESDAY, 5th MAY 2004 31KCE my mind at the moment is the case of Doctor Chabot No Mr Anderson: Firstly, Mr Chairman, just for the prosecution could be engaged as a result of the Remmelink record, to state that I am a member of the Isle of Man reports, because as I say, not only is it an anonymous survey, LIFE and building on that, can I just ask Mr Cusworth: it is but part of the conditions for doctors fulfilling this is that often thought that LIFE is solely a Christian organisation. the Remmelink report, or any of the surveys carried out Can you elaborate on that: is it solely a Christian-based by Remmelink, could not be brought in any subsequent organisation? prosecution. M r Cusworth: No, it is not LIFE is actually a non- Mr Downie: Yes, I would like to ask you some questions denominational organisation, we accept members and have about Oregon. You made reference to it in your evidence to members from all faiths and none. us, and the reason I am asking you this is because, obviously, in America, the cost of medicare is expensive, palliative Mr Anderson: Thank you, and as has been referred to medicine is also very expensive in America (Mr Cnsworth: already as the ‘slippery slope’ sort of argument, and once Yes.) and yet you said to us in the State of Oregon, if you you open the door - and there is no such thing as a half wanted to be euthanased this would be provided free of open door - we heard this morning witnesses saying that, charge. I wonder if you could just give us some more basically, if legislation was put in with certain safeguards, information on that? it would be possible to have legalised voluntary euthanasia with safeguards that would stop that sort of ‘slippery slope’ M r Cnsworth: Well, if I can repeat a quote which I did scenario if you like. Have you any views on that? give in my presentation, where the author, Emanuel, who is one of the leading physicians in Oregon, in an article entitled, Mr Cnsworth: Well, tragically, it would appear that ‘The promise of a good death', did comment that: the slippery slope argument is not just present with regard to voluntary euthanasia leading to cases of involuntary and ‘Time, resources and energy are always scarce. Focusing upon non-voluntary euthanasia. We can see that, where one in four euthanasia and physician-assisted suicide means diverting effort from cases of euthanasia that is reported is either non-voluntary or ' the more mundane, but consequential activities necessary to improve end-of-life care for the 90% or more of dying patients who will never involuntary, yet the majority of cases of euthanasia that are even vaguely desire euthanasia*. carried out, according to the Remmelink reports, are going unreported, which would indicate that this statistic could be The point I believe that Professor Emanuel is making even higher than this. there is that, when one accepts euthanasia as a way of So, I would say that there is a very severe risk of a resolving difficult terminal illness, then this has increasingly slippery slope taking place from, supposedly, voluntary led to more and more cases or increased reliance upon euthanasia towards involuntary and non-voluntary forms euthanasia, despite the fact that there are genuine alternatives of euthanasia as well. available. Once again, Dr Peter Hildering also indicated this belief that even where genuine altemátives were available M r Anderson: Just going on, then. In what ways might as reported by the Remmelink report in 17 percent of cases, people who are weak and vulnerable, and suffering from euthanasia was still being used instead of a last resort, but a terminal illness... in which ways do you think they are merely as an option. vulnerable to pressure from requests, for a request to be killed? Mr Downie: Can I ask you, then, if you could perhaps Mr Cusworth: Whilst I would submit, that once again it enlighten us. Oregon is probably seen as one of the most would very much depend on the individual circumstances and religious states in America - obviously there is a big Mormon individual patients themselves, that patients could certainly influence - it is a very strong, I would think, centre for operate either on a conscious or a sub-conscious belief, or moralistic feelings and views: why would you think that even, what they believe to be sub-conscious messages from Oregon, out of all states in America, has decided to bring family members, carers, or other members of society, that in this system? perhaps they should no longer be around. As I say, Mr John Beloff, who was the chairman of the Mr Cusworth: Oregon is not only... It is important to Voluntary Euthanasia Society in Scotland, has indicated point out that Oregon was actually the first state in the world not only does he believe there is a further slippery slope to fully legalise voluntary euthanasia, or physician assisted- emanating from a perceived right to die to a full duty to die, suicide rather, despite the fact that, in the Netherlands, but has actively supported this. physician-assisted suicide had been de-criminalised, Barbara Smoker who is another former chair of the supported by certain guidelines, Oregon was the first state Voluntary Euthanasia Society (VES) has also indicated her to actually legalise physician-assisted suicide. One of the belief that a slippery slope will lead from cases not only of reasons for this I believe, was due to the practice of a man terminal illness, but to non-terminal conditions and also has made quite infamous in recent years by the name of Dr Jack communicated her support for this. Kevorkian who practised in various states, including Oregon, where he took around with him what he referred to as his M r Anderson: So, you would believe that people in Euthanasia machine* and generated a lot of publicity as a certain circumstances would take that decision, not primarily result Dr Kevorkian is now actually in prison in Texas, after for themselves (Mr Cusworth: Yes.) but for carers, family filming a euthanasia without consent. or people they see suffering as a result of their illness?
Mr Downie: Thank you. M r Cusworth: I would suggest that certain patients
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Mr P Cusworth and Mrs Newton 32KCE SELECT COMMITTEE, WEDNESDAY, 5th MAY 2004 Oral Evidence
would feel pressurised to take euthanasia as an option, M r Anderson: What limits should society place on despite the fact that maybe their personal views would not patient autonomy? coincide with that of euthanasia, but would feel, rightly or wrongly, pressurised into accepting euthanasia as a perceived M r Cnsworth: I think society should underline at all solution. times the value of the patient’s own life, the patient’s inherent dignity as a human being, and provide genuine alternatives in Mr Anderson: And what sort of pressure do you think order to improve that patient’s life wherever possible, and 1 that would put on the relationship between the doctor, the think the hospice movement, that Mrs Newton has discussed, medic that is treating, if that legislation was in place? is one such magnificent reaction to this problem.
Mr Cnsworth: Once again, I think it is a very dangerous M r Rimington: First of all, I would disagree with your step that is taken when one gives somebody else the power last statement I do not see any contradiction to people holding over that patient’s life or death, particularly somebody who, different views, and approving of your last statement of course, is in such a high position of trust as the doctor and Can I just say, at the beginning, that I find it difficult particularly concerning end-of-life decisions. questioning you, because in your opening submission, I Dr Peter Hildering, once again, if I can mention one of his found that your submission was loaded with rhetoric, and other propositions, which was that he reported a case where very strong words all the way through, which, when you are a 59-year-old woman who opposed euthanasia for religious trying to present evidence and then go through a question and reasons, was suffering from a cancer of an organ, where answer session, it creates difficulties in appreciation of other she had continued to resist euthanasia, but felt pressurised people’s points of view, when you feel that you are being by her family in order to accept euthanasia, and, in the end, lectured at, and thrown ‘vulnerable’, ‘intense’, ‘dangerous’, did accept euthanasia, as a result of this. ‘cynical’. I just wish to put that on.record. Nonetheless, you place great emphasis on the 1991,1996 Mrs Hannan: So where was that? reports in the Netherlands and from what I can understand of what you said, that is predominantly, but not exclusively M r Cnsworth: This was in the Netherlands. so, the statistical basis of many of your arguments and, as I understand - obviously correct me if I am wrong - that the M r Anderson: When was this? situation in Holland was based on case law. If you said that it was de-criminalised, it was a practice that was allowed, Mr Cusworth: Dr Hildering was speaking two years subject to guidelines. ago, and he was quoting a recent case, so I would suggest First, 1 think my colleagues have reported and questioned just over two years ago. and have not really had a satisfactory report, that if the results of the Remmelink report -.say the 1996 report - were so Mr Anderson: What do you think would prevent a steady shocking as you have outlined - there were all these instances extension of euthanasia in the Isle of Man, if legislation was of actions taking place, although, obviously, anonymous, brought in? within the nature of the report - the authorities would then have taken steps to ensure that prosecution did take place, Mr Cusworth: Tragically, I have not seen a case in Le. that those practices were addressed. the world where I would state that euthanasia has been M r Cusworth: Mr Rimington, I can only report in terms effectively policed, including the Northern Territories of of the results of the surveys, anonymous as they were, that Australia, where the seven cases of euthanasia which were the Netherlands, which, of course, is continuously pointed carried out in the Northern Territories, five of these were towards as an example of euthanasia in practice, that even in recorded as taking place in cases of non-terminal illness, so the ‘Dutch utopia’, as has been referred to by the Voluntary that is one example of a case where voluntary euthanasia has Euthanasia Society, in particular, as an example of so-called been legalised solely for terminal illness, and has already safe euthanasia in practice, that even in this particular state strayed out of the recommendations, in a period of only six where a quarter of cases do go - sorry? (Mr Rimington: months. Have.) It would appear that, from 1991 and 1996, it is We have seen, from the Remmelink reports, once again, around 23 and 27 per cent, and I would speculate - although how many cases of euthanasia go either unreported, and I would underline to the Committee that this is only my even the reported cases, a quarter of these are cases of either own speculation - that a similar statistic will be reported in involuntary or non-voluntary forms of euthanasia, despite the upcoming Remmelink report, due to be published later strict guidelines. this year. We have also seen from Oregon and the Netherlands where euthanasia is given despite the existence of genuine M r Rimington: And, okay, we accept that legislation alternatives available, so what I would state is that I do not was brought in, in the Netherlands, in 2001, which changed believe that there is any state in the world that has effectively the legal basis of what was there before. policed or regulated voluntary euthanasia or physician- assisted suicide. M r Cusworth: Legislation was brought in, in 2001, in order, pretty much, to reflect what was going on in Mr Anderson: Thank you. Now, what limits do you think accordance with the de-criminalisation that had taken place society should place on patient autonomy? over 20 years before.
Mr Cusworth: What premise do I think, sir? M r Rimington: So, okay, we will await the report in
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Mr P Cusworth and Mrs Newton Oral Evidence SELECT COMMITTEE, WEDNESDAY, 5th MAY 2004 33 KCE
June to sec what is there. It was interesting, also, you referred If we look back at the World Health Association, the vote to a survey of doctors which you quickly gave reference that took place where it was only the Netherlands that did to. I think that I also read the report of the same survey of actually support the practice of euthanasia, even where doctors and - euthanasia was legal.
Mr Cusworth: Glad to hear it Mr Rimington: You have not answered my question.
Mr Rlmington: Well, we do try and keep on top of Mr Cusworth: Your question was, ‘How do I explain information, and that survey was organised by yourselves the difference between the two?’ Sadly, what I would state or...? is that when euthanasia is increasingly seen as an alternative to palliative treatment, as opposed to a last resort, where this M r Cusworth: No, that is not true. The report was has taken place, incrementally, for the past 20 years, I would commissioned by a separate lobbying group by the name of state that euthanasia is increasingly seen as merely one option ‘Right to Life’, b u t- among others, as opposed to a last resort.
M r Rlmington: Yes, the lobbying group. Mr Rimington: Right, well, we have had evidence this morning regarding Oregon practice: quite interesting, and M r Cusworth: - what I would highlight, before Hon. which actually contradicted your evidence, 100 per cent, Members of the Committee, that there is, of course, a very in terms of hospice care, palliative care, so it is difficult to great difference between commissioning a report, yet the reconcile the two, but one of the statistics that was given, this questions that were actually written were by a group called morning, was that in Oregon, of the requests - which were, ‘Opinion research in business’ who have an impeccable in fact, not that many - but of the requests for medically- record, as I am sure you will be aware, and carried out though assisted suicide, only one in 10 of those requests was actually doctors.net.uk, which has no interest either way, in either the undertaken. Now, how do you explain that in terms of the legalisation or the opposition. slippery slope?
M r Rimington: And what was the response rate? Mr Cusworth: The way that I would explain that is by quoting Professor Robert George, who, as I said, is President M r Cusworth: The response rate was around 986 of the Association of Palliative Medicine, doctors. Mr Rimington: Why are you quoting somebody to me M r Rimington: Out of? all the time?
M r Cusworth: Just over 1,000. Once again, I have M r Cusworth: Because I believe that somebody has statistics and reports that I can provide you with. said the same principles that I would like to espouse in a far better way than I could. M r Rimington: You asked 1,000 and you got 986 Professor George did explain that in many cases where responses? a perceived wish for euthanasia had been expressed, what the patient was genuinely after, was reassurance with regard M r Cusworth: Since the response was made over a to his or her condition, and that painful symptoms could be website, doctors.net.uk has just over 1,000 members. In managed and that, in the vast majority of cases, this is the other words, the survey was made available to just 1,000 case, which is why only around one tenth, even in Oregon, doctors and out of those just over 1,000 doctors, 986 doctors of cases of euthanasia, or only one tenth of requests for did reply. euthanasia do actually result in the procedure.
Mr Rimington: Thank you. Let us presume that that Mr Rimington: Does not that negate the slippery slope survey is all valid and meets all the good quality criteria argument, and the fact that there are people lining up to put for independence et cetera, then how do you explain the people down, as you seem to imply by the evidence that difference between the views of doctors in the United you have given? Kingdom, and the views of doctors, say, in the Netherlands, where, obviously, you outlined there is widespread activity Mr Cusworth: I did not say that people were lining up and expressed it in the most horrific terms? How can to put people down. I apologise if that is the impression one body of doctors in one, what I would call relatively that you got. modem, open, European democracy act in one way, and a similar modem European democracy, hopefully, the United Mr Rimington: It was very strong and forthright. Kingdom, operate in another way? How do you explain that discrepancy? Mr Cusworth: But what I would state is that it seems very clear that it is around one quarter of cases of euthanasia M r Cusworth: It is important to point out that, once are performed without the patient’s request, and that is not again, it is not the British doctors who are operating in my opinion, that is fact. a way that is any different from the majority of medical opinion, which, of course, is probably one of the most Mr Rimington: That is in the Netherlands, in the binding principles within medical law of which euthanasia Remmelink report, from the early 1990s, sorry: we are would presumably fall within, in addition to criminal law. talking about Oregon in the 21st century. We cannot take the
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Mr P Cusworth and Mrs Newton 34 KCE SELECT COMMITTEE, WEDNESDAY, 5th MAY 2004 Oral Evidence statistics from the early 1990s in one situation and transfer just say, ‘Yes we could provide a 100 per cent, absolutely them to the Oregon in the 21st century., secure legislation with all the controls’ - it is a hypothetical situation, because no law is ever that good, and I accept that, M r Cusworth: Right, well, euthanasia, of course, has would you have a moral objection? been legalised in Oregon since 1996. Whether, in fact, a government-conducted survey has been carried out, as M r Cusworth: Would I, personally, have a moral opposed to milieu survey carried out by practitioners of objection? LIFE has never campaigned against the right of euthanasia themselves, which I believe was carried out a suicide. We have never campaigned against the Suicide Act. couple of years ago by Dr Linda Grisani, who, it is fair to say, We have never spoken against an individual’s wish to kill would have a personal interest in the results of that survey, themselves, if that is what they would decide. but a government-sponsored survey has not actually yet been But to repeat a point 1 made a little earlier, if an able- carried out in Oregon, but if so, I am sure that the results of bodied person or a disabled person did indicate that wish, that would be most interesting. both myself and LIFE would come to the conclusion that something was tragically wrong in that patient’s life. We M r Rimmgton: Okay, apart from the evidence given this would want to investigate the symptoms behind this, and we morning, no doubt the evidence was from a party that had would want to alleviate any potential unnecessary suffering an interest in presenting a case, but it would seem that this but - is the nature of this discussion that is taking place across the board, not just with yourself, that - Mr Rimington: Yes, I accept that, but, obviously, that is your view on life, if you like. M r Cusworth: Of course. Mr Cnsworth: Your question is whether we have any M r Rimington: - everybody who comes into this debate philosophical objections towards - seems to come in with a pre-determined idea, and then finds their statistics and arguments to suit their idea - across the M r Rimington: If one could provide the statutory board - 1 am not criticising you, individually, for that framework which was satisfactory, et cetera - and we would aigue about that all day, whether you can or cannot on that M r Cusworth: Thank you very much, but, of course, issue — but, then, if there is an individual who, in a certain ideas and notions of what is safe or not safe to do should situation, i.e. they are terminally ill, et cetera* wish to have always be based on independent statistical analysis, and I medically-assisted suicide as one of their options, in the hope that I have given that to you today. . closing stages of their lives, would you deny that person that option? M r Rimington: Again, in the evidence this morning about those people who were likely to pursue the option of Mr Cusworth: Sadly, I am afraid that I do not see that as assisted suicide - not necessarily get to that end point of using a legitimate question, because any such hypothetical state is, it, but to go down that route, at least start on that route - were as you point out, hypothetical. There is absolutely no way, people from, in fact, an educated, would more likely be from from the evidence that we have seen and heard and more an educated and a well-resourced background, possibly have besides, that that particular state could ever be realised, either the ability to pay for palliative care in the more expensive in Oregon, the Netherlands or sadly - and I do say, sadly US system et cetera, and were not necessarily the people you - here on the Isle of Man. would lean towards identifying as vulnerable and weak. Mr Rimington: I mean, you are concerned, obviously, M r Cnsworth: These are the cases that have been in any body of medical procedures, around hospitals, across, reported to yourself. Yes. whatever. People die every year who are not meant to die, because the system is imperfect (Mr Cusworth: Absolutely), Mr Rimington: The evidence which we were given this and that is just a reality. morning, seems to negate what you are saying. Mr Cnsworth: That is a reality, but just because this is a M r Cusworth: If I can repeat once again, the only reality, does not necessarily mean that this is a reality which study that I am aware that has been carried out in Oregon we should be accentuating and moving towards. Quite the was carried out by Linda Grisani and other practitioners of opposite. voluntary euthanasia themselves: whether in fact one could detect a hidden interest within that, 1 do not know. Mr Rlmington: I did not say accentuating. There is not a perfect state. M r Rimington: Right Okay - L Ganzini. If we could for a moment just strip out the issue of Mr Cusworth: What we need to be doing is moving safeguards, or what could, or could not, happen if x or y was away from it There is not a perfect state, as I pointed this introduced, or not introduced, or whatever, and forget about out, but I believe that it is not only our duty as citizens, but the possibilities of the slippery slope, and the vulnerable particularly your duty as representatives of the people that pressure on the weak et cetera, and the disabled, and whatever you represent, to at least move towards that perfect state, people wanting to get rid of, or whatever - in terms of providing genuine alternatives for patients and protecting their rights to live. M r Cusworth: Which is the majority. Mr Rimington: Everybody protects their rights to live. M r Rimington: If you could just isolate that out, and It is a very easy statement to make.
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Mr P Cusworth and Mrs Newton Oral Evidence SELECT COMMITTEE, WEDNESDAY, 5th MAY 2004 35 KCE
M r Cusworth: It is an easy statement to make, but it is Mr Cusworth: People can receive medication where pain a very difficult right to guarantee. will be relieved, but in very few cases that I am aware of, that I have been told by the medical doctors that I have spoken to, Mr Rimington: Yes. Okay. I will come back maybe will the use of that kind of treatment shorten their life. later. Mrs Hannan: What about treatment to prolong their The Chairman: I am just conscious of the clock and life? keeping to time. Move to Mr Anderson? Mr Cusworth: Treatment to prolong life? What about Mr Anderson: Mr Chairman, the only comment that I it? would make: Mr Rimington just quoted, at the beginning of that, that he was unhappy with the number of quotes that the Mrs Hannan: Should people intervene to prolong life - witness was making, but it was no more than the number of quotes the witness was making this morning. Mr Cusworth: If the patient is - ?
Mr Rimlngton: No, I did not say that, if I may correct Mrs Hannan: If that is the natural course of events? that, but I was unhappy with the rhetorical nature of some of the evidence. Mr Cusworth: If the patient has requested and consented to it, yes. The Chairman: That will all be recorded in Hansard, so thank you, Mr Rimington. Mrs Hannan. Mrs Hannan: Could I just ask you: you have stated that, for the Netherlands, the hospice movement was virtually Mrs Hannan: It was the statement that you have just non-existent. made about people, in a way, staying alive. What happens... ? Do you accept that people die? Mr Cusworth: That was a statement made by Dame Cecily Saunders - M r Cusworth: Do I accept that people die? Yes. Mrs Hannan: And who was that then? Mrs Hannan: Do you accept that doctors are there to Mr Cnsworth: - who was the founder of the hospice keep people alive, no matter what? movement, two years ago.
Mr Cosworth: I accept that doctors are there to alleviate Mrs Hannan: Two years ago, right. Thank you.. suffering. That is the role of the doctor. The Chairman: Can you just refer to your notes there, Mrs Hannan: In certain instances, do you accept that Mr Cusworth, and remind me: you told us about a UK survey people sometimes die? of doctors and the findings of that briefly.
Mr Cusworth: Of course. People do die sometimes, Mr Cnsworth: You would like me to repeat the findings? in tragic circumstances. It is the doctor’s role to provide Of course. treatment, if the patient wishes and consents to that treatment. However - Mrs Hannan: You do have that with you?
Mrs Hannan: What about the freedom of that individual M r Cusworth: Yes, I actually have a copy of the survey, to consent to that treatment? which I will happily submit to the Committee,
Mr Cnsworth: How about the patient’s right to consent The Chairman: We will do that at the conclusion. to medical treatment being given? Mr Cusworth: Okay. The doctors.neLuk surveys: 61 per Mrs Hannan: In all instances of care, it does not matter cent of the doctors who responded stated that they do not where that care is, in the community or in hospice or in want euthanasia legalised, with 13 per cent undecided. hospital, do all patients consent to all treatments? An even greater majority of doctors - 76 per cent - stated that, even if euthanasia or assisted suicide were to Mr Cusworth: Yes, that is a binding principle of medical be legalised, they would refuse to perform it. law. Once again, it is probably important, I think that it is worthwhile pointing out the fact that no one single doctor Mrs Hannan: So, anybody going into hospice would specialising in palliative care, who responded to the survey, sign a document to say that they knew that they were said that they would be prepared to practise euthanasia or sventualiy going to die. assisted suicide. Furthermore, a 56 per cent majority also stated their Mr Cusworth: No, but the fact that they are going to die, belief that it would be impossible to set out safe boundaries ■s not a principle governing to consent or refuse treatment to euthanasia or assisted suicide, compared with 37 per cent who disagreed. Mrs Hannan: But people can receive medication which loes, in actual fact, kill them. The Chairman: Can I just go back to your point about
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Mr P Cusworth and Mrs Newton 36 KCE SELECT COMMITTEE, WEDNESDAY, 5th MAY 2004 Oral Evidence unanimity around the world, I think you said, and then you and physician-assisted suicide, and to legalise this would be redefined unanimity, from unanimity to overwhelming to thrust a process, force participation, upon the vast majority majority. who have indicated their opposition to do so.
M r Cusworth: The unanimity that I referred to was from The Chairman: Thank you very much on behalf of the organisations representing the medical profession. Committee. I think that you have travelled from England to be with The Chairman: So, when we break it down to us, so thank you very much for taking that time and effort. individuals, and we break it down into a national picture in I think that we will take a very brief comfort break, to get the UK, by my maths, 61 and 13 is 74 per cent 76 per cent your papers sorted, and, perhaps, if you could lodge those voiced similar reservations about euthanasia, full stop. So with the Clerk to Hansard. it would be reasonable - M r Cusworth: That would be good. Mr Cusworth: 76 per cent stated that, whether or not they were in favour of euthanasia, they would refuse to perform it Mr Bryden was called at 3.39 p.m.
The Chairman: So it would probably be fair to say that that 74 per cent plus 2 would be the same group. Procedural M r Cusworth: I would suggest that that could be very likely, but not necessarily. The Chairman: Ladies and gentlemen, we will progress, moving on to the final person to give evidence today, who The Chairman: No, but it would be likely, so that leaves is Mr P Bryden from Sulby. pretty much one in four who would have a contrary view. Mr Bryden, welcome. I think you were here when we did the introductions earlier, so if you are sure, who we all Mr Cusworth: One in four doctors, yes. are?
The Chairman: So, that is not unanimity, is it? M r Bryden: Yes, thank you.
Mr Cusworth: No, but it is not unanimity, but as I say, the The Chairman: And, again, sir if I could ask if we could unanimity that 1 was referring to was from national doctors speak slowly and clearly, for the sake of Hansard. specialising in the hospice movement M r Bryden: First, my apologies for my voice, which The Chairman: Yes, alright. Thank you. is not at its best today; however, I hope you can hear me anyway. M r Cusworth: And as I say, when I am talking about specialist and palliative care in the hospice movement, when The Chairman: Sorry, Mr Bryden, can I just interject we point out the fact that not a single doctor specialising in Mr Rimington has to send his apologies that he will be palliative care, which was the unanimity that I was referring leaving at about ten past four on a prior commitment, and to, did state that they would be prepared to practise either you have also given us a paper that you are going to introduce voluntary euthanasia or assisted suicide, then that would from I think, so can we introduce that to Hansard, as part of seem fairly unanimous to me. your evidence? But, if you still want to read through it
The Chairman: Yes, thanks. M r Bryden: Please. Could we turn to Mrs Newton? Is there anything, in conclusion, that you would like to add or state, before we The Chairman: Okay, thank you. come back to you, Mr Cusworth?
Mrs Newton: No, I have nothing else to say. I endorse all that Mr Cusworth has said. EVIDENCE OF MR P G BRYDEN
The Chairman: Is there anything else you would like to M r Bryden: Well, firstly, I would like to thank the add to what you have said, so far, or touch upon it further? Committee for inviting me here, today, and, really, I think, I sit in the centre of the spectrum on this particular business Mr Cusworth: Once again, if I can just refer back to my of voluntary euthanasia, and connected matters. I really original premise that the proposals either to permit voluntary would be dealing with principles, I think, rather than a lot euthanasia or physician-assisted suicide, I would state, of detail. lead to a danger towards patients both refusing voluntary I have lived on the Isle of Man for approaching 30 years. euthanasia and/or assisted suicide, as well as patients I have a family, actually, on the Island at the moment: four consenting to voluntary euthanasia and physician-assisted children and about half a dozen grandchildren, I have a suicide, and the danger, I would suggest, inherent towards daughter who is a practice nurse, and I have a grandchild the medical profession, of whom it would appear that the who is in her final year as a medical student overwhelming majority would oppose voluntary euthanasia, I work with the Citizens* Advice Service in Ramsey
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Mr P Cusworth and Mrs Newton Procedural House of Keys Select Committee on Voluntary Euthanasia - Evidence of Mr P G Bryden Oral Evidence SELECT COMMITTEE, WEDNESDAY, 5th MAY 2004 37 KCE and have done for a number of years, and I take an interest the UK has their Dr Shipman, despite the fact that there is in these matters, and being one of the grey surfers of this no euthanasia, but we have involuntary euthanasia going on world, I and my colleagues have discussions on various in that respect, hopefully, not very much. subjects. Euthanasia was one of them that we have looked We have involuntary euthanasia taking place in our care at and researched and debated. So, that, really, is the extent homes: we read about it every day. We had a very sad case of my experience. on the Island only recently where, through neglect and lack I worked years ago with the Manx Foundation for the of proper care, somebody has died whilst in care. So, maybe, Physically Disabled and, at the age of 70,1 am beginning to these things are... because we do not have euthanasia law think about the end of things, in a very happy and cheerful does not mean to say that euthanasia, in many ways, is not sort of way, in 20 or 30 years’ time, whatever it may be, but still taking place within our society. I think a lot of people at my age may well begin to think We all jump into our vehicles every morning: literally about,1 well, what happens if 1 do get this or get that?’ I am tens of thousands of people are killed every year on the roads, very fortunate, I am a fit person, but I have, obviously, friends and that is definitely involuntary euthanasia, when you get and colleagues who are not in that happy situation. knocked down by a car, and not in the sense I know that we So, I would like to start, really, with a little bit of are talking about necessarily today, but society accepts the philosophy, which is in that little statement I gave you, and fact that lethal weapons, as they might be, on four wheels read that out to you. are on the road, and cause a huge amount of death and I think compassion for those in need is, in my destruction to family lives and all those around them, and understanding, an important component of all the world’s this is indiscriminate, totally indiscriminate. I wonder how main religions. In fact, 1 heard that said on Radio Four this much those people who are concerned with preserving life morning by a Muslim on ‘Thought for the Day’. I am not a are directing their resources and attention to these sort of practising Christian myself, although I have been an active areas, as much as they are to the rather emotive subject of member of the Methodist Church, and had office in the euthanasia. Methodist Church, and I still have many people who I count I would like to, then, read from the document I actually as my friends, who are active in that church; submitted to you. Would you like me to do paragraph by If you believe in the Christian God, who can intercede paragraph and take questions on each paragraph? I mean, and respond to prayers, I would expect such a God’s love that would, perhaps, be easier, wouldn’t it? and compassion to override any considerations, when dealing with a person facing death. I would not expect selected, The Chairman: I think, whichever is best for you. dogmatic sound bites lifted from the writers of the Old and New Testaments, such as the sanctity of life, to carry any M r Bryden: Right, shall we do it that way, then? I will great weight, in such a situation. Likewise, any secular take it paragraph by paragraph. human being or society which wishes to be considered We already have, as you well know, on this Island, civilised and caring, should, of its own volition, adopt a an excellent hospice, and I would see that, possibly, as loving and compassionate approach to those having difficulty the basis for any extension of voluntary euthanasia. The facing what they believe to be death and no future. hospice organisation at the moment, I gather, does not agree I believe, therefore, that the overriding consideration with euthanasia in any form, voluntary, or obviously not for any framework of guidance or legislation on euthanasia, involuntary, but anything which is going to be acceptable to and connected matters, should be compassion for those who the total population or the majority of the population, which need assistance and support to see them through what they is the framework which may come out of this Commission, believe to be the end of their lives. We should bear in mind legislation or guidelines, it would be better, I feel, if it was that we are not attempting to provide something for everyone acceptable to our hospice care, because, really, this is the to follow, but only the freedom for those in need and those beginning of the line. It is the first step in recognising that who would derive comfort and some escape from their own people who are dying need special facilities and special terrors and anguish, in facing the end of their lives, to use, a care. wholly optional course, tailored to their own specific needs, So, I followed the debate in the papers and elsewhere and, as we have heard this afternoon, the necessity of having with interest all the necessary safeguards in place. As our technical ability to prolong life grows, then so Before turning to the other submission, what is terminal will the problem of termination of life grow with it Society illness? I think it is normally specified, probably, as some will ultimately require democratically-accepted guidelines organic or physical disease. I do not know whether a human for those of us intimately connected with the living-dying being who comes to the decision in his own mind that, ‘I process, and it goes without saying that each of us will be want to leave this life, and I do not wish to remain here any closely connected with this at least once in our lives, and longer’, whether one would consider that to be a terminal, many of us more than that. mental illness, but it is certainly not a terminal illness in the Because this subject is closely related to developing medical sense, I do not think - but others better qualified science, and the desirability of prognostic certainties about than I can deal with that - but a person obviously is not in death, I would expect any legislation to be incremental in this their normal state of mind, when they decide that they wish introduction. What I really am saying, there, is that because to end their lives. There is something seriously impacting on changes are taking place all the time in society, in the way them and their mental condition. Very often it is a terminal, society thinks, in the religious elements within society, the organic illness. So, mental condition, and whether coming unreligious elements and, particularly, in the area of medical to that conclusion is a terminal illness in itself, is something research, and our ability to prolong life and psychological one might want to consider. research, then we are on moving sands. The situation is As for the current situation, well, we have our Dr Skott, changing all the time, and legislation or guidelines would
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Mr P G Bryden 38 KCE SELECT COMMITTEE, WEDNESDAY, 5th MAY 2004 Oral Evidence have to take account of that fact, and the regular revision. M r Bryden: I understand that I think what we have to So, I would ask the Committee to think, and approach the know is: what do they understand voluntary , euthanasia to problem in this way, to think that we are only at the beginning be, what do we and what do you as a Committee understand of the line here, and we have to accept that this problem will voluntary euthanasia to be and how far does it go? have to be addressed from time to time, indefinitely, while we have a civilised society. So, if the Committee feels that M r Downie: We would not be in a position to direct this is not the time to introduce a whole raft of legislation hospice care. on the subject that is being requested by some supporters, I would ask you, then, to look at some of the less contentious M r Bryden: No, no, I accept that, we are in a democratic things that could be done, and by suitable publicity clarify the society and if hospice was to be the basis or the starting point current legal position of these matters in the Isle of Man. for developing this sort of thinking, then I think that would be I think many of us in the public at large are not clear about a desirable thing, that is all I am saying. I am not saying it is what the current rules and guidelines are. One of the areas necessarily possible at this moment in time, but that depends 1 have in mind is a situation on advance statements, which on the sort of arguments that are put to die population in may be advanced directives or living wills. general. I am sure if the whole of the population, with the I gave you a copy of the Alzheimer’s Society, I have a exception of the hospice care committee, agreed with the copy here, and that is really part of my submission. If there is situation then they might have to think again, for example. anything you want to refer to in that, then I would be happy to do so. I think it is an excellent paper, and I attach it to my The Chairman: Just to clarify that Mr Bryden, we reply submission for your consideration. have had an indication from a representative from Hospice I assume that this document - I am virtually certain Care that they would be happy to come and give evidence, - has been prepared with the backing of expert UK legal subject to some advance notice at a later date so, but thank advice. So, a clear statement of the general legal validity of you for that. these types of instructions made by Manx residents would, I think, be helpful to all approaching the end of their days, M r Rimington: What would you think to... actually, it and who have anxieties about such matters. I think it would was quite well explained at the beginning, that we are at the be helpful to people on the Island to know what the position beginning of the process, and that I think a view would be is on living wills. that any legislation that was framed now would inevitably I mean, in the UK, I believe, it is really a matter of need to be modified as we went forward, because we are at common law; there is no legislation. When I say ‘UK’, I am an early stage of learning and history shows that we never excluding Scotland and so it is flexible, in that it is based on get it right first time, doesn’t it? Can I just illustrate two different approaches to case law. New situations can arise, different situations can legislation, that is, for your comment on, and I am not saying arise, there can be legal cases brought, the law may move or either is the right way. it may not move. I do not know whether such common law One is to put the general principles in the primary would be taken as read on the Isle of Man, or whether this sort legislation, and, possibly, the general principles of the of thing that they talk about to the Alzheimer’s Society report safeguards and manner of operation and monitoring the would, in fact, carry the same weight here. I know that we procedures and so forth, but the detail you then put in do refer to judicial precedent from the UK when necessary, secondary legislation, which does not have to go through but I think those are the matters that need clarifying, and we such a great rigmarole for modification, i.e. can be changed need to know where we stand on advance directives. relatively quickly, which is a positive, but also a danger I think it would also be helpful if we were clear about from that side; and the other, obviously, the contrary side to where the DHSS employed medical profession stands, that is to place a lot of the detail in the primary legislation, in relation to the subject of treatment in terminal cases. which is then locked up until that more complicated process The BMA has published guidance on the withholding of unlocking takes place. of treatment, and I attach this to my submission for the information of the Committee, in case you did not already M r Bryden: Yes, there may well be detail which is not have it. These are only guidelines, of course, comment of the substance and principle of the legislation, which could from our own DHSS medical staff confirming the Manx be put into secondaiy legislation, and I feel that any major position and publication of the same, could be helpful and changes, such as, for instance, moving from purely living illuminating to the general public. wills to saying, ‘Yes, we might have a system of voluntary So, those, really for me are starting points. We are euthanasia for certain specified diseases, maybe one, two not talking about euthanasia, yet I am just talking about or three of them’, then anything like that would, obviously, clarifying the current position on things that are going on need at least the whole of Tynwald to approve it. It would in the rest of the British Isles, that may be going on here, have to be, I think, enshrined in primary legislation, not I do not know, and what our position is in relation to them secondary legislation. legally and as a society. I understand the purpose of secondary legislation is to I do not know if anyone wants to question me on that deal with detail that is not affecting the principles behind part of the submission? the legislation, and there may well be scope for that within legislation on euthanasia, and connected matters, but I would Mr Downie: Just to make comment that I think you be very much cautious over handing down to a committee should clearly understand that the hospice organisation, or other body or Department of Government, such as the from the correspondence that we have had, are vehemently Department of Health, I suppose it would be DHSS, to have opposed to voluntary euthanasia, and their route is one of secondary legislation which interfered with the principles palliative care. involved.
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Mr P G Bryden Oral Evidence SELECT COMMITTEE, WEDNESDAY, 5th MAY 2004 39 KCE
Bit of a waffley answer that, but it is how I feel. I which most of us can agree, let us begin by legislating for do understand the principle of primary and secondary these and these alone. legislation, Mr Downie, so that I am speaking from a limited So, keep it simple and keep it controllable in that way, at knowledge of that, anyway. the beginning of things, is what I am merely suggesting, and we need, also, I suppose to be dealing in, as far as possible, Mr Rimington: It all has to come to Tynwald, at the medical certainties, and the ability to make a prognosis about end of the day. Obviously, secondary legislation can be terrninal illnesses is improving all the time, along with the progressed quickly, which, as I said, is an advantage in some rest of medical science, and that is another factor which I situations, but if you are getting knee-jerk reactions, say, you think impinges on euthanasia, and what we do about it can see it is a disadvantage, in that you do not have the same People will say, ‘Ah, but this opens a door!* Well, I checks and balances. believe the door has already been opened with the first painkilling injection. I have talked to nurses, retired nurses Mr Bryden: Quite, I mean, you can close a road in of long experience, who have said that they have known the secondary legislation on the Isle of Man. next injection for painkilling, morphine usually, will be lethal and that the person will die. I know personal, anecdotal cases Mr Rimington: (Laughter) All the time, these days. where people have been called to the bedside by saying, ‘Next time we give him the injection, he may not be here, Mr Bryden: Well, precisely, we do that often enough, but and you had better say what you want to say now’. the principle is: do we accept that sometimes we are prepared I think doctors and nurses are daily confronted with a to close our public roads, and we delegate that to secondary huge and difficult dilemma of a dying patient, suffering legislation, having decided the principle? I mean that, as severe and agonising pain, where they know that another I see it, is the difference between primary and secondary morphine injection, of the strength required to ameliorate the legislation, so we are on the same hymn sheet there. pain, will be lethal. When they - rightly, to my mind - give Should I continue? that lethal injection, have they not crossed the Rubicon into the realms of compassionately-assisted death with just a The Chairman: Please, little final dignity? I think that it is very difficult for a doctor to come along Mr Bryden: Okay. I, like many others, felt deep sympathy and say, ‘Yes, I believe in voluntary euthanasia’. I would be for Diane Pretty and her predicament I once had the privilege a little concerned myself, if I was suffering, possibly with of being associated with a man dying from motor neurone a terminal illness, and I knew that my doctor was a fan of disease. He, in fact, was a local Methodist minister He voluntary euthanasia, and there was no legislation or no was mentally strong, highly intellectual, courageous and a legislative framework to protect him at all, and I think doctors deeply religious Christian. There can be no doubt that his are in a very difficult position at the present time. total conviction that he was on passage to an infinitely better Whilst they are, I am sure, by and large, a compassionate existence was a huge support to him, as death approached, and, obviously, caring sector of our community, they cannot in this most tortuous of terminal illnesses. Being a deeply stand up and say, ‘Yes, I support voluntary euthanasia’, religious believer in an afterlife must generally be of great because of the very situation they are in, and I think it is mental assistance and comfort to those who are about to die. very difficult, I think that would possibly tie their hands. We see bad examples of its effect every day in Palestine and You have to think about when a doctor is giving that final elsewhere in the world.' injection, he does not have to think about legislation at the So, it is all very well, if you have a deep faith and you moment, he only has to think about what he considers to be have the confidence that you are moving to an afterlife. The good practice in relation to that patient. He does not have to suicide bomber has his paradise, and all the other attributes think about what is the law, ‘What is going to happen to me that allegedly go with it, and I suppose they have not only in my profession?', but he does have the BMA guidelines on comfort but may even rejoice in the fact that death is coming withholding treatment, which I suspect are the ones that are to them. used really, in administering that final lethal injection. But we are not all blessed with that situation, and I think That really sums up what I have to say. I say it as a simple most people in Britain, statistics would have us believe, do member of the public. I am a man on the Ramsey bus - you not attend a church and do not believe in the life everlasting, know, not the Clapham omnibus, but the Ramsey bus - and and are thereby deprived of this terminal comfort, through it is a view from the man on the street, and I hope it was of no fault of their own. If being a believer in eternal life is a some help to you. gift from God, then it would seem the majority of people do not receive this gift So, is it not, therefore, incumbent on The Chairman: Thank you, Mr Bryden. I am just us to show human compassion for the Diane Prettys of this conscious of the clock, and Mr Rimington’s commitments. world, and alleviate their terminal agony in any reasonable Can I turn to him, first, if there are any issues? way they would wish? Here is a clearly diagnosable disease with very unpleasant M r Rimington: Well, not in any controversial way. You terminal symptoms, where the sufferer remains mentally mentioned starting off with some clearly defined, known capable almost to the end. Why not have some legislation diseases - 1 think you referred to motor neurone as one. I appropriate only to this particular disease? I can see all the am not a medical person and you are not a medical person, difficulties concerning general legislation in relation to would there be... what other diseases would you, off the top many other terminal illnesses, and this is what I mean by of your head, think might come into that? the need for incremental legislative steps where euthanasia is concerned. If there are a few terminal conditions, about Mr Bryden: I suppose certain cases of dementia, maybe
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Mr P G Bryden 40KCE SELECT COMMITTEE, WEDNESDAY, 5th MAY 2004 Oral Evidence certain types of lung cancer or other cancers which have... M r Anderson: Yes of death, yes. cancer of the oesophagus, 1 think, is a particularly unpleasant disease, and I am not qualified to answer that question, but M r Bryden: Yes, we have legislation in place which I do know, and I am sure we all know, that people suffer purports to do that, and, I am sure, in 99 per cent of cases immense mental agony and physical pain, when they are does, but because you have legislation does not necessarily suffering from these diseases. In some ways, I suppose follow that it will be successful. I cite care homes, as an Alzheimer's disease is not quite like that * example. There is a local lady, I believe, who used to be at Ballamona, who was convinced she was on a cruise and ended M r Anderson: So, us bringing in legislation in this case her days very happily, outwardly, anyway, in that particular then, you would take the same attitude, would you? way, and for other people it can be a total nightmare, I am sure. So, I am not qualified to answer that question. M r Bryden: The only thing I can say, ‘Well, we have But motor neurone I have had some personal experience no need of legislation to control care homes', which is of ,and I have seen a man decline over a period of years and patently wrong, we do have to have legislation for care retain all his mental faculties, and eventually be suffocated homes, otherwise we would still have workhouses and by his own disease, gradually spreading, while he was still similar institutions. So, legislation is necessary, but it is an mentally perfectly capable, and that suggests itself to me as imperfect world, and we cannot expect to get perfect results, one example where one might commence legislation. that is what I am really saying. I am sure there are others, but I am not qualified to give them. M r Anderson: So, if we have legislation, we had better make sure it is enforced, really? M r Rimington: Secondly, you started off with quite a nice little philosophical statement Can I assume from that M r Bryden: No question about that, yes I would not that you do not inherently see a conflict between controlled, disagree with that or carefully controlled assisted suicide, in whatever defined circumstances, as being a contradiction with a belief in M r Anderson: And that is what has probably gone God? wrong in a care home situation. The legislation was not being enforced? M r Bryden: No, I certainly do not, no, because I believe that I do not... I am an agnostic I suppose, which as I am sure Mr Bryden: I dare say, yes. you know, means that I do not know, basically, and I believe that I wish I could believe in the Christian God. I have read M r Anderson: Okay, are you mindful of the views of a lot of the scriptures, I have been actively involved in the disabled groups in relation to this legislation? You said you Church. Sadly for me, the more I have become involved, had worked - the less I believed, I suppose, really, which is an unfortunate state of affairs. M r Bryden: Well, there is no legislation as yet I think Also, probably, due to the ageing process, I suppose that that is the whole point might have something to do with it, having time to think more about these things, but whatever way, whether there Mr Anderson: There is no legalisation at the moment, be a God or be not a God, we are given the ability to make so there is legislation that you cannot do it our own decisions on this world, and we should be able to do that, with or without his help, and when the world can see Mr Bryden: So, I believe that, with any individual, that and will do that it will become a more civilised body, handicapped, disabled or whatever, you have to say, ‘This I feel, so I see no conflict is what we are proposing. We are not proposing a whole raft If he is a compassionate God who wishes to relieve of legislation for a whole raft of diseases, or the elimination suffering and pain, and he is there, then I do not see why of people with certain disabilities or difficulties’. he should quarrel with it. I would be happy to debate the First of all it has to be voluntary, with the accentuation subject with him. on the word ‘voluntary’, and secondly, we have to agree it step by step, so I am only suggesting one disease at the Mr Rimington: Thanks. moment which I happen to know a little about and I would have to go and consult the medical profession, if I were to Mr Anderson: A few things. In your submission you said add to that list that society will ultimately require democratically accepted guidelines for those of us intimately connected with living- Mr Anderson: Obviously, you have had experience dying process. Do you not think society has already got of somebody dying of motor neurone disease. Did that acceptable guidelines? person express the wish that voluntary euthanasia should be legalised? Mr Bryden: You mean in the sense that - Mr Bryden: No, he was one of the fortunate people who Mr Anderson: Legislation. had a consummate faith. He was a Christian to the core, so far as I could tell, and a believer in God to the core. That is Mr Bryden: - the legislation we have at the present a slightly different thing maybe, but, however, he certainly time which protects us in terms of doctors’ certificates for believed in the life hereafter, and that really carried him example and certificates of death? through, I think, his final days.
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Mr P G Bryden Oral Evidence SELECT COMMITTEE, WEDNESDAY, 5th MAY 2004 41KCE
Mr Anderson: You touched on one or two other illnesses very much, in that particular subject - which is a different one that you thought might be applicable in an incremental way, - in favour of the rights of the mother. I understand the point in the future, and one of those was dementia. Would you you are making, which is that the legislation has been abused. not agree that any legislation should only be given as an Well, it is for our legislators, it is for the UK Government to opportunity to people who were mentally competent? decide, in relation to the electorate, democratically, whether that legislation needs modifying or not, and if it does, they • M r Bryden: Yes, I believe in the case of dementia, then should do it if I... in the very early stages, these days, you can diagnose dementia, when you are still perfectly rational, that is a clear Mr Anderson: Could I just touch maybe on the vulnerable case where an advanced directive is very important and and pressures to vulnerable people? If legislation was in helpful, I believe, to those who are going to be caring for place, do you not think that would put pressure on vulnerable me, when I have the full-blown disease. So, it may not be a people who had relatives, that they were distressed because situation where voluntary euthanasia is appropriate, but it is, the relatives were distressed seeing them in the state they I feel, certainly a case where an advanced directive which is were, and as there was legislation possibly in place, they in taken notice of is important some way may feel obliged, in certain circumstances to go down this route? M r Anderson: Do' you think that people's medical conditions can change, and that occasionally, doctors do Mr Bryden: People do this already. There is many a get diagnosis wrong? person who has, sadly, gone out with a bottle of pills or a bottle of whisky or both or whatever and committed suicide Mr Bryden: Yes. because he feels he or she has become a burden to the family around them. Mr Anderson: Therefore, somebody might make These are very serious, personal thoughts, and I think a decision on a living will, for example, as a result of a that, whether I would be sitting down, reading the Act in diagnosis and then, further down the road that diagnosis is relation to euthanasia, and thinking about that at the time, I proved wrong, what are your thoughts on that? do not think I would - 1 would be thinking about the actual details of iny life, and what I am doing to the people that I M r Bryden: Well, there is a safeguard in place for am depending on. At least, I hope, that is what I would be that, because I think a living will, to be accepted, has to doing. be regularly updated. The current BMA guidelines suggest So, I understand the point you are making, but I every five years: that seems to be, in today’s climate of personally do not think it is important in that area, because medical advance, quite a long period of time. I have heard a I think people, make those decisions already, anyway. period of two years suggested as being sensible, and I think in my own case, if I was going to make a living will - I confess Mr Anderson: Do you not think, though, that there is I have not - 1 would probably be thinking of updating it at an argument there for developing palliative care to a wider least every two years. That might accelerate, depending on cross-section of the community, to make sure people know what my condition was. it is available, and how it can help them mentally, as well as physically, that more resources should be channelled' M r Anderson: The proponents of voluntary euthanasia into that area, rather than a legislative area for voluntary are suggesting to Members of Tynwald that any legislation euthanasia? that should come forward should be very tightly controlled, and we would know, when we put the legislation in place, Mr Bryden: Well, I think that in a way you are in that it was watertight and that it could not be expanded, if agreement with me, because I am saying that, while you like, in any way Do you not think that this statement development of the hospice care facility, further down the you are making, about it being incremental, would put people line as it were, would be a commendable way of proceeding off even introducing it in any such way? with this, if it was possible, and would be a way which I think would be acceptable to the Manx electorate, generally, Mr Bryden: Well, if it does, so be it I am concerned because we have a very good hospice care function. That about the risk here, of the very risk that you state, where is the area to develop if we can, and I hope the people in there are uncertainties in prognosis in a disease then, clearly, charge of hospice care are not people who are fixed thinkers, that for me, might not be a suitable subject for voluntary that they will see changing situations and change with them euthanasia. - such as medical science and society - All the other things yes, but it is an imperfect world, we need to be dealing in certainties, and that is asking, probably, Mr Anderson: I think Hospice Care have a different the impossible where a prognosis is concerned, but in some view on that, in that they see, in the alleviating of pain for cases more than others, and I only select one possible the patient, they would not - 1 am just putting my opinion example. So, it is an imperfect world and any legislation is forward - think this is a process you go down, iand you get liable to require correction. so far and then you make a decision. That goes against the principles of what I understand to be hospice. Can I - Mr Anderson: Are you aware of the introduction of v the Abortion Act in the UK and how that was termed at the Mr Bryden: Are you talking about - may I ask you one beginning 'only for extreme circumstances' and yet now it more question to clarify that - mental pain or physical pain is quite extensively used in very many different stages? or both?
Mr Bryden: Yes, I feel that is a different subject I am Mr Anderson: Primarily, it is for the physical condition
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Mr P G Bryden 42 KCE SELECT COMMITTEE, WEDNESDAY, 5th MAY 2004 Oral Evidence
of the person that hospice, as I understand, deals with. When the BMA have concerns about these issues, so it is thought we talk about mental anguish, it gets rather confusing, and I that a way of, perhaps, moving the argument forward, as think it is another area and it is very difficult. it were, to find another route, another type of hospice that I asked somebody this morning and, maybe, I could ask could be licensed and regulated, but, of course, accessed you, how do you draw the line between somebody who is by doctors. depressed and going through a phase where they might be giving consent to take a voluntary euthanasia step that might M r Bryden: It seems to me that, when you have the dying only be a period of their life, if you like, a short period of their and those who are trying to live, side by side in a facility, life, and two weeks down the road their whole complexion that is probably not a good mix. The hospice has been a great on life changes? success, in that it is clear that when you go to hospice you know what the situation is. It is very unlikely that you are M r Bryden: 1 think you are saying exactly what I going to come out, and that I think is a good thing, because said: that is a difficult matter on which to give an accurate you have to face up to certain facts, and you have care there prognosis, for a psychiatrist or a GP or any other doctor, which is related to that, and the same principles have to apply, because that is a situation known to exist So, if we cannot I would have thought, in relation to euthanasia, which is why give an accurate and satisfactory prognosis of how that is I see the two things as very closely connected going to develop, then there is a risk factor there, obviously, So, the answer, to you, is really whether it is under and it is not a suitable subject for voluntary euthanasia, in Government or under private care. If it is privately owned, as my opinion. the hospice here is, I am sure it is regulated in certain ways and hospices concemed with voluntary euthanasia would Mr Anderson: So, would you say it is very difficult to also have to be regulated very carefully, of course. draw a line between where you say it is acceptable, somebody to have voluntary euthanasia, and somebody who cannot Mr Downie: Just one other point: you mention that you have it? felt, if there were no provisions made, people would be more inclined to go off and do their own thing, as it were, and M r Bryden: Extremely difficult, I agree. But not a reason commit suicide, go and take tablets and things. I think it is for not having legislation where we have certainties, some - worth mentioning that the statistics show, really, that does not reasonable certainties. tend to happen. The number of suicides that we have, both in the UK and the Isle of Man, generally indicate they are M r Downie: Just picking up on some of the points that much younger people, who, generally, do not have a physical you made then, Mr Bryden, I get the feeling that you would illness, but pressure of life and all sorts of other things and accept that people have the right to die with some dignity? financial problems, but by and large the number of people at the top end or the older end who have been diagnosed with Mr Bryden: Yes. illnesses or the long term health is not very good, they do tend to stay the course, as it were. Mr Downie: And maybe that caused the spectrum. I mean, we mentioned people with terminal illness, but you M r Bryden: Sure, well, I mean, that is a question of could also envisage a lot of people - 1 will not say a lot of fact isn’t it? I think we are almost certainly only going people - but there will be a number of people in their early to be legislating for a very small body of people, if we to mid-80s, crippled with arthritis, immobile, starting to have do legislate, anyway. So, that I think is the answer to that incontinence problems, obviously their long-term prognosis particular point is not very good at all. What do you do with them? They If there was a big demand for voluntary euthanasia within could be three or four years in a home deteriorating, I can the population as a whole, then a lot of people, as you rightly see that side of it. Interesting. say, would be going out committing suicide. I think that is I just want to ask you whether you think that the the point you are making isn’t it? Because it is relatively provisions for bringing about euthanasia should actually be easy to do that these days. So, I think the number of people left with Government, with the Health Services, or it should who will be wanting voluntary euthanasia, because of the be somebody outwith the Health Services, similar to hospice good palliative care, the good medical care that is available, that should be providing this type of treatment or service? would be relatively few. But, nevertheless, they have their right to die with dignity. Mr Bryden: How do you mean, the legislation or the actual - ? Mr Downie: I think the difficulty is putting the legislation together that covers all these angles and satisfying the BMA M r Downie: No, the legislation will be completely and the medical profession and everywhere else, in a small separate. jurisdiction like the Isle of Man.
M r Bryden: Oh, I see, yes I understand what you are Mr Bryden: Sure, so I say let us start with living wills, saying. and let us start with clarifying the position for people, so that people know what doctors can and cannot do under Mr Downie: But if this is to proceed there is a conflict the BMA guidelines, and we have a little bit of publicity, with the principles enshrined with the delivery of the general perhaps, about this. Legislation could perhaps follow that medical facilities. If you were in earlier on, we heard from I do not know. the Island’s principal nursing officer, and in the UK, currently there is strong objection from the main nursing unions and Mr Downie: Thank you, Mr Bryden.
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Mr P G Bryden Oral Evidence SELECT COMMITTEE, WEDNESDAY, 5th MAY 2004 43 KCE
The Chairman: Mrs Hannan. M r Bryden: I see a difficulty there, I agree. I do not know. I understand the point you are making. I am not Mrs Hannan: No, I have no questions for you. I would qualified to say how big a difficulty that is. I can see that if just like to thank you for your evidence. one had to choose between having care professionals on the Island and having voluntary euthanasia, if it is a clear cut Mr Bryden: Thank you. thing like that, there is only one obvious answer. But you are asking for an opinion on something which would be very The Chairman: Could I just conclude - oh, David? difficult to judge, I feel. We should not be providing the service to people who Mr Anderson: Just following on from that then, do you are resident outside the Isle of Man. We are pretty good at not agree that hospice allows people to die with dignity, as making residential wills over here for ourselves, and I see well? no reason why we cannot do it for this, as well as anything else. M r Bryden: I would, yes. People go into hospice with a huge variety of end-of-life problems and end-of-life causes, The Chairman: Okay, well, for me to just to say thank and I am sure that many of them die with dignity, because you very much for not only offering your submission, but the palliative care is appropriate to their condition. giving up your time to come in, Mr Bryden. It is much We are talking about the few here, possibly, who are in appreciated. Is there any final observation or concluding mental anguish and mental suffering, who require a different comment you want to make to us? approach. M r Bryden: No. All I hope - well, perhaps, there is yes: Mr Anderson: Sorry, as I understand it, people who are I cannot say no, and then say something can I? (Laughter) in mental anguish, would, from what I understand, from what It is a bit - is proposed, they would not fall within these criteria - they would have to be mentally competent. The Chairman: We do that all the time! (Laughter)
Mr Bryden: That does not mean to say they are not, Mr Bryden: I do hope that, at the end, the Commission because they wish to die and end their lives. Because their will actually be successful in producing something, in terms quality of life is such that they no longer wish to continue it, of enlightening those members of the population who are means that you have to be in a state of mental anguish in my interested in this subject, which is generally the elderly, in book, to be in that state of mind, but it does not mean to say what their options are, and if nothing else comes out of it that you cannot think rationally and decide that ‘Well, this I believe that will be beneficial. Maybe we already have is the end, I do not want any more, I have had enough’, and these options, but we do not know it, but that, in itself, needs that is really the category of person that I am talking about clarifying, I think. - not somebody who is mentally deranged, for example. That is all. Thank you.
Mr Anderson: Okay, can I maybe just touch on The Chairman: Thank you very much again. something else then. What do you think the impact would Thank you very much ladies and gentlemen. That be, with legislation coming into place in the Isle of Man, concludes it for today. when other jurisdictions round about have not got the same legislation and we are trying to attract health professionals from outside the Island, who have trained elsewhere? The Committee sat in private.
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Mr M Kermode
HOUSE OF KEYS OFFICIAL REPORT
RECORTYS OIKOIL Y CHIARE AS FEED PROCEEDINGS DAALTYN (HANSARD)
SELECT COMMITTEE ON VOLUNTARY EUTHANASIA
BING ER-LHEH MYCHIONE C O YRT - G Y-B AAS E MYGHINAGH LESH COARDAILYS
Douglas, Friday, 21st May 2004
Published by the Office of the Clerk of Tynwald, Legislative Buildings, Bucks Road, Douglas, Isle of Man. © Court of Tynwald, 2004 Printed by The Copy Shop Limited, 48 Bucks Road, Douglas, Isle of Man Price Band E 46KCE SELECT COMMITTEE, FRIDAY, 21st MAY 2004
Members Present:
Mr Q B Gill MHK (Chairman) Mr D M Anderson MHK Hon. A F Downie MHK (from 10.15 a.m.) Mrs H Hannan MHK Hon. J Rimington MHK
Clerks: Mr M Comwell-Kelly, Secretary of the House of Keys (Morning only) Mrs M Cullen, Deputy Clerk of Tynwald (Afternoon only)
Business transacted
Page Procedural...... 47
Evidence of Prof. J Harris, Institute of Medicine Law and Bioethics, Manchester University...... 47
Procedural...... 55
Evidence of the Ven. Brian Partington OBE, Archdeacon, on behalf of the Churches...... 55
The Committee adjourned at 12.13 pm . and resumed at 12.20 pm .
Procedural...... ;...... 60
Evidence of Ms D Annetts, Voluntary Euthanasia Society - Evidence commenced...... 60
The Committee adjourned at 125 p.m. and resumed its sitting at 2.30 p.m.
Evidence of Ms D Annetts, Voluntary Euthanasia Society - Evidence concluded...... 70
Procedural...... 71
Evidence of Dr B Harris, Isle of Man Medical Society...... 71
Procedural...... 81
Evidence of Mr M Kermode, Mec Vannin...... 81
The Committee sat in private. Oral Evidence SELECT COMMITTEE, FRIDAY, 21st MAY 2004 47KCE
manner that they would wish, and so on. And those dangers House of Keys Select Committee are real and I do not underestimate them, but against those dangers have to be set another group of dangers, and those on Voluntary Euthanasia are the dangers of people dying unpleasant deaths that they would not wish to die. We are familiar with the case of Diane Pretty, for The Committee sat in public at 10.00 ajn. example, who campaigned very strongly to avoid a death in the Millennium Conference Room, by suffocation, which she found particularly terrible as a Legislative Buildings, Douglas prospect, and who failed. You will probably be familiar with the case of Geoffrey Wamock, Baroness Wamock’s husband, who died in December, and I do not know whether you have [MR GILL in the Chair] seen it, but Mary Wamock wrote a very moving piece in The Times, saying that she had made an error in supporting legislation against euthanasia in the past and that with the experience of her husband facing also death by choking, and Procedural being very fearful of that particular death, she recognised that she had, as it were, got it wrong, in objecting to voluntary The Chairman (Mr Gill): Moghrey mie, ladies and euthanasia and had changed her mind, and I think... So, gentlemen. Thank you for your interest and attendance. against whatever dangers there are of slippery slopes and Before we begin, I think, Prof. Harris, you probably will people being insincere in their wishes to die have to be set not know us, but you can see from our titles. We are a Select the dangers of condemning people to very unpleasant deaths Committee dealing with matters around voluntary euthanasia that they would not wish to experience. and that issue. My colleague on this side: Mr Rimington. Mr Perhaps the last thing... I am very happy to answer Downie, my colleague, unfortunately has been called away questions, and I think you may have received a paper on on Government business but will be joining us very shortly, end-of-life issues that I have written. Those who have... I do we hope. I am Quintin Gill. This is Mr Anderson and Mrs not believe that there is anyone who has a sincere, principled Hannan. We are all Members of the House of Keys, and this objection to euthanasia, and I will offer you one case which is Mr Malachy Comwell-Kelly, who is the Secretary to the I think illustrates this point. House and is the Clerk of this Committee. It is a case that was reported by a very famous Oxford If I could, Prof. Harris, remind you that we are being professor of jurisprudence, Herbert Hart, in one of his books, recorded for Hansard purposes, so perhaps, if we do not and it apparendy is a real case that occurred in the United speak clearly, you can tell us, but if we could try and just be States. This was a case where there had been a road accident mindful that we are being recorded. (Interjection by Prof and a lorry driver was trapped in the cab of his lorry, which Harris) Thank you. was burning. There was an American policeman on the scene, who, like all American policemen, was armed, and it was quite clear that the driver could not be extracted from the cab before he would be burnt alive. The driver pleaded EVIDENCE OF PROF. J HARRIS with the policeman to shoot him in the head, give him a swift death rather than let him be burnt alive. Those who have a The Chairman: We are very conscious of the tight principled objection to voluntary euthanasia would have to schedule you are on, and very much appreciative of the fact think that it is morally better, morally acceptable, to permit that you have made the effort to come and give evidence the driver in those circumstances to be burnt alive rather than today, so perhaps without any further ado we will hand over being offered the swift death that he requested. to yourself. I know of nobody who, when this case is put to them, Perhaps if you want to give an introduction, and then we would hold out for a preference for the driver being burnt will go into a bit of a ‘question and answer’. alive. There may be people in this room who would take a different view, but if I am right about that, I think that that Prof. Harris: I have not prepared an introduction, but I as it were, concedes the principle that it is both ethically am very happy to say something very brief. It seems to me acceptable and, indeed, humane, decent and reasonable, that... Let me offer you a proposition, which is that there is to end people’s lives at their request, at least in some only one thing wrong with dying, and that is doing it when circumstances. you do not want to, or doing it in a manner that you do not The only remaining question then is: in what circumstances like. All the other problems are not really problems about and with what safeguards? Thank you. dying. Problems like pain, for example: pain is clearly something that nobody likes, but that is a problem about The Chairman: I turn to my colleague, Mrs Hannan. pain, not about dying. If that is broadly right, then it follows that dying when you do want to, or in the manner that you M rs Hannan: Yes, could I ask about... The paper want to, is okay, and I think most people, actually, would that you have written is about consent and the end-of-life . intuitively feel that that is right decisions. Could I ask about consent? It is a difficult one. I think all of the remaining issues, really, are issues about It tends to be that if someone consents to ending their life, practical matters, are issues about whether slippery slopes that is wrong, but if somebody has not consented, it is okay are a danger and, if so, what sort of danger they are, whether to treat someone until they die, and I wondered what the :here are dangers that people might be coerced, might not situation is with consent. You cover some of it in your paper, ^e really dying when they would wish to do so, or in the but it is the actual... It seems acceptable if somebody does
Procedural House of Keys Select Committee on Voluntary Euthanasia - Evidence of Prof. J Harris 48 KCE SELECT COMMITTEE, FRIDAY, 21st MAY 2004 Oral Evidence not consent, to them being helped out of life by pain relief people immediately before them, somebody in a permanent and something that might kill them, but not acceptable if vegetative state and their relatives, but also the other people they actually consent to it and it happens before. who may be affected by the decision to keep that individual alive, including those who might occupy that bed and have, Prof. Harris: You are saying that this is a common in turn, their life saved by the resources that are currently belief that there is this distinction? The role of consent, as being deployed - 1 was going to say ‘for the benefit’, but you will know, probably, better than I, has a peculiar role that, of course, is dubious - for the attention of an individual in common-law tradition jurisdictions. Consent is there to who cannot further be benefited by health interventions one prevent medical touchings counting as assaults and to support way or another. the autonomy of the individual, so that where people consent I am not sure if that quite answers your question, Mrs to what happens to them, that rebuts any suggestion or Hannan, but I did my best. presumption that they might have been assaulted So, in the model that I offered you - this rather simplistic suggestion Mrs Hannan: Thank you. that I put at the start that there is only one thing wrong with dying, and that is doing it when you do not want to - if you (Mr Downie takes his seat) know that people want to and you know that they consent, it seems to me, assuming the consent is genuine and informed The Chairman: David. and so forth, that that deals with most of the ethical worries that we ought to have. M r Anderson: Yes, thank you. Then the question is: what of those cases, for example Would you agree that it is very difficult to take an like Tony Bland, who is in a permanent vegetative state, in academic view in this area, without actually being influenced the United Kingdom? Eventually, the House of Lords decided by your own personal views and experiences? And regardless that it was ethical, legal and appropriate that his life should of your academic interpretation of the situation, do you think be ended Who could not consent? that you cannot separate that from the other influences that Where people cannot consent, it seems to me that there have impacted on your thoughts? are two successive stages that must be covered. The first is: where you cannot get the consent of the individual, you Prof, Harris: I think it is true that all of us bring to have to move to what is generally called the ‘best interest’ bear, on any issue that we take seriously, both our powers test You have to try to decide what it would be in their best of assessing evidence and assessing the quality of the interest to have happen to them, and for people whose life arguments on both sides of the case, and also, of course, could continue in a reasonable way, it will usually be in their we take into account our personal experiences and, indeed, best interest for that life to continue. the experiences, as we understand them, of those that we Where a biographical life has, effectively, ended, as was - know, but it seems to me that it is our responsibility to sift the case in the Tony Bland decision, where, as I think the all of those, and try to decide, on the best judgement that various Members of the House of Lords said - 1 think I can we can make, about the weight of evidence and argument quote one of them almost verbatim from memory - Tony and personal experience, and what the right course of action Bland had ceased to have any interest in living and whether or should be. not he lived was a matter of total indifference to him, in those I think it is, certainly, our responsibility not simply to be circumstances it seems to me that there are no best interests driven by our feelings, however strong they are. We have to consult that there is no life there of any meaningful sort. to assess the appropriateness of those feelings. I do not The individual whose life it is cannot be either wronged or suppose I am the only person in this room who is conscious harmed by the ending of that life, and, therefore, it is open, that sometimes they have very inappropriate feelings about it seems to me, to society and to the courts to say, ‘What situations. I have many prejudices, and many of those other considerations, then, are important?’, and if nothing prejudices I am ashamed of, but they are sometimes very turns on it and people are very concerned that the life should strong. It is the responsibility, I think, of all human beings be sustained, then by all means sustain it, but, usually, to try to decide which of the feelings that drive them are something important does turn on it. In the Bland case, his prejudices, which are irrational, which are inappropriate, parents wanted to be allowed to grieve. They had petitioned and to make judgements in the light of those. the courts. While Tony was alive, they went every day to his So, in short, I am not sure that I accept the implicit bedside and sat with him, and they had done that for a number distinction in your question between an academic view of years. They wanted to be allowed to grieve. They wanted of a subject and, so to speak, an authentically felt view. I to have closure. They wanted him to rest in peace. think it is each individual’s responsibility to sift all of those There are also, of course, very often important other elements in their decision-making, and try to come to the sorts of considerations to keep somebody like Tony Bland right conclusion. not in intensive care, but on a high... I have forgotten the name given to these beds, but a bed that requires a great deal Mr Anderson: So, would you therefore be happy with of attention is very expensive for society, and the money your own situation, that you can clearly put aside those deployed to do that will be diverted from other important prejudices, if you like, that you have in your own mind, uses for healthcare resources. As you will know, in the Bland compared with the academic area that we have asked you case, the House of Lords decided that they would not address to explain today, in that, with any experiences or thoughts the financial questions. They would assume that there was or waverings you have one way or the other, you can quite no effective financial interest, but I think, in a responsible categorically state that you are independent in this area? society those interests must arise, because it is the duty of law-makers not only to consider the possible interests of the Prof. Harris: I am independent, just in the sense that
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Prof. J Harris Oral Evidence SELECT COMMITTEE, FRIDAY, 21st MAY 2004 49KCE
I have no financial or other pressures on me, dictating an Prof. Harris: Of course, it is our responsibility to answer to this question in one direction or another. I am protect the vulnerable, but it is also our responsibility to a member of no organisation that supports euthanasia or, champion the rights and the liberties of the vulnerable. Being indeed, opposes it vulnerable does not mean that you have no rights, no liberty, I have tried, as a philosopher and as a citizen, to think no autonomy to exercise, so we would need to talk in more as clearly as I can about the issue of euthanasia, and of detail about in what senses particular classes of individuals course, one of the things that runs through my mind when are vulnerable, in what their vulnerability consists, and how 1 think about a question like that is what I would want for best that vulnerability may be protected. myself. Would I want the freedom to choose death in certain But it is not clear to me that we protect the vulnerable by circumstances, and why would I want that? denying them, even in their vulnerability, the opportunity to I have answered that question in the affirmative: I would exercise autonomy over the way their life goes - quite the want that freedom. I would regard it, as another philosopher reverse, I would suggest And, as I indicated earlier, it is also has said, as a cruel tyranny exercised over me for somebody not clear to me that the class of vulnerable people excludes else to deny me a death that I sought when I had come to a those vulnerable people who are institutionalised, who are mature and considered judgement that that was the course unable to take their own lives, would require assistance that I wanted my life to take, and the manner in which I in order to do so. They seem to be a very large class of wished my life to end. vulnerable people, and to a great extent their vulnerability consists in their helplessness in the face of others denying Mr Anderson: Just going on from that, then, what limits them an end to the life that they would wish to end. do you think society should place on personal autonomy? Mr Anderson: Just going on, we here, this Committee, Prof. H arris: There is a book-length answer, and, are looking into possible implications of voluntary euthanasia fortunately for you, I have a plane to catch, but the short legislation. You seem to be broadening it out into euthanasia answer is also the traditional one, one given by John Stuart per se, if you like. What I am trying to say is: we are looking Mill. into the implications of purely voluntary euthanasia, but you It needs to be hedged about, with many qualifications seem to be favouring euthanasia, full stop, or making a case and caveats, but broadly, my autonomy ends where your for euthanasia. autonomy begins. So, if the exercise of my autonomy limits your autonomy in some way, that immediately creates a Prof. Harris: These are discrete questions, and it is question of balance. important to keep them discrete. I broadened the issue in It does not always entirely end where your autonomy response to Mrs Hannan’s question. begins, and we have to analyse what your autonomy means. I would certainly be in favour, for the reason I gave, right Is it just where my exercise of a particular course of action at the beginning, of voluntary euthanasia. It seems to me is something that you do not wish to see happen? Does that that this is properly the individual’s own decision. We know, violate your autonomy - that is a complicated question even in societies like my own, if I can make that distinction - or is it only when I actually circumscribe your physical between the Isle of Man and the UK, the rest of the UK... movements in some way? As you know, in the United Kingdom, euthanasia of any But within those sorts of difficulties, which can be teased description is apparently not permitted, and yet the courts out, I would defend autonomy so long as, broadly speaking, were able to order the death of Tony Bland. Effectively, the it does not violate the autonomy of others, and in the case of courts were able to order the separation of the Manchester decisions about one’s own death I think one has to ask, ‘Who conjoined twins, knowing that that would involve the is the person primarily concerned?’ - clearly the subject deliberate killing of one of the twins in order to save the themselves - ‘Are others affected by someone’s death?’ Of life of the other. course, they are. Every man’s death diminishes me in some So, there are issues which all societies face, whatever sense, but I think the crucial question is whether the greater stance they take on so-called ‘voluntary’ euthanasia, which evil is to deny the individual subject the autonomous control involve end-of-life decisions and, indeed, which involve of their own destiny, and allow others to decide when they decisions taken by third parties, usually the courts or at die and the manner of their death or not, and I think that is least of the instance of the courts, where people who cannot the greater violation. consent to death have their lives ended in various sorts of The greater violation would be to deny the individual circumstances. control of that, and accord that control to others, however I think it is proper for those sorts of decisions to be taken caring those others are of the individual concerned. Of on an individual basis by the courts, but that is the case course, if I were to end my life, I hope there are at least one whether or not a particular society approves of voluntary or two other people in the universe that might be distressed euthanasia! That is the case in which most societies work, by this, but the question is whether their feelings about how so nothing I have said is designed to recommend a policy I should die are to be given primacy over my feelings about shift in that direction. how I should die. I would recommend a policy shift to permit voluntary euthanasia with certain safeguards, which could be discussed, M r Anderson; If there is a choice, do you think that the but I am not recommending, as it were, a general policy of law should aim to protect the large number of vulnerable accepting other forms of euthanasia. I know that nonetheless, people, or remove the protection, for the sake of the few all societies do take those decisions, and rightly so, but I who fear suffering? And legislation would not help them to think it is highly appropriate that those are always taken by relieve that suffering. the courts, and always on a case-by-case basis.
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Prof. J Harris 50KCE SELECT COMMITTEE, FRIDAY, 21st MAY 2004 Oral Evidence
The Chairman: Prof- Harris, if I could just introduce * Would the policeman still be justified in sparing the driver terrible Mr Downie, who arrived at 10.15. suffering by killing him? I believe so and hope you do too, because the alternative is to take responsibility for the death by torture of the driver.’ M r Downie: Good morning. You would not be surprised, perhaps, if people would The Chairman: Before we move on to my colleagues, read... Actually it is quite a sinister, potentially sinister, could I perhaps pick up on a point that you made? I am 'slippery slope’, as you described it earlier the policeman paraphrasing here, so you can correct me if 1 am wrong, but decides to shoot based on his or her values rather than you said words to the effect that ‘I do not believe there is the persistent and competent requests of the driver in this anyone who has a principled objection against euthanasia.' instance. Would that be a fair...? Prof. Harris: I hope it is not seen as sinister. I was trying, Prof. Harris: Who has had put to them the case that I put honestly, to present a more difficult case for my own position, to you of the policeman’s dilemma? 1 find it inconceivable and to think my way through what would be appropriate indeed that anybody would say it was wrongful, that that in such a case, and having thought through what would be policeman’s actions were wrongful. (The Chairman: appropriate, I gave what my conclusion was and invited Yes.) Indeed, it would be a very strange, cruel and unusual others to say whether or not they shared that conclusion. person who might say such a thing. In other words, I think Of course, there are difficult cases, and one could that people, when they say they are opposed to killing in all construct more difficult cases than that and there are more circumstances, have not thought it through, and have not difficult cases than that in real life, and we all... Hopefully, confronted themselves with a case like that, or with others most of us manage to escape having to face dilemmas like that exist in the real world, or might be constructed that, but when we do face them, it does not seem to me that we are aided in the resolution of those, by appealing The Chairman: When you make that statement, could I to a principle like the sanctity of life. We have to actually ask what consideration you have given to people who have decide what it would be right to do, knowing that we could very clear faith arguments to the contrary? get it wrong, and in the paper I produced that further case because it is less clearly a case in which everybody would Prof. Harris: I would like to know what those people agree with me. would do in the policeman's dilemma case, and how they I think people were beginning to part company, and I would justify what they would think it appropriate to do. think it is everyone’s responsibility to think their way through cases like that. My own view is, having thought about it, it The Chairman: So, quite clear. I am just being clear that would still be the right thing to do, but it is a closer call. But. you have considered that, and that is your response. at what point it would still be a close call... You have to imagine, as I tried to do, the policeman hearing that driver Prof. Harris: I think anybody with... Whatever the basis, scream as he was burned and knowing that he could do I make no distinctions between faith-based objections or something to end the suffering, and still not doing it, even faith-based reasons for any actions and other good reasons though he could not ask the driver what he wanted, and I do - and I do not say that faith-based reasons are not good not think I would be ashamed of the answer that I gave. reasons - but all reasons are subject to scrutiny. No reasons, The Chairman: Your evidence seems to be, and the and no class of reasons, are immune from criticism, nor are examples you have cited particularly are, predicated on the they immune from the weight of evidence and argument that basis that people generally behave in a humane, human... might be put to them. reflect human values of love and respect and consideration. So, in that sense, I do not think there is any class of Sadly, in the real world, that is not always the case. What reasons that has supremacy. Faith-based reasons, like all checks and balances would you envisage that, in our case, other reasons, have to consider possible counter-arguments any regulations would need to reflect to include appropriate and circumstances in which what, apparently, their faith safeguards? dictates leads them into decisions that they would otherwise be embarrassed by, and I think the policeman’s dilemma is Prof. Harris: Before coming to the answer to your just such an embarrassment question, I do think that, broadly speaking, people are morally motivated. Most people, even those who disagree The Chairman: And you go on to amplify that a bit more with me, are decent people who are trying to do the on page 19 of your paper that we have before us, where you right thing, and it is all of our responsibility to make that talk about not only the scenario you described where the assumption on behalf of our fellows, to treat them as honest, driver is clearly asking for the policeman to intervene, but decent people and to respect their views, but having done in this case where the policeman... If I read it: so, we then have to think our way through to what the right course of action would be. ‘Now, consider a modified policeman's dilemma. Suppose the I think any society contemplating legalising or policeman can see what is happening, but cannot communicate with the driver. He sees the driver must be burned alive, but cannot ask what institutionalising voluntary euthanasia clearly has to have he wants or hear his requests.’ the whole enterprise very well regulated. There have to be clear criteria, and, in particular, there have to be clear criteria So, the policeman does not have that ‘comfort’, if you for obtaining consent and being assured that the consent is will, of the certainty that those are the wishes. Then you genuine and that the individuals are not coerced, and, of go on: course, the best way to do that is to actually try.
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Prof. J Harris Oral Evidence SELECT COMMITTEE, FRIDAY, 21st MAY 2004 51KCE
For example, many of the cases would be cases of death, and that is bound within their various codes of conduct, people who are ill, and most illnesses are progressive, so so could I just have a view from you: if we were to progress there is a long period where you could actually find out voluntaiy euthanasia by whatever means, how would you what people’s intentions would be at particular stages of see anyone overcoming that significant obstacle? an illness, long before pain or distress or, indeed, loss of competence overtake them, and make it impossible to get Prof. Harris: It is true that professional bodies of doctors a valid and appropriate consent But I am not a legislator, I like the British Medical Association are not in favour, as I have tried to think of these things, as it were, from the point understand it, of voluntary euthanasia, but I think it is not of view of principle. I am not proposing a Bill on voluntary true that it is unethical for medical practitioners to assist in euthanasia, and I am not a barrister who drafts legislation, the. death of individuals. They do it all the time. so I have not actually gone into all of the sorts of safeguards On any occasion when analgesics, pain-killers, are given and how they might work, but I do not think they are beyond in a life-shortening dose, which they very standardly are, the wit of man to devise. doctors are doing precisely that I know, personally, many of the surgeons who were involved in the separation of the The Chairman: Mr Downie. Manchester conjoined twins. They knew that their actions would involve the death of one of those twins. They took M r Downie: 1 would just like to put a scenario to you the view, and the courts upheld the view, that it was justified that you explained to us, built round this person in the car in those circumstances to save the life of the other twin who who was obviously suffering an awful death. How would could be saved. you feel if there was a criminal who had been charged on a So, I do not think it is wrong or unethical for medical number of occasions with serious crimes, murders, who had practitioners, or indeed any human beings, to assist somebody walked free from the courts for whatever reason, and who to die in appropriate circumstances. There is an issue of was involved in an accident on a quiet road one night, and, freedom of conscience, and I would certainly not suggest that although he might be trapped in the car, the police officer any medical practitioners should be ordered to assist, if they who was the first at the scene decides to shoot him in the do not like it, any more than medical practitioners are ordered head and set the car on fire? to assist in, for example, terminations of pregnancy if that is That is another analogy to the one that you have given, against their conscience. It is very important to maintain the and what we have got to try and do is look at these issues and freedom Of conscience for individuals, but I know that many see if there is a legal framework that provides a protection doctors would regard it as unethical to sustain people alive measure. After the inquest, the cause of death on both of who do not want to have their lives sustained, and whose those occasions, in the analogy that you spoke of, would be lives are made miserable by having their lives sustained in death by gunshot wounds, so using that perspective, I think, particular circumstances. would you not agree, we are in a very, very difficult area by using an example like that? M r Downie: You gave the quote there ‘appropriate circumstances’. I wonder if you could just broaden that a Prof. Harris: I do not think so. With respect, you put little for the Committee and tell us what you think appropriate to me a clear case of murder and, like you, I disapprove of circumstances would be for a person to be euthanased. it and would not condone it. I put to you a case where the facts were very different. The dilemma arises because, in Prof. Harris: I think it is very important, at this point, to some sorts of cases, facts are difficult to ascertain. That is be clear whether we are talking about, for example, medical an endemic feature of human life. assistance with medically-assisted death or whether we are There are cases where facts are difficult to obtain. There talking about the question, ‘In what circumstances should are cases where evil people can attempt to manipulate an individual be free to end their own life?’ circumstances. We are not ever going to eliminate those, I think all individuals should be free to end their own life and it seems to me that our policy should not be dictated by whenever they chose. It does not follow from that that they fear that, in some bizarre set of circumstances, a malicious should necessarily be entitled to assistance with that. If one person might manage to commit a murder under the cover is talking about legalising voluntary euthanasia, then one is of, let us say, voluntary euthanasia, any more than we should talking about assistance, almost certainly medical assistance, deny a society the benefit of general practitioners because we because we want the assistance to be competent and so on, know that there are people like Harold Shipman who may and, in those circumstances, I think we need, as societies, kill hundreds of patients and abuse their power. to decide in what circumstances there will be provision of We need the services of GPs. We know that puts huge medically-assisted dying. power into the hands of GPs and, just occasionally, as in As you probably know, there is a Bill currently in the the case of Harold Shipman, that power is abused by a English Parliament for medically-assisted dying in very particularly evil individual, but, it seems to me, the right limited circumstances, the Joffe Bill. That is one way to lesson to take from that is not to say that we will abandon go: that people have to be terminally ill and so on. It would general practice; the right conclusion to draw is that we will be a matter for you to decide in what circumstances you ry to regulate it as well as we can, that we will encourage would provide medical assistance with death. I, personally, people like coroners to be vigilant, and we will hope for the would provide it in all cases where somebody wants to die >est, but that is all we can do. and is unable to end their own life themselves for whatever reason; maybe they are institutionalised, maybe they lack the M r Downie: I think one of the dilemmas that the appropriate skills. Almost no proposals for the legalisation Committee faces is that ethically it is wrong for the medical of voluntary euthanasia use that model as the right model; •rofession and the nursing profession to assist in a person’s most want to insist, as in the Netherlands, that there be a
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Prof. J Harris 52 KCE SELECT COMMITTEE, FRIDAY, 21st MAY 2004 Oral Evidence background of illness and so forth. Do you think that, in your personal opinion, if we were I am not in die business of making policy recommendations, to go down this route, it should be restricted to a competent so I am not here to urge you to accept one model, or indeed adult? You did, in one of your answers, talk about people any model, of voluntary euthanasia. My own view is who are institutionalised, and, obviously, I think that would that end-of-life decisions are a matter for the individual flag up an area of concern. If somebody is institutionalised, themselves. One dimension of that entitlement is suicide; can they be, if you like, a competent adult? other dimensions of that entitlement are medically-assisted dying. I think, given how rare jurisdictions are that have Prof. Harris: Just on that point, I was using 'institution’ permitted euthanasia, all jurisdictions are reasonable to start very broadly. I have been institutionalised many times in cautiously, if for no other reason than that it is reasonable my life, usually for surgical operations, but I did not lose to take as many people with you as you can. You want the my competence on that account I did not mean in mental consensus of society. institutions necessarily, so from the fact that somebody is You have to decide, in the Isle of Man, what it would in an institution and, therefore, does not have to hand the be, to start cautiously in this area. I think that is not a matter normal freedom of movement and of action that other people for me. have, it does not follow that they are not competent or alert, but that point aside... The Chairman: Before we move to Mr Rimington, I have been advised that'we are speaking very softly, so I am M r Rimington: Right I think that was the area that could going to just move the microphone along, if you bear with be interpreted in many ways. That was a concern. Obviously, me a moment, John. say, elderly people who are in -
M r Rimington: Could you, for the record, just describe Prof. Harris: It is very likely - your background, if you like, who you are and what you do, what brings you to this position today? M r Rimington: - a residential home or nursing home are institutionalised, because they are physically incapable Prof. Harris: That is a very good question. Somebody of looking after themselves in their own home, but can still asked me, I think, is the short answer to that. read their newspaper and make conscious decisions. I am a philosopher by training. I have spent, I suppose, most of my academic career working in the field that is now Prof. Harris: Yes. I think it is important for us to generally called bioethics, which used to be called medical remember that. ethics. I suppose my qualifications for talking about these sorts M r Rimington: So, on this issue of consent then, how of issues are that I have studied this subject for 30 years and far away... ? I am sure you are not suggesting our legislation that I have written 15 books and over 200 papers on ethical should veer away from the competent adult, but you did issues, mosdy concerning the biosphere, many concerning discuss it in your paper and you have brought the issue medicine. I am a member of the Ethics Committee of the up. How far away from the competent adult, the persistent British Medical Association. I am a member of the Human request, should society even consider these issues, even Genetics Commission, which advises the UK Government if it cannot be by the mechanism of legislation, but has to on the ethics of genetics. be done on individual circumstances through the courts in None of that means that my opinion should be taken any each case? more notice of than anybody else’s. It seems to me that all judgements on ethics, but particularly those where matters Prof. Harris: Voluntary euthanasia needs to be just that; of life and death are concerned, must be assessed on their it needs to be voluntary. So, when we consider voluntary merits, so I would urge you not to take any notice of what euthanasia, we are only talking about the competent, and I say on the basis that I hold a professorship at an English it seems to me that if you concede the principle that the university and that I do all of this other stuff; you have to competent are entitled to make life-and-death decisions look at the evidence and the argument and the way that they about themselves, that is one whole area of responsibility. are deployed. In my paper, I was talking much more generally about a But, as I say, I did not invite myself here; somebody whole range of end-of-life decisions; I was not directing my invited me. I do not think I have any special standing, and I attention solely towards voluntary euthanasia. do not think you should think so, either. For those who are not competent, whether their incompetence is because they are too young, they are Mr Rimington: Obviously, the paper that we have had children, or because they have lost consciousness or for the pleasure of reading is about consent and end-of-life whatever reason, I think it is much more difficult to imagine decisions. The voluntary euthanasia that we have been sound legislation dealing in a general way with those. It looking at has been about the consent of a competent adult’s seems to me that it is very important that those sorts of persistent requests et cetera, and some of the cases that you decisions, decisions for people who are not competent, be have brought up as part of your discussion are where... Well, made on an individual basis by the courts. first of all there is the issue of the policeman and the window So, I would not propose any general legislation enabling that is closed. That was obviously one dilemma, and there end-of-life decisions to be taken on a class basis on behalf is that where people cannot give their consent because they of those not competent to consent. I think those decisions are in a persistent vegetative state or because they are not a should be made by the courts on the basis of the individual mature adult, as in the case of the conjoined twins, and there circumstances of the case, as they currendy are, certainly in must be many other circumstances where that occurs. the UK. But I think when you are dealing with competent
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Prof. J Harris Oral Evidence SELECT COMMITTEE, FRIDAY, 21st MAY 2004 53 KCE people, you can, as it were, have general legislation enabling Mr Anderson? people to voice their preferences about end-of-life decisions and permitting medical practitioners to respond to those M r Anderson: Can I just ask you: you stated that you requests. thought end-of-life decisions are matters for individuals themselves. Is that regardless of circumstances? Mr Rimington: As you are obviously very well trained in the matter of ethics, you must obviously delve into the Prof. H arris: I do not know. You give me some area of how resources are used, in terms of practice. One area circumstances and I will regard them. that I encountered years ago - indeed, I was in Manchester as well, the South Manchester Health Authority - was the M r Anderson: Well, for example, would you support discussion of renal dialysis. The unit had limited resources infanticide? because the pot was only so big, and the gentleman who was the head of that particular unit had to, in effect, make what Prof. Harris: Infanticide? (Mr Anderson: Yes.) End-of- might be called end-of-life decisions, in that he could only life decisions are of many different sorts, as I... It depends service with his unit so many people, and he had to decide, what you mean by ‘infanticide’. I supported the separation from his list of applicants, who was to come, knowing that the of the Manchester conjoined twins, which effectively lives of those who could not come might be foreshortened. was infanticide. It was a deliberate decision to operate on Do you see any relationship in that? conjoined twins, knowing that the operation involved the deliberate killing of one so that the other could be effectively Prof. Harris: It is a very acute question, and I think separated. If infanticide is described in that way, I am in there clearly is a relationship. Whenever somebody takes a favour of that particular instance of infanticide. decision which effectively denies an opportunity of life to The problem is we use a term like this and we imagine someone else that they might have had, for example, had people hurling babies over cliffs or something completely resources been available, they are taking a decision that ends inappropriate. This is rather like your question, Mr that life. If I need a transplant to survive, for example, and I Rimington. In fact, we are involved in decisions. If you do not get it because you think I am a lower priority than one take infanticide to be the deliberate killing of a child, then of your other patients and you are the transplant co-ordinator I think there are circumstances when that is justified, and I or the transplant surgeon, then your decision costs me my life, have given you one such case. and we see that, of course, in the general scarcity of organs If you wish to infer from that that I am in favour of for donation and a whole range of other areas. infanticide, you may do so but, as I say, one needs to examine And, of course, there are acute ethical issues as to the the cases on an individual basis, which is why I have said, appropriate principles that ought to be used to select between and continue to say, that where the individual themselves candidates for care, where resources are limited such that not cannot give a competent consent, these decisions must be all can be treated. I do have views about that, which I would left to the court. be happy to share with you, but I think they might be taking us a long way from our present set of issues. M r Anderson: Why do you think that the Hippocratic oath, Why I think your question was genuinely acute and Christianity, Judaism and Islam all forbid euthanasia? very important is that it is important to remind ourselves how common are end-of-life decisions, taken in societies, Prof. Harris: I do not think they do forbid euthanasia. including by medical practitioners, but by no means exclusively by medical practitioners. We are constantly, as Mr Anderson: You do not think they do? societies and as citizens, taking decisions which, effectively, result in other people dying. When we make decisions about Prof. Harris: No. I think that they uphold principles decisions about seat belts, about speed limits on the roads of the sanctity of life and they apply them in particular and a whole range of other things, we are taking decisions circumstances and not others. I would be very surprised if that we know impact upon the survival rates of citizens; the word ‘euthanasia’ is mentioned in the Koran. I certainly and I think it is useful to remind ourselves that we are not know that it is not mentioned in the Bible. I do not think only dealing in life and death when we are talking about they do forbid these things. I think that what happens, very euthanasia or capital punishment or something veiy dramatic; often, is that a theological tradition evolves, in which, at a we are constantly doing this. It is part of our responsibilities particular time, theologians of particular religions give views - 1 say ‘our’, meaning me as a citizen and you as legislators on an issue like euthanasia. - and I think it is helpful to remind ourselves that the Religions are rather like constitutions: they are much drama of life-and-death decisions is not only in these very more general, usually, subscribe to relatively general acute areas which attract a lot of attention, but absolutely principles. But, of course, religions, just like legislators permeates the patterns of our lives. I think it helps us to see and just like philosophers, can be wrong, and if there is a that this is actually not a great Rubicon but that it is part of religion that says that euthanasia in all its forms is unethical, our responsibility for our fellow citizens which is discharged I suspect they are making a mistake, just as we all may make in innumerable ways. mistakes.
M r Rimington: Thank you. Thank you, Mr Chairman. Mrs Hannan: Could I just go back to the policeman, really? The policeman was put in this difficult position. Can I The Chairman: I am just conscious of the clock and ask about doctors put in that position as well, your connection /our tight schedule, Prof. Harris, but if 1 come back briefly with doctors and talking about these sorts of decisions? Do o my colleagues. Mr Downie? (Mr Downie: No.) you think that this is the slippery slope that you were talking
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Prof. J Harris 54 KCE SELECT COMMITTEE, FRIDAY, 21st MAY 2004 Oral Evidence
about before, where doctors are put into this difficult position Sometimes they can and sometimes they cannot. and having to make more life-and-death decisions because Hospices, like hospitals, like medical practitioners, are of voluntary euthanasia may be allowed? infinitely variable quality. The fact that there is a hospice that somebody could go to does not mean that they will have Prof. Harris: I do not think they make more life-and- a pain-free or an anxiety-free - or a terror-free, in the case death decisions. Life-and-death decisions do not go away of Diane Pretty or Geoffrey Wamock - last period of their because you decide them in one way rather than another. life. That is the first thing. They are still a life-and-death decision, and die responsibility The second thing is that some people would not like for that decision rests with the person who is making it - 1 personally would not wish - to go to a hospice. I would It seems to me that we do not avoid decisions by having have as much horror of a hospice where people would, as it policies that mean that all decisions of a particular class are were, ‘manage’ my pain in their terms and condemn me to decided in one way rather than in another. a particular sort of death. I would regard that as taking away I myself am sceptical about slippery slopes. I think there my liberty, and I would be as terrified of going to a hospice as is only one question to ask if somebody mentions the phrase I would be terrified of a painful death. I am not... Hospices ‘this is a slippery slope’, and that is: skis or crampons? Do are great for people who want them, and I am very pleased we want to go up or do we want to go down? So long as we that there are hospices, and many people do want them, but Can go up and have the power to do so, then we should not many people, myself included, would not want them and be frightened of slippery slopes. We should just know which would prefer to manage their last days in a quite different way we want to go on those slopes, and that means deciding way. Even if - and this is, I think, a very big ‘if1 - 1 could be what is right at any particular point on the slope, and if we guaranteed a pain-free end to my life, I would nonetheless think this is right, we should not be afraid of making the not wish to end it in a hospice. right decision at this point on the slope, because a decision at another point would be wrong. Mrs Hannan: Thank you.
M rs Hannan: Do you think we discuss difficult deaths The Clerk: Just one very short point, if 1 may, Prof, enough, or is there enough information about... We are all Harris. You have given us the case of the policeman’s going to die, but do we talk about these issues enough? dilemma, the most obvious example being where the window is open, to test the principle. Do you see any difficulty in Prof. Harris: I do not think we talk about them nearly arguing from the particular to the general? Do you see any enough, and I do not think people think nearly enough. When room for the aphorism in this sort of discussion that hard they say they are against... For example, why I said that I do cases make bad law? not believe any people actually think that it is always wrong to deliberately take a life is because they have not thought Prof. Harris: I am not suggesting that we make law on of the... or they have not generalised their position to think the basis of hard cases. What hard cases tell us is whether about self-defence or to think about war or to think about or not we have a principled objection to particular courses dealing with terrorism. I was not just making a rhetorical of action. When we find that we do not have a principled point I think that that is literally true and I think we all should objection, we are then in the position of actually arguing think about these decisions much more generally, and there about which cases are justified and which are not, and hard is no substitute for public discussion and public education. cases do not help us answer that second question, but they Whatever I think about the merits, let us say, of voluntary do help us with the first question. They ftelp us see that it euthanasia, I would never recommend implementing it - or is either incoherent or cruel, or both, to think that we can trying to implement it even - in a society which did not always and without exception say that it is wrong to take the want it. You have to carry people with you, and the way you life of another human individual. Once we realise that we carry people with you is, of course, to get their consent That do not think that, we can start to think, hopefully, humanely, is why consent, not only in euthanasia but in democracy, compassionately and creatively about which cases in which is absolutely the sine qua non of whatever one does. So, we think we should do this or permit it to be done and which the more these things are discussed, the better and the we do not more widely people understand the reasons why one might So, I am not suggesting that... I use that case only to show consider something like voluntary euthanasia the better, but, that I do not think there is a person who does not think that of course, often these things are only adequately discussed if the policeman denied the quick death to that driver, they when people are taking them seriously, for example, when a would be doing anything other than something very cruel. proposal for legislation is brought forward, rather than simply You could understand that they might not do it, but they in the abstract and probably academic way that I have been would be wrong not to do it. We can leam from that doing it for many years. What we then do at the level of policy... When we are considering whether or not, as a matter of policy, a particular Mrs Hannan: Can I ask about... Is there any need for us society should give voluntary euthanasia, at least we can see to consider legislation such as this when we have hospices that there are cases - and I try to mention lots of others of and we are more in control of pain and death and dying, with them as well, the Manchester conjoined twins, Tony Bland situations controlled in a set situation? and so on - where we do think it right to end lives, and then the only remaining question is: in the case of voluntary Prof. Harris: Yes, for two independent reasons. Firstly, euthanasia, is it more like one of those cases or less like 1 think it is a myth to think that hospices are universally it? Is it a circumstance in which compassion, tolerance and effective in controlling pain, and I think the evidence bears respect for human life leads us in one direction or in another? this out. And that, I assume, is the question that you are considering
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Prof. J Harris Oral Evidence SELECT COMMITTEE, FRIDAY, 21st MAY 2004 55 KCE when you consider whether or not you should countenance EVIDENCE OF THE VEN. B PARTINGTON OBE voluntary euthanasia in the Isle of Man. The Ven. Archdeacon: Certainly. Thank you. The Chairman: Could I just conclude? I am conscious I am the Ven. Brian Partington. I am the Archdeacon of of the clock. Professor. Thank you very much for your time the Isle of Man, and I have been a clergyman for well over and efforts to come and give evidence. 40 years, all of that time spent in the pastoral ministry and Could I just ask if, from the perspective and the evidence much of it spent with the dying and the bereaved, as have my you have given us, you think that society and, as far as you colleagues, some of whom are with me this morning. can gauge, society in a small community like the Isle of Man I have considered afresh the theological and social issues would be enriched or impoverished by the introduction of which are around this area, and I have considered those legislation that causes such diametrically opposed views to again with my colleagues, the Church leaders from the come into confrontation? other denominations, and, as you know, we have submitted our views to you. We had hoped that all of us would have ProfL Harris: You do not avoid diametrically proposed had the opportunity to speak to you, in the way I am now, views coming into confrontation by taking one decision on because we all, actually, have personal views. We have tried a controversial issue rather than the other. You simply decide to consolidate those into the paper we have presented, but, which of those polarities is right, but you do not remove the obviously, we all come from slightly different angles. polarities. I could, of course, spend a good deal of time talking about One thing, I think, might be useful to say in conclusion, the theological reasons why I believe that life is a precious and that is that I think democratic societies like yours and gift from God and has to be used responsibly and valued. mine have a responsibility to respect human freedom and The vulnerable, in particular, are to be specially protected only to deny it when powerful reasons dictate that it be and cared for, whatever the age, sex or race, I have got denied, and I think all democracies are enhanced where the the greatest sympathy with all who are terminally ill, and democracy tries to maximise the area in which the citizen is especially those who suffer pain or fear death. free to decide for themselves the most important questions However, there have been such advances in pain control that confront their life. That is why we respect freedom of that there are very few situations where pain cannot be religion - quite rightly; that is why we respect many other controlled, I know, from my personal experience of being a freedoms. clergyman over 40 years ago, the time that one spent with It seems to me that the decision as to when and in what people in very severe pain and the difference to today. The circumstances your own life should end is probably the nights that I have spent - and others like me - with people most important and fundamental decision an individual can who were dying and whose pain was uncontrolled; today confront, and my own view is that it is part of our democratic that very, very, very rarely happens, and that is something, responsibility to leave that decision to the individual. I believe, which we have to take significant note of. What does exist is fear, whether it is fear of going into The Chairman: Are there any further observations you a hospice, fear of dying or fear of pain. The reality is, for want to make before we conclude? most people, that they, in fact, can cope with that pain, with the help and support of the medical teams, whether it is in Prof. Harris: No, thank you. their homes or in nursing homes, hospitals or hospices, and that is one of the great advances which I welcome and want to see developed in the coming years. The Chairman: If, again, I could thank you very much, I have been privileged to work with the hospice movement Prof. Harris. since it started here in the Isle of Man. I was, for many years, vice-chairman and, for eight years, its chairman, until 1996. . Prof. Harris: It was a pleasure. I now only have an honorary position and have no day-to- day dealings with it at all. However, within that movement, The Chairman: It was a pleasure to meet you. Thank one has seen that development, which I mentioned before, you. of pain control gathered and, although I was not involved in any way with the patient care, from my own pastoral work with people I was concerned with, the ability there for people who often were afraid to enter a hospice, but often The Ven. Archdeacon was called at 21.15 ajn. then found that they had tremendous help and remission, and were able to go about their life for, sometimes, many years before death came to them. Procedural For others, of course, life was much shorter, but they were able, within those weeks or days, to experience a The Chairman: Welcome to the Committee. I think you quality of life which gave their dying that real meaning of know everybody on the Committee. (The Ven. Archdeacon: ‘euthanasia’: dying well. indeed.) I am conscious that you have a tight schedule also, I believe that all medicine, pain control, is developing ;o we will not have any preamble. and is now excellent, but obviously we want to see it get Perhaps, though, if we could turn to yourself, if you better. Many of the developments in palliative care have vould like to introduce yourself for the sake of Hansard, been further developed and will be in the years ahead, and ind then if you have any introduction, and then we will go it is our hope, of course, that all the dying can have the very )ack into the question and answer, as we have just had with best care. ’rof. Harris, if you are content with that. The European Convention on Human Rights says
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Prof. J Harris Procedural House of Keys Select Committee on Voluntary Euthanasia - Evidence of the Ven. B Partington OBE 56 KCE SELECT COMMITTEE» FRIDAY, 21st MAY 2004 Oral Evidence everyone’s right to life will be protected by law. Whilst there say one or two things. First, in its narrow sense, euthanasia are exceptions, there are none to the absolute value of life implies killing, and it is misleading to extend it to cover that have permitted the deliberate taking of life in the alleged decisions not to preserve life by artificial means when it interests of a patient. I think the classic case, in 1957, the would be better for the patient to be allowed to die. Those Adams case, noted: decisions, coupled with the determination to give the patient as good a death as possible, are quite, in my mind, legitimate, ‘If the first purpose of medicine, the restoration of health, could no and those decisions should be taken in full consultation longer be relieved, there was still much for the doctor to do, and he always with the patient and their family. was entitled to do all that was proper and necessaiy to relieve pain and suffering.’ If all the care of the dying were up to the standards of the best, then there would be very few cases in which there I believe that the cases that have come since then have was even a prima facie argument for euthanasia. Better followed that principle, and some of the exceptional cases alternatives alleviating distress would almost always be which the previous speaker mentioned, of course, have been available, if modem techniques in human understanding and helped by that, and that is crucial. care of patients were universally practised. It should be the Whilst it is no longer a criminal offence to commit suicide, aim, whatever the cost, to improve the care of the dying in it is to assist die suicide of another. 1 am aware that the right hospitals and hospices and homes to as near this standard as to kill should be limited to the medical profession, and only money and staff will allow. Ignorance and mistaken ideas do in compliance with well-attested requests made by a patient exist, and they need to be addressed However, the financially who, when he or she made it, was in full possession of their stretched Health Service must not be allowed to forget or use faculties: that is the case made for voluntary euthanasia. euthanasia as an excuse for caring fully for the dying. That creates a dilemma for a doctor when a patient is To justify a change in the law to permit assisted suicide, not able to express their wishes. We have heard the case, it would be necessary to show that such a change would in America, today... Other doctors 1 know have told me remove greater evils than it would cause. I do not believe of severe road accident situations they have been involved that justification exists. For it to do so, you would have to... in and the difficulty of making decisions in those cases. I Such cases are few, and would be fewer still, if all medical would also mention such people as stroke victims, people practices were sounder. A change in the law would reduce with degenerative diseases and some disabled persons who the incentive to improve the practices. The legislation would are no longer able to make a decision for themselves. All of place some terminal - and, I believe, even some non-terminal those could inhibit the doctor’s clinical discretion. - patients under pressure to allow themselves to be ‘put 1 would like to point to the relationship between the away’, a pressure that they, at that time of their life, should patient and the doctor. Today, you have a great deal of be spared. It would also, in practice, be likely to result in confidence between a patient and a doctor, 1 believe, but I a recourse to euthanasia, in cases in which it was far from am not the only person in the world who fears the look of morally justified and would be performed for, I believe, the syringe when it comes, and for many people, in fact, that unsound reasons. becomes quite a neurotic feeling. In the rare cases, if there are any, in which it can be If, in future, the law is going to allow doctors to kill, even justified morally, then it is better for medical practitioners though under strictly circumscribed conditions, the effect to do all that is necessaiy to ensure peaceful dying, and to for many will be a disastrous blow to the confidence which rely on the flexibilities in the administration of the law which they have in their medical attendants. A Bill to authorise do now exist, than to legalise assisted suicide, which would euthanasia, while it may bring comfort to a sophisticated have to be subject to rigid formalities and safeguards for few, could well bring unease to the mind of a.much larger general use. Although there may be some patients whose number of patients and their families. relationships with their doctor would not suffer, 1 believe I mentioned human rights a little earlier, and we think of that, for the greater majority of patients, their confidence in the patient there, but there are also those rights of the family, their doctors would be seriously weakened. It would also put of the medical profession and of those in society around. an intolerable strain on the doctors themselves. One cannot demand of them on behalf of the other. My We concluded our remarks to you with the statement: pastoral experience shows that many elderly people already all our efforts should be in allowing everyone to live life to feel pressure. Very often, families would be horrified if they the full and to die in dignity, whatever their circumstances. knew what some elderly people say to their clergypeople Death should not be regarded as a failure, for it is part of or other visitors, probably their medical teams, as well, but the natural cycle. We sincerely believe that, and believe that many feel the pressure that they are holding up something this attempt to introduce voluntary suicide is, in fact, going happening in life, that they are stopping their family, perhaps, to inhibit our society rather than enhance it. having their house or their possessions and that they could benefit from them. The Chairman: I turn to my colleague, Mr I could quote individual instances, but those are all Rimington. subjective. But it is not uncommon. At the very end of life, there is a real opportunity for a closeness and a love to be M r Rimington: Thank you. expressed and shared. We, as a society, if we close this door, I have a range of things I could ask, but I have not are inhibiting the fullness of life to the end. Society has to formulated many of them. Just picking up on your last point, strive for the very best standards for all our people from birth obviously, death is part of the natural cycle, as you say, and to death, and to allow a ‘customer choice' devalues life and that natural cycle includes life, doesn’t it? I presume it would could well lead to a falling of standards in how we care for include life. And do we not make decisions about life and people. Convenience will replace care. the coming of life and the resources we put into those who Just to conclude my opening remarks, if I could just come into life, at that point of coming into life?
House of Keys Select Committee on Voluntary Euthanasia - Evidence of the Ven. B Partington OBE Oral Evidence SELECT COMMITTEE, FRIDAY, 21st MAY 2004 57 KCE
The Yen. Archdeacon: We make decisions at all points one looks at whether it is the health service, the educational in our life. I am not aware of your real question yet. service or any other part of the Government service that you have today, and you are partly here to administer, it is to see M r Rimington: You are saying there should be no that this was built on a Christian basis. intervention in the natural cycle, if you like, at death because death is part of it, but do we not make interventions all M r Rimington: Right. Okay. Obviously, I have just put through that natural cycle, including life at the beginning, in ticks against some of your paragraphs in your evidences. the sense that we apply medical intervention to bring about I think we would all agree that Hospice is a good thing. I life at birth, sometimes at great cost in resources to society, know that the previous speaker said for himself, personally, through special care baby units? That would not be part of he did not wish it. I think that is neither here nor there, in a the natural cycle but is an intervention. sense. It is there for those that do wish it, and it is, obviously, a very good thing. The Ven. Archdeacon: 1 am not saying there should be You said that your focus there was on the needs of that no medical intervention, and I have said about pain control. person who was in that position. If that individual’s need, Obviously, if a person is suffering firom pain, we do not wish as they see it - and I would venture to suggest it would be a to see that; we wish to help them with that, and that is a very tiny number of people who may pass through Hospice medical intervention. What I am saying is that we should not or are eligible to pass through Hospice, so small that it is unnaturally end their life. Obviously, some of the analgesics, infinitesimally small, but in the Isle of Man, at the most, a as we are aware, in pain control, will shorten life. They have handful in any one year - is to be allowed that option at that that effect. We do ¿at... That, to my mind, is acceptable if final stage of their life, why should they be denied? we are helping the health of the patient. The Yen. Archdeacon: You accuse me of using emotive M r Rimington: Can I play devil's advocate? It is language. I sat for an hour hearing a lot of emotive cases. obviously fair to say, in an issue like this, which polarises However, you are actually taking something which you do people or, certainly, divides opinion, that people take on the not have the facts for - and I do not have them here - about arguments that will appeal and suit their case on both sides, the numbers who go through Hospice Care. Hospice is a and, indeed, we will ¿ways take facts or evidence from both building; it is St Bridget’s, However, there are many, many sides and present it as facts. This is the nature of whether it more people who receive that care within the community, and is euthanasia or whatever we are talking about I would suggest to you that those figures are not a handful; And the root of, I would say, your objection, and that they are a very large percentage of people who are dying of your colleagues, is theological, your Christian belief, here in the Isle of Man. theological belief, and whereas I have no concern about that in the slightest, in many of the things that you talk about M r Rinungton: Oh, yes. I agree. you use the expressions ‘vulnerable’ and ‘pressure’, which are, in my mind, emotive terms and used in a manner to, if The Ven. Archdeacon: That was not what you said. you like, enhance your position. The real reason for your And secondly, the number of people who, I believe, opposition is theological, which I have no problem with, but would wish to have voluntary euthanasia would, in fact, should your theology, possibly, impose itself on somebody really be a handful, and we are seeking here to make law else's theology? for a handful of people and not the majority. There are the statistics which some of the media have quoted from popular The Ven. Archdeacon: I am glad you allow me to have vox pops of ‘What would you like to happen?’, where people a theology of my own, and I am grateful for that, (Laughter) say, ‘I would choose this for myself.’ because I think we each deserve it in society. My persona] experience is that it is easier to say that when This western society is built on Christian values, and to we are healthy and wealthy at 30 or 40 or even 50, but when dismiss those is to dismiss what this society is built on. I we come to that situation ourselves, people’s views change. think we should be, first and foremost, aware of that I cannot When we face death, priorities change, and what we find separate my beliefs from my life and my views, and I would important in life is that time one can spend with family and not wish in any way, shape or form to do so. loved ones, and that becomes the precious moment That is However, as I said at the beginning, for over 40 years I the kind of thing which reduces, at that point in life, this high have worked with people. That has been my primary work, percentage, when we are thinking about it, to the time when within communities, and many of those people have been it comes to us, to maybe a very small handful of people. vulnerable people, whether they have been ill or in other situations, and to help them, one has to bring in all the Mr Rimington: Sorry. I will not go on any more. I am resources one has. But your first concern is not to think, ‘God sorry if it came over incorrectly, I was referring to the fact that wants me to be here’; my first concern is, ‘What is the need the people who might wish to Consider voluntary euthanasia of that person, and how can we best and most help them?’ would be, on an Island this size, literally a handful, and that That was, certainly, why the hospice movement was was abstracting from elsewhere, larger states, and bringing created in its modem form, and why it is being developed the numbers down to the Isle of Man’s size. I think it equalled here in the Isle of Man and I hope will continue to develop one per annum, so obviously it would be a handful. and enhance the rest of the medical services to the Isle of Can I just ask for your comment, then, on what has been Man. put forward to us in the past about the situation in Oregon, So, we are, in fact, not trying to force our views on any where they do have legislation and it is within the hospice part of society. What we are trying to do, and I am trying to brief as well as, if you like, an end-of-life option, or an do, is to work within our society for a better society, and if end-of-life option in some hospices within Oregon? Of the
House of Keys Select Committee on Voluntary Euthanasia - Evidence of the Ven. B Partington OBE 58 KCE SELECT COMMITTEE, FRIDAY, 21st MAY 2004 Oral Evidence figures of people who have requested - and obviously even and statements like that, but that is an acknowledgement that the numbers of people who have requested are small - this we are getting weaker, and we cannot sustain ourselves as assisted suicide in their latter stages, only one in six of those we once did and a loneliness, perhaps, that comes in, rather were permitted because of the safeguards, if you like, in the than the desire that ‘I wish my life to be taken for me.’ situation, and then the actual number of people who took that decision through to the full was one in ten, indicating M r Downie: I think somewhere in your opening remarks, that, even having requested it and having been permitted it, too, you said you felt it was the duty of society to protect the individuals in fact then did not choose to do so. vulnerable, and we heard the previous speaker’s remarks. I just wondered if you had any views about people who may The Ven. Archdeacon: I cannot really comment about be in a vulnerable situation. Obviously, one of the contentious the Oregon situation. I have read different statements from parts of looking at what happens in other jurisdictions different sides. I have never been there. I have never studied regarding euthanasia is this fear that those who are vulnerable it, and I cannot really comment about that, but I believe what will perhaps not get an opportunity to have a say. I wonder you indicate, that the number reduces, is relevant if you could just give us your comment about that
Mr Rimington: Yes. Thank you. The Ven. Archdeacon:. I think that is very relevant I think of someone who was a Down’s syndrome person, Mr Downie: Yes. Archdeacon, you said in your opening who had been, in fact, suffering from cancer for some years remarks that during your many years of service in the and that came. She was in no position to make a conscious community in visiting people in their home, often those decision for herself. That could only have been made by terminally iU, you have seen great strides in the development someone else, and I think she was a vulnerable person. of medicines and techniques which have ended suffering to Within the life that she had, she had loved and enjoyed and, some extent I wonder if you would just broaden that out a even until her death, continued to do so. It would have been little bit for me. easy, I think, whether that was within the family or within the medical profession, for others to have made a decision The Ven. Archdeacon: 1 have used an example before, for her which would not have allowed her to live the life and it is a personal one. I mentioned spending nights with that she wanted until the end of her life. I think there are people. those of that case. In my early days of ministry, the only painkiller really Professor Harris, of course, was speaking of exceptional given was a morphine and it was in tablet form, and when cases, and I think it is relevant One of the most difficult people were coming to the end of their life, they could not illnesses that we have to face in society is the motor neurone, swallow. Often the family would ring for a minister or a and those of us who have been with patients with motor priest or a friend to go in and we would go late at night, neurone are aware and conscious of the very great difficulties. because that often ¡seemed when the pain was the worst, I think we should be aware that in the Diane Pretty case, of and we would sit there with them until the early hours of course, which was quoted two or three times this morning the morning, when, perhaps, they died or, perhaps, they felt - a very sad case in many ways, a very difficult case - Diane better or went into a sleep. Often, you would leave the house Pretty did not choke to death. She died peacefully. with your hand literally bunched up because they had been I think it is the fear which often, with motor neurone, is gripping through the pain. one of the worst things that they have. The actual facts, I The times when we get called out at night now are very believe, are quite different We have had a number of cases in few indeed, because the pain control is there. That is a very this Island and we will continue to have them, unfortunately, simple and personal analogy, and I do not want to base a but we have got to give them whatever love and care we can. whole lot... But I think it is evidence that the skills... The But they are amongst the most difficult ones. I mentioned loving nursing care was often there before, but the skills and earlier the vulnerable, and I think of those with degenerative the medicines and the aids were not What we have to do, as diseases who are no longer able and I think, particularly, a society, is make them readily available to all. whether it is because of personal experience or not, of many who have had serious strokes, crippling strokes, and they are Mr Downie: Right. During your many years, I suppose, very vulnerable to me. in the vocation that you have followed, did you often come across people with a view that they would like to exercise M r Downie: Thank you. their rights or, for example, ‘It is my life. It should be my decision’? What is your view on that? M r Anderson: Yes, thank you. Just a couple of questions to start with. It was good to The Ven. Archdeacon: Very limited. I think, as I have have somebody speaking from the sharp end, it was quite . said, in a general discussion at a philosophical level, people refreshing having somebody speak about that, but maybe you early in life would often express that. When it became nearer would like to just touch on the area of people that you are the time, it became, in a sense, much more real and people representing because, in your opening remarks, you said that did not feel that to that degree. the group was frustrated that individually they are not being I think what one has is another element, with many represented and you are actually representing quite a broad elderly people who are not necessarily terminally ill but are group of Churches. Is it fair to say that it is unusual to have coming towards the end of their life, because they are more such a consensus from such a broad group of Churches? frail and they are not as active. Perhaps their partner has died and they are alone, and often they would say, ‘I go to sleep The Ven. Archdeacon: I think it is fair to say we have at night and I ask Him that I do not wake up in the morning ’ not actually come together very often to look at issues, and
House of Keys Select Committee on Voluntary Euthanasia - Evidence of the Ven. B Partington OBE Oral Evidence SELECT COMMITTEE, FRIDAY, 21st MAY 2004 59KCE perhaps we should do that more often. That is our personal faith at the end of their life, but many, many families that criticism. I have shared with, not particularly because of my role as However» in this case, when I invited the other leaders a priest, but because I simply knew them, have valued that to join with me, we all came from our separate viewpoints, time as something quite exceptional, and that is something but what we had was complete consensus, and I think that we have got to help people to understand. Whether that is is to be noted across the Churches. Individual Churches, in in their homes or in hospital or wherever it is, that is the their denominational roles, have, in fact, produced a lot of kind of quality of living until the end that we have to help work in this. people to have. The Joffe Bill, of course, is going through the House of Lords at the moment, and the Committee is meeting on Mr Anderson: Thank you. that. The Churches across the spectrum are involved there You, obviously, work very closely with people looking in studying those and putting in their input at a very deep after and caring for people in their last years, and nurses level, as they are in other social issues. We, in the paper we and doctors in particular. Do you think that a change in our produced, were in total agreement We have not gone out for legislation, if the legislation of all the jurisdictions round our Synod votes to endorse what we have said. We believe about was in any way different to ours, would be sending that we are addressing you as a group of responsible Church out the wrong message to the people we are trying to attract leaders, and we hope you will take it in that way. to the Island to work in that profession? However, our church people are aware that this has been going on and we have been doing this and, as far as I am The Ven. Archdeacon: I am sure it would have a very aware, we have had total support from them. No-one has negative reaction in various ways. One would certainly be contacted me from my own denomination or anyone else’s to the community outside. Certainly, in my dealings with to say, ‘We do not agree with you on this.’ people in other islands, I have had a reaction already to the consideration for this, in a veiy negative way. I think Mr Anderson: Thank you. it would have a very negative reaction within our own It was very interesting to hear your positive experience of community, because life then becomes purely a commodity Hospice, obviously being very closely involved in that over to be discarded when we no longer wish it, and I think that the years. Do you think there is a case for more education is something which we have got to be very careful about I in this area, having listened to the previous speaker this believe it would have a negative reaction within those who morning? There seemed to be an implied fear there of the we depend upon so much, our nurses and doctors and carers. hospice movement, and maybe we are better educators in They who work so hard to give us health and a quality of life the Isle of Man than in the UK in that sense, because the are then able just to switch it off, and I believe that we have Hospice is very central and very well respected in the Isle got to be very careful that we do not go down this way. of Man. Do you think there is a case for educating people about the role of Hospice to take those fears away? Mr Anderson: You obviously visit people in different stages of their illness. Do you see differences in their moods The Ven. Archdeacon: I think it is not just Hospice; I as their health goes up and down and their attitude to life? believe we have got to start with talking about dying. I think we have a fear in society about dying, and, therefore, we do The Ven. Archdeacon: Yes. Obviously, people do, at not address it It is only when it becomes very real to us that times, become very depressed and worried, so we very we actually begin to look at the issues, and I believe at an often find that from one day to another... The second thing, earlier age we have got to think about dying as a natural part of course, is that often when a visitor goes - I could be a of life, as the very end of our normal life. We also, I believe, visitor - they put on that great brave face. The alternative have to help people to know what can be done in healthcare,. is, very often when a family member leaves, that they, in right through life, from the tiny child right through to the fact, will then say for a few minutes the things that really very oldest person. concern them, and then they pass on and try and put on the In the Hospice, of course, what is crucial - and has to be brave face again. There is a great deal of unease and fear and within the Health Service as a whole - is everybody has to anxiety, and that can lead, of course, to our mood changes, be treated as an individual and with respect, and when that as you call it happens, they are not being treated as numbers or cases, but as people who have real problems. Then things happen. Mr Anderson: Just finally from me - 1 know you have I have seen, many people go into St Bridget’s, in fact, got a tight timetable - do you think that people that are in whether it has been just for some pain control or for some the position we are talking about...? How many people care on a temporary basis, or whether it is for that final do you come in contact with, in all the period of time that terminal stage, who have had a fear they were crossing a you are pastoring people, that...? Are we talking about a door they would never leave, and that is an understandable very limited number of people that would be making this fear. I think what one has to show is the quality that can be request and, as a result of that, do you think that we should there to the very end of life, and the vital moments for me, be making legislation for a minority group when we should in all my experience with Hospice, have been those hours be making legislation to protect the majority? Would you go before a person has died which they have spent with their along with that argument that any legislation that we should family, when they have been able to express their real love be putting into place should not be for a minority but should for one another, sometimes to say, ‘I am sorry for what we be for a majority? have got wrong in the past’, and been able to share the simple things together. The Ven. Archdeacon: From my subjective view, I have Often that involves faith because they begin to talk about not met anyone who has said to me that ‘1 believe that I
House of Keys Select Committee on Voluntary Euthanasia - Evidence of the Ven. B Partington OBE 60 KCE SELECT COMMITTEE, FRIDAY, 21st MAY 2004 Oral Evidence should be able now to have my life ended’, even those who are saying? have been very severely ill and even, in early years, when there was more pain. I believe that they, in fact, are all really The Ven. Archdeacon: It depends what you arc meaning wanting to enjoy what they still have. I am sorry. I have lost by that the track of your question there. Mrs Hannan: Euthanasia means just a ‘good dying*. M r Anderson: What I am really saying is: do you think we should be making legislation for a minority group, The Ven. Archdeacon: Well, euthanasia means being opening it up to a larger vulnerable group? The ‘slippery killed. slope’ argument could come into being. Mrs Hannan: No, no. I think it is what people read The Ven. Archdeacon: 1 have not used the phrase into it - ‘slippery slope’ all morning. I do not particularly like it, but I think there are dangers if we make legislation for a very The Ven. Archdeacon: Dying well is what I would see. small minority of people, who I believe that to be only... If you are talking about pain control, then what it seems to me is the patient is saying, ‘Please help me to have my pain M rs Hannan: Surely, in a democracy, it is up to the controlled.’ If that is such a strength - majority to look at issues such as this, which are very difficult issues, and even if it is only one person that we Mrs Hannan: But if you are consenting to the delivery are talking about, it is something that, in a democracy, we of pain relief - 1 think you said pain relief and ending of should consider? suffering - on one hand and on the other hand you have got someone who actually consents to... Maybe it would only The Ven. Archdeacon: I think we have got to consider be a week’s difference in that person’s existence... We are the situation in democracy, and I am not opposed to it being talking about Hospice, we are talking about the relief of pain, considered in this kind of way. we are talking about the good work that is going on, but we However, I think we have got to act for the common know that, within that situation, that person is going to die in good in this as well, and if what are the rights of one person the very short term, in most cases. I just cannot understand inhibit others, then what is that right? I would suggest that, how they are consenting to pain relief and ending suffering in this case, it is not. which might lead to their death, but they cannot consent to what you were saying, they cannot consent to it happening Mrs Hannan: Could I ask about the legislation that this Tuesday, as opposed to next Tuesday. surrounds the operation of Hospice? What sort of legislation does Hospice come under? The Ven. Archdeacon: It depends on which day you go shopping, I suppose. The Ven. Archdeacon: It comes under the legislation that we have in the Isle of Man at the present from the operation Mrs Hannan: No, it was not about that. I am talking of treatments, just as any other medical establishment about dying.
M rs Hannan: So, there is consent when someone enters The Ven. Archdeacon: I appreciate that. I am being Hospice for whatever treatment that you talked about, relief facetious. of pain and suffering? Mrs Hannan: The majority of people - the majority - 1 The Ven. Archdeacon: Yes, of course, and I think that accept do not want to die, but we all are going to. Would is one of the crucial things. I think the medical profession you accept that? has a very difficult task, because their philosophy is to help people to be well and to care for their good health. When The Ven. Archdeacon: That is what I have said. Yes, we one moves to a terminal stage, it is helping them to die well, all are. What I am saying is - and that is a different philosophy. I think that is a very difficult one and one it has taken, Mrs Hannan: This consent I am looking for - in many places, the medical profession some time to come to terms with. The Ven. Archdeacon: It is - There is that transition, but it always has to be under the legislation that we have available and it always, in Mrs Hannan: You are consenting on one hand, and on particular, has to be with the full knowledge and consent of another hand you are saying that somebody cannot - patient and family. I believe it is there where they take on the responsibility, and if, when it is explained to them what The Ven. Archdeacon: What I am saying is that we are the treatment is, it is for the patient to say, ‘No. I do not relieving suffering, and that is relieving pain and distress, want that’, then it would seem to me always to be wrong to and we do that under, obviously, the medical direction to enforce it So, it should be the freedom of the patient at that relieve that suffering and distress to such an extent that they point to say what they wish, in the full knowledge, when it can actually be peaceful, but to give it in such a strength that is explained to them. it would actually kill them there and then is wrong. But what we are allowing them to do is to allow that Mrs Hannan: If a patient requests a good death within strength so that there can still be a quality of life. Those of Hospice, then that should be adhered to, is that what you us who spend time there know that people very, very often
House of Keys Select Committee on Voluntary Euthanasia — Evidence of the Ven. B Partington OBE Oral Evidence SELECT COMMITTEE, FRIDAY, 21st MAY 2004 61KCE have great periods of clarity with their families, almost until up to the fact - 1 think we all accept it - that resources are the time of their death, and that is helped by that relief of scarce. Could you assist the Committee with your views on pain. how the question of allocation of resource should be dealt with when it is a question of prolonging life or hastening Mrs Hannan: You do not think that could happen under death in a particular instance? somebody making a decision to enter into a request to die? Let us say we have an instance where a patient is You do not think» then, that they could have that same terminally ill. They are going to die anyway, and it is quite relationship with their family, where they could actually talk certain they are going to die in six weeks. If they die in through the issues that they wish to approach in a competent one week, it will save resources that can be used to help way, if they decided that they wanted help with dying, as some other patient. What are your views on that type of opposed to relieving pain that you are talking about? situation?
The Ven. Archdeacon: Obviously, people have got to The Ven. Archdeacon: I came in this morning thinking talk through - we hope they will talk through - together the I was a pragmatist, and that a philosopher was an idealist I issues, but what we are saying is that it should not be ended found almost the reverse as I sat here this morning. by a direct action, but it should be ended naturally when I do not believe that we can actually make law for these relief has been given. financial reasons. We actually have to look at the principle, and the principle Mrs Hannan: It is surely not naturally, then, is it? is that we care for all. There are always going to be difficult decisions - some of those decisions will be decided by The Ven. Archdeacon: Yes, it is natural. courts, some of them will be decided by committees or politicians or doctors - and we cannot avoid those, but the Mrs Hannan: Surely, if it was natural, you would allow principle surely has to be that we care for all to the fullest people to have the pain and die. It is - extent and we try and make - and part of our responsibility, as a society, is to try and make - those resources available The Ven. Archdeacon: I think we are all clear - for that to happen.
Mrs Hannan: You are intervening by helping. The Clerk: Do you see that translating into an unlimited obligation in society to make resources available to sustain The Ven. Archdeacon: This is going back to what Mr life where possible? An unlimited obligation? Rimington was saying: we are intervening from birth right through life in different ways, and that is part of caring for The Ven. Archdeacon: Ideally, yes. But that is in every people, which I would ascribe to. other area of health and care, as well. I am not saying that that exceeds for children in infancy and so on; what I am saying Mrs Hannan: If we introduced legislation, would is that our aim and goal is always to provide the resources the Churches be involved with people who make this to give the fullest care to all our people. decision? The Clerk: But if, in the real world, it cannot be done, The Ven. Archdeacon: With the medical profession, there is a decision to be made. do you mean? The Ven. Archdeacon: But that decision then has to Mrs Hannan: No. With the patient themselves, with the be made in the light of the circumstances, not by creating person that had made the decision. law.
The Ven. Archdeacon: That is obviously at the discretion The Clerk: What criteria are to be applied? of the patient. If a patient wishes us to, we would be. However, there are many, many times that I have spent The Ven. Archdeacon: Can we come back to another with the patients when the issues have been before a patient select committee on that one? I think there are major issues and then they have not wished to discuss that with me. - and they are largely political issues - about the criteria that That is totally, totally their business, and I respect their we apply, but I think to dismiss people because they have independence in that worked their useful life or come to a stage where they are physically no longer going to be capable is to remove, to my Mrs Hannan: But if somebody made that death decision, mind, the divine nature of life that we have been granted. do you think the Churches would be - ? Here I come back to theology, because it believes that is the gift that we have been granted, to have life, and that The Ven. Archdeacon: We would not wipe our hands of we have to use it to the full all our life, and if we devalue them; we would care for them, in life and death. someone’s life at the very end, in their vulnerable state, then we are going to devalue life throughout. Mrs Hannan: I think that is fine. Thank you. The Chairman: Thank you. I am conscious of the clock, The Chairman: Thank you. Okay. and you have a pressing engagement. Archdeacon, could I ask you: how would respecting The Clerk: Could I just ask about allocation of somebody’s informed consent to make an autonomous resources? We have heard Prof. Harris say that we must face decision to end their life at the timing and in the manner
House of Keys Select Committee on Voluntary Euthanasia - Evidence of the Ven. B Partington OBE 62 KCE SELECT COMMITTEE, FRIDAY, 21st MAY 2004 Oral Evidence that they choose... As you said, it would close the door for The Chairman: Yes. We have kept you until the last everybody else. How can that be? moment. Is there anything that you would like to complete by saying, Archdeacon? The Ven. Archdeacon: I think that if we accede to a person’s request to end their life, then we are, in fact, going The Ven. Archdeacon: Only that I would emphasise that to influence other people. It is going act on other people, all my experience, all my faith and knowledge of people, impinge on other people’s lives to a very great extent, and is that if we were to take this step in the Isle of Man, it that is something which seems to me not acceptable. would be a great error and we would do our people a great disservice. The Chairman: So, people are entitled to an opinion, they are entitled to voice that opinion, but that is going to The Chairman: Thank you. We will have a five-minute be disregarded because - ‘comfort break’, as I think the Americans call it.
The Ven. Archdeacon: I think we have discussed the issues to the full with those people. The Committee adjourned at 12.13 p.m. and resumed at The Chairman: But we do not accede to their 12.20p jn , when Ms Annetts was called. request? Procedural The Ven. Archdeacon: Not to unnaturally end their life. The Chairman: We welcome Ms Annetts, from the Voluntary Euthanasia Society. I think you have heard The Chairman: Right Prof. Harris gave a very extreme, evidence today and, with your agreement, we will maintain perhaps, example of the police officer who was in the the same format situation where the lorry was on fire. You heard it described. Perhaps if we turn to you for an introduction, and then we will have a question and answer session, and then you What would your reaction be if you were in that unhappy can summarise if you wish. position, like the police officer? I am conscious of the clock, and what 1 would suggest is that we, with your agreement, stop about one o’clock The Ven. Archdeacon: I think that we are talking about and have a lunch break until two o’clock and then resume, exceptions, and I think we should be very clear, and I do and if you still are in the middle of giving evidence, then not believe that you make law or principle on exceptions; I - (Interjection) Oh, I beg your pardon, two thirty, so we will believe we make it on more general principles. go a little bit after one o’clock, then. But either way, when I am very aware of other ‘battlefields’, as I would want we resume, if you would care to continue with your evidence to term them, situations where hard decisions have had to - are you content with that? be made. It is, in a sense, inescapable that you would try and help the person. Ms Annetts: Very much so, thank you. I think it was Mrs Hannan who mentioned: where would the doctor be in that kind of situation? I have known The Chairman: Thank you. Okay. We will hand over situations where doctors have been in that kind of situation. to you, then. There have often been alternatives to the gun. There have been some cases - and, obviously, I am not going to look at that one, because I do not know any more about it than we heard - where an injection can be given which allows sleep EVIDENCE OF MS D ANNETTS for that person whilst they continue to work around them. Evidence commenced There have been cases where people have been, it seemed, in impossible situations where, in fact, they have been rescued Ms Annetts: Thank you. and life has been restored to them, and, I think, until the very I would like to thank you very much for calling me to give end, we have got to work for that end. evidence to this very important Committee. I am conscious that this is a very controversial issue that you have decided The Chairman: I was not quite clear, if you were in that to examine, and I think it is because it is so controversial desperate position, what would your action be? that it is important to dig quite deeply into the evidence and to look quite critically at assumption and assertion, so a lot The Ven. Archdeacon: Until I was in that situation, I of what I am going to be talking to you about is actually would not give you an answer to that, because I think one evidence-related, although there are some anecdotes, as well, has got to see, in that situation, what the options are. We which I would like to share with you. only heard one option this morning, I am not sure there was Firstly, I have brought with me a briefing for the only one option. Committee, together with a copy of the Bill which is currently being considered in the House of Lords, which The Chairman: No. I am just trying to give you the may be of some assistance to you. opportunity to offer an opinion if you wish - By way of very brief introduction, after leaving university I worked in the Health Service, and I worked with patients The Ven. Archdeacon: I have been in many cul-de-sacs who were seriously ill with cancer. I think it was seeing the in my life, and that is one I do not wish to go into. suffering of these patients, and what not being able to ask
House of Keys Select Committee on Voluntary Euthanasia — Evidence of the Veil. B Partington OBE Procedural House of Keys Select Committee on Voluntary Euthanasia — Evidence of Ms D Annetts — Evidence commenced Oral Evidence SELECT COMMITTEE, FRIDAY, 21st MAY 2004 63 KCE for medical help to die did to them, that really started to Court, she only had a very few months to live. In the words make me question why we cannot have a law which offers of Judge Stein, who was one of the Law Lords who heard patients that opportunity. her case, he said, Following the Health Service, I then retrained as a lawyer and worked in the field of Human Rights and in particular ‘The suffering of Mrs Pretty is acute, and she is frightened and was responsible for taking some of the very first cases under distressed at her short but bleak future. She is in some physical pain, but more importantly she is in constant dread of the day she will no longer the Disability Discrimination Act in the UK. be able to swallow or breathe. She wishes to be spared the suffering I am here today on behalf of the Voluntary Euthanasia and loss of dignity which is all that is (eft for her. She wishes to control Society (VES), which has about 50 members on the Isle when and how she dies’. of Man. It was started as an organisation in 1935, and its campaign has always been to change the law, so that people And that was really what Diane was all about. She did who are suffering unbearably from a terminal illness can ask not want to have to go through those last few months of her for medical help to die, and I think that voluntary aspect is life. She wanted to say when enough was enough and say, incredibly important, and we must never lose sight of it 41 now want medical help to die. ’ She had had hospice care VES was actually founded by doctors and lawyers and throughout the last year or 18 months of her life, and that ministers of the Church, so I think it is very important to put hospice care had been very good, but it did not meet what that in context We, ourselves, see this option very much as she wanted Indeed, in that last week, her suffering became within the context of palliative care, and, as Mrs Hannan extremely acute. She could not breathe, she was suffocating, has already pointed out, ‘euthanasia* actually comes from she was choking, she was in terrible, terrible distress. the Ancient Greek and it means ‘I want a gentle and easy I spoke to her husband nearly every single day, and after death*; it means nothing about killing at all, and I think most about three or four days of the most appalling suffering, the people would want a gentle and easy death. medical team decided that the only thing they could do for Interestingly, if you look at what the public position is in her was to sedate her So, she was sedated, which means put relation to assisted dying, you will find that 75 per cent of into an artificial coma, and she died four days later. So, yes, people on the Isle of Man support a change in the law, and she had a peaceful death, because she was sedated, and I indeed, in the UK, there has been some polling done around think that is something we must bear in mind: the very real religious groupis and it has been found that 83 per cent of level of distress that this law causes. Protestants - and this was an NOP poll carried out -and 73 The problem with which Diane was faced was that if per cent of Catholics favoured a change in the law, and I think Brian had helped her to commit suicide, he would have there has been a confidential survey of doctors on the Isle been charged with breaking the law and he could have gone of Man, which has shown that over one third of them had to prison for 14 years. The irony is that if Diane had been received requests for assisted dying. So, this is an issue which bom in Belgium or in Switzerland or in Sweden or Finland doctors confront and the general public confront, and I think or Germany or France, in none of those countries is assisted I would absolutely accept what the last speaker said, which suicide a crime. Therefore, her husband would have been is that we do not talk about dying enough in our society. We able to help her to die without fear of prosecution. try to put it into a comer, but, of course, it is something that In other countries, such as Norway and Denmark, the we are all going to have to confront at some stage. penalty for assisted suicide is as little as 60 days, so, in In the VES office, which is based in London, we receive England and Wales and in the Isle of Man, we have some hundreds of letters and e-mails and telephone calls every of the harshest laws in Europe. year from people with a terminal illness who want to know However, that does not stop the fact that medical whether they can get medical help to die. 1 just want to read professionals do help patients to die, and they do so at very you two very short letters, and I appreciate that they are quite great risk to themselves. So, irrespective of what the law emotional letters, but I think it is important that we realise may say, patients are asking for help to die and doctors are that there is an emotional aspect to these cases. helping them to die, so what we have is a situation where there is a very real divide between what the law says and *My father has recently been diagnosed with motor neurone disease. what is actually happening in practice, and that is a grave He does not wish to become like Diane Pretty. Before that point is reached, he would like to end his life. Is there any advice or information matter of concern, I think, in relation to society and also the on how to do this? He knows paracetamol overdose is fatal, but this doctor-patient relationship. is not a pleasant death. Is it possible to go to Holland? Please give us The effect of these laws which prevent doctors helping any advice.’ their patients die at the patient’s request - and I always come back to the patient - is that patients may try to end their That is a letter that comes into us, and we see many other lives by themselves, and this can lead to botched suicides, letters like that Another letter and, again, we see the results of that in the VES office. Alternatively, patients may go to Dignitas in Switzerland, 'My dad is dying of cancer and is starving himself to death. He wants and I think last weekend there was another reported case of to take his own life and is talking about asphyxiating himself. He asked me not to do anything to prevent him. What can I do? Is there anything somebody going to Switzerland for an assisted death. So, we I can do to help him end his life with dignity, and without distressing cannot shut our eyes to the fact that, even without a change others unnecessarily? Urgent Please help ASAP.’ in the law, people are trying to find a way to get them the death that they really want Of course, Diane Pretty was a particularly well-known Both the National Council for Hospice and Specialist person who had a terminal illness, and I had the very great Palliative Care Services and Macmillan Cancer Relief, honour of knowing Diane over the last 18 months of her life. amongst other organisations, have recognised that, even with She was 40 years old when she contracted motor neurone the very best palliative care, this still does not meet the needs disease, and when she made her application to the High of everybody, and I think that is a very interesting point, that
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Ms D Annetts - Evidence commenced 64KCE SELECT COMMITTEE, FRIDAY, 21st MAY 2004 Oral Evidence even the National Council for Hospices says palliative care way around. cannot meet the needs of everybody. Indeed, Jan Jans, who So, I think we have to be very careful and always go back is a leading Catholic theologian who was based in Belgium to the evidence and have a look at what it actually says. and is now based in the Netherlands, has said that helping Looking at palliative care, will palliative care be someone to die is sometimes the lesser of two evils from a adversely affected? Again, we have to go to Oregon, to the theological standpoint. So, I think that is another important Netherlands, to Belgium, where there is legislation, and point to bear in mind. we will find that additional resources have been put into And the experience of the British Isles is not unique. palliative care. I do not think anybody wants patients to take If you look at Oregon, people who are terminally ill there this as the ‘easy route out’, if you like. Everybody wants receive some of the very best hospice care in the whole of to see full palliative care, so that the patient can make an the world. It has an extraordinarily high level of hospice informed choice. provision, with everybody being entitled to hospice care. Just lastly, touching on the legislation which is before Everybody can get access to a hospice at the time of need the House of Lords in London, what we have tried to do - Having said that, the latest report from Oregon, which is take on board the evidence and knowledge from the was last year, showed that 93 per cent of patients who actually Netherlands, Oregon and from Belgium and come up with a had help to die were in a hospice at the time. So, again, what piece of legislation which will give patients a choice and will you see there is a coining together of hospice provision and protect the vulnerable as well, but will also give doctors some also including in that the possibility of medical help to die workable guidelines, because at the moment they just do not as one of the many options made available to patients. have them. Doctors are making decisions all the time about Indeed, if you go to Oregon you will find that the Oregon withdrawal of treatment, and withdrawal of treatment will health service there has produced a little leaflet which it gives lead to that patient’s death in some cases. Following Bland, to all of its terminally ill patients, and it talks through to the there have been a whole number of guidelines coming from patients everything that could happen: refusal of treatment, the GMC and the BMA around withdrawal of treatment so withdrawal of treatment, double effect, terminal sedation, doctors are not left in the dark, and I think it is important we medical help to die - all those are listed as options that the do the same in this area, given that we know doctors will be patient should be aware of. So, the patient is fully informed faced with these requests. So, we must not just leave doctors as to what is on offer at the end of life, and I think that is trying to manage this as best they possibly can. very important. Lastly, I would like to say to you that the evidence is not I am not saying we should prefer one over the other, what there that there is abuse or a slippery slope; the evidence is I am saying is that full range of options should be available there that it is helping people at possibly the worst period of to the patient, with as much information as possible, so they their life, when they are suffering unbearably from a terminal can make the right decision for them, and that is incredibly illness. What a change in the law might do is just give these important. people some comfort that if their suffering becomes too Looking at the research that has been coming out from unbearable, they can have help to die. In short, the fear of Oregon, Dr Linda Ganzini, who is the psychiatrist there, and dying has been a little lessened. Thank you. a leading researcher in the field, has found that the people who ask for help to die are certainly not vulnerable; what The Chairman: Mrs Hannan. they are is people who like their own independence. They like to do it their way. They want control. Mrs Hannan: Where do I start from there? In your But, also, other evidence from Oregon, I think, is very experience, do patients entering a hospice consent to all that important when people say it will only affect a few people. happens in a hospice? That is correct inasmuch as only a few people actually go all the way through the process, but an awful lot of people will Ms Annetts: I think it rather depends on whether they want the option, and I think that is essential to understand: are competent or not competent. Obviously, if you are that a lot of people who are dying want the option, almost as competent, then part of the process for treatment must be a safety net, as an insurance policy, so if things get too bad, if that you obtain that patient’s consent, and that is absolutely their pain is too great, if their loss of autonomy is too great, at the heart of all medical treatment if the indignity is too great, they can ask for medical help However, because of the legislation, there is a problem to die. Indeed, it has been found that the almost "insurance as to whether that consent is always informed consent. I policy’ aspect of legislation is very important for prolonging am thinking in particular around double effect, because life and for taking away some of the fear from that process the patient may well say, ‘My suffering, my pain level, is of suffering and dying, and that is very important. absolutely unbearable. Help me, Doctor’, and the doctor If we think that, even the Royal College of Physicians may well then give them quite high dosages of morphine. found, in 2000, that for 20 per cent of patients experiencing Whether there is then a discussion between the doctor and pain in cancer, that pain cannot be relieved adequately, and patient as to the fact that that could result in life shortening, that is even within palliative care services. So, I do not think I am not always certain that that takes place. that we should think that pain relief can cure everything; it I think that is a problem which results from our can go so far, but not all the way. legislation. Our legislation stops proper communication Another point I would just like to pick up on was whether and consultation. So, everybody, in a sense, is working the doctor-patient relationship would be adversely affected. slightly in the dark, I think, and I think that is something There is absolutely no evidence to suggest this at all. Again, we need to really address, very much so, because if you are going back to Oregon, what has been found is that where dying, I suspect most people do want to know exactly what doctors say, ‘I am not going to help you’, that has adversely is happening to them, so that they can give their consent or affected the doctor-patient relationship, but not the other withhold their consent whatever it may be.
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Ms D Annetts - Evidence commenced Oral Evidence SELECT COMMITTEE, FRIDAY, 21st MAY 2004 65 KCE
Mrs Hannan: Would that be a written consent? Mr Anderson: You left work for the National Health Service - Ms Annetts: I do not think it really matters. I think when ' you are having an operation, certainly in the UK, you do have Ms Annetts: In 1985, and since I commenced working to sign a consent form, and, of course, there are things called for VES, in 2001,1 lecture about once a month to senior and living wills, where you can write exacdy what you do consent junior doctors, and hear from them their own experiences in to and you do not consent to, in terras of treatment relation to end-of-life care. But, often, treatment decisions have to be made in a more informal process and, therefore, there is not anything Mr Anderson: So, is it fair to say - just confirm this in writing. Hopefully, there will have been a discussion for me, if you would, please - that you have never actually between doctor and patient, and the patient will have been worked in a hospice environment? informed about all the various side effects, and then can make a decision. One would hope that that is happening, because Ms Annetts: No. I have never worked in a hospice it is part of medical practice. I think it is very important environment. and you, as a trained professional in this area, will fully understand the importance of patient involvement in all M r Anderson: We, as a Committee, have already medical decisions: Consent must always be at the heart of heard evidence about the developments in palliative care, everything. certainly over the last five years, and the effect that has had on people in their last years, and I heard a figure, I think, Mrs Hannan: But you do not think it is necessarily a that you quoted there that there was still a large percentage written and full, informed consent? of people that could not be helped through palliative care. I am just wondering if you could confirm what that figure is, Ms Annetts: In relation to assisted dying, I think it must because it does not seem to be the same as the one that has be, absolutely, yes, and I would say that the legislation we been quoted to us. have been working on with Lord Joffe focuses very clearly on identifying that proper, full, informed consent has been Ms Annetts: It was a figure which was established ascertained. by the Royal College of Physicians’ investigation into There are a number of safeguards which reflect whether palliative caie. They conducted their study in 2000, and consent has been obtained, and indeed, on two occasions, the their investigation came up with the finding that 20 per patient must say, ‘I want help to die’ and on another occasion cent of patients could not be helped, in terms of pain relief, adequately. he must write a declaration saying, ‘I want help to die’ and he must also be seen by a palliative care professional. Mr Anderson: So, that was in the year 2000? So, there is a very formal process to identifying exacdy what the patient wants, because it may be that that patient’s Ms Annetts: That was in the year 2000. needs can be answered not by medical help to die but perhaps by better pain relief or physiotherapy or something else. Mr Anderson: Okay Thank you. That is the problem with our legislation at the moment; - You also quoted some figure about the Isle of Man, and we cannot have that full communication. I am just wondering where you got that figure from. I think you quoted that 75 per cent of people in the Isle of Man Mrs Hannan: Can I just take you back a step, then? I propose a change. Would you like to tell us a little bit about am just trying, to identify what happens in a hospice, about that figure? consent for any treatment that they have in a hospice. In your experience, is it a full, informed consent is it a written Ms Annetts: That was a poll which, I think, was carried consent or is it just an acquiescence? out by the NOP. It was conducted on the Isle of Man, quite recently, to find out what people felt about a change in the Ms Annetts: I am not a hospice worker, so you probably law, and 75 per cent of people felt that there should be a need to talk to somebody who works in a hospice. I do not change in the law, so that somebody who was suffering know if there is always that full consultation. The person I unbearably from an incurable illness could have medical knew well, in that situation, was Diane Pretty. I do not know help to die at a time of their choosing. if she was fully consulted about that sedation, and what would happen as a result of that sedation. I do not think she Mr Anderson: You have touched on a change in the was, but I think the hospice workers knew exactly when she law. Do you believe that legislation should not discriminate was going to die, as a result of that sedation. I do not know against people? if that is of help. Ms Annetts: I think all legislation has the capacity to Mrs Hannan: There was something else. I will come discriminate, in a sense, in that at the moment I think you back to it, if I may. have to be 18 years old in the UK to be able to vote. You could say that is discriminating against the 15-year-old who Mr Anderson: Okay. If I could just ask how long ago it cannot vote. I think that is one of the jobs of Parliament: to was that you worked in the National Health Service? make those distinctions as to who should be permitted certain rights and who should not Ms Annetts: It was some years ago. It was 1983 when I think, as far as possible, we make those distinctions I started work, but I regularly - on the basis of evidence, so that we can formulate the best
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Ms D Annetts - Evidence commenced 66 KCE SELECT COMMITTEE, FRIDAY, 21st MAY 2004 Oral Evidence possible public policy for all of our citizens, and that is why Ms Annetts: Again, it is a question of making sure you we have Parliament to undertake that role. have appropriate safeguards in place. There is an irony around the legislation which is proposed in the House of M r Anderson: Would you not agree, though, that we do Lords, in that, if somebody makes a request for help to not, at the moment, discriminate in health legislation between die, they will be attended by possibly four doctors - the different groups of people? attending physician, the independent consultant physician, the palliative care physician and possibly the psychiatrist Ms Annetts: We may not discriminate in terms of - before they work their way through the process and have legislation, but certainly, if you look at the types of healthcare help to die. So, that is a lot of doctors doing a lot of checking, which are available to different communities on the basis of and, indeed, some academics from the Netherlands and demographics, there is clear discrimination. Belgium have criticised us for being too weighty in the safeguards. If you look - M r Anderson: But it is not based on legislation. Mr Anderson: What safeguards, sorry? Those proposed Ms Annetts: It is not based on legislation, but it is in the Joffe - definitely based on allocation of resources and geography and demographics. Ms Annetts; Yes, in the Joffe Bill. If you look at what happens in hospitals at the moment, around refusal of M r Anderson: Just moving on, then, to the scenario of treatment and withdrawal of treatment, certainly in the allowing voluntary euthanasia for competent people, do you mainland, in the UK, you do not get four doctors going not think that, in a way, is discriminating against those that through that process. So, in fact, a withdrawal-of-treatment cannot take that decision? decision is much more likely to be wrong and based on faulty evidence than somebody asking for help to die and being Ms Annetts: Absolutely, and I feel perfectly comfortable given help to die. with that distinction. At the heart of this decision must be competence. If you M r Anderson: Just going a step further, then, do you do not have competence, then I do not think that person can agree that, if legislation was to come in place, that could, in possibly be given the responsibility and the freedom, if you fact, flavour somebody’s decision? If people thought they like, to make a decision. were vulnerable, and they have gone through all these steps That is a public policy position and it is based on many with all these sets of doctors, or whatever, but because there is different principles. One of them, of course, is the need to legislation and they genuinely thought they were a burden to be able to protect the vulnerable, and I think - as, I think, their families, their carers, even the National Health Service, everybody else in this particular field thinks - that it is very they might take that decision? important that the legislation we come up with promotes autonomy on the one hand, but protects the vulnerable on Ms Annetts: I think that is a very important point, to look the other hand. at burden. Again, if you look at the Netherlands, I have asked So, it is a question of finding the right balance. In my doctors who have helped patients to die about this question of mind, the right balance, as far as I am concerned, is that you burden, and they have said, ‘If somebody says it is because have to be competent, you have to be an adult and you have they are a burden, or we have any indication it is because to be terminally ill and suffering unbearably, in onier to be they are a burden, we would not help them.’ able to get over that first hurdle. You may take a different Compare and contrast with the UK, where there is view and say, ‘Well, perhaps non-competent people should no legislation, so there is no checking and there is no go into that grouping as well’, but I would feel uncomfortable transparency and nobody knows what goes on at the end with that distinction. of life, and the person who is terminally ill, suffering unbearably, says to the doctor, ‘I want help to die, and M r Anderson: Would you not agree, though, that there actually 1 think it is because I am a burden’, that doctor is a very fine line between depression and mental illness? may still help that patient to die, and that patient may well die. We have no idea what goes on. We only see sometimes Ms Annetts: Again, go back to the evidence. I think it is one or two cases come through, but in the vast majority of really important, and I say this because I am a lawyer and I cases - and we know that one in seven GPs have helped a cannot help it Lawyers always want to see evidence; that is patient to die - they never come to the surface, which means just the way we are. But if you go back to Oregon and you that the vulnerable are much more at risk in a system where look at the research which has been done by Dr Ganzini, who there is no transparency and no regulation, and for me that is a psychiatrist - and she is not for or against the Oregon is one of the most critical reasons why there should be a law, she is an academic researcher - she has found that the change in the law. people who go through with the request for medical help to die and are helped to die are not depressed, and what she M r Anderson: Would you not agree, though, that if that found was that they had much higher levels of independence was the case and that was one of the reasons people would and autonomy and control and, if anything, they were less not be allowed to take that decision, they certainly would likely to be depressed than people who did not ask for help not show any signs of that to the medics? to die, which I think is a very interesting finding. Ms Annetts: I think part of what the doctors - and do not M r Anderson: Just going on from that, then, do you forget there are four doctors involved - are looking at is to believe that doctors sometimes make the wrong diagnosis? find out whether it is a settled response, whether the person is
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Ms D Annetts - Evidence commenced Oral Evidence SELECT COMMITTEE, FRIDAY, 21st MAY 2004 67 KCE depressed, whether it is about something else. I do not think The Chairman: So, I think the context, as we were doctors are stupid; I think they would find out whether this having it suggested to us, is that there are a great number is something about burden, rather than suffering unbearably of deaths in the Netherlands which are contrary to their from a terminal illness. legislation, and it is almost - And we must always go back to what this is about: as far as the UK proposal is, it is about somebody who is in Ms Annetts: No, I do not think, so. Having met senior the last three or four months of their life, dying from cancer, representatives from the Royal Dutch Medical Association, motor neurone disease. Those are the illnesses which tend to these are very serious people who have got government generate patients asking for medical help to die. funding to put in place a whole process to ensure that doctors who are involved in end*of-life care are properly trained Mr Anderson: Okay. Thank you. in relation to palliative care, properly counselled, properly understand the different motivations of the patients et cetera, The Chairman: Ms Annetts, could 1 just ask for your because they understand how important it is to make sure response to comments that we have had from people who that this whole area is properly regulated and properly have previously given evidence? First of all, in your opinion, transparent. It is not in the least bit cavalier. does the Netherlands have almost a blind-eye attitude to the I think we are cavalier. I think the UK is cavalier because application of voluntary euthanasia? we have not done any research. We have not got a clue how many doctors are ending patients’ lives without their consent Ms Annetts: Absolutely not. The Dutch, I think, have not a clue. I think that is cavalier. a very open approach to what happens at the end of life, and I think it was because they were concerned about The Chairman: And if we move to Oregon, could I ask doctors making decisions where they were not necessarily you what your response would be to the suggestion that their accountable that made them start looking at end-of-life palliative care system has been devastated as a consequence regulation. of the introduction of the Death with Dignity Act? It is important to understand that the change in the law in the Netherlands was not actually about patient choice;, it Ms Annetts: I do not know where that statement has was about regulation of medical practice, which is something come from. Certainly, from the contacts I have had in quite different What was found, from the Remmelink reports Oregon, with the Oregon hospice movement there, they - and these were reports funded by the Government and were ambivalent about a change in the law, which one undertaken by independent academic researchers - was that might expect but I understand from some of the senior nurses within the hospice movement there that they are now in some cases, doctors were making decisions, life-ending very supportive of the legislation and for this reason: they decisions, without obtaining the consent of the patient. This were concerned that sometimes in a hospice - and this does is before there was a change in the law. This was during happen - patients with a terminal illness killed themselves, case-law changes. and they killed themselves perhaps because the pain relief They found that was happening in 0.8 per cent of deaths, was not adequate, perhaps because of loss of autonomy, but and the Dutch Government was very concerned about this, they ended their lives, it was suicide. and wanted to know how they could come up with a process They were very distressed about this, and what they which would make doctors more accountable. That is where found, as a result of the introduction of this legislation, is the change in the law has come from, and that is why, every that the suicide level has gone down, and that goes back to five or six years, there is a Remmelink report, funded by the the legislation being an insurance policy. So, it gives people Government, to find out what is happening, in terms of end- hope. It gives them the will to continue to live, so that if of-life decision-making. The Government wanted to reduce things get too bad, they can ask for help to die. that level of end-of-life decisions being made by the doctors So, in fact, the hospice movement has become quite rather than the patients. supportive and, as I said before, 93 per cent of patients who Interestingly, Belgium, right next door, thought, ‘We receive help to die are in a hospice programme and they should do the same. We should look at what is happening have, I think, some of the highest levels of hospice provision at the end of life and see whether doctors are ending lives in the US. without patients’ requests’ - which is a very serious matter, and I do not think anybody would say it is not - and their The Chairman: Just finally, for me, at the moment, researcher, Dr Luc Deliens, again an academic, published could I ask you: what is your reaction to the comments research in The Lancet in 2000,1 think it was, which found we heard earlier that life is a commodity to be discarded that there were 3.2 per cent of patients dying through doctors and convenience would take over from care, as a result of ending life without consulting with the patient As soon introducing this type of legislation? as that statistic came out, the Belgian Government said, ‘Right We have got to legislate so that the patient can be Ms Annetts: Personally, I think most people regard their more involved.’ life as incredibly precious. We go through life making very So, it is interesting. People think this issue is about serious decisions: who should we marry, should we have choice. In fact, where governments have legislated, it has children, where will we live, what job will we do? Those are been much more about trying to make doctors accountable all very important decisions that we do through our lives. and trying to make the whole dying process much more The decision in relation to how we should die, I think, will transparent so that the vulnerable are protected. always be just as important and serious a decision, and I do I am sorry. That is a rather long answer, but I hope it is not see a change in the law having any effect on that It has helpful. not had that effect in Switzerland, Oregon, the Netherlands,
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Ms D Annetts - Evidence commenced 68KCE SELECT COMMITTEE, FRIDAY, 21st MAY 2004 Oral Evidence
Belgium. I do not see why we should be any different M r Downie: Okay. You mentioned earlier on Oregon, and you felt it was a natural progression that, as part of the Mr Downie: Just to broaden that last statement that you operation of a hospice, there should be a further facility made, we might wish to choose when we have children, what available for assisted dying, perhaps operated by the people job we do, where we live, what type of car we buy, but are who run the hospice organisation. Could you just broaden we in a position yet where we can choose our place and time that out and... of death, and how we are assisted to die? Ms Annetts: I am not saying hospices should do this Ms Annetts: We do not choose what illnesses we suffer at all. What I said is that, from VES’s perspective, we see from. None of us choose that Some of us will be unfortunate medical help to die as within a range of options, which and we will contract a life-threatening condition like cancer you could call palliative care options. It so happens that, in or motor neurone disease, but during that process we will Oregon, the hospice movement has incorporated medical make decisions as to what treatments we want, and what help to die into the range of options that all patients are treatments we will not want, and some of those decisions informed about So, they have taken that particular step.' will have an effect on how long we live. And we can do There may be hospices in the UK which would feel very that now: if you are suffering from cancer, you can decide uncomfortable with that There may be some that feel to refuse chemotherapy, which may have ah adverse effect comfortable. As with doctors and nurses, you will get all on how long you live. kinds of different views. So, people are already making those decisions now. People make decisions about refusing treatment, which could M r Downie: That brings me onto the next question, lead to the end of their life, and they do that. So, what this is which is: the NHS, as you will know, being a former about, I suppose, is saying there will be some people where employee in the NHS, contains a varied mixture of cultural, refusal of treatment if they did that would lead to a very ethnic and religious backgrounds. We know that the question long and agonising death. If you try and starve yourself to of assisted suicide, or euthanasia, is outwith the principles death, as I know some people have tried to do with motor of the BMA and the Royal College of Nursing. How would neurone disease, it is a very long and agonising death, and you see the progression of the Joffe Bill, based on the they do not want that. They want help to die, and, personally, situations within the Bill where authority must be given by doctors working within the Health Services? There is a huge I think that if we are a humane society, we should try and dichotomy there. find a process for giving them that choice, whilst looking after everybody else. Ms Annetts: I think consultation and discussion are very important here, and I am in regular discussion with doctors M r Downie: Okay. The Joffe Bill that is currently before within the Royal College of Physicians and the BMA in the House of Lord’s Committee, I would just like to ask: are relation to this issue, because we cannot go forward without you going to be giving evidence to that Committee? being fully inclusive of everybody who has a role to play, and that is incredibly important. Ms Annetts: I do not know. We will wait to see. At the moment, die BMA has said that it does not want to see a change in the law. However, the Chair of the Medical M r Downie: Are you likely to be giving evidence? Ethics Committee of the BMA has said that he thinks perhaps the law should be changed. So, again, you do not Ms Annetts: I might be called, yes. get uniformity of view within the BMA, and I think doctors are split about 50:50 in the UK. M r Downie: And then I want to ask you about Dignitas in In the RCN, the RCN has said, ‘We do not want to see Switzerland. I take it that that is a service that is not available a change in the law’, but recently I think it was the Nursing on the state; it is a paid service and only available for those Times who conducted a poll of nurses, and they found that, I who have the ability to pay for it Is that right? think, two out of three nurses wanted to see a change a law. So, as I say, you get differences of opinion. That is why it is Ms Annetts: 1 am troubled by Dignitas. I am troubled by so important that there is discussion and consultation. Dignitas. In Switzerland, like many of those other countries I At the moment with refusal of treatment decisions, if a have mentioned, assisted suicide is perfectly legal. As I said, patient decides to refuse treatment and, as a result of that we are unusual, in that assisted suicide is not legal. decision, the patient will die, which is something patients My understanding - and I do not know much about can do, the BMA, the GMC, the RCN et cetera have all Dignitas - is that you pay £40 or something to become a issued guidelines about their professionals and their ethical member and then, I think, you are asked to fill in some concerns around that Those guidelines say that, if you have forms and then, as and when your time comes, off you go to a conscience problem with this, you are permitted to opt Dignitas. There is no regulation. There is no transparency. I out and I would see the same exactly happening with this know people from the UK have gone and have been helped particular proposal. to die. I find it very troubling that people who are terminally Mr Downie: If we had legislation in the Isle of Man with ill are in a situation where they feel they have to join an an opt-out clause - a tiny hospital in UK terms, everyone organisation in Switzerland to get help to die in a small room known to each other, and, obviously, in my area, if anyone in Zurich. I question how we can have allowed ourselves whom I represent is terminally ill, I generally get to know, to end up in that situation. I do not think it is the right way and 1 try and spend a bit of time with the family or assist the to go. family in some way - would you not agree that it is an area
House of Keys Select Committee on Voluntary Euthanasia — Evidence of Ms D Annetts — Evidence commenced Oral Evidence SELECT COMMITTEE, FRIDAY, 21st MAY 2004 69 KCE that is going to cause difficulties for the profession, even in Ms Annetts: Yes. It goes back to the previous point a small area like the Isle of Man? I was making about consultation and discussion. I think we felt very strongly that it was not for us to come up Ms Annetts: I think it is very right for you to pick up on with all the fine detail around a monitoring commission, the distinction or the difference between different countries because this legislation is going to need input, from the and different states, and that is why I am not saying you medical professionals in particular, in how we go about should follow the Joffe proposal at all. monitoring. I think if you are going to go down this route, you need So, one of the things we have been talking to doctors to find a distinctive Isle of Man proposal, which is what about is, ‘What would you like to see? How would you like Oregon did. Oregon is just a very small state in the US, and the monitoring to work?1 and that can all be contained in a they have come up with something which is quite limited, separate set of regulations, which is how the UK legislation but seems to work quite well for them, and I would suggest would work. So, you would have a set of regulations to go that perhaps that is something that may be of interest, to look alongside the Bill, following discussion with all the key at, say, Oregon and how they work, because that is a very professional bodies, to set up an appropriate monitoring small community there, as well. commission.
M r Downie: But there again we are faced with the M r Rimington: What about the view - and I am just problem that we have with the BMA and the RCN, because playing devil’s advocate here, I am not sure myself - that if, all of the doctors working on the Isle of Man - and nurses say, legislation was to come forward in the Isle of Man, the - have affiliation with those two organisations, and if they detailed prescription that you have got in the Bill in terms of are not willing participants or they are, as I say, willing safeguards would be better replaced by general principles, or participants, they could be struck off. less detail, and that the detail is in regulation on thé grounds - and I can think of the counter-arguments - that you are Ms Annetts: I think if there is a change in the legislation, not going to get it right first time and you are entering into a the professional guidelines will change as well. That will new field? If the detail is in primary law, then it is difficult to just happen, and it does actually say in the Joffe Bill that unravel. If the detail is in regulations, then it is easier. this will not prejudice your professional standing within Ms Annetts: I certainly see that argument. I think this your professional body. So, in a sense, what the Bill does is the second draft that we have put forward to the House of is it directly gives them an exemption provision in their Lords and, following the first draft last year, we had a lot of professional guidelines. Do you see what I mean? discussion with senior palliative care doctors, in particular, about their concerns. It was as a result of their concerns that M r Downie: What takes precedence, the Joffe Bill or we built in yet more stringency in terms of safeguards and the - put in, in particular, something called the palliative care filter. So, the complexity is as a result of consultation. Ms Annetts: The Joffe Bill would take precedence. It may be that that is just not the right way forward for the Isle of Man, and I think that would be highly appropriate, I M r Downie: Over any rules that the associations may think everybody has to find their own answer to this particular have? issue and the right thing for your particular culture.
Ms Annetts: Yes, but again you still need to consult and Mr Rimington: Lastly, a lot of focus has been placed discuss. I think that is really important. on the Remmelink reports and they have been used by many parties to say, ‘This illustrates all the bad things that M r Downie: Thank you. we consider about euthanasia. ’ I know that the Remmelink reports were all done prior to legislation in the Netherlands M r Rimington: Actually, I have only got very little in coming in. Do you expect to see change since the legislation the way of questions, especially as time is moving on. First has come in? of all, just in terms of the Joffe Bill and just in comparison with the Netherlands Bill - this is getting a bit legalistic - the Ms Annetts: I think the Dutch are working very hard Joffe Bill is structured in a very prescriptive manner - to make sure that doctors fully understand the legislation and their obligations. 1 think I would be surprised to see the Ms Annetts: Yes, it is. numbers of people using the legislation changing. I think it probably will stay at where it is. M r Rimington: ~ and outlines all the conditions and I think the incidence of reporting may well continue safeguards et cetera in quite a detailed form and has a to increase. I think the levels of non-voluntary euthanasia relatively small section on the monitoring commission, will continue to go down. So, I think there will be the odd the overviewing body, whereas the Netherlands Bill is the little shift, but I think that is not because of the legislation; opposite. It sets out general principles of care that must be I think that is because the Dutch doctors have taken it upon exercised by the medical profession - there is a relatively themselves to do a lot of training and education and to learn short section on that in terms of included safeguards - and and to continue that process of learning. then a huge quantity of die legislation is about a monitoring commission and how it is overseen by the state. Do you Mrs Hannan: Could I just ask: in the Joffe legislation, have any views on what the right balances of how legislation there is a ‘qualifying patient’ term, which means a patient should be...? who has reached the age of maturity and who has been
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Ms D Annetts - Evidence commenced 70KCE SELECT COMMITTEE, FRIDAY, 21st MAY 2004 Oral Evidence resident in Great Britain for not less than 12 months at the system, it is incredibly good. It is very, very good indeed. date, so obviously there is some way of stopping ‘tourism’ for this sort of requirement Is 12 months deemed to be long The Chairman: We do not have any more questions. enough? Shall we hand over to you, if you would like to summarise or conclude? Ms Annetts: In Oregon, it is six months, and in the Netherlands their provision is a ‘settled relationship’ with Ms Annetts: No. I think I have probably spoken far too their family doctor, rather than a residence provision. So, much, anyway I have nothing further to say. again, I think it is a question of finding what is right for you. I think, given that 'terminal illness’ in this definition means The Chairman: Perhaps, then, at 2.30 p.m. we could that the person is facing death within three to four months, see if there are any other issues, but otherwise, thank you that makes the residence provision of 12 months okay. I think very much for taking the time to come. that seemed to be a comfortable compromise, given all those other definitions of residence. Ms Annetts: Thank you.
The Chairman: Could I just finish? We have plodded The Chairman: We will adjourn now until 2.30 p.m. on, and I hope we have covered things, but maybe we could ask if we could take a lunch break to have a chance to go through your evidence, and maybe at 2.30 p.m., if anyone The Committee adjourned at 1.25 pm . wishes to recall you, if you could be available if that would and resumed its sitting at 2 JO p.m. be... (Ms Annetts: Yes.) Thank you. Picking up on some of the questions my colleague, Mr Downie, mentioned, could you tell us if there have been EVIDENCE OF MS D ANNETTS any doctors or nurses who have been struck off professional Evidence concluded registers for acting within the law in other jurisdictions with regard to this issue? The Chairman: We have had a technical difficulty at the very outset What I think we will do, Ms Annetts, if you Ms Annetts: This gets into a very complex area. You will agree, is to start afresh. are talking about the legislation permitted them to help somebody to die (The Chairman: Yes.) but the professional Ms Annetts: That is fine. regulations said no? (The Chairman: Yes.) The Swiss are currently changing their professional The Chairman: As I was explaining, just to make regulations, so that doctors can be more involved in relation the Hansard, Ms Annetts, from the Voluntary Euthanasia to helping to die. Going back to Switzerland, their provision Society, has given us some information and the opportunity is that assisted suicide is legal provided you do not financially to recall her. So, thank you for that Mrs Hannan. benefit So, the Swiss doctors are looking at broadening their professional regulations to take account of their law. Mrs Hannan: Thank you very much. In Germany, where assisted suicide is legal, doctors have Maybe I could ask a question in relation to a recent article been known to be on public record saying, ‘I have helped in the British Medical Journal entitled ‘Assisted Suicide* by somebody to die.’ They have not been struck off, even Richard Huxtable, a lecturer in medical law and ethics at though it is against their professional rules of conduct In one the Centre for Ethics in Medicine, University of Bristol. He instance, he was demoted - one doctor, I know, was demoted comments about the Voluntary Euthanasia Society and its - but he was not removed from the professional roll. change of name from Exit back to the Voluntary Euthanasia Society, so I wonder if you could just cover those issues, The Chairman: Just to extend that, if a Dutch doctor please. is practising and he or she engages in assisting a patient to die, which is lawful in that jurisdiction, would they then Ms Annetts: Right, okay. As I mentioned previously, find that they would not be allowed to practise in the UK before lunch, the Voluntary Euthanasia Society was set up afterwards? in 1935 by doctors, lawyers and ministers of the Church. In the early 1980s, it decided that it wanted a snappier name and Ms Annetts: I do not actually know the answer to that went for Exit and I think it was Exit for about two years, and 1 think if a Dutch doctor comes over to the UK and starts then it went back to the Voluntary Euthanasia Society. practising in the UK, he would have to comply with our law. One thing I would just like to go on and explain: I have I think that is the basic point. been Chief Executive of VES, now, for over three years, and it has become clear to me that our name does not actually say The Chairman: A nurse or a doctor who has practised in what we do. What we do is we support patient choice at the Holland, engaged in this practice, who then came to England, end of life, whatever that may be. So, we would be supportive would not automatically face a block - of a patient who wanted to have life-sustaining treatment in the same way that we would be supportive of a patient who Ms Annetts: Absolutely not and I know of people who wanted to refuse treatment We are just supportive of that ... I am not sure if I know of doctors, but, certainly, of Dutch patient’s choice at the end of life, and we are probably the nurses who have worked in the UK, having worked in the leading supplier of living wills and advance directives in Netherlands, and I do not think that there is any problem the UK. So, because of that, our name does not really say there. Indeed, from what I have seen of the Dutch medical what we do, and we are thinking about having another look
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Ms D Annetts - Evidence commenced House of Keys Select Committee on Voluntary Euthanasia - Evidence of Ms D Annetts - Evidence concluded Oral Evidence SELECT COMMITTEE, FRIDAY, 21st MAY 2004 71KCE
at our name and whether we could come up with something Dr Harris: Thank you very much. which better represents what we do, which is basically about patient advocacy. The Chairman: I turn over to you.
Mrs Hannan: Yes, I think that is...
The Chairman: David? EVIDENCE OF DR B HARRIS
Mr Anderson: Just one thing from this morning: you Dr Harris; I am Dr Ben Harris. I would first like to quoted that doctors in the UK are currently split 50:50 about thank the Select Committee for giving me the opportunity a change in the legislation. That is contrary to the figures of contributing to the investigation into voluntary euthanasia that we have received, that it was 3:1. in ray capacity as representative of the Isle of Man Medical Society. Ms Annetts: I think the BMA had a vote at their I have been Medical Director, for the last 10 years, of St conference in 2002 and it was split 50:50 there, and there Bridget’s Hospice, but I am not here today representing the have been a number of polls carried out amongst the medical Hospice. That role will be fulfilled by Mr John Quinn, the professions. I think there was one by Medics last year and it Hospice Chairman, in due course, I understand. came out at about 50 per cent for, 50 per cent against In preparation for speaking to you today, I sent a So, I think there is lots and lots of data out there. I think questionnaire earlier this month to the 148 doctors of the Isle the one thing that is clear is that doctors do want to be of Man Medical Society to assess their views on voluntary involved in the process and do want to be consulted, so it is euthanasia. There were 85 replies, which is 57 per cent of important we listen to what they say. them. The highest response rate was amongst GPs, at 69 per cent. In this statement, I will report the findings of the survey Mr Anderson: Thank you. and include additional comments that the doctors made. The HippOCTatic oath was written 2,500 years ago and The Chairman: Could I just ask one question, Miss states: Annetts? Does the Voluntary Euthanasia Society have members who also practise different religious faiths? 'I will use my power to help the sick to the best of my ability and judgement I will abstain from harming or wronging any man by it. I Ms Annetts: Absolutely. I am always amazed by the will not give a fatal draught to anyone if I am asked, nor will I suggest breadth of religions represented within the VES. We have any such thing.’ practising Methodists, Unitarians, Quakers, Catholics, The British Medical Association is the modern voice of Muslims, Jews, C of E, as well as Humanists. So, we have British doctors on ethical issues. The BMA has consistently everybody. opposed voluntary euthanasia and physician-assisted suicide. This view has been repeatedly confirmed by annual The Chairman: Thank you very much for your meetings. evidence. In the year 2000, the BMA held a two-day conference to promote the development of consensus on physician- Ms Annetts: Thank you. assisted suicide. Overwhelmingly, BMA members from a wide range of moral viewpoints agreed that they could not recommend a change in the law to allow voluntary euthanasia and physician-assisted suicide. In the survey I conducted for Dr Harris was called at 239 p.m. this hearing, 75 percent of Manx doctors agreed or strongly agreed with the BMA view, compared with 19 per cent against. This rose to an 85 per cent agreement from GPs, Procedural with only 9 per cent against Examples of their comments included: The Chairman: We will turn to Dr Ben Harris on behalf of the Isle of Man Medical Society. ‘This is outside all ethical and moral beliefs that are central to my Dr Harris, thank you. If I just introduce everybody, it practice of medicine. I would not be prepared to take part in euthanasia may be that you know us all, but to my left, Mr Rimington, or physician-assisted suicide in any way whatsoever.' Mr Downie, myself Quin tin Gill, Mr Anderson and Mrs Hannan - we are all Members of the House of Keys - and Another doctor wrote: at the far end of the table is Mrs Cullen, who is one of the Clerks to the Committee. ‘At the present time, I cannot foresee any circumstances when I would If I could just remind myself as much as anybody that we be reconciled to assisting in terminating life.’ are being recorded for Hansard, so if we have any indication Another stated: from the Hansard officer that he is having difficulty in hearing what we are saying, I will perhaps indicate to us to ‘After nearly 70 years of total interest, experience and practice of speak up or a bit more clearly. Okay? Thank you. medicine, I am certain that 1 totally agree with the BMA views.’ The form that we have adopted throughout this is to invite you to give an introduction, then a question and The Royal College of Physicians remains firmly opposed answer session and then if you would like to conclude with to the legalisation of voluntary euthanasia, as do all national a summary, if that is okay. and international associations of doctors in palliative care and
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Ms D Annetts - Evidence concluded Procedural House of Keys Select Committee on Voluntary Euthanasia - Evidence of Dr B Harris 72 KCE SELECT COMMITTEE, FRIDAY, 21st MAY 2004 Oral Evidence
care of the elderly. The role of doctors has always been to cure situation of which we can all be proud. Seventy-four per and care, but never to intentionally kill their patients. The cent of doctors on the Island see no need for a change in the legalisation of voluntary euthanasia would fundamentally law on euthanasia. Seventy per cent have not been asked to change the role of the doctor and the relationship of trust provide euthanasia even once in the last five years of their between the doctor and the patient practice. Eighteen per cent of doctors report being asked for You need to be aware that the passage of this Bill will euthanasia on one or two occasions in the last five years, 4 change the face of medicine and a doctor’s duty to care. It per cent report being asked three to five times, 7 per cent is a serious and disturbing development in the authority of being asked six to 10 times and one doctor reports being medicine, and changes active killing as a fundamental harm asked more than 10 times. One doctor wrote: to a potential benefit in clinical codes of conduct The greatest fear with this proposed legislation, according 'I feel that the arguments for euthanasia have become outdated since to Manx doctors, is that, while lawmakers may believe the introduction and growth of a superb hospice movement, especially they are simply giving people a choice to die, in practice here in the isle o f Man.’ they may be establishing a duty to die. They may, in fact, Another doctor wrote: cause increased suffering to the very group they are trying to help, by actually making them feel selfish to live out ‘We already have facilities to ensure death with dignity in the their natural life. I work almost exclusively with people community, hospital and Hospice.' who have a serious and progressive physical illness. Many of them are acutely aware that they need care and support Another wrote: from their family, friends and health carers. They know that those they love have to make adjustments in their own lives ‘The hospice service allows death with dignity.’ to fit around the illness, and they feel guilty. Most have had to give up their own jobs and can no longer help others as Patients with terminal and serious progressive and they did before. physical illness often have at their fingertips large quantities Not surprisingly, they feel they are a burden on those of prescribed medication. If there was such a desire on their around them. No amount of protestations to the contrary will part to end their life at the time of their choosing, one might entirely remove this feeling. It would be cruel for a society have expected at least some of them to have tried to commit to further saddle these vulnerable people with pressure to opt suicide by taking an overdose of their prescribed medication. for euthanasia, not because they want it for themselves, but In reality, I do not know of even one case where this has simply to relieve the burden on others. A GP wrote: happened on the Isle of Man in the last 10 years. No doubt lawmakers would establish a comprehensive ‘I am concerned that some very ill people may feel under some assessment process to decide which patients would be obligation to their relatives and carers to seek euthanasia in a way to allowed euthanasia. However, any medical phrase such as ease their responsibilities.’ *a terminal or a serious and progressive physical illness1 will Unless you can confidently predict that overall suffering always be open to interpretation. In response to this issue, 67 in this group will be reduced, then changing the law cannot per cent of doctors agreed or strongly agreed that it would be justified. be difficult to decide which conditions met this criteria and The people of the Isle of Man have generously supported which did not the development of palliative care services to the point Over time, agreement for voluntary euthanasia for where they are as good as, if not better than, you would find advanced cancers runs the risk of becoming agreement for less severe clinical situations such as early cancers, multiple ^ anywhere in the British Isles. A comprehensive service exists sclerosis, Parkinson’s disease, dementia, rheumatoid arthritis, that works harmoniously with the hospitals and the primary emphysema, mental debility and possibly, eventually, just healthcare teams. Patients are referred early in their diseases, old age. This could be legislation that will ultimately permit often shortly after diagnosis. Over 95 per cent of patients actions different from its original purpose. with serious cancers are referred to palliative care services. A doctor commented: There are no waiting lists for any palliative care service, and it is entirely free at the point of delivery. ‘The trouble is that many people have an interest in the demise of old Palliative care improves the quality of life of patients and difficult patients, including the state. In practice, legislation of this and families who face life-threatening illness by providing kind would open the way to large-scale elimination of inconvenient pain and symptom relief, spiritual and psychosocial support, human beings.’ from diagnosis to the end of life and bereavement Palliative care respects, affirms and empowers people with serious Another doctor wrote: medical conditions. What palliative care says to people is: ‘Okay, you have got this condition. There is a whole range ‘Pressure would lead this to be open to abuse and extension of what is terminal and serious progressive and physical illness.’ of services available to help you, should you need them. You may or may not get troublesome symptoms in the future. At Another wrote: times the going may be hard, but whatever happens we will be there with you. You will get through it We will help you ‘No matter how carefully constructed or worded, any legislation and your family cope and achieve what it is you want to do introduced and enacted would be open to abuse.’ with the time that remains and allow you to live your life to the full, right up until the moment when your life naturally A minority of doctors expressed support for the comes to an end.’ legalisation of voluntary euthanasia, although only 17 per This is what currently happens on the Isle of Man, a cent saw a need for a change in the legislation. Comments
House of Keys Select Committee on Voluntary Euthanasia - Evidence of DrB Harris Oral Evidence SELECT COMMITTEE, FRIDAY, 21st MAY 2004 73 KCE expressed included: euthanasia in 1995, it was subsequently overturned by the federal government in 1997. France and Germany remain ‘My personal view would be that euthanasia should be allowed under strongly opposed to euthanasia, possibly in reaction to the strict guidelines.’ slippeiy-slope phenomenon brutally demonstrated under the Na2i regime of the 1930s, which started with the forcible Another said: sterilisation of those with hereditary disease, moved on to the killing of those with severe handicaps and ended with the ‘After 65 years, I have seen so many patients plead to be helped to end the misery I would act by the will of the majority.’ state-sponsored killing of Jews, the elderly and vagrants. In Holland in 1995, according to the report by the Another said: Remmelink Commission, there were 3,200 reported deaths by voluntary euthanasia from 9,700 requests. Nine hundred 'I would support physician-assisted suicide after there had been full of these deaths were not requested by the person who discussion and counselling and two medical opinions. I strongly believe was subsequently killed. These numbers may indeed be in the dignity of death.’ an underestimate, since not all cases are reported. With a population of 14.5 million in Holland, this is a rate of one Advocates of voluntary euthanasia believe that the death per 4,500. If the Isle of Man had similar levels of individual’s right to choose takes precedence over other uptake, there would be 16 euthanasia deaths per year on the considerations, but choices are not made in a vacuum. Isle of Man, of which four would not have been requested Freedom to choose is always balanced by responsibilities, by the person being killed. A doctor wrote: because our choices and decisions have an effect on other people. Should the wishes of a few undermine the security ‘I have never been asked by a patient to assist their suicide. I have been of many? asked several times by relatives to accelerate death o f patients whom Much is made of choosing to die as an alternative to they considered to be beyond help.’ suffering intractable pain and indignity in the final stages of life, but there is no certainty that people with terminal and Several reports from Holland in the 1990s have shown serious progressive and physical illness will get intractable the problems that can occur with the practice of euthanasia. pain or indignity before death. Indeed, on the Isle of Man, Most euthanasia is carried out by GPs working in isolation it is unlikely that they will experience either. A person’s with no access to palliative care. Some patients are clinically last days can be their most fruitful, a time of acceptance, depressed at the time of euthanasia. Some are simply terrified serenity and meaningful conversation with loved ones. One for their future. Countries like Holland, where euthanasia doctor wrote: is practised, have poorly developed palliative care facilities compared with the Isle of Man. Dutch medical schools spent *1 feel that the pro-cuthanasia lobby prey on the fears o f vulnerable more time teaching about techniques of and the process of people who already have a devastating diagnosis and are feeing an unknown future. The implication is that they may have a painful and euthanasia than they did about palliative care, so it is of no undignified death. The reality that I have witnessed and been part of is surprise that doctors would feel more comfortable offering that their symptoms can be alleviated, their fears addressed, and they euthanasia than the relief of symptoms. can then spend precious quality time at the end o f their lives with their The overwhelming majority of the 500 or so research loved ones. Their deaths are dignified already.' papers relating to the effects of euthanasia in Holland, Belgium, Switzerland and Oregon highlight the pitfalls of The MORI poll, the Border TV poll and the postcard legalising euthanasia. Policing proves to be very difficult, campaign may suggest public support for the concept of especially with restrictions in disclosure implied by clinical voluntary euthanasia on the Isle of Man. However, with confidentiality. Although there appears to be abuse of the any poll, how questions are asked is vital. All too often the system, few prosecutions are successful. There have been question asked has been along the lines of *Do you think tens of thousands of premature deaths in these jurisdictions, terminally ill patients with unrelenting pain and suffering but whether the overall suffering in these communities has should be allowed to die at their own request?’ When put in reduced is very unclear. The verdict on voluntary euthanasia this misleading way, it is not surprising that some support it, is at best inconclusive. especially when it is viewed as some kind of abstract concept The vast majority of doctors practising in the Isle of Man involving someone else. If, for instance, the question had oppose the legalisation of voluntary euthanasia. Examples been put as ‘Would you support euthanasia, even if it risked of comments expressed were: placing a duty to die on the most vulnerable?* then a different answer might have been obtained. In addition, surveys like ‘I would prefer to up and leave the Isle o f Man and practise elsewhere these tend to attract a biased sample of responders. Those than to be a party to such legislation.’ who support the status quo tend to be less interested. If you were to suggest a Manx referendum on this issue, the as yet Another doctor wrote: silent majority, after hearing the arguments, may well vote against the legalisation of voluntary euthanasia. ‘1 would find it morally and ethically wrong to end a person’s life Although euthanasia has been effectively legalised by active intervention and would refuse to the extent of ending up in Holland since 1984 and in Belgium since 2002 and in prison.’ physician-assisted suicide has been legal in Switzerland since 2001 and in the US state of Oregon since 1997, both acts Another wrote: remain illegal in the vast majority of the world. All major ‘Euthanasia diminishes the whole community. Legalising it, far from belief systems in the world oppose euthanasia. In Australia, empowering the terminally ill, threatens them and judges their lives where the authorities of the Northern Territory legalised not worth living.’
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Dr B Harris 74 KCE SELECT COMMITTEE, FRIDAY, 21st MAY 2004 Oral Evidence
Eighty-five per cent of working doctors said they would part in something they consider to be - not be prepared to assess patients for euthanasia nor directly provide it themselves, even if it was to become legalised. M r Rimington: Have you seen any desire of any party A doctor wrote: to do that? (Dr Harris: No.) No? Thank you. You mentioned the Remmelink report which has been ‘This is a social and political issue, not a medical one. Those who seek mentioned by virtually everybody we have spoken to and to mcdicalise it do so in an attempt to sanitise it* many of those who have written in, and it has been used to substantiate their views - The arguments for voluntary euthanasia, in the view of most doctors of the Isle of Man, are far outweighed by Dr Harris: For both sides of the argument arguments against. Most doctors believe that euthanasia is ethically wrong. If it were to be legalised, that would M r Rimington: - for many sides of the argument So, not change its ethical status for most doctors. Voluntary we might accept that it is hard for us to say, ‘Ah, here is euthanasia is contrary to the fundamental, practices of an interpretation, and this is hard and fast.’ If I can put the medicine, and Manx doctors, on the whole, want no part point of view to you that of the number of deaths that were of it highlighted in the two Remmelink reports in the earlier Thank you. mid-1990s, the number of deaths that were described as involuntary, i.e. the patient had not requested it actually The Chairman: Could I just ask a couple of points on compared favourably as a percentage to those countries that that, Dr Harris? First of all, would you be in a position to did not have the at that point established practice of voluntary allow the Committee to have details of the survey that you euthanasia, noting that at that time it was not in law, it was presented? (Dr Harris: Yes.) The full details arid all the accepted that it could take place under case law, wasn’t it? responses, not just examples? Dr Harris: So, it had not got worse, you mean, since Dr Harris: That would be fine. I always intended to write the legislation? it up to circulate back to the members of the Society, so if I gave you a copy of that, that would be fine. M r Rimington: Voluntary euthanasia was allowed, as I understand it in the Netherlands on the basis of case law The Chairman: Thank you. and precedence and legal interpretation rather than under Before I turn to my colleagues, can I ask you: is the legislation as such, until recently. (Dr Harris: Yes.) And the presentation you have just read to us solely your own argument that has been put forward - and statistically - is that interpretation or have you agreed that with any of your the involuntary deaths highlighted in the Remmelink report, colleagues? as a percentage, were smaller in number than countries where similar reports had taken place which did not allow Dr Harris: No. That is my representation to you. voluntary euthanasia, the argument being that having some form of legal control, admittedly under case law, allowing The Chairman: Right So, the examples that you have euthanasia to take place actually reduced the number of cited are ones that you have felt would be helpful? involuntary deaths compared to countries where it was not allowed at all. Dr Harris: Yes, to illustrate the points. Dr Harris: But surely if there was one, that would be The Chairman: Yes, okay. I will turn to my colleagues. one too many? (Mr Rimington: Agreed.) I am not aware Mr Rimington. of one on the Isle of Man at the moment
. MrRimington: Thank you. Yes. In the presentation you M r Rimington: No. But then there has not been that gave, with regard to the 25 per cent of doctors who were same survey. not opposed to the concept do you think you gave them representation in your address? Dr Harris: It might not be better than other places, but is it a position we want to aspire to? Dr Harris: Yes, I think I did. You need to be aware that, for instance, the BMA, which is the collective voice of M r Rimington: No, but we are a very small population, British doctors, has a clear view. As I pointed out, the other so it would be difficult to do a representative survey. But can national and international associations agree with that The you comment on that apparent finding, that the involuntary vast majority of Manx doctors agree with those views, so I deaths were actually less in the Netherlands? feel justified in the statement that I have given. Dr Harris: I think I just have, haven’t I? Mr Rimington: Right, okay. The interpretation of balance there may be... You said that if legislation did come Mr Rimington: Would it not support the argument that in here or elsewhere that as with other legislation in relation it is good to have fewer voluntary deaths and that they take to abortion, there would be no compulsion whatsoever on place anyhow and, in fact, if you have legislation, then there any medical practitioner or nurse in law. are less of those deaths, because you have a more controlled environment? Dr Harris: I think that would be good practice, wouldn’t it? It would be very difficult for you to force doctors to take Dr Harris: I can see the point you are trying to make,
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Dr B Harris Oral Evidence SELECT COMMITTEE, FRIDAY, 21st MAY 2004 75 KCE although since we currently have none on the Isle of Man, something that you have read, that must be the case. I think I would take small comfort from the point you are trying to hospices vary a lot around the world. I am not sure that in make, really. Oregon they have quite the same set-up as we do on the Isle of Man. I would not like to comment on quite how their Mr Rimington: Can I suggest to you first of all hospice services work. - you mentioned the last days: would it not be possible I think one point to reiterate here - I think it is very for somebody who had decided to go down that particular important - is that even around the UK, which was the first to pathway of voluntary euthanasia to achieve the same serenity develop hospice services and whose are the most developed, and come to terms with the family in their last stage of life, there really is nowhere else where such a high percentage in a controlled circumstance, when possibly in the last days of their patients with these diseases access palliative care of some people’s lives they do not have that opportunity, services. We really are unique in that because of the way whether it is pain relief or whatever they are suffering from the Hospice has developed and it has been very well funded that denies them that opportunity? by the community. We are in a very fortunate position. It does mean that you can say that all patients have access to Dr Harris: Yes. I do take that point All one could say those services. is that they would not be their real last days; they would be contrived last days. But there is no reason why effective M r Rimington: Would that not then imply that as communication could not take place in the lead-up to such we have such good services...? And I think we would all an event. like to support those good services. I do not think there is any - certainly, from my own personal point of view Mr Rimington: You gave us the comparison - which we - contradiction between the two. Is there any reason why have had before - with Nazi Germany. Do you think that is those.that I would think would be very few people who might a fair comparison to make for the Isle of Man? wish to go down that particular pathway would not enhance the hospice service and not stand in contradiction to it? Dr Harris: It may be why the Germans feel as they do about the issue. It just illustrates a slippery slope at work, Dr Harris: I think there is always a danger, though, that doesn’t it? I would absolutely hate to think that it might the wishes of a few may have a negative effect on the whole happen here. community. That would be the concern, really. If you imply that if a few people had euthanasia, there would be fewer M r Rimington: The Germans, I think we would agree, at patients to look after and therefore the services would be that time were on a very wide slippery slope in many, many better, if that is the point you were making, it is - areas of their activities. Would that be a fair comment? M r Rimington: No. The numbers are so small that Dr Harris: If the brutality of it has offended you, I financial resources or resources are not an issue. apologise, Mr Rimington. Dr Harris: No. Hospice services would continue M r Rimington: You have used the term ‘vulnerable’ on regardless of what happens in legislation, because clearly many occasions, and, again, if I could say that those who - and I am sure you would all agree - we would want to be oppose the concept of change in the legislation invariably in a position to actually offer that choice. We would never use this term ‘vulnerable*. You put a slightly different twist want euthanasia to become almost a Hobson’s choice for on it this time, because not only if the legislation was in people, where that was the only choice they had. place could it potentially affect the vulnerable, but you have now stated that the proponents of voluntary euthanasia are M r Rimington: Yes. I could ask a lot more. My preying on the vulnerable. How can they be preying on the colleague... vulnerable? Dr Harris: Thank you. Dr Harris: I think that what they are preying on are the fears of a vulnerable group. Sometimes it is the assumption Mr Downie: Right Dr Harris. I wonder if it is possible that terrible things might happen to patients when, in fact, for you to give us an idea of how many patients are annually those terrible things might not happen, and so it is the fear treated in Hospice, and also just explain the role and about of the unknown. Folk who are not particularly involved how many patients are treated by the Macmillan nurses. in it have their own fears of what illness might be like, as lay people, so it is the fear side of it, really, that is the Dr Harris: Yes. We get referred to us at Hospice each concern. year about 250 patients. Of those, probably 150 would have a great deal of input from the Macmillan nurses. Mr Rimington: A lot of reference has been made to Oregon, where the legislation is in place and there is an active Mr Downie: So, in an average week in the Isle of Man, and quite good hospice movement as well. I understand that you would have about how many people in your charge, physician-assisted suicide is a part o f-b u t having said that with what you have got in Hospice and what is out in the a very minor part of - the care and end-of-life choices that community with Macmillan nurses? take place within the hospice movement in Oregon, and there appears to be no conflict Do you agree with that? Dr Harris: The Hospice unit can take a maximum of 10 patients, but our caseload - that is the number of people Dr Harris: I am not sure. I am sure that if that is that we are involved with - is currently running at towards
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Dr B Harris 76KCE SELECT COMMITTEE, FRIDAY, 21st MAY 2004 Oral Evidence
350. Numerically, most of the work is being done outside Dr Harris: Well, certainly from the survey, the majority the building. did not express opinions in that direction, although a minority did. You used the word ‘kept’ in a state of unconsciousness. M r Downier So, as we speak, it would be fair to say Certainly, some patients are in a state of unconsciousness there is an average of 300 to 350 people receiving attention for the period before they die. That happens sometimes, by your organisation? but it is not that they are being kept in that state. They are unconscious because they are very weak; their brain is not Dr Harris: Yes, that is true. working effectively well enough to actually keep them conscious. M r Downie: Right, okay. Given that there has been an improvement in palliative care in recent years, is there M r Downie: So, it is not the medication that brings it anything you feel that you cannot deal with in your bid to about, then? prevent suffering? Dr Harris: No. In some cases, we have patients who Dr Harris: One area that we are trying to develop into have no medication given to them and yet are unconscious is the care of children. We sometimes have to make use of because they are very weak, and they might die the next day. facilities off the Island. With certain things, it is not practical It is the underlying condition that is progressing. to provide them on the Island, so people have to be flown across to Liverpool for various things. Mr Downie: We have also heard that in America, for instance, as part of their hospice programmes in Oregon, M r Downie: So that is to a specialist children’s hospice, they offer a facility now where, for a patient who has perhaps then, is it? undergone some particular severe illness and has been a patient in the hospice for a while, there is an option there for Dr Harris: Yes, but adults, for instance, have to go over them to opt out and go for a euthanasia-type approach. I take to Clatterbridge for radiotherapy and certain other treatments. it that as we have not had an opportunity to speak to anyone We cannot provide those on the Isle of Man. else from the Hospice organisation on the Island, that would be a total no-no as far as you are concerned? Mr Downie: Right If a child, for instance, was diagnosed with a terminal illness and it was obvious that there was not Dr Harris: Certainly from my position as a doctor, there much hope, that child would probably stay in the Isle of Man, have been recent surveys of palliative care doctors and there is a unanimous opposition to involvement in euthanasia. And would it, or would it go away? I understand that palliative care nurses feel just as strongly about it. You will have to ask Mr Quinn, our Chairman. Dr Harris: Yes, the child would stay in the Isle of Man, and care would be provided in the home as much as possible Mr Downie: Right okay. Thank you. We will ask him and, of course', in the excellent children’s ward. But we do not at the appropriate time. currently have a facility for in-patient hospice for children. Mr Anderson: Dr Harris, this morning we have heard M r Downie: You can answer this question if you want from somebody that had worked in the NHS nearly 20 years but have you ever been involved in a case where you felt that ago about the concern that person had had with the pain relief the patient could have perhaps benefited from being allowed of terminally ill patients and how this obviously flavoured to be put out of their misery? that person’s opinion on this subject Can you tell us how pain relief to the terminally ill has developed over the 10 Dr Harris: No, I have never felt that. As the doctor years that you have been working in the Hospice and what mentioned here, sometimes relatives have said, ‘Wouldn’t percentage of patients cannot get relief from pain as a result it be kinder?* or ‘Isn't there anything that could speed up of the treatment that you give? the process?* but I am always at pains to point out that we allow nature to take its course and any medication we give Dr Harris: Yes, thank you. is simply to allow that person a peaceful and dignified end, Skills in managing pain have developed an awful lot, an end free of pain and free of breathlessness. really, in the past 10 or 20 years, I suppose. There have been a number of reasons for that. One of the biggest reasons, Mr Downie: Yes. I do not know if you are aware of really, is that the drug companies have actually come up with the Diane Pretty case in the UK. It did have a lot of media a whole variety of products which can be used in different coverage. (Dr Harris: Yes.) There were also issues before circumstances. So, whereas perhaps 20 years ago there would the courts and... It has become obvious that during the last only be one medication that could be given in a certain way, week of her life, because of her problems with motor neurone now our management plans for pain control are very much disease - it was affecting her throat and her respiratory organs tailored to the individual patient, depending on their special - she had to be kept in a state of unconsciousness for a week circumstances. prior to her passing away. A difficult question, perhaps, Of course, I would not like you to get the impression that for you to answer again, but under some circumstances do pain relief is just about medication. The perception of pain by you think perhaps some of your colleagues, if perhaps not the patient has holistic attributes, so there are physical issues yourself, may feel there would be justification in certain very in that but there are also psychological issues, social issues difficult cases like that and it would be possible to bring her and indeed spiritual issues, and the holistic practitioner, life to an end quite quickly? working with their team, would attempt to address each of
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Dr B Harris Oral Evidence SELECT COMMITTEE, FRIDAY, 21st MAY 2004 77 KCE those areas. There are also non-drug interventions such as, some harm. So, in giving painkillers, you would clearly be for instance, aromatherapy, which we do an awful lot of at intending to do good and to relieve pain, so the small risk the Hospice. It plays a big part in making people comfortable. of side-effects would be acceptable in that But there are other things like the use of acupuncture or That is a principle that is used, really, in all healthcare. If TENS machines, so there is a whole variety. With some of you go and have an operation, you are having it to do good, our more challenging patients, we have to ask for help from but there is a small risk of a serious adverse effect where you the anaesthetic department at the hospital. Dr Wilkinson is might be left worse off. But the practitioner would not be very enthusiastic and can offer certain things like epidural accused of acting in an illegal way under that principle. analgesia or spinal analgesia, which can really help us in difficult cases. Mr Anderson: Right, thank you. So, then, you cannot What I say to patients now is that pain is not really the give us an example of a doctor whose first intention was biggest problem any more, because it is one of the symptoms to relieve suffering and who thereby shortened the life of that we can deal with really quite well. There are, in fact, a patient and who got into trouble as a consequence? You more difficult symptoms to deal with than pain; for instance, have not got an experience of that? breathlessness would be one. But although people fear pain - that is what we fear most - in reality that is one symptom Dr Harris: I suppose where doctors can get into trouble that we can get on top of, even if it means, in the most is if they do not record what they are doing and why they difficult cases, that there is a certain amount of sedation that are doing it at the time. They can sometimes be questioned goes along with it about why they did something, and unless they can provide So, I can honestly say to you that we can offer an awful lot evidence of why they did something and what its intention of pain control to every person. We can relieve people’s pain was, then that could land them in difficulties, I suppose. in nearly every case, in one way or another. In many people, they are pain controlled and still perfectly alert to continue M r Anderson: Okay, thanks. That is all from me at the their lives. In the small minority that might be seen as the moment, Mr Chairman. more difficult cases, then there may be some sedation or the need to have things like epidurals, where perhaps mobility The Chairman: Mrs Hannan. is then limited, but they are actually pain free. Mrs Hannan: Thank you. Mr Anderson: So, virtually, you could say, in nearly 100 Could I just ask about consent? Does a patient entering per cent of cases you can control the pain? Hospice give consent?
Dr Harris: We can do an awful lot for pain in 100 per Dr Harris: Consent for what? cent of cases. Mrs Hannan: For treatment. M r Anderson: If legislation was to be changed on the Island, what impact do you think that would have on Dr Harris: There is an implied consent for any patient recruitment of nurses and medics to the Island when the other going to see a doctor, the same as if somebody was going countries round about us have different legislation? to see their GR They are giving an implied consent to be Dr Harris: It may well become an issue. Certainly one listened to and to possibly be examined and for the doctor doctor, as I have quoted, has said that they would up and to suggest certain treatments. So, we operate under that leave the Isle of Man if it became legalised. I suppose it primary premise. would be one of those things; it would almost be the first Of course, all the people that we see at the Hospice have thing that was said whenever you said, *1 am thinking of been referred by their GP or hospital consultant, and that is working in the Isle of Man.' Somebody would say, ‘Oh, you a form of consent, in that the GP would often say, ‘I would will be doing euthanasia when you get there* and I suppose, like to refer you for hospice services’ and presumably they for some people, they will take fright at that really. say, 'Is that okay with you?’ or ‘I think it is in your interests’ So, I think it could be an issue. It is nice that the Isle of and they agree to it Man is viewed for other more positive things at the moment We hear of patients who say, ‘No. I would rather not If that were to be its main claim to fame, that would be a be referred at the moment’, so they are clearly not giving great shame, I feel, as somebody who has lived here and consent, and so we, perhaps, only find out about them a enjoyed living here in the last 10 years. little bit later on.
M r Anderson: Thank you. Mrs Hannan: So, there is no written consent? Under the present law that we have, is it possible to give treatment that might shorten the life of a patient by giving Dr Harris: When you say ‘consent’, consent relates to them that treatment without the doctor getting involved individual activities, so written consent for what? and getting into trouble by doing so? Under the current legislation, doctors do not get prosecuted for that, do they? Mrs Hannan: For treatment in Hospice.
Dr Harris: No. There is this principle - 1 dare say you Dr Harris: There is no written consent for treatment have heard it talked about - of ‘double effect’, and in essence However, just for instance, if a patient at the Hospice was that gives protection from prosecution of any intervention transferred to Noble’s for an operation, there would then be that is given with the intention of doing good but risks doing a formal consent signed.
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Dr B Harris 78KCE SELECT COMMITTEE, FRIDAY, 21st MAY 2004 Oral Evidence
Mrs Hannan: Right. So, if a patient actually requested which they deal with, which they consider... The courts and gave written consent that they wanted to die, you would have made this decision. be opposed to that in relation to consent? We had this morning the case put to us of the Manchester conjoined twins. The court actually accepted that, by Dr Harris: Consent is based on an offer by a health operating, one would die. That was obviously against the carer to provide a certain type of intervention. What you are wishes of the parents, but they would both die otherwise, suggesting is the patient almost demanding a certain kind and so this was the tacit position of the courts accepting of treatment that is not on offer. To follow your argument, these sorts of issues. the patient might come in and say, 'I demand to have a heart transplant’ If that is something we cannot provide - Dr Harris: Yes, that is how they are interpreting current legislation, isn’t it? Mrs Hannan: I am looking at it from the point of view of trying to examine this particular issue not as it is now but Mrs Hannan: Yes, in that particular instance. in regard to consent, a patient going into Hospice consenting to something which is going to shorten their life expectancy Dr Harris: Yes. Obviously that gentleman is suggesting or wishes, obviously because of their illness. But if it is their a review of the legislation, and that is what you are doing, persistent request then surely there is a problem here about isn’t it? consent and the autonomy of the person. Mrs Hannan: Yes. Thank you. You mentioned the Dr Harris: The Hospice fundamentally believes in the Hippocratic oath. Have you actually taken the Hippocratic autonomy of the person. That is what we seek to affirm and oath? empower. We take pride, really, in the fact that we discuss all the management issues with the patient I might well say Dr Harris: I have not, actually, no. It stopped being used to somebody, ‘There is this treatment or this treatment With in British medical schools about 30 years ago now. We now the different implications of each, which would you prefer?* use a passage from the Declaration of Geneva, but it was so there is consent for the things that are done to patients. simply to set the historical context in medical care. There may not be a written consent form where somebody sighs along the dotted line in every case, but I think consent Mrs Hannan: You mentioned, too, the change of dealing is much more than simply a form. It is a process, isn’t it? And with pain over the years. Surely that has also changed over we strongly believe that. A fundamental principle of medical time, because you mentioned not giving a fatal draught. ethics is that consent should be obtained before treatment Surely, in some instances, both nurses and doctors sometimes and it should be an informed consent. give that fatal draught
Mrs Hannan: Recently there was an article in the British Dr Harris: No, I do not accept that point Sometimes Medical Journal: ‘Assisted Suicide’. It is written by Richard patients might be quite poorly and are perhaps exhibiting Huxtable, lecturer in medical law and ethics, and he starts some discomfort and medication is about to be given and the off by saying: patient then dies before it is given. If that had been given a ‘The existing law on assisted suicide is contradictory, confused and couple of minutes earlier, you might say then, ‘Oh, well, that opaque. We need to take a fresh look at this issue and perhaps preserve was clearly a fatal draught’ It was just coincidence. the essence of the compromise that the courts tacitly favour/ Mrs Hannan: But surely this is the double effect that Do you feel that the British Medical Association and you were talking about? those sorts of organisations that you were talking about have actually studied this situation which he refers to as the courts Dr Harris: Well, it is, but it does... I think when they tacitly favouring? talked about a ‘fatal draught’ back in Hippocrates' time, surely the point he is saying there is that doctors should Dr Harris: I am sure they have. When he says ‘the not use their skills and knowledge to harm others. Being courts tacitly favour’, he is saying that the courts tend not a doctor gives you special responsibilities to act wisely to prosecute doctors who may have crossed lines. He is and use the tools that you have wisely, and so Hippocrates actually saying that perhaps the laws are being too lenient, was setting down his view on what common standards all isn’t he, with doctors? doctors should have, and obviously that oath was used for over 2,000 years. Mrs Hannan: No. He was mainly talking about issues before the courts, obviously. He was talking about Mr and Mrs Johnson, who were convicted of assisting the suicide Mrs Hannan: You mentioned the questions asked at of their daughter who had motor neurone disease because the MORI poll and the postcards. How were your questions they did not do anything to stop her taking tablets and, when posed to your fellow members? she did, they did not obviously call for help or anything like that, so... Dr Harris: Clearly, you will see that when we give you the report - Dr Harris: But they were not ultimately found guilty, were they? Mrs Hannan: But you were critical of the MORI poll and the postcard poll, so I think it is quite right that we Mrs Hannan: Yes, they were, and other issues, too, should know what -
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Dr B Harris Oral Evidence SELECT COMMITTEE, FRIDAY, 21st MAY 2004 79 KCE
Dr Harris: In principle, they were single-line statements The Chairman: That were unrequested. and doctors indicated that they strongly agreed with that, that they agreed, that there was no view, disagreed or strongly Dr Harris: No, I did not say that. I said that there disagreed. have been tens of thousands of premature deaths in these jurisdictions, but whether the overall suffering in those Mrs Hannan: What was the question? communities has reduced is very unclear, and the point about unrequested deaths was that, in the 1995 publication Dr Harris: There was a whole variety of questions, about by Remmelink, of the 3,200 deaths that year by euthanasia, eight or nine questions. One of the questions stated the BMA 900 of those were non-voluntary or not requested by the view, which I have given to you today, and it simply said, person who was subsequently killed, presumably requested ‘I agree with the BMA view’ either strongly agree, agree or by somebody else, a relative presumably. whatever. Others said, ‘How many requests for euthanasia have you received in the last five years of practice?’ and The Chairman: So, with the checks and balances... If obviously that was the response. 'Do you think it would be we think of that 900 then, you are saying there have been easy, in practice, to decide who had progressive and serious 900 premature deaths in Holland. conditions and who did not?’ and things along those lines. One question said, ‘If it were to be legalised, would you be Dr Harris: In that year. prepared to provide it yourself?’ ‘If it were to be legalised, would you be prepared to assess patients for it?’ ‘Would you The Chairman: In that period. How many prosecutions be prepared to refer people to another doctor who would would you reasonably expect to have followed that alarming assess or provide it?’ So, there were a number of questions, incidence of premature death? really to get a flavour of their views, because I could have just come here and said, ‘The BMA thinks this and, therefore... * Dr Harris: I know, in fact, that there has only been about but you might have said, ‘Well, what do real Manx doctors one prosecution in Holland, hasn’t there? The difficulty is feel about it?’ so it was thoroughly important to find out the policing of it You may say some of those reflect abuse. their views. I think in their legislation there is some way in which it can be a non-voluntary case. There can be requests by others. Mr Downie: Could I just ask: is a copy of that survey So, they are not all illegal, those. I think their legislation available for the Committee? allows the request to be made on occasions by somebody else apart from the person. Dr Harris: Yes. It will come to you. Mr Rimington: The legislation did not exist in - Mr Downie: Right. Thank you. Dr Harris: No, the case law and the tolerance by the Mrs Hannan: Have you seen the House of'Lords Bill courts, I should say. It is one thing to say at this stage, ‘Oh, that is being discussed by a select committee of that place we are going to police this really carefully and we are going in the UK? to make sure there are no abuses’ but in reality how can you do that? If it was so easy to police law, then why would we Dr Harris: You mean the Joffe Bill? I have seen certain have any crime? transcripts relating to it It is a very similar Bill, isn’t it? The Chairman: Well, it is quite clearly not that simple. Mrs Hannan: It relates to four doctors being party to the We have crime because we live in a human society, and we actual decision of the patient to ensure that it is a persistent have a police force to try to deter it. request. Do you think that is reasonable? Mrs Hannan: And we have lawmakers. Dr Harris: I would not feel that any legalisation was reasonable. Quite how it is dressed up is... You may have The Chairman: And we have lawmakers, yes, to assist a difficulty on the Isle of Man, in the sense that there are in that process. Can I ask you, then: if 85 per cent of those only a certain number of working doctors, particularly if a who responded - which is, I think, 58 per cent of your good number opt out, which is what they appear... That is membership - what they are saying at the moment. So, it may be difficult to actually find four doctors. It would be doctors who are Dr Harris: Fifty-seven per cent in total responded. not already involved in the patient’s case, I presume. Would it be? I do not quite know, but that might be a practical The Chairman: Thank you. Eighty-five per cent of those difficulty over here. would not engage - 1 think that is the figure I noted - so does that follow therefore that 15 per cent would? Mrs Hannan: That is all I have got for the moment, thanks. Dr Harris: There may have been some that gave no view to that question, but there would be some who, yes, said that The Chairman: Dr Harris, could I ask: you have talked they would engage. about tens of thousands of incidents of unrequested death. The Chairman: Okay. Thank you. You have talked Dr Harris: I said tens of thousands of premature about the welcome improvements in pain management deaths. and palliative care generally and the excellent work of the
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Dr B Harris 80 KCE SELECT COMMITTEE, FRIDAY, 21st MAY 2004 Oral Evidence
Hospice in particular on the Island. Nonetheless, is it not Dr Harris: I am not sure they would use that expression. the case that people still die in pain or distress? (Dr Harris: Maybe Adolf Hitler was not... Maybe when he started off he No.) That is never the case? was not quite the same as the man he was in the 1940s. It is a slippery slope, isn’t it? That is the thing. You find yourself Dr Harris: It is a misrepresentation to say that people sliding down it and you then cannot turn back. die in pain and distress. All I can say is that the people that I see dying I do not allow to die in pain and distress. M r Rimington: The point 1 was trying to make was that the fascism in Nazi Germany was not led down the slippery The Chairman: I am not suggesting for a moment slope by laws on euthanasia. It did not become an aggressive, that anyone would deliberately or recklessly allow that to militaristic, ethnic-cleansing regime because of its laws on happen. euthanasia. Would you agree with that?
Dr Harris: No. It would be a failure of medical care if D r H arris: But what was consistent with the Nazi somebody was dying in pain and distress. mindset was the systematic elimination of those whom they did not consider to be - (Mr Rimington: Pure.) Yes. And The Chairman: But despite your best efforts, in every it can be a mindset can't it, and that is the danger, isn’t it, case - just to be clear - that failure, as you describe it, is not that that becomes almost acceptable that these people die a reflection of lack of attention or of effort or application; it because really their life is not worth living? is a just a reflection of the fact of life that some people die in pain and distress. The Chairman: Okay. Can I just pick up on that and just so there is no uncertainty and no mixed messages go Dr Harris: I think it is a misrepresentation, really. I out to the community on the Isle of Man? What would be would not like to agree to that point I do not think it really your estimation as to your membership if you asked the helps the debate if it is going to be used as some kind of a question, 4 Do you think the House of Keys has Nazis, Nazi justification for introducing this legislation. tendencies?’
The Chairman: Okay. The reason I ask you that and look Dr Harris: I think that is a very unfair question. for some clarity in that... I can understand that you do not want to be drawn on that, and I respect that but you have The Chairman: I would prepare, if you still feel... you put it to us that we do not need this legislation because pain flagged that up - management deals, in all cases, quite satisfactorily. So, I am just reflecting an assertion you have put Dr Harris; No, in some ways, I regret now putting it in, because it has obviously upset the pair of you. Dr Harris: It is palliative care services. There is more than just pain. Yes, what I am saying, really, is that it is Mrs Hannan: No, I think you have upset me, too. not needed, that that is what doctors on the whole feel and nurses feel. Dr Harris: Oh, sorry. It is simply to illustrate the point that you could start something off in a completely well- The Chairman: Yes. We seem to have as many different meaning way, but you do not really know where it is going figures that reflect opinions for or against as we do surveys, to end up. so... That is the only point I was trying to make, apart from just reflecting that, in Germany, ¿hey are very opposed to Dr Harris: Okay, but if I am able to have conveyed one euthanasia, whereas their near neighbours in Europe clearly thing to you this afternoon, Manx doctors on the whole do tolerate it, don’t they? not see it as necessary. I know that when Beverley Critchlow The Chairman: Okay. And then could I ask you, just came and talked to you she made it clear that Manx nurses again for clarity: you spoke about one of your colleagues who also felt that way. you said would up and leave the Isle of Man if legislation is introduced. Did I misunderstand? Did he not say, ‘I would The Chairman: Yes. I think that was 4 per cent of her up and leave the Isle of Man if legislation is introduced and membership that chose to respond. I am forced to engage in it’?
Dr Harris: Yes. I had a very good response, 57 per Dr Harris: No. He said: cent 41 would prefer to up and leave the Iste of Man and practise elsewhere The Chairman: Yes, you did. than to be a party to such legislation.*
Dr Harris: But it is different circumstances, really. So he -
The Chairman: Now could I just touch again on the The Chairman: Okay, so a ‘party’ would not mean an issue you introduced, the emotive, of course, issue about active party; that would be even part of the system which Nazi programmes of mass extermination? (Dr Harris: Yes.) would... Would that be your interpretation of that? From your experience and assessment, how many of your membership would say Lord Joffe is a Nazi? Dr Harris: I could not comment. That is the statement.
House of Keys Select Committee on Voluntary Euthanasia - Evidence of DrB Harris Oral Evidence SELECT COMMITTEE, FRIDAY, 21st MAY 2004 81 KCE
Mrs Hannan: Just one point I would like to make: what Dr Harris: Yes. That is what doctors reported on the legislation covers the operation of Hospice? survey.
Dr Harris: Mrs Hannan, I did point out that I am not The Chairman: Okay. So, it is an issue that doctors are really here to represent the Hospice; I am here to represent faced with, albeit on an irregular and occasional basis. Manx doctors. I do work there, but I do - Dr Harris: And certainly for those doctors who have Mrs Hannan: I know, but you brought it up in your been asked, it has been an issue at the time. And the fact that presentation. there has been such a good response to the survey, I suppose, is evidence that doctors are interested in this issue. Dr Harris: I brought up palliative care services in my presentation. The Chairman: Yes. I do not think my colleagues have any further questions, so, Dr Harris, thank you for coming. Mrs Hannan: Palliative care, then: what legislation Before you go, is there anything you would like to conclude covers palliative care? by summarising?
Dr Harris: What legislation covers palliative care? I am Dr Harris: Thank you. really not sure what legislation... You tell me what legislation I would just like to mention that the overall medical view does cover palliative care. is that even if voluntary euthanasia becomes legal, it would still be morally and ethically wrong. As I said, 85 per cent of Mrs Hannan: No, just in relation to the Assisted Dying Manx doctors would not be prepared to be involved in any of the Terminally 111 Bill which is in the House of Lords, way. We are concerned that euthanasia will not, in reality, be not the legislation that we have got before us. But part of a voluntary or free choice, in that vulnerable people will feel that is to make provision for a person suffering from such a an obligation to opt for euthanasia to decrease the burden on relatives and that others may believe.it is best for them and condition to receive pain relief medication, and I wondered would seek to influence them to choose euthanasia. what legislation palliative care operates under. From a doctor’s point of view, euthanasia is a failure of medical care, and it will always be the case that if you have Dr Harris: I am not sure where you are coming from a patient who is suffering, it is better to remove the suffering with that. I did notice in your wording that you put a phrase than to remove the patient in about making provision for pain control; that currently exists, and that is common practice. It may be the first specific Mrs Hannan: Before you go, could I just... You said legislation in the area. 85 per cent; was it not 85 per cent of the 57 per cent that responded? Mr Anderson: Just one final question from me, Dr Harris, as you have had quite a grilling. (Laughter) Has Dr Harris: Yes. anybody who has been known to you and who was apparently fully mentally competent ever expressed the view to you that Mrs Hannan: Thank you. they wished they were dead and then subsequently changed their mind? The Chairman: Thank you, Dr Hanis. Dr Harris: I really cannot say that a patient has asked me really to have them killed, in my time in practice. Mr Kermode was called at 4.08 p.m.
Mr Anderson: Not necessarily asked you to, but Procedural expressed that opinion. The Chairman: If we ask Mr Kermode of Mec Vannin Dr Harris: Sometimes people might say, ‘Oh, I feel if he would kindly come forward and take the stand. I am really lousy this morning. I feel like I would be better off conscious of the clock. Thank you for your forbearance, dead', or something like that, almost as an opening gambit Mr Kermode. You know everybody on the Committee, I in the conversation, and then you have to say, Tell me how think. you are feeling and why you are feeling like that.’ But clearly, from your point of view, you can feel quite Mr Kermode: Yes, I do. strongly about something one day and the next day you feel a bit different about it, and so one would need to have a The Chairman: And you know Mrs Cullen, our Clerk. persistent request. That is what you said, isn’t it? (Mr Kermode: Yes.) Okay, so we will hand to you, if you would like to introduce yourself and your role and your Mr Anderson: Yes. Okay, thank you.' position, Mr Kermode, and then we will do the question and answer again, if we may. The Chairman: That is your experience, but again for clarity I think you said - 1 am sorry about my figures, because I have scribbled them - that there was a percentage of doctors who have been requested once, I think 4 per cent EVIDENCE OF MR M KERMODE two to three times, and one doctor was asked more than 10 times over the last five years. Is that - Mr Kermode: Right I hope all the Committee have seen
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Dr B Harris Procedural House of Keys Select Committee on Voluntary Euthanasia - Evidence of Mr M Kermode 82 KCE SELECT COMMITTEE, FRIDAY, 21st MAY 2004 Oral Evidence the submission that we made, originally. I have not brought through a high quality regime of impartial counselling anything in addition to that and confirmation of desire before any assistance could be I will just give you the background to it When the matter authorised. We debated this fairly much in isolation. Rather arose last year - 1 think it was Mr Rimington that brought than start trawling through masses of information and it before the House - and submissions were requested, we conflicting arguments, we looked at it in a fairly vacuous looked through our policies to see if we had any guidance in environment and took it from first principles. So, having this area to take a position, and we had nothing at all, nothing identified, in principle, that we thought it was conceivable in our policies or previous statements to give us anything that the law be changed, we then established what we thought to go on, and so we called for the membership as a whole would be the main guiding principles. to make input to it over a debate over a period of time. We One of the first things we came out with was that anybody went into it with a totally open view; there was no slant one who was suffering from one of these identified conditions way or the other. would have to have a course of counselling - and we will However, the discussions did, actually, fairly quickly return to this later. narrow down, for practical purposes, mainly, that we would The mechanisms must be in place to ensure that this discuss the area only in the issue of a terminal and debilitating facility would only be available to people normally resident illness, not with a non-terminal illness. And there were in the Isle of Man at the time of diagnosis or having an practical aspects to that established and strong association with the Island prior to So, after several discussions, it was concluded that we diagnosis, i.e. there must be no question of people using the did advocate a change in the law under strictly controlled Isle of Man to circumvent laws in their own country. This circumstances. And so 1 will just go through the submission, was in response to fears expressed within the party, and in which you will already have seen, and expand upon it as I general society, that this could be some sort of death-camp go. island, these sorts of fears. We were veiy firmly of the Currently, the law in the Isle of Man makes it illegal to opinion that if the law were to change, it would be strictly assist a person to commit suicide in any way, including the for those people who were either normally resident here provision of the means to do so. It is also an act of murder when diagnosis occurred or had a strong connection with to administer a painkiller or an anaesthetic in such quantity the Island, had family here or you were bom here but moved that death is the likely result So, doing somebody a favour, away. Again, the exact definition is for later stages. in somebody’s opinion, in saying, ‘There is a large dose. Take Such a facility must only be available through medical that’ is murder, and we are not advocating a change there. establishments that are primarily concerned with the However, we do accept that there are instances when treatment of illness, i.e. there should be no question of certain terminal illnesses can lead to such a profound loss ‘death clinics’. What we are saying there is that you could of quality of life, in terms of pain or loss of faculty, that not open up an establishment purely for the purpose of the sufferer may find death by intervention a preferable assisting suicide; it would have to be done on die back of alternative. Again, in the discussions here, our general existing medical facilities primarily concerned with treating feeling, from observation and personal experience, was that and curing illness. both the nature of the illnesses and the individuals who may No person should be pressured or induced to act against express that view would actually be veiy small indeed. their own personal or professional ethics. The previous Out of any given number of people who were diagnosed witness spent a long time on this, and we certainly do not as terminally ill and fully aware of this, we did not believe want to see anybody acting against what they feel are their that a great number of them would actually express a best interests or their beliefs in this area. If you turn around committed view to end their life by artificial intervention. say, ‘Well, what happens if no doctor would assist or advise?’ However, we did not think that this was a matter for majority you say, ‘That is the way it is.’ We are looking at it from a decision, because we are dealing here with an individual's law point of view. It is up to other people to deal with that choice over one of your most important parts of the life aspect of it. process, which is dying. You only get one shot at it. Having said that, at the end of the day, we did not That is popularly referred to as assisted suicide or believe that such a situation would actually arise. As has euthanasia, and it must be recognised that there are two been confirmed by Dr Harris, there are a substantial body of aspects to this: firstly there is the provision of the means for doctors over here who would, in fact be prepared to support a person to take their own life, and secondly performing an a change in the law, which, by implication, means that they act that will result in a person’s death. Obviously, you could would probably be prepared to take part in these things. be veiy irresponsible in doing either of those things, if you Assisted suicides would only be legal under consenting, were to provide a person with means that would result in qualified and authorised medical supervision using an doing more harm than actually achieving the objectives. You approved method. That obviously is to allow for a very close have not helped them at all. person to actually assist in a suicide, but it must be under So, it is obvious that if there was to be a change in the medical supervision, using an approved method. And the law here, there must be very strict regulations. The only opportunity must be taken to reassert the illegality of taking circumstance under which we can endorse this is where the any action without such high quality processes of expression condition has been diagnosed and confirmed as terminal, with and consent that will end a life prematurely. It is a widely no realistic chance of recovery. The illness must also involve held belief that many patients with terminal illness are given a profound of loss of quality of life in terms of extreme pain such high doses of painkillers that these may well be the or faculty. And we do mention this further on: it is not for cause of death rather than the illness itself. This may well be us, a political party, to identify what those illnesses are or done without the patient’s informed knowledge or consent, what the criteria are. That is for experts. and this must be illegal. We are relying on some personal The victims of such conditions would have to go evidence there. Several people have related to us, over the
House of Keys Select Committee on Voluntary Euthanasia — Evidence of Mr M Kermode Oral Evidence SELECT COMMITTEE, FRIDAY, 21st MAY 2004 83 KCE
course of time, their own experiences, and I have my own possibility of a person who has changed their mind but is experience there as well. If the Committee questions that unable to communicate it being wrongfully killed. statement, I am perfectly willing to back it up. To formally affirm the desire for assisted suicide, the There is no question, and there must be no question, of patient must have undergone as full a course of counselling a change in the law being the first step towards involuntary as they wish. Confirmation of their desire must be given and euthanasia. We have heard the expression ‘slippery slope’. witnessed by both a recognised medical and recognised legal Abortion is possibly an area where there has been a grave professional, and any subsequent reaffirmation should be to concern of that, and there have been moves by some bodies the same degree. Obviously, there is a time factor involved to liberalise the abortion regime. In actual fact, it does not there. Some conditions may be diagnosed fairly early on appear to have happened. The controls are still there, and, and others may have only a matter of weeks, so there is a of course, it is one area where doctors working for the NHS potential to require a reaffirmation if a certain timespan has routinely involve themselves in the taking of a life without lapsed. If the patient asks for assistance to commit the act, the consent of that life. they must give clear indications of the level of debility they Mec Vannin does actually support the law as it stands will undergo before they wish their request to be initiated. in the Isle of Man; I am simply making that as a point. We We believe that it is acceptable for a specified person have consenting adults here with the ability to express an other than a doctor to assist if that person is agreeable, but opinion, so I do not see how... There is a conflict to me when only under strict medical supervision. This person must, doctors accept abortion, but would not accept voluntary however, also undergo a counselling session before consent euthanasia. As stated above, it is widely believed, and even can be given to assist and, if they actually have to carry out tacitly accepted, that this is actually happening now, and that the act, also have counselling available afterwards. Let us not should not be the case. misinterpret what is going on here: no matter how much you Religious arguments against a change in the law are not love a person, to take their life must be very difficult. sustainable. Matters of belief in this area are specific to each If at any point after formal affirmation of desire a patient and every individual. Whilst respecting the rights of religions expresses any form of doubt, this will be a positive debar to instruct and advise their own followers in their respective for any human assistance to actually commit the act This moral ethics and theology, such ethics cannot be reasonably would not prevent the means being available to the patient to imposed upon those who do not adhere to them. No immortal commit the act themselves should they not actually reverse souls can be saved by legislation. Mec Vannin is a secular their decision. So, in other words, if you had said, ‘I wish party and we live in a fairly secular society. Religious groups assisted suicide’ but then say, ‘I am not sure’, that is it You argue within any given theological arguments with each other will not get assistance. You could still have the means to until the end of time, and we do not consider, on matters so commit the act yourself, but you could not have assistance close to the individual, that religious ethics should be used from another person. as a guiding factor in legislation such as this. The stage of illness: assisted suicide should not be Anyone who is diagnosed as having a terminal condition available until the illness reaches a profound stage. These should, as a matter of course, be offered a counselling stages can only be determined by close consultation service. That is not an assisted suicide counselling; it is to with medical experts and will vary according to specific tell them the nature of the disease, what their expectations diseases. are, the nature of treatment et cetera as it progresses. If this At the actual act itself, apart from any persons requested is taken up and the specific condition qualifies for assisted by the patient there must be at least one authorised medical suicide, this counselling would include the information that practitioner - and by that we mean a person who has been assisted suicide is legally available. That is how we believe approved by the DHSS - and one authorised independent the matter should be addressed. Only then would assisted witness - and that person must be authorised by the judiciary. suicide counselling be given, after a request for this has Presuming death is by assisted suicide, the certifying doctor been made by the patients themselves. This has to come will record the cause of death, and the fact that it is an assisted from the patient. It is a prerequisite of the law - and I am suicide must be mentioned in some way. The specifics of the speaking speculatively when I say it is a prerequisite of the wording are a matter for further consultation with legal and law, because it is a prerequisite of the law as we believe it medical experts. The reason for this is that obviously, when should be - that the patient receive a minimum course of an obituary or a notice of death is written, a lot of people counselling at this stage. would not wish it to be publicised that they had actually died If a patient is adamant, after undergoing such counselling, from voluntary euthanasia. But at the same time, it must be that they want an assisted suicide, the law must very clearly recorded that this was actually the fact. explain to them — and obviously we have to have impartial Should an act of assisted suicide take place under this individuals to do this; it would require a trained professional regime, a full file would be passed to the coroner of inquests, - that they are required to specify whether they wish to who will review the evidence to satisfy himself that the be provided with the means alone or the means and/or procedures have been correctly followed. This being the case, assistance. This would mean that there would be no provision there would be no need for an inquest. Only in the event of for subsequent assistance should they be unable to request the coroner not being satisfied that all procedures have been it. What we are saying there is that if a person requested correctly followed would there be need for an inquest that they be given the means to commit suicide of their own It is recognised that current verdicts available may not volition and they passed the point of being able to request be appropriate. In the event of an inquest finding the correct that someone intervene, then that is it and they have lost procedure had not been followed, ‘unlawful killing’ is an their opportunity, because again there must be no question option. Conversely, if procedures have been followed, either whatsoever of that person being killed without their complete ‘lawful killing’ or ‘assisted suicide’ may be options, but and utter desire for that to go ahead. This is to avoid any again this requires consultation with legal experts. We are
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Mr M Kermode 84 KCE SELECT COMMITTEE, FRIDAY, 21st MAY 2004 Oral Evidence not trying to say what it actually should be there. that person’s life. Do you think that is something that also To round off» we believe that this provides a framework could be requested by the patient, by the person, with their within which a meaningful and workable act can be consent? established. It is intended as a set of principles, and the party would welcome the opportunity, as I would now, to make Mr Kermode: That they have pain relief? Yes, further input. certainly.
Mrs Hannan: Thank you. Mrs Hannan: And that they would give consent to that, You said about having safeguards in place, people taking into account that that pain relief treatment or whatever understanding what they are asking for and coming to that could, in actual fact, shorten their life? sort of decision. I think I am right that you said that it would be registered. If you felt that somebody did not want that M r Kermode: Yes. My understanding at the moment is to be, how would you do it? It would have to be a public that although there are certain procedures in hospital which document, surely. require specific consent, if you get taken into hospital and you are in extreme pain, the likelihood is that you will be M r Kermode: Exactly which instance or matter are we administered with a painkiller, routinely, without specific talking about now? consent given. The nature of some of these terminal illnesses, especially some of the cancers, is such that the pain is Mrs Hannan: If you have an assisted death, voluntary progressive. Because of the way the disease is operating, euthanasia, you said that people might not want it advertised the dosages tend to go up. At the same time, the person’s that that is what they - awareness of life... Because the popular one seems to be one of the opium derivatives, diamorphine or something M r Kermode: Oh, yes, at the very end. like that they are literally spaced out and this can be for periods of not hours, but days or even weeks. The effect Mrs Hannan: Yes.- But surely it would have to be a of the drug itself must be shortening their life, otherwise it public document? would be fine to go around taking heroin, and their quality of life is severely undermined by this, because they are just M r Kermode: A death certificate is a public document, not there. They are a living body lying on a bed, but they yes. This is where you would have to go into deeper are not the person. And, as I say, these states can go on for consultation. The cause of death could be... It is entirely a long time. That drug might be controlling the pain, but it dependent on the means. We do not specify means in our is not enhancing their quality of life. submission; that is not for us to say so. But it could be very clinically what caused the death, or it could be recorded that Mrs Hannan: But would you accept that part of it was an assisted suicide. their ability to have treatment is with consent informed Well, cause of death would not be assisted suicide; cause consent? of death would actually be, say, a barbiturate overdose or something like that, but as a result of assisted suicide. That M r Kermode: I do not know if there is any consent probably would be recorded on the death certificate, which regime at the moment We would certainly - is a public document, but -
M rs Hannan: Also along with the condition that they Mrs Hannan: No, I am talking about in the future. were suffering from. Mr Kermode: I think, in matters like this, the greater Mr Kermode: I must admit I have not looked at a death degree of expressed consent the better. For painkilling drugs certificate to see if that is actually is carried on there. I do not to... If you say to somebody, ‘We wish to administer drugs to know whether that is required or not Perhaps you do - control your pain, but the downside of these is that they might be shortening your life’ then that should be expressed. Mrs Hannan: I would have thought that... I am suggesting to you that the overlying condition would need Mrs Hannan: And that would be part of your suggested to be recorded as part of that public document counselling, explaining of what happens? (Mr Kermode: Yes.) Thank you. M r Kermode: That is one for the legal and medical people to talk about, definitely, with the death certificates. Mr Anderson: Just an initial question, M r Kermode: What we are saying is that we do not want it broadcast We can you just tell us what the membership of your organisation do want to respect the person’s privacy, but at the same time is? it must be somewhere recorded properly. Mr Kermode: Probably more than the Labour Party, Mrs Hannan: Right. Can I just ask you, in relation to (Laughter and interjection) but it is not really an issue here. pain control, because that is a part of the legislation, and it I do not know: 60-something. has been suggested that it is properly recorded as well and can be requested: in considering this topic, you mentioned Mr Anderson: 1 am not having a go at your organisation. pain relief and administration of drugs and the like. I think I am just making the point that some parties have been invited you also mentioned, not in those terms, the double effect of and some have not, and I wanted to get a feel for the size of relieving pain which would also have the effect of shortening your organisation, really.
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Mr M Kermode Oral Evidence SELECT COMMITTEE, FRIDAY, 21st MAY 2004 85 KCE
M r Kermode: The counts when we go to the polls... We they know that legislation is there, do you not think that have always done fairly well at the polls: Paul Kelly, over could be at the back of their minds and could, in some way* 1,000 votes in Braddan; llliam Costain, over 1,000 votes in influence their decision to go down that road? Rushen - you would remember that, Mr Gill; myself, I got - (Interjection and laughter) M r Kermode: Given the regime of counselling that we are talking about and that it has to be done at the earliest Mr Anderson: So, your membership is probably around possible time, and most people do get diagnosed well before about 60-ish? things get really bad, the person will be acting, or should be acting, very much under their own opinion, and in a state of Mr Kermode; As I understand. I do not keep the mind which is not prejudiced by an ongoing loss of faculty, membership records. at that point So, I really do not believe that that would be the case. M r Anderson: Okay, thank you. You sat in earlier this I am not saying that it has never happened, because I am afternoon and listened to what Dr Harris said about pain quite certain that it has, but how many people, really, would relief, and a lot of the issues that seemed to be raised in your start trying to encourage their close ones to commit suicide discussion with your party were related to the pain issue. by whatever method, rather than go through the normal Would you agree that if your membership had the privilege process? of hearing that sort of question and answer dialogue, they would be better informed on the pain issue of this whole M r Anderson: But would you agree that there is quite a subject? Would you go along with what was said that, with fine line between depression and mental illness and that very modem palliative care and modem drugs, the pain issue to fine line is very difficult for medics to interpret? do with terminal illness is not such a big thing now? Mr Kermode: I am not a medical person. As I understand M r Kermode: All I can say is, from my own personal it, depression is a form of mental illness, but it is a treatable experience, having been in hospital and in the Hospice one. Anyone who gets diagnosed with terminal illness is fairly recently, that the people I have seen there have been bound to suffer some degree of depression, but that does not in pain. seem to stop people functioning very well, very focusedly, when this happens. M r Anderson: Okay. We will move on, then. Do you I have often thought to myself, ‘Good heavens. If think that any legislation that the House of Keys and Tynwald somebody told me I had six months to live, it would be a put forward should protect vulnerable groups of people? teniblething’, and yet when that actually happens to people, they seem to cope remarkably well, in most circumstances, M r Kermode: Vulnerable groups of people should and have a high degree of focus, even a will to live. So, I always be protected, in any field. do not really regard that the scenario that people will be encouraged to take their lives early by other people would be M r Anderson: Would you not agree, then, that people an issue, and I do not believe that very many people would who are terminally ill are a vulnerable group of people and actually, faced with this option, wish to take it that, if legislation was in force, that could impact some way As J said before, we do feel that, even at the lowest on people’s decisions because they knew that legislation was change, most people would not opt to take this. there, especially if they thought they were being a burden to their family or their carers or the community at large? Mr Anderson: Do you think, then, that we should be making legislation for such a small minority when we could M r Kermode: I do not think, on an issue like this, be exposing a bigger group of vulnerable people? especially with the proposals we are making, that really would be the case, because the counselling would come Mr Kermode: We are not exposing a bigger group of from an impartial person. vulnerable people, as far as we can see. What we are saying But you do have the instance now where more and is that there are definite instances where people feel that more people are being put into care homes, frequently by their quality of life, their dignity, this very important part of the children or closest relatives, and you could argue that our life and death... They feel that they want to take issues these old, vulnerable people are simply being shuffled into into their own hands and, as the law stands, the rest of us are a convenient place where they will not be a burden. So, you saying, ‘No, you cannot do that’, because of our feelings. could argue that that is happening now. What we decided, eventually, was that we did not have I am not suggesting that is the case; I am simply saying the right to impose our feelings on other people to that degree, that we have a parallel already there. But, in the regime we even if it is only a small minority, or we perceive that it would are talking about, the fence - the pole - would be that much only be a small minority. We feel that, on such an important higher. Our framework actually makes it very difficult for issue, that is the person’s own decision. that to happen. I do not see anybody turning round and saying, ‘Oh, I feel a bit of a burden. Please stick a needle Mr Anderson: What limits do you think a society should in me.' place on personal autonomy, then?
M r Anderson: Do you not agree that they would not Mr Kermode: Certainly, where your actions do not necessarily come out with that phrase but, because they feel impinge upon another person, what right does society have they are a burden to their family - and maybe, in certain to interfere with a person? The popular phrase is ‘what circumstances, there could be financial implications - and you do behind your own doors is your affair*. There are all
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Mr M Kermode 86 KCE SELECT COMMITTEE, FRIDAY, 21st MAY 2004 Oral Evidence sorts of personal abuse that you can indulge in: alcohol and but in these instances, yes, there should be a case and we smoking. Now, because of the passive smoking element, actually specify there that the file should be passed to the of course, tobacco is becoming a more contentious drug. coroner. If it went to other doctors, it would be effectively Alcohol, when it becomes a menace to other members of fulfilling the same function, but, yes, there would have to society, is a contentious drug - and it is a drug - but we are be independent evidence to show that all stages have been not saying, ‘You will not drink.’ complied with, and these should be available for inspection Some societies do and, in fact, in this world, they are by professionals. popularly referred to as despotic societies. They do not have alcohol problems. M r Downie: Fine. Good. By and large, then, you feel that some form of change in the law would be acceptable in Mr Anderson: So, finally, then, if there is a choice the Isle of Man, provided it was properly controlled? between making legislation for a small group at the potential of opening up an area to a vulnerable group, you would go M r Kermode: We do. A high level of control, but we do for the first and not the second? think that the principle of a change is acceptable.
M r Kermode: You keep on talking about a vulnerable M r Downie: And just to reiterate: just for a limited group, but you have not identified it to me yet number of circumstances, terminal illness where a person is suffering severe pain - Mr Anderson: I think most people would accept that terminally ill and ill patients are a vulnerable group of M r Kermode: Or loss of faculty. people. You would? M r Downie: Or loss of faculty. Mr Kermode: Yes, but I have already said who, after getting diagnosed as terminally ill, rushes out and says, ‘Oh, M r Kermode: You mentioned the Diane Pretty case. I want to die now’ ? It very, very rarely happens. Furthermore, That would probably be the sort of thing that would qualify we have said that a counselling regime must be in place to for it make sure that they are not pressured, that these people are not coerced in any way, shape or form, so that the vulnerable M r Downie: I know it is a touchy issue, but did you ones are protected. have any discussion in your group about euthanasia being available for young children with terminal illness? M r Anderson: No more from me, Mr Chairman, M r Kermode: We touched on this. I am sorry, but I do Mr Downie: A couple of questions for you, Mr Kermode. not think it is mentioned specifically in the document. I am quite impressed by the amount of work you have put into this. I would just like to ask you: who was involved in M r Downie: That is why I asked you. the discussions within your group regarding euthanasia and what research or consultation was carried out prior to your M r Kermode: Right No. It can only be by a consenting presenting the paper? adult, and I know that leaves the question, ‘Well, what about children who are going through this sort of thing?’ M r Kermode: The group was the Executive Committee Unfortunately, we feel that they are not sufficiently plus any other members who wished to make any input in emotionally developed to - terms of a written submission or come along to the active discussions, so that was the formulation. M r Downie: Right The last thing I want to ask you is As I did say when I was reading from there, we did not that, obviously, there is a legal and a moral dilemma within start researching in terms of what other countries are doing; the BMA and the Royal College of Nursing currently. Would we looked at it from a very ‘bottom-up’ sort of viewpoint: you feel that, if the Isle of Man were to go down the road what do we think should happen? So, it was very much done of introducing this legislation, a person seeking euthanasia on a basis purely of principle and where we could find a bit would be better off going to an organisation, say, outside the of background on law and generally what is going on. The National Health Service or do you feel that this is something internet was obviously involved in a bit of research. that should be delivered from within the Island’s normal healthcare facility, which is state run? Mr Downie: I was interested that, in your presentation, you referred to, possibly, the production of a special death Mr Kermode: What we have said is that we do not want certificate, (Mr Kermode: Yes.) so that obviously the cause to see ‘death clinics’, so if this was available, it would have of death, which would go into the newspapers, just would to be on the back of an existing medical facility. We have not be shown as euthanasia, but I suppose, with what you not specified private or National Health. Since we advocate suggested today, there could be a short post-mortem report a change, it would be nice to see the National Health Service without an autopsy but with the safeguards that that could be being willing to participate in it. Does that answer your independently assessed by other doctors to make sure that the question okay? criteria laid down in the legislation were adhered to. Mr Downie: Yes, fine, thanks. M r Kermode: Yes. As I understand it, if somebody dies within a certain time of being examined by a doctor and M r Rimington: I, too, like some of my colleagues, their death was expected, there is no need for an autopsy, am interested in the body that came to the conclusions,
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Mr M Kermode Oral Evidence SELECT COMMITTEE, FRIDAY, 21st MAY 2004 87 KCE because most of the people who have come here have been be, as several people have expressed concerns, the first representing an organisation or a professional body of step towards saying, ‘Well, they are getting on a bit. It opinion and, in fact, I think possibly you are the first person would be better for them and for society to help them on who represents a cross-section of the public. If we can take their way’? And we are satisfied that that is not the case, out the Mec Vannin side of it, outside of that, you are a public that this would not be a result of it. And if we thought that body. (Mr Kermode: Yes.) Can you give me a flavour of the was potentially the result of it, we would not have even people - obviously not their names, but their occupations or considered advocating the change. We do think that Manx whatever - who were involved in the... society is broad shouldered enough, in spite of its many faults, to handle this responsibly. Mr Kermode: A very broad range. We have small businessmen, teachers, students. I was an engineer for 20- Mr Rimington: Yes. Thanks. something years, a precision engineer. I really do not know others’ professions, you know. I meet them, but I frequently The Chairman: I do not think my colleagues have any do not know what they actually do. But, yes, it is a fairly other questions, so could I conclude with just one, please, broad cross-section. Yes, we have had medical doctors in - 1 Mr Kermode? (Mr Kermode: Yes.) You will be aware, do not know if we have got any at the moment perhaps, of the UK Bill, where one of the specifics in relation to the people that would be eligible to be considered under Mr Rimington: If nothing else, I would like to thank you, this BUI is defined as a ‘terminal illness’. Perhaps just for as a group, for sitting down and putting that considerable the Hansard if I read that to you, the definition that comes time in and coming up with something which is actually with this Bill is: replicated elsewhere. The same principles are replicated elsewhere. I do not know if you would accept that your idea ’Terminal illness means an illness which, in the opinion of the consulting physician, is inevitably progressive, the effects of which saying something different to a death certificate is similar cannot be reversed by treatment, although treatment may be successful to the review committee in the Netherlands legislation or in relieving symptoms temporarily, and which will be likely to result the proposed monitoring commission in the UK. They are in the patient’s death within a few months at most* probably the same - There is no definition of ‘a few months’, but - M r Kermode: Dare I say great minds think alike? (Laughter) Mr Kermode: I think we mean a year at most there.
M r Rimington: Better not say it too often! (Laughter) The Chairman: Yes. I think it would say a year if it I have not really got much to ask you, but I do welcome meant more than that If we work on that assumption, just what you have said so far, in that old people are covered going back to the burden concern that was raised, what in most things. Do you think that the Isle of Man and your benefit, to be blunt, would somebody who hoped to benefit view on Isle of Man society would take us down the route from the death of the person in question... If they were going of the slippeiy slope? to be left a house, for example, would you think it would be a realistic concern that they would be urging their loved one M r Kermode: No. The first thing, of course, is that we not to be a burden, given those circumstances? would never run away from the term ‘nationalist* and we have a fair degree of socialists in, but we are not National M r Kermode: If the person is as good as guaranteed Socialists. National Socialists were a body of people in to die within a few months, there is hardly any point in Germany who adopted fascism. Elements of the Conservative hurrying them along unless you are exceptionally greedy. party in England, which seems to be very well treated over Sorry to be blunt about this, but there are those people out here, could be very fairly described as ‘fascist’. We are on there, I suppose. the left, on the other side, not far left but we are on the other I can only, with a question like that put myself in the side of that. And if you look at our track record on public position: if one of my children came to me if I was terminally statements we have made, we tend to be a liberal party. We ill and said, ‘Hey, Dad, have you left me the house, by the have opposed... The birching lobby was one of the things. A way, and have you considered voluntary euthanasia?’ I lot of people expected us to be pro-birch; we were not There think I would be inclined to say, ‘Question I - yes, but it is are a lot of members who are very anti-capital punishment, changing. Question 2 - no.' (Laughter) that sort of thing. So, we do tend to be more liberal. The Chairman: Thank you. And just finally, then, would M r Rimington: From your view of everybody else you think it would be a fair position to say that abuses of outside or Manx society or parliament, the lot, do you think a system or any legislation, as we heard from the previous that, whatever the weaknesses - you obviously, as a political witness, can occur whatever safeguards there are, but they party, perceived weaknesses, otherwise you would not have are more likely to occur in an unregulated system? come together - our society, widely speaking, would be in danger of going down a slippery slope if we introduced this Mr Kermode: I think abuse is more likely to occur in an legislation? Can I put words into your mouth and then you unregulated system. Using abortion as an example - which can refute them? Do you think we are sufficiently strong in has certain parallels to this, of course - when abortion was the sense of our values and... completely illegal, back-street abortion was going on, with quite horrific results in many instances. It raises the question Mr Kermode: I think we are. Obviously, it was discussed of people being despatched early now and, as I inferred in on several occasions during the course of things. Will this the document, a lot of people feel that that is going on - not
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Mr M Kermode 88 KCE SELECT COMMITTEE, FRIDAY, 21st MAY 2004 Oral Evidence expressly, but it is understood, on many occasions, that it When the issue did arise, we did say, ‘Is this an issue for will do the person no harm to receive a dose that may result us to deal with?’ and we said, ‘Yes. As a political party, we in their death, and that is tacitly accepted, as is mentioned. must deal with i t ’ We are not a campaigning group on this So, we perceive that this would actually alleviate that issue, but we felt it was our duty to make an input on it, so situation. we thank you.
The Chairman: I am conscious of the clock and thank The Chairman: Thank you very much, Mr Kermode, you for attending on a Friday afternoon. Are there any and ladies and gentlemen. That concludes the sitting for concluding comments that you would like to make? today.
Mr Kermode: No, except to thank the Committee for their time and for making this opportunity available to us. The Committee sat in private.
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Mr M Kermode HOUSE OF KEYS OFFICIAL REPORT
RECORTYS OIKOIL Y CHIARE AS FEED PROCEEDINGS DAALTYN (HANSARD)
SELECT COMMITTEE ON VOLUNTARY EUTHANASIA
BING ER-LHEH MYCHIONE COYRT-GY-BAASE MYGHINAGH LESH COARDAILYS
Douglas, Wednesday, 23rd June 2004
Published by the Office of the Clerk of Tynwald, Legislative Buildings, Bucks Road, Douglas, Isle of Man. © Court of Tynwald, 2004 Printed by The Copy Shop Limited, 48 Bucks Road, Douglas, Isle of Man Price Band C 90 KCE SELECT COMMITTEE, WEDNESDAY, 23rd JUNE 2004
Members Present:
Mr Q B Gill MHK (Chairman) Mr D M Anderson MHK Hon. A F Downie MHK Mrs H Hannan MHK Hon. J Rimington MHK
Clerks; Mrs M Cullen, Deputy Cleik of Tynwald
Business transacted
Page
Procedural...... 91
Evidence of Mr J L M Quinn, St Bridget's Hospice...... 91
The Committee adjourned at 12.00 p.m. until 12.05 p.m.
Procedural...... 101
Evidence of Dr R Huxtable, Bristol University...... 101
The Committee sat in private at 1.17 p.m. Oral Evidence SELECT COMMITTEE, WEDNESDAY, 23rd JUNE 2004 91KCE
and families on the Island. House of Keys Select Committee In my role as Chairman of Hospice Care, I am concerned with all aspects of the care which we provide to our patients on Voluntary Euthanasia and to their families here on the Island. I think it might be worthwhile, very briefly, just explaining what Hospice Care is. It is a company which is The Committee sat in public at 10,30 a.m. limited by guarantee. It is obviously based here, and its only in the Millennium Conference Room, objects, which are charitable objects, are to provide hospice Legislative Buildings, Douglas care to patients and families here on the Island. Like any company, it has directors, which, in the case of Hospice Care, are called members of a management [MR GILL in the Chair] committee, as opposed to a board of directors. We, therefore, have a management committee of which I am the Chairman, which is made up of various people of various disciplines, and, as members of the management committee, they are, by Procedural law, charity trustees and have the same legal responsibilities and duties as charity trustees generally. The Chairman (Mr Gill): Moghrey mie, ladies and The members of the management committee have been gentlemen, Mr Quinn. Welcome to the sitting of this Select selected for their commitment to the work of Hospice Care, Committee looking into issues around voluntary euthanasia. and the skills and experience which they can offer, the aim I think, Mr Quinn, do you know all the Committee? If not, being to have a balance of skills and experience needed to we will - direct the work of Hospice Care. Just to give you a sample, the present members of the Mr.Quinn: Yes, I do. management committee are: myself, I am an advocate, in practice, a past president of the Law Society, and I bring The Chairman: You do, yes, okay. to the management committee my experience as such; we The practice we have adopted, Mr Quinn, is to give have Penny Crichton, who is a retired Board of Education witnesses the opportunity to make a short presentation and adviser, Les Doherty, who is a retired Managing Director then go into a question-and-answer sequence. Would that of Marsh, Isle of Man, who brings with him his business format be acceptable to you, sir? acumen; we are privileged to have Alan Townsend, a retired consultant gynaecologist; John Brown, an investment Mr Quinn: Certainly, Mr Chairman. banker; Philip Dean, a chartered accountant; John Dennis, an IT and marketing specialist; Charles Crossley, a chartered The Chairman: Thank you. Of course, we are being accountant; Dr Neil Hocking, consultant physician and recorded for Hansard so if the Hansard Clerk indicates that medical director at Noble’s Hospital; and Dr Harding, who he is having difficulty in hearing what we are saying, perhaps is a general practitioner, representing general practitioners we could just be mindful of that. on the Island. A representative of the Department of Health and Social Mr Quinn: Yes, thank you. Security also attends all regular meetings of the management committee. The Chairman: Mr Quinn, could I just confirm that you The management committee’s main role is: to ensure the have had two notes of outline questions? charity’s activities are within the law; to ensure the charity’s activities remain its charitable objects; to determine the Mr Quinn: Yes. I was just going to ask, Mr Chairman, charity’s mission and purpose; to develop and agree the would you wish me to go through those questions at this charity’s strategic plan; to agree the budget and monitor stage? Might that be helpful, if I went through those? performance; to ensure the charity’s property, assets and resources are managed and protected effectively; to monitor The Chairman: 1 think we will leave that entirely with the charity’s services; to ensure accountability as required yourself, if you want to present, and then we will come back by law; to appoint a general manager and to monitor his to those, or any other questions that arise. performance; to appoint senior staff and monitor their performance; to act as a court of appeal on personnel matters; and to act within the powers set out in our governing document, which is our memorandum of association. EVIDENCE OF MR J L M QUINN Members of the management committee, as trustees of the charity, have a serious legal responsibility requiring Mr Quinn: My name is John Quinn. I am the Chairman them to take an active role in the governance of the charity. of the Management Committee of Hospice Care, an office We are, by law, required to act in person, and any decisions which I have had the privilege of holding since May 2001. affecting the charity have to be made collectively. Just very briefly, prior to my appointment as the Chairman We do, however, have the power to delegate, and in of Hospice Care, I had had no previous involvement with this respect we delegate the day-to-day management of the the charity. My only experience was that during 2000, my charity and its operations to our staff, who we must ensure father, James Quinn, died at St Bridget's on 15th November are properly educated, qualified and, certainly from our point 2000, and that is how I became aware of the services and of view, have access to continuing education, particularly in the help and support which Hospice Care gives to patients the field of palliative care.
Procedural House of Keys Select Committee on Voluntary Euthanasia - Evidence of Mr J L M Quinn 92KCE SELECT COMMITTEE, WEDNESDAY, 23rd JUNE 2004 Oral Evidence
I think, I should mention the position concerning physiosociological symptoms which a patient or their family Hospice as far as the regulatory point of view is concerned, have problems with. and especially from the point of view of the patients of I am asked, ‘How many at-home patients come to Hospice Care. The patients of Hospice Care are protected Hospice?’ If by this you mean how many of the patients in three ways: firstly, by general criminal law; secondly, by being treated in their homes end up in the in-patient unit regulations as to how the Hospice operates and its medical then the answer is generally very few. staff’s professional standards; and thirdly, by the Department It is only if a patient’s symptoms are such that they need, of Health and Social Security's own registration rules. for example, specialist nursing equipment - for example, Hospice must be registered under the provisions of the hoists - or perhaps more focused or specialist symptom Nursing and Residential Homes Act 1988, and, under that control, that they would have to be transferred to the in Act, the Department of Health and Social Security issues to patient unit Hospice a licence ora permit to operate, and the relevant Our philosophy is to try and accommodate a patient’s provision is under section 1 of that Act, as we are operating wishes. If they are at the end of their journey and their premises which are used for the reception of and provision wish is to, perhaps, die at home, we will do our best to of nursing for persons suffering from any sickness, injury accommodate that or infirmity. If you mean how many patients come to us from their We are subject to periodic inspections; we are subject to home, not whilst they are under our Hospice at Home any regulations which the Department issues concerning, for service, then the figures vary. If you analyse the figures of example, the control of drugs and their use, storage, security, our admissions, for the year ending 31st December 2003, and we are subject, as I have said, under that particular Act, 126 of the 199 came from their home. as well as general criminal law, to prosecution if there was I think it is important to say that they would, at that stage, any incidence of an offence of ill treatment have been under the care of our St Bridget’s MacMillan So, as far as the public are concerned, they are protected nurses, but not necessarily receiving the Hospice at Home in the same way as any patient entering Noble’s Hospital, care service. Sixty-one came from the hospital, and 12 came from the general rule of law, and, in particular, in our from nursing or residential homes. instance, under the regulation and control and inspection of I am asked, ‘Are Hospice policies consistent with the Department of Health and Social Security. community treatment as with in-patient treatment in hospitals Hospice Care on the Island offers care to patients who are et cetera?’, and the answer to that is yes. suffering from life-threatening or terminal illness, primarily In this respect, you will, please, appreciate that we do for those suffering from cancer. However, there are a few not work in isolation, but closely with general practitioners, instances where our services are made available to non the hospitals, the doctors there, consultants, the nurses in the cancer sufferers and in that respect, in respect of patients community, from whom our referrals are received. who, from my perspective - and I say this as a lay person It is only for our own in-patients, once they come under - are reaching the end of their journey with their disease, our care, that we would get into the situation of prescribing and are in need of palliative care. drugs, and this is, generally, in accord with a treatment plan, The concept of Hospice in treating its patients is to either defined by the hospital or the GP treating the patient, promote comprehensive care for those with life-threatening or designed in conjunction with them. We do not work in illness, in order to maximise the quality of life remaining, isolation. enabling patients to live until they die. I am asked, ‘What evidence is there that voluntary I have been asked, ‘What are the numbers of patients in euthanasia or patient-assisted suicide in tightly-controlled Hospice or at home receiving a service?’ I will try and help circumstances would undermine Hospice on the Isle of Man?’ you with the relevant statistics. I am not aware of any local evidence. The total number of patients on our books, at the It is not, however, in my view, a question of undermining beginning of May 2004, was 355. At the beginning of May the Hospice position, as we are not seeking to argue that 2004, there were eight patients in our in-patient unit At the euthanasia or assisted suicide would undermine Hospice beginning of May 2004, there were some eight patients being Care on the Island. On the contrary, our aim is simply to treated in their homes by our Hospice at Home service. promote, as I have said, the comprehensive care of those with The number of patients in the in-patient unit or under our life-threatening illnesses, in order to maximise the quality of care at home varies from time to time. For the year ending life remaining, enabling patients to live until they die, and 31 st December2003, there had been a total of 199 admissions to promote the concept that euthanasia and assisted suicide to the in-patient unit, and some 103 patients had been cared should not be an option. for by our Hospice at Home service. I am asked, ‘Are any groups excluded from Hospice As I have said, at any one time, there are in excess of Care?’ As I have explained, no cancer patients are excluded, 300 patients on our books. They will, however, be receiving but as I have said, we are, essentially, a cancer charity. We our full range of services, perhaps attending our day unit do, however, offer hospice care to any other condition in the receiving our complementary therapies, attending our terminal phase, where treatment has got past the stage of physiotherapy unit our lymphedema nurse, our occupational managing the disease itself, to managing the end stage. therapy unit being guided by our social worker, or being There is, however, a gap. We are not able to offer the attended to and advised on their treatment by our St full range of our palliative care services to non-cancer Bridget’s MacMillan nurses working in the community, or, patients. alternatively, making use of our bereavement services or I am asked, ‘Is Hospice a person-centred organisation our chaplaincy. or service led?’ It is completely person centred. Patients We view all of those aspects as part of the symptom are involved at all stages of the discussions concerning control and management whether it be the physical or their treatment plan and their care, and their treatment plan
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Mr J L M Quinn Oral Evidence SELECT COMMITTEE, WEDNESDAY, 23rd JUNE 2004 93 KCE is designed around their specific and individual needs and governing patient care, with which they have to comply. Part aspirations, and it is always of some amusement, in some of that protocol, part of the protocol and guidance issued by ways, to me, to compare it perhaps with a hospital regime, the British Medical Association to its doctors, is that they because insofar as our patients are concerned, they wake must consult with their patients, and we do. when they want to, they eat what and when they want, and, Now, I do not know whether you have considered the essentially, our role is to try and do whatever they want us General Medical Council’s guidance on withholding and to do, within reason. withdrawing life-prolonging treatments and good practice Our patients and people who represent them are also in decision-making. If not, I would urge you to do so. I do involved by us in the development of our services, so we not propose to refer to that in any detail. It is there in print consult with them. for everyone to see. I am asked, ‘Have there ever been any circumstances in which dosages of life-shortening medication have been The Chairman: Would you be able to give us a copy prescribed in the Isle of Man Hospice?’ The answer to of that document? that is no, and I have specifically put that to our medical director, who assures me that, to his certain knowledge, Mr Quinn: I can certainly do that no dosage has ever been prescribed with the intention of shortening life. That is completely contrary to the Hospice The Chairman: Thank you. Care philosophy. I should say that it is the view of Hospice Care and those Mr Quinn: I am then asked about the control of involved in palliative cate medicine, that medication given medication, and if I could perhaps explain what happens: in the terminal stages of life does not hasten death. The all medication given in Hospice - or indeed, if the situation patient dies as a result of the progression of the underlying arose, to a patient under our Hospice at Home service, which condition. We do not prescribe medication with the intention is very unlikely, because I have said they are usually under of hastening death. the care of their own G P - has to be prescribed by one of our I am asked,4 Do you employ a multi-disciplinary care doctors. None of our nurses can prescribe medication. team? If so, is the chaplain always part of this team's Controlled drugs, such as morphine, have to be deliberation?’ The answer to that is yes. Our multi administered by two registered nurses. Our medication is disciplinary team always consists of doctors, nurses, the issued to us by Noble’s and is strictly controlled. The Noble’s chaplain, our complementary therapists, our physio- and our pharmacist periodically inspects, checks storage, supplies, occupational therapists. and carries out an audit of our drug book; and, as I have said, We do not at the present time have, as part of our staffing, we are also open and are inspected by the nursing-home a psychiatrist We have identified a need and are simply trying inspectorate who similarly, as one of their functions, carry to find resources to make that appointment out a check of our drugs, our usage, our drug book and our At the present time, as and when the need arises for any security of the medication we hold. psychiatric help, we have to buy that skill in for our patients, I am confident that the proper controls are in place at and we do. Hospice Care, as far as medication is concerned. I am asked, ‘How would Hospice respond to a persistent Our doctors, in prescribing drugs, as to quantity et cetera, informed and competent response for voluntary euthanasia follow the advice from the Mersey Network Group and or patient-assisted suicide now, and if the law allowed advice from hospital consultants, but, as I have said, also voluntary euthanasia or patient-assisted suicide in the work as part of a team - we do not work in isolation - and future?’ Our response now would be to decline, as neither if a patient often comes to us with a defined treatment plan, voluntary euthanasia or patient-assisted suicide is on offer then they will work within that plan. or, of course, is legal. I am asked about registration of deaths. On the death of If legalised, as the Hospice philosophy is currently drawn, a patient in our care, the procedure is exactly the same as at it could still not be an option which we would offer our the hospital or elsewhere, in that the death certificate need patients. It would take a change of the Hospice philosophy only be signed by one doctor, normally the doctor caring for to enable that to happen, and I would say I would find it hard the patient unless, of course, there is a cremation. to imagine that that would ever happen, as to do so would, In the case of a cremation, a second doctor has to sign in a sense, be an admission that Hospice Care has failed to and, before doing so, has to view the body. The cremation provide the patients with the palliative care they require. form has then to be signed by a third doctor. I am not too At Hospice Care, we are not prepared to accept that sure, actually - and I should say this because I may have pain and suffering cannot be controlled to an acceptable actually got this wrong - whether it is the second or the third level, resulting in the patient and their family achieving a doctor who has got to view the body, but certainly one other reasonable quality of life, and the patient as I say, being able doctor, other than the doctor treating the patient, has got to to live until they die. view the body. I am asked about patient consent As I have said, our As far as controls are concerned: no different to anywhere patients are under the care of our own doctor certainly when else* It is a doctor’s duty - so that is, if it is a case of they come into the in-patient unit or when they, perhaps, cremation, any of the three signing - to report any death he are being treated at the Hospice, under our Hospice at Home considers suspicious. In addition, a family member, friend, service, but in those circumstances more likely under the carer, or whoever, could report a suspicious death, which direct care of their GP. We expect that they will comply - this could then lead to an autopsy, which, as you will be aware, is all the doctors - with best medical practice in treating routinely includes toxicology. So, our position is no different their patients. from anywhere else. We have issued our own doctors with a protocol I am then asked whether I can feel that in some difficult
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Mr J L M Quinn 94 KCE SELECT COMMITTEE, WEDNESDAY, 23rd JUNE 2004 Oral Evidence
terminal circumstances, where pain and suffering cannot Morphine, which we all think of, in this respect, as be effectively controlled, patients in the care of Hospice being perhaps the most effective painkiller at this stage of a should, subject to amending statute law, be assisted to have patient’s journey, with their disease, does not I am advised, a peaceful death. The simple answer to that is no. I do not damage vital organs. So, as I have said, we do not administer consider that that should happen. drugs with intentions of hastening death, as that would be an As I have said, we firstly do not accept that pain and anathema to us. We are content to let nature take its course, suffering cannot be effectively controlled to an acceptable and, by this, I mean the nature of the underlying disease. level. We are not, however, suggesting that a position would Perhaps, I should, at this stage, explain our admissions be achieved where there will be an absence of pain, but we policy into our inpatients unit and, certainly, for our Hospice believe we can get it under control and the patient to the stage Care unit The fallacy is that it is a place where people come where they are content to live their life until they die. to die, and nothing can be further from the truth. In my relatively short time at Hospice, I can certainly say The admissions, generally, fall into three categories: I have not come across a situation where this has not been those in the respite care; those in need of focused symptom achieved for a patient under our care. control and, as I say, that may not just simply be the physical The development of palliative care and medicines pain and suffering, but also the psychological and, perhaps, continues apace, and who knows how things will progress there are social and spiritual matters which need to be in the future? This, however, may - and I think we have got addressed; and then, finally, those who have, unfortunately, to acknowledge - result in the patient being slightly sedated reached the end of their journey. at times as part of their pain control regime, but often this The first two categories will be discharged once they is temporary, until such time as the patient gets used to that have, in simple terms, had their respite care, and once their regime. symptoms are under control. 1 think it is also very important to understand that the Those who come to us at the end of their journey, as I have treatment of pain and suffering is not just a question of said, are referred to us by GPs, by the hospital, nursing homes issuing medication, but also by means of our non-drug and the residential homes or by community nurses. Those interventions, which are complementary therapies, et cetera. people are dying, not by our diagnosis, but usually that of Achieving a peaceful death is very much part of the Hospice others, and our job, at that stage, for that category, is to make Care aim, but not before patients* time, and that time is them as comfortable as possible, both physically, mentally dictated by the progress of the underlying disease, not by and spiritually, and do whatever we can in that regard. the patient's wish to die. Once admitted under that category, it is the nature of And, as I have said, we help with the non-drug intervention: the disease from which they suffer which will dictate their sometimes, the symptoms are more psychological than passing - not us or the medication which they are given by us. actually physical, and in that respect, we offer aromatherapy, I am asked, ‘Where large doses of pain-relief drugs acupuncture. We, as I have said, have excellent nursing have been administered which could have contributed to the equipment, such as pressure relieving mattresses and hoists. ■- impending death of a patient what is entered on the death We refer to radiotherapy, we provide psychological support certificate, and what safeguards are there in the system?* when necessary, and, importantly, we get involved in solving For example, I am asked, ‘Do two doctors sign the cause many social problems, and we offer spiritual support of death?’ I have asked my team, and 1 am told that, in die 21 years Firstly, the only dose of pain relieving drugs ever given of providing hospice care to over2,500 patients on the Island, will be the dose that is required to bring about pain relief no-one is aware of any patient or family member asking for to a particular patient, no more. It is the considered and an assisted death or to hasten their death. clinical belief of palliative care physicians that this does not I am asked to explain how the present Hospice philosophy contribute to the death of the patient, despite the seemingly of providing pain relief functions and: ‘Are certain dnigs popular misconception that it does. administered in the final stages of Hospice Care that would The patient dies because of the progression of the seriously damage vital organs, in order to bring about a underlying disease. By analogy, before the development of peaceful death?’ Pain relief for our patients is achieved by modem medicines and palliative care treatments, people died dealing with each patient's individual needs and making an because of those diseases, even though no painkillers were assessment encompassing physical, psychological, social given. The death certificate only records the cause of death and spiritual concerns. namely the underlying disease, for example breast cancer, This assessment as I have said, is carried out by a as that is the cause of death. trained multi-disciplinary team, who then, in conjunction I have mentioned already, Mr Chairman, the position or consultation with the patient, or if the patient is perhaps regarding the death certificates, and I do not need to make not in a position to be so consulted, with their family and any further comment on that carers, come up with a therapeutic plan, drawn up which I am asked for my views on hospice care in America would involve a whole range of drugs and non-drug where, following a long period of terminal illness, euthanasia interventions. is offered as an option. In the short time available to me, I The medication usually would involve painkillers, which, have only found one of the 50 states in the USA that provides I am told, are anti-inflammatory painkillers, and anaesthetic euthanasia as a treatment option. techniques which we are able to provide with the assistance I think you should understand, however, that throughout of the Noble’s Anaesthetic Department. the world the hospice movement is not the same as in the Once we get to that stage drugs are not issued with the UK or, indeed, the Isle of Man model. Some, for example, intention of damaging vital organs, in order to bring about operate more like a private nursing home, charging large a peaceful death. The cause of the death is the underlying fees, and it may be that, in your researches, you might find disease in its terminal stage. examples in other jurisdictions where euthanasia has been
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Mr J L M Quinn Oral Evidence SELECT COMMITTEE, WEDNESDAY, 23rd JUNE 2004 95 KCE legalised, where something akin to a hospice may offer that not be involved in providing euthanasia or patient-assisted as an option; I do not know. suicide, even if it were legalised. All that I can say is that we at Hospice Care, here on the That, Mr Chairman, deals with the questions I was Island, disagree with euthanasia or patient-assisted suicide posed, and I am extremely grateful for having been given being offered as an option to our patients. the opportunity to consult with my medical team on those I am asked for my views on living wills. We consider that questions. I am now happy to try and answer any other living wills are helpful as they give a patient the opportunity questions you might have. of opting out of certain medical interventions in advance. They state a patient's preference about a time when they The Chairman: Thank you. Before I turn to my would not be competent to make a decision. Examples would colleagues, could you provide us with a copy of the article be to opt out of receiving cardiac resuscitation in the event you just related there, Mr Quinn, that you had written? of their heart stopping. In that case, of course, it is not the failure to resuscitate from which the patient would die, but Mr Quinn: Yes. Quite sure. from the cardiac arrest. If correctly drawn, with the proper legal safeguards, we can see that they will be of help to the The Chairman: Thank you. Mrs Hannan. caring team. However, living wills must not, and do not at present, Mrs Hannan: Yes, could I just ask you about the GMC allow a patient to opt in to an intervention that is not offered guidelines you mentioned? (Mr Quinn: Yes.) What does it They cannot currently be used by the patient to demand say about the situation that you related about the 79-year old any treatment - something like euthanasia, for example, man and about the pneumonia? or to demand a health transplant, for example, or any other treatment that is not available. So, we see them as being M r Quinn: It does not address that issue. It obviously very useful, as giving guidance for opting out, but not addresses the issue of a patient - if you could just bear with opting in. me for a second - who is in a position where they cannot But there are difficulties and, if I can, for a moment, put a decide for themselves - legal hat on, I wrote an article, recently, when I was reminded that medicine and the law are very uneasy bed-fellows, as the Mrs Hannan: But where they had a living will. law seeks to deal with certainties, and medicine uncertainties, and I would like to leave you with a little example which I M r Quinn: I did not find anything specifically on that focused on in that article. point The example is a patient who is 79. He lives in a residential home. He has a devoted family who visit him regularly. He Mrs Hannan: Could I refer you to the BMA guidance has dementia. He can, however, walk and feed himself, but where it says: he does need some help in some functions, such as dressing. His physical health is good. He recognises his family and is * Where a patient has lost the capacity to make a decision but has a very, very pleased, when they visit, to see them. He is unable valid advance directive refusing life-prolonging treatment, this must to read which he used to enjoyé He is undemanding, and he is be respected.’ popular with staff and gives no outward signs whatsoever of (Mr Quinn: Right.) So, I think that answers the point that being in any way distressed. So, for all intents and purposes, he appears to have a reasonable quality of life. When he was 70 he made a living will, when he enjoyed good mental and physical health. The residential home have Mr Qntnn: Mrs Hannan, I entirely agree, and I think I a copy of this. Under his living will, he had given an advance have said that we support the concept of living wills. What I directive that should he develop severe degenerative brain was really leaving with you to consider that - and this is not disease, or another condition of comparable gravity, and as wearing my Hospice hat but really looking at it from a legal a result suffer mental impairment, to the extent that he was point of view, that there will inevitably still be difficulties, unable to participate in decisions, then he did not want to be because if you give the rule of law, for example, to the living given active treatment, such as antibiotics, should he develop will and to adopt the BMA’s position there, which I think any life-threatening medical condition. states the law, as it is, it would not cover the situation that I One night, he came down with a high fever and was gave you as an example because there would be no choice. diagnosed as having pneumonia. With antibiotic treatment, You would then have a situation where the nursing home it was anticipated he would make a full recovery; without would have to comply with the wishes expressed by that it, there is a significant chance he would die, and 1 pose the gentleman when he was 70 and compos mentis. question: what would you do? Unfortunately, as I say, the law cannot necessarily So, there are difficulties. I am asked for the views of legislate for all conditions, especially when you are still doctors or nurses on assisting dying, working within the trying to balance the law against medicine. The fact of the Hospice or Angel environment, and I have asked that matter was that that gentleman, whether he knew it or not, in question. Both my doctors, nurses and my St Bridget’s his unfortunate state at 79, had a pretty good quality of life, Macmillan nurses work in the community, and all my and if they had asked the patient’s family for their approval, healthcare team are solidly against assisted dying as an or their view, they may well have said, ‘No, he is happy option, and I have also read of the surveys done by hospice enough, leave him be.* doctors and nurses in the UK that, similarly, have been solidly against legalising assisted dying, and more than that, which is Mrs Hannan: This relates to the situation that you important, nearly all have expressed the view that they would related, where it says that if a patient has lost the capacity to
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Mr J L M Quinn 96KCE SELECT COMMITTEE, WEDNESDAY, 23rd JUNE 2004 Oral Evidence make a decision, but has a valid advance directive refusing Mrs Hannan: Could I just ask about consent? (The life-prolonging treatment, this must be respected. Chairman: Yes.) When a patient enters hospice do they sign a written consent to say that they understand the treatment M r Quinn: I entirely agree with you. I am just flagging, that they are going to receive and... ? as I have said, legally, I can see difficulties, because that situation, I have just explained - M r Quinn; Yes, but at that stage the consent would not say, ‘This is what is going to happen to you’ because that Mrs Hannan: You are saying, in actual fact, that a living is not the way things work. The patient would come in... If will means nothing? you take it for respite care, that would be under a designed and agreed therapy plan. They would come in for symptom M r Quinn: I am saying to you, Mrs Hannan, that we control, again, under a designed treatment plan. support the concept of a living will as being very, very useful to my care team, in deciding how best to treat a patient, and Mrs Hannan: And they sign a consent for each of these we should respect their wishes. (Mr Quinn: Yes.) issues? Is it possible for us to see a copy I am saying to you, then, as a lawyer, that I can foresee of the consent form? difficulties. That is my only point to you. Mr Quinn: Yes, but it will not say what I think you are I am not arguing against them. I am just flagging, that . trying to find. It will not actually specify, ‘You are going irrespective of the views of my team at Hospice Care, there to receive this drug or that drug’ or whatever. This is just are difficulties. simply consenting to admission, to treatment and then the treatment follows on. Mrs Hannan: Would it not be then seen to be an assault In a sense, you then have to go to the medical notes for on that person, if action was taken? a patient to find out what is happening, because we do not work in isolation. So, a patient, as you well know, effectively, Mr Quinn: Well, that is one way of putting it I do not in simple terms is transported, with their medical history, want to answer that, because that is really a legal issue. with the progress of their illness to date, the medication they have received, the treatment that be it consultants, or GPs, M rs Hannan: It is a legal issue, that is why I am posing or whatever, are giving that patient, and that is the package. it to you. And then, you would move on, to discuss and agree with the patient, with their carers, with the professionals who M r Quinn: Yes, but I am not here as a lawyer. are already part of the team for that patient, for the ongoing treatment Mrs Hannan: You did state in the beginning that you But 1 can certainly let you have the admission form. were a lawyer. Mrs Hannan: The actual consent. (Interjection) It M r Quinn: I am a lawyer, Mrs Hannan. I am not here is informed consent I am looking for. Is there informed to advise you - consent?
Mrs Hannan: I am not asking for advice; I am purely M r Quinn: What do you mean by that? I am sorry. asking the position of a living will. Obviously, a patient is informed, because they are part of the discussion as to what treatment they will receive. Mr Quinn: 1 have told you that as far as Hospice is concerned, we support the concept of a living will. Mrs Hannan: I can come back. Thank you.
Mrs Hannan: Can I pose the question to you then: if M r Downie: Just before I put a question to you, I someone was in Hospice receiving painkilling treatment, would just like to put on record my support for the hospice and had pneumonia, what would be the position of the movement I think they do a marvellous job in the Isle of Man. Many of my constituents and personal friends have Hospice? benefited from the service that is provided, and I just want to make sure that goes down on the record. Mr Quinn: With a living will? Mr Quinn: Thank you very much. Mrs Hannan: No, without a living will, with a living will, whatever. Mr Downie: Just to come back to the issue that Mrs Hannan raised with you, about the person in the nursing M r Qninn; So, if the patient was in Hospice receiving home, where they had indicated some years previously in painkilling treatment, and they then had pneumonia, then the a living will... Could I just have a view: what would be doctors would consult with the patient as to his treatment, and the situation if the family insisted that, while the father the multi-disciplinary team, together, would decide on what was still in reasonably good health, although he was a little was the best thing, with the patient part of the consultation confused on occasion, he was enjoying a good quality of life, as to what should happen. they insisted that he receive medical attention,, or a course Now, obviously, Mrs Hannan, that would then take into of antibiotics that would bring him through his period of account the progress of the underlying disease from which pneumonia? Now, if the man died and the family made a the patient is suffering, and all other aspects to which I have complaint, I could see a large legal case entering out of that alluded. particular situation.
House of Keys Select Committee on Voluntary Euthanasia - Evidence of M r J L M Quinn Oral Evidence SELECT COMMITTEE, WEDNESDAY, 23rd JUNE 2004 97 KCE
Mr Quinn: Yes. I am struggling, Mr Downie, to answer or, alternatively, to be assisted in their suicide. that from the point of view of being a lawyer and also I cannot, really, say any more than that, but that paints Chairman of Hospice Care. the picture of our involvement I do take the point which Mrs Hannan has made, that, certainly, the way the authorities are developing, weight Mr Downie: Thank you. Thank you, Mr Chairman. is being given to a living will, and, in a sense, if the living will has been drawn properly, and is specific enough, the Mr Rimington: Can 1 pose a question to you that was courts are tending to give credence to the express wish, in posed to us by a previous witness, which was the issue of the preference to the wish of others. circumstances whereby a lorry had an accident and the lorry When you then introduce that element of the wish of driver was trapped in the cab. The cab was burning, and there others, as you have said, or the wish of the family, I would was no method of removing that lorry driver from the cab. suspect - this is now moving into my realm as Chairman The window was open. This hypothetical question took place of Hospice - that the doctors and carers for that particular in America, where the policeman was armed - all policemen patient would have regard to the wishes of the family, and are armed - and the lorry driver asked to be put out of his I would suspect that they would follow the wishes of the misery, rather than going through an agonising death. family. Would you have any philosophical views on what the I might urge, depending on how the law progresses, that, policeman should do in that circumstance? before they do so, they take legal advice, and if there was any particular issue, that they would have to go to the courts. Mr Quinn: The suggestion being that he should, as you Now, I am not trying to make a meal of this, but that is to say, put him out of his misery, show how we could fall into this trap, potentially, of, perhaps, I have got to say, I cannot accept that he should be legally putting too much weight onto a living will. I believe that they entitled to do that We do not live in a perfect world, where are helpful. I personally believe that the law, as it stands at we can anticipate all sets of circumstances. There will always the moment, is sufficient and if you try to give too much be an odd occasion, where the law cannot put right a wrong, weight to them, the sort of situation that I alluded to could and I can see, from that policeman’s point of view, a very, arise, and in that siutation I personally believe that common very good argument that his wishes should be adhered to, sense ought to dictate, and you cannot, necessarily, legislate but I do not think, unfortunately for that policeman, that that for that That is my personal view. individual circumstance, or the few circumstances that may arise, would justify changing the law, with all of the inherent Mr Downie: The reason I asked you that was that 20 difficulties that would then float from that years ago pneumonia was a major killer. So, I think that is the reality of life, unfortunately, and I know that is not a very good answer, but that is how 1 would Mr Quinn: That’s right see it, personally.
Mr Downie: Today, with modem drugs, you can treat M r Rimington: You have talked about the issue about pneumonia in probably less than a week. one part of your philosophy is to be actively against the I am interested in the comment you made about your concept of assisted suicide in these end-of-life circumstances, staff, and regarding their views, whether they felt, with and to accept that that might be an option would be an their vast range of experience with younger people with admission of failure of Hospice, in that you had not been able terminal illnesses... that none of those actually supported to provide to a sufficient degree the pain relief and suffering. the introduction of assisted dying or euthanasia. I wonder If, medically, it was or could be accepted - and I am not a if you could perhaps just broaden that a little bit more, and professional, so I cannot make this judgment - that despite the discussions with them. They are the people in the front all the best efforts of medicine, and all the care services that line. a body like Hospice might be able to provide - and I accept it is more than just medicine, and in no way wishing to say Mr Quinn: They certainly are, and what you have got to there are any shortcomings in Hospice, at all - there will remember is that our staff are involved really fromt the point be circumstances for individuals, there will be a percentage of diagnosis, these days. As soon as someone is diagnosed who will still suffer considerable pain or discomfort, or with cancer, in the hospital, we have, at the hospital, a St circumstances which they find totally unacceptable, whether Bridget’s Macmillan nurse, who specialises in cancer, and it is a combination of pain or loss of autonomy, or whatever, she is part of the treatment plan from day one. why then, in those circumstances, provided there were That treatment plan obviously anticipates, if you think sufficient controls within the law, should the wishes of those about it, the fact that you will get to the stage, unfortunately, particular patients not be granted? with many cancers, where you are going to have to face the challenge of pain and suffering. But we can look ahead, we M r Quinn: Firstly, we do not accept that there will be can plan for that, and so, I think, really, the important thing a percentage where a patient’s pain and suffering cannot be is that, because of the way Hospice Care has developed, controlled to an acceptable level. So, I think that really, is and because it is getting closer to the point of diagnosis, we the Hospice position or answer to that. So, in a sense, from are then on the journey with them, we can anticipate, and, our point of view, it is a non-issue. That is our experience. importantly, we get to know them, and so to that extent My view is that what ought to happen is that there should that is the reality of it That is why my staff are able to say be more effort made by Government to develop palliative to you that they have no knowledge of any circumstances, care services, and to the extent that if Hospice and others on the basis that these patients have been in receipt of our providing palliative care have any shortfall in being able to hospice care, of them wanting to either hasten their death address the issues, to ensure that that does not happen, that
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Mr J L M Quinn 98 KCE SELECT COMMITTEE, WEDNESDAY, 23rd JUNE 2004 Oral Evidence
that is something that should be looked at. will respect that there is a degree of clarity in law, and that legislation on this matter, where it exists, is quite explicit M r Rimington: Having been given your numbers on and, irrespective of the view of any particular body, the law your admissions and the number of people on the books and is the law. the number of people who are in-patients or in-home patients - and I think we could be on fairly common ground here, M r Quinn: Yes, I appreciate that, Mr Rimington, but widely speaking - if we were to look at the countries, or in the the law is also open to interpretation, and the interpretation case of Oregon, the state, where voluntary euthanasia, with of those particular bodies I have mentioned, they put whatever shortcomings, has been permitted, the numbers, if forward the view - which I neither support or object to, but you scale those down to the Isle of Man context, just on a I merely mention — that the law, in those jurisdictions where statistical, mathematical basis, then the numbers are in the euthanasia and patient-assisted suicide has been introduced, region of one handful, give or take. So, would you accept has imposed on a doctor a duty. It has shifted what we all that, if that was the case, if the number of patients in the Isle understand to be a doctor's genial duty of care to the patient, of Man in any one year who might wish, or might ask, to to the extent that they are in a duty to assist in a patient's go through that process of assisted suicide would be in the suicide, if that is an informed wish of the patient. I am not region of, statistically, around five - and it is not going to putting that forward. I am just saying that there is a contrary be a hundred, it is going to be in that sort of order - would view to what you have said. that undermine your activity, given that most of those people I can give you a copy of that paper, if you wish. would already have been involved with palliative care, anyhow? It is not an alternative to palliative care. M r Rimington: Yes, 1 just make the point People will make their views according to their - M r Quinn: I think I understand the point you are making but, as I want to make it clear, we are not concerned that the M r Quinn: Absolutely. I am sure you have heard that concept of euthanasia or patient-assisted suicide undermines view, or if you have not, I am sure you will. Hospice Care. Our concern is for the patient, when you talk of introducing euthanasia or patient-assisted suicide as an M r Rimington: I could go on, but I am taking up the option. Our concern is for our doctors and for the medical time. profession, generally, when you suggest to therrt that they have a duty to deal with their patients, and offer them the option of euthanasia and patient-assisted suicide. M r Anderson: Thank you, Mr Quinn. So, do not get me wrong, Mr Rimington: I am not here First of all, thank you for your comprehensive explanation saying to you ‘Do not bring it in because you are going to of the various roles that Hospice plays in different situations. damage Hospice Care'. I am saying to you: it is so contrary I think that has been very helpful to the Committee. to the ethos of Hospice Care and our views on what palliative Can you confirm that the guidelines that the Isle of Man medicine can do, that it would be wrong to introduce it-but hospice works to are basically the same as what happens in not to undermine us. We will continue to offer palliative care, hospices in the UK? You referred to hospices outside the we will continue to develop our service, we will become UK working to different guidelines. Can you confirm that more expert at it, as time goes on, whether or not euthanasia St Bridget’s - ? or patient-assisted suicide is available, but what it will not be: it will not be offered as part of the Hospice Care service. M r Quinn: We work on the UK model, yes.
M r Rimington: No, I just want to say ‘offered’ is Mr Anderson: Moving on, then, to treatment plans being probably the wrong expression. Also, that if there was a discussed with patients going into Hospice, once the patient change of law, it is not a duty. It would be permissive, as it is not able to deliberate, and talk about those treatment plans, is elsewhere, in the sense that any - is that then extended to the next of kin and family?
Mr Quinn: There are contrary views on that, and I am M r Quinn: Yes, we follow - which is a very useful not here to argue the contrary views. book to read, actually - The Withholding and Withdrawing of Life-Prolonging Treatments, Good Practice and Decision M r Rimington: No, but I am just saying where the Making. That sets out in very clear terms, how a doctor legislation exists elsewhere, rightly or wrongly, as you would approach this, and I will supply a copy of that, because might argue, it is permissive, in the sense that no medical it is very useful. practitioner is required to offer or undertake or be involved, in any way, with that procedure, if they do not wish to do so. Mr Anderson: Thank you. Moving on again then: we So, it would not be an imposition on any medical practitioner. have learnt a lot from you this morning - do you think the That would be the issue there. general public who have not had personal experience of St Bridget’s Hospice are well enough informed about treatment Mr Quinn: I hear what you say in that regard. I am paths, and the role of Hospice in various situations? aware that that is not the view which is being submitted by the Association for Palliative Medicine and National Mr Quinn: Mr Anderson, that is a difficulty I always Council for Hospice and Specialist Palliative Care Services face. I do my best to try and ensure that the public are in the UK. But that is their view, but I am not here to argue informed, because there is a misapprehension. People still that. They see it - believe that Hospice - it is sometimes the ‘H word*, as they say - is a word that you do not utter, because it is simply a Mr Rimington: Well, as a man of law, I think you place where you come to die, and I have issued press releases,
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Mr J L M Quinn Oral Evidence SELECT COMMITTEE, WEDNESDAY, 23rd JUNE 2004 99 KCE
I have done articles, I have done as much as I possibly can, because they do not have to send him to prison. You have to inform people that that is not the case. heard of your crimes of passion in other jurisdictions, not I take your comments, which I respect, that we still are necessarily here. That is perhaps one way of looking at it not getting the message over, and I will take that thought Look at the courts’ sentencing powers in circumstances of back with me, because we still need to do more, but we are that nature, but do not alter the crime. trying. Mr Anderson: Right thank you. I think that is all I have Mr Anderson: Thank you. Can I just move on now to got, Mr Chairman. recruitment of your staff for Hospice. Presumably, you recruit nationally to Hospice, as well as local people, maybe, moving The Chairman: Okay, thank you, Mr Quinn. Could I from the hospital situation into Hospice - echo the comments of my colleague Mr Downie in wanting to acknowledge the very good and the valuable work that Mr Quinn: Yes. the Hospice does, and I hope that you will not construe any of the questioning as critical of that work in any way. Mr Anderson: - and we had heard evidence before from Effectively, you began by describing that Hospice on both the Medical Society and the Council for Nursing and the Isle of Man operates as a company with charitable aims Midwifery that» in fact, if legislation on the Isle of Man came and, therefore, any policy changes that we have touched on in that was different to legislation in the jurisdictions round today would be matters for yourself. (Mr Quinn: Yes.) So, about, it could have a detrimental impact on attracting people there would not be any question of an imposition of policy to the Island, if we were the only jurisdiction, as you said, in changes. That would be a matter for yourself to determine, the British Isles. Do you think that would have a detrimental as you see fit effect on your ability to recruit? M r Quinn: That is correct. M r Quinn: Without a doubt Whichever way you look at the outcome of the surveys which have been carried out, The Chairman: You also touched on ia number of the numbers of doctors - just focusing on them for the occasions on the purpose of Hospice is to maximise quality moment - who would be prepared to become involved in of life for patients until they die, and, as part of that, there euthanasia or patient-assisted suicide, in percentage terms, were issues about not being service-led, as you described is very small, and if we were, as a jurisdiction, to legalise in other organisations, but veiy much being person-centred. that and to invite doctors to come here, whether or not they (Mr Quinn: Yes.) Would it be fair or unfair to characterise consider they are under a duty or not but they still see this the issues of autonomy, dignity and choice are ones that you hold dear? as a jurisdiction offering that as a treatment option, we are going to have difficulties. Mr Quinn: Oh, yes. We have difficulties, like the hospital, in recruiting. We, like anybody else, have to have in mind our control of The Chairman: But you stop the line at that choice to employment legislation, so we have got to look on-lsland intervene for a premature end of life? first and as a second resource we look off-Island. This will only damage our ability to recruit, and I do not think there Mr Quinn: That is correct It has got to be viewed in the will be any doubt about that whatsoever. context of what is on offer, and, obviously, legally, we would If we want to put the Isle of Man on the map, as far as not be able to offer euthanasia or patient-assisted suicide at this is concerned, we should put it on the map as being an this stage, so it is not there, and to take what is possibly a area that is investing in specialist palliative care treatment, ridiculous example, because I mentioned it, we do not offer not in this. a heart transplant But certainly, yes, the choice is there, within the context of what is on offer. Mr Anderson: Thank you. Maybe moving on to talking as a lawyer, now. Mr Rimington gave you an example of The Chairman: But if the law did allow - if we had the an extreme situation that the Committee was given, as Oregon example, take that as a scenario - that that choice an example at our last hearing - obviously, this example would be extended to patients, you do not foresee that was given in America. Do you not think that making the Hospice Isle of Man would embrace that? legislation for extreme cases is dangerous, and that in that particular set of circumstances, if the policeman felt Mr Quinn: No. Sorry, I do not see that we would. compelled to take action himself, would not that then be interpreted by the courts to make a decision on? The Chairman: Do you want to add a bit on why that What I am saying is: do you not think we cannot legislate would be the case? for every conceivable circumstance and are there not legal procedures that would flow from a decision being taken in Mr Quinn: Well, very simply, I have already explained those circumstances? to you that, from our point of view, we do not accept that we cannot get pain and suffering controlled to an extent that Mr Quinn: Right, if you look at that example, we can is acceptable to the patient, and if you look at our ethos of assume that, technically, he is guilty of manslaughter, at the maximising their quality of life, to enable them to live until worst if not murder. I suppose murder because he did form they die naturally, to actually introduce an element of choice the intent to actually end that person’s life, which his illegal; where they could hasten their death, or whatever, would be but let us give it manslaughter because he did not set out with completely contrary to our ethos. That is not something we the intention to do that Leave that to the courts to unravel, would offer.
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Mr J L M Quinn 100 KCE SELECT COMMITTEE, WEDNESDAY, 23rd JUNE 2004 Oral Evidence
The Chairman: If 1 can touch on the tension, between palliative care, through whatever discipline, and that there putting the client at the centre and their choice and their will not be cases of people whose pain, or whose fear of pain, autonomy, but not extending it to hastening their death, you would be so intolerable, so unbearable, that they would, as are only allowed to make certain choices but - we have seen in other jurisdictions, make informed requests for consideration for a hastening of their early death? Mr Quinn: But as I have said to you, it is in the context of what is on offer, and that would not be on offer. Their M r Quinn: I do not know whether you can draw a autonomy and their consent for treatment and their options, comparison with other jurisdictions, in that example, because their choices, can only be in the context of what is on offer. to do so you would have to look at what palliative care We do not offer, for example, resuscitation, and that is very services are available there. clear from the point of admission. It is not on offer. In one of the papers I have read, in Holland, for example, where we all know this was introduced, in recent years, The Chairman: I think perhaps some people would they have started to invest in palliative care services and, as be surprised that, primarily, Hospice is a cancer treatment a consequence, the number of requests for euthanasia and service. What cases would there be where people would not patient-assisted suicide have reduced significantly. So, that is be eligible to come into Hospice? What conditions might not an example of how... I cannot really give you a meaningful be able to be treated? answer to die question, other, than this is a quote from the experience of others. If you invest in palliative care, the Mr Quinn: For non-cancer patients, we would treat requests for euthanasia and patient-assisted suicide would people, as I have said, who are at the end of their journey, seem to be reducing, or would reduce. but as I have explained to you, at some length, as far as cancer patients are concerned, we are very much there, really, The Chairman: Cause and effect (Mr Quinn: Yes.) right from the start, from their initial diagnosis, and, to put What I would like to do, Mr Quinn, is turn to my colleagues, it very glibly, every other condition, other than cancer, we to see if there are any more follow-up questions and, then, are not there. perhaps, to yourself to summarise maybe. Mrs Hannan. Now, if you take an example - and here I am moving into an area that I do not know much about - but let us say you Mrs Hannan: Can I just return to: you mentioned about have a respiratory disease, and you are diagnosed with that the wishes of the family in regard to treatment for a patient respiratory disease, you are told it is going to get worse, and and in relation to a living will. The living will says one thing, you are told it is going to end up in your death, whenever that and the family wishes are something else, which is, in your is going to happen, I would like Hospice Care to actually get reckoning...I took it that you said that the family overrode involved sooner than simply the terminal stage, but we do the living will. not have the resources to broaden the care that we can offer, and it is as simple as that There are gaps in what we have on M r Quinn: No, I did not say that, Mrs Hannan. offer, and that is all I can say. We cannot do everything. Mrs Hannan: You did not; that is fine. The Chairman: But as far as the anecdotal advice you gave us, over 2,500 patients over 21 years - Mr Quinn: No.
Mr Quinn: Yes, a good 90-odd per cent of them would The Chairman: I think that exhausts our side, Mr Quinn. be cancer patients. Have you any summary you would like to conclude with?
The Chairman: Yes, and you told us that you believe Mr Qninn: I do not think so, Mr Chairman. that you have managed the pain in all those cases to the I think I would just like to say one thing: in the same patient’s satisfaction. way that you have commented, I hope that I did not take any questions, or whatever, as an attack against Hospice Care or Mr Quinn: To the extent that none of them have asked our services. I think, what I would like to say is that whatever for their death to be hastened, or for assisted suicide, or 1 have said, I would not want those promoting euthanasia to whatever. consider that I am doing anything other than putting forward our suggestion that the difference between us is simply the The Chairman: Might that be because it is not on offer means by which we treat pain and suffering. and, therefore, it would not be the general reality? I do not believe people promoting euthanasia are doing anything other than, again, realistically from their point of Mr Quinn: Right, well, then, you have got to come out view, but I believe misconceived, arguing that they do not of the Hospice Care experience, because presumably those really have any other motive. So, our point of difference is who are advocating euthanasia and patient-assisted suicide the means by which we deal with pain and suffering, and I are saying that there are patients out there asking for it I am accept that And I hope that nothing 1 have said would be telling you our experience here, for those under our care, is misconstrued, either. that they are not asking for it The Chairman: Thank you very much, Mr Quinn. I The Chairman: And just finally, I am sure we all think, while you get your papers sorted, we will have a five- concur that investment in palliative care is something to be minute comfort break and come back at 12.05 p.m. welcomed. However, would you tell us that, with the best will in the world, every case can be managed purely by Mr Quinn: Thank you.
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Mr J L M Quinn Oral Evidence SELECT COMMITTEE, WEDNESDAY, 23rd JUNE 2004 101 KCE
The Committee adjourned at 12.00 p.m. until 12.05 p.m., As, perhaps, a health warning at the outset when I first when Dr Huxtdble was called. came into the topic, I was, at that point - and I am talking about 10 years ago - quite pro voluntary euthanasia, in principle. But increasingly, on reading the literature and discussing with colleagues, including colleagues involved Procedural in palliative medicine, I became increasingly concerned that this was not the right way for the law to go. And by ‘the law’ The Chairman: We are on Manx time, so just five 1 am referring very explicitly to English law in England and minutes slow is not too bad) Wales, because that was the focus I took in the thesis. Dr Huxtable, welcome to the Isle of Man, I do not know There was a comparative aspect, so 1 did look at if this is your first visit here. Sorry you have not brought legislation in the Netherlands to some extent, but, primarily, better weather but I hope you have managed to see a bit of most of the comments I am about to make will relate to, as the Island. I see, English law as it currently stands, and some of the Dr Huxtable, first of all, we will do the introductions pitfalls with its current position. along the table: starting to my left is Mrs Hazel Hannan; Mr So, in a nutshell I do believe there is a case for reform, Alex Downie, as you can see; John Rimington; I am Quin tin but I do not personally, believe at this point in time there is Gill, I am the Chair, the Caairliagh; and Mr David Anderson. a case for pro voluntary euthanasia, or pro assisted suicide We are all members of the House of Keys Select Committee, reform. I prefer much more of a middle ground, if you will, and we have Mrs Cullen who is one of the Clerks. which 1 will try to sketch out in a moment We are being recorded for Hansard, so, perhaps, if we On beginning the thesis, I attempted to look at the main have any indication from our colleague that there are any ethical principles and precepts that influence the law in the difficulties, we could just be ready to stop and reconvene, area, and I arrived at, mainly, three, and I think these are but, hopefully, that will not be the case. three that are generally seen to exhaust the field, regardless Dr Huxtable, the form we have adopted with other of one's ethical stance on this issue, or in terms of ethics, witnesses is to offer you the chance to have an introductory generally. preamble, and then go into questions and answers, and then So, I noted, with regard to the earlier witness, that you to yourself to summarise, if that would be okay? referred to concepts such as respect for patient autonomy: that is clearly a key principle in English law, as it stands. Dr Huxtable: Yes, that is great. You referred, also, to the 'quality of life’ reasoning, and I will explore that in a moment. And there is also, 1 think, still The Chairman: So, perhaps, if you could introduce very influentially in English law, the notion of the so-called yourself, your background and qualifications, perhaps, and * sanctity * or ‘inviolability ’ of life. then we will leave it to you. Now, ‘sanctity of life’ sounds a rather theistic phrasing, it does sound rather theological, but English law does have Dr Huxtable: Certainly, yes. Well, many thanks for that underpinning, and some of the more Roman Catholic inviting me along. doctrines do appear to still influence the way English law I am Dr Richard Huxtable from the University of Bristol is. on the mainland, and my current post is a lecturer in Medical I think one starts to see that English law is attempting, Law and Ethics. It would probably help to give you a little as things currently stand, to cleave to all three of these, and, background: I approach this topic and my current post from as a result has resulted in rather a mess. And we can see the a law perspective, so I do actually have an LLB (Hons) mess, if I sketch out some of the answers we have currently Degree from the University of Nottingham, and it was during got, such as they are. that that I first became interested in issues around medical So, with regard to respect for autonomy, it is permissible law, medical ethics, and from that I undertook a Masters in and, in fact, it is mandatory, for health professionals to Socio-Legal Studies at the University of Sheffield. As part stand aside, if the patient says no to treatment, or ‘no more of that, I first looked into euthanasia in detail, as part of the treatment’, provided, of course, that the patient is competent dissertation component for that degree. Now, some commentators would term that a form of Thereafter, I developed that dissertation into a PhD euthanasia, which 1 am sympathetic to; some would term dissertation thesis at the University of Bristol, where I have that ‘passive voluntary euthanasia*. The patient is saying no, remained since 1996. So, I would say I have been looking with reference to the quality of life that they currently have. into this issue on and off for around 10 years or so. That sounds a bit like a euthanasia-style decision. So that is essentially my background; is there anything But, of course, with regard to autonomy, English law still further you require in that regard? will not go to the ultimate extreme and allow active voluntary euthanasia and/or assisted suicide, as recently seen with the The Chairman: Thank you, that is very kind. Diane Pretty ruling. The problem I have there, though, is that English law rehearses two pieces of rhetoric, really: it will say that euthanasia is murder and will be treated as such, and it will EVIDENCE OF DR R HUXTABLE also say that doctors and health professionals will not be treated any differently from members of the public. And I Dr Huxtable: Okay, great As I say, many thanks for found, on looking at as many of the decided cases as possible, inviting me along. I have jotted a few notes as to my position, so actual trials that have occurred, there have been, off the top and this is largely the position that 1 did adopt in the PhD of my head, I think it is seven health professionals prosecuted thesis. in this sort of domain, that are recorded prosecutions, and
Procedural House of Keys Select Committee on Voluntary Euthanasia - Evidence of Dr R Huxtable 102 KCE SELECT COMMITTEE, WEDNESDAY, 23rd JUNE 2004 Oral Evidence only one of those resulted in a conviction. to labelling it as such. I feel that, in terms of openness, So, clearly the second part of the mantra just does not transparency and the like, is not entirely legitimate. hold true, because anecdotal evidence, at least, would suggest So, I would bring that into the open, and also clarify a that doctors are doing this - perhaps not in great numbers number of the other laws that currently exist that still pose - but there are suggestions that euthanasia and assisted difficulties for health professionals and patients alike. For suicide are occurring. example, the doctrine of double effect, which I would assume So, that starts to suggest to me that, in this regard at least, the Committee is familiar with: there appear to be difficulties English law is willing to recognise an excuse can be created with a number of the cases in which that doctrine has been or perceived - in other words: ‘this is a form of killing, but relied upon. A number of the doctors in issue, it would seem, perhaps it is not such a bad killing, so we are going to excuse really, on a closer analysis of those cases, did not have the doctors if they do so, we are not going to take a really hard pure intention, and, yet, they were still enabled to invoke look at the facts, and we are certainly not going to prosecute this doctrine of double effect. or convict - very rarely*. I am thinking, for example, of Dr Bodkin Adams in With members of the public doing so - by that 1 mean the 1950s, and I do not know if the Committee is aware relatives primarily assisting their relatives to die in some of suggestions that Adams actually was a serial killer, way - you find that there are very many cases. I looked at he was allegedly a mass murderer. The prosecution was over 100 or so, in which, again, the rhetoric of prohibition is initially brought... is it worth me dwelling on this point? not actually being given substance in fact, because most of Would that be helpful? (Mrs Hannan: Yes.) (Mr Downie: the prosecutions will be for murder, but in virtually all bar, Interesting.) I think, approximately four cases I found, murder is not the The prosecution was initially brought because Adams had ultimate conviction. A conviction is made, but it is usually inherited under the wills of two patients. He was prosecuted made for a lesser offence, such as manslaughter by virtue over the death of one patient, with the suggestion that if there of diminished responsibility. was a conviction there, they would prosecute over the death Many of the legal commentators, and some of the ethical of the other. He had inherited a chest of silver and a Rolls and medical ones, acknowledge that this is a fudge, that many Royce from this patient And the judge, although he could of these defendants are not enduring or suffering diminished not formally take into account motive - because murder, as responsibility - whatever that means, and there is a big it is framed, is all about intention, so what you are aiming literature around that in itself. So, again, we appear to see at rather than why you are aiming at it - he did refer this to notions of excuse entering into English law, in the way that the jury and said this is too ‘paltry a reward for a respected these cases are dealt with. GP to risk* the death penalty at that point With regard to the ‘quality of life’ reasoning that I said I Then in 1983, at the point at which Adams died, and the would return to, I think that that sort of reasoning is entering law of defamation no longer applied, the Chief Constable into English law, although some of the judges would deny who investigated him said that the prosecution case was this. I am referring, in particular, to some of the cases where hampered by blunders throughout and that Adams actually treatment has been lawfully withheld or withdrawn from very inherited under - 1 think it was - 138 wills, throughout his young children, and also adults, in a permanent vegetative practice. So, the suggestion was very much that this was a state, such as the case of Anthony Bland. The judges there serial killer, albeit allegedly, the serial killer who introduced bandied about notions of the ‘sanctity of life*, but deemed the doctrine of double effect which is supposedly all about that an inabsolute principle, but resisted, at least on the pure intentions, into English criminal law. face of it, the notion that this was valuing or a valuation of So, I, on that point would prefer to see, actually, a Anthony Bland’s life. They resisted the message that this comprehensive Act of Parliament dealing with all of these life was perhaps not a life worth living. issues: withholding, withdrawing, double effect when it Well, I would suggest, and I think a number of applies, when it does not apply, what it really means, what commentators from varying perspectives would suggest, is a pure intention, supported by a code of practice, and the that sort of reasoning was, really, what was occurring there. like - comparable models would include the Mental Health So, one has to query how appropriate that is, and how far legislation, for example, where there is a code of practice; we ought to go with ‘quality of life’ reasoning. the Human Fertilisation and Embryology legislation as well, So, that is just a sketch of some of the problems, as I have again, a code of practice, and also advisory bodies exist seen them, and, as 1 say, a number of other commentators, A related concern I have is that this is an area where whether pro-euthanasia or anti-euthanasia, have also seen the area is replete with guidance documents - you have them. documents from the nursing bodies, the doctors’ bodies, I What I would currently favour, particularly in view of believe the dieticians in the UK are working on a document’ some concerns I have with taking in one of these principles as well - and, although they are generally uniform, one can too far, I would currently favour a middle-ground position, perceive slightly different phrasing in some circumstances, where we at least clarify what is really going on. there are some contentious documents, including the one One of the major proposals I would make, and I will relating to ‘do not attempt resuscitation’ orders. actually be writing about this over the summer, is for a So, I would suggest, with,appropriate consultation, with reduced offence, or partial defence, if you will, of mercy every involved person, including lay persons, that it might killing - or assisted death, call it what you will. It will need be better to remove all this inconsistency and ad hocery, and specification, but the idea would be that we would bring into have one uniform system. I think that that is perhaps a little the open what is currently going on behind the scenes, and long-winded, but that is my position, in overview. that which is actually not sufficiently well promulgated on at the moment - that is, that the judges are tacitly creating The Chairman: Just on that point: can I ask you what this mercy killing offence or partial defence, but are resistant your assessment of the professional and political will
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Dr R Huxtable Oral Evidence SELECT COMMITTEE, WEDNESDAY, 23rd JUNE 2004 103 KCE
commitment there is to consider legislation or codes of to defend that if he were prosecuted. practice, as you have just mentioned? So, ray reading of that was: he would be prepared to say, ‘Voluntary euthanasia is perfectly permissible. The law is an Dr Huxtable: The evidence I can draw on - and this is ass in this context, and I should not be prosecuted’. not strictly from bodies like the General Medical Council On arriving in the courtroom, however, his defence was and the British Medical Association - refers to a number of very much one of the doctrine of double effect, and the surveys that were published in the Journal of Medical Ethics judge did accept that A close look at the evidence, one of that point to health professionals of varying disciplines my colleagues has suggested to me - and this is a colleague saying that they would prefer to see a consistent set of who has worked in palliative medicine - suggests that the GP guidance, so I am more drawn along that information. may not really have known what he was doing, with regard As I understand it, they were relatively small scale to morphine and diamorphine, so that may raise an ancillary studies, but it might be an area for further research, in fact, issue with regard to appropriate training in techniques in particularly approaching professional bodies themselves, palliative medicine. and seeing how they would favour it As I say, I have to be cautious in my phrasing, as much If I could add one brief point on this, there was an of this relies on the contemporaneous media reports, which interesting - now, I think I can do this without the document are by no means comprehensive. - reference in a paper on the advent of clinical ethics committees which are becoming increasingly established Mr Anderson: Dr David Moore is actually my uncle, but across the UK, and in that paper it was suggested that such I do not think it is the same one, fortunately! (Laughter) So, guidance documents would actually assist on the ground, and we will move swiftly on. .clinical ethics committees could have a local input in giving You have had no personal experience yourself in local substance to such documents, so there is a feeling of medicine; it is just purely on lecturing on... ownership of the moral and legal principles at stake. Then there was a rebuttal in one of the papers saying, Dr Huxtable: Yes, that is right ‘We do not really need further guidance from a clinical ethics committee, or even further guidance documents; they Mr Anderson: Right, nothing from me at the moment say enough’, and they footnoted and referred to a document thanks. from the British Medical Association, which claims to be pretty comprehensive, but pretty clearly early on in that Mr Rimington: I think you joined us, at the back after document it does say ‘the law is not clear in this area hence I had given my question about the policeman in America: this document’, so we are kind of going in circles, I would did you hear that? suggest We are being told the documents help because the law is unclear, but the documents are saying the law is Dr Hnxtable: No, I did not. unclean it is almost tautologous. Mr Rimington: For fairness, I will repeat it to you. This The Chairman: And the political will to promote this was put to us by a previous witness, speaking from an ethical sort of legislation: do you think that is around? point of view, or raising the issues from an ethical point of view, of a lorry driver being trapped in the cab of his lorry Dr Huxtable: I would anticipate, once I publish on this, when it was burning, he could not possibly escape, and the resistance from almost all sides, particularly with regard to policeman, being in America, was armed. The window was the mercy killing offence proposal. I feel those in favour open: he asked to be put out of his misery - ‘Don’t let me of voluntary euthanasia would feel it is a fudge, it is just die like this!’ What should the policeman do? moral cowardice, it does not go far enough. The professional But with the previous witness I did not ask him: there bodies might feel that it actually undermines their protection was a further question, actually, that he had posed, which was of life. what would happen if the window was actually wound up, But that is just a prediction: 1 could not say for certain so although he could see the policeman and was shouting at where they would stand on that him, he could not tell what he was saying. What should the policeman do? So, can I just pose those two at you. M r Anderson: You mentioned this incident with this doctor, in the 1950s, I think it was: have you got any modern- Dr Huxtable: Excellent questions! (Laughter) I will not day examples where a doctor has given treatment with the have excellent answers, I am afraid. double effect and has been prosecuted as a result? I think I will refer back, in a vain effort to fudge the answer, to a comment that Mr Anderson made earlier about Dr Hoxtable: Yes, there have been a number of more the nature of hard cases making bad law. 1 would see that recent examples. And I need to be appropriate in my as one of the very hard cases, and I think, very much, my phrasing, personal humane response would be to put the person out I am also concerned about a more recent prosecution in of their misery. the late 1990s of a GP based in Newcastle, Dr David Moore, But that is my difficulty: as I say, at the outset of my who, as I understand it, from the contemporaneous media studies, I was very much in favour of voluntary euthanasia, reports - and that is, unfortunately, what I need to rely on, because 1 was swayed by such hard cases. Now, whether there is no published transcript of the trial - Dr Moore said that is an entirely humane response in itself to say, ‘Okay, I in the local media, in Newcastle, that he had killed 300 can see your plight, but I am not going to allow it, because patients throughout the course of his career and, again, as I it would set a rule and the rule is dangerous’. understand it he allegedly stated that he would be prepared I feel there is a difficulty there in terms of, as I say,
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Dr R Huxtable 104 KCE SELECT COMMITTEE, WEDNESDAY, 23rd JUNE 2004 Oral Evidence common humanity, but, having said that, I feel that there M r Rimington: Yes, everything helps. We are swimming are dangers associated with: if we make an exception in this in a difficult sea, and so all views and opinions are useful. case, how many exceptions are we about to make? And I do believe, actually, somebody else - not to the same In that regard, maybe I could raise another very difficult extent, and so well as yourself - had referred to that case, as case that is one that, again, has sharpened my thinking on a previous witness, now that you have explained it. this, and has increased my resistance to any form of legalised One of the things you did talk about was: there are a voluntary euthanasia. This was a case from the Netherlands, number of individuals - relatives, family members - who that I am not sure if the Committee will have had raised yet have helped their loved ones to go, and have been prosecuted. - as I understand it, it has not been very widely reported in Now, presumably you will have seen the evidence put this country, and we are still relying on the Dutch reports. forward by the Voluntary Euthanasia Society that, of those It is the case of Edward Brongersma; his GP was Dr Philip people who had been prosecuted, or legal action had been Sutorius. taken against them, for that very action - what they would consider a mercy killing, if you like - a significant proportion M r Rimington: It does not ring a bell. of those people, those family members had then suffered trauma, (Dr Huxtable: Yes.) to quite a high degree, and that Dr Huxtable: No. Brongersma was a retired senator, had led to suicides, in some cases, but also just that general in fact, who was, I believe, 80 years of age. He was ‘tired level of trauma. of life* - that was simply it. He had no physical or mental Now, can one lay that all on the legal process - the suffering, as such. As I understand it, he had been assessed trauma of going through that legal process? Well, there are by psychiatrists: they found no underlying mental disorder, two traumas involved, and I am just feeling for your view and it was felt that this was just a patient who was tired of on the balance. Obviously, to be involved with somebody life, and he said such things as, ‘death has forgotten me*. who is dying, under any circumstances, with a loved one, He approached his GP, Dr Sutorius, who did actually is traumatic; to have to be party to taking active steps provide pills which Brongersma later took. And it was felt yourself would be a further trauma, and, obviously, then any by Sutorius that he had complied with the Dutch 'due care* involvement on a legal basis after that would be a further criteria, because this was, in his words, 'unbearable suffering trauma as well. without prospect of relief’. It was suffering in old age, he I do not know: how do you see that conundrum, and how felt death had forgotten him. There is no way that medicine would your proposals deal with that? could provide any alternative^ or any way of alleviating that suffering, but perhaps counselling support and the like could Dr Huxtable: That, again, is a very good question, and have been provided. one that I have attempted to give a lot of thought to, and I But it was also at his request, so it did look, prima facie, have been concerned that my proposal would keep in the dual like it complied with all the requirements, particularly as message of: ‘This was wrong, but it was not too wrong’. And there was reference to terms such as ‘unbearable suffering’. the ‘this was wrong’ component, undoubtedly, will add to Suffering is notoriously subjective: I would suggest that it the trauma that will already be there from the involvement need not be tied to a medical complaint. in the person’s death, in a loved one’s death. And that is the difficulty I have. Now, in the event, the What I would hope to propose is exactly what some of the courts in the Netherlands went back and forth on whether judges, but not all of the judges, are currently doing in these this was a permissible operation, or use, of the legislation, cases: I would say, in these cases where it is genuinely made and they, ultimately, declared that this was not permissible, out it was a well motivated mercy killing, with appropriate and that this could not occur again. hoops jumped through, if you will, they are offering a But that is not to say that Sutorius was struck from the sentence such as probation with a counselling component register or imprisoned; rather, effectively, he was chastised, Now, quite how good such services are I do not know. and then allowed'to go back to practice. I do not feel qualified to say, and this is part of the thing I Now, as I say that is as I understand it, and this is from a will be looking into, later this summer, just to see if that is colleague who is Dutch and has accessed some of the, again, at all feasible, or if, in fact, they should be moved into a contemporaneous media reports, so that may not be the entire slightly different box. stoTy, but I think, on those facts alone, it is troubling, because But I still feel that something can be done to respond it makes me go back to the outset and challenge what is going to that, and the police could be appropriately briefed with on. If we are, for example, to legalise voluntary euthanasia, regard to it. It has interested me that quite a high number of then that must be premised, primarily, on respect for patient the media reports covering these cases, where the defendant autonomy, but also due regard for quality of life, and the has been willing to speak to the media, they have said, ‘We patient’s assessment of their quality of life. were dealt with fantastically by the police, Social Services In order to put that in law, you have to use phrases like and the like*. ‘unbearable suffering’, ‘persistent request’ and the like, so So, I would hope - it might be rather idealistic - that I would suggest that any legislature that is looking at the ways can be designed and, actually, put into practice that issue, including the Committee here, of course, would need will actually minimise any such trauma. to think at the outset: ‘What are we going to disallow? Where I realise it does not go to the full extent of decriminalisation, are we going to draw boundaries? Are these boundaries or full permission. actually going to stand up to critical scrutiny, or are they just going to be arbitrary stops on the road to full respect M r Rimington: So, in fact going to that extreme, the for autonomy?’ trauma is not by the way, generally speaking, the police So, sorry to answer your hard case with another hard have handled the issue, but just by the fact that it is being case! Is that a helpful answer? handled.
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Dr R Huxtable Oral Evidence SELECT COMMITTEE, WEDNESDAY, 23rd JUNE 2004 105 KCE
Dr Huxtable: 1 think the trauma is part of the whole Mrs Hannan: You inferred it, David! process, no matter how well motivated and appropriate the police might be, in the way that they deal with the accused, Dr Huxtable: I will do, certainly. equally no matter how well the judges and the courts deal with the accused, there will be some trauma attached to that Mr Rimington: Thank you. and that may, perhaps, be unavoidable. As I say, it is something that I do want to look into further, Mr Downie: I have a couple of questions I wanted to just to see if this is a viable proposal, but that, unfortunately, ask you. You intimated, during your dialogue with us today, will be a bit later this summer. that this is an area you have been involved in for some time, and then you broadened it out by suggesting that there were Mr Riimngton: And I presume you will - 1 am sure you people in the medical profession who had, for whatever will - have seen Lord Joffe’s Bill, or the new version of it: reason, assisted people to die. And you thought that when what do you find difficult or unacceptable in that? the issues came before the courts, they were perhaps treated in a much more lenient manner Dr Huxtable: Unfortunately, 1 do not have a copy in Now, that does not get us away from the situation that front of me, and when last 1 read it, it was a few weeks ago. the BMA, the General Nursing Council, the Royal College I think there are concerns related to the terminology - just of Nursing are all totally opposed, at the present time, to how we are going to set this down and how the lawyers are any form of euthanasia, or assisted dying. Can you advise going to interpret it - it sounds like distrust of the lawyers, I us what consultation or dialogue you have had with any am afraid, from someone legally trained, so 1 should be very of these organisations? And would it not be a fact that any careful, indeed - but I noticed, also, in the remit that I was person given a suspended sentence, as a doctor, for assisting sent along, the remit of the committee, that similar sorts of someone to die, would automatically be struck off and not phrases recur, so could I perhaps refer to those phrases? allowed to practice medicine again in this country? It is phrases like ‘enabling a competent adult* - who is competent? Why just an adult? If competence and autonomy Dr Huxtable: That - and rightly or wrongly, again is the key, then why not extend it to the minor, who is also opinion is very divided - if I take the last part of your perfectly competent to take decisions with regard to their question first - actually was not the case with the one health own health and welfare. professional to have been convicted, a Dr Cox, ‘Suffering* is there again, 'as a result of a terminal or serious physical illness’ - well, I query what ‘serious* is. Mr Downie: Now, is that pre-Shipman or post- There has also been the very flippant suggestion in some of Shipman? the literature that ‘life is a terminal disease*-now, of course, that is far too flippant, but it does begin to show how open Dr Huxtable: Pre-Shipman. to interpretation all of these are. And, perhaps, they could indeed be made workable along certain lines. Mr Downie: Right My concerns are that some of the phrasing that still recurs, for example, in the Netherlands... I understand that Dr Huxtable: Yes. He received a suspended sentence: opinion is split as to whether the Netherlands is a safe system suspended for two years, it was a two-year sentence. The or an unsafe system. There is enough there, at the moment, General Medical Council admonished him and - I think to concern me, but, again, I will actually be going to the this is the key - ordered him to undergo some training in States, later this summer, to look into Oregon in a bit more palliative medicine. detail, because, at present, 1 do not actually have enough I think that is rather important, because — I am sure the information on the Oregon system. Committee will have heard of this case, already - the doctor So, it could well be that my practical objections might there had used potassium chloride, which has no therapeutic drop off; my principled concerns would still remain, though, property, it could only have been intended to kill. I think. But we would have to see how far, for example, we So, sorry that was the latter part of your question; the want the principle of autonomy to go. former part -
Mr Rimington: My very last question is, then, if you are Mr Downie: What I want to know is: what consultation going to Oregon, and we are not - ? (Laughter) or dialogue have you had with the BMA or any of the other organisations in the medical care profession? Dr Huxtable: Well, I will actually be in New York. Dr Huxtable: Right sure, I have not had a direct dialogue M r Rimington: Oh, right, okay. (Interjection by Dr with them; I have discussed some issues with them, but in Huxtable) Could you, if you do glean any information from fact, not relevant to today’s discussions. whatever - both points of view, we are not... whatever - we Rather, I have gleaned their view from their professional would more than welcome - publications, their websites and the various documents, for example, the BMA’s - 1 think it was - 2001 project on Mr Anderson: Could you take Mr Rimington with you? assisted suicide, and there they, basically, reaffirmed their (Laughter) opposition to this being legalised. But I have not had a direct correspondence with them. Mr Rimington: ‘And leave him there*! (Laughter) Mr Downie: The dilemma that would face us I think that Mr Anderson: I didn’t say that! (Laughter) if we did bring in legislation which made assisted suicide or
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Dr R Huxtable 106 KCE SELECT COMMITTEE, WEDNESDAY, 23rd JUNE 2004 Oral Evidence euthanasia available on the Isle of Man, I would say the great assist a person in suicide. majority of our doctors are members of the BMA. If a way was found to introduce a system where assisted dying could come in, surely all that raft of legislation dealing Dr Huxtable: Certainly, yes. So that could put them in with those elements would have to be addressed, as well. a very difficult position, indeed. I wonder if the BMA would accept this, if the law were Dr Huxtable: I think that is very true. If I could go back to be enacted and had a carefully phrased conscientious to the initial part of your question: it is a rather big question, objection clause, or the like: perhaps that might get round and, with the greatest respect I am probably not qualified to some of these difficulties, but the BMA would need one tell you the exact evolution of the law in this regard. I will itself, as well, I think. try and draw on the opinions of a colleague who I think is now, actually, in the States, John Keown, who is very much M r Downie: Legislation on the termination of pregnancy in the ‘sanctity of life1 tradition. is different in the Isle of Man than it is in the UK. He writes in opposition of rulings such as the ruling in the Anthony Bland case, and he feels that the sanctity of Dr Huxtable: Right. life doctrine has been there, as a cornerstone of English law, since time immemorial, and yet it has been chipped away, Mrs Hannan: It does not exist considerably, by two rulings in the early 1990s: Bland itself, but also a ruling in the case of a severely disabled neonate, M r Downie: It is much stricter in the Isle of Man to have a in the case of re J, which was reported in 1990 or 1991, termination, and there is quite a significant opt-out clause. depending on which law reports you look at And he feels there the judges were going against the ‘sanctity of life’ Dr Hnxtable: Right, so it might well be a similar clause doctrine and adopting ‘quality of life’ reasoning in the, as that we are adopting in this proposal. he would have it forbidden sense of judging that life to be worthless or less worthy than other lives. M r Downie: I just wanted to broaden out your views So, I would have to look at the original sources, I do on the Joffe Bill, really, and, obviously, it is going to be in not know how much he refers to previous legislation and for a fairly rough ride. I would think there are more radical the like, but his position is, really, we began to chip away thinkers in the Commons than there are in the Lords, anyway. at this doctrine in the early 1990s, and we have not really Have you any observations you wanted to make on it, or, if stopped since. you were in Joffe’s position, and you wanted to get something And I am sure that he would say similar things about the through, would you tackle this another way, or go about it ruling of the conjoined twins, Jody and Mary. But I am not from another direction? aware of his opinions on that ruling. So, his feeling is very much it is a recent erosion. Dr Huxtable: I think, as a model of that sort of legislation, it is a pretty good model. It seems pretty standard, so far as M r Downie: Thank you. No more questions, thank my reading of it goes, and my comparison with a number you. of the other models out there. In terms of its likely success, I can only speculate, and I Mrs Hannan: When you talk about the ‘sanctity of life’, have had this discussion with a number of colleagues back whose life? and forth, back in Bristol, and elsewhere. And opinions have, interestingly, varied: there is one colleague, who Dr Huxtable: It can be a very complex doctrine, and I will not name, who actually felt that this had a strong this is the difficulty I have with some of the academic chance of succeeding. Now, this was some months back; commentary out there from John Keown and John Finnis but I am aware, for example, that Baroness Ilora Finlay is and the like, in that they will occasionally give the Roman on the Select Committee looking into the Bill, and she will Catholic presentation of it, and sometimes argue, but be, undoubtedly, very much opposed. She is a specialist in occasionally assert, rather than argue, that that is the version palliative medicine. that English law adopts. And yet, what I find very interesting about the I think the version English law most safely adopts is the composition of that Committee is that it would appear to be version in the crime of murder, so: do not intentionally cause roughly a tripartite split, really, between those pro, those anti death, certainly by act but arguably, by omission, if you are and those seemingly unconvinced, as things stand. So, it is under a duty not to cause that death - so, if you are under a likely to be a very interesting Committee tHat is sitting later duty to intervene and rescue. this summer, I think, or perhaps early autumn. It, in English Jaw, will apply strictly speaking upon point of birth: that is when legal personality is granted. That is not ‘ Mr Downie: Given that you have spent a lot of time to say that for pre-birth, there is not some protection: there researching subjects like suicide, and I suppose there is are protections in the Infant Life Preservation Act and the an element of the sanctity of life, in all of that, I wonder if like, that grant some value to life pre-birth, but generally you could explain to us - now, if you cannot do it, say so speaking, on point of birth, the doctrine kicks in. - how, over generations, this objection to a person’s right to In the Roman Catholic presentation, it is stated as ‘do not be able to do what he thinks fit with his own life, you feel, intentionally kill’ and ‘do not intentionally allow to die’, so has come about, and how, legally, this framework has been that looks like quite a rigid, absolute prohibition. And what built up? When you look at it you do not actually own or we see, with the Anthony Bland, ruling in particular, is the have decisions in your own body; it is applied to the Crown judges there refer to the fact that this was intended to end or the Queen or the state. It is also a very serious offence to Anthony’s life, so we see there the chipping away at the
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Dr R Huxtable Oral Evidence SELECT COMMITTEE, WEDNESDAY, 23rd JUNE 2004 107 KCE second part of it, the ‘do not intentionally allow to die’. sanctity of life tradition. Does that answer the question? Interestingly, in the latest draft of that Bill, which I understand is before Parliament this week, in fact, the Mrs Hannan: So, really it is the state, you are saying, advanced directives/living will section is back in, so, I do that- not know if this is to suggest that some of those groups are now actually happy with the phrasing that has been adopted, Dr Huxtable: It is a state interest or whether it is felt that the public has gone in the opposite direction, and now wants this expression of autonomy. Mrs Hannan: The state interest. A point Mr Downie I could not say for sure, but, as I say, there are some was making, is it the head of state, or the law or...? I mean who feel, in that tradition, that it is a violation of respect the law comes from the head of state: that is basically what for life. you are saying? Mrs Hannan: So, if a doctor knows that a patient has Dr Huxtable: I would say so. I mean it is a very difficult got a living will, I think the case was put to us, before, by the one, particularly in a democracy, to determine whether that previous speaker, that someone is elderly and in a nursing is an appropriate principle, in terms of justice and the like. home and suffers from mild dementia, knows his family, Ought we to defer to what some might say is a minority and is quite comfortable, is 79, has a living will, made a view of the value of life? Particularly, if one refers to the... I living will when he was compos mentis at 70, but if he got would say, the opinion polls would seem to suggest that there pneumonia, what would the situation be? What do you think is quite a groundswell of support for voluntary euthanasia. the situation should be? So, maybe, our views on the sanctity or inviolability of life axe simply outdated; they are a religious throw-back that Dr Huxtable: The short answer is I do not know. Recent most of the community does not actually adhere to, or hold evidence actually conducted by a colleague of mine in a to, these days. recent survey, in Bristol, he drafted a hypothetical living will, In that regard, I briefly say that I have concerns with and distributed it to a range of health professionals, and this some of those opinion polls, because I do feel they rely on was a paper published in the British Medical Journal around the hard cases. So, polls will be conducted shortly after a Christmas time, just gone, and half the health professionals ruling like Diane Pretty’s, which was a very difficult ruling, said it ought to be honoured, and the other half said it ought a very difficult set of circumstances there: that was, I felt, not to be honoured. one of the hard cases. So, although I am, actually, pretty much in favour of But of course, the public sympathy is engaged and so advanced directives and living wills, in principle, I think there are issues of timing, and also, occasionally, there are they are a good expression of autonomy, and they might ward issues of how the questions are actually framed. This, again, against potentially invasive treatment at the end of life. might sound a little glib, and I do not mean it to sound too Having said that, it is notoriously difficult to interpret glib, but one sees something along the lines of: ‘do you these, so I hope that is an acceptable answer to your question. want to die in horrible, writhing agony; or would you like I do feel there are notorious difficulties with interpretation. to take a nice pill and go gently to sleep?* And it is that sort of phrasing - it is never that extreme, but you can feel that Mrs Hannan: It is just that the BMA in their guidance there is a push, occasionally, to actually load the answers have, actually, said that in circumstances such as that: that are being given. ‘where a patient has lost the capacity to make a decision, but has a Mrs Hannan: Right, when you were talking about valid advanced directive refusing a life prolonging treatment, this sanctity of life and decision making, what is the position must be respected’. of living wills? That is section 10(1). Dr Huxtable: That I find a fascinating area. 1 attended a Dr Huxtable: But again - now, I am taking issue with the talk from, in fact a Roman Catholic scholar some years ago - it might help the Committee to say I, actually, am not of any BMA-they are using words like ‘valid’, and it all hinges on what they mean by a ‘valid advanced directive’. One sees, faith, I have no faith, I am an atheist - but I was attending in the cases that have already been decided in English law, this to just get a broad range of views on the topic, and the that ‘valid’ has been taken to mean competent, informed, speaker, very firmly, said, from the perspective of the sanctity of life doctrine, living wills amount to a form of euthanasia, voluntarily made, and applicable to the circumstances that have, subsequently, arisen. So, the patient might do one of they amount to a form of passive euthanasia. You are saying in advance: ‘let me die when I get into a terrible state*. two things: have a very brief living will, half a page, or even an orally expressed one, while watching a TV documentary, Whereupon - 1 think it was a priest in attendance - he put his hand up and said, ‘I have got a living will, and I am or they might have a 200-page one, that just misses out the entirely happy with it*. So, that is within one tradition: you particular treatment that actually the doctors now wish to saw radically opposed opinions. give. Do we honour the ethos of it or do we look at the fine As I understand it, from discussions I had at the time, print and become quite legal in our interpretations and say, not documented discussions, when the Law Commission of ‘Well, antibiotics are missed off, so we can give them’? England and Wales proposed that advanced directives/living As I say, I think it all comes down to the major difficulties wills be put on a statutory footing, it was actually withdrawn of interpretation. from the draft Bill, at that point in time, because there was such opposition from a number of groups beholden to the Mrs Hannan: So, in a way, you are saying that living
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Dr R Huxtable 108 KCE SELECT COMMITTEE, WEDNESDAY, 23rd JUNE 2004 Oral Evidence wills are not worth the paper they are written on. seemed to be the primary cause of her suffering, on ray understanding of the case - he had attempted a number of Dr Huxtable: Sometimes, yes. means, but, obviously, to no avail, and then he injected the potassium chloride, and the patient died somewhere between Mrs Hannan: Can I ask about consent Do you know a minute and a minute and a half later. anything about consent, in hospices, maybe? Should there Now, the argument that was seemingly accepted by the be an informed consent, if someone enters a hospice, or court by virtue of the attempted murder, as opposed to the palliative care, or whatever? murder charge, was that in that minute to a minute and a half, the natural causes had intervened and actually caused Dr Huxtable: Absolutely, if the patient is competent the patient’s death. So, they could not establish causation. yes. And, again, 1 am approaching this from the English There is a second part to it, though, in that, again, as I legal perspective, so I would follow the road English law understand it, the patient had actually been cremated by the has gone down: that we look for an informed, competent and time of the charges being brought; or by the time of the trial, voluntarily deciding patient for admission, treatment and at least So, maybe they could not have actually established the like. But if they are not so competent, then we allow the causation of death, hence the attempted murder charge. decision to be taken by reference to their best interests. I am a little cynical about it, because I suspect one Now, consent has become a bit tricky recently because could have proceeded with a murder charge, but I feel the we have the Mental Incapacity Bill before Parliament, which reason they substituted the lesser charge is because they may well mean that at some point soon, proxies are likely to did not want to expose him to the mandatory life sentence be appointed. So, a patient can nominate someone in advance of imprisonment And that perhaps, is a related reform; of their incompetence to say; ‘my husband’, et cetera, ‘will in fact, it is one I argued about in the PhD thesis, that we take health care decisions for me, on my behalf, once I am could actually do away with that mandatory limit of life, no longer competent’. and actually have a scale, life as a maximum, instead of life That, in itself, raises a host of issues, but I would hope as a mandatory. - and 1 do, actually, quite like the phrasing in the Mental Incapacity Bill - that that is a rigorous enough system, that M r Downie: Some countries have culpable homicide do there will be safeguards in place, such as appropriate couit they not which overcomes that monitoring of the decisions that are taken. Dr Huxtable: Yes, Mrs Hannan: Right Deaths in hospice: do you think one doctor signing a death certificate in a hospice is enough? The Chairman: Was there any suggestion in the defence, or in that case, that Dr Cox had been requested by the patient Dr Hnxtable: I actually do not feel qualified to answer with arthritis to intervene in that way. that one. I would not want to give an ill-considered answer to that if that is okay Dr Huxtable: Yes. There were persistent and very loud requests that they do something - ‘they’ being the healthcare Mrs Hannan: You mentioned the case of the unbearable team - to put her out of her agony, and this was from the life, and the doctor providing medication. That was decided, patient. And it is notable that there was no suggestion in was it, or at least the doctor gave the medication knowing the ruling, or afterwards in the GMC hearing, that he was that it would end that person’s life? ill motivated in any way. He was, arguably, by virtue of the palliative medicine training he needed, not fully versed in Dr Huxtable: Yes. techniques of pain control. But that said, it is notable that the patient’s sons were there, throughout the trial, in support Mrs Hannan: So, it was not just any old medication for of the doctor. So, there was no suspicion of... depression or...? The Chairman: So, that is a world apart from Dr Dr Huxtable: No. I, unfortunately, could not say exactly Shipman who... what the medication was, but it was medication designed to be taken by the patient to end their life. So, it was an Dr Huxtable: Absolutely, yes. assisted suicide. The Chairman: Just so we had some clear water between Mrs Hannan: I think that is all I have got for now. 1 linking those two cases. might find something else in a minute. Could I ask you what are the differences*.. I am not quite clear what the difference, as you perceive it, is between what The Chairman: Dr Huxtable, could I ask, you mentioned you propose as a reduced offence of ‘mercy killing’ and the case of Dr Cox, and that was pre-Shipman. What was ‘voluntary euthanasia’. Dr Cox convicted of? Dr Huxtable: Well, and this is perhaps the most Dr Huxtable: He was convicted of attempted murder, controversial aspect of what I intend to propose. As I say, and, in fact, I find that a rather difficult judgment in itself. 1 much of this is based on what I proposed during the PhD can fully see why the court did this, but, if you will permit me thesis, and that is almost the groundwork for the study that to be a little cynical for a moment what actually happened will come later this summer. with the patient who, it is important to know, had arthritis, What I actually noted, and what would appear not to have and that was why she had such unbearable suffering - that been commented on much in the legal press, in particular, is
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Dr R Huxtable Oral Evidence SELECT COMMITTEE, WEDNESDAY, 23rd JUNE 2004 109 KCE that the public fixate on voluntary euthanasia and, I think, Now, I am not convinced in either direction on this, yet, rightly so, but the judges are not always encountering cases so I would need to see more evidence from, for example, of voluntary euthanasia; they are, on occasion, encountering Oregon. That is what I hope to access in New York: with cases of involuntary euthanasia. And it may well be that these regard to whether actually palliative care is suffering there, are cases of voluntary euthanasia, but the media report did not whether patients are not receiving appropriate pain relief actually have access to whether or not there was a request So, because they are pushed into the euthanasia filter, if you by ‘involuntary’, I am saying we have, at least no evidence will. of consent or a request from the person in question. However, as I say, in theory, I would hope that the two The concern, depending upon one’s perspective with could exist together, and there could be a palliative care regard to euthanasia, is, actually, the judges sentence exactly filter such as in Lord Joffe’s Bill, which has got something the same in cases of involuntary euthanasia, as in cases of to that effect voluntary. So, this notion that autonomy should take priority, so, in fact, autonomy ought to be accounted for in voluntary The Chairman: Thanks, that is it for me. David? euthanasia, so we have even lesser sentencing, is actually thrown out the window. It would appear the judges equate Mr Anderson: I am okay, thank you. the two. What I would hope to do, under my proposal, but we will Mrs Hannan: Yes, could I just ask: in your research have to see how it works out later this summer, is stipulate have you found any reason why people who actually support that if it is a voluntary one, of course, it is a lesser sentence, voluntary euthanasia do not commit suicide? a lesser offence. If it is involuntary, or there is no evidence of a request, or the witnesses simply are not believed, with Dr Huxtable: No, I have not No, that is a very interesting regard to that, then the criminal law should be actually suggestion, in a number of ways, in particular, if I go back to more concerned, if we are going to take autonomy seriously the Brongersma situation: we should recall there that this was enough, but not go to the final extreme of legalising. a seemingly perfectly fit and well person who was seeking assistance from the doctor, and one has to wonder why he The Chairman: It is a step on that road - was seeking such assistance. Is it because the system was there, so it gave his suicide, which some would frown on, a Dr Huxtable: It might be a step on that road, and that veneer of respectability, then? I do wonder that is one thing, I think, we need to keep under review and Also with regard to those in favour of voluntary by ‘we, I certainly mean me, in looking at this, and once I euthanasia, perhaps the best suggestion I have seen so far is have a proposal drafted up, I would be more than happy to actually from a medic, writing on the matter, that as it tends send it to the Committee for their comments. That would be to be the philosophers who are the big fans of this, why not fascinating and very helpful for me; but I intend to present just let them be the assistance? So, do not make the medical it across the country, in particular, and see what people feel. profession the euthanasiasts; rather appoint the John Harrises So, it would be interesting to see what the ethicists feel, in of the world. Now, quite what John Harris would say in terms of whether it is a moral fudge, and what the lawyers response to that, I do not know, but I will be seeing him - feel, in terms of: once we interpret it this way, are we going to end up with voluntaiy euthanasia as a law? That is not Mrs Hannan: We did ask him when he was here! what I intend, but everything is open to interpretation, it would appear. (Laughter)
The Chairman: I appreciate your opening comments Mr Rimington: Yes, we should... where you described your change of attitude from when you had done your PhD thesis to your current position, Dr Huxtable: Well, I will ask him when next I see and notwithstanding that, in your opinion, is there any him! opportunity to have almost a parallel system that might accommodate some person wanting to make a choice, and Mrs Hannan: Right. There was something else I was having medical professional support to support them in that, going to ask. No, it has gone. and people on the other side of the coin, who do not want to make that choice, do not feel it is appropriate and doctors Mr Rimington: Can I just go off onto a bit of a tangent? or medical professionals who do not want to engage in that? It is not an issue we have discussed - the Committee, or in Could the two actually run in parallel, or are they so contrary, evidence - but people, anecdotally, say, ‘You would not in your view, that that would not be feasible? treat my dog like that. If my dog was in pain or whatever, it would be put down’, and that is what we would do with Dr Huxtable: I feel, in theory, that they could run in animals, generally speaking and given - okay, there is one parallel. I would not be entirely comfortable with that, hurdle that we have to acknowledge that the animal cannot although, as I have mentioned a couple of times, I am aware voice its feelings, like ‘Please, put me down!’, whether it has of those hard cases, so I am concerned by the plight of some those feelings or not, it certainly cannot voice them that we patients. So, I would concede that, in theory, yes, you could can hear. How do you draw that distinction between animals have a twin-track system. and man, and where in the spectrum does one come down One more pragmatic concern there, that I have seen crop and say, ‘This is intelligent life and should be treated in one up occasionally in the literature, is the concern that once we way, and this is not intelligent life and should be treated in have a system of voluntary euthanasia, then the palliative another way1, when there are other mammals with, obviously, medicine might well suffer. high degrees of intelligence.
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Dr R Huxtable 110 KCE SELECT COMMITTEE, WEDNESDAY, 23rd JUNE 2004 Oral Evidence
Dr Huxtable: Yes, certainly. 1 think a number of she was living in an annexe of their house. She expressed responses spring to mind. again - after having much psychiatric treatment and the like, One would perhaps be to again draw on this notion so the doctors had attempted to deal with any underlying of hard cases making bad law. I would suggest, but I am depression - her intention to attempt suicide. They did reliant here on evidence from those working particularly nothing actively to assist her when, one night, they returned in palliative medicine, in hospice care, that with regards home and they found that she had, actually, taken an to human suffering, we can actually do a lot to respond to overdose, but she had left them a note saying, ‘Do not call such suffering, and requests for euthanasia would appear the doctors, do not do anything to revive me. You know this to be requests to deal with undealt with symptoms, rather is my wish: leave me, go.’ than a request to die as such, because if the symptoms are They sat with her. That is all they did: they sat with her, dealt with, the request or the wish goes away. That is again, while she was dying, and when they were sure that she had perhaps, anecdotal evidence, but that seems to be the message died, they then called the ambulance and called the police, I get, quite loud and clear, from my colleagues in palliative so that they did actually bring in the authorities. They said medicine. 'We did not do this, but this is what has happened to our With regard to whether we are being consistent in drawing daughter’, and they were actually convicted of aiding, a distinction between humans and animals, maybe we could abetting, counselling or procuring a suicide. work it back the other way, and say: there are things that we I think that is an incredibly difficult case, both in terms of do to attempt to deal with human suffering that perhaps, if autonomy and in terms of when we are to honour advanced we have got a pesky cat urinating everywhere, our response directives or living wills. There is still a big debate going on is euthanasia in the end. So, maybe we should do more to as to whether a suicide note might amount to an advanced respond to the animal suffering. I do not know, quite, what directive or living will. My personal reaction would be, of the most consistent response would be, and I know that, course, if it is an emergency case, and the person is brought interestingly, one of those very much in favour of human in, and the paramedics have found the note, then your instinct voluntary euthanasia, Peter Singer, actually thinks that we are probably ought to be, unless it is a comprehensive advanced radically inconsistent in our treatment of animals as opposed directive, to resuscitate or revive, and then determine, and to humans, and he would argue in a number of his books that if it truly is their express wishes, then they can leave an we should not be so ‘speciesistic’ is the term that he uses, appropriate note, next time. and that we should adopt a consistent quality of life ethic and So, life first, but then autonomy second, so people ought also an ethic premised on choice and autonomy. to have that right to decide for themselves ultimately. So, where the animal is a lower order animal they cannot Does that help? As I say, my problem is: we have this exercise choice, but they can suffer, so we can respond to inconsistent position with regard to this one ‘successful’ their suffering. Where it is a higher order animal, such as conviction - ‘successful* very much in inverted commas a human, you listen to what they want, but also respond to there - of two parents for sitting with their daughter, whereas their suffering. if a health professional acts on and honours an advanced directive, that is not criminal. M r Rimington: A big subject! Mr Downie: In my view, that goes back to the question Dr Huxtable: Yes, it is. I asked you about the common law and 'whose life is it anyway?’ (Dr Huxtable: Yes.) Under law, you have not got Mrs Hannan: It is, isn’t it! Yes, what about all those a life; the Crown owns you (Dr Huxtable: Yes.) - simple animals gone to the meat plant? (Laughter) as that.
The Chairman: Mr Rimington is our Agriculture Dr Huxtable: Yes, I think that is the right opinion and, Minister! again, there is a big debate as to whether the Suicide Act, which decriminalised suicide, actually granted a right to Mrs Hannan: Quin tin, could I just ask - ? commit suicide, and the big suggestion is that is did not
Mr Rimington: And the wildlife! (Laughter) The Chairman: Okay, I learned a lesson a long time ago: never let a chance to ask for something go by. You Mrs Hannan: Could I just go back to the suicide: if a mentioned your dissertation a few times: I am not sure we person thinking of suicide briefed their family in regard to have a copy of that but if we do not, could that be possible that suicide, could that family be accused of assisting that for you to furnish us with one? suicide? Dr Huxtable: Certainly, yes. Dr Huxtable: This is one area of the law I very much disagree with. They can, in theory. It is one that has, again, The Chairman: Lovely, thank you. scarcely been written on. I recently wrote on it for the British Medical Journal, where there was a very distressingly Mr Rimington: It is not too weighty, I hope? inconsistent, apart from anything else - a distressing case (Laughter) in itself, in 1989, involving a Mr and Mrs Johnson, whose daughter had written a suicide note... Dr Huxtable: Eighty thousand words. Well, actually I will take you back a bit further she had attempted suicide a couple of times before. I think she had Mr Anderson: Well, the Chairman will deal with it. multiple sclerosis that was progressing quite seriously, and (Laughter and interjections)
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Dr R Huxtable Oral Evidence SELECT COMMITTEE, WEDNESDAY, 23rd JUNE 2004 111 KCE
Mr Rimington: We will give it to the Chairman to do a Committee members: Thank you very much, a synopsis! (Laughter) pleasure.
The Chairman: Yes, if you would like to add in a The Chairman: Right, that is the conclusion of the synopsis as well! (Laughter) It is very kind of you, thank public evidence. We will just resume for some administrative you. matters, but, otherwise, thank you all, ladies and gentlemen, Just to turn to you, Dr Huxtable, if there are any very much for your attendance; and Dr Huxtable, thank you concluding comments you want to make? again.
Dr Huxtable: I think everything I intended to cover has actually come up. I just reiterate my thanks for inviting me. Thank you very much. The Committee sat in private at Ì.Ì7 p.m.
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Dr R Huxtable
KCE, No. 4 2004
j c i w f
HOUSE OF KEYS OFFICIAL REPORT
RECORTYS OIKOIL Y CHIARE AS FEED PROCEEDINGS DAALTYN (HANSARD)
SELECT COMMITTEE ON VOLUNTARY EUTHANASIA
BING ER-LHEH MYCHIONE COYRT-GY-BAASE MYGHINAGH LESH COARDAILYS
Douglas, Friday, 17th September 2004
Published by the Office of the Clerk of Tynwald, Legislative Buildings, Bucks Road, Douglas, Isle of Man. © Court of Tynwald, 2004 Printed by The Copy Shop Limited. 48 Bucks Road, Douglas, Isle of Man Price Band B 114 KCE SELECT COMMITTEE, FRIDAY, 17th FEBRUARY 2004
Members Present:
Mr Q B Gill MHK (Chairman) Hon. D Anderson MHK Hon. A F Downie MHK Mrs H Hannan MHK Hon. J Rimington MHK
Clerk: Mr M Comwell-Kelly, Clerk of Tynwald
Business transacted
Page Procedural...... 115
Evidence of Prof. A Johnson...... 115
The Committee adjourned at 12.05 p.m. until 12.10 p.m.
Procedural...... 128
Evidence of H M Attorney General...... 128
The Committee sat in private at 12.55 p.m. Oral Evidence SELECT COMMITTEE, FRIDAY, 17th SEPTEMBER 2004 115 KCE
as a general surgeon particularly, in the gastrointestinal (GI) House of Keys Select Committee tract. I and a colleague were the first people to teach medical on Voluntary Euthanasia ethics to medical students about 30 years ago, in the context of clinical teaching, and we set up seminars with the students and discussed actual patients on the wards that we The Committee sat in public at 10.38 a.m. were looking after. It is very easy for professors of ethics in the Legislative Council Chambers, in ivory towers to pontificate on ethical principles; it is a St George’s Court, Douglas very different matter applying these at the bedside to real patients, and as a result of that 1 have written two books on medical ethics for medical students, looking at the practical, [MR GILL in the Chair] issues involved. I was also Chairman of the Royal College of Surgeons of England working party that was looking at the surgeon’s duty of care, and we published guidelines for surgeons as Procedural a result of that. I would just like to say it is fascinating to see how The Chairman (Mr Gill): Ladies and gentlemen, attitudes have changed over the last 40 years, because as I moghrey mie, good morning, and Prof. Johnson in particular. was starting in practice, the palliati ve care hospice movement I am sorry we are starting just a few minutes adrift of the was just beginning, and I never believed that I would end time we had hoped to start, but, obviously, we have had to up having a professor of palliative care in my Department relocate here to St George’s Court because we did not want of Surgery at the University of Sheffield, to work closely to disrupt the building work which is going on across the with him, and he was appointed about eight years ago. road at the Central Government Offices. So, thank you all But I think it is important to stress that this palliative care very much for attending. hospice movement has had a huge effect on general care It may be that because we have relocated, other members and not just on hospice care. We think of it being something of the public will be arriving late, so, Prof. Johnson, I extra, and I was very glad when the dean asked me to have apologise in advance if that is the case, and hopefully that the Palliative Care Department with me, because it has had will not disrupt your facility to give evidence. also a tremendous influence over the way we care for dying If I briefly explain for the record that we are a Select patients in ordinary wards and in ordinary practice. It has Committee of the House of Keys looking into issues around produced a whole new attitude of honesty about disease and voluntary euthanasia following the introduction of a Private I think it has influenced, tremendously, pain relief throughout Member’s Bill by my colleague John Rimington, who is to the patient’s care, not only in terminal but throughout the my right, and we are tasked with collating evidence and patient’s illness, reporting back to the House, and then matters will progress I would like also to say that I have a lot of sympathy with accordingly. So, that is our role today and hereafter. people who have had distressing experiences. We as doctors Prof. Johnson, if I could welcome you to the Island and have not always got it right, and I think we have got to to our Committee and thank you for making the effort to acknowledge that. There have been some very distressing and come and speak with us. It is appreciated. unfortunate experiences, and I, too, have had close relatives If 1 briefly do the introductions, if I may. To my left I dying in distressing circumstances, both of acute disease and have Mr David Anderson MHK, Mrs Hazel Hannan MHK. I long-standing chronic disease, so I am not detached from the am Quintin Gill; I am the Chairman. I am also a Member of issue which we are going to discuss. the House of Keys. Alex Downie MHK and John Rimington Euthanasia was being discussed by us 40 years ago and, MHK and we have two Clerks. One with us today is Mr as you may know, the first introduction to the UK Parliament Cornwell-Kelly who is the Clerk of Tynwald and also his was by Lord Raglan. He, after it was not approved, said deputy, Mrs Cullen, who will be co-writing the Report for that he could not see any way that legal safeguards could us. So, that is who we are. be provided and, at the time, the BMA Ethics Committee said exactly the same thing. 1 do not know whether lawyers have become more clever in the last 40 years. No doubt that is a question you are going to ask the Attorney General EVIDENCE OF PROF. A JOHNSON when he comes. I have only been asked for direct euthanasia, I think, The Chairman: So, if we could turn to yourself, Prof. in my 40-year practice, on two or three occasions - a lot Johnson, perhaps if you could give us a brief introduction to of people have said ‘I wish I could die’, or ‘I wish I was yourself and your professional background and what brings dead’, but not direct persistent asking - and 1 would just, you here and then if you want to do an introduction. Then, perhaps, mention one of these because it is very strong in perhaps, we will turn to a question-and-answer session, if my memory. that would be an acceptable format for you. Thank you. It was a man with a painful but benign condition, not a malignancy, who repeatedly asked me and my colleagues to Prof. Johnson: I retired last year as Professor of Surgery kill him. He asked for us to do an operation and then not tie in Sheffield. I had been in practice in the health service in the blood vessels, so he would die under the anaesthetic. We the UK for exactly 40 years when I retired, and, of course, got to know him better in the ward and, eventually, he broke have seen a lot of changes over that time. My practice was to down and said, ‘You can see I’m so lonely’. Then we realised treat a large variety of both benign and malignant conditions, that he was appealing because he was so lonely. His wife had
Procedural House of Keys Select Committee on Voluntary Euthanasia - Evidence of Prof. A Johnson 116 KCE SELECT COMMITTEE, FRIDAY, 17th FEBRUARY 2004 Oral Evidence died and he was appealing for help in this way. But that was are asking for, and I think we have got to be very careful persistent asking, and not just to me but to colleagues. not to just take the superficial appearance, such as pain or One thing I would just like to mention at this introduction something like that. The pain may be mental, spiritual, not is use of the word ‘incurable’. It is a very difficult word to just physical. define. I have only cured one disease, I think, in the whole of my practice and that is appendicitis, because you have only The Chairman: Thank you for your definition of got one appendix and when you have taken it out you cannot ‘incurable’, or your explanation of that. By the same token, get it again. But nearly all other diseases I have treated can it would be fair, then, to say that all of us in this room are come back. Vascular disease, cardiovascular disease: you suffering from sexually-transmitted terminal conditions. treat one bit of it in a leg or in a heart, but the disease process is still there. I suppose the commonest painful, incurable Prof. Johnson: Yes. disease is arthritis, from which millions of people suffer to some degree or other, so I think we have got to be very The Chairman: We are all going to die. So, incurable in careful when we use words such as ‘incurable’ because it that context is... I am not trying to be flippant in saying that can be very misunderstood. but there is a definition and an understanding, isn’t there, of So, that is really my experience, and I have done a lot of terms? Is there a legal definition of ‘incurable’ that you are thinking about the effects that any legislation would have on aware of, that you could point us towards? doctors as a profession. That is one of the areas I have been wrestling with, how it would affect us as practising doctors. Prof. Johnson: Well, what most people think is that it I could talk more about that if you wish later. is progressive. They think of it as incurable, and I think you have got to use certain words like that, but, of course, most The Chairman: Thank you very much. diseases are progressive, as you rightly say, as they become Could I begin by picking up on a few issues that you worse with age. I think, again, the lawyers have got to look at raise there, Professor. Certainly, I would welcome the chance this, if you are going to consider legislation. It is very difficult to come back to the impact on the profession, not only to define these in a way that is legally watertight. Of course, doctors but nurses, medics, the whole healthcare profession, pain is not an objective thing we can measure. We have not subsequently. You told us the incident of one of your patients, got a painometer, and severe pain to somebody may not be who, on further examination of his circumstances, said that severe pain to somebody else and, as we all know, mental he was lonely. Do you want to just tell us a little bit about and other social conditions affect one’s sensation of pain. how that situation bedded out? The Chairman: Just two more points perhaps, if I may, Prof. Johnson: Yes. I think we talked to him, we got to before I turn to my colleagues, Professor. know him, we helped him in various ways and this was very I think I wrote down you used a phrase that doctors much an appeal for help. I am interested that if you look at have not always got it right. We have had representation the indications for euthanasia in Holland and in Oregon in from a doctor on the Island representing his colleagues in a the United States, over the time, certainly in Oregon, there professional capacity in which the point was put to him: ‘Do was an increasing number of people who put hopelessness, people die in distress and pain?’ and could I put the same loneliness and not feeling wanted as their criteria. I think the question to you? Despite advance in palliative care, despite figures in Oregon for the first three years were 12 per cent, all the technical advances, is that still the case, that in your 20 per cent and 60 per cent. In Holland, pain as a reason experience people die in pain and distress? has been going down and feeling hopeless... and this is one of the things I think that we increasingly see with elderly Prof. Johnson: Less and less. We have this great patients. It is actually a social, mental issue that is at stake, advantage of having a palliative care department and not primarily a physical issue. I suppose we are especially privileged, and we have anaesthetists who are expert in pain relief, as well, and I think The Chairman: So, in that instance that you cited, was what is encouraging... I think a few may still do so, but I the gentleman counselled out of his - ? think I can say, if we really had the facilities and the skills, it should be extremely rare. All our students now go through Prof. Johnson: Yes, fortunately we have a lot o f. .. As a palliative care module as part of their undergraduate you say, it is not just the doctor. You have got a lot of other training. That was not happening when I was a student. It support staff and social workers and people like that. was very much haphazardly taught and not really taught at all. So, I think a new generation of doctors coming through The Chairman: So, that would suggest that any process will have much better training in this sort of aspect, and it that afforded people the right to choose to make persistent is not just giving drugs for pain; it is the whole patient that requests for euthanasia would clearly need to have a robust we are looking at. counselling process as part of that. The Chairman: And that doctor-patient relationship, Prof. Johnson: Yes, it is identifying the real cause that will follow from that awareness and appreciation and behind this, and it is, of course, an increasing problem, practice that you have just touched on; there is an argument loneliness in old age, as more and more people are living that that relationship would be soured or flawed by the alone, certainly in the UK, and Social Services are, of course, fact that people would have less trust in a doctor, if that helping tremendously with this. I think it is very difficult to person acceded to their persistent and informed request for make this distinction and it is very difficult without going euthanasia. Do you have an observation on that? in great depth with people, to understand really what they Prof. Johnson: Yes, I think it would have long-reaching
House of Keys Select Committee on Voluntary Euthanasia — Evidence of Prof. A Johnson Oral Evidence SELECT COMMITTEE, FRIDAY, 17th SEPTEMBER 2004 117 KCE but often subtle effects on this relationship. You will not not patient-focused. get attitudes changing suddenly, but gradually it would change. Prof. Johnson: You asked me as a doctor. As far as Let me just give you the scenario. I have been looking patients are concerned, as I have said, there will be a mistrust after a patient and giving her pain relief, managing her developing, particularly under the elderly, unsure patients, symptoms, 1 have been worrying about her at night. I have who are very nervous when they come into hospital and been getting up at night to see her sometimes, perhaps been come under care and they would just hear rumours. ‘Oh, called in, and then she turns round and says, ‘Well, thank well they put you down if it gets too difficult,’ will be the you very much for your care, Doctor, would you now kill sort of rumour that is going around. I know that is not what me.’ I would find that a very difficult relationship. I would is intended, but that will be the side effect. say, ‘Well, why have 1 bothered to look after her all this time?’ ‘Why didn’t she say it earlier?’ would be one of my The Chairman: Yes, and you used the tabloid basis of reactions. Dr Death. Surely doctors are not overly concerned whether Then there would be the effect on other patients, not the they are being given an unfair title, or you would not angle ones concerned, as the news got round, and in our hospital we to be Professor Compassion or Dr Caring. That is just a have got four-bedded bays. Most of our patients are in four- tabloid title that really is a by-product of the whole process, bedded bays - not big old-fashioned wards - and one or two surely. I just wanted to explore a little more why you felt it single rooms. They talk and they gossip about things, as you was appropriate to raise that issue. well know, and I think they will start saying, ‘Oh, he’s done two. The Professor’s done three. ’ Will you move people out Prof. Johnson: Because a hospital setting is a very to a special death row, if you like, beforehand? How would tight community and a large number of doctors will not get you actually handle this at the bedside? As I say, it is very involved in this, judging by the surveys, if it was legalised. easy to talk about these things like autonomy in the abstract, So, some would and I think what you would find is one or two but we have actually got to get involved with this. would be the major people to get involved in that. So, I think So, 1 think the relationship between the doctors would they would tend to get a label. How would you actually deal with the patient in the ward? Will you move them? Will you alter very markedly, slowly and subtly, and as you know, do it in that ward with the other four people around? These the doctor in Australia was nicknamed Dr Death, wasn’t are the logistics and patients are saying, ‘No’. If you say, he, the one in the Northern Territories? I would not like to ‘Oh, they are being moved to that single bed. Right, I know get that label for myself and I do not think any doctor that I why they are being moved to that single room.’ Patients do have ever worked with would like that label, but that would talk about their doctors a lot, certainly in a hospital setting, be the sort of thing that I think would happen if a person and I think they do get nicknames and labels, yes. was involved. So, yes, it would lose the confidence of the elderly The Chairman: The evidence you have given, so far: patients particularly, who are not very sure, they are not is this all on your professional experience and professional very certain. They would start doubting, I think, the doctors’ basis? For clarity, could 1 ask, do you have any faith that is caring and the relationship with particular patients. And the also influencing and guiding you? other effect, I think, is - if I may just go on from that - a quite interesting one. It might also have the other effect, Prof. Johnson: I think that the Hippocratic and then that doctors would say, ‘Look, why should I try hard? Why the Judeo-Christian ethic which has guided us for the last should I really try and help save this patient? We've always 2,000 or 3,000 years has been a tremendous instrument in got this as an outlet.’ the compassionate care that we have developed. Everybody This was brought home to me by a colleague of mine thinks that the Hippocratic Oath was the norm in Greek times. who trained as a vet before he trained as a doctor, and he Of course, it was not at all. It was the exception and it was was telling me that he had to, all the way, check himself, a few who said, ‘We are not going to practise what the rest because in veterinary medicine you always had this feeling of you are practising’ - and that was leaving girl babies on that if you did not win you could always put the animal down. the hillside to die - ‘We are going to have a much higher I could see people saying, ‘We’re not going to try too hard standard,’ and that is why the Hippocratic Oath came in, from here because there is always this euthanasia option,’ and a small group of Pythagoreans in Greece and then, because although you say the patient has complete autonomy, they it fitted with the Judeo-Christian ethic about the value of do not. There could be persuasion. life, it has come right the way through. Our medical school Doctors have quite a lot of influence over the way is one of the veiy few where they still remind the students people think and, in discussion, you can point people in of the Hippocratic Oath when they qualify, when they get that direction and people will say, ‘Why do we bother to the diploma. Most people have dropped this. do research on some of these very difficult diseases? Why should we do more work on good pain relief?’ if this option The Chairman: And for you personally, Professor, do comes in. So that will, I think, be a subtle change in people’s you bring any faith to your practice? attitude to disease and its management. Prof. Johnson: I do, Christian faith, yes. The Chairman: That sounds a very doctor-focused - The Chairman: Mr Anderson? Prof. Johnson: It is. I am seeing it from a doctor’s point of view. Mr Anderson: Can 1 first of all thank you for helping The Chairman: - basis that you have given that and to give us a balance. We have had ethics before, but it is
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Prof. A Johnson 118 KCE SELECT COMMITTEE, FRIDAY, 17th FEBRUARY 2004 Oral Evidence
good to have somebody who is actually very practical and Just moving on, you touched on the effects of legislation has obviously had a very deep and working practical life coming in on doctors. If, for example, the Isle of Man was in health. to progress down the legalisation route, what implications You touched on palliative care. We in the Island have a do you think that would have on the Isle of Man’s ability to very good Hospice and, obviously, the UK has a network recruit to our National Health Service, when we are the only of hospices now. What you are saying to us is that the level jurisdiction that legalises this in Great Britain? of palliative care within the normal hospital settings is now increasing to such a degree that the pain that people go Prof. Johnson: I think this would producc problems. We through at the end of their life is greatly reduced, and maybe are short of doctors in the UK, particularly in the area of care you could give us an overview of how that has changed, of the elderly and areas which are seen as not so dramatic as even in the last few years, compared with maybe 20 or 30 acute services. We have great difficulty in recruiting people years ago? to that, and I think you would have a lot of people that would not want to come. You might recruit the wrong sort of person. Prof. Johnson: Yes, I think, in drug terms, the use of You might recruit the person who is perhaps a little bit too different types of drugs, not just increasing doses of one cavalier in this area. particular drug like morphine, which we always think about The other thing to look at is the ethnic minority groups. in pain relief, but the use of other types of drugs. But I I do not know whether this is an issue in the Isle of Man, think the thing that really has come is looking at the whole bu,t in the UK, about 20 per cent of our doctors come from patient. It is not just giving a drug for pain relief and that ethnic minority groups, and that is a very important issue. is the message that has come through: the patient’s social, They also are particularly in the care of the elderly side of the spiritual and mental understanding. things and, of course, it is an absolute anathema to a Muslim 1 do not know whether you know, but, in the UK, they to consider euthanasia. So, I think you would be blocking a are appointing directors of spiritual care in all palliative whole ethnic minority group from coming and that might be care centres. They are beginning to do this. The first one construed, in a sense, as prejudice against them. was appointed in Scotland last year, recognising that it is the whole patient we are caring for. So 1 think that is the big M r Anderson: Thank you. emphasis. Whereas we were quite good, I suppose, some Just moving on, if I might, Mr Chairman. Obviously, that would impact as well on the nursing profession and, realising years ago at giving increasing, titrating doses of drugs, that we follow national standards, do you see a concern we are now realising that there are a lot of other drugs and there, as well, in that the standards that medics and nurses anxiolitics as well as drugs. Sorry, anxiolitics are drugs to are trained to, if they are any different in our jurisdiction, stop anxiety. Often you do not need nearly as much of the for example, would that create a tension or would we have painkiller if you give a drug that helps with the anxiety as to create our own standards for people as guidelines? well. And so there is a tremendous skill. Cicely Saunders, as you know, who started off the hospice Prof. Johnson: Well, I think if you go by the Diane movement, trained as a doctor and nurse, a pharmacist and Pretty legislation on Human Rights in Europe, are you asking a social worker before she set it up and that, I think, is a doctors to go against that, which is a very serious thing to message to the whole community that you need all these do? So, you would actually create two types of doctors and skills. nurses: those who do go along and those who do not. I was talking to a Canadian just last week, a Canadian Mr Anderson: It must be very difficult for you to pluck doctor, and he could foresee, in the next, perhaps, 20 years, a figure out of the air, but of people going through the dying the medical profession in Canada splitting into two halves, process, how many people would not be able to be helped, actually splitting into what they call the Hippocratic group as a percentage, do you think, nowadays, with these modem and the non-Hippocratic group, but it would not happen drugs? suddenly, as I have said. A lot of these things are subtle and they grow steadily, but you gradually drift apart, the two Prof- Johnson: I would say it is less than 1 per cent, attitudes, and you would end up with a different sort. I am I think, who are in real distressing... as I say, we cannot very concerned, with nurses in particular, that we do not put measure pain but they do, in my experience - and 1 am on to them something that doctors will say, ‘This is what dealing with cancer patients, general surgical patients - even you have got to go along with,’ In our hospital, of course, in the main ward of a general hospital, the great majority, 90 any issues or decisions about patients are discussed with the per cent? It is a figure out of the air, but I can only think of nurses as well. It is very easy for a doctor to override the one or two examples where I feel we could not relieve this nurses’ opinion and make them feel that they do what we tell in the last 10 years. I can think of quite a lot of examples them and that is, of course, quite different now from how it looking back to my early practice, where one or two stick used to be. They are equal partners in care and they, I think, in the mind where we just did not relieve very severe pain would be extremely concerned. I do not know whether you because we did not understand it and what was causing it. have taken evidence from nurses or not at this Committee. The other thing is things like nerve blocks and these sorts of things. Local-anaesthetic relief of pain has come in and Mr Anderson: Just moving on on that one, then, uses of very skilled things like epidural blocks and things the legislation at present actually protects doctors with like that and this keeps the person fully conscious and not medication they give that pfossibly has a double effect. Can damping their activity as well. You are just relieving the you see a problem then in legislation terms if, for example, pain. we change that? The Isle of Man legislation is different and Mr Anderson: Thank you. we have this double effect at the moment. If we change that
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Prof. A Johnson Oral Evidence SELECT COMMITTEE, FRIDAY, 17th SEPTEMBER 2004 119 KCE legislation, do you think that would cause a tension with owned it and they could do what they liked with a child. The the new law? genius of the Christian and Jewish ethic is that children have been valued, and here we have got people saying that young Prof. Johnson: You mean allowing...? children do not matter, they can be put down, and we have got people introducing euthanasia for children in Belgium. Mr Anderson: Allowing them to go further than that double effect? The Chairman: Could I interject, Professor, to make it clear that our remit is to discuss competent adults, but I Prof. Johnson: Yes, I think it would. The double effect, take your point. of course, is commonly quoted. As you well know, it is things like doses of drags. The dose you would give to a terminal Prof. Johnson: That is true, but all I was saying is the patient is often very high, but they become tolerant to that effect on society was what I was asked about, and I think over the last three or four weeks. If you gave that dose to that would be one of the effects on society if, two years somebody who had not had any, it would be a lethal dose. So, afterwards, you are talking about children and that influential you have got to take it into context, and it is interesting that philosophers are saying that young children can be killed by the titration between pain and breathing is often actually quite their parents with no worry for society - that is what he is balanced, that the pain from the breathing also goes along saying, and he is teaching medical students. with the effect on the pain. So, the double effect is there. I do not consciously, I think, say ‘Right, I am being protected Mrs Hannan: Could I ask you, you talked about patients from the double effect as 1 give this treatment,1 but it would in hospitals in four-bedded wards and people being moved, alter the intention, that is the point. It is a different intention. but patients do die in hospital, don't they, and patients do That is the legal distinction,.as 1 understand it. know that, when someone near to them has died?
Mr Anderson: And finally for me, Mr Chairman, at Prof, Johnson: Yes, they do. the moment, what do you think bringing in legislation in a jurisdiction like ourselves would have on society? Mrs Hannan: And they also know when patients are being moved to a hospice, so this is happening all around Prof. Johnson: Again, 1 think the attitude would slowly us all the time. So yes, it would be distressing if someone change. The attitude to suicide would change. I think in the next bed to you died, especially someone you were gradually people would say, ‘Well, if a person wants to talking to a few minutes before. commit suicide, let’s let them,’ because, after all, if you can But in the other area, you were talking about doctors legally do it... Can I just take an illustration? Nowadays, actually taking part in euthanasia and the doctor in Australia if you find a man standing on a bridge saying he is going being called Dr Death. That does not happen in hospices, to jump off because he wants to kill himself, we send a does it? Why does it not happen in hospices, that doctors policeman up there, risking the policeman’s life to try and get labelled as Dr Death? coax this person down because we want to save his life. If euthanasia became a sort of standard treatment, we might Prof. Johnson: Because they care for the patient. They say, ‘Okay, we’ll let him jump,’ or you might even say, are not coming up as an actual event. We are talking about ‘Let’s give him a little bit of a push and help him to jump, an event here where you come up to a patient, you mix up if he really wants to commit suicide.’ That is actually the things in a syringe. The actual giving of this you have got society equivalent. to think about. Somebody gave a nice quotation to me the other day and 1 think it is that ‘the respect for human life is part of the glue Mrs Hannan: Why do doctors have to do that? that binds society together’ and once you gradually lose that you are going to lose the respect for life in other areas. Prof. Johnson: Why doctors have to do that is a very I was horrified: I was in Europe last week and Belgium,.. good question, but that is what is being proposed, I think, It was a Belgian newspaper. They introduced euthanasia, that doctors should be the people who... the caring doctor I think it was about two years ago. Two of their MPs are is the person who should actually do it. now trying to introduce euthanasia for infants and children, euthanasia for infants also. Everybody else does not like the M rs Hannan: What we are looking at is medically- words ‘slippery slope’, but if that is not a slippery slope, I assisted dying but - do not know what is, and when you have got philosophers and teachers of medical ethics like Peter Singer, who teaches Prof. Johnson: Well, it says medically-assisted dying, medical ethics to medical students, saying that for parents to doesn’t it? kill their children has no worry for society - that is what he actually says, because he thinks that human beings are just Mrs Hannan: Yes, that is what it says. That is what animals - you can see what can happen if you start going the title of the legislation is, medically-assisted dying, but down this direction where children have no particular value. what I am saying is: you are saying about the doctor-patient ‘Alright, let’s get rid of them.’ relationship and the doctor looking after a patient one That did happen, as I have said, back in Greek times. The minute and then killing them the next minute. This seems Jews were the only ancient race who respected children, and to be what you are saying. It would not necessarily be like the penalty for killing children in Jewish law was the same that, surely. Patients do die. You have had patients that die as for killing the king. Other ancient races did not value in your care. children at all: to the Romans a child was just a chattel, they Prof. Johnson: Indeed, all the time, yes, but I am not
House of Keys Select Committee on Voluntary Euthanasia — Evidence of Prof. A Johnson 120 KCE SELECT COMMITTEE, FRIDAY, 17th FEBRUARY 2004 Oral Evidence coming up to them with a mixed-up syringe to a fully see this being relevant to those sorts of people, although competent mentally-alert patient and saying, ‘Right, now that is what is said, I think, in some of the details. If they we’re going to put this into you,’ and the people next door are well cared for, peaceful, at that stage, I do not think this know we are caring for patients and trying to relieve them, would be a very common request at all and if you are only give them a good death. That is quite a different matter from changing the life — what is being proposed. But you are quite right, I think that if you did introduce Mrs Hannan: If their pain is getting greater and they legislation, I think doctors should have nothing to do with it are not able to cope with their pain, even through all the at all. I think the caring doctor’s only responsibility should drugs, which you have said yourself does not necessarily be to give the facts to his patient and then you could arrange always work. for technicians to be trained to do this, out of the caring context, and then in the same way as a patient might say, ‘I Prof. Johnson: But it nearly always does. I think in that don’t want anything to do with you now, I’m going to go situation you would just continue to do that. I cannot see the off to a faith healer or a quack person to have my treatment,’ point of introducing a whole lot of legislation for three or and then they would do it and people could train to do it. I four days. That is what you are saying, a huge complicated... must not suggest that this Committee should be the first to Altering perhaps the whole attitude of professions for the train, but ordinary people, people who are not doctors, could sake of a few days in a person’s life who is being cared for train to give this. in the ward carefully, or in a hospice. This will presumably But I think you have got to realise it is not a nice be requested in hospices, as well, where they are working thing. The experiences in Holland are that it can be quite very hard to relieve symptoms. So, I think if you are talking unpleasant. People can vomit, they can come awake, alert about the last few days of life, you continue what you are again in between. People, think of it as a very sort of nice, doing well, which is giving them gentle and hopefully pain- tidy, simplified thing that a doctor can go and do without any free care. sort of emotional involvement and I think that is not so and 1 think that you have got to think very carefully about how Mrs Hannan; In your area, do people who are terminally you would actually do this. But I think there is a difference ill commit suicide, in your knowledge? between a patient dying, who I have been caring for and the other patients on the ward have seen me coming, helping Prof. Johnson: No, I think that 1 have got no experience them and me coming up with a specially prepared syringe of anybody committing suicide. I was talking to a person and drip and the patient saying, ‘Now, this is it,’ and people who ran a big hospice - 10,000 patients a year - and he said hearing that. That is a different thing all together in the care that two had committed suicide out of all the patients he had of a patient. had in there over... I am sorry, 1,000 a year, so it is 10,000 over 10 years. Two have committed suicide. Mrs Hannan: Isn’t that because the patient has requested I have had no patients, but I am glad you mention that it? because when I was a student, one of the reasons for not telling a patient the diagnosis - and we were told not to tell Prof. Johnson: Yes, because of the circumstances in them, or even tell them a lie, about their diagnosis, as students which it is done and they know people have come along and 40 years ago - was that the person had once had somebody signed forms with them. They have seen the lawyer, whoever commit suicide when they had been told the diagnosis and it is, coming to check their- so he said, ‘I will never tell anybody again that they have got cancer.’ That is what the hospice movement has changed and Mrs Hannan: Where is the autonomy of the patient in the more open we are with people, the more we explain things this then? The patient has asked. You talked about one case and the more we support them as we explain their illness to where the patient requested on a number of occasions and them, the less and less this becomes an issue. then you found out the reason why, but if we are talking I think suicide is very rare. Those were the figures: about a person who is extremely ill and terminal - not 10,000, 1,000 a year for 10 years, it had two suicides from incurable, terminal - that is going to die in the next week people. or very seriously terminally ill. They are going to be given painkillers anyway, and they are going to be given the drugs M rs Hannan: Thank you. that you have spoken about and it could be that they would die earlier, because they have been given these drugs, than M r Downie: Yes, Professor, there are a couple of areas I they would otherwise. People know about that in hospitals, want to question you on. First of all, I would like to ask you the patients next door. if you have had experience during your career of dealing with a patient who has perhaps made a living will or expressed Prof. Johnson: What is the point of, if a person is going a wish to opt out of certain types of treatment, and how do to die in the next few days, going through all this legal you deal with that, knowing perhaps that you could be of process of having a special way of killing them? I cannot some assistance? see how you have helped anybody then, it is a non-sequitur. If you - Prof. Johnson: Living wills in the UK have not really been very prominent. There have been a lot of studies of M rs Hannan: They have made the decision that - living wills in other countries. The great difficulty is to define the exact circumstances in which that living will Prof. Johnson: But surely they should be making that will act. 1 have known doctors who have said, ‘I don’t want decision, in a sense, much earlier in the process. I cannot to be resuscitated if I come in with certain conditions,’ for
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Prof. A Johnson Oral Evidence SELECT COMMITTEE, FRIDAY, 17th SEPTEMBER 2004 121 KCE
example. something like that, they would be asked at the interview, When you say, ‘Look, what do you actually mean? Do ‘Do you go along with the euthanasia legislation or do you you mean you don’t want to have your heart treated when want to opt out?’ and they say, ‘No, I want to opt out,’ and you have a heart attack?’ they will not get appointed. This has happened, of course, ‘Oh no, I didn’t mean that. I mean 1 don't want to be to a large degree in the abortion law in the UK. If a person resuscitated.’ does not want to get involved, they are just not appointed ‘Well, in what circumstances don’t you want to be?’ to the job, so they are not in the situation where they have 1 have had only one or two where there has been... I to not do it at the time. So, I think you would have to make cannot think of anybody, where there has been a legal, living some arrangements other than just in the ordinary National will that we have had in the notes or in the patient’s papers. Health Service care. So the difficulty is defining the circumstances ahead of time, 20 years ahead. Mr Downic: Thank you. The other interesting experience of living wills which A theoretic question really, but have you ever felt during has come out of some of the European countries is that your time, your career as a consultant surgeon, that if it would the more experience that patient has had in hospitals with be possible to end a person’s life by assisting in some way, illness between the time they made the will and the time they the pain and suffering was so great that you would perhaps actually get to a serious event, the less they want to have be tempted? what they put in their living will. You would think it would be the other way round, wouldn’t you? You would think the Prof. Johnson: No, I truly have not in that situation. I more experience they had, the more they would want it, but think you have got to realise doctors are human and I have it works the other way, and a living will they make when often felt a sense of relief, when a patient has died who I have they are a fit 40-year-old, saying, ‘Well, I couldn’t possibly been struggling with for a long time and who has been a great cope in that situation,’ when put in that situation, the more burden to me. Doctors have emotions and weaknesses, and I they want to hang on to life. have been relieved, and this is another thing that worries me about legislation such as this. Sometimes it is a relief when Mr Downier Thank you. The reason I asked that is the patient dies to our own strained emotion, and if this was because there is a groundswell that living wills and perhaps allowed I think doctors, again, would more and more use this, the progression of passive euthanasia are going to become as a means to relieve their own anxieties and worries. more prominent. I was talking to a doctor the other day, this time caring for people, and he said, ‘Please don’t give us this power; I don’t Prof. Johnson: 1 think that power of attorney is probably think we can handle it.’ I was driving across to Manchester a better way of managing this than a living will. It is finding Airport yesterday, I passed a place called Hyde where a the will. Does it get stuck at the back of the notes? Will you certain Dr Shipman... I wonder if he started his career in this get hold of it when you need it? Enduring power of attorney area out of compassion for people? 1 do not know because he to a respected person I think can handle this better because has not spoken, but I can see that doctors are weak and they then you can look at discussion of the events and things like are human and they are not just perfect automatons that can that. I, for example, have had nobody who has come into be put in law, and I could see some doctors seeing this as an casualty department either, having taken an overdose, who easy way out for them, as well as for their patient. has come with a living will saying, ‘I don’t want to be treated You mentioned autonomy. Autonomy is fine, it is a for that.’ Maybe some people are having this but, of course, lovely concept. In fact, Prof. Gray, the extremely atheistic it has not had legal status in Britain, in the UK. philosopher, says it is a Christian concept, which is interesting. He says autonomy is a Christian concept, but it Mr Downie: J would just like to go back now to the must be within boundaries and autonomy is not in isolation, discussion you were having with my colleagues about the and relatives and families are getting very complicated now. delivery of some sort of euthanasia in the NHS context, I do not know, again, if it is happening on the Island, but we where you alluded to the difficulties that could exist where have so many splits in families, so many relatives wanting doctors had opted out, a doctor had opted in. I would just like different tilings, the effect of different relatives’ opinions on to get your view on how you would see this, when we have a this could get extremely complicated. Some want the person National Health Service which is dedicated to looking after to die, some do not want the person to die. Some want the people’s needs and providing care, and would you give me money, some want them to wait so they have the money later. a view whether you would perhaps think that, if legislation These are the sort of issues you have got to grapple with when came in to provide a route for euthanasia, this would be better you talk about autonomy for an individual patient. A patient practised other than within the National Health Service? is not in isolation, and at the bedside it is jolly complicated and a burden for doctors. Prof. Johnson: 1 think you might get special clinics being set up. What I have said before, in my further evidence, is I M r Rimington: In your introduction you mentioned think it is very difficult to combine these two, the ongoing Oregon and raised the issue there of the reasons that people care for the patient and then this. You might have to set have put on their requests and that they were increasingly up euthanasia clinics or something like that as a way of for non-pain reasons. Do you have knowledge of the Oregon handling this. statistics? If you are serious about a conscience clause in this, conscience clauses do have a way of getting not respected. Prof. Johnson: I am quoting from memory, this is the If I may illustrate, it affects appointments. I could see if you trouble. I had it the first year it was 12 per cent, the second were appointing somebody to a care-of-the-elderly post or year it was 20-something per cent and I think the peak it
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Prof. A Johnson 122 KCE SELECT COMMITTEE, FRIDAY, 17th FEBRUARY 2004 Oral Evidence rose to was 50 per cent or 60 per cent and then it levelled out. You may have them in front of you. I have not got them M r Rimington: Are you aware of the most recent version in front of me. of the Bill that has been -
M r Rimington: Luckily, I have. But if one is to introduce Prof. Johnson: No, I have not. a statistic like that, should it not be matched with a statistic for how many of those requests were either granted and then M r Rimington: - looked at in the United Kingdom? of the original requests, how many of those actually came to fruition at the end? Prof. Johnson: Oh, the United Kingdom? •
Prof. Johnson: At the end, yes, because it is a very small Mr Rimington: Yes. proportion of the - Prof. Johnson: Yes, I am aware of the United Kingdom Mr Rimington: Yes, I would like you to comment on Bill, yes. I am not aware of your own. that. I understand that the majority, because your description of the conflicts have been predominantly, if I might say, M r Rimington: It does not exist, so you cannot be doctor-focused or hospital-focused and the majority of the aware of it! Would you not agree that the latest version of people involved in Oregon are within the hospice programme, the Bill, mcdicaily-assisted dying, in the United Kingdom who have made the request through that programme rather is very narrowly focused and quite restrictive? I am not than being in the hospital ward scenario, and that, I think, criticising it for being so, but it is very tight in terms of as you said, the statistics would show that, of the original circumstances - requests, a quite significant proportion are not granted and then, of those that are granted, a very small proportion will Prof. Johnson: It is tighter, I think, yes. actually come to fruition. M r Rimington: - and safeguards. Prof. Johnson: Why do you think that is, though? Why do you think that they do not come to fruition? Prof. Johnson: Yes, I still think it is extraordinarily difficult how you would actually have those safeguards. M r Rimington: I was going to ask you. Is it because You have been to Holland, no doubt, and seen the Dutch of the very things that you said, that there are other reasons experience. I have not seen it, but I have just - sometimes behind this and that it is possibly a call for help in whatever direction, and that with the appropriate counselling M r Rimington: We have not. and assistance that is within the hospice programme, the palliative care programme, then that can be. But then there Prof. Johnson: You have not, right. are still those individuals with either a particular strength of feeling in that direction or particular medical conditions, or M r Rimington: But we obviously have been hearing whatever they feel that now they wish to continue. much. Prof. Johnson: Yes, they may see it as a back-up if care is not provided. The figures I have got, as I say, I looked at Prof. Johnson: But I think there was a small proportion the figures of a big Australian hospice. About 60 per cent but a very real proportion where it was not voluntary in their raised the issue when they went into the hospice but, of experience. That is constantly happening and it has not gone course, none actually came to it, because it was not legal in away, so I think you have really got to look at the details of that part of Australia at the time. So I think you are perfectly the legislation. You know Walton’s conclusion on the last right, that with good care and good counselling the numbers time it went to the House of Lords in the UK, that he could become very small. not be satisfied that you could prevent the pressure - and the words he used were ‘real or imagined’ - on elderly people M r Rimington: Would this not then negate some of your to go along with this - vulnerable people, he used the word concerns about its impact within the health service, in that ‘vulnerable’ people - how you could protect them from the it is there as part of the overall range of - a horrible thing to feeling that they ought to. It may be imagined pressure and say - options in certain very tight circumstances, but would not real pressure from their relatives, but it is there, and those in fact be the numbers. It would not be, ‘Ah, he’s done two, were the key words that he used. I have got the quotation he’s done three1; it would be struggling to find somebody somewhere, but what he actually said was the key words who has done one? that made his committee decide against it. I have got the quotation here: Prof. Johnson: But, you see, if it becomes an option, why shouldn’t it always be an option? Why shouldn’t it be ‘Vulnerable people - the elderly, lonely, sick and distressed - would a therapeutic option for everybody? That is’the way I think feel pressure, whether real or imagined, to request early death.’ people might think of it. We will have this in our thinking and this, I think in answer to Mr Anderson, was about the Mr Rimington: Obviously the Dutch experience has gradual effect on doctors’ thinking. They say, ‘Oh well, let’s been well trailed - put this in to our therapeutic option: we can operate, we can give palliative care and this is a third option.’ I think that Prof. Johnson: It has, yes. would not just be an option for the few. M r Rimington: - and we find that we have different
House of Keys Select Committee on Voluntary Euthanasia — Evidence of Prof. A Johnson Oral Evidence SELECT COMMITTEE, FRIDAY, 17th SEPTEMBER 2004 123 KCE versions of the statistics placed to us, and the one that you briefly on both occasions. Given that the proposed legislation relate yourself of the numbers of involuntary euthanasia is very narrow and very focused, is it possible to conclude has been explained to us that, in simplistic terms, looks that, in legislative terms, the slippery slope is working the potentially alarming, but behind those figures there are other way, in that, in fact, it is tightening up? actually very clear explanations of what that involuntary activity means, and that those figures for involuntary Prof. Johnson: I don’t like the ‘slippery slope’: it is a euthanasia compare statistically to the involuntary euthanasia sort of expression that is thrown about. I tried to translate which takes place within hospitals across the western world, it into French, once, and it ended up as a ‘soapy slide’, 1 but within the Dutch context it is being closely looked at, and think, because they do not have such a word! It is changes a figure has been put on it in relation to the whole. in attitude, as I said earlier, that worry me: subtle changes in attitudes that take place. All we have to go by in the UK, Prof. Johnson: But it must have been within the perhaps is the abortion law, which, of course, slid very legislation that it would be... They must document - or quickly from what was hopefully intended to be a relatively, don’t they document? but not very restrictive law to be being abortion on demand. That happened very quickly indeed. Now, that was a very Mr Rimington: It was an analysis of the... Well, no, loosely worded law, I do agree, a very poorly worded law. It because they would be prosecuted. may have been intended to allow this to happen when it was first drafted because it used very vague expressions, but 1 do Prof. Johnson: They must have them on the register not know - 1 am not a lawyer - whether you can in fact get a as - tight enough framework to stop this happening, but as 1 say, the Belgian experience does not encourage me. Mr Riniington: No, the Remmelink report, if I remember, was a confidential study of people within the hospitals who Mr Rimington: You did raise that article, the fact that were in those positions and, obviously, a practitioner who has there are two people, whoever, who are raising this issue done something which might be outside of legislation would of people who are not confident about the whole business, not be registering that. So, it did not come from registration i.e. how the law deals with their particular situations, does within the law, but actually a study of what is taking place. not in itself negate the whole process and they have no idea Is there a comparison that there is involuntary euthanasia what - taking place everywhere? Prof. Johnson: They know what is going to happen. Prof. Johnson: All I can say is that not in my experience on my set-up. Double-effect, yes, but 1 think that is a very Mr Rimington: They know what is going to happen. Their overrated thought, really. It does happen sometimes, yes. views may be completely ostracised and disregarded. Adequate pain relief can shorten life, but it may not actually and severe pain can shorten life too, so I think that it is a Prof. Johnson: Yes, but the climate of thinking changes difference of intent is the key thing and the difference of the and I did say that we have got very influential philosophers action and its effect, the difference between that and good writing prize-winning books saying this, that the value of palliative care. children is not very great. As the population gets older and But 1 do think, to come back to what we said earlier older, can you not see financial pressure becoming an issue on, just having a hospice is not the whole total of care and here? I can. I can see it very clearly; a great increase in the it has got to influence. I am speaking, as you asked me to, number of elderly people and the Health Service trying to from my experience as a hospital surgeon over many years grapple with looking after these. I could see in a few years’ and of course most of the deaths take place either at home time all sorts of other pressures, once you have a law to or in a general hospital, not in a hospice. The hospice is a allow this, strong pushing coming in to widen that, to widen small proportion and we must not look at one thing and say, it, strong pressure. ‘Oh, the hospice will solve our problems; send them off to That is why I just quoted that, that they want to widen it the hospice.’ almost as soon as it has started, but J can see this happening, Good palliative care has got to infiltrate the whole of in again a very subtle way, from the real burden we will have practice, and I heard a GP say to me the other day they are of looking after elderly people, which is us in 20 years, in really satisfied with a good death of a patient at home, and a few years’ time. more and more GPs are saying that they are really working to produce a good death at home, with all the care and the Mr Rimington: Okay, thanks. family around them and that they see it as a real triumph now of medical practice, which again would never be talked The Chairman: Thank you. Malachy? of before. It would have been a failure: ‘I haven’t managed to save this patient.’ So, that attitude is getting through to The Clerk: Prof. Johnson, do you see any material especially the younger general practitioners. Now they see difference in the conclusions you have suggested to this as a major responsibility in a home. And, of course, the Committee between passive euthanasia and active many patients would prefer to die at home, if they could euthanasia, if you accept that distinction? - not in a hospice. Prof. Johnson: Yes, I do see a distinction. Some people Mr Rimington: In your original letter of evidence to do not, but I have always seen it is a difference of intent us - and the expression has been introduced briefly - you and a difference of result, because I have had a number of used the expression ‘slippery slope’, admittedly only very patients where I have agreed not to give antibiotics or not
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Prof. A Johnson 124 KCE SELECT COMMITTEE, FRIDAY, 17th FEBRUARY 2004 Oral Evidence to treat certain conditions and that has not actually stopped have requested not to have certain treatment and probably them recovering. I remember very well a patient in intensive end up in their dying sooner rather than later? care: we said ‘we won’t give antibiotics’ - no, she was not in intensive care, she was in a general ward - and then she Prof. Johnson: Not to have a life-saving treatment, do actually recovered spontaneously from this and went out. So, you mean, or painkilling type of treatment? there is an actual difference in result from this. Obviously, we are not talking about that, perhaps, in this situation, but the The Clerk: Principally life-saving. passive side is not giving people painful and often ineffective treatments - 1 think that is what you have got to think about. Prof. Johnson: Yes, I can think of a handful of people Often these treatments are not effective that we say we are who have actually refused to have a potential life-saving giving to them, and we stop giving those. operation, but it has been a handful only in my time: very When you come to autonomy, yes, of course a patient has clear cases where, yes, if they had had it... You see, many got a right to refuse an operation, and I have had a number of the situations that we see they are unconscious anyway. of patients who have refused my operation, and they have They are brought in after a severe accident and you go ahead died as a result and I, as a surgeon, cannot operate on them and do it, assuming they would like it. We have got to make without their permission, unless they are unconscious and the assumption that they want the treatment. That is the unless I feel it is really in their best interest. So, if you like, only way you can work in that situation. Or they have been you could call that passive euthanasia, that they have refused in intensive care where they have been unconscious. But to my treatment. come back to the situation where they are fully conscious, know what they are doing, refusing carefully, I think it has The Clerk: Would you actually say that in perceptual been a very few once you have talked to them about the terms passive euthanasia is not really euthanasia at all? implications of it.
Prof. Johnson; I do distinguish between that, yes, The Clerk: This would arise in the context, would it between withdrawing or withholding and a direct intentional not, of what are commonly called life-support machines, act and, certainly, in practice, as I have said before to a life-support systems? number of questions, it is actually very different for the person, the people involved, at the coalface. Prof. Johnson: No, 1 think that is quite a different situation when you have got somebody on a life-support machine and The Clerk: Do you think that any of the same sort of I do not think that should be confused with active euthanasia. concerns that you have expressed about, if I put it this way, You mean taking people off life machines? real euthanasia, would arise in the context of patients actually saying that they did not want a certain type of treatment? The Clerk: If a patient said, ‘Take me off.’
Prof. Johnson: There is a difference, as I think I said Prof. Johnson: Well, they cannot if they are on a life in my original letter. I think there is a difference between a machine. person having the right to say, ‘I don’t want you to do this to me,’ and having the right to say, ‘I want you to kill me.’ I The Clerk: You mean they would not be conscious think there is a very important difference there. enough to do that?
The Clerk: Do you think patients would be under the Prof. Johnson: Yes, often. If they are on a breathing same sort of pressures, that there would be the same sort of machine, they are unconscious because of the effect of having dangers surrounding a request by a sick, elderly person not the tube down them and things. to receive a certain type of treatment? Mr Rimington: Do you have discussion with the Prof. Johnson: I suppose they could. Pressures from relatives? relatives, you mean, and things like that? Prof. Johnson: No, the relatives have not got any rights The Clerk: Yes. there.
Prof. Johnson: Yes. You see, we are very particular, M r Rimington: No, but there are discussions. of course, when it comes to consent. Relatives cannot give consent on behalf of a competent adult. I imagine the same Prof. Johnson: You can have discussions, yes, but they law here as it is in the UK and the whole idea of asking cannot tell you to do it, as you know, legally. I think a lot of relatives what they wanted has actually changed hugely, people think they can and a lot of the general understanding too, in my 40 years’ experience, and I do not know whether is that relatives can speak on behalf of their unconscious the pressure would be the same. I have not had any situation relative. where I can think that there was relative pressure on them not No, I am thinking of the equivalent situation to a person to refuse it. It has always been the opposite, in fact, in my asking for euthanasia who has to be fully conscious, compos experience. When the patient has refused, it is the relatives mentis and mentally sound. That is vanishingly rare, once who say, ‘Try and encourage them’, and say, ‘Can I talk you explain the implications of it. Once it happened to me them round to having this?’, once they have understood when a colleague of mine, a junior colleague, explained that it could help, to him in vivid detail the possible complications of the The Clerk: Have you seen any examples of patients who procedure, so vivid, because he felt he had to for legal
House of Keys Select Committee on Voluntary Euthanasia — Evidence of Prof. A Johnson Oral Evidence SELECT COMMITTEE, FRIDAY, 17th SEPTEMBER 2004 125 KCE reasons, that the patient said, ‘Well, I’m not going to have the experience after the abortion law was introduced in the that dangerous thing,’ and took himself out of hospital. It UK, so I cannot actually give you anything for euthanasia was actually a misunderstanding, really, of the balance of practice, but I can give you those surveys of abortion, who risks, which is very difficult to get across to patients and would be involved. Would you like those? it is another issue. They do not understand necessarily the sort of risks that you are trying to explain to them because The Chairman: Well, any evidence to support the you are doing it in statistical terms and they are trying to assertion that you made to us would be welcome, yes, please. understand the risks of not having treatment and the risks If we think about jurisdictions that have made the considered of having treatment decision to introduce voluntary euthanasia legislation, would you agree that they are all mature, democratic jurisdictions? The Chairman: Could I just revisit some points that I am thinking of Belgium, Holland, the State of Oregon. you have been good enough to raise? First of all, I think you described it as a large incidence of people not being appointed Prof. Johnson: I do not know the State of Oregon. They to posts - presumably you were referring to this in the UK and have done some very interesting things there in other areas, maybe you could clarify that - for healthcare professionals as well, but yes, I think they are democratic. who choose not to opt in to termination practices. Can you prove that or can you direct us to proof? The Chairman: And the healthcare professionals who opt in to accede to the persistent and informed requests of Prof. Johnson: I have seen two surveys. Now, it depends patients to provide a euthanasia service, they do that on the who does the survey, what questions are asked, but one said basis that (a) they will, as you say, attract perhaps tabloid 50 per cent of doctors would not be involved, the other said epithets and (b) that they might find some difficulty in their 75 per cent of doctors would not want to be involved, so two professional relationships and maybe even, as you described, recent ones. You may have your own surveys in the Island, their professional careers. What is the situation, from your I do not know. understanding, not just for doctors but other healthcare professionals who have made that professional choice in The Chairman: No, the point you raised was that that those places? would lead to them not getting certain appointments. Prof. Johnson: in Belgium or... ? Yes, I just have not got Prof. Johnson: I can see it that if they were wanting to the data on that, but I could find it, if that was helpful. be appointed to certain posts and a care-of-the-elderly post is something that I think is particularly relevant here, not The Chairman: But they are not excluded from the just palliative care and cancer. Again, it would not happen Dutch equivalent of the BMA or -? immediately. There could be an effect that people would be asked at the interview what their attitude was and if you Prof. Johnson: Oh, no, I do not think so. No. were trying to provide a service in this respect and they said, ‘Sorry, I am not going to be prepared,’ they might not be The Chairman: They are not on any particular list of appointed. All I can say is this has happened in the case of doctors who - ? abortion. So, what I was saying: a conscience clause in an Act does not always work, but if it does, it can actually lead Prof. Johnson: Again, 1 do not really understand the to either a two-tier system, two groups of doctors, those in question. I have not studied that particular aspect. and those not, a split medical profession, or it can lead to recruitment problems. The Chairman: Would it be fair, given your expertise and experience, that if that was the case probably - ? The Chairman: Yes, and where could you direct us to see the evidence to support that assertion? Prof. Johnson: No, I cannot say anything until... I would be very interested to find that question out actually, Prof. Johnson: The questionnaires? I could probably yes, whether it has become specialised. I would expect it to get that for you. become specialised amongst a certain number. That is why it would happen with time, I think. You would get a specialist The Chairman: And the evidence to support the group who would set up a clinic of some kind to do this, consequential assertion that people are not getting rather than it become a general thing. You may have, again, appointments, a large number in your description. the figures about the number of Dutch doctors involved in these figures, whether it is some doctors doing quite a lot or Prof. Johnson: We do not know in this respect, and the a few doing a little. I do not know the answer to that question point I also made was: in the UK, a number of the doctors, but it must be in the data there. a bigger proportion of the doctors working with elderly people, may be from ethnic minority groups. That was the The Chairman: And then finally, you touched on a trend other point I made. But all I can say is I have got evidence in Canada where your colleague foresaw that there would be that either people who would not do abortion would not a split between what 1 think you described as a Hippocratic even go for the post that involved abortions or they would camp and a non-Hippocratic. Would you be able to expand a not be appointed to it. It was only equivalent to the abortion bit on that and also give us your opinion on how that might experience. 1 have got no experience, say from Holland, come across the Atlantic to the UK? whether this actually has happened to doctors. I do not know but you may have that data. All I am extrapolating is from Prof. Johnson: Yes, I think quite a number of doctors
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Prof. A Johnson 126 KCE SELECT COMMITTEE, FRIDAY, 17th FEBRUARY 2004 Oral Evidence have actually signed up to a new form of Hippocratic Oath as speaking from a doctor’s viewpoint. 1 thought that is what and they have called themselves the Hippocratic Group of you asked me to do but, of course, a doctor has autonomy Doctors, saying, ‘We are not going to go down this line.’ as well. Of course, patients have autonomy, but neither the The size of that I am not sure, and he was just looking 10 doctor’s nor the patient’s autonomy is unlimited autonomy or 20 years down the line, and I think you could well get just to do what they like. a polarisation, two groups of doctors. I suppose again you could equivalent it slightly to the situation in the UK where Mrs Hannan: When you are suggesting that the medical Roman Catholic doctors will not do abortions, so you get a practice will divide out, one which you arc saying is the group that will not and a group that will and, therefore, you Hippocratic aspect - will get one sort of doctor who is practising in a different way. 1 think that is the sort of thing that they may say, but Prof. Johnson: Yes. you would declare that you are not prepared to do that. Mrs Hannan: - why are you suggesting that will The Chairman: And that would be the same for the UK happen? and Europe as it would in Canada? Prof. Johnson: Because a group of doctors will say, ‘We Prof. Johnson: 1 do not know what would happen are not going down this road of euthanasia.’ about that; it was just an international meeting where we were discussing this issue, and he just said he could see this Mrs Hannan: So, what is the difference between the happening in Canada, where, of course, you perhaps see other group then, the Hippocratic'group? What will they do the Catholic influence in one part is strong. I am not, by the differently to the people that could be involved or do not way, a Catholic. I am a Protestant Christian, when 1 said I have a great objection, because there are not many doctors was a Christian. But I could see that in Canada it might be that are involved in euthanasia. But what is the difference more polarised than it would in other countries, but all I am between them? Surely they are going to be looking after saying is that he saw this happen. their patients, they are going to be giving them carc, they I asked the Dutch person whether he could see it are going to be... You are suggesting there is one that will happening in Holland. He said not immediately but further kill and there is one that will not, when we all die? down the line he could see it coming to a stage where a group like the Hippocratic group did back in Greece saying, ‘We Prof. Johnson: No, there is one that will kill intentionally are not going to practise, we are going to have this, we are and actively, and there is one that will say that is a step too going to practise to a different ethical standard from our far. That is actually what will happen. We all die, absolutely, colleagues.’ but we are not all killed, and we do not all ask people to kill us. The Chairman: Is that compatible to have two camps working complementary to one another? Mrs Hannan: Is it killing? What we are looking at is voluntary euthanasia. That means a good death, which is Prof. Johnson: I think so, yes, as long as the patients will what you talked about before. know which is which. 1 think you would have to declare it, that is the important thing in all this: to be open and honest about it, not pretend you will and then not, or vice versa. Prof. Johnson: Of course.
The Chairman: Thank you for your candour earlier in Mrs Hannan: When people die they go into hospices. saying that practice decades ago was based on - perhaps They are helped with their pain and, ultimately, they die. ‘deceit’ would be too strong - but non-disclosure. There are not many people that are relieved of their pain and live for a very much longer period. But you are suggesting Prof. Johnson: It certainly was. I fought very hard and that there is the ‘Dr Death’ and there is the other very caring my ethical teaching was that truth is a fundamental thing to doctor and never the twain shall meet. start with in any ethics. You cannot begin until truth is at the top there, and I know in my time people were actually told Prof. Johnson: No, I am not saying that ‘Dr Deaths’ are to type out false reports on specimens to say they were not not caring, but they are saying, ‘When it comes to a certain cancer. You cannot believe this now, but I would say it is the point I am prepared to kill my patient.’That is different from hospice movement largely that has influenced this, because the care, it really is. You cannot say that you are going to you cannot tell somebody going to a hospice, they are going go up in cold blood to a fully conscious patient and you are for recovery by the seaside, and you had to be honest with going to kill them. 1 cannot see that you can get away from them when they went, and this has made people be honest. that as a direct act. They may still do it with compassion in So, this whole talking people through their illness gently and their mind, although over the 40 years - carefully has transformed, over these 40 years, the whole care of patients for the better. We often say things have got worse Mrs Hannan: But it is not like you and me today sat with time, but I think there has been tremendous - there and waiting for the doctor to come along and whatever, however; it is somebody who is seriously ill, terminally ill, The Chairman: Yes, and that is a function of making who would request this. I could not see anybody - this a patient-centrcd process. Prof. Johnson: They must be compos mentis, fully Prof. Johnson: Patient-centred, yes. I saw myself today alert.
House of Keys Select Committee on Voluntary Euthanasia — Evidence of Prof. A Johnson Oral Evidence SELECT COMMITTEE, FRIDAY, 17th SEPTEMBER 2004 127 KCE
Mrs Hannan: Well, they would have to be to make that have the right to request me to do that,’ and, as I say, Diane request, unless they have got a living will, but I just think that Pretty was tested right up to the European Court, very clearly you are seeing it as very black and white, and I think there is in great detail, and they said no, that was not part of the a difference. I think there is, and I think you are suggesting European Declaration on Human Rights, to have the right that there is one lot of people out there who are uncaring and for somebody to kill you. I do not see how you can get round will kill people and other people who are caring and will not, the European Human Rights Act. Any legislation that I see but we are all going to die at some time. - again, I am not a lawyer - would be countered -
Prof. Johnson: No, I have never said anything about Mrs Hannan: But she was not asking for medical help, the other group being non-caring. Please, I talked about the was she? I think we ought to get that quite clear. doctor who had cared for his patients lovingly and carefully for weeks and months and then is asked to kill that patient Prof. Johnson: So, why should doctors be different at the end of all that care. I am not saying they are uncaring. from that? Why should you exempt doctors from the Human They could become uncaring. As I have said, I think this is Rights Act and not a relative? Why should we be put in a one of the troubles: they could become uncaring doctors; special category? but that is not the motive that doctors involved would be... But I still think there is a very definite distinction between Mrs Hannan: I just wanted to make it quite clear that direct cold-blooded killing - which it is and you cannot get she was not asking for medical assistance; she was asking away from it - and gentle dying. for her husband to not be criminally involved. The word ‘euthanasia’, perhaps, has been taken out of context because the whole of palliative care is euthanasia, Prof. Johnson: But if you bring in legislation you are which you rightly point out; it is a gentle and good death, asking for doctors to be in exactly that situation, aren’t but this is a step too far. Jt gives doctors powers I think they you? You are saying that doctors should not be criminally should not have, or the State powers it should not have, and involved if they do the same thing. It is precisely the same there is a whole group of doctors out there who will say, ‘I issue but you are applying it to doctors and not to a husband am sorry, I do not consider this part of my medical care and or relatives. training to go that one step further,’ because of all the attitude changes I have mentioned, the way would open up. M rs Hannan: You would be developing a law that It is not the same as an unconscious patient on a ventilator protected whoever was - slowly drifting out. It is an intentional act with me going up with a syringe and injecting a lethal dose and I would find Prof. Johnson: I think you have got to ask whether that - and many of my colleagues would find that - extremely that - difficult. You cannot get away from it, that it is an intentional act of killing and it should be called that, I think. ‘Suicide’is Mrs Hannan: And you are also protecting the patient a better word than ‘euthanasia’. ‘Physician-assisted suicide’ because you would also be expecting the doctor to register is, ] think, a much more honest title, which I think are the that that person has been involved in a voluntary euthanasia words used in one of the Acts I have seen. aspect and also the doctor, so it would protect the doctor as well. M rs Hannan: Let us look at the hospice movement. The hospice movement is actually there to give palliative Prof. Johnson: Are you, in doing so, actually care, but many of those patients want to live and yet they counteracting the European Declaration of Human Rights? are going to die, and it could be that in the same aspect they I think you have got to look at that from the legal point are given sedation, they are helped with their pain and the of view, carefully, because Diane Pretty’s case was tested result is that that person dies. right through that Court and was thrown out very firmly. So, you are saying that you want doctors, as a special group, Prof. Johnson: They are going to die, but the intention exempted from that and, as I told you, I think doctors are a is completely different. You are giving them pain relief. You vulnerable group and they are not a perfect group and I think are helping them to have a gentle death and to stay conscious you are going a huge step to put doctors in that position. as long as they can during that process. ‘Please do not give us that power’ would be the request of a number of colleagues I have spoken to. Mrs Hannan: I am just concerned about you using these two sets of doctors as one on one side, one on the other, The Chairman: Thank you very much, Professor. when we do have a hospice movement. There is a hospice Before we conclude, could I just give you the opportunity, movement throughout many of the countries that we have if you want, to make any comments in summary or for spoken about - even Oregon has got a hospice movement qualification. now - and at the end of it people are unfortunately going to die. Prof. Johnson: Thank you very much. I think we have covered in great detail all aspects. I hope I have been of help Prof. Johnson: The whole process is about caring for that to the Committee. patient and giving them a gentle death but, as I say, there is a very strong group of doctors in many countries who say, The Chairman: Thank you very much for your time and ‘1 consider that not part of my medical training practice or making the effort to come and visit us, and I am glad you ethic, to intentionally go up to a patient and kill them, and have brought the good weather with you. I hope you will the patient has not got autonomy to such a degree that they have a chance to enjoy the Island.
House of Keys Select Committee on Voluntary Euthanasia - Evidence of Prof. A Johnson 128 KCE SELECT COMMITTEE, FRIDAY, 17th FEBRUARY 2004 Oral Evidence
Prof. Johnson: Thank you. I had a bumpy arrival last in preserving life and protecting the vulnerable. night. My welcome to the Isle of Man for the first time was . I wonder if you could give us a view on what is meant by interesting. the ‘interest of preserving life’, ‘protecting the vulnerable’ and, actually, does a person have the right to do what they The Chairman: Thank you once again. want with their own life or are there legal implications? I Ladies and gentlemen, what I propose is we will have a know that when a person dies under suspicious circumstances very short break before the Attorney General gives evidence, or perhaps, sadly, commits suicide, their body is seized by so perhaps if we could adjourn, just briefly, until ten past by the Crown and an inquest is held. So, I wonder if you could the clock behind us, and we will reconvene at that time with just give us an overview on how the law is, in relation to the Attorney General. those issues.
The Committee adjourned at 12.05 p.m. until 12.10 p.m., The Attorney General: Thank you, sir; thank you, Mr when H M Attorney General was called. Chairman. I feel that these are extremely interesting and difficult questions in many ways and, as I say, I wish I had come better prepared to deal with them, but insofar as the issues are Procedural concerned, I think it is right to say that there is a legitimate interest in the State and in our country to preserve life, and The Chairman: Right, ladies and gentlemen, a 1 think that the Attorney General actually has a particular pleasure to welcome Her Majesty’s Attorney General to the role in relation to that. Committee. J think, sir, you are aware of the remit of the The Attorney General, on behalf of the Crown, of course, Committee and thank you very much for your attendance. has a duty to ensure that the criminal law of our country is 1 know you are aware of who the Committee all are, so we enforced and whereas the offence of suicide, which was will dispense with personal introductions. contained within our Criminal Code 1872, has been repealed The format that we have offered witnesses giving by the Criminal Law Act 1981, nonetheless we still have evidence to date has been to offer them an opportunity to the offence of aiding and abetting another who wishes to make an introductory statement, if that is appropriate, if that commit suicide. So, to that extent you can see it is clearly is what they wish, and then we go into a question-and-answer set out that the State, as represented by the Attorney, has a and then afford you the opportunity to make any concluding duty and an interest to ensure that anyone who aids and abets comments that you feel would be appropriate. Might that be another to commit suicide will be prosecuted and, indeed, an acceptable format for yourself? there have been prosecutions along those lines in the recent past in our courts. The Attorney General: Yes, Mr Chairman, thank you. That, of course, is a rather stark way of putting it. Not all 1 must say I was not aware that I would be required cases are as clear-cut as that where an individual is guilty of, to make an introductory statement or, indeed, to make a and clearly guilty of, a breach of our criminal law. Far more general contribution to the business of the Committee. As I interesting and delicate issues arise when we have someone understood it, there was a specific issue which the Committee like Mrs Pretty who was faced with a very drastic end to her were concerned about in relation to the law of the Isle of life, one which the judges clearly had great sympathy with Man on the question of suicide, and it was in relation to and, nonetheless, whilst identifying the terrible situation that specific issue that I had come prepared. So, of course, that Mrs Pretty and her husband faced, were determined to I will try to help in any other way I can, but I am afraid I reiterate the duty of the State to preserve life. will disappoint the Committee if you wish me to elaborate It is, of course, a balancing act or balancing exercise. further. On the one hand, having sympathy with someone who is struggling with a terminal illness... and I have to say that The Chairman: Thank you for that. What we will do I feel quite sure that the medical profession and nurses are then is go round the table and ask if there are any points very alive to the huge problems which face patients and, of particularly on that specific issue. David, can 1 begin with course, they are increasingly experts in mitigating pain and you? suffering towards the end of a person’s life, all of which of course is entirely outside my competence, so I cannot really Mr Anderson: Not on that specific issue, so maybe you help the Committee on that at all. had better go elsewhere, Mr Chairman, first. But I am saying in a very roundabout way, and I apologise for that, that there is on the one hand the clear, black and white case where the criminal law intervenes, and there is a prosecution if someone seeks to aid and abet a suicide, and EVIDENCE OF H M ATTORNEY GENERAL on the other, where a person is coming towards the end of his or her life, I think that the State recognises that in the Mr Downie: Mr Attorney General, I wonder if you could treatment and care of patients perhaps the criminal law has clarify for us what is meant: I will read to you a judgment that to adopt a softer edge, if I can put it that way, and they are was made in the Diane Pretty case where she appealed to the very alive to the hugely difficult issues which face nurses Law Lords about the right for herself or her husband to assist and doctors. her in dying. As you know, that case went on, eventually, to Of course, again, if the doctor or nurse errs too far and the European Court of Human Rights, but in both instances is seen to be accelerating death in an unreasonable way, the judges felt that any arguments premised in respect for then that person will be exposed perhaps to murder or patients’ autonomy were outweighed by the State’s interest manslaughter. But, of course, there is that again, perhaps a
House of Keys Select Committee on Voluntary Euthanasia — Evidence of Prof. A Johnson Procedural House of Keys Select Committee on Voluntary Euthanasia - Evidence of H M Attorney General Oral Evidence SELECT COMMITTEE, FRIDAY, 17th SEPTEMBER 2004 129 KCE clearer case, and on the other hand a case where the patient 1 do feel, I have to say, that it would be a very brave is suffering intolerable pain and the duty of the medical step for this Committee to recommend the introduction profession is, as it were, to ease the passing. Hugely difficult of legislation which was not in line with that currently in questions which I think were recognised by the House of force in the UK. I think that it would create tremendous Lords in the Pretty case and they were invited by Counsel difficulties for the professionals in the medical world if they for Mrs Pretty to say that the Human Rights Convention gave had to apply different standards in the Isle of Man than in Mrs Pretty the right to terminate her life with the assistance the United Kingdom. of her husband but the Law Lords felt that that was going I suppose also if you look at disciplinary matters, if too far, that you could not lay down a black and white rule, there were to be an allegation that a doctor or a nurse was as it were, like that. guilty of professional misconduct in the Isle of Man and As I say, I have not researched the matter carefully, different rules applied here than in the United Kingdom, but it seems to me that the judges will recognise the huge it would not perhaps be possible to introduce or to bring dilemma that the caring professions have to face when over professionals from the United Kingdom who could people are reaching the end of their lives in very difficult adjudicate those disciplinary matters. I think doctors need circumstances. I am sorry, this is a very round and about way, to have the comfort that if they are trained and they have but it is not an easy question to answer. There are almost their experience in the United Kingdom they can apply the philosophical issues and ethical issues raised by the points same rules and practices here in the Isle of Man. That is my you have raised, sir. personal view.
M r Downie: Well, I think it highlights the complex M r Downie: I just want to broaden this a little bit, then, nature and the very sensitive issues that abound within this and ask you: obviously, with your legal background, prior to particular subject. I do not know whether you have had any becoming the Attorney General, you were in private practice. opportunity yet to cast your eye over Lord Joffe’s Bill? Have you any experience of living wills and putting together a document that enabled a person to request certain things The Attorney General: I have it in my papers. I have happen to them if they were suffering from certain illnesses not considered it yet. or terminal illnesses, for instance, or in fact which led to them requesting a form of passive euthanasia? M r Downie: Right. One of the issues that arise is that currently the British Medical Association Royal College of The Attorney General: Certainly, when I was in private Nursing, the vast majority of people working in the medical practice I never had a request for a living will. In fairness, I profession in the Isle of Man are bound by the rules and suppose the concept of a living will has probably developed principles which those bodies adhere to. I think one of over the last few years. 1 think it probably originated in the difficulties that we face, as a Committee, in looking at America. It is more popular there. But at that time there legislation is that, at the present time, these bodies appear to was no request for a living will. I have, of course, answered be vehemently opposed to any change in the law. questions in Tynwald in relation to living wills. Again, I I would just ask for an opinion, really. If the Committee would anticipate that these will become more formally were to determine that a Bill could go before the House of recognised by the law, but I am not aware of any judicial Keys and were successful, is there any way that the law in authority on it at the moment. the isle of Man could be framed or couched in a certain way / to give comfort to doctors who are working here, where they M r Downie: If a person went to an advocate at the are obviously going to be in conflict with their parent bodies present time and made a living will, would that have some or with their governing bodies? I do not know whether a legal standing in the Isle of Man, if perhaps their wishes similar situation exists within the Law Society, whether the were not honoured when they went to hospital? Would it code of ethics applies there and applies here on a similar lead, maybe, a consultant to be in breach of some form of basis? It is a very interesting situation. ethical misconduct?
The Attorney General: Yes. To answer the last point The Attorney General: I think, as I indicated in my first, the Law Society in the Isle of Man does adopt the same answers in Tynwald, a living will would, in my view, be principles for dealing with clients as are adopted by their recognised by the healthcare professionals to the extent that fellow professionals in the UK and that makes obvious sense. the living will did not contain directions which conflicted I think you will find that the Law Society’s practice rules here with the medical professionals’ view of the case. So, provided reflect solicitors’ practice rules in the UK and indeed, to the that the wishes were consistent with the patient’s welfare, extent that they are relevant, the barristers’ code of conduct the living will would be recognised. and etiquette, and that is entirely right, it seems to me. So, I would imagine that if, for example, you had a The fact that we have a separate jurisdiction here, and we situation where maybe the children of the family knew that are very proud of it, should not lead to the conclusion that a parent had made a living will and the wishes in that will we should adopt different professional standards. I think we were not being recognised by the healthcare professionals, can always learn from the bigger jurisdiction which often it would be possible, I would imagine, for the family, for has more exposure to these issues and more exposure to the the children to go to the court and seek some sort of order problems and very careful research by the learned members that the wishes be adhered to. But it is a very difficult area. of the committees of Parliament who look at legislation Whether the court would assume jurisdiction, I just do not there, and it seems to me, certainly from a lawyer’s point of know. It is an area we have not gone into yet. view, we can all learn from the very learned judgments of the senior judges in the United Kingdom. M r Downie: It was suggested by our previous speaker,
House of Keys Select Committee on Voluntary Euthanasia - Evidence of H M Attorney General 130 KCE SELECT COMMITTEE, FRIDAY, 17th FEBRUARY 2004 Oral Evidence
Prof. Johnson, that perhaps a better way or a more positive think in the area of so-called social issues, which you might way to progress a living will would be to appoint somebody categorise this as being one, the UK in my view would be with a power of attorney to act. cautious about recommending Royal Assent in relation to a Bill which radically departed from the law in England. The Attorney General: Yes, well, of course, the concept The example I would bring to mind would be, I think, of an enduring power of attorney is well known. We have had a Private Member’s Bill that was suggested at one stage in those in the Island for a long time and the Committee will relation to the medical use of cannabis some time ago and no doubt be aware of the fundamental point there that even a Bill was developed here and it was made quite clear that though you become incapable of managing your affairs, the the United Kingdom authorities would be very reluctant to power of attorney continues to have effect. Under the old law, see the Isle of Man go off on a tangent because the medical as soon as you became incapable of managing your affairs case had not been made out and not been established for the the power of attorney came to an end, which was a nonsense medical use of cannabis. really because the whole purpose of having the power of I do not, obviously, want to go down that debate attorney was to ensure that it endured the incapacity. So I specifically, but it seems to me that that is quite a good would have thought again that if you had, say, a son who example of the concern which we might anticipate if we had been given an enduring power of attorney by his mother, were to bring forward a Bill which was against the current mother becomes very ill, the son would have a great deal of law in England. Again, my personal view, but that would influence on the decisions which were taken in relation to be my expectation. his mother’s illness. M r Rimington: Just to confirm, the UK does have the M r Downie: What would be the position then if a person right of not granting Royal Assent, doesn’t it? got to such a state that under the Mental Health Act their rights had to be determined by an advocate who would be The Attorney General: Absolutely, yes. appointed by you, for instance, when a person becomes - 1 am not sure of the terminology, I do not know whether it is The Chairman: Is there a precedent for that situation, ‘insolvent’ under the Mental Health Act or - where we have passed legislation and the UK have refused to assent? The Attorney General: Incapable. M rs Hannan: The radios. M r Downie: Incapable under the Mental Health Act. So, you would appoint somebody in that position, is that The Attorney General: I suppose so, yes, in relation the normal practice? to wireless telegraphy and so on. The practice, I think, is that we always try to avoid such a conflict by having early The Attorney General: Not always, no. As Attorney consultation. It would now be with the Lord Chancellor’s General, under the Mental Health Act I have limited powers Department (LCD). In other words, my Chambers, having for dealing with a patient’s affairs. If there were to be some received drafting instructions, would make early contact decision about the patient’s medical welfare, I would not with the LCD and enquire whether there is likely to.be a have any jurisdiction in relation to that and the court would problem with Royal Assent. So, often we steer clear of any have to appoint a receiver and the receiver would have some such conflict. role to play. Iv of course, do have standing to go to the court if I felt that a patient’s affairs were being prejudiced. If a The Chairman: So, you would have advice or complaint was made to me then I could intervene and apply notification or some indication from the UK, from the LCD to the court. That is not as a receiver for the patient, it would or whoever, that there would be unease about assent for this be as Attorney General. specific legislation.
M r Downie: The point I am raising is: that responsibility The Attorney General: Oh no, I have not even raised it for someone’s care is opted out to somebody else, which with them. No, I was just speaking in the abstract in general further complicates the situation when you are talking about terms. The only example that, as I say, came to mind was in introducing legislation which could cover assisted euthanasia relation to the Private Member’s Bill on cannabis. or assisted suicide. Okay, thank you. The Chairman: So, as I understand it, and perhaps you M r Rimington: Forgive me if I am springing something could amplify - on you, but, obviously, the Attorney General’s Chambers have constant contact with the authorities in the United. Mrs Hannan: Guernsey. Kingdom in relation to the Royal Assent that is given for legislation that is passed in the Isle of Man, some of which The Chairman: Yes. Domestically, we can pass is obviously the authority delegated to the Governor, but by legislation as long as it is reasonable * the balance of that no means all of that. If legislation were to be passed in the would be whether it goes through the Keys - as long as it Isle of Man and such legislation was not there in the United affects us, notwithstanding your misgivings about being Kingdom and appeared not likely to be there, would you out of sync with the UK professional practices and the foresee issues in relation to the granting of Royal Assent? consequential issues that might bring, but that would not interfere with good government. There is a good government The Attorney General: Yes, Mr Chairman, Hon. test and would this legislation, if it was passed here, Members, I think that one would anticipate some difficulty. I constitute a breach of good government?
House of Keys Select Committee on Voluntary Euthanasia - Evidence of H M Attorney General Oral Evidence SELECT COMMITTEE, FRIDAY, 17th SEPTEMBER 2004 131 KCE
The Attorney General: In the context of medicare? who are resident on the Island, say, so we could have perhaps Tynwald undoubtedly. Tynwald must be the ultimate arbiters in regulation a requirement that peoplcwould only be subject of that, having consulted widely with the people who have to legislation if they had been here and if they could prove the expertise. they had been here for, say, six months. I am seeking to avoid the scenario - Mrs Hannan: We do have a hospice movement. Do you think there are enough controls in relation to the hospice Mrs Hannan: No, the legislation in the UK is 12 months, movement in relation to deaths that occur there, registration, proposed. those sorts of issues? The Chairman: Well, a period, a long-term period. The Attorney General: I am certainly not aware of any problems in that respect. As Attorney General, I have never The Attorney General: Yes, I would have thought it had any complaints or concerns registered. would be very sensible to have some sort of connecting factor between someone who wishes to end his or her life here in Mrs Hannan: I am not talking about complaints. I am accordance with Manx law and if there were not to be that talking about the actual operation of care of patients and - sort of connecting factor then the danger is that you have people, patients, forum shopping or they find the jurisdiction The Attorney General: I am not aware of any concerns which gives them the most easy answer to their problems. I having been - think Switzerland has often been mentioned.
Mrs Hannan: - consents and those sort of issues. The Chairman: There would be no difficulty to have regulation or in legislation itself to tie that loophole very The Attorney General: Outside my experience firmly? altogether. I am aware that there have been concerns expressed in England in relation to the issue of death The Attorney General: No, I think that would be very certificates and so on and again, if best practice is developed proper. there, I would have anticipated that the medical profession would want to adopt the same principles here. The Chairman: So death tourism would not be an option we need to trouble ourselves with, given that reassurance? The Chairman: Mr Attorney, could I ask you, you have described almost a spectrum of how you might anticipate the The Attorney General: Yes, I quite agree. responses from the UK, if we were to proceed with legislation and pass it here about voluntary euthanasia. Tell me if you The Chairman.*' Yes, and in your opinion, voluntary think it is fair to describe it as, at one end, raised eyebrows, euthanasia legislation or patient-assisted suicide - whatever I think you described, anxiety through to declining assent. the term we employ, but that concept - would that be an What would your best estimate be of the response from that extension or could that be reasonably viewed as an extension spectrum? of what I think you described as the ‘softer edge of medical treatment’ and the uncertainties around that? The Attorney General: It is difficult forme to comment because I do not know what the content of the Bill is likely The Attorney General: I suppose it probably is in the to be. I do not know how the Committee, what approach sense that the parliament here would be recognising that you are formulating. As 1 say, perhaps in a very facile way, there are cases where a patient ought to have the right to if 1 could just repeat the point that if we depart too far from terminate his or her life in extremis, when there is no way the legislation in the UK we are likely to have Royal Assent of avoiding this horrible circumstance that might be facing turned down. The more that our legislation accords with the him or her, and that is a view that many people share and it current UK legislation, the more likely it is, it seems to me, is for Tynwald to assess whether that is a correct approach that the Royal Assent will be granted, but it is very difficult and weigh up the counter arguments. But I think that does for me to give odds on what might or might not happen. accord with, as I said, the softer edge of medical treatment with which many people have sympathy. The Chairman: But it would be fair to say that the UK,'through Lord Joffe’s revised Bill that he has, accept The Chairman: Sorry, I am hesitating, Mr Attorney, that this is a legitimate issue of public concern and one for because I had a question in my mind which has now escaped legitimate debate? me so if you could just bear with me. But thank you. The remit we particularly asked you here for was to do with legal The Attorney General: Yes, and perhaps if I could put ownership of a person’s body. Are there any comments that it this way, sir, that if this Committee were not sitting and you have not covered on that that you would like to expand this was not in the public arena now, I am quite sure that I on? would be notified of the Bill and the Act in Parliament, as indeed I have been, and I think it would be my duty to bring The Attorney General: To be frank, I was rather it forward to the Council of Ministers as a matter which surprised to see any reference to ownership of a legal body. requires attention. It is, in my view, entirely proper that our I have never really approached the issue like that before. I legislation should mirror the UK legislation in this area. suppose I seem to recall in the criminal law books there are The Chairman: Are there any restrictions on our offences in the old days of body stealing and body snatching capacity to make legislation that would only relate to people and so on, of corpses, but, more seriously, the individual
House of Keys Sclect Committee on Voluntary Euthanasia — Evidence of H M Attorney General 132 KCE SELECT COMMITTEE, FRIDAY, 17th FEBRUARY 2004 Oral Evidence
owns - if you can describe it in terms of ownership - his or actually involving the medical profession to the same extent? her body and I suppose in many ways has the right to abuse You are not asking someone to physically take your life. that body as he or she thinks fit, provided that it does not breach the criminal law of our country. So, many people The Attorney General: I do feel, with the greatest would be horrified at the things that others do to their bodies, respect, this is an area I really cannot usefully comment on. but you cannot complain about that in the courts unless it Speaking entirely as an individual, there must be anxiety offends our existing law, about that and we would just have to abide by best practice medical opinion, and so on, as to how that should be dealt The Chairman; Suicide did offend the law previously with. Some might prefer to take the fatal draught in the but no longer does, but aiding and abetting still does, just privacy of their own home, others might wish to go into for clarity? a hospital and have, perhaps, doctors supervise it. I really cannot say. I am sorry 1 cannot help you on that. The Attorney General: Yes. Mr Rimington: If I may just introduce, for the benefit The Chairman: The question I wanted to conclude with of the Committee and the Attorney General, the House of was if we introduce this form of legislation, would that put us Lords and House of Commons Joint Committee on Human in conflict with either any international obligations beyond Rights looked at the recent Bill from Lord Joffe, as the report our relationship with the UK, or, indeed, with the contents of is listed officially, and considered that it did not, except in the Human Rights Act and the wider legislation of that? one area... I think it was: in all areas it was compatible, or there was not a significant risk of incompatibility, but in the The Attorney General: Well, it would be my duty area of conscientious objection they believed that there was, as Attorney General to give advice as to whether the Bill as presently drafted, an area, in that if a physician wanted to accorded with the Human Rights Convention and, indeed, not take part because of his conscientious objection, there Human Rights treaties generally, and so, if I considered, on was an obligation potentially on that physician to pass the advice, that the Bill offended international law, international patient on to somebody who did not think so, and, therefore, conventions, 1 would have to make that clear to Tynwald. the Committee felt that that obligation to take a further step was incompatible with Human Rights and that there should The Chairman: Presumably, Lord Joffe has been through not be the obligation to say, ‘Well, I don’t want to do it,’ the same considerations before he introduced his Bill. and you should be able to say, ‘That’s it, full stop,’ not have to then find somebody else who might. That was their only The Attorney General: I would imagine so, yes: we comment. normally find a certificate that it accords with the Human Rights Act and 1 would have to do the same thing. The Attorney General: Well, I think that 1 would have the same concerns. Let me put it this way: I would certainly The Chairman: On that basis, would it be reasonable have the greatest regard to the views which have been to say that you would not foresee any conflict with Human expressed by the Human Rights Committee in England on Rights, if the UK has accepted it on that basis? that.
The Attorney General: 1 would be very surprised if my The Chairman: My colleagues have indicated they opinion contradicted the legal advisers in the UK. have no further questions so, Mr Attorney, if you have any concluding comments maybe? Mr Downie: One area that is being progressed in other jurisdictions, and 1 can quote Oregon in this instance, is The Attorney General: I do not, sir, thank you. It is where assisted suicide or euthanasia is available for the safe to say that I do appreciate that these are extraordinarily individual who wishes, for whatever reason, to terminate difficult issues. From a lawyer’s point of view, sometimes their own life. the most difficult issue is whether prosecutions have to So, what 1 am suggesting is that they can apply to have arise in these sets of circumstances and it seems to me that a draught prepared and, provided that they take that draught anything that can be done to make that decision easier is for themselves, there is a provision in the law to say that that the good of ail. is legitimate. So, that is taking assisted suicide to a new position, where it is self-administered. If that area were being The Chairman: I apologise for keeping you waiting pursued here in the Isle of Man and we, for example, were earlier, and thank you very much for your attendance. I think saying if a person wants to end their own life and they want that concludes the sitting for today for the public hearing. to do it that way, provided they satisfy a number of criteria Thank you again, Mr Attorney, ladies and gentlemen, for - which is the situation in America, as I understand - and your attendance. they take that fatal draught, would you see the same areas of concern or future complication, when really you are not The Committee sat in private at 12.55 p.m.
House of Keys Select Committee on Voluntary Euthanasia - Evidence of H M Attorney General Appendix 4
House of Keys Select Committee Notice of Invitation for Written Evidence
Government Notice
SELECT COMMITTEE OF THE HOUSE OF KEYS
ON VOLUNTARY EUTHANASIA
On 13th May 2003 the House of Keys gave leave to Mr John Rimington MHK to introduce a Bill to enable a competent adult who is suffering as a result of a terminal or a serious and progressive physical illness to receive medical assistance to die at his own considered and persistent request, to make a provision for a person suffering from such a condition to receive pain relief medication, and for connected purposes.
Leave to introduce the Bill was qualified by the requirement that, before it should be introduced, a Select Committee of five Members should take written and oral evidence on the subject matter of the proposed Bill and report to the House.
The Members elected to the Select Committee are: Mr Q.. Gill MHK (Chairman), Mr D.M. Anderson MHK, Hon A.F. Downie MHK, Mrs H. Hannan MHK and Hon J. Rimington MHK.
The Committee invites written evidence with regard to the proposed Bill to be submitted to the undersigned no later than 30th September 2003 . In view of the likelihood that many witnesses may seek to give oral evidence to the Committee in addition, it would be helpful If submissions would indicate whether the persons making them wish to give oral evidence and why they wish to do so. The Committee will subsequently decide which witnesses to call for further evidence.
Maiachy Cornwell-Kelly
Secretary to the House of Keys
Legislative Building
Douglas, IM1 3PW
Appendix 5
Public Written Submissions Reference Name Organisation Address N um ber 1 Mr D Bauer Kirk Michael 2 Mr R Field Kirk Michael 3 Mrs D Gelder Kirk Michael 4 Mr D Gelling Santon 5 Mr and Mrs P Lo Bao Castletown 6 Mrs C Marshall Onchan 7 Mr M Houghton Sheffield, UK 8 Mr J Kelly Douglas 9 Miss J Rock Douglas 10 Ms D Annetts Voluntary London, UK Euthanasia Society 11 Mr J Pollins Douglas 12 Mr F Tilston Douglas 13 Mr and Mrs Murcott Douglas 14 M and J Hartley Peel •15 Mr and Mrs Curwen Port St Mary 16 Father G Hurst Castletown 17 Mrs F Rennie Ballabeg 18 Mr A Hewitt Port St Mary 19 Mr N Me Farlane Port Erin 20 Mr J Payne Douglas
N> Mr R Oake Colby 22 Dr G McAll Sheffield, UK 23 Mrs I Akter St Johns 24 Mrs S Pelling Douglas 25 Mr R Fayle IOM Douglas Medical Society 26 Anonymous Mother's Union 27 Mr K Markham Douglas 28 Dr K McDowell Douglas 29 Mrs C Best Douglas 30 Mr and Mrs Fargher Onchan 31 Mr D Hayes Baldrine 32 Mr and Mrs Karalius Port St Mary 33 Mr and Mrs Durkin Derbyhaven 34 Anonymous - 35 Dr F Baker Onchan 36 Anonymous Scotland 37 Mr A Jessop Ballaveare 38 Dr A Cole The Catholic London Union of Great Britain Reference Name Organisation Address N um ber 39 Mr S Stock Douglas 40 Mr G Burrows West Midlands, UK 41 Mr J Masson Douglas 42 Mrs E Chowdharay- ALERT London, UK Best (Against Legalised Euthanasia Research and Teaching) 43 Ms G Gerhardi 44 Ms R Hurst DAA London, UK (Disability Awareness in Action) 45 Ms D Whxtefield Glen Vine 46 Mr E Tory Maughold 47 Dr A Stone Onchan 48 Mr A Cain Ramsey 49 Mr G Jensen Ballabeg 50 Ms T Burrows Kirk Micheál 51 Miss M L Habgood Ballaugh 52 Dr S Denniston Birmingham, UK 53 Ms S Aspis Changing London, UK Perspectives 54 Mr R Shimmin Douglas 55 Mr S Baker Onchan 56 Mr R Green UK 57 Mrs J Kneale Castletown 58 Ms L Cottier Port St Mary 59 Mr D Cattle Douglas 60 C M Brooks Society of St Peel Vincent de Paul 61 Mr and Mrs Anderson Peel 62 Mr Phillips Colby 63 Mr P Bryden Sulby 64 Mr B Harding Douglas 65 Mrs L Walraven Glen Vine 66 Mrs P Dalrymple Glen Vine 67 Ms J Pearn Isle of Man Ballaugh Religious Society of Friends 68 Mr and Mrs Preston Castletown 69 Mrs S Richardson Peel Reference Name Organisation Address N um ber 70 Mr F D Newton Douglas 71 Mrs M Kneen Port Erin 72 Mrs H Quirk Port St Mary 73 Mr R G Taylor Douglas 74 Ms M Spiers Douglas 75 Mrs Walls Castletown 76 Mr I J A McDonald Knights of St Douglas Colombia 77 Mr and Mrs Watts Ramsey 78 Mr and Mrs Tickle Ballasalla 79 Ms A DA vies No Less London, ‘UK Human 80 E ] Moore St Johns 81 Mr P Burrows Ramsey 82 Mr D Cross Colby 83 Rev. G Brefitt Peel 84 Mrs S Brefitt Peel 85 Mr and Mrs Corkill Douglas 86 Ms E Harper Castletown 87 Ms R Salt Colby 88 Mrs C Edgecox Tromode 89 Ven B Partington Representin Douglas g a number of church leaders on the IOM 90 Mr and Mrs Lardner Castletown 91 Mrs C Harrison Colby 92 Dr F Mcall Hants, UK 93 Mr J Moore Braddan 94 Mrs S J Lalor-Smith Foxdale 95 Miss G Konrath Port St Mary 96 Mrs A Warner-Fox Onchan 97 Miss S Fryer Douglas 98 Miss Y Atkinson Onchan 99 Anonymous - 100 Mrs B Kinley Peel 101 Mrs J Maddrell Port St Mary 102 Mr R Smith CARE London, UK 103 Mr B L Keig Ballasalla 104 Ms M Garland IOM Douglas Freethinkers 105 Mr and Mrs Holden Port Erin 106 Mrs } Pearn Ballaugh 107 Ms K Smith Ballasalla 108 Mr L Hope Wiltshire, UK Reference Name Organisation Address N um ber 109 P Mundy Ballabeg 110 Dr C Cooper Hastings, UK 111 Rev. K Jackson Douglas 112 Mr J Lalor-Smith Foxdale 113 Mrs D Wright Douglas 114 Mrs K Prior Colby 115 Mrs G Fappiano Castletown 116 Prof. A G Johnson Sheffield, UK 117 Ms C Milner Colby 118 Rev K Corkish Port Erin 119 J Kaighin Kirk Micheál 120 Prof. T S Maughan Cardiff, UK 121 Mrs M Salt Union Mills 122 Capt. S Wright Salvation IOM Army, IOM 123 Mr and Mrs Vandy Ramsey 124 Rev. E Malcolm Powys 125 Mrs D Kelly Peel 126 Mr J Kelly Peel 127 Rev. S Caddy Castletown 128 Mr D Drower Ballaugh 129 Mr R Sharp IOM 130 Mr A Lansdown Douglas 131 Ms M McGowan Lezayre 132 Mrs V Myson Port St Mary 133 Dr J Lester Hampshire, UK 134 Rev. C J Griffiths Ramsey 135 Mrs M King Port Erin 136 P R Lewin Douglas 137 Mr G Easton | Port Erin 138 Rev and Mrs Britton Douglas 139 Mr P Richardson Peel 140 Mr Paul Richardson Peel 141 Mrs S D Dunajewski Colby 142 Miss E Stringer Peel 143 Mr J Grimson Ramsey 144 Ms H De Backer Ballabeg 145 Mr and Mrs Byrne Cregneash 146 Miss E J Payne Colby 147 W Quigley Ramsey 148 Mr RTomilson Ramsey 149 Dr C Berry Kent, UK 150 Ms J Giszter Douglas 151 Mr R Jeavons St Johns Reference Name Organisation Address N um ber 152 Mr D Boultbee Douglas 153 Mr and Mrs Relf Croyden, UK 154 Dr P J Boultbee Colby 155 Mrs E Boultbee Colby 156 Dr J Garland IOM 157 Mrs I Robinson Douglas 158 Mr J Richardson Peel 159 D Davis Surby 160 P O'Brien Birmingham, UK 161 Miss D Duggan Colby 162 Ms T Wilson Port Erin 163 Rev C Belfield Douglas and Onchan Peel Methodist Circuit 164 Easton Family St Marks 165 Rev M Else Grace Peel Baptist Church 166 Mr J Stanfield Port St Mary Port St Mary Baptist Church 167 Ms I Else Peel 168 Mr R D Richardson Peel 169 Dr J Paul London, UK 170 Mrs F Imrie Port Erin 171 Mrs G Blackwell Ramsey 172 Ms D Joyce Ramsey 173 Mr and Mrs Bowskill Port St Mary 174 Miss A Corrin St Johns 175 Mrs S Scott Douglas 176 Ms S Brookbank Kirk Micheál 177 Mr S Else Peel 178 Mr and Mrs Maughold Uhlenbroek 179 Ms F Masheter IOM 180 LIFE IOM LIFE IOM IOM 181 Mrs L Jones Port Erin 182 Mr B Jones Port Erin 183 Mr B Wallis Port St Mary 184 Ms M Christian Douglas 185 Miss Miller Peel 186 Mrs P Gelling Union Mills 187 Ms Arrowsmith Laxey 188 Mr I White way Port Erin 189 Mr P Hedditch Peel 190 Mr A Douglas IOM Reference Name Organisation Address N um ber 191 Mr R McGowan Lezayre 192 Ms S O'Hanlan Foxdale 193 Miss P Ness Maughold 194 r Dr P Bregazzi Ballaugh 195 Mrs S B rear ley Ramsey 196 Mrs M Gilbert Ramsey 197 Mr and Mrs Maher Port Erin 198 Mrs M Fletcher Douglas 199 Ms M Ford D ouglas 200 Mrs M Redgrave Castletown 201 R Graham-Taylor Douglas 202 Dr M Buzza Leeds, UK 203 Mr and Mrs Quayle Patrick 204 Mr G Lacey Derbyhaven 205 Mr and Mrs Darnill Port St Mary 206 Mrs B Moore Ramsey 207 Ms M Molloy Douglas 208 Mrs T Arrowsmith Ramsey 209 Mr and Mrs Gault Look No Douglas Hands 210 Miss E Canipa Douglas 211 Rev B Humphries Maughold 212 Mrs B Humphries Maughold 213 Rev M Peacock IOM Synod IOM of the Methodist Church 214 Miss B Critchlow Nursing and IOM Midwifery Advisory Council 215 Mrs P D unworth Ramsey 216 Mr and Mrs Emmett Ramsey 217 Mr M Kermode Mec Vannin IOM 218 “ i Lord McColl London, UK 219 Mr P Saunders Christian London, UK Medical Fellowship 220 Mr P Farrell Dublin 221 Mrs P Kneen Port Erin 222 K Smitt Castletown 223 C Foster Australia Appendix 6
Recent Developments in the House of Lords: ADTI Bill 2005
It was agreed at the meeting of the HK Select Committee on Voluntary Euthanasia on the 22nd September 2005 that no further evidence with respect to the Report would be accepted from that date. Subsequently to this, on the 10th October 2005, the House of Lords debated a new Assisted Dying for the Terminally 111 (ADTI) Bill proposed by Lord Joffe. Due to the decision having been made not to accept any further evidence, the contents of the debate and the new Bill are not considered in the body of this report. However, due to the significance of, and the emphasis placed on, the Bills proposed by Lord Joffe in this Report, it was considered that the debate of the 10th October 2005 should be acknowledged.
The primary difference between the ADTI Bill 2004 (as referred to in this report) and the recently published ADTI Bill 2005 is that the ADTI Bill 2005 makes provisions only for a physician to prescribe a qualifying patient with medication, or in the case of a patient for whom it is impossible or inappropriate to ingest that medication, to prescribe and provide means of self-administration of the medication. The 2005 Bill therefore only seeks to legalise physician-assisted suicide, whereas the 2004 Bill sought to legalise both physician-assisted suicide and euthanasia (only in cases where the patient was unable to self-administer medication). The 2005 Bill lacks Clause 7(2) of the 2004 whereby a physician with a conscientious objection must refer the patient to a physician with no such objection. Rather, Clause 7(3) of the 2005 Bill states that no person is under any duty to refer a patient to any other person for assistance to die. The patient is free to consult another physician if either the attending or consulting physician has a conscientious objection. In these conditions the physician with the conscientious objection must, on receipt of a request to do so, transfer the patient's medical records to the new physician. Furthermore, the ADTI Bill 2005 differs from the ADTI Bill 2004 in that it does not make provision for persons suffering from a terminal illness to receive pain relief medication. This is in accordance with the recommendations of the HL Select Committee (HL report paragraph 269 (ix)) and proposals of Lord Joffe.
Appendix 7
Comments from IOM Medical Society Survey Ref. Position of Comments No. Member 1 Hospital My objections to this proposal are practical rather than Based ethical or moral 2 Hospital The Hospice should provide appropriate pain relief of the Based GP and the hospital sectors have reached the limits of their ability. I do not believe doctors should be asked to assist killing 3 Community But it would not be easy to say at what point in the illness Based euthanasia would (possibly) be appropriate 4 Community The Hospice service allows 'death with dignity' Based 5 Community Pressure would lead this to be open to abuse and Based extension of what is ''terminal and serious progressive and physical illness" 6 Community I feel it is much better to leave these issues to the doctor's Based judgement along with the wishes of the patient. I think we have all prescribed "adequate" analgesia in the past. I don't think changing legislation would help, rather it would overcomplicate things. 7 Hospital The issue here is more when to do it * at what stage in the Based disease. Also external pressures from relatives, patient feeling a burden to everyone else i.e. wrong reasons. 8 Community However I would prefer to align with palliation rather Based than euthanasia 9 Community Strongly feel that medical profession should attempt to Based provide that best palliative/terminal care, not kill patients 10 Community I feel that the arguments for euthanasia have become Based outdated since the introduction and growth of a superb Hospice movement - especially here in the Isle of Man 11 Community I am concerned that some very ill people may feel under Based some 'obligation' to their relatives and carers to seek euthanasia in a way to ease their responsibilities. I think that there maybe rare cases where this would amount to coercion by uncaring or avaricious relatives. 12 Community I would strongly resist any move to force me into assisting Based anyone to kill themselves. GPs and Hospice services adequately cater for terminally ill patients' needs. 13 Community I would prefer to up and leave the Isle of Man and practice Based elsewhere than to be party to such legislation 14 Retired Good medical and psychological treatment and proper Practitioner TLC can deal with pain and suffering. In those cases who attempt suicide, in my experience, all were glad to be still alive when they had been treated. 15 Retired The will to live is very strong; when it is lost I think the Practitioner person dies very quickly, and often unexpectedly. I believe that people requesting euthanasia want their pain and suffering removed. Ref. Position of Comments No. Member 16 Retired When the abortion law was changed it was protected by Practitioner many safeguards. In practice those have gradually been eroded. The same would happen it euthanasia was legalised. 17 Hospital I would find it morally and ethically wrong to end a Based person's life by active intervention, and would refuse to the extent of ending up in prison. 18 Hospital We have facilities to ensure death with dignity in the Based community, hospital and hospice. However, we need more nursing home beds. 19 Community Instead of wasting time, effort and resources on this Based issue, we need to consider greater investment in palliative care. I feel that if good quality palliative care and carer support is provided, it would eliminate the need for euthanasia. Legislation of euthanasia in an admission of failure to provide adequate palliative care. Using the same token, why don't we let all patients with acute illness die - it might help to save money! 20 Community At the present time I cannot foresee any circumstances Based when I would be reconciled to assist in terminating life 21 Hospital I can see the value for some patients. I cannot see how Based legislation could deal with the subtleties and sensitivities involved. 22 Community I would need to have an opt-out clause should the law Based be changed 23 Retired During almost 40 years of hospital practice I have never Practitioner been asked to provide euthanasia 24 Retired No matter how carefully constructed or worded, any Practitioner legislation introduced and enacted will be open to abuse. The 1967 Termination of Pregnancy Act was thought to be watertight but has resulted in the most liberal interpretation possible - resulting virtually in termination on demand. That the possible euthanasia legislation should be similarly interpreted would be disastrous. 25 Retired My husband and I wrote to the Manx Government when Practitioner the question of voluntary euthanasia was first mooted expressing our strong objection to the proposed legislation for legalisation of euthanasia 26 Community This is the thin end of the wedge and all with chronic Based illness, mental or physical disability would feel under threat 27 Community This is outside all ethical and moral beliefs that are Based central to my practice of medicine. I would not be prepared to take part in euthanasia or physician-assisted suicide in any way whatsoever. Ref. Position of Comments No. Member 28 Community This is a social and political issue, not a medical one. Based Those who seek to medicalise it do so in an attempt to sanitise it. 29 Community I feel that the pro-euthanasia lobby prey on the fears of Based vulnerable people who have a devastating diagnosis and are facing an unknown future. The implication is that they may have a painful and undignified death. The reality that I have witnessed and been part of is that their symptoms can be alleviated, their fears addressed and they can then spend precious quality time at the end of their lives with their loved ones. Their deaths are dignified already. 30 Community Euthanasia diminishes the whole community. Legalising Based it, far from empowering the terminally ill, threatens them and judges their lives 'not worth living'. 31 Retired After nearly 70 years of total interest, experience and Practitioner practice of medicine I am certain that I totally agree with the BMA views. 32 Retired A change in the law would be unnecessary and Practitioner dangerous 33 Retired I have never been asked by a patient to assist their Practitioner suicide. I have been asked several times by relatives to accelerate death of patients whom they considered to be beyond help. 34 Retired The trouble is that many people have an interest in the Practitioner demise of old and difficult patients (including the state). In practice legislation of this kind would open the way to large scale elimination of inconvenient human beings - as is happening in Holland and as the abortion act has made possible with the unborn. As one of the sponsors of the Bill said "Many elderly people are unproductive and a burden on the resources of society". 35 Hospital My personal view is that euthanasia should be allowed Based under strict guidelines 36. Retired The patient should ultimately determine life/death Practitioner issues - we serve the patients 37 Community Individuals must decide and act for themselves given Based their own knowledge of their own problem. It is an individual's access to means that is a problem. 38 Retired After 65 years I have seen so many patients plead to be Practitioner helped to end the misery. [I] would act by the will of the majority. 39 Retired Physician-assisted suicide is a matter for the individual Practitioner physician to decide at the time. Voluntary euthanasia should be made legal. Everyone has the right to die at the time of their own choosing. I am long since retired from active practice. I can only pray if this happened to me, it would have then become legalised. Ref. Position of Comments No. Member 40 Retired I would support the latter (physician-assisted suicide) Practitioner after there had been full discussion and counselling and two medical opinions. I strongly believe in the dignity of death. 41 Retired The BMA have little concept of what happens at the Practitioner cutting edge of medicine. They have repeatedly in the last 4 decades ignored the wishes and needs of hospital doctors and GPs to a very large extent. Most senior representatives and council members do not practice enough medicine to know the realities of the job. They are too busy attending meetings in London (with expenses) and looking for their knighthoods or even peerages!! 42 Community Over 75% people would choose to die in their own Based home. They have control within their familiar surroundings and family and friends. But over 75% actually die in an institution with strangers around them. Strangers who officiously strive to keep alive. We are trained to use treatments that are available and reluctant to write DNR on notes as although appropriate, often some member of wider staff or family relative is uncomfortable with it. 43 Retired I am concerned that too hard a line will lead to Practitioner unwillingness by colleagues to use adequate levels of analgesic drugs for fear of being 'shopped7 by other members of the healthcare team - No deliberate ending of life must not mean uncontrolled prolongation of suffering! A A T 1 Retired I am concerned by the lack of consent by patients to Practitioner analgesia and other medication given in terminal care which may shorten life 45 Community If it was legal I would not deny patients the choice but Based would strongly discourage them and educate them on other choices 46 Retired I think all of us are able to recognise an illness which Practitioner will result in death fairly shortly 47 Community I am sure I have hastened the dying by increasing the Based dose of narcotics to the point where they produced a state of semi-consciousness. There is a grey area at present where increasing the dose of a narcotic may mean the patient dies earlier than if the dose was not increased. I am sure many health professionals know this but do not regard it as euthanasia but it may be challenged legally at present. 48 Community Isle of Man could use a more integrated approach to Based control of pain. It could be difficult but certain conditions e.g. MND spring to mind as being reasonably clear cut 49 Community Should not be only a doctor on the assessment panel Based Ref. Position of Comments No. M em ber 50 Retired We delude ourselves as medics if we suggest that, Practitioner already, we do not get ourselves involved in life/death decisions. I believe our present stance is associated with out views of death which are shaped by individual /religious stances. Let the people decide. Do we believe we are a secular society? If so lets act like one! BMA actually represents á minority [view] of doctors. 51 Community Very difficult issue!! Widely different views in society - Based religious, cultural, moral, ethical. However would my view be different to the above if I, or a close relative/friend, had a a terminal illness with intractable pain? Difficult! 52 Hospital Those who have requested euthanasia have tended to be Based patients suffering from severe treatable depression 53 Community An individual may have acted for themselves. Doctors Based are open to legal action by relatives or nursing staff who may have appeared to be in agreement at the time and subsequently felt otherwise - blaming others for their own inadequacies. 54 Community The big problem is the time it takes to explain and allow Based an individul to absorb the information given. "It can't be happening to me" is often an initial reaction to bad news. Some people are exceptionally well informed. 55 Community DIY. Allow individual access to appropriate medication Based with sufficient knowledge of' the limitations of that medication. 56 Retired It is lawful to administer treatment with the object of Practitioner relieving suffering - even if it accelerates death. In my opinion it is salutary that practitioners so acting should still have to be prepared to defend their actions in court.
Appendix 8
Copy of Standard Letter of Receipt
SECRETARY OF THE HOUSE OF KEYS Legislative Buildings Scrodeyr y Chiare as Feed Douglas Isle of Man COUNSEL TO THE SPEAKER British Isles IMI 3FW Fer-Coyrlee da'n Loayreyder
Malachy Cornwell-Kelly
Our Ref: C/VE/tl 26th September 2003
Mr and Mrs Vandy West Aust Lezayre Isle of Man
Dear Mr and Mrs Vandy
Select Committee of the House of Keys on Voluntary Euthanasia Thank you for your letter of 25th September 2003. This will be placed before the Committee at their next meeting.
Yours sincerely
Malachy Comwell-Kelly
Appendix 9
Copy of Postcard from Manx 4 Death with Dignity Campaign
“It’s a Human Right” I have recently been diagnosed with prostate cancer with secondaries. Thanks to good medical care I am at the moment in good health and enjoying life. 1 would like to think if I reached the stage of terminal illness where through pain or deteriorating quality of life, 1 had had enough, I should have the right to say a proper goodbye to family and friends and die in a dignified way. Other terminally ill residents are in the same position and we should be allowed to receive medical assistance to die at a time of our choosing. Strong safeguards must accompany any change in the law. The House of Keys has voted to set up a committee to investigate legalising doctor assisted dying. Please support the campaign for a change in the law by signing and returning the petition below. Thank you. Patrick Knccn. Ififtfe the undersigned bdieve the bwfcrifvs lite/pf tibn■ tbouW;be ehuigod (iutyettto rpftdkal ftndlegri safeguards] to legalise deaor assisted dying for m eirt^ cixrpctant. termihaiy ifi:adiita!vw tsjwe tmdie>e0«it^ 'i«jtiesa to (fie.
□ PlwM'dcfc hare you do not wbh to Fir« Na/rWs: Surname/s:. tf.tfpdt&d «n th* csmpajpiV progroi* Address:______C QmiuiaCiiA.! More information visit www.Manx4DWD.org.uk Parliamentary Copyright available from:
The Tynwald Library Legislative Buildings DOUGLAS Isle of Man IMI 3PW British Isles Tel: 01624 685520 Fax: 01624 685522 e-mail [email protected] January 2006 Classic DFS.- 5 «fl for gi-5ö sheets 44ö «ww. binderst ic.coH