Select Committee of the House of Keys on Voluntary Euthanasia
PP12/06
SELECT COMMITTEE OF THE HOUSE OF KEYS ON VOLUNTARY EUTHANASIA
SELECT COMMITTEE OF THE HOUSE OF KEYS ON VOLUNTARY EUTHANASIA
At a sitting of the House of Keys on 13th May 2003 it was resolved that leave be given 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 help to die at his own considered and persistent request; and to make provision for a person suffering from such a condition to receive pain relief medication; and for connected purposes.
Amendment moved - that after the words “for connected purposes” the following be added -
“and that a select committee of five members be appointed with power to take written and oral evidence pursuant to sections 3 and 4 of the Tynwald Proceedings Act 1876 on the subject matter of the proposed Bill and to report to the House before its introduction.”
Amendment carried.
House divided. Motion as amended carried.
Mr Anderson, Mr Corkill, Mr Downie, Mr Gill, Mrs Hannan, Mr Houghton, Mr Quayle and Mr Rimington were nominated.
After a ballot Mr Anderson, Mr Downie, Mr Gill, Mrs Hannan and Mr Rimington were elected.
Mr Q B Gill MHK (Rushen) Chairman
Hon D M Anderson MHK (Glenfaba)
Hon A F Downie (until 19th April 2005)
Mrs H Hannan MHK (Peel)
Hon J Rimington MHK (Rushen)
The powers, privileges and immunities relating to the work of a committee of the House of Keys are those conferred by sections 3 and 4 of the Tynwald Proceedings Act 1876, sections 1 to 4 of the Privileges of Tynwald (Publications) Act 1973 and sections 2 to 4 of the Tynwald Proceedings Act 1984.
Copies of this Report may be obtained from the Tynwald Library, Legislative Buildings, Bucks Road, Douglas IM1 3PW (Tel 01624 685516, Fax 01624 685522) or may be consulted at www.tynwald.org.im
All correspondence with regard to this Report should be addressed to the Clerk of Tynwald, Legislative Buildings, Bucks Road, Douglas IM1 3PW.
Select Committee of the House of Keys on Voluntary Euthanasia Covering Paragraphs of the Committee’s Report Your Committee have, as will be seen below, received a very considerable amount of evidence, much of it of a technical medical kind, or relating to difficult and controversial matter of ethics. In the circumstances, we have felt that we could not do justice to this substantial body of material without the assistance of a suitably qualified researcher. Miss J Helps was accordingly invited to read, assess and report on everything which has been put to the Committee.
This task was carried out over the summer Recess 2005 and it has been received and studied by your Committee since. The Report which follows has thus been prepared on behalf of the Committee by Miss J F Helps, and minor clarifications only have been made to it at the Committee’s request. Miss Helps has indicated that she accepts that these minor clarifications have in no way undermined the impartiality and academic integrity of her Report.
Your Committee record their appreciation of Miss Helps’s work, which they believe presents the House with a thoroughly professional and balanced assessment of the arguments and evidence in this area. Miss Helps’s CV is at Appendix 1 to the Report.
Table of Contents
1. Introduction ...... 2 2. Current Situation in the UK & Crown Dependencies...... 5 3. Jurisdictions with Legalised Assisted Dying ...... 10 4. The Legal Situation Elsewhere Around the World ...... 33 5. The Ethical Arguments ...... 36 6. Practical Issues...... 41 7. Opinions of the Health Care Sector ...... 56 8. Public Opinions ...... 65 9. Hospice & Palliative Care...... 79 10. Issues to Consider in Proposed Legislation ...... 85 11. Pain Relief & Double Effect Medication ...... 99 12. Closing Statement...... 103 13. References ...... 104
1 1. Introduction 1.1 The Proposed Bill At the sitting of the House of Keys (HK) on Tuesday 13th May 2003 Members of the House of Keys (MHK) voted fifteen to seven in favour of Mr J Rimington MHK being given leave 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 help to die at his own considered and persistent request; and to make provision for a person suffering from such a condition to receive pain relief medication; and for connected purposes.”
The leave to introduce the Bill was qualified by the requirement that a Select Committee of five members be appointed with the power to take written and oral evidence pursuant to sections 3 and 4 of the Tynwald Proceedings Act 1876 on the subject matter of the proposed Bill and to report to the House before its introduction. After a ballot Mr D M Anderson MHK, Hon A F Downie MHK, Mr Q Gill MHK, Mrs H Hannan MHK and Hon J Rimington MHK were elected, and at the first meeting Mr Gill was elected as chairman. Hon A F Downie MLC was an original member of the committee but ceased to be a member when he was elected to the Legislative Council on 19th April 2005; he was not replaced. It should be noted that the Mover (Mr J Rimington MHK) and the Seconder (Mr Q Gill MHK) of a Bill are not automatically elected to any committee appointed to investigate it (HK Select Committee meeting 26/01/04). The Select Committee took the title Select Committee on Voluntary Euthanasia. The use of the term ‘Voluntary Euthanasia’ was decided upon as a working title for the Committee, both for ease of reference and the fact that it is a term that is widely understood. It should be considered however that the remit of the Committee is the long title of the proposed Bill as quoted above.
1.1.1 Mr P Kneen The Bill was proposed following a campaign by Mr Patrick Kneen. Mr Kneen was a Port Erin resident who was suffering from prostate cancer. Both he and his wife were members of the Voluntary Euthanasia Society (VES, please note that a list of all abbreviations used throughout this report can be found at Appendix 2) and campaigned for the legalisation of euthanasia in the Isle of Man (IOM). Mr Kneen, speaking on ‘Right to Die’ a Border TV production, said, “Surely people who feel this way should have the freedom to follow their beliefs and to be able to choose” (Border TV, broadcast 08/01/2004). 1.2 Definitions & Terminology 1.2.1 It is important to define the language of the debate if the debate is to inform meaningfully. Many definitions have been formulated for euthanasia and assisted suicide; therefore the meaning of terms used must be made clear in every case. The literal meaning of euthanasia is a good death as the word is derived from the Greek words ‘ef’ meaning good and ‘thanatos’ meaning death (Mystakidou, 2003). However, the term ‘euthanasia’ is now taken to mean a deliberate intervention whose primary intention is to end another’s
2 life; this is the definition adopted by the British Medical Association (BMA). The term voluntary euthanasia is commonly understood to mean “a doctor intentionally killing a person by the administration of drugs at that person’s voluntary and competent request”.
1.2.2 There are many prefixes added to the term euthanasia, such as voluntary, involuntary, nonvoluntary, active and passive. The distinction between ‘active’ and ‘passive’ euthanasia is inappropriate as euthanasia is by definition active. Furthermore the prefixes of voluntary, involuntary and nonvoluntary can be complicate matters unnecessarily. In this report the term ‘euthanasia’ will be used to mean the intentional killing of a person by the administration of drugs at that person’s voluntary and competent request. The prefix ‘voluntary’ will not be used as the killing of a person without their consent (involuntary or nonvoluntary) is not euthanasia it is murder. “Hence, euthanasia can be voluntary only. Accordingly the frequently used expression ‘voluntary euthanasia’ should be abandoned since it is by logical implication, and incorrectly, suggests that there are forms of euthanasia that are not voluntary” (Materstvedt et al. 2003).
1.2.3 Physician-assisted suicide is defined as a doctor intentionally helping a person to commit suicide by providing drugs for self-administration, at that person’s voluntary and competent request. Assisted suicide is defined as a doctor or another person intentionally helping a person to commit suicide at that person’s voluntary and competent request.
1.2.4 Prof. Baroness Finlay of Llandaff considered euthanasia and physician- assisted suicide to not merit distinction, “Should we be talking of euthanasia and physician-assisted suicide as two separate entities, or should we be talking of physician-assisted death only? In other words, is there any real difference in ethical terms or in intent if the patient takes the lethal dose of medicine by mouth or proffers a vein for it to be injected intravenously? I think not.” In this report that term assisted dying is used to encompass euthanasia, physician-assisted suicide, and assisted suicide as the terms are defined above. 1.3 Current Legal Situation
1.3.1 Suicide & Assisted Suicide Suicide was an offence in the IOM under the Criminal Code 1872, but was repealed by the Criminal Law Act 1981. Therefore, since 1981 suicide has not been a criminal offence in the IOM. However, the Criminal Law Act 1981 stipulates that a person who aids, abets, counsels or procures the suicide of another, or a attempt by another to commit suicide, shall be guilty of an offence. Such an offence is punishable by imprisonment for a term not exceeding fourteen years.
1.3.2 Euthanasia Regardless of the circumstances, the deliberate taking of the life of another person constitutes the crime of murder in the IOM.
3 1.4 Approach & Methodology 1.4.1 The Clerk of Tynwald has advised that the Select Committee on Voluntary Euthanasia met on 14 occasions. On these occasions they considered, inter alia, the oral evidence, written public evidence, comparable reports and pertinent research and papers.
1.4.2 Evidence was assembled through the hearing of oral evidence in four public sittings between 5th May 2004 and 17th September 2004. Transcripts of this evidence are available for reference at Appendix 3. Individuals representing a wide range of organisations or views were heard from, such as a pro-life organisation, pro-euthanasia organisation, experts in medical, ethical, religious, and legal matters, and a member of the public. The individuals from whom oral evidence was heard, their associations and the page number of their transcript in Appendix 3 are detailed below.
5th May 2004 Miss B Critchlow, Director of Nursing Midwifery Pages 3 to 11 and Professional Development, Noble’s Hospital Dr J Garland, Clinical Psychologist, Oxfordshire Pages 11 to 23 Mental Healthcare Trust Mr P Cusworth, Research Officer, Life UK Pages 23 to 36 Mr P G Bryden, Sulby Pages 36 to 43
21st May 2004 Prof. J Harris, Institute of Medicine, Law and Bioethics, Pages 47 to 55 Manchester University Ven. B Partington OBE, Archdeacon, on behalf of Pages 55 to 62 the Churches Ms D Annetts, Voluntary Euthanasia Society Pages 62 to 71 Dr B Harris, Isle of Man Medical Society Pages 71 to 81 Mr M Kermode, Mec Vannin Pages 81 to 88
23rd June 2004 Mr J L M Quinn, St Bridget’s Hospice Pages 91 to 100 Dr R Huxtable, Bristol University, lecturer in Pages 101 to 111 Medical Law and Ethics
17th September 2004 Prof. A Johnson, retired Professor of surgery and teacher Pages 115 to 128 of medical ethics H M Attorney General Pages 128 to 132
1.4.3 In order to assess the opinions of the Manx public and assemble evidence the Select Committee issued a call for written evidence from interested individuals and organisations. The written evidence received was read in full and subjected to a full analysis (Section 8). A copy of the press notice and a full list of public submissions and any associated organisations can be seen at Appendices 4 and 5 respectively.
1.4.4 Furthermore, a considerable body of documentation was considered containing details of the regimes adopted in jurisdictions where assisted dying is permitted. The reports by the House of Lords (HL) Select Committee
4 on the Assisted Dying for the Terminally Ill (ADTI) Bill and the States of Guernsey: BILLET D’ÉTAT – XVI 2004 Voluntary Euthanasia (Death with Dignity) were also considered in evidence.
1.4.5 The Clerk of Tynwald has advised that although there could have been an advantage in the Committee seeing for themselves the situation and experience in overseas jurisdictions where euthanasia is legalised, it was felt that the time and expense involved in doing that would not be commensurate with such additional value as would have been added to the investigation. No overseas visits were therefore undertaken.
1.4.6 The purpose of this report is to present a balanced treatment of the subject rather than to reach specific conclusions. The aim is to provide information to the House and allow further consideration of the proposed Bill from an informed position. 1.5 Structure of the Report The report begins with a consideration of the current situation in the United Kingdom (UK) and crown dependencies regarding euthanasia and assisted suicide, including an outline of the UK ADTI Bill. Section 3 consists of a detailed consideration of jurisdictions which have legalised some form of assisted dying, either at the present time or in the past. This includes an analysis of the requirements of any legislation and the experiences of the jurisdiction of its practice. Section 4 considers the legal situation regarding assisted dying in other countries around the world. The report then considers the ethical issues relevant to the issue of assisted dying, primarily the concepts of autonomy and sanctity of life (Section 5). The practical issues associated with legalising a form of assisted dying are then reviewed in Section 6, these issues are diverse and some have great implications for legislation. Sections 7 and 8 consider evidence regarding the view of medical professionals and the public respectively, both in the IOM and elsewhere. The issue of palliative care and hospices is linked to the issue of assisted dying as they have the shared goal of death without suffering, this is discussed in Section 9. Specific aspects of legislation that has been enacted or proposed elsewhere, and their relevance to the proposed Bill in the IOM are detailed in Section 10. One aspect of the Bill that could be considered separately is the proposed provision for a person suffering from a terminal or a serious and progressive physical illness to receive pain relief medication, alongside this the concept of double effect medication is explained and its implications clarified (Section 11). Finally, Section 12 contains a brief summary of the aims of this report. 2. Current Situation in the UK & Crown Dependencies 2.1 Introduction This section details the different current legal situations in the UK and crown dependencies. The contents of the recently proposed Assisted Dying for the Terminally Ill (ADTI) Bill in the UK are discussed and the subsequent recommendations of the HL Select Committee regarding any future similar legislation are outlined.
5 2.2 England & Wales 2.1.1 The UK Suicide Act (1961) provided that suicide was no longer a crime in England and Wales. However, it is still a statutory crime to aid, abet, counsel or procure a suicide or attempted suicide. This offence carries a penalty of up to fourteen years imprisonment. In the case of assisting suicide, each case is considered on its merits by the Crown Prosecution Service to determine if there is sufficient evidence to support the charge and whether or not prosecution would be in the public interest. The deliberate taking of life of another person, whether that person is dying or not, is murder. There is no specific legislation regulating euthanasia or physician-assisted suicide.
2.2.2 Introduced Bills The two most recently introduced Bills in the UK are Lord Joffe’s Patient (Assisted Dying) (PAD) Bill and Assisted Dying for the Terminally Ill (ADTI) Bill (see Appendix 6 for recent developments in the UK that have occurred after the deadline for no further evidence). Lord Joffe introduced the PAD Bill to Parliament in 2003. This Bill allowed a competent adult who was suffering unbearably as the result of a terminal or serious, incurable and progressive illness to receive medical help to die at his or her own request. The Bill received a second reading but proceeded no further. Lord Joffe then introduced a second Bill, the ADTI Bill, which differed from the PAD Bill in that it was limited to only terminally ill patients and included a requirement for a discussion with applicants of the option of palliative care. The Bill received a second reading and on the 10th March 2004 the House of Lords appointed a Select Committee to examine and report on the ADTI Bill.
2.2.3 ADTI Bill 2.1.3.1 The ADTI Bill is a “Bill to enable a competent adult who is suffering unbearably as a result of a terminal illness to receive medical help to die at his own considered and persistent request; and to make provision for a person suffering a terminal illness to receive pain relief medication.” In this case ‘terminally ill’ is defined as “an illness which is inevitably progressive, the effects of which cannot be reversed by treatment (although treatment may be successful in relieving symptoms temporarily) and which will be likely to result in the patient’s death within a few months at most.” The qualifying conditions and requirements of the Bill are detailed below.
2.2.3.2 Qualifying Conditions The attending physician shall have been informed by the patient that he or she wishes to be assisted to die. The attending physician must be satisfied that the patient is competent (has the capacity to make an informed decision), determine that the illness is terminal, and be satisfied that the patient is suffering unbearably as a result of the terminal illness. According to Clause 1 of the Bill suffering unbearably is “suffering whether by reason of pain or otherwise which the patient finds so severe as to be unacceptable”. The patient must be informed by the attending physician of his medical diagnosis, prognosis, the process of being assisted to die, and of the alternatives; including but not limited to palliative care, care in a hospice, and control of pain. If the patient persists with the request to be assisted to die, the attending physician must be satisfied that the request is made voluntarily and that the patient has made an informed decision. The attending physician must then
6 refer the patient to a consulting physician. The consulting physician must be practicing in the National Health Service (NHS), qualified to make the diagnosis and prognosis, and independent of the attending physician. The consulting physician must be informed by the patient that he or she wishes to be assisted to die, be satisfied that the patient is competent, confirm the diagnosis and prognosis made by the attending physician, be satisfied that the patient is experiencing unbearable suffering as a result of the terminal illness, that the patient is informed of the alternatives, and that the request was voluntary and informed. The consulting physician must then inform the patient that they must make a declaration of the request that can be revoked at any time.
2.2.3.3 Offer of Palliative Care The attending physician shall ensure that a specialist in palliative care who shall be a physician or a nurse has attended the patient to discuss the option of palliative care.
2.2.3.4 Psychiatric Referral If either the attending or the consulting physician is not satisfied that the patient is competent the attending physician will refer the patient for psychiatric opinion.
2.2.3.5 Notification of Next of Kin The attending physician shall recommend to the patient that he or she notify his or her next of kin of the request for assisted dying.
2.2.3.6 Declaration Two individuals, one of whom shall be a solicitor, must witness the declaration. The patient should be personally known to the solicitor or have proved his identity to him. The solicitor must be satisfied that the patient appears to be sound of mind and understands the effect of the declaration. The attending or consulting physician, psychiatrist, member of the medical care team, or relative or partner of the patient, may not witness the declaration. This declaration remains in place, unless revoked, for 6 months. The declaration may be revoked at any time and in any manner. If the declaration is revoked the attending physician will put a note in the patient’s file recording the revocation, remove the declaration from the file and destroy it.
2.2.3.7 Protection & Offences Clause 10 of the ADTI Bill provides that a physician or member of the health care team who, acting in good faith, complies with a patient’s request to die in accordance with the provisions of the Bill shall not be in breach of either the law or any professional oath or affirmation. Clause 11 makes it an offence to falsify, participate in the falsification of, or destroy a relevant document.
2.2.3.8 Documentation Requirements The attending physician shall ensure that all documentation which demonstrates that the qualifying conditions have been met, any oral or written requests by the patient for assistance to end his life, the declaration, and a note from the attending physician stated that he was satisfied that all
7 requirements had been met and detailing the medication prescribed, are assembled. The attending physician must forward a copy of the documentation to the monitoring commission within 7 days of the declaration being carried out.
2.2.3.9 Monitoring Commission The ADTI Bill sets out that the monitoring commission will consist of 3 members; one registered medical practitioner, one legal practitioner and one lay person with first hand knowledge or experience in caring for a person with a terminal illness. If two of the members consider that the qualifying conditions have not been met they shall refer the matter to the district coroner (or in Scotland, to the procurator fiscal) for further investigation.
2.2.3.10 Conscientious Objection Clause 7 of the ADTI Bill provides immunity for anyone with conscientious objection from being obliged to participate with any of the processes detailed by the Bill in any way. If the attending physician or consulting physician has a conscientious objection he shall take the appropriate steps to ensure that the patient is referred without delay to a physician without such a conscientious objection.
2.2.3.11 Insurance No policy of insurance which has been in force for twelve months as at the date of the patient’s death shall be invalidated by any reason of a doctor having assisted a qualifying patient to die in accordance with the Act.
2.2.3.12 Pain Relief Clause 15 of the ADTI Bill provides for a patient suffering from a terminal illness to be entitled to request and receive such medication as may be necessary to keep him or her free, as far as possible, from pain and distress.
2.2.4 HL Select Committee Recommendations Lord Joffe’s ADTI Bill was unable to progress in the session of Parliament it was introduced in and so the HL Select Committee reported on the evidence they received and gave recommendations on how the matter should be handled in the future. The Committee did not make a statement on the acceptability of the Bill itself. Among the recommendations made were that a distinction should be drawn between voluntary euthanasia and assisted suicide in order to provide the opportunity for the House to consider the subjects separately. The Committee also recommended that changes should be made to the requirements of a physician who has a conscientious objection to assisting a patient to die. It was felt that the clause governing pain relief (Clause 15) should not be included. The findings and recommendations of the HL Select Committee will be discussed further in the course of the report. 2.3 Scotland 2.2.1 The UK Suicide Act 1961 covering England and Wales does not apply in Scotland and suicide has never been illegal under Scots law. The criminal law in Scotland is based on case law and there are conflicting views as to whether assisted suicide is a crime since it is not proscribed in any legislation. Under Scots law euthanasia is regarded as the deliberate killing of another and
8 would be dealt with under the criminal law relating to homicide. There might be cases where the circumstances of the offence would make a charge of culpable homicide more appropriate than one of murder, and all of the circumstances of cases of this kind would be taken into account by a court before sentence was pronounced. If the accused were convicted of murder, however, a sentence of life imprisonment would be mandatory. There is no specific legislation regulating euthanasia or physician-assisted suicide.
2.2.2 In 2000 the Scottish Parliament enacted “The Adults with Incapacity (Scotland) Act”. This was aimed at protecting the rights of adults who cannot make decisions for themselves. In terms of its medical provisions, the Act provides a general authority for doctors to carry out procedures which are reasonable under the circumstances in order to safeguard or promote the health of the patient who is incapable of consenting. The proposed authority is subject to a number of safeguards, including a requirement to take into account the person’s wishes where these can be ascertained and consultation with a patient’s family or representatives. During the passage of the Bill the Executive received a number of representations that the legislation would permit passive euthanasia. However, Ministers clarified that the Bill would authorise the person in charge of treatment to do only those things which are reasonable in the circumstances and which would safeguard or promote the physical or mental health of the patient. Any intervention which is reasonable in the circumstances but does not have the effect of safeguarding or promoting the physical or mental health of the patient is not permitted. The withdrawal of food or liquids, however they are administered, when that would lead to death, would not be safeguarding health and is therefore not permitted under the Act. 2.4 Northern Ireland The Criminal Law (Suicide) Act enacted in 1993 in Northern Ireland abolished the offence of suicide. The legal position in Northern Ireland is similar to that of England and Wales. Section 2 of the 1993 Act states that a person who aids, abets, counsels or procures the suicide of another or an attempt by another to commit suicide shall be guilty of an offence and shall be liable of a conviction to imprisonment for a term not exceeding 14 years. There is no specific legislation regulating euthanasia or physician-assisted suicide. 2.5 Guernsey 2.4.1 It is illegal in Guernsey to commit, or to assist someone to commit, suicide. The act of euthanasia or assisted suicide would be classed as homicide. There is no specific legislation regulating euthanasia or physician- assisted suicide.
2.4.2 On the 28th June 2002 a requête (petition), entitled Death with Dignity (DWD), was presented to the President and members of the States of Deliberation of Guernsey. The requête stated that in the opinion of the petitioners, many people in Guernsey wished to see a change in the law allowing patients the right to chose to die to be part of their medical treatment. It was requested that appropriate investigations and consultations be carried out and the States of Deliberation be reported to on “the implications of allowing Doctor Assisted Death (DAD) or some other similar Death with Dignity Legislation to be implemented within Guernsey”. The
9 recommendations of the committee in connection with the matter were requested. In September 2002 the requête was voted in favour of at a States meeting. The Advisory and Finance Committee then established the DAD Working Party to carry out the appropriate investigations and consultations and report to the States of Deliberation.
2.4.3 The report of the DAD Working Party considered the social, legal, ethical and medical aspects surrounding euthanasia. It considered the experience of euthanasia worldwide, reviewed the situation in Guernsey in terms of the public’s view, the opinion of the medical profession, and the palliative care provision. The majority view of the Working Party was that there should be no change to the present legal position on any form of euthanasia. The minority report of the Working Party recommended that Guernsey should legislate to facilitate voluntary euthanasia. It was suggested that if the States supported the minority report, then the States’ decision should be the subject of an island-wide referendum. However, the majority of the Policy Council did not support the suggestion of a referendum. The Policy Council by a majority supported the majority view of the Working Party; therefore there was no change to the legal position on euthanasia in Guernsey. 2.6 Jersey The current legal position in Jersey is similar to that in Guernsey in that it is illegal to commit, or to assist someone to commit, suicide under the common law. The acts of euthanasia or assisted suicide would be classed as homicide. There is no specific legislation regulating euthanasia or physician-assisted suicide. 3. Jurisdictions with Legalised Assisted Dying 3.1 Introduction This section examines the details of assisted dying legislation enacted in different jurisdictions. The jurisdictions in which a form of assisted dying is currently legal are Oregon, the Netherlands, Belgium and Switzerland. In addition, the situations in the Australian Northern Territory and Colombia are discussed. Issues considered regarding the enactment and practice of Acts include the conditions under which an assisted dying act is permitted, the monitoring and reporting of practice, conscientious objections of medical professionals, views of the public and medical professionals, reasons for requests for assisted dying, demographics of the users of Acts and the frequency of assisted dying in each jurisdiction. 3.2 Oregon
3.2.1 Legislation & History Oregon was one of the first jurisdictions to legislate for assisted dying. The Oregon Death with Dignity Act (ODDA) resulted from a citizen’s initiative and was voted on by the state electorate in November 1994. This vote found in favour of the Act by a narrow margin of 51% to 49% (Ballot measure 16). The Act was not implemented until October 1997 after three years of court challenges and appeals. An attempted repeal was defeated after a vote of 60% in favour to 40% in opposition (Ballot measure 51).
10 3.2.2 Qualifying Conditions 3.2.2.1 The Act makes provision for a competent, terminally ill resident of Oregon to obtain and use prescriptions from their physicians for lethal medications for self-administration. The ODDA therefore legalises physician- assisted suicide under certain circumstances. In order to make a request for physician-assisted suicide the patient must be 18 years of age or over, a resident of Oregon, capable and diagnosed with a terminal illness. Capable is defined as being able to make and communicate health care decisions. A terminal illness is defined as an incurable and irreversible disease that has been medically confirmed and will, within reasonable medical judgement, produce death within six months.
3.2.2.2 The attending physician must confirm the diagnosis and prognosis of the terminal disease, and determine whether the patient is capable and that the request is voluntary. The patient should be confirmed to be a resident and should be informed of the diagnosis, the prognosis, and the risks of medication to be prescribed and its probable effects. The patient should be informed of the feasible alternatives including but not limited to comfort care, hospice and pain control. The attending physician must then refer the patient to a consulting physician for confirmation of the diagnosis and prognosis. The consulting physician must also be satisfied that the patient is capable and has made a voluntary request. The findings of the consulting physician are to be confirmed in writing. If either physician believes that the patient’s judgement is impaired by a psychiatric or psychological disorder, the patient must be referred for a psychological examination. The attending physician must request that the patient notifies his or her next of kin of the request for assisted suicide. The patient must then be counselled of the importance of having another person present when the medication is taken, and of not being in a public place. The attending physician must inform the patient that they may rescind the request at any time and in any manner.
3.2.3 Request & Declaration The patient must make two oral requests to his or her physician separated by a period of at least 15 days. At the time of the second oral request the attending physician will repeat the opportunity to rescind the request. There must be a period of at least 15 days from the initial oral request to the writing of the prescription. The patient must sign and date a written request, witnessed by at least two individuals who attest in the presence of patient that he or she is capable, acting voluntarily, and has not been coerced to sign the declaration. One of the witnesses must not be a relative of the patient by blood, marriage or adoption, entitled to any portion of estate of the qualified patient, owner operator or employee of the health care facility where patient is receiving treatment or is resident, or the attending physician. There must then be a period of at least 48 hours between the attending physician receiving the written request and writing the prescription for lethal medication.
11 3.2.4 Residency The ODDA is restricted to Oregon residents. As evidence of residency the attending physician may accept, inter alia, an Oregon driver’s licence, registration to vote in Oregon, the filing of an Oregon tax return for the most recent tax year, or evidence that the person owns or leases property in Oregon.
3.2.5 Insurance or Annuity Policies The Act states that the sale, procurement or issuance of any life, health or accident insurance or annuity policy or the rate charged for any policy shall not be conditioned upon or affected by the making or rescinding of a request. Those who use the ODDA are not considered as having committed suicide therefore there are not the same ramifications for insurance reimbursement. No autopsies are required as death under the ODDA is considered “predicted”.
3.2.6 Conscientious Objection The Act provides that “no health care provider shall be under any duty, whether by contract, by statute or any other legal requirement to participate in the provision to a qualified patient of medication to end his or her life in a humane dignified manner”. If a health care provider is unable or unwilling to carry out a patient’s request, and the patient transfers his or her care to a new health care provider, the prior health care provider shall transfer, upon request, a copy of the patient’s relevant medical records to the new health care provider.
3.2.7 Liabilities It is specified in the Act that if a person were to alter or forge a request for medication, conceal or destroy a rescission, or coerce or unduly influence a patient making a request, they will be guilty of a Class A felony.
3.2.8 Control of Prescriptions Once the attending physician has written the prescription and the pharmacist has issued the lethal medication, control of the medication is lost. Not all patients ingest the medication when it is issued to them, but may keep it as a form of insurance if things should get worse. As the majority of patients who take advantage of the ODDA are in hospice care, it is assumed that the hospice will take care of unused medication, however no guidelines have been issued regarding the treatment of unused medication.
3.2.9 Reporting & Monitoring When a prescription for lethal medication is written the attending physician must submit all information pertaining to the compliance with the law to the Department of Human Services (DHS). Physicians can use the reporting form ‘request for medication to end life, attending physicians report and medical records documentation’ provided by the DHS or make all the records, including the attending and consulting physician’s reports and a copy of the counselling referral report if performed, available to the DHS. In this sense, monitoring does not begin until the patient has been issued with a lethal prescription. The DHS then reviews all physician reports and contacts physicians regarding missing or discrepant data. The Vital Records of the
12 DHS are searched periodically for death certificates that correspond with physician reports. The association between death certificates and physician reports allows confirmation of death and in addition records of demographic data can be made. Telephone surveys of attending physicians have been conducted to collect data that are not included on the physician report or death certificate, such as insurance status, enrolment in hospice and the reasons given for the request for medication. Since 2004 physicians have had the option of printing the questionnaire used in the telephone interview from the DHS website, completing it at their convenience and returning it to the DHS. The DHS is responsible for recording the uptake of the law, checking that the basic requirements of the law are being observed, reporting any discrepancies to the Board of Medical Examiners (the regulatory body to the Oregon medical profession, BME), and producing an annual report on number of lethal prescriptions issued and the number ingested. The BME investigates any irregularities reported to them and decides whether, and if so what, action should be taken (Oregon DHS 7th Annual Report).
3.2.10 Public View The fact that the Act resulted from a Citizens’ Initiative, meaning that it was proposed by individuals rather than by the state legislature, suggests that it was an issue important to the public of Oregon. Furthermore, the state electorate then voted on the issue twice, once in 1994 and again in 1997. The first vote in 1994 was in favour of the legislation by a narrow majority, however, the second vote in 1997 indicated increased support for the Act. A spokesperson for the Oregon DHS, Dr K. Hedberg, stated that “It [physician- assisted suicide] is not controversial in Oregon, both because lots of people are not participating and because there have not been any really egregious events” (HL oral evidence Q619).
3.2.11 Physicians’ Views The attitudes of Oregon physicians that are eligible to prescribe under the ODDA were investigated by Ganzini and colleagues (2001) by means of a self- administered questionnaire. The questionnaire was sent to 3981 eligible physicians and 2641 returned the questionnaire, corresponding to a response rate of 66%. The questionnaire examined physicians’ attitudes towards a number of issues including the morality of writing lethal prescriptions and opinions on the ODDA or physician-assisted suicide. It was found that 30% of physicians agreed with the statement “writing a lethal prescription is immoral or unethical”, 59% disagreed with the statement and 11% neither agreed nor disagreed. In terms of support for the ODDA or physician-assisted suicide, 51% either supported or strongly supported the Act and 31% either opposed or strongly opposed it, a further 17% neither agreed nor disagreed with the concept of physician-assisted suicide. The majority (80%) of physicians had not changed their views on the ODDA since it was first voted on in 1994. With regard to the physicians who had changed their views, more physicians had become more supportive (13%) than those who have become more opposed (7%). Despite the fact that approximately half the physicians surveyed were in support of the ODDA, only 34% said that they would be willing to prescribe a lethal medication consistent with the Act, and 20% were uncertain if they would be willing or not. This study illustrates the fact that there is by no
13 means a unanimous view amongst the physicians of Oregon. It appears that around half the physicians support the Act, with the remaining physicians either opposing the Act or neither agreeing or disagreeing with the Act.
3.2.12 Palliative Care in Oregon 3.2.12.1 Palliative care in Oregon is provided for the terminally ill by programmes rather than in care homes, therefore most patients receive care in their own homes. The patients receiving palliative care can call on visiting hospice nurses at any time, and if 24-hour care is required the patient will be admitted to an in-patient unit. The care provided is known as ‘comfort care’, and patients admitted to a programme sign a POLST form (Physician Order for Life-Sustaining Treatment) to state that they want to receive comfort care only. Hospice care in Oregon has undergone significant growth in the last 10 to 15 years. Alongside the introduction of the ODDA was an increase in funding for development of palliative care in Oregon. Ann Jackson, the Executive Director of Oregon Hospice Association, told the HL Select Committee that in 1988 2,000 people used hospice in Oregon and by 2003 15,000 terminally ill people were enrolled on a hospice programme (HL oral evidence Q807).
3.2.12.2 Dr J Garland, a Clinical Psychologist with the Oxfordshire Mental Healthcare Trust, told the HK Select Committee, “Palliative care in Oregon is of a very high standard. In Oregon in 2003, 93% of patients who died from physician-assisted suicide were in hospice care, or ‘comfort care’, as it is known in Oregon. Everything is done to ensure the patient does not need to choose physician-assisted suicide. For example it is important to point out that physicians initially respond to requests for assisted dying with palliative interventions rather than lethal prescriptions” (HK oral evidence). The percentage of patients receiving physician-assisted suicide under the ODDA who were in hospice care was also quoted by Ms D Annetts, representing the Voluntary Euthanasia Society (VES) who also said of the situation in Oregon that “what you see is a coming together of hospice provision and also including in that the possibility of medical help to die as one of the many options made available to patients” (HK oral evidence).
3.2.13 Reasons for Requests for Physician-Assisted Suicide Dr J Garland stated that “Research in Oregon shows that the reasons people ask for and receive physician-assisted suicide are many. Most often they involve issues of autonomy and dignity. Physical symptoms such as pain and fatigue tend not to be the reasons people cite in making a request, although anticipation of worsening symptoms may influence a request” (HK oral evidence). The survey of physicians eligible to prescribe lethal medication in Oregon quoted in section 3.2.11 also revealed reasons why patients make requests for physician-assisted suicide. It was found that in 41% of cases the request was associated with an acute deterioration in the patient’s medical condition. According to the physicians surveyed 20% of patients who made requests had symptoms of depression (none of which received a prescription) and 93% were competent. Physical symptoms that were stated as reasons for requests, whether they were experienced at the time of request or whether the patient anticipated them, were pain, fatigue, and dyspnoea. Existential reasons for requests were loss of independence (57% of requests), a poor quality of life (55%), a readiness to die (54%) and a desire to control the
14 circumstances of death (53%). The fear of being a financial burden (11%) or a lack of social support (6%) were uncommon basis for a request for physician- assisted suicide (Ganzini et al. 2000). This final point was also observed by Dr J Garland who told the HK Select Committee that “The patients [who seek physician-assisted suicide in Oregon] are of above average socio-economic status and are not motivated by poor social support or financial concerns”. Dr J Garland went on to describe those that are “most active in a pursuit of assisted dying” as tending to be “focused, determined, strong-willed and stubborn individuals who are single-minded and uncompromising in their approach. They particularly value remaining in control and avoiding dependence on others, they see little value or meaning in proceeding through a drawn-out dying process, and are extremely sensitive to physicians who appear to discount them by mistakenly labelling them as ‘depressed’…some are described by physicians as loners by choice, whose views do not mesh with the philosophy of hospice care. They appear more willing to consider palliative or hospice care if assured that assisted suicide remains an option in case of need” (Dr J Garland referred to the studies of Ganzini & Dobscha 2003 and Ganzini et al. 2003).
3.2.14 Characteristics of Users of the ODDA The characteristics of those who received and ingested a lethal prescription under the ODDA were analysed by the Oregon DHS in their 7th Annual Report. In terms of the age of those who used physician-assisted suicide, the median age from 1997 to 2003 was 70 and this went down to 64 in 2004. Terminally ill younger people were found to be more likely than older terminally ill people to take advantage of physician-assisted suicide. Males and females were equally likely to use the Act. The marital status of those who used physician-assisted suicide tended to be divorced or never married, this group of people were two times more likely to use physician-assisted suicide than those that were married or widowed. A higher level of education was correlated with a higher probability of use of physician-assisted suicide, especially in 2004 where 51% of those who used the Act had a baccalaureate degree, whereas this figure was 40% in other years combined (Oregon DHS 7th annual report, 2005)
3.2.15 Frequency of Physician-Assisted Suicide A survey of 2649 Oregon physicians (with a response rate of 65%) revealed the outcome of 165 patients who requested physician-assisted suicide under the ODDA. A total of 18% (30) of requests were granted and a prescription received and only 59% (17) of those who received a prescription used it (Ganzini et al. 2000). If these figures can be extrapolated to all requests for physician-assisted suicide in Oregon, this would mean that one in six requests for physician-assisted suicide result in a prescription being written and one in ten requests result in death by physician-assisted suicide. The number of prescriptions written and the number of physician-assisted suicides have increased over the years that physician-assisted suicide has been legal up until 2004, when eight fewer lethal prescriptions were written and five fewer patients ingested lethal medication than in 2003. The number of prescriptions written has increased more rapidly than the number of deaths by physician- assisted suicide, as can be seen in Table 1 and Figure 1.
15 Year Prescriptions Death by PAS. written 1998 24 16 1999 33 27 2000 39 27 2001 44 21 2002 58 38 2003 67 42 2004 60 35 Table 1 Number of prescriptions written and deaths by physician-assisted suicide in Oregon between 1998-2004 70
60
50
r 40 e Prescriptions b
m written u 30 N Deaths from PAS. 20
10
0 1998 1999 2000 2001 2002 2003 2004
Year Figure 1 Number of prescriptions written and number of deaths by physician- assisted suicide by year, Oregon, 1998-2003. Data from Oregon DHS 7th Annual Report. 3.3 The Netherlands
3.3.1 Legislation & History 3.3.1.1 Under Dutch criminal code, prior to the Termination of Life on Request and Assisted suicide (Review Procedures) Act 2001, euthanasia and physician-assisted suicide were crimes under Article 293 and 294.
Article 293: Any person who terminates another person’s life at that person’s express and earnest request shall be liable to a term of imprisonment not exceeding twelve years or a fifth-category fine Article 294: 1. Any person who intentionally incites another to commit suicide shall, if suicide follows, be liable to a term of imprisonment not exceeding three years or a forth-category fine. 2. Any person who intentionally assists another to commit suicide, or provides him with the means to do so shall, if suicide follows, be liable to a term of imprisonment not exceeding three years or a forth-category fine.
16 However, since the early 1970’s the defence of necessity has been accepted against a charge of murder. This defence of necessity refers to the conflict between the necessity to respect life and the necessity to reduce suffering and respect the autonomy of the patient. If it was decided that the person who carried out an act of euthanasia or assisted suicide acted in a way that was “objectively justifiable” then the individual can be found not guilty under Articles 293 or 294. The Courts and the medical profession formulated requirements for accepted practice of euthanasia and assisted suicide; if these requirements were met physicians were unlikely to be prosecuted. These requirements were that, (a) The patient considers his or her suffering to be unbearable and hopeless, (b) The wish for euthanasia or assisted suicide must be well considered and persistent, (c) The request must be voluntary, (d) The attending physician must consult at least one other physician, (e) The attending physician may not ascribe the death to natural causes and is obliged to keep records.
A new procedure for reporting physician-assisted deaths was introduced in 1991 and enacted legally by Dutch legislature in June 1994. This was introduced in order to encourage physicians to disclose cases, promote adherence to the requirements and ensure uniform reporting throughout the country. In these procedures attending physicians were expected to use an official checklist with questions about the patient’s medical history, the request of the patient, the drugs used to cause death, and the report of the consulting physician. The attending physician then had to inform the coroner who conducted a post-mortem examination, collected relevant data, informed the public prosecutor of the death, and submitted all relevant documents. The public prosecutor then examined the record, decided whether to permit burial or cremation, and presented judgement to the Prosecutor General. The Prosecutor General, usually assisted by an advocate general, presented the case, with his or her own opinion to the Assembly of Prosecutors General which had five members. This Assembly then decided whether or not to prosecute; with the final decision made by the Minister of Justice (van der Wal et al. 1996).
3.3.1.2 The Termination of Life on Request and Assisted Suicide (Review procedure) Act 2001 (TLRAS Act), which came into force 1st April 2002, amended Articles 293 and 294 with the paragraph “The act referred to in the first paragraph shall not be an offence if it is committed by a physician who fulfils the due care criteria set out in Article 2 of the TLRAS Act, and if the physician notifies that municipal pathologist of this act”. Ms D Annetts of VES told the HK Select Committee that “It is important to understand that the change in the law in the Netherlands was not actually about patient choice; it was about regulation of medical practice, which is something quite different.”
3.3.2 Requirements of Due Care 3.3.2.1 The requirements of due care set out in Article 2 of the TLRAS Act are that the attending physician must hold the conviction that the request is voluntary and well considered, and that the patient’s suffering is lasting and unbearable. The attending physician must inform the patient about the
17 situation he or she is in and about their prospects. Both the attending physician and the patient must hold the conviction that there are no other reasonable solutions for the situation the patient is in. The attending physician must consult with at least one other independent physician who must give his written opinion on the requirements of due care. Finally, the attending physician must exercise due medical care and attention in terminating the patient’s life or assisting in their suicide.
3.3.2.2 Provisions are made under Article 2 for minors and those who are no longer capable of expressing their will. The attending physician may carry out the request if all other requirements are met for patients aged 16 or over who are no longer capable of expressing their will but prior to reaching this condition were deemed to have a reasonable understanding of their interests and have a written statement containing a request for termination of life. The attending physician may also perform euthanasia or physician-assisted suicide for patients aged 16-18 years with a reasonable understanding of their interests and parents or guardians have been involved in the decision process and patients aged 12-16 years with a reasonable understanding of their interests and with parental or guardian permission.
3.3.3 The SCEN Project It is becoming more common for the consulting physicians role in the due care requirements to be filled by a SCEN (Support Consultation Euthanasia Network) doctor. This Dutch network consists of GPs and other physicians specially trained to assist doctors facing requests for euthanasia (Euthanasia: a guide to the Dutch Termination of Life on Request and Assisted suicide (Review Procedures) Act). The purpose of the SCEN trained physicians is to provide physicians faced with a request for euthanasia with contact with an independent and experienced colleague who will be able to advise the attending physician in the operation of the law and in the medical and emotional problems that can transpire in managing a request for euthanasia. The SCEN physicians can provide the consultation with an independent physician required to fulfil the due care requirements and will encourage uniform and consistent reporting.
3.3.4 Residency There is no specific clause in the TLRAS Act restricting its use to residents of the Netherlands. However is has been stated, “This [the use of the Act by non- residents] is impossible, given the need for a close doctor-patient relationship. The legal procedure for the notification and assessment of each individual case of euthanasia requires the patient to have made a voluntary, well- considered request and to be suffering unbearably without any prospect of improvement. In order to be able to assess whether this is indeed the case, the doctor must know the patient well. This implies the doctor has treated the patient for some time.” (Euthanasia: a guide to the Dutch Termination of Life on Request and Assisted suicide (Review Procedures) Act)
3.3.5 Reporting & Monitoring The physician who ends a patient’s life at his request or assists in a suicide is under an obligation to notify the municipal pathologist of the cause of death, as is the case for any death of unnatural causes. In addition to notifying the municipal pathologist of the cause of death, the physician shall submit to him
18 a report with respect to the observance of the requirements of due care. It is then the responsibility of the municipal pathologist to refer the matter to a regional review committee who will consider the case. The committee will receive the report from the physician, the report from the pathologist, the statement from the independent physician and any written directive of the deceased.
3.3.6 The Regional Review Committees The establishment, composition and appointment of the regional review committees is formalised under the TLRAS Act. There are five regional review committees, each consisting of an uneven number of people; these committees are made up of one legal expert who chairs the committee, one physician and one expert on ethical or philosophical issues. Each committee is appointed for a period of six years and can be reappointed for a further six years after this time; the committee can be dismissed at any instance. The duty of the committees is to assess the basis that the physician has met the requirements of due care. The committees may request supplementary information to the attending physician’s report either orally or in writing, and may make enquires at the municipal pathologist. The attending physician must be informed of the decision of the committee within six weeks of receipt of the report. The committee must reach its opinion by majority vote and when the committee decides that the due care requirements have not been met, they must report this to the Public Prosecution Service. The Public Prosecution Service then has the power to launch a criminal investigation into the incident.
3.3.7 Physicians’ Opinions The opinions of Dutch physicians were investigated in 2001 by an interview and death-certificate study, which was a replicate of those done in 1990 and 1995 (van der Wal et al. 1996 & van der Maas et al. 1996) in order to investigate whether end-of-life practices and attitudes had altered between 1990 and 2001 (Onwuteaka-Philipsen et al. 2003). In 2001 57% of physicians surveyed had performed euthanasia or assisted in suicide. Among family physicians 71% had performed euthanasia or assisted in suicide, 36% of nursing home physicians had and 37% of clinical specialists, therefore family physicians were more frequently involved in euthanasia or physician-assisted suicide in 2001. The opposition to euthanasia or physician-assisted suicide by physicians has decreased over the period of time between 1990 and 2001, this is illustrated by the degree of agreement with the statement that a physician would “never perform it [euthanasia or assisted suicide] nor refer patient”. The percentage of physicians surveyed who agreed with this statement in 1990 was 4%, in 1995 3% and in 2001 1%. Physicians’ attitudes towards autonomy changed only a little between 1990 and 2001. In 1990 and 1995 64% of all physicians surveyed thought that people have the right to decide about their own life and death, in 2001 56% thought that people had the right to make these decisions.
3.3.8 Palliative Care in the Netherlands There are arguments in the literature as to the state of palliative care in the Netherlands. Some argue that the Netherlands was late to develop palliative care due to the policy and practice of euthanasia, however others argue that palliative care practices have been in place since the 1960’s. The argument that
19 the Netherlands was late to develop palliative care services is supported by the fact that the founding specialist hospice/palliative care service was established in 1991 (an in-patient hospice, Johannes Hospice, Vleuten). The view that palliative care has been practiced longer than is formally recognised stems from the belief that in Dutch nursing homes physicians had been developing and disseminating palliative care skills and practice since the 1960’s. In 1972 the Dutch organisation Voorbij de Laatste Stad (Beyond the Last City) was formed to promote the improvement of terminal care in the Netherlands. In 1975 it gave support to the Antonius Ijsselmonde nursing home in Rotterdam, which was seeking to improve the quality of its terminal care provision. The aims were to improve the patients’ transition between hospital and nursing home, improve nursing care in the terminal phase and to provide bereavement support to the patients’ relatives and friends (Clark et al. 2000). At the time of the introduction of the TLRAS Act, there was an accompanying investment in palliative care for the funding of palliative care departments and regional specialist teams. However, the Association for Palliative Medicine (APM) and National Council for Hospice and Specialist Palliative Care Services (NCHSPCS) briefing paper for the UK Patient (Assisted Dying) Bill stated that previously there was no, or almost no, funding for palliative care so it was not a question of increasing existing funding, but introducing funding where none existed. An interview study published in 2002 asked senior policy makers and clinicians whether they agreed that the policy and practice of euthanasia in the Netherlands is the result of undeveloped palliative care. The response was mixed, some believed that the need for better palliative care was not recognised until the late 1990s, some believed that physicians should explore alternative options with patients before allowing euthanasia, and some believed that palliative care is well developed in the Netherlands and that the practice of euthanasia has actually encouraged attention to palliative care.
3.3.9 Reasons for Requests Haverkate and colleagues compared characteristics of refused and granted requests for euthanasia or assisted suicide in the Netherlands (Haverkate et al. 2000). They surveyed a total of 405 Dutch physicians (the response rate for the study was 89%) and asked them to describe their most recent case of a granted request (134 had such a case) and their most recent case of a refused request for euthanasia or assisted suicide (148 had such a case). The most mentioned reasons for requests in both the refused and granted cases were a desire to avoid loss of dignity (56% in granted vs. 42% in refused) and unbearable or hopeless suffering (74% in granted vs. 39% in refused). In the requests that were refused, two factors were mentioned more often than in granted requests, these were weariness of life (40% in refused vs. 18% in granted) and not wanting to be a burden on the family (23% in refused vs. 13% in granted). The reluctance of physicians to grant requests for assisted dying when patients feel as though they are a burden was raised by Ms D. Annetts who told the HK Select Committee “Again, if you look at the Netherlands, I have asked doctors who have helped patients to die about this question of burden, and they have said, ‘If someone says it is because they are a burden, or we have any indication it is because they are a burden, we would not help them’”. Individuals who have their requests for assisted suicide refused were found more often to be female and aged over 80. They were more likely to have depression as a predominant complaint, a remaining life
20 span of over six months, and access to alternatives for treatment. They were less likely to have cancer, to have made a highly explicit request, to be competent, and less likely to be suffering “hopelessly and unbearably”. The reasons given by physicians for refusing requests for assisted dying were either that the individual’s suffering was not unbearable, there were still alternatives for treatment available, the patient was depressed or had psychiatric symptoms, or the request was not well considered.
3.3.10 Users of the TLRAS Act The same study quoted above (section 3.3.7) of the opinions of Dutch physicians between 1990 and 2001 by Onwuteaka-Philipsen and colleagues (2003) determined that euthanasia and physician assisted suicide were relatively uncommon among patients dying at the age of 80 or older and that euthanasia and physician assisted suicide was mainly performed among patients dying of cancer, with 7.4% of all deaths after an end-of-life decision being among cancer patients. It has been seen above that of those who have requests for assisted dying granted in the Netherlands, many express feelings of loss of dignity and unbearable or hopeless suffering.
3.3.11 Frequency of Euthanasia & Physician-Assisted Suicide Onwuteaka-Philipsen and colleagues (2003) found, through their interviews of physicians, that the number of explicit requests for euthanasia or physician- assisted suicide rose from 8,900 in 1990 to 9,700 in 1995 and stabilised at 9,700 until 2001. Through the same interviews it was found that there were 25,100, 34,500, and 34,700 requests for euthanasia or physician-assisted suicide later in a disease (rather than at a particular time) in 1990, 1995 and 2001 respectively. Studies of death certificates by the same research group established that the rate of euthanasia increased from 1.7% of all deaths in 1990 to 2.4% in 1995, and further increased to 2.6% in 2001. However in the physicians’ interviews there was no further increase in 2001. With regard to physician-assisted suicide, according to the death certificate studies, the rate remained constant between 1990 and 2001 at 0.2% of all deaths. These figures are strikingly similar to those published by van der Heide and colleagues (2003) who, using death certificate studies, found the rate of euthanasia to be 2.59% of all deaths and physician-assisted suicide to account for 0.21% of all deaths. It can be seen that the rate of physician-assisted suicide remains low compared to that of euthanasia despite recommendations of leading authorities such as the Royal Dutch Medical Association to choose physician- assisted suicide if possible. This disparity was articulated by Onwuteaka- Philipsen et al. “There is an argument that patients’ autonomy and responsibility in end-of-life decision making are more articulated in assisting with suicide than in providing euthanasia. Such features might, however, be overruled by the physicians’, and probably the patients’, need to control the act and to have medical assistance available in case of unforeseen difficulties. Euthanasia is also frequently preferred over assisted suicide because of physical weakness or incapacity of patients”.
21 3.4 Belgium
3.4.1 Legislation & History 3.4.1.1 In 1998 a similar study to the Dutch death certificate studies was made in Flanders, Belgium. This Belgian study demonstrated that voluntary euthanasia was taking place even though it was against the Penal Code; furthermore, it demonstrated that there was a higher level of non-voluntary euthanasia being effected by Belgian doctors than in the Netherlands. It was found that voluntary euthanasia accounted for 1.1%, physician-assisted suicide for 0.1% and non-voluntary euthanasia for 3.2% of all deaths (Deliens et al. 2000).
3.4.1.2 Subsequently a Private Members Bill to allow euthanasia (defined as “intentionally terminating life by someone other than the person concerned at the latter’s request”) was submitted to the Belgian Parliament and the State Council considered the draft legislation in July 2001. The State Council concentrated on, inter alia, conformation with the European Convention on Human Rights (ECHR). They concluded that ECHR Article 2 in no way implies that the state is obliged to protect life under all circumstances against the wishes of the person involved and that there was a duty to protect the right to life rather than life per se. They also concluded that as long as death took place under conditions that are compatible with human dignity then Article 3 is not infringed. On the 16th May 2002 the Belgian Chamber of Representatives voted 86 to 51 in favour of the Euthanasia Act (Projet de loi relatif à l’euthanasie), the senate having voted 44 to 23 in support in October 2001, and the law came into force on the 23rd September 2002.
3.4.2 Requirements of Due Care 3.4.2.1 The 2002 Euthanasia Act contains well defined conditions of due care. It states that an attending physician who carries out an act of euthanasia does not commit a crime if the patient is an adult or emancipated minor, and if the physician is convinced that the request is voluntary, well considered and repeated and that the patient is capable (sound of mind) and conscious at the time the request is made. The patient must be in a medical situation where there is no solution, and exhibit constant and unbearable physical or psychological suffering which cannot be eased and which results from a serious and incurable accidental or pathological ailment. The attending physician must inform the patient of his health situation and prognosis, the therapeutic possibilities that are available and of the possibilities offered by palliative care and their consequences. The patient and the attending physician must together draw the conclusion that there is no other reasonable solution to the situation. The attending physician must then consult with an independent (with respect to both doctor and patient) physician concerning the incurable nature of the illness and the state of suffering. This consulting physician should provide a written report of his findings and the patient should subsequently be informed of the results of this consultation. If there is a care team in regular contact with the patient, the request of the patient should be discussed with the team or some of its members. If the patient wishes, the patient’s request should be discussed with the designated next of kin. The attending physician should also ensure that the patient has had the occasion to discuss his request with any persons he wishes to.
22 3.4.2.2 If the patient’s death is not imminent the attending physician must make a second consultation with a psychiatrist or a specialist in the illness concerned. This second consulting physician must study the medical records, examine the patient, determine that the patient is of a constant character, is suffering unbearably and unrelievably, and that the request was voluntary, well considered and repeated. This consulting physician must then write a report on his findings and the attending physician must inform the patient of the findings. In the case of non-imminent death there must be period of time of at least a month between the patient’s written declaration and euthanasia. Therefore there is a different procedure for terminally ill patients and patients with incurable illness who may still have many years to live.
3.4.2.3 The patient’s request must be in writing and be written, dated and signed by the patient. If this is not possible the declaration can be written by an adult of the patient’s choice who has no material interest in their death. This person must state the reason the patient cannot write the request, write it in presence of the attending physician and include the physician’s name. The written statement must then be included in the medical records. The patient can withdraw the request at any moment, in which case the document must be removed from the medical files and returned to the patient.
3.4.3 Advance Directives The Euthanasia Act 2002 states that all capable adults or emancipated minors can declare their wishes in writing for cases where they are unconscious or cannot express their will. They can designate one or more trusted adults who will inform the attending physician of the wishes of the patient. The advance directive must be in writing, drawn up in the presence of two witnesses, one of which must have no material interest in the death of the patient, dated and signed by the patient and the witnesses and if necessary by the trusted adults. If the patient cannot write the advance directive the same situation applies as described above for the declaration. The Advance Directive can be a maximum of five years old and can be revoked or changed at any time. The Act then details the conditions under which euthanasia can be carried out under an advance directive.
3.4.4 Conscientious Objection Article 14 of the Act states that no physician is obliged to participate in euthanasia, and if the attending physician refuses to participate he is obliged to inform the patient of this and of the reasons why not. If the reason the physician will not participate is a medical reason it should be recorded in the medical record. The physician is then obliged to pass the patient’s medical record to another physician designated by the patient or carer.
3.4.5 Insurance Article 15 of the Act states that death by euthanasia is considered a natural death for death certification and insurance purposes.
3.4.6 Residency There is no mention of a residency clause or residency in the Act.
23 3.4.7 Reporting & Monitoring A physician who carries out an act of euthanasia must report the death within 4 working days to the Federal Commission of Control and Evaluation. The commission consists of 16 members designated on the basis of their knowledge and experience of matters relevant to the commission. It is stipulated in the legislation that the commission should consist of eight members who are medical doctors of which four or less are professors in Belgian universities, four members who are lawyers or professors of law in a Belgian university, and four members who are specialists in the problems of patients suffering from incurable illnesses. The commission should contain equal numbers of Dutch and French speakers and have both a French speaking and a Dutch speaking president. The commission established a document of registration that must be completed by a physician each time he carries out an act of euthanasia. The registration document consists of two parts; the first part is confidential and must be sealed by the physician. This first part contains personal information of the patient and the physicians involved. The attending physician sends this first confidential documentation to the commission and it can only be consulted after a decision of the commission. The second part of the document contains information pertaining to the patient’s medical condition, suffering, nature of the request, consultations, procedures followed and the manner of euthanasia. The commission decides on the basis of the second part of the document whether the requirements of the Act have been met. In cases of doubt, the commission can decide (by majority vote) to consult the first part of the registration document and ask the attending physician to send all relevant parts of the patient’s medical record. If the majority decision is taken that the conditions of the Act have not been met the commission sends the documents to the Public Prosecution Service.
3.4.8 Public Opinion There is little evidence regarding the Belgian public’s opinion, however, a survey in the French speaking Belgian newspaper, ‘La Libre Belgique, in 2001 reported that 72% of Belgians support the Belgian law.
3.4.9 Physicians’ Opinions A death certificate study was conducted for all deaths of neonates and infants in the whole of Flanders over a 12-month period (August 1999 to July 2000). The information on the patients was obtained from national registers. The attending physicians for each of the 292 children who died under the age of 1 year were sent an anonymous questionnaire by mail which saw a response rate of 69% (121 physicians). Of these physicians, 79% thought that their professional duty sometimes includes the prevention of unnecessary suffering by hastening death and 58% supported legalisation of life termination in some cases (Provoost et al. 2005).
3.4.10 Palliative Care The founding specialist hospice/palliative care service in Belgium was established in 1985 and consisted of a palliative care unit and a home care service (Unité du Soins Continus, St Luc and Continuing Care, Brussels) (Clark et al. 2000). The Euthanasia Act was twinned with legislation aimed at raising awareness of palliative care services in Belgium.
24 3.4.11 Frequency of Euthanasia The first report of the Federal Control and Evaluation commission covering the period from the enactment of the Act on the 23rd September 2002 to December 2003 recorded 259 cases of euthanasia, corresponding to an average of 17 cases per month. The figures for 2004 were that there were 347 cases of euthanasia, or 29 cases per month. A death certificate study of the levels of euthanasia and physician-assisted suicide in Belgium between June 2001 and February 2002 found that euthanasia accounted for 0.30% of all deaths and physician-assisted suicide accounted for 0.01% of all deaths (van der Heide et al. 2003). 3.5 Switzerland
3.5.1 Legislation & History Article 115 of the Swiss Penal Code stipulates the conditions under which a person assisting another’s suicide may be exempt from punishment. The Article states that whoever incites or assists with a suicide with self-serving motives will be liable to punishment. However, a person who incites or assists with a suicide out of honourable intentions or motives, notably pity or mercy, is exempt from punishment. Therefore assisted suicide is legal under certain circumstances in Switzerland. The Penal Code does not elucidate the conditions under which assisted suicide may occur, only that it must not be motivated by self-serving intentions. There is no requirement for the recipient to be terminally ill or suffering, and the assistance need not necessarily come from the medical profession. The writing of a lethal prescription, if necessary, must come from a doctor, however this is in order to maintain control of dangerous drugs rather than in ensure the involvement of the medical profession. Article 114 of the Swiss Penal Code states that ending a person’s life, even from honourable motives, is punishable by imprisonment, therefore euthanasia is illegal in Switzerland. On 11 December 2001 the Swiss Parliament formally recognised that assisted suicide was lawful under the Swiss Penal Code and that assistance can also be given by a doctor to a patient who needs assistance to end their life. The Swiss Academy of Medical Sciences (SAMS) published guidelines for physicians who may be asked to assist with a patient’s suicide. They emphasise that physician-assisted suicide is not part of medical practice and that no physician is under any obligation to agree to a request for assisted suicide. The guidelines state that if a physician decides to assist a person to commit suicide, it is his responsibility to check the following preconditions: the patient’s disease justifies the assumption that he is approaching the end of life, alternative possibilities for providing assistance have been discussed and, if desired, have been implemented, the patient is capable of making the decision, his wish has been well thought out, without external pressure, and he persists in this wish. These preconditions should also be checked by a third person, who is not necessarily a doctor. The final action in the process leading to death must always be taken by the patient himself (SAMS guidelines, 2004).
3.5.2 “Suicide Organisations” 3.5.2.1 A prominent feature of assisted suicide in Switzerland is the existence of “suicide organisations” which will organise assisted suicide for their members if certain criteria are met. One such organisation is EXIT, which is a German speaking, Zurich based organisation founded in 1982. It has offered
25 assistance with suicide since the 1990s and currently has around 50,000 members. The organisation consists of an annually elected board of five members who are supported by an ethics commission and a compliance commission, who will assist in difficult cases and ensure that the rules of the organisation are followed respectively. EXIT will assist people to commit suicide who have a poor medical prognosis, are in unbearable pain or are suffering from a substantial impairment, and will only do this at the full discretion of the applicant. The applicant need not be expected to die within a certain time to receive assistance. EXIT will only assist Swiss residents and makes it clear that it will not assist people with mental health problems. This results primarily from an occasion in 1998 when the Medical Officer of the Canton of Basle intervened to prevent the suicide of a 29 year old mentally ill woman. This case was publicised and a consequence of this publicity was that EXIT lost members. The ethics commission was established after this case and it was recommended that people who wanted assistance with suicide as a result of a mental illness should not be assisted (Bosshard et al. 2003). The lethal medication, such as pentobarbital, is obtained from the patient’s doctor and the local police are always informed of the death, which is recorded officially as suicide.
3.5.2.2 A second Swiss suicide organisation is DIGNITAS founded in 1998, which will help foreign nationals travelling to Switzerland who must first be members of the organisation (Humphry 2001). The organisation consists of a two-man board with a doctor and a lawyer for advice. Members must pay a registration fee and an annual subscription and in addition to supporting the aims of DIGNITAS, they may seek assistance with suicide themselves. In order to receive assistance with suicide a member must request assistance in writing to DIGNITAS and send a copy of their medical records. The applicant’s medical records are then examined by one of the doctors and it is considered whether a lethal prescription could be written, on the understanding that the doctor could assess the applicant in person. If it is considered that a prescription could be written, the applicant is given a ‘provisional green light’. Mr Ludwig Minelli the Director General of DIGNITAS told the HL Select Committee that “about 80% of the members who have got their provisional green light never call again”(HL oral evidence Q2326). The organisation prefers if the applicant can visit Switzerland twice, once for the consultation and the second time for assistance with suicide although it is recognised that this is not always possible due to serious illness. When arriving for assistance with suicide the applicant is met in Zurich and taken to an apartment rented by DIGNITAS for this purpose. A DIGNITAS representative then remains with the applicant for the remainder of the visit, ensuring all their needs are met and if required the consultation is made with the doctor. The representative will prepare the medication and make it clear that the applicant can withdraw from the process at any time. The applicant him or herself must ingest the medication, preferably taking the medication into his or her own hands. If this is not possible the representative may hold the medication for the applicant. In cases where the applicant cannot take the medication, medication can be intravenously infused. Dr Zucco of EXIT informed the HL Select Committee that when the applicant cannot take the medication and the medication is given intravenously, “there is a small wheel that they have to push”(HL oral evidence Q2417). Once the death has occurred, it is reported to the authorities.
26 3.5.3 Physicians’ Opinions It is considered in Switzerland that assisted suicide is not necessarily part of medical practice and the majority of suicides are not assisted by the medical profession. It is perhaps for this reason that there have not been many studies into the views of Swiss physicians on assisted suicide.
3.5.4 Palliative Care The Swiss Association for Palliative Care (SAPC) conducted a survey among its members by means of an anonymous questionnaire. The questionnaire consisted of multiple-choice questions on positions that might be adopted in different hypothetical scenarios and one open question about the rationale for the answers. Of the respondents, 56% were opposed to physician-assisted suicide and between 84% and 90% were opposed to life-terminating acts without explicit requests. A national survey regarding the offer of palliative care has shown, that the offer of palliative care is insufficient, that there are considerable regional differences and that palliative care is still focused on patients with cancer. The SAPC therefore considers it inadvisable to legalise physician-assisted suicide and euthanasia in Switzerland before every severely ill patient in need has access to quality-controlled palliative care (Prof. F. Stiefel, President of the Swiss Association for Palliative Care, website ref. 1).
3.5.5 Users & Frequency of Assisted Suicide EXIT has suggested that one third of the requests they receive actually result in assistance with suicide. An independent study was conducted regarding the activities of EXIT between 1990 and 2000 through the review of records of assistance in suicide. The EXIT management committee made available all records from between 1990 and 2000. The study reported that EXIT assisted 748 suicides in the Swiss population between 1990 and 2000, corresponding to 0.1% of total deaths and 4.8% of total suicides over this period. The deceased were between 18 and 101 years old, with a mean age of 72 years. There was a statistically significant overrepresentation of women compared to all other deaths and all other suicides with 54.4% of the deceased being women. Residents of German-speaking, more urbanised, predominantly Protestant cantons were more common in the EXIT deaths. The number of EXIT deaths tripled from 110 (1990–1993) to 389 (1997–2000), amounting to 0.2% of all deaths at the end of the study period. This is a highly significant increase in relation both to total deaths, which remained constant in Switzerland, and total suicides, which decreased slightly over the same period. Of the 331 people who died by EXIT assisted suicide in Canton Zurich, 47.4% had cancer, 11.8% cardiovascular/respiratory disease, 12.4% neurological disease and 7.3% HIV/AIDS. The remaining 21.1% suffered from other usually non- fatal conditions, 76% of these were women (Bosshard et al. 2003). In terms of the whole of Switzerland, according to a death certificate study, 0.27% of all deaths were as a result of euthanasia and 0.36% of all deaths were as a result of physician-assisted suicide (van der Heide et al. 2003).
27 3.6 Australia: Northern Territory
3.6.1 Legislation & History On the 25th May 1995 the Northern Territory Parliament in Australia passed the Rights of the Terminally Ill Act 1995 (ROTI). The Act became law on 1st July 1996, making the Northern Territory the first place in the world to have legalised euthanasia. The Northern Territory ROTI Act was appealed against in the Supreme Court, but on the 24th July 1996, it was ruled valid. On the 9th September 1996, a Member of Parliament from Victoria introduced into the Commonwealth Parliament of Australia the Euthanasia Laws Bill 1996, which was designed to repeal the ROTI Act. This Bill received Royal Assent and came into effect on the 25th March 1997. The Euthanasia Laws Bill amended the Northern Territory (Self-Government) Act 1978, which is the Act establishing the Northern Territory as a self-governing political sub-division. The Bill limited the authority of the Northern Territory by excluding laws permitting euthanasia from the Northern Territory’s legislative powers. This was possible because in Australia the Federal Parliament can over-rule the laws of its territories, although it cannot over-rule state laws. Seven patients applied to make use of the ROTI Act whilst it was in place, and a total of four people died under the ROTI Act before it was repealed; these deaths occurred on the 22nd September 1996, the 2nd and 20th January 1997 and the 1st March 1997. Of the remaining patients, two sought euthanasia but died before the Bill became law, and one died after its repeal (Kissane et al. 1998).
3.6.2 Requirements of Due Care The ROTI Act stated that a terminally ill adult who was experiencing pain, suffering, and/or distress to an extent deemed unacceptable to the patient, may request to their attending physician for assistance to end his or her life. The attending physician had to be satisfied on reasonable grounds that the illness was terminal and would result in the patient’s death in the normal course and without application of extraordinary measures. A further requirement was that there were no medical measures acceptable to the patient which could reasonably be undertaken to effect a cure and that any further treatment was only palliative in nature. The attending physician needed to certify that the patient was of sound mind and was making the decision freely, voluntarily and after due consideration. A second independent physician, resident of the Northern Territory, who holds a diploma of psychological medicine or the equivalent was required to examine the patient to confirm the existence and terminal nature of the illness, confirm the prognosis, and determine that the patient is not suffering from clinical depression in respect of the illness. The consultation procedure was amended in the Amendment Act 1996 with the result that two independent persons; one of whom was a physician who held prescribed qualifications or had prescribed experience in the treatment of the terminal illness from which the patient was suffering and the other who was a qualified psychologist. The attending physician should inform the patient of the nature of the illness and its likely course and the medical treatments that might be available, and be satisfied that the patient has considered possible implications of the decision to his/her family. The attending physician must be satisfied that the request was made freely voluntarily and after due consideration. If the attending physician did not have special qualifications in palliative care, defined by the
28 regulations as either 2 years full-time practice in palliative medicine or not less than 5 years general practice, another physician with such qualifications was required to give information to the patient on the availability of palliative care. The psychiatrist was required to examine the patient and confirm that he or she was not suffering from a treatable clinical depression in respect of the illness. The ROTI Act required a period of 7 days to pass between the initial request to end life made to the attending physician and the patient’s signing of an informed consent form, witnessed by two physicians. A further 48 hours later, assistance to end life could be provided. The patient must be informed that they may rescind the request at any time and in any manner. As soon as possible after the rescinding of a request the attending physician should destroy the certificate of request and note the fact on the patient’s medical record. The attending physician must be present at, or provide assistance until, the death of the patient.
3.6.3 Reporting & Monitoring The ROTI Act specified that the attending physician should keep as part of the medical record a note of any oral request and the certificate of request. Additionally, the physician should record their opinion regarding the patient’s state of mind and whether the request was free, voluntary and duly considered. A copy of the consulting physician’s reports must also be included. There were published regulations specifying a checklist for medical records that a physician could use to ensure all requirements were fulfilled and recorded. A death as a result of assistance given under the Act was not taken to be unnatural, but a copy of the death certificate and relevant section of the medical record relating to the illness and death in each case had to be forwarded to the coroner as soon as practicable. The coroner was subsequently required to advise the Attorney General of the number of patients using the Act, who would then report to the legislative assembly. The coroner could at any time, and at his or her absolute discretion, report to the Attorney General on the operation, or any matter affecting, the operation of the Act.
3.6.4 Conscientious Objection Clause 5 of the Act detailed that the physician may for any reason and at any time refuse to give assistance to die. Clause 20(4) states that “a health care provider is not under any duty, whether by contract, statute or other legal requirement to participate in the provision to a patient of assistance under this Act, and if a health care provider is unable or unwilling to carry out a direction of a medical practitioner for the purpose of the medical practitioner assisting a patient under this Act and the patient transfers his or her care to another health care provider, the former health care provider shall, on request, transfer a copy of the patient’s relevant medical records to the new health care provider”.
29 3.6.5 Residency There was no residency clause in the Act.
3.6.6 Insurance & Annuity Policies Clause 18 stated that the sale procurement or issuing of any life, health or accident insurance policies or annuity policies or the rate charged for such a policy shall not be conditioned on or affected by the making or rescinding of a request for assistance under the Act or the giving of that assistance.
3.6.7 Prescribed Penalties The Act prescribed specific penalties for persuading a physician to assist or refuse to assist in the patient’s request, the deception or improper influence in the signing of certificate of request or records to be kept, whether by imprisonment or fine.
3.6.8 Public Opinion In an independent poll of 1,300 people in Victoria, New South Wales, and South Australia conducted during June 2002, 73% of those surveyed thought that physicians should be allowed to give a lethal dose to hopelessly ill patients who were without hope of recovery, 70% thought that the law should allow a hopelessly ill patient to seek assistance from a physician to commit suicide, and 78% thought that the law should be changed so it was no longer an offence to be present at a suicide (website ref. 2).
3.6.9 Palliative Care Palliative Care Australia (PCA) conducted the second census of palliative care in Australia in 1998. The Northern Territory included five palliative care services in 1998 providing eight different programmes (four community, three inpatient and one consultative service). PCA found an increase in people who die receiving palliative care from 56% in 1997 to 62% in 1998. However, comparisons between the 1997 and 1998 data are difficult as there were differences in data collection and analysis. The census revealed that there were significant differences in access to any kind of palliative care service between metropolitan and regional or rural areas.
3.6.10 Users of the Act & Statistics All of the seven patients who applied for euthanasia under the ROTI Act suffered from cancer, and most of these were at advanced stages. Three of the applicants were socially isolated and symptoms of depression were common. Table 2 shows characteristics of all applicants for euthanasia under the ROTI Act, those who received euthanasia under the Act are illustrated in bold (cases 3 to 6).
30 Case Age Martial Cancer Prominent Depressive Other clinical Mode of (years) Status diagnosis pain symptoms issues death 1 68 Divorced Caecum No Suicidal Diabetes, Suicide arthritis 2 64 Single Stomach No No Nausea Natural 3 66 Married Prostate Controlled Past Anaemia, Euthanasia history, constipation suicidal thoughts 4 52 Married Mycosis No Yes, on Pruritus Euthanasia fungoides antidepress- ants 5 69 Single Stomach Controlled No Jaundice Euthanasia 6 70 Divorced Breast Controlled No Frailty Euthanasia 7 56 Single Carcinoid Controlled Yes Fistula with Sedation odour, lymphoe- dema Table 2 Sociodemographic and clinical details of patients who applied for euthanasia under the Australian ROTI Act (Kissane et al. 1998) 3.7 Colombia The situation regarding euthanasia in Colombia is unusual. The Colombian Penal Code stated regarding ‘mercy killing’ that the person who kills someone else for mercy, to end the acute suffering caused by a bodily injury or serious or incurable disease, will be sentenced to imprisonment between 6 months and 3 years. Therefore, euthanasia was illegal in Colombia. However, an anti-euthanasia campaigner believed this law to be too lenient and brought forward a lawsuit to challenge the penalty. In May 1997 the Constitutional Court stated in response to the lawsuit “no person can be held criminally responsible for taking the life of a terminally ill patient who has given the authorisation to do so”. The boundaries of permissible euthanasia were not set and after 18 months the Colombian senate considered the Constitutional Court’s decrees and rejected the interpretations. Euthanasia, along with assisted suicide, is now once again illegal in Colombia (Humphry 2001) and it is reported that no acts of euthanasia were carried out in this period. 3.8 Discussion 3.8.1 There are considerable differences between the enacted legislation in the different jurisdictions where euthanasia or assisted suicide is legal. Each piece of legislation permits different assisted dying acts; Oregon legislated for physician-assisted suicide, the Netherlands legislated for euthanasia and physician-assisted suicide, Switzerland allows assisted suicide (not necessarily physician-assisted) and Belgium legislated for euthanasia. The reasons for legislation being introduced in each case vary, in Oregon it was the result of a citizens’ initiative and in the Netherlands, Switzerland and Belgium it was to regulate and define boundaries of an existing practice. Ms D Annetts told the HK Select Committee, “People think this issue is about choice. In fact, where governments have legislated, it has been much more about trying to make doctors accountable and trying to make the whole dying process much more transparent so that the vulnerable are protected”.
31 3.8.2 The qualifying requirements for assisted dying also vary between jurisdictions. Oregon is the only country that specifies physician-assisted suicide is available only to terminally ill patients with an expected life span of six months. Belgian legislation for euthanasia requires that the patient be in a “hopeless medical situation” and “exhibit constant and unbearable physical or psychological suffering”. Switzerland does not require any particular prognosis to qualify for assisted suicide, however the SAMS guidelines state that the disease of the patient should make it apparent that the patient is nearing the end of life. The Dutch TLRAS Act stipulates that the patient’s suffering is “lasting and unbearable”. Only the Belgian and the Dutch legislation require that the patient is suffering unbearably to qualify for euthanasia or physician-assisted suicide. The amount of detail that the legislation regarding assisted dying goes into differs between countries. In the Dutch situation the legal stance on euthanasia developed more through jurisprudence and endorsement by the Medical Association than through legislation. The Dutch TLRAS Act focuses on reporting and the notification procedure rather than on the requirements and qualifying conditions. In contrast the Belgian and Oregon laws are more fastidious on the requirements of practice.
3.8.3 Both Oregon and Belgium law include a clause for physicians who might have a conscientious objection to assisting with assisted dying. However, there is no such clause in the Dutch Act or specified by the Swiss Penal Code. The Dutch guidelines state that physicians can refuse to perform procedures to terminate life and nurses can refuse to be involved in preparations for euthanasia and that neither can be censured for failing to comply with a request for euthanasia. The SAMS guidelines also state that no physician is under any obligation to agree to a request for assisted suicide.
3.8.4 The age and the illness of people taking advantage of assisted dying in the jurisdictions it is, or has been, legal in are similar. In Oregon and the Northern Territory of Australia the mean age of those receiving physician- assisted suicide or euthanasia respectively was 64 and in Switzerland the mean age was 72. A death certificate study in the Netherlands suggested that the occurrence of euthanasia or physician-assisted suicide is rare among the over 80s. The majority of recipients of assisted dying in all jurisdictions that have legalised assisted dying, either presently or in the past, suffer from cancer.
3.8.5 The frequency of assisted dying varies between the four jurisdictions in which it is currently legalised. The lowest frequency is in Oregon where only 0.125% of all deaths in 2004 were as a result of physician-assisted suicide. The highest frequency by a large margin is of euthanasia in the Netherlands where it accounted for 2.6% of all deaths in 2001. Physician-assisted suicide in the Netherlands accounted for 0.2% of all deaths in 2001. Euthanasia in Belgium and assisted suicide in Switzerland accounted for 0.3% and 0.27% of all deaths respectively in 2001-2002. The figures from the Netherlands suggest that euthanasia is preferred over physician-assisted suicide as a mode of assisted dying despite Dutch guidelines suggesting that physician-assisted suicide should be favoured.
32 3.8.6 The reporting systems of Oregon, the Netherlands and Belgium all require the attending physician to submit a report to show that all requirements of due care have been met. These reports are assessed by a committee of some kind and in cases of doubt that all the requirements have been fulfilled the case is passed on to a higher authority for further examination. There is no standardised reporting procedure in Switzerland, only that the authorities should be notified of the death. In order to promote the quality of the euthanasia practice, the euthanasia notification procedure in the Netherlands is followed by systematic feedback to the physicians. However, in Belgium the personal details of the physicians are guarded by the sealed first part of the report, which will be broken only when the control commission finds some anomaly or deficiency in the declaration. Therefore, unless the Evaluation and Control Commission makes use of its prerogative to contact the physician, the Belgian physicians may be less supported by the notification procedure to improve their knowledge and skills in euthanasia (Deliens et al. 2003).
3.8.7 The comparison between the four jurisdictions with legalised assisted dying is problematic due to the differing amount of research that has been conducted in these jurisdictions. For example there has not been as much research into the situation in Belgium and Switzerland, rather the focus for research has been on Oregon and the Netherlands. Furthermore, comparisons between the frequency of assisted dying in the jurisdictions is difficult as the studies that produce the statistics are not standardised between the countries and have used different methods of data collection and analysis. 4. The Legal Situation Elsewhere Around the World 4.1 Introduction This section briefly examines the current legal situation regarding suicide, assisted suicide and euthanasia in different jurisdictions. 4.2 Austria The Austrian Penal Code Article 77 states that whosoever ends the life of another person in response to the person’s earnest and insistent demand shall be punished with imprisonment of between six months and five years. 4.3 Denmark With respect to the law concerning euthanasia, Section 239 of the Danish Penal Code states that the penalty in the case of ending the life of another at their explicit request should be simple detention for not less than sixty days or imprisonment not exceeding three years. Section 240 criminalises the assistance of another person’s suicide; the penalty is either a fine or simple detention. 4.4 Finland The Criminal Code in Finland was fully revised in the 1960s. At this time there was discussion as to whether assisted suicide should be an offence, however as suicide was not an offence it was felt that assisted suicide should not be criminalised.
33 4.5 France Although the French Penal Code does not formally prohibit assisted suicide, such a case could be prosecuted under 223-6 of the Penal Code for failure to assist a person in danger. The National Consultative Ethics Committee for Health and Life Sciences (CCNE) was established in 1983 to give opinions on the ethical problems raised by progress in the fields of biology, medicine and health. In January 2000 they published their findings in relation to voluntary euthanasia. The report stated “It is never healthy for a society to experience situations where discrepancy between rules as they are laid down in real life is too glaring… Because of this, there is a kind of ethical denial at two levels: hypocrisy and concealment on the one hand; and unequal outcome depending on which procedures are followed and which jurisdictions consulted (if they are) on the other.”
4.6 Germany Assisted suicide is not formally prohibited by the German Penal Code and there has been no penalty for the action since 1751. However, parts of the Penal Code could be used to prosecute a person assisting suicide because they failed to help the person to live.
4.7 Italy The concept of homicide with consent is recognised by Article 579 of the Italian Penal Code. Anyone who ends the life of a person with his consent is punishable by imprisonment of between six to fifteen years, a lesser charge than homicide without consent.
4.8 Luxembourg Assistance in suicide is not illegal under the Penal Code in Luxembourg, although under 410-1 of its Penal Code a person could be penalized for failing to assist a person in danger. On 15 January 2003, Socialist (LSAP) and Greens representatives presented a joint draft Bill that would change the laws regarding euthanasia in Luxembourg. This draft Bill was narrowly rejected on 12 March 2003, where the votes were 27 to 28 against the Bill, including one abstention and four absentees who did not vote. Subsequently, a national petition was published before the elections in June 2004, and the euthanasia debate is still active.
4.9 Norway In Article 235 of the Norwegian Penal Code the concept of consenting to death is recognised. If a person’s life is ended with consent or if any person out of compassion deprives a hopelessly ill person of his life, or is an accessory thereto, the penalty may be reduced below the minimum otherwise provided and to a milder form of penalty. Article 236 is directed at persons who explicitly co-operate in the suicide of another.
34 4.10 Poland In the Polish Penal Code, Article 150 states that if someone helps another person commit suicide with that person’s permission they will be subject to between three months and five years imprisonment. However, in some extreme cases for example, where someone has assisted the suicide of someone who is terminally ill and who has made that request to die, there will be no penalty. 4.11 Portugal The Portuguese Penal Code makes a distinction regarding homicide and homicide with consent. Article 134 of the Penal Code states that whosoever ends the life of another person as a result of the determined and express request of that person shall be punished with imprisonment of up to three years. This is a lesser punishment than that for homicide without consent. 4.12 Sweden Under the Swedish Penal Code neither suicide nor assisting in another’s suicide is a crime. However, a doctor playing a very active role or with a clearly emotionally unstable patient, may face murder charges (Materstvedt & Kaasa, 2002). Euthanasia is covered directly in the usual regulations and policies pertaining to killing or murder. The Swedish Penal Code does not contain a special section concerning killing on request. 4.13 Spain The Spanish Penal Code changed in 1995 with the inclusion of an article which recognises that there may be circumstances where a party assists another person to die where that person is suffering from a terminal disease or is experiencing serious and incurable suffering. In the new Article 143.4 the active co-operation in the assistance of another person’s death at the express desire of the patient who is suffering from a terminal disease or a disease which produces serious and permanent suffering, will be punished with a lesser penalty to the other penalties stipulated at Article 143(2) or Article 143(3). 4.14 Western Australia In Western Australia a Voluntary Euthanasia Bill received a second reading on September 18th 2002. The Bill was to allow voluntary euthanasia for mentally competent adults suffering from a medically diagnosed illness that is likely to cause death. The Bill proceeded no further than the second reading. 4.15 Discussion In several European countries, assistance in the suicide of another is not illegal. These countries are France, Finland, Germany, Luxembourg and Sweden. However, in cases of assisted suicide a person could still be charged with failure to assist a person in danger. In other countries, there is a lesser charge associated with assisted suicide (Poland, Demark) or killing in response to “the person’s earnest and insistent demand” or “out of compassion” for a “hopelessly ill person” (Austria, Denmark, Norway, Portugal and Spain). Spain amended its Penal Code in 1995 to recognise that
35 active co-operation in the assistance of another person’s death at the “express desire of the patient who is suffering from a terminal disease or a disease which produces serious and permanent suffering”, will be punished with a lesser penalty. 5. The Ethical Arguments 5.1 Introduction In this section the ethics of assisted dying and the significance of the two concepts of autonomy and sanctity of life will be discussed. The ethical arguments for and against euthanasia or assisted suicide tend to centre on the concepts of autonomy and the sanctity of life. There is much debate and literature regarding the relative importance of these two concepts in the assisted dying debate, and their use in the arguments for and against euthanasia and assisted suicide, will be discussed. Recent relevant rulings in the UK and European Courts concerning autonomy and sanctity of life will also be considered. 5.2 The Ethics of Assisted Dying Prof. J Harris of the Institute of Medicine Law and Bioethics at Manchester University discussed the ethics of assisted dying with the HK Select Committee. He outlined the ‘policeman’s dilemma’ and its bearing on the argument for euthanasia and assisted suicide. The policeman’s dilemma is as follows; “A lorry driver is trapped in the burning cab of his vehicle following an accident. A policeman is on the scene and sees that the driver cannot be extracted before the flames get to him and he is burned alive. The policeman can let him be burned alive or can give him a quick and relatively painless end by shooting him in the head. The driver says, ‘please shoot me, don’t let me be burned alive!’ Those opposed to euthanasia in all circumstances must give one answer to the policeman’s dilemma, those in favour will give the alternative, most people will feel that policeman to have been justified in such a case. Now consider a modified policeman’s dilemma, suppose the policeman can see what’s happening but cannot communicate with the driver he sees that the driver must be burned alive but cannot ask what he wants or hear his requests. Would the policeman still be justified in sparing the driver terrible 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”. Prof. J Harris explains further that “where the inevitable outcome of a decision must be that a human individual will die, and where that individual is a person who can consent then that decision is ethical if and only if the individual consents. In very rare and extreme cases such a decision will be ethical in the absence of consent where, in cases such as the policeman’s dilemma, it would be massively cruel not to end life in order to prevent suffering which is in no other way preventable” (Harris 2003). Prof. J Harris told the HK Select Committee that “It is both ethically acceptable and, indeed, humane, decent and reasonable, to end people’s lives at their request, at least in some circumstances... If you know that people want to [die] and you know the consent is genuine and informed and so forth, then that deals with most of the ethical worries that we ought to have”.
36 5.3 Autonomy The concept of autonomy has assumed central importance in much bioethical theorising and medical practice. Prof. J Harris has defined autonomy as “the value expressed as the ability to choose and have the freedom to choose between competing conceptions of how to live” he goes on to state, “It is only by the exercise of autonomy that our lives become in any real sense our own. By shaping our lives for ourselves we assert our own values and our individuality” (Harris 2003). The relevance of autonomy to the argument for euthanasia or assisted suicide is that some people believe that a person has the right to exercise his or her autonomy in deciding when and how their life should end. Prof. J Harris told the HK Select Committee that his personal views on autonomy were that “I would want that freedom [to chose death in certain circumstances]. I would regard it, as another philosopher has said, as a cruel tyranny exercised over me for somebody else to deny me a death that I sought, when I had come to a mature and considered judgement that that was the course that I wanted my life to take, and the manner in which I wanted my life to end”. This opinion is similar to that held by many people who uphold the concept of autonomy as an argument for the legalisation of euthanasia or assisted suicide. The argument of autonomy for assisted dying has also been analysed by Margaret Otlowski who published a thorough analysis of the law in numerous common law jurisdictions and argued that euthanasia ought to be a valid legal option (Huxtable & Campbell 2003). However, although the importance of autonomy is appreciated by the majority of people, whether they support the legalisation of euthanasia and assisted suicide or not, many people recognise the fact that autonomy has its limits. 5.4 The Limits of Autonomy 5.4.1 A British Medical Association (BMA) conference to promote the development of consensus within the BMA on euthanasia and physician- assisted suicide in 2000 recognised the importance of patient autonomy but stressed that it is important to consider the balance between respect for the patient’s autonomous request and any distress and harm that may be caused to those close to the patient. In defining where the limits of autonomy may lie Prof. J Harris told the HK Select Committee “Broadly, my autonomy ends where your autonomy begins. So, if the exercise of my autonomy limits your autonomy in some way, that immediately creates a question of balance”…“I would defend autonomy so long as broadly speaking it does not violate the autonomy of others, and in the case of decisions about one’s own death I think one has to ask ‘Who is the person primarily concerned?’ – clearly the subject themselves – ‘Are others affected by someone’s death?’ I think the crucial question is whether the greater evil is to deny the individual subject the autonomous control of their own destiny, and allow others to decide when they die and the manner of their death or not, and I think that is the greater violation”.
5.4.2 The concept that an individual exercising their autonomy to choose their time and mode of death may translate to a “right to die” is controversial as this implies that there may therefore then be a duty to assist someone to die if that is what they wish. This was explained by Prof. G van der Wal who stated; “Given that a valid right implies the existence of a duty to respond that cannot be reasonably refused, and that there may be reasonable moral
37 compunction about either killing patients or assisting in their suicide, it can be argued that a right to die by euthanasia or physician-assisted suicide does not exist” (van der Wal 2003). Dr R Huxtable, a lecturer in Medical Law and Ethics at the University of Bristol, told the HK Select Committee, “With regard to respect for autonomy, it is permissible and, in fact it is mandatory, for health professionals to stand aside, if the patient says no to treatment, or ‘no more treatment’, provided, of course, that the patient is competent. But, of course, with regard to autonomy, English law still will not go to the ultimate extreme and allow active voluntary euthanasia and/or assisted suicide, as seen recently with the Diane Pretty ruling” (see section 5.6.3 for information on the Diane Pretty case). 5.5 Sanctity of Life 5.5.1 The majority of religious arguments against euthanasia and physician- assisted suicide maintain that life is “God-given” and that “only God has the right to take life away”. The Ven B Partington OBE, Archdeacon, speaking on behalf on the Churches, told the HK Select Committee “That is the gift we have been granted, to have life, and that we have to use it to the full all our life, and if we devalue someone’s life at the very end, in their vulnerable state, then we are going to devalue life throughout”. In written evidence submitted to the HK Select Committee a number of church leaders in the IOM stated that “some see a conflict between the special character of human life as God- given and so deserving of special protection and the insistence by some of the right to determine when their lives shall end. We do not believe that a dying or seriously ill person should be kept alive by all means for as long as possible, nor do we believe that the right to personal autonomy is absolute. It is valid only when it recognises other moral values, especially the respect due to human life as such, whether someone else’s or one’s own” (Ven B Partington, written evidence on behalf of a number of church leaders in the IOM, Ref. No. 89).
5.5.2 Some individuals and organisations argue that religious arguments against a change in the law are not sustainable. Mr M Kermode, speaking on behalf of Mec Vannin, told the HK Select Committee that “Matters of belief in this area are specific to each and every individual. Whilst respecting the rights of religions to instruct and advise their own followers in their respective moral ethics and theology, such ethics cannot be reasonably imposed upon those who do not adhere to them… Mec Vannin is a secular party and we live in a fairly secular society… and we do not consider, on matters so close to the individual, that religious ethics should be used as a guiding factor in legislation such as this”.
5.5.3 However, the sanctity of life argument is also applicable in secular arguments, John Keown has written that life is of such intrinsic value that euthanasia cannot be tolerated (Huxtable & Campbell 2003). Keown writes in opposition of rulings such as the ruling in the Anthony Bland case (see section 5.6.2), and feels that the sanctity of life doctrine has been there as a cornerstone of English law, however now has been chipped away by rulings in the UK since the early 1990s (Dr R Huxtable, HK oral evidence).
38 5.6 Rulings in Autonomy & Sanctity of Life 5.6.1 The application of the principles of autonomy and sanctity of life in law is not entirely clear and there have been rulings since the early 1990s that have supported both concepts.
5.6.2 A landmark House of Lords judgement in autonomy and the sanctity of life was made in the case of Anthony Bland who was in a persistent vegetative state (PVS). In this case Anthony Bland’s parents accepted that their son had ceased to exist in any real sense although his body remained alive. Mr and Mrs Bland asked the UK Courts to declare that it would be lawful for medical staff to withdraw artificial nutrition and hydration and other life sustaining measures. The House of Lords ruled that it would be lawful to remove all life-sustaining measures in 1992. The life sustaining measures were subsequently removed on 22 February 1993 and Anthony Bland died on 3 March 1993.
5.6.3 In 2001 and 2002 Mrs Diane Pretty sought to persuade the domestic and European courts that the UK prohibition of assisted suicide infringed on her human rights by reference to the Human Rights Act 1998. Mrs Pretty suffered from Motor Neurone Disease (MND) of which no treatment can prevent its progression; respiratory failure and pneumonia are usual causes of death for this disease. Pretty told the courts she was frightened and distressed at the suffering and indignity she would endure. She wanted to be able to control how and when she died and wanted assistance from her husband, who also wanted medical advice. The case was lost in the domestic Courts and so was taken to the European Court of Human Rights. The argument in the European Court was based on the assertion that the lack of assistance for Pretty to commit suicide was in breach of several Articles of the European Convention on Human Rights (ECHR). These Articles were Article 2 which protects the right to life, this was interpreted as the right to chose whether to live or die and that failure to guarantee this right breached Article 3 which protects the right to be free from inhuman and degrading treatment. Article 8 protects peoples’ private lives it was maintained that this was violated by the state interfering with her right to die. Due to her illness requiring assistance to commit suicide, and this not being permitted legally, it was considered that she was therefore discriminated against in her enjoyment of other Convention rights, this contravenes Article 14 which protects the right to be free from discrimination in enjoyment of other Convention rights. Pretty’s approach in courts was to ask for a declaration that the Director of Public Prosecutions (DPP) would not take action against her husband if he assisted her suicide. The European Court focussed on whether the ECHR required the UK to permit Mrs Pretty’s request, rather than if it were within the remit of the DPP to grant immunity. All fifteen judges in the domestic and European courts found that the UK prohibition on assisted suicide was not incompatible with the European Convention on Human Rights.
5.6.4 In the case of Re B in 2002 a paralysed patient sought to have her artificial ventilation withdrawn, contrary to the wishes of her professional carers, who believed Ms B had not exhausted all the possible treatment options. The courts ruled in this case that ventilation could be withdrawn and Ms B passed away as a result (Huxtable 2002).
39 5.6.5 At the beginning of 2004 Mr Burke sought a judicial review of the General Medical Council’s (GMC) guidance on withholding and withdrawing treatment (Withholding and Withdrawing Life-Prolonging Treatment: Good Practice in Decision Making). Mr Burke suffers from cerebellar ataxia with peripheral neuropathy, a progressively degenerative condition that follows a similar course to multiple sclerosis. As a result Mr Burke will require artificial nutrition and hydration (ANH) at some time in the future, he therefore brought judicial review proceedings to clarify the circumstances in which ANH could lawfully be withdrawn. He challenged aspects of guidance issued by the GMC as being unlawful, and incompatible with his human rights, in particular Articles 2, 3, 6, 8 and 14 of the ECHR. On the 30th July 2004 Mr Justice Munby ruled in favour of Mr Burke saying it was up to the patient, if competent, to decide what was in his best interests and ruled that “Important as the sanctity of life is, it may have to take second place to human dignity. In the context of life-prolonging treatment the touchstone of best interests is intolerability. So, if life-prolonging treatment is providing some benefit it should be provided unless the patient’s life, if prolonged, would from the patient’s point of view be intolerable”. The GMC subsequently appealed against the High Court’s ruling and the Court of Appeal granted that appeal (28th July 2005). The Court of Appeal found that those sections of the General Medical Council's guidance on withholding and withdrawing life-prolonging treatment challenged by the claimant were lawful and their application did not infringe articles 2, 3 or 8 of the Human Rights Convention. The ruling underlined a competent patient’s right to autonomy and self determination in that a patient can refuse treatment, a patient cannot demand treatments that have no clinical benefit, but a patient who, “regardless of the pain, suffering and indignity of his condition, makes it plain that he wishes to be kept alive”, that for a “doctor deliberately to interrupt life-prolonging treatment in the face of a competent patient’s expressed wish to be kept alive, with the intention of terminating the patient’s life, would leave the doctor with no answer to the charge of murder” (paragraph 34 of the judgement). 5.7 Discussion 5.7.1 The policeman’s dilemma described by Prof. J Harris is criticised in some cases as it is considered that laws cannot be made on the basis of hard cases, of which the policeman’s dilemma is one. However, as Prof. J Harris explained to the HK Select Committee the case of the policeman’s dilemma, and other hard cases tell us whether or not we have a principled objection to particular courses of action. “They help us to see that it is either incoherent or cruel, or both, to think that we can always and without exception say that it is wrong to take the life of another human individual. Once we realise that we do not think that, we can start to think, hopefully, humanely, compassionately and creatively about which cases in which we think we should do this or permit it to be done and which we do not”.
5.7.2 The concepts of autonomy and the sanctity of life are the main issues in the ethical debate on euthanasia and assisted suicide. However, belief in either issue is not exclusive, a person can acknowledge the importance of both issues regardless of their views on euthanasia or physician-assisted suicide. The consequence lies in the relative importance of either issue to the individual. The right to autonomy, and therefore the right to decide ones own time and mode of death, may be limited once the exercising of that right
40 encroaches on the autonomy of others. It is considered that the limits of autonomy lie at the point where an individual excising his or her autonomy affects the autonomy of another individual.
5.7.3 There are legal cases in which the Courts have ruled to allow a person to die, whether by exercising their autonomous rights such as the case of Ms B, or ruling against the argument of the sanctity of life as in the case of Mr Bland. However, in the Pretty case it was ruled that Mrs Pretty did not have a right to die under the ECHR and so this illustrates the limits of autonomy. 6. Practical Issues 6.1 Introduction This section examines a variety of practical issues associated with legislation regarding assisted dying. 6.2 Demand
6.2.1 Who Might Request Assisted Dying & Why 6.2.1.1 It is important to attempt to understand who requests assisted dying and the reasons these requests are made. The mean age of requests for assisted dying varies according to regime or study. In Oregon the mean age of those who make a request for physician-assisted suicide is 68 years (Ganzini et al. 2000) and the median age of those who received physician-assisted suicide in 2004 was 64 (this has been 70 in previous years, Oregon Department of Human Services (DHS) 7th Annual Report). In the Netherlands requests for assisted dying are uncommon among people aged 80 or older (Onwuteaka-Philipsen et al. 2003). In 2004 there was an equal number of males and females who died through physician-assisted suicide in Oregon (DHS 7th Annual Report). However, according to the records of the Swiss suicide organisation EXIT, there have been statistically significantly more females assisted to die than males, although this margin is small (54.4% were females, section 3.5.5). The level of education appears to affect the likelihood of making a request for physician-assisted suicide in Oregon as only 5% of the requests studied by Ganzini and colleagues had not completed high school (Ganzini et al. 2000). This is reflected in the official figures for those who died through physician-assisted suicide, where individuals with a baccalaureate degree or higher were 8.3 times more likely to use physician-assisted suicide than those who did not have this level of education (DHS 7th Annual Report). In terms of illnesses or disease, cancer was the most common diagnosis among those who requested assisted dying in both Oregon and the Netherlands (Ganzini et al. 2000; Onwuteaka-Philipsen et al. 2003) and cancer was the sole diagnosis among those who applied for euthanasia under the Australian Rights of the Terminally Ill Act (ROTI Act) (Kissane et al. 1998). Furthermore, cancer was the most common diagnosis for deaths in the Canton Zurich assisted by EXIT between 1990 and 2000, with 47.4% of these deaths being among cancer sufferers.
6.2.1.2 Many factors are involved in the reasons why some patients request assisted dying. A variety of studies have challenged the common assumptions about reasons for requests and revealed that individual requests for euthanasia and physician-assisted suicide are complex in origin and may
41 include personal, psychological, social, cultural, economic and demographic factors. In a study of requests for physician-assisted suicide received by 2649 Oregon physicians it was found that requests were not primarily made because of physical symptoms, although a fear of worsening symptoms may influence the decision. Rather than physical reasons it was found that requests were made for psychological or existential reasons such as loss independence, a poor quality of life, a readiness to die and a desire to control the circumstances of death. Those who made requests were not socially vulnerable, demonstrated by the fact that requests were not made due to financial concerns or poor social support (Ganzini et al. 2000).
6.2.1.3 The reasons why six patients with advanced cancer, receiving palliative care in the United States of America (USA), who had expressed a wish for euthanasia, were examined in detail. There appeared to be five themes involved in the patients decisions which were, the reality of disease progressing, perception of suffering, anticipation of a future worse than death, desire for good quality end of life care, and presence of care and connectedness. Again, the reasons for requests are not confined to physical and functional concerns but include psychosocial and existential issues (Mak et al. 2003).
6.2.1.4 A qualitative study of 32 HIV-1 and AIDS patients in Canada revealed that the desire for euthanasia and assisted suicide was affected by two main factors. These were disintegration resulting from symptoms and loss of function, and loss of community. The loss of community was defined as the diminishment of opportunity to initiate and maintain close personal relationships. These two factors combined resulted in a perceived loss of self. This study highlighted the importance of social influences on the desire for euthanasia and assisted suicide (Lavery et al. 2001).
6.2.1.5 This recently prevailing view of the importance of social and existential issues in requests for assisted dying was also expressed by Dr J Garland (a Clinical Psychologist with the Oxfordshire Mental Healthcare Trust), “In my experience, wish for assisted dying does not, by any means, always link up with fear or concern or actual experience of pain as such. Pain is a very subjective experience; it is difficult to measure and assess. There is a whole complex of reasons why people seek assisted dying; pain is one of them, but it is not by any means the only one” (HK oral evidence).
6.2.2 Demand for Assisted Dying in the Isle of Man 6.2.2.1 Obviously there must exist a demand for assisted dying before the decision is made to provide it. There is conflicting evidence regarding the extent of this demand in the IOM. Mr J Quinn, speaking as the Chairman of the Management Committee of Hospice Care, told the HK Select Committee, “I have asked my team, and I am told that, in the 21 years of providing hospice care to over 2,500 patients on the Island, no-one is aware of any patient or family member asking for an assisted death or to hasten their death”. Similarly, Prof. A Johnson, a retired Professor of Surgery and former teacher of medial ethics, felt that demand was very low, “I have only been asked for direct euthanasia, I think, in my forty years practice, on two or three occasions – a lot of people have said ‘I wish I could die’, or ‘I wish I was dead’, but not direct persistent asking” (HK oral evidence). The IOM Medical
42 Society found that “70% [of the 57% of members of the IOM Medical Society who responded to the survey] have not been asked to provide euthanasia even once in the last 5 years of their practice. 18% of doctors report being asked for euthanasia on 1 or 2 occasions in the last 5 years, 4% report being asked 3 to 5 times, 7% being asked 6 to 10 times and one doctor reports being asked more than 10 times” (Dr B Harris, representing the IOM Medical Society, HK oral evidence, see section 7.5). Public written evidence was also submitted to the HK Select Committee that suggests though the demand is small it is genuine (section 8.2.3.17).
6.2.2.2 It has been suggested that another way of assessing demand for assisted dying is to examine rates of suicide among the terminally ill. Prof. A Johnson told the HK Select Committee, “I think that I have got no experience of anybody committing suicide. I was talking to a person who ran a big hospice – 1,000 patients a year – and he said that two had committed suicide out of all the patients he had had in there over 10 years”. Dr B Harris emphasised that terminally ill patients and those with serious progressive and physical illness often have large quantities of prescribed medication at their disposal and considered that if they had such a desire to commit suicide, one might have expected at least some of them to have tried to commit suicide by taking an overdose of their prescribed medication, “In reality, I do not know of even one case where this has happened on the Isle of Man in the last 10 years” (Dr B Harris, HK oral evidence). However, evidence from Oregon suggests that the option of physician-assisted suicide prolonged the lives of those who were granted the option, otherwise they would have taken their own lives whilst they were still able to do so (The Quality of Mercy, VES report, 2004).
6.2.2.3 Although demand may be low, as might be expected, it should be considered whether there is sufficient demand to justify a change in the law. The report of the Guernsey Death with Dignity (DWD) Working Party asked whether one person suffering merited a change in the law. In expressing his opinion on this Dr J Garland told the HK Select Committee that “The law is for individuals as much as it is for vast masses of supposedly vulnerable people, and if the law cannot exert itself to serve individual needs, even if these needs are quite rare and may not be freely expressed, then the law is reduced and diminished as a result of that”.
6.2.2.4 When considering the merits or otherwise of euthanasia or physician- assisted suicide for the IOM the numbers of people who might take advantage of any related legislation should be taken into account. In order to speculate what the demand might be if different regimes were employed statistics from those regimes can be applied to Manx figures. The expected uptake in the IOM for euthanasia and physician-assisted suicide under different regimes can be calculated using the statistics from the Netherlands and Oregon. These calculations are based on a population of the IOM at July 2005 of 75,049, and a death rate of 11.26 deaths per 1,000 members of the population which corresponds 1.126% of the population dying each year (statistics from CIA, website ref. 3). If the statistics reported by Onwuteaka- Philipsen and colleagues for the Netherlands are applied (2.6% of all deaths caused by euthanasia, and 0.2% of all deaths caused by physician-assisted suicide, according to death certificate study, 2003) to the IOM death rate there
43 would be 21.97 deaths from euthanasia per year and 1.69 deaths from physician-assisted suicide per year, with a total of 23.66 deaths by assisted dying per year in the IOM. However, if the Oregon model is applied using statistics from the most recent report from the Oregon DHS (1 in 800 deaths were as a result of physician-assisted suicide in 2004), there would be 1.05625 deaths in the IOM per year as a result of physician-assisted suicide. 6.3 Service Provider 6.3.1 In all the jurisdictions with legislation for assisted dying, apart from Switzerland, assistance to die is given by a physician. It is the common opinion that the provision of assisted dying would be within the health care sector. The framework for legislation submitted by Mec Vannin suggested that “such a facility [euthanasia or assisted suicide] must only be available through medical establishments that are primarily concerned with the treatment of illness, i.e. there should be no question of ‘death clinics’. What we are saying there is that you could not open up an establishment purely for the purpose of assisting suicide; it would have to be done on the back of existing medical facilities primarily concerned with treating and curing illness” (Mr M Kermode, representing Mec Vannin, HK oral evidence). Mr J Quinn emphasised that if legalised, euthanasia or assisted suicide would not be offered by Hospice Care, “If legalised, as the hospice philosophy is currently drawn, it could still not be an option which we would offer our patients. It would take a change of hospice philosophy to enable that to happen, and I would say I would find it hard to image that that would ever happen, as to do so would, in a sense, be an admission that Hospice Care has failed to provide the patients with the palliative care they require” (HK oral evidence).
6.3.2 There have been suggestions that any legislation regarding assisted dying would not be practicable due to the high numbers of those who might be expected to enable it invoking the conscientious objection clause and not participating. The IOM Medical Society survey of its members, asked members if they agreed with the following statement, “If the IOM Government introduced the proposed legislation I would not be prepared to take an active part in providing euthanasia myself”. In response, 78% (66 individuals) of responding members agreed or strongly agreed with this statement and 17% (14 individuals) disagreed or strongly disagreed with it. This implies that 14 of the members who responded to the survey would be willing to take an active part in providing euthanasia, however, the IOM Medical Society includes retired practitioners; with this taken into account there are seven currently working practitioners who responded to the survey willing to take an active role in providing euthanasia. There is no set or suggested figure of participating physicians required to make legislation practicable, nonetheless considering there are 63 physicians in the IOM that did not respond to the survey, the practice of the legislation might well be feasible.
6.3.3 It is the opinion of some people that the practice of euthanasia or assisted suicide should not be within the scope of the medical profession at all. One doctor commented in the IOM Medical Society survey that “this is a social and political issue, not a medical one. Those who seek to medicalise it do so in an attempt to sanitise it”. Prof. A Johnson told the HK Select Committee, “I
44 think that if you did introduce legislation, I think doctors should have nothing to do with it at all. I think the caring doctor’s only responsibility should be to give the facts to his patients and then you could arrange for technicians to be trained to do this, out of the caring context”. The medical profession is not involved in all jurisdictions where assisted dying is legislated for. In Switzerland, assisted suicide is not necessarily practiced by physicians, the Swiss Academy of Medical Sciences (SAMS) guidelines underline that assisting suicide is not part of medical practice. However, the removal of assisted dying from the field of the medical profession may give the wrong impression of the rights of those who seek it. Dr Wilks of the British Medical Association (BMA) told the HL Select Committee, “Establishment of a separate service is a kind of signal that there is a different group of patient who do not deserve the same kind of overall assessment and communication and discussion about options, and that they can go off to the euthanasia service instead” (HL oral evidence Q235). 6.4 The ‘Slippery Slope’ 6.4.1 The phrase ‘slippery slope’ is commonly heard in arguments against assisted dying. However, it is rarely defined and has been used in conjunction with a variety of issues. Broadly, the term refers to the extension of the application of assisted dying once legislated for to those for whom it was not originally intended. The ‘slippery slope’ argument can be divided into five categories and these will be discussed below.
6.4.2 Incremental Extensions This category refers to the possible incremental extensions of the scope of the legislation through subsequent amendments once it has been enacted. The possibility of incremental extensions was raised by Dr B Harris in oral evidence to the HK Select Committee, he felt that, “Over time, agreement for voluntary euthanasia for advanced cancers runs the risk of becoming agreement for less severe clinical situations such as early cancers, multiple sclerosis, Parkinson’s disease, dementia, rheumatoid arthritis, emphysema, mental debility and possibly, eventually, just old age. This could be legislation that will ultimately permit actions different from its original purpose”. Prof. A Johnson told the HK Select Committee that since the introduction of euthanasia in Belgium, “Two of their MPs are now trying to introduce euthanasia for infants and children…everybody else does not like the words ‘slippery slope’, but if that is not a slippery slope, I do not know what is”. Lord Joffe has said that he would support amendments to the ADTI Bill, “I believe that this Bill initially should be limited, although I would prefer it to be of much wider application, but it is a new field and I think that we should be cautious” (HL oral evidence Q89).
6.4.3 Elastic Interpretation 6.4.3.1 In both oral and written evidence there was much reference to the elastic interpretation of the law regarding abortion. When the UK Abortion Act was established in 1967 it was intended to be applied in a more restrictive manner than it is today. In 1967/8 there were 23,641 abortions carried out per year, the figures for 2002 were 175,600 (National Office of Statistics), which corresponds to one in five pregnancies. There have been no significant amendments to the Act but the interpretations of its provisions, such as the mental health of the mother, have changed to allow its wider application.
45
6.4.3.2 To examine this issue in practice we can look at the situation in countries where there is assisted dying legislation in place and consider whether there has been an increase in the practice of assisted dying over the years. In the Netherlands the number of requests for euthanasia and assisted suicide stabilised after 1995. Using data from the Dutch Sentinel Practice Network (60 GPs) Marquet and colleagues found that there was an increase in the number of requests between 1979 and 1985, which they believed reflected the process of liberalisation, the number of requests then stabilised since 1995 (Marquet et al. 2002). The nationwide studies conducted in the Netherlands in 1990-1, 1995 and 2001 using interviews with physicians and death certificate studies suggest that there is no dramatic increase in the practice of euthanasia or assisted suicide. The figures for euthanasia through the death certificate study were, 1990 1.7% (of all deaths), 1995 2.4% and 2001 2.6%, however in the interview study there was no further increase in the practice of euthanasia in 2001. For physician-assisted suicide the death certificate study showed that there was no change in the level of physician-assisted suicide between 1990 and 2001, it stayed constant at 0.2% of all deaths. According to the interview study the level first rose and then dropped (1990 0.3%, 1995 0.4%, 2001 0.1%) (Onwuteaka-Philipsen et al. 2003). These data do not appear to support the idea that physicians in the Netherlands are moving down a slippery slope. In Oregon the latest figures for physician-assisted suicide show a decrease in occurrence compared to the last two years. There were 35 deaths in 2004 by physician-assisted suicide which is lower than 2003 or 2002 (Oregon DHS 7th Annual Report); this is illustrated in Figure 1 (section 3.2.15). These empirical data suggest that assisted dying in these countries is not on a ‘slippery slope’ through the broader interpretation of the law.
6.4.4 Pressure on Vulnerable Groups 6.4.4.1 The majority report in the Guernsey DWD Working Party report concluded that there is a “very real difficulty in protecting the weak and vulnerable in society”. Miss B Critchlow, Director of Nursing Midwifery and Professional Development, Noble’s Hospital, expressed a view held by many opponents of the legalisation of assisted dying that, “If you introduce such a legislation, you introduce risks, whereby vulnerable people feel that they have an obligation to society or to their family, or to whoever, to request either voluntary euthanasia or assisted suicide ” (HK oral evidence). Mr P Cusworth the Research Officer of LIFE UK told the HK Select Committee in oral evidence, “I would suggest that certain patients would feel pressurised to take euthanasia as an option, despite the fact that maybe their personal views would not coincide with that of euthanasia, but would feel, rightly or wrongly, pressurised into accepting euthanasia as a perceived solution”.
6.4.4.2 The two most commonly quoted groups of vulnerable people are the disabled and the elderly. 6.4.4.3 Disabled People 6.4.4.3.1 In a policy statement submitted to the Guernsey DWD Working Party the Disability Rights Commission (DRC) stated that it was not opposed to euthanasia and assisted suicide in principle for disabled people who could choose it. However they expressed concerns about the impact legislation would have in practice on disabled people. They felt that in the current
46 climate of discrimination and lack of palliative care and social support for disabled people they would have to disagree with a change in the legislation. It was the opinion of the DRC that a change in the law would lead to the reinforcement of public prejudice towards disabled people, the indirect and direct coercion of disabled people to seek assistance to die due to lack of social support to aid dignity and independent living, and fear of involuntary euthanasia for disabled people. They felt that institutional discrimination against disabled people would have to be eradicated before assisted dying could safely be legalised. Ms J Campbell, a DRC commissioner, believes that “The bill will not increase our autonomy, it will reduce our choice because we will begin to feel the pressure of a culture that would think that actually our choices should be limited” (HL oral evidence Q511).
6.4.4.3.2 In written evidence to the HK Select Committee Disability Awareness in Action (DAA) (Ref. No. 44) informed the committee that “legislation allowing assisted suicide, however tight the controls, inevitably reinforces negative attitudes on the quality of life of disabled people”.
6.4.4.4 Elderly People 6.4.4.4.1 In oral evidence to the HK Select Committee Ven. B Partington OBE, Archdeacon, speaking in a personal capacity, said “My pastoral experience shows that many elderly people already feel pressure. Very often, families would be horrified if they knew what some elderly people say to their clergy- people or other visitors, probably their medical teams, as well, but many feel the pressure that they are holding up something happening in life, that they are stopping their families perhaps having their house or their possessions and that they could benefit from them”. Many elderly people can feel a burden to their carers and family, Dr J Garland considered that “…talking about being a burden to others sometimes reflects reality, in the sense that a 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. It is a socially acceptable and rather British way of saying, ‘I am terribly worried about what other people are going through’, and then, with persuasion, they can be encouraged to begin to talk about their own concerns. Many patients do not begin by talking about their own concerns, because they feel it would be selfish, inappropriate and unpleasant to do so. So, they advance their concerns about others’ burden, as a way of sometimes getting round the fact that they too have got concerns, major concerns, and this is perhaps one of the most important factors why people often raise this issue of burden” (HK oral evidence).
6.4.4.4.2 Although there may be pressure on the elderly to consider assisted dying where it is legal, the empirical data does not support the claim that this occurs. The median age of patients dying through physician-assisted suicide in Oregon in 2004 and the patients that died under the Australian ROTI Act was 64 years and in the Netherlands it is rare in patients over the age of 80.
6.4.4.4.3 Whether or not patients experienced pressure in making treatment decisions was considered by Dr J Garland who told the HK Select Committee, “I have never experienced or witnessed anything that could be construed as pressure coming from either myself, my colleagues or any family members. One of the extensive areas of my practice was in working closely with family
47 members of people in terminal care situations, and we had family conferences, we saw people as individuals and nobody ever to my knowledge or my witness, suggested or exerted any hint of pressure.”
6.4.4.4.4 It is the view of some people that legislation for assisted dying could protect the vulnerable more so than they are at present. Ms D Annetts, representing the Voluntary Euthanasia Society (VES), told the HK Select Committee “the vulnerable are much more at risk in a system where there is no transparency and no regulation, and for me that is one of the most critical reasons why there should be a change in the law”.
6.4.5 Abuse of the Law: Covert & Involuntary Euthanasia 6.4.5.1 Covert Euthanasia 6.4.5.1.1 There are suggestions that euthanasia occurs regardless of the legality of it therefore legislation would control the practice of it. Alternatively, some believe that legislation would open the door to more illegal activity. Because the practice of euthanasia is illegal in the IOM and in the UK there are no official statistics regarding its frequency, all evidence for covert euthanasia is anecdotal and difficult to interpret. Some such evidence for covert euthanasia in the UK includes a study in 1994 which found that 38 out of 312 GP and hospital consultant respondents (12%) had complied with patients request to hasten death (Ward & Tate 1994). An article in the Sunday Times (15th November 1998) reported that out of 300 GPs one in seven had helped a patient to die at their request. However, references to diamorphine in the article suggest that there may be confusion with the double effect principle (Section 11). A more recent survey in 2004 conducted by Medix for VES (8 August 2004) found that out of 1,000 doctors, 454 (45%) believed there are circumstances where some health professionals in the UK currently assist in the suicide or voluntary euthanasia of their terminally ill patients. The Guernsey DWD Working Party Report concluded that “doctors are not simply killing their patients in a non-regulated fashion in Guernsey and such fanciful allegations cannot be used to support the argument for the introduction of euthanasia”. In the USA, a long term study of 988 terminally ill patients it was found that 0.4% of all decedents were reported to have died through euthanasia or physician-assisted suicide (Emanuel et al. 2000). This figure of 0.4% of all deaths occurring through euthanasia or physician- assisted suicide, and similar figures from other countries can be compared to the levels of deaths by assisted dying in countries where it is legislated for. Prior to legislation in Belgium 1.1% and 0.1% of deaths were as a result of euthanasia and physician-assisted suicide respectively. Similarly, in Australia prior to legislation 1.7% and 0.1% of deaths were due to euthanasia and physician-assisted suicide respectively (Deliens et al. 2000). In comparison to Oregon and the Netherlands (after legislation has been enacted) these figures are not significantly lower. In Oregon in 2004 0.125% of deaths were as a result of physician-assisted suicide, and in the Netherlands 1.69% of deaths were as a result of physician-assisted suicide and 2.97% were as a result of euthanasia. It can be seen that the figures are within the same range and so it appears that legislation may not necessarily increase the occurrence of assisted dying, but may serve to ensure it is regulated.
48 6.4.5.1.2 Ms D Annetts said that despite euthanasia or physician-assisted suicide being illegal, “That does not stop the fact that medical professionals do help patients die, and they do so at very great risk to themselves. So, irrespective of what the law may say, patients are asking for help to die and doctors are helping them to die, so what we have is a situation where there is a very real divide between what the law says and what is actually happening in practice, and that is a grave matter of concern” (HK oral evidence). 6.4.5.2 Involuntary Euthanasia There are fears that legalising euthanasia or assisted suicide would lead to an increase in involuntary euthanasia. Mr P Cusworth expressed this view in oral evidence to the HK Select Committee, “I would say that there is a very severe risk of a slippery slope taking place from, supposedly, voluntary euthanasia towards involuntary and non-voluntary forms of euthanasia as well”. Some members of the public have the impression that involuntary euthanasia occurs, “we have involuntary euthanasia going on in that respect, hopefully, not very much” (Mr P Bryden, speaking in a personal capacity, HK oral evidence). Again, there are no official statistics for frequency of involuntary euthanasia, however death certificate studies and physician interviews can provide some insight into this issue. In Flanders, Belgium according to a death certificate study, 3.2% of deaths were as a result of involuntary euthanasia (meaning euthanasia without the explicit request of the patient). In Australia the same method revealed that 3.5% of deaths resulted from involuntary euthanasia (Deliens et al. 2000). These figures can be compared to the figures for involuntary euthanasia in the Netherlands from between 1990 and 2001, which are 0.8% (1990) to 0.7% (1995 & 2001). It is apparent from these data that involuntary euthanasia is higher in countries that do not have legislation regarding assisted dying.
6.4.6 Changes in Society’s Views 6.4.6.1 Lord McColl, in written evidence to the HK Select Committee (Ref. No. 218) stated that “The law is a very powerful educator of the public conscience, when a practice becomes legal, accepted and widely practised in society; people cease to have strong feelings about it”. There are fears that if assisted dying were to be legalised then the views of society would change to become more accepting of the practice of assisted dying, this may result in the scope of the practice being widened.
6.4.6.2 The 1994 European Association for Palliative Care (EAPC) position paper refers to how the Nazi euthanasia programme started from individual requests and subsequently, was executed by ordinary doctors and nurses, who were later brought to the Nuremberg trials. The paper explains that “In 1920, Karl Binding, a doctor of jurisprudence and philosophy, and Alfred Hoche, a doctor of medicine, published a book in Germany on euthanasia. They did not intend the Nazi programmes that were a central focus at the Nuremberg trial. Nor, perhaps could these two eminent men have foreseen that second-order links between their ‘benevolent’ ideas on euthanasia and an emerging Nazi ideology. But those links were eventually forged and evidence at the Nuremberg trials established the influence they had on those who designed and implemented the Nazi programmes. The signs in our society of overt discrimination, latent racism, and utilitarian insensitivity to the vulnerable are too prominent for us to be naïve about proposals to
49 decriminalise euthanasia” (Roy, Rapin et al. 1994). In his written evidence Lord McColl quoted K Brandt speaking at the 1948 Nuremberg trials who said, “My underlying motive was the desire to help individuals who could not help themselves… such considerations should not be regarded as inhuman. Nor did I feel it in any way to be unethical or immoral”. Lord McColl felt that the developments described above required several potentially available factors, “Such progression requires only four accelerating factors: favourable public opinion, a handful of willing doctors, economic pressure and a law allowing it. In most western countries the first three ingredients are present already”.
6.4.6.3 Several studies have examined whether, amongst other things, physicians’ opinions on assisted dying have changed over the years since the practice has been legalised. It has been reported that 80% of 2641 Oregon physicians surveyed have not changed their view on the Oregon Death with Dignity Act (ODDA) since 1994. Among those whose views have changed, 13% have become more supportive and 7% have become less supportive of the Act (Ganzini et al. 2001). In the Netherlands, opposition of physicians to taking an active part in, or referring a patient for, euthanasia or physician- assisted suicide changed between 1990 and 2004. In 1990 4% of physicians surveyed said they would never perform euthanasia or physician-assisted suicide, or refer a patient to another physician who would be willing to carry out the patient’s wishes, in 1995 this figure was 3% and by 2001 it had dropped further to 1%. These data do suggest that physicians’ views towards assisted dying are becoming more permissive, however this change in views is not coupled with an increase in the frequency of assisted dying (Onwuteaka-Philipsen et al. 2003). 6.5 Doctor-Patient Relationship 6.5.1 The doctor-patient relationship should be based on trust and there are concerns that the legalisation of assisted dying would undermine that relationship. Conversely, some people believe that the legislation may lead to more open discussions of the dying process. Expressing a personal view, from the viewpoint of a patient, Mr P Bryden told the HK Select Committee, “I think that it is very difficult for a doctor to come along and say, ‘Yes, I believe in voluntary euthanasia’. I would be a little concerned myself, if I was suffering, possibly with a terminal illness, and I knew my doctor was a fan of voluntary euthanasia”. Miss B Critchlow stated that “It is very difficult to see a way of not undermining that trust and relationship, and, especially for those who have not yet really developed a trusting relationship with their doctor. To be able to develop one, takes time and I think there is a view that this might undermine that relationship” (HK oral evidence). Dr B Harris stated that the relationship between doctors and patients would change, “The role of doctors has always been to cure and care, but never to intentionally kill their patients. The legislation of voluntary euthanasia would fundamentally change the role of the doctor and the relationship of trust between the doctor and the patient” (HK oral evidence). With specific reference to elderly patients Prof. A Johnson felt that a change in the legislation “…would lose the confidence of the elderly patients particularly, who are not very sure, that are not very certain. They would start doubting, I think, the doctors’ caring and the relationship with particular patients” (HK oral evidence). In considering whether the doctor-patient relationship would be adversely affected, Ms D
50 Annetts stated, “There is absolutely no evidence to suggest this at all. Again, going back to Oregon, what has been found is that where doctors say, ‘I am not going to help you’, that has adversely affected the doctor-patient relationship, but not the other way around” (HK oral evidence).
6.5.2 In a survey of Guernsey medical professionals by the Guernsey DWD Working Party, medical professionals were asked, “Do you feel that legalising DAD (Doctor Assisted Death) in the Bailiwick would adversely affect the relationship between patient and the medical professions?” In response 56% of medical professionals felt that it would, 30% felt it would not and 14% did not know. 6.6 Complications in Performing Physician-Assisted Suicide 6.6.1 There is evidence that there can occasionally be clinical problems with performing physician-assisted suicide. Groenewoud and colleagues examined 649 cases of euthanasia and physician-assisted suicide in the Netherlands. They found that in 21 of the 114 cases in which the intention had been to provide assistance with suicide, ultimately the physician administered the lethal drug. This was due to the patient not dying as soon as expected, awaking from coma, having difficulty swallowing the oral medication, vomiting after swallowing it, or becoming unconscious before swallowing all of it. Generally, problems reported involved a longer than expected interval between the administration of the lethal drug and the patient’s death (Groenewoud et al. 2000). In Oregon complications with physician-assisted suicide in 2004 were reported in the DHS 7th Annual Report. During 2004 physicians reported that three patients had experienced complications; two patients vomited a small amount of the medication, one of whom died 15 minutes after ingestion and the other 45 minutes after ingestion. A third patient drank one-third of the prescribed medication and vomited, dying 31 hours later. A further three patients fell unconscious after having consumed half of the prescribed medication, with death occurring either thirty minutes, 2.5 hours or 7.5 hours after ingestion. One patient ingested the entire dose and died 19.5 hours after taking it.
6.6.2 These complications of physician-assisted suicide may have implications for legislation. For example, it is not clear at what point a physician’s assistance with suicide becomes euthanasia. A physician could pour an oral medication into the patient’s mouth because the patient is unable to administer it himself, would this become euthanasia? Prof. Baroness Finlay of Llandaff (2003) considered whether we “Should (we) be talking of euthanasia and physician-assisted suicide as two separate entities, or should we be talking of physician-assisted death only? In other words, is there any real difference in ethical terms or in intent if the patient takes the lethal dose of medicine by mouth or proffers a vein for it to be injected intravenously? I think not.” Related to this is the issue that if physician-assisted suicide is legalised but not euthanasia then some competent patients may not be able to end their own lives for purely physical reasons. Possibly the legislation should ensure that physicians have adequate knowledge of the technical performance of euthanasia and physician-assisted suicide Furthermore, it should be considered whether the physician’s presence is legally required when the act is carried out as assistance in case of complications could only be given if the physician were in attendance. The Royal Dutch Medical
51 Association states that the physician should be present when euthanasia or physician-assisted suicide is carried out. A physician who decides not to be present (for example, in response to a patient’s request) should make arrangements to be available if the prescribed drugs fail to have the intended effect (Groenewoud et al. 2000). 6.7 Recruitment It has been suggested that if assisted dying were to be legalised in the IOM, and not in the UK, there would be resulting problems with recruitment of medical professionals to the IOM. Miss B Critchlow felt that “It may make people think twice about actually coming to work here on the Island, if we had this legislation in place…it may give an indication of our values to people, either rightly or wrongly” (HK oral evidence). One respondent to the IOM Medical Society survey stated that they “would prefer to up and leave the Isle of Man and practice elsewhere than to be party to such a legislation”, aside from the fact that no medical professional would have to be party to the legislation if they did not wish to, this suggests that there are strong views regarding working in a jurisdiction where assisted dying is legal. In considering whether legalising assisted dying would attract medical professionals to the IOM Miss B Critchlow said, “I am not convinced that it would attract necessarily any doctors and nurses who specifically had a view on this, and therefore, wanted to come to the island, because the numbers would be so small” (HK oral evidence). Speaking to the HK Select Committee Prof. A Johnson referred to the employment situation in the UK, “We are short of doctors in the UK, particularly in the area of care of the elderly and areas which are seen as not so dramatic as acute services. We have great difficulty in recruiting people to that, and I think you would have a lot of people who would not want to come… The other thing to look at is the ethnic minority groups. I do not know whether this is an issue in the Isle of Man, but in the UK, about 20% of our doctors come from ethnic minority groups, and that is a very important issue. They are also particularly in the care of the elderly side of things and, of course, it is an absolute anathema to a Muslim to consider euthanasia. So, I think you would be blocking a whole ethnic group from coming and that might be construed, in a sense, as prejudice against them”. 6.8 Form of Legislation There are two different approaches to legislation regarding assisted dying. The general principles of the safeguards, operation and monitoring can be in the primary legislation, but the details established in the secondary legislation. Alternatively, much of the detail can be in the primary legislation. These two approaches have implications for the ease of modification. In the former case any modifications can be made more easily than in the latter, this has benefits in that it may be convenient. However, there is danger implicit in the ease of modifications. In terms of existing legislation, the Dutch legislation has much of its detail in the guidelines whereas the Belgian legislation has the details in the Act itself. The majority of legislation is improved and amended subsequent to enactment, however it is considered that with the issue of assisted dying this process would not be appropriate. This is due to the seriousness of the subject matter, if the legislation was incorrect or imperfect it could result in the unnecessary or wrongful death of a person. Ms D Annetts told the HK Select Committee, “I think that if you are going to go down this
52 route, you need to find a distinctive Isle of Man proposal, which is what Oregon did. Oregon is just a very small state in the US, and they have come up with something which is quite limited. But seems to work quite well for them.” 6.9 Who Should Make the Decision? The issue of who should make the final decision as to whether assisted dying is legalised was addressed by a poll commissioned from National Opinion Poll (NOP) research by Border TV. This poll consisted of a telephone survey of 500 Manx residents and a survey of MHKs, the question was asked, “If the Select Committee currently gathering evidence on the subject of assisted suicide were to recommend the law be changed, how do you think this issue should be decided?” In the public response 18% of those surveyed felt the decision should be made by politicians and 80% felt it should be decided by referendum (the remainder did not know how it should be decided). Of the MHKs surveyed 15 believed it should be decided by politicians, three believed it should be decided by referendum, one believed it should be decided by General Election, and the remainder did not know or refused to give an opinion. There would be difficulties in the decision being made by referendum, Richard Corkill MHK speaking on Right to Die (Border TV Production, broadcast 08/01/2004) said, “I think that there are so many questions surrounding the impact of this type of debate that it would be very difficult to, for any independent person to, frame a referendum questionnaire that everybody could have faith in”. Any decision taken by MHKs may justly reflect the views of the Manx public, Mr P Murcott, a lecturer in Manx Law said, “MHKs are far more acutely aware of what their constituents think, therefore, I think that they are far more likely to vote in accordance with what they perceive to be the views of the constituents than maybe would be the case in the UK” (Border TV Production, broadcast 08/01/2004). 6.10 Medical Professional Guidelines The medical professionals in the IOM are governed by the Professional Bodies in the UK. It has been suggested that, should the legislation in the IOM change, there would be difficulties with the practice of assisted dying neither being covered nor supported by the professional guidelines. The Attorney General told the HK Select Committee, “I think that it would create tremendous difficulties for the professionals in the medical world if they had to apply different standards in the Isle of Man than in the UK”. Miss B Critchlow spoke to Nursing and Midwifery Advisory Council (NMAC) in the UK regarding the a change in legislation in the IOM and told the HK Select Committee, “It is not a flexible organisation really. It provides a code of conduct across the board and they said unless UK legislation was to change, this is not on their agenda. I asked what if Isle of Man legislation was to change and they said, “Well effectively you are governed by UK legislation. Nurses and Midwives are governed by UK legislation and we could not see a way around that”. However, she conceded that if the law was to change in the IOM then so must the guidelines for the medical professionals, “The NMC (Nursing and Midwifery Council) is a very big standing body and it is a statutory body and to negotiate on behalf of 900 nurses with them would be a difficult task. However, I can see that if we had legislation here, those processes would have to be gone through, if nurses were willing to practice assisted suicide or voluntary euthanasia”. Ms D Annetts felt that changing the
53 professional guidelines in the case of a change in legislation in the IOM would not be a problem, “I think if there is a change in the legislation, the professional guidelines will change as well. That will just happen, and it does actually say in the Joffe Bill that this will not prejudice your professional standing within your professional body. So, in a sense, what the Bill does is gives them a exemption provision in their professional guidelines” (HK oral evidence). The Clause that Ms D Annetts refers to is Clause 10 of the ADTI Bill which, inter alia, specifies that a physician or a member of a health care team who, acting in good faith, assists a qualifying patient to die or attempts to do so, in accordance with the requirements of the Act shall not be deemed to be in breach of any professional oath or affirmation.
6.11 Reciprocal Agreement The term reciprocal agreement refers to the arrangement between different jurisdictions allowing for the provision of health services to patients who are entitled to health services in each jurisdiction on a reciprocal basis. There is such an agreement between the IOM Department of Health and Social Security and the UK Department of Health. Concerns have been expressed that, due to the reciprocal agreement between the IOM and UK, if assisted dying was offered in the IOM, there would be an obligation to offer to UK residents. However, the scope of the arrangement is limited to the provision of health care provided as part of the health service in both jurisdictions and excludes the provision of some specialist services and private treatment. Therefore, if assisted dying were to be legalised in the IOM and the service was offered as a service provided within the private sector, then it would not be within the scope of the above arrangements. Nonetheless, if assisted dying was offered in the IOM within the IOM National Health Service then the practice may still not be subject to the ‘reciprocal agreement’ unless both parties agreed to its inclusion. Consequently, if assisted dying were to be legalised in the IOM there would not be problems in restricting its practice to Manx residents.
6.12 Royal Assent Legislation in the IOM requires Royal Assent. According to the Attorney General, if legislation is passed in the IOM regarding assisted dying and no such legislation were in place in the UK, there may be problems with the granting of Royal Assent. The Attorney General went on to explain to the HK Select Committee the procedures taken to avoid conflict in the granting of Royal Assent, “The practice… is that we always try to avoid such a conflict by having early consultation. It would now be with the Lord Chancellor’s Department (LCD). In other words, my chambers, having received drafting instruction, would make early contact with the LCD and enquire whether there is likely to be a problem with Royal Assent”. The Guernsey DWD Working Party recognised that although the decision of a change in the law regarding euthanasia or physician-assisted suicide ultimately lies with the States of Guernsey, it is subject to Royal Sanction. The minority report of the Guernsey report recognised that acting ahead of the UK on euthanasia and physician-assisted suicide may raise difficulties for Guernsey. However, in Scotland the issue of euthanasia is devolved to the Scottish parliament, making it a matter for the Scottish parliament to decide independently. As the
54 subject of euthanasia and assisted suicide is valid, in that it is paralleled in other jurisdictions, it is considered by some to be an issue for the House of Keys to resolve as a legitimate domestic matter. 6.13 Discussion 6.13.1 It has been seen in this section that the individuals who seek assisted dying do so for a variety of reasons, these reasons tend to be psychological or existential reasons rather than as a direct result of physical symptoms. The application of assisted dying, if it were legalised in the IOM, may be as low as one death a year (if the Oregon model is applied). It has been debated whether the needs of few can justify a change in the law, however it was stated that the law is there for the individual as much as for the masses.
6.13.2 The concept of the ‘slippery slope’, and whether such a phenomenon exists, was examined in detail. The Guernsey DWD Working Party majority report concluded that the ‘slippery slope’ argument, “although denied by those in favour of euthanasia is compelling”. This concept encompasses five categories, each of which was examined in turn. The first of these is incremental extension of the law by amendments to the Act. There are fears that, once enacted the scope of any legislation will be gradually extended to encompass more groups of qualifying patients. The second category is concerns that there will be an elastic interpretation of the law and the numbers of those eligible for assisted dying under the Act would increase. However, empirical evidence from jurisdictions that have legalised assisted dying of some form demonstrates that these fears have no foundation. There are fears that vulnerable groups such as the elderly and the disabled would feel pressure to consider or request assisted dying if it were legal. Nonetheless, data from the Netherlands and Oregon suggest that it tends not to be the elderly that are requesting or receiving physician-assisted suicide or euthanasia. The fourth category associated with the ‘slippery slope’ argument is that there will be abuse of the law. Some consider that if euthanasia were occurring illegally as has been suggested, that legalising it would result in the more widespread practice of it. Alternatively, legislation for assisted dying may result in the regulation of a practice that is occurring without regulation at present. Evidence from Australia and Belgium (prior to legislation being passed) suggest that levels of assisted dying were similar to jurisdictions where assisted dying was legislated for. Therefore, legislation would not increase the frequency of assisted dying, but ensure its proper regulation. Abuse of the law may also occur in the form of involuntary euthanasia. It has been suggested that if voluntary euthanasia or assisted suicide were legalised then the practice of involuntary euthanasia would increase. However, although evidence suggests that involuntary euthanasia occurs in the Netherlands, it occurs around three times less frequently than it does in jurisdictions that do not have legislation regarding assisted dying. The final category in the ‘slippery slope’ argument in the argument that society’s views will change as a result of a change in the law and society will become more permissive to the concept of euthanasia or assisted suicide.
55 7. Opinions of the Health Care Sector 7.1 Introduction It is essential to consider the opinions of the health care sector regarding euthanasia and physician-assisted suicide. The views of health care professionals are often given more emphasis in the debate on assisted dying, as these individuals tend to be well informed and have at least some experience of end-of-life situations. The degree of support for euthanasia or physician-assisted suicide from the health care sector must be assessed, not only for moral considerations, but also for practical ones. There are suggestions that even if legislation were enacted allowing euthanasia and physician-assisted suicide, it would be unfeasible because of the number of health care professionals that would be willing to practice it; this issue is examined here.
7.2 BMA Policy At the most recent annual meeting of the British Medical Association (BMA) in 2005 the BMA members voted to withdraw their long-standing opposition to assisted dying legislation. This changed their position on assisted dying from one of opposition to one of neutrality. At the annual meeting the 175 voting members present (not counting abstentions) first voted on the option of positively supporting assisted dying legislation. This proposal was defeated by a narrower margin than expected with 58% against and 42% in favour of the BMA supporting assisted dying legislation. The members present then voted by a small margin (53% in favour and 47% against) in favour of withdrawing the BMA’s opposition to assisted dying legislation. The new BMA policy was then established as follows, “That this Meeting believes that the question of the criminal law in relation to assisted dying is primarily a matter for society and for Parliament. The BMA should not oppose legislation which alters the criminal law but should press for robust safeguards both for patients and for doctors who do not wish to be involved in such procedures.”
7.3 RCGP Position Statement In September 2005 the Royal College of General Practitioners (RCGP) declared their position statement to be: “The RCGP believes that with current improvements in palliative care, good clinical care can be provided within existing legislation and that patients can die with dignity. A change in legislation is not needed.” However, the stance of the RCGP has altered over the last few years. In October 2004 the RCGP withdrew it opposition to assisted dying and took a stance of neutrality. At the time it was emphasised that the neutrality of the RCGP should not be interpreted as support for assisted dying, but rather they considered it to be a matter for society to decide.
7.4 RCN Position The Royal College of Nursing (RCN) has stated its position on assisted dying as being in opposition to its legalisation. A RCN congress item on euthanasia in 2005 produced an evenly balanced debate in terms of those in favour and
56 those opposed to euthanasia. The issue was not put to a vote. As a result of the debate the RCN initiated actions aimed at informing members, and encouraged members to explore, issues regarding assisted dying. 7.5 Isle of Man Medical Society Opinion 7.5.1 In May 2004 the IOM Medical Society surveyed its members as to their views on different issues associated with the proposed Bill. Members of the Medical Society consist of working and retired practitioners. A questionnaire was issued to the 148 members of the society and 85 completed this questionnaire (response rate of 57%). The questionnaire contained seven statements and respondents were asked to state whether they strongly agreed, agreed, disagreed, strongly disagreed, or had no view on each statement. These seven statements and the response of the IOM Medical Society members, in terms of percentage support for expressions of agreement or disagreement, are detailed below.
7.5.2 Statement 1: “The British Medical Association (BMA) has consistently opposed voluntary euthanasia and physician-assisted suicide. This view has been repeatedly confirmed by annual meetings. In 2000, the BMA members held a two day conference to promote the development of consensus on physician-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 (from BMA statement on “end of life issues” – August 2002). I agree with the views of the BMA.” [However, note section 7.2 regarding the change in policy of the BMA in 2005]:
Strongly agree (53%) Agree (22%) Disagree (14%) Strongly disagree (5%) No view (6%)
Figure 2 Response of the IOM Medical Society to Statement 1 regarding views of BMA.
57 7.5.3 Statement 2: “On the basis of my medical practice (in the Isle of Man), there is no real need for a change in the law to allow voluntary euthanasia to take place to deal with unresolved pain or other suffering associated with terminal or serious and progressive physical illness”
Strongly agree (52%) Agree (22%) Disagree (12%)
Strongly disagree (5%)
No view (9%)
Figure 3 Response of the IOM Medical Society to Statement 2 regarding the need for a change in law.
7.5.4 Statement 3: “It would not be straightforward in routine medical practice to decide who had a “terminal or a serious and progressive physical illness” and who did not.”
Strongly agree (33%) Agree (34%) Disagree (25%) Strongly disagree (1%) No view (7%)
Figure 4 Response of the IOM Medical Society to Statement 3 regarding diagnosis issues.
58 7.5.5 Statement 4: “If the IOM Government introduced the proposed legislation I would not be prepared to take an active part in providing euthanasia myself.”
Strongly agree (59%)
Agree (19%)
Disagree (13%) Strongly disagree (4%) No view (5%)
Figure 5 Response of the IOM Medical Society to Statement 4 regarding taking an active part in providing euthanasia.
7.5.6 Statement 5: “If the IOM Government introduced the proposed legislation I would not be prepared to assess patients for suitability for euthanasia.”
Strongly agree (62%) Agree (15%) Disagree (15%) Strongly disagree (3%)
No view (5%)
Figure 6 Response of the IOM Medical Society to Statement 5 regarding assessment of patients for suitability for euthanasia.
59 7.5.7 Statement 6: “If the IOM Government introduced the proposed legislation I would not be prepared to refer patients on to other doctors who would assess for and/or provide euthanasia.”
Strongly agree (36%) Agree (16%) Disagree (27%) Strongly disagree (8%) No view (13%)
Figure 7 Response of the IOM Medical Society to Statement 6 regarding referral of patient for assessment for euthanasia.
7.5.8 Statement 7: “In the last 5 years of my medical practice, I have seriously been asked to provide euthanasia.”
Never (70%) 1 to 2 times (18%)
2 to 5 times (4%)
6 to 10 times (7%) more than 10 times (1%)
Figure 8 Response of the IOM Medical Society to Statement 7 regarding level of demand for euthanasia and physician-assisted suicide.
7.5.9 Several members of the society also submitted comments on the questionnaires. These comments ranged from statements of opinions to comments on practical aspects of the proposed Bill. A selection of these comments are quoted below, a copy of all the comments can be found at Appendix 7. There was opposition and support for the proposed Bill for ethical reasons; “This is outside all ethical and moral beliefs that are central to my practice of medicine. I would not be prepared to take part in euthanasia or physician-assisted suicide in any way whatsoever” and “Everyone has a right to die at the time of their own choosing”. However, many Manx doctors
60 raised practical issues with respect to the proposed Bill; “My objections to this proposal are practical rather than ethical or moral”. These issues included at what stage in the illness euthanasia would be appropriate, concerns with abuse and extension of the law, the provision for doctors who object to participating in matters relating to euthanasia, the conditions under which euthanasia or physician-assisted suicide could occur, and the process of the patient making an informed decision. 7.6 Isle of Man NMAC Opinion 7.6.1 Miss B Critchlow, Director of Nursing Midwifery and Professional Development, Noble’s Hospital and the Chief Nurse Advisor representing the Nursing and Midwifery Advisory Council (NMAC) in the IOM, sought the opinions of nurses, midwives and health visitors in the IOM. NMAC is the Council responsible for leading and developing the nursing profession in the IOM. Nurses, midwives and health visitors in the IOM were consulted and requested to forward their views and/or comments either directly to the HK Select Committee or to the Chief Nurse Advisor representing NMAC. A total of 38 nurses, midwives and health visitors responded to NMAC directly; 37 opposed and 1 supported the introduction of the proposed Bill. There are 900 nurses, midwives and health visitors in the IOM; therefore the response of 38 corresponds to a response rate of 4.2%. The comments expressed in opposition of the proposed Bill covered a range of issues including the risk to society, the possibility of the search for improved therapies and palliative care practices being compromised, the difficulty of legislating for all situations related to assisted dying and the difficulty of setting safe bounds to euthanasia or physician-assisted suicide. Respondents commented that euthanasia and physician-assisted suicide create such personal and professional ethical dilemmas that they would find it extremely difficult to assist, although figures detailing the number that would actually be willing to assist were not provided. The single individual that expressed support for the proposed Bill was of the opinion that individuals make their own choices throughout their lives and should be at liberty to choose their time to die. NMAC (IOM) further expressed the view that “In the event of the IOM passing legislation in advance of the UK, nurses and midwives may be placed in an invidious position. As a profession, their code of practice is laid down in UK legislation. It is unlikely that changes in the IOM legislation would influence or change the Nursing and Midwifery Council’s (NMC) position, regulation of the profession is not flexible enough to allow for specific circumstances unique to the Island."
7.6.2 The RCN has expressed opposition to the practice of euthanasia and assisted suicide. It has stated, “The RCN is against euthanasia and assisted suicide. Euthanasia is illegal and the RCN do not condone it. The RCN believes that the practice of euthanasia is contrary to public interests, nursing and medical ethical principles as well as patients’ civil rights” and “The RCN is opposed to the introduction of any legislation which would place the responsibility on nurses and other medical staff to respond to a demand for termination of life from any patient’s suffering from intractable, incurable or terminal illness.” The NMC (UK) is the regulatory nursing body; all nurses, midwives and health visitors are guided and regulated by the Code of Professional Conduct laid down by the NMC. When NMC (UK) was asked for their position on euthanasia and physician-assisted suicide they stated,
61 “NMC has not yet discussed the issue of assisted suicide or euthanasia, both are illegal and therefore discussion is still in the legal arena rather than the professional arena.” 7.7 Medical Opinions in Guernsey The Guernsey Death with Dignity (DWD) Working Party conducted a survey of medical and nursing professions in Guernsey in February and March 2004. A copy of the omnibus survey was sent to all practicing doctors and a representative and random sample of nurses in Guernsey. A total of 329 surveys were sent and 177 were returned, corresponding to a response rate of 54%. In response to the question, do you feel there is a need to change the law in Guernsey to facilitate, for competent persons, voluntary euthanasia? 62% of medical professionals (79% of doctors and 51% of nurses) indicated that they felt that there was no need to change the law, 26% of medical professionals (11% of doctors and 36% of nurses) felt that there was a need to change the law. In response to the question, do you feel there is a need to change the law in Guernsey to facilitate, for competent persons, physician-assisted suicide? 58% of medical professionals (75% of doctors and 47% of nurses) indicated that they felt that there was no need to change the law, 28% of medical professionals (14% of doctors and 38% of nurses) felt that there was a need to change the law. 7.8 Medical Opinions in the UK Numerous surveys have been conducted concerning the opinions of the medical profession regarding euthanasia and physician-assisted suicide in the UK. A selection of these are detailed in Table 3, page 59. 7.9 Comparisons between Jurisdictions 7.9.1 Comparisons can be drawn between the responses of medical professionals in the IOM and Guernsey. The Guernsey survey included responses from 71 doctors (medical specialist group members, GPs or state employed consultants) and the IOM survey included 60 working doctors. The same question of whether it was considered that there was a need for a change in law, in the respective jurisdictions, to allow voluntary euthanasia was posed to the respondents. In both the IOM and Guernsey eight doctors believed that there was a need for a change in the law, with 56 and 49 doctors in Guernsey and the IOM respectively not believing that there is a need for a change in the law.
7.9.2 The number of doctors who would not be prepared to participate in different aspects related to euthanasia or physician-assisted suicide is important for the consideration as to whether either practice is feasible or not in the IOM. In terms of assessment of patients who request euthanasia, 15 (18% of respondents) Manx doctors stated that they would be willing to take part in assessment, with only 6 of these currently working. An Association for Palliative Medicine (APM) survey of its members (see Table 3) reported that 72% stated that they would not be prepared to participate in assessment for euthanasia or physician-assisted suicide. In comparison, 77% of Manx doctors surveyed would not be willing to participate in assessment.
62 7.9.3 In terms of the opinions of the nursing profession, the members of NMAC in the IOM who expressed their view were collectively, bar one member, against a change in legislation. This is in contrast to the opinions of nurses in Guernsey and the UK. In Guernsey the nurses perceived more need than doctors for both euthanasia and Year Target Number Results Source Group 1987 GPs 301 If the law was changed along the NOP lines of the ADTI Bill 53% would not survey for carry out euthanasia on patient, 35% VES would consider doing so and 10% might consider doing so 1992 GPs & 307 46% (51% GP, 40% consultants) Ward and to Hospital would be prepared to consider Tate, 1994. 1993 Consultant practising euthanasia if asked by a s competent patient if it were legal, 32% would not 1995 GPs & 2150 44% supported legal reform to allow Doctor Hospital euthanasia, 53% opposed. 43% Maga-zine. specialists would consider practicing euthanasia if it became legal 1996 GPs 750 46% supported and 44% rejected BMA legal reform to allow euthanasia. News review 1996 Doctors & 1000 65% were in favour of a change in MacLean pharmacis the law to allow physician-assisted 1996 ts suicide. 53% would be willing to assist in physician-assisted suicide 1998 Senior 322 40% supported euthanasia & Shah et al. Psychia- physician-assisted suicide 1998 trists 2003 Doctors - 55% thought that physician-assisted Medix-UK suicide should be permitted for people with terminal illnesses & uncontrollable physical suffering 2003 Nurses 1,173 59% thought that the UK law should Nursing be changed to allow health Times professionals to help the terminally ill end their lives - APM - 72% would not be prepared to Quoted in members participate in assessment for HLReport euthanasia or physician-assisted (para 116) suicide 2003 Doctors 986 61% believed legislation should not doctors. be changed, 76% would refuse to net.uk perform euthanasia or assist in survey for suicide, 56% believed it would be Right to impossible to set safe boundaries to Life. legislation
63 Table 3 Table of a selection of surveys conducted between 1987 and 2003 concerning the opinions of medical professionals on euthanasia and physician-assisted suicide. physician-assisted suicide. 11% and 14% of doctors supported euthanasia and physician-assisted suicide respectively, and 26% and 28% of nurses supported euthanasia and physician-assisted suicide respectively. In the UK a survey in Nursing Times (see Table 3) stated that 59% of nurses felt that the UK law should be changed to allow euthanasia or physician-assisted suicide. This disparity in views is likely to be an artefact of the poor response rate to the NMAC (IOM) call for opinions and the fact that no formal survey was conducted. In response to questions regarding the poor response rate Miss B Critchlow told the HK Select Committee, “I think it is a difficult issue for nurses to consider and it is one that they are not considering in their professional arena at the moment. It may be due to general apathy…or it may be that it is a professional and ethical dilemma, that they really do not want to address at the moment…I do not think that they believe it will become a reality.” 7.10 Discussion 7.10.1 The policies and position statements of three main UK medical organisations have been outlined. It can be seen that the issue of assisted dying is at the forefront of debate in these organisations as policies are frequently discussed and updated. Whilst currently the BMA is the only organisation considered that has a position of neutrality towards assisted dying, the other organisations have either formerly held a position of neutrality (RCGP) or both opposition and support have been equally represented in recent debate (RCN).
7.10.2 The difficulty in comparisons between different surveys must be considered. Few of the surveys have common designs and there are differences in definitions of euthanasia and physician-assisted suicide. The majority of surveys employ relatively simple and direct questions without any explanations of context or of wider implications, some surveys may also use more emotive language which may affect the answers given. Nonetheless, basic comparisons can be drawn between surveys, provided that the limitations of such exercises are kept in mind.
7.10.3 The majority of the opinions of Manx health care professionals were opposed to the legalisation of euthanasia or physician-assisted suicide. The reasons given for this opposition were both ethical and practical. Where reasons were given for support for the proposed Bill, these were centred on the argument of autonomy. There are divided views as to whether there is a need for a change in the legislation in the IOM. In the IOM Medical Society survey 16 doctors disagreed with the BMA statement but 14 believed there is a need for euthanasia or physician-assisted suicide in the IOM. Therefore, two doctors who did not support the BMA views considered that there is no need for a change in legislation in the IOM, suggesting that their views are focussed on the need in the IOM itself rather than ethical or practical objections as could be the case in other individual’s views. This indicates that there is some doubt as to whether the IOM specifically has need for a change in legislation regardless of the ethical, moral or practical arguments against euthanasia or physician-assisted suicide. The medical profession in the IOM
64 seemed to perceive a similar need or otherwise for euthanasia as the medical profession in Guernsey. According to the IOM Medical Society survey there are 7 working doctors in the IOM that would be willing to take an active role in providing euthanasia. 8. Public Opinions 8.1 Introduction The issues of euthanasia and assisted suicide are highly sensitive and complex and it is for this reason that the views of experts were sought on the subjects. However, they are issues that would affect all of society and therefore it is essential also to seek the views of the general public. 8.2 Manx Public Opinion 8.2.1 The HK Select Committee issued an invitation to the general public for written evidence with regard to the proposed Bill. The advertisement inviting evidence was published in the IOM Newspapers and the Church Leader, and broadcast on Manx Radio and the Internet (a copy of the Government Notice can be seen at Appendix 4). The invitation was issued on the 22nd May and it was specified that submissions should be undersigned no later than the 30th September 2003. All submissions were read in full, replied to by a standard letter of receipt (a copy of this letter can be seen at Appendix 8) and copied to all members of the HK Select Committee; all committee members also received a summary of the written evidence.
8.2.2 Submissions The Committee received in total 223 submissions, which consisted of 208 letters, 5 emails, 8 reports/booklets, and the results of voting within two organisations (submissions with multiple signatures were counted as a single submission). The majority of submissions were from individuals expressing their personal views (199, 89.2%) with the remaining submissions divided equally between religious and non-religious organisations (12, 5.4% in each case). The source of submissions was not restricted to solely the IOM, 29 (13%) submissions originated from the UK, a submission was received each from Scotland, Ireland and Australia (0.4% in each case) and 2 submissions were anonymous (1%). The remaining 189 submissions originated from the IOM (84.8%). Appendix 5 details the names, reference numbers address, and organisation if applicable of all submissions. A socio-economic analysis of the respondents was not possible as information regarding this was not requested. However, several respondents did include personal information. Of the respondents that indicated their age five respondents were 20-29 years old, four stated they were ‘middle-aged’ and sixteen were elderly. The majority of respondents did not mention their occupation (152, 68.2%), however, 37 were in the medical or health care profession, 12 were of religious occupation, 4 were involved in education and 2 were students.
8.2.3 Public Views 8.2.3.1 In terms of opinions concerning the proposed Bill, 189 submissions were opposed to the proposed Bill, 30 were in support, 3 did not state their position but were submissions of evidence and 1 individual submission was undecided as to whether legislation should be passed. These opinions can be
65 seen in Figure 9 (page 62). It is extremely difficult to draw conclusions as to the view of the general public using results of this kind. Nonetheless, it can be stated that the majority of people who were prepared to take the time to make a submission to the HK Select Committee were against the concept of the proposed Bill.
8.2.3.2 The majority of respondents went on to specify the reasons for the opinion they hold; only five respondents did not do this. A wide variety of subjects and concerns were raised in the submissions, and many respondents mentioned similar issues or shared similar concerns. This allowed an analysis of the issues that were apparently important to members of the Manx public. The frequency of introduction of different issues was taken as a proxy for the importance of the issue to the general public.
Opposed (84.4%) Support (13.4%) Not stated (1.8%)
Undecided (0.4%)
Figure 9 Opinions expressed by the general public with respect to the proposed HK Bill. 8.2.3.3 Religion 8.2.3.3.1 Religion was the most discussed topic among submissions, with 49% of respondents using religious evidence in both support and opposition of the proposed Bill. A frequent assertion was that “Life is a gift from God and only God has the right to take life as well as give it” (Mrs L Jones, Ref. No. 181) and the sixth commandment, “Thou shall not kill” (Mrs T Arrowsmith, Ref. No. 208), was also often quoted. The broader scope and importance of this commandment was also commented on by Rev K Corkish who wrote, “I cannot claim that the Biblical command not to kill, is solely a Judeo Christian command, as it is the bedrock of other major world religions” (Ref. No. 118). Concern was expressed with reference to the society or community of the IOM with views such as; “This [euthanasia] is indecent in a religious community” (Mrs H Quirk, Ref. No. 72) and “We believe that any such law…would amount to a rejection of the long Christian tradition of the Isle of Man and it’s people” (Mr and Mrs Lardner, Ref. No. 90).
8.2.3.3.2 Although the majority (89%) of religious reasons mentioned were in opposition of a voluntary euthanasia Bill, religion was also used to give support to the proposed Bill. One respondent wrote, “Christ was the embodiment of heavenly loving, compassions, mercy and forgiveness, who relieved suffering by curing the sick. Would he wish for suffering to be endured?” (Mr R Field, Ref. No. 2). Several respondents believed that the
66 value of religious arguments in the debate surrounding voluntary euthanasia and physician-assisted suicide is negligible. “The religious argument has little impact on the euthanasia debate” (Ms D Whitefield, Ref. No. 45) and “Religious arguments against a change of law are not sustainable. Matters of belief in this area are specific to each and every individual. Whilst respecting the rights of religions to instruct and advise their own followers in their respective moral ethics and theology, such ethics cannot be reasonably imposed upon those who do not adhere to them.” (Mr M Kermode, Mec Vannin, Ref. No. 217). It can be seen in Figure 10 (page 64), that the religious arguments were used in both support and opposition of the proposed Bill.
Opposed: quoting religion (44%) Opposed: not quoting religion (41%) Support: not quoting religion (8%)
Support: quoting religion (5%)
Figure 10 How religion was used in the arguments of the Manx public both for and against the proposed HK Bill. 8.2.3.4 Sanctity of Life There were conflicting views over the degree of importance of the sanctity of life in the argument for and against the proposed Bill. 12% of submissions referred to the sanctity of life and those in opposition of the Bill wrote, “the responsibility of government is to protect the sanctity of human life” and that “the sanctity of life should take precedence over the quality of life” (Mrs T Burrows, Ref. No. 50). Those in support of the Bill wrote, “I consider life to be neither ‘a gift from God’ nor ‘sacred’” and one anonymous submission stated that pressure groups “should not interfere with those who do not believe… in the sanctity of life”. 8.2.3.5 The Value of Life Some individuals felt that the proposed Bill would result in some lives being considered of a lower value than others (10% of submissions). Comments included, “Is it fair for there to exist a law which advocates a level of 'quality of life'?” (Ms D Whitefield, Ref. No. 45), “No one human being has the right to play God in deciding if one life is of more value than another.” (Mr and Mrs Karalius, Ref. No. 32) and “Life is worth an infinite amount no matter how disabled a person is or is likely to become” (Ms G Gerhardi, Ref. No. 43).
67 8.2.3.6 Autonomy & its Limits It has been seen that the concept of autonomy is one of the main ethical arguments supporting assisted dying. Perhaps surprisingly, it was only mentioned, whether stated specifically or the concept illustrated, in 18% of the submissions from the Manx general public. The concept was illustrated with statements like; “I feel that it is my right, when the time comes and I am suffering, in pain, feeling undignified and helpless, to take my own life” (Mrs J Kneale, Ref. No. 57), “This is my body, my life and mine alone” (Ms E Harper, Ref. No. 86), “The government must act by changing the law to allow terminally ill adults the option of choosing medical help to die…under proper safeguards” (Mr J Kelly, Ref. No. 126) and “I feel everyone should be given a choice to end their life if it becomes unbearable” (Miss J Rock, Ref. No. 9). Whilst the importance of autonomy was recognised, some respondents drew attention to the fact that individual autonomy should have limits in society. An example of these views includes; “The choice of an individual to die has a wider influence than just upon himself” (Mr B Jones, Ref. No. 182), “The question is, is it right to extend the autonomy of some patients if in the process it puts others at risk?” (Prof. T S Maughan, Ref. No. 120) and “We seek to meet the needs of the individual (which I understand is what has prompted this proposed legislation) but not when it endangers the very foundation of that society” (Mr G Jensen, Ref. No. 49). 8.2.3.7 Hospice and Palliative Care 8.2.3.7.1 Hospice and palliative care is obviously an important issue for the Manx public with 47% of submissions raising the subject. References were made to Hospice Care and general medical care in the IOM; all such references were highly favourable. “Our Hospice Care is the outstanding and most treasured example of how to go about it” (Mrs T Burrows, Ref. No. 50) and one respondent’s family was said to have “…received excellent support and care from the medical professionals on the Island” (Miss E J Payne, Ref. No. 146). Concern was expressed about the effects that the proposed Bill would have on the hospice movement. Several respondents believed that “If euthanasia were legalised this would be detrimental to the hospice movement. It would mean less research into pain relief would be carried out” (Mr S J Baker, Ref. No. 55). Conversely, other respondents were of the opinion that “this legislation would in no way undermine the invaluable work of the hospice” (Mr D Drower, Ref. No. 128).
8.2.3.7.2 Both support and opposition for the proposed Bill came from the ability, or otherwise, of palliative medicine to relieve suffering or pain in the case of terminal illness. Those in opposition of the Bill emphasised the ability of palliative medicine to relieve suffering for example, “Palliative medicine has in recent years shown that virtually all unpleasant symptoms experienced in the process of terminal illness can be either relieved or substantially alleviated by techniques already available” (Mrs S J Lalor-Smith, Ref. No. 94). Those in support of the proposed Bill tended to recognise that “There are occasions when palliative care reaches its limits” (IOM Freethinkers, Ref. No. 104) and that “It is a fact that in some cases chronic pain cannot unfortunately always be controlled effectively or eliminated” (Ms C Milner, Ref. No. 117).
68 8.2.3.8 Pressure on Vulnerable Groups The risk of pressure on vulnerable groups to consider voluntary euthanasia or physician-assisted suicide when they otherwise would not have done if legislation were not passed was raised in 36% of submissions. Within these submissions, either general concern was expressed or specific groups were mentioned. It appears that the focus of concern is the elderly with 59% of the respondents expressing concern in this category specifying the elderly. Respondents were concerned that the sick or terminally ill would be pressurised into considering euthanasia or physician-assisted suicide either when they otherwise would not have done, or against their will (31% of all respondents). Depression was recognised as influencing decision-making and as being a possible reason that the terminally ill would seek euthanasia or physician-assisted suicide if it were available, 21% of submissions in this category quoted depression as a concern. Concern for pressure on both the mentally and physically disabled was expressed. Several respondents were of the opinion that if euthanasia or physician-assisted suicide were available certain vulnerable individuals would feel financial pressure, as a result of health care costs, to request assistance with dying.
8.2.3.9 Personal Experience 24% of the submissions drew on personal experiences in their response such as experience in the medical field, as a carer or as having a serious illness themselves. Examples of experience in the medical field were of physicians stating if they have ever been asked for euthanasia or if they believe there is a demand for it (section 8.2.3.17). For example, “My ten years of experience with elderly patients leads me to conclude that even when multiple and serious illnesses or disabilities/handicaps are present in one person, the vast majority of elderly want to continue living” (Mr J Masson, Ref. No. 41). The majority of personal experience referred to was drawn from either individual’s experience of illness or caring for others (friends or family) during their illness, with 19% of all submissions quoting personal experience of this kind. Examples of such personal experience were; “My health is not much good but should it get much worse I haven’t the slightest desire for my life to be artificially prolonged causing my children endless trouble and concern, all to satisfy a legal nicety and convention” (Mr P Philips, Ref. No. 62), and “As a severely disabled person I was aware my life would be vulnerable to being cut short if I needed life sustaining care for any length of time. I am convinced that my life would be even more vulnerable if euthanasia were ever legalised” (Ms G Gerhardi, Ref. No. 43).
8.2.3.10 References to Jurisdictions with Legalised Assisted Dying The majority of submissions that referred to jurisdictions with either legalised euthanasia or physician-assisted suicide or both (20% of all submissions) were using the reference to illustrate their opposition to the proposed Bill (43 of the 45 submissions referring to this subject were in opposition). Jurisdictions specifically referred to were the Netherlands, referred to by 40 submissions with the remainder referring to Oregon, Switzerland, Belgium and Australia (Northern Territory). Specific concerns with certain jurisdictions were
69 mentioned in some cases and these were; the occurrence of involuntary euthanasia, the effect on the hospice movement and palliative care, the effectiveness of regulation of the practice, concerns for the effects on the elderly such as fear of entering a hospice, and the effect on public attitudes.
8.2.3.11 Fear of Involuntary Euthanasia There were fears expressed that the legalisation of assisted dying could lead to involuntary euthanasia. These fears were expressed by 35 (16%) respondents and 19 of these specifically mentioned the situation in the Netherlands.
8.2.3.12 Safeguards & Conditions 15% of respondents mentioned the subject of the conditions under which assisted dying might occur and the necessary safeguards to prevent abuse. Some respondents set out specific conditions under which they would be prepared to support the legalisation of voluntary euthanasia. Many respondents specified similar conditions such as the individual should be an adult, be competent and have made a considered and persistent request. The individual should be terminally ill, suffering from a progressive and serious illness or in one case “any disabling ailment”. Words such as “incurable”, “unbearable” and “intolerable” were often used. Some considered that the request should be valid whether the patient was in pain or not. Many respondents wrote that residency should be an issue to be considered and residency times of a minimum of 2 years were suggested, see section 8.2.3.13 below. 8% of all respondents set out specific conditions and safeguards and expressions of support were often conditional on effective safeguards being in place. There was much concern expressed over how effective safeguards could actually be, and the difficulty in framing legislation with effective safeguards. Quotations from the submissions illustrating this point are; “No safeguards are strong enough to prevent involuntary euthanasia.” (Mrs S Richardson, Ref. No. 69) and “I have serious doubts whether it is possible to frame laws which allow euthanasia while protecting those who are old, ill or disabled who do not want to die this way” (Dr P Bregazzi, Ref. No. 194).
8.2.3.13 Residency Issues The joint sponsors of the proposed Bill have stated that the proposed Bill would contain a residency clause, which would stipulate that only residents of the IOM would be able to qualify for assisted dying (HK Select Committee, 26/01/04). It would appear that the concept of ‘suicide tourism’ and the residency issue are important to the Manx public, with 8% of submissions raising the subject. The general concept of not wanting ‘suicide tourism’ for the IOM was raised by the majority of these submissions and two respondents were concerned that people would move to the IOM “in preparation” of death to wait the prerequisite time before they can qualified for assisted dying under the proposed Bill. The only three submissions in this category that were in support of the proposed Bill drew up residency conditions under which they would be prepared to support the Bill. It was specified that patients should be “resident for at least two years” (Mr F Tilston, Ref. No. 12; IOM
70 Freethinkers Ref. No. 104) or that it should “only be available to people normally resident in the Isle of Man at the time of diagnosis or have an established and strong association with the Island prior to diagnosis” (Mec Vannin, Ref. No. 217). 8.2.3.14 Doctor-Patient Relationship With respect to the doctor-patient relationship, 16% of respondents wrote that it would be “changed”, “damaged”, or “undermined”. All references to the doctor-patient relationship were made in submissions in opposition to the proposed Bill, with the exception of one respondent who did not specify his view on the proposed Bill. Respondents felt that patients’ trust and confidence in doctors would be adversely affected; “Euthanasia will no doubt call into question the essential relationship of trust the needs to exist between patient and doctor” (Rev K Jackson, Ref. No. 111). 8.2.3.15 The ‘Slippery Slope’ & Abortion The issues of a ‘slippery slope’ and abortion were closely associated in responses. This was because it was considered that the UK Abortion Act had been extended beyond its original intentions and that this was also a possible risk of the proposed Bill. Out of the 28% of responses that mentioned either abortion or a ‘slippery slope’, 68% of these drew attention to both issues. An example of these views is; “Recent experience has shown that once a course of action is legalised for the ‘difficult cases’ it soon becomes acceptable – even routine, as in the case of abortion” (Mrs C Best, Ref. No. 29). Concern was also expressed about the occurrence of a ‘slippery slope’ without reference to abortion; “Experience suggests that legislative change can lead to significant changes in social attitudes and that such changes can quickly extend into supporting actions which were not envisaged by the legislature” (Ven. B. Partington, Ref. No. 89). The majority of references to a ‘slippery slope’ or abortion were in submissions in opposition of the proposed Bill, with only five submissions in support of the proposed Bill mentioning these subjects. Of those in support of proposed legislation that referred to the ‘slippery slope’ the general view was that “fear of abuses of law should not detract from the need for legislation” (Mrs S Pelling, Ref. No. 24). It was also felt that if abortion was legal and accepted then euthanasia should also be; “I cannot understand…if I were to choose to have an abortion, therefore chose death for another person, this would be acceptable, yet to choose to end my own life would not?” (Mrs J Kneale, Ref. No. 57). 8.2.3.16 The Effects on Society An argument employed by those in opposition to the proposed Bill was that if enacted it would have an adverse effect on society (referred to by 8% of submissions). The Salvation Army, IOM, articulated an example of the general view expressed which was; “We believe that the introduction of euthanasia in the Isle of Man would create an unwelcome paradigm shift in our society” (The Salvation Army, Ref. No. 122). 8.2.3.17 Demand for Assisted Dying The issue of whether or not there would be a demand for euthanasia or physician-assisted suicide in the IOM was raised by 8% of respondents. Around half the submissions referring to demand were opposed to the
71 proposed Bill and the majority of these drew on medical experience in support of this argument. For example, “No one has asked me to end their life in the face of incurable illness” (Dr A Stone, Ref. No. 47). In one case religious experience was drawn upon, “Never in all my ministrations have I been met by a request to help someone end it all” (Father G Hurst, Ref. No. 16). Those in support of the proposed Bill who referred to the demand for assisted dying mainly drew on personal experience, with two submissions drawing on medical experience. Submissions that included personal experience of this kind generally expressed the desire for the option of assisted dying to be available to them if they wanted it; “I believe that the number of eligible people who would opt for voluntary euthanasia would be small…I would hope to have the option of voluntary euthanasia. I might not take that option but I would like to have the choice” (Mr R Sharp, Ref. No. 129). Among those that supported the proposed Bill the medical opinion was that a genuine demand did exist. “Over the years, I have heard such people (constant pain, paralysed and permanently in a wheelchair) say to me and others, ‘I have had enough, I really don’t want to live like this anymore. I would like to die’. These requests have been made consistently and repeated over months and sometimes years by people who are cognitively unimpaired and who are able to reason and rationalise” (Ms C Milner, Ref. No. 117). 8.2.3.18 Difficulties of Diagnosis & Prognosis The difficulties of diagnosis and prognosis were recognised by 7% of respondents (all of which were opposed to the proposed Bill, bar one individual who did not state their view). Concern was expressed that patients may be allowed to make use of the proposed Bill, were it enacted, not making fully informed decisions if the diagnosis of their illness was incorrect. Furthermore, a common clause in assisted dying legislation is that the patient must have a specified period of time to death, and concern was expressed that the prediction of this period is complex and difficult; “medicine is not an exact science and precise prognostication is usually impossible” (Mr S Stock, Ref. No. 39). 8.2.3.19 Advance Directives & Living Wills The subject of advance directives and living wills was raised by 5% of respondents. In terms of opinions on the proposed bill in this category, opinions were split equally between those in favour and those opposing (with one submission not stating an opinion). It appears that some consider advance directives/living wills to be a compromise between the need for patient autonomy and the difficulties associated with legislating for assisted dying. For example, “If the Committee feels that this is not the time to introduce …legislation on the subject [of assisted dying]…please look at some of the less contentious things that could be done…one of the areas I have in mind is the situation on ‘advance statements’, ‘advance’ directives’ and ‘living wills’” (Mr P Bryden, Ref. No. 63), and “many would agree that 'living wills' are a good idea and they ought at least to be discussed before we go down the road of active euthanasia on the Isle of Man” (Ms F Masheter, Ref. No. 179). Some respondents sent examples of advance directives/living wills, one couple sent copies of their own living wills that they had drawn up with their GP. “We have both had a parent in the position that the quality of life had gone. As a result we both made living wills that refuse any treatment of life- saving drugs that will not improve quality of life with the exception of pain-
72 killers” (Mr & Mrs Curwen, Ref. No. 15). The IOM Freethinkers had specific ideas for the future of living wills in the IOM; “We would like to see legislation in the Isle of Man including provision for a free national database for the registration of living wills and their promotion through the DHSS (Department of Heath and Social Services)” (IOM Freethinkers, Ref. No. 104). Nonetheless, the limitations of living wills were also recognised; “Regardless of whether a living will is in place, there can be no absolute guarantee that a terminally ill person actually wants to die” (Mr N McFarlane, Ref. No. 19). 8.2.3.20 Double Effect Medication A few respondents (3%) raised the issue of double-effect medication, all of which were against the proposed Bill. However, the concept was acknowledged as “moral” and “acceptable” on the understanding that “motive” and “intention” were fundamental. 8.2.3.21 Manx Relations There were fears expressed that the IOM would gain a reputation as an “Island of Death” (Ms K Smith, Ref. No. 107) or the “killing capital of the British Isles” (Mr A Hewitt, Ref. No. 18) if the proposed Bill were enacted, or that the IOM would lose the respect of other nations (Ms H De Backer, Ref. No. 144). The issue of Royal Assent and the possible effects if this were to be refused was raised by four respondents. It was felt in some cases that Royal Assent was likely to be refused (Mr R G Taylor, Ref. No. 201 and Rev K Jackson, Ref. No. 111). Other respondents were concerned about the possible implications of a refusal of Royal Assent; “given that Westminster could potentially overrule our Parliament, is Tynwald willing to risk the possible consequences of having its power reduced, thereby reversing the long-term trend towards greater autonomy?” (Mr I Whiteway, Ref. No. 188), “if the Island were to progress an Euthanasia Bill to Royal Assent there is every reason to believe given the decision in the House of Lords that the United Kingdom Government may refuse to give the Bill Royal Assent. This would lead the Island into a constitutional crisis and damage the independent image the Island’s Government has built up over the years” (Mr J Lalor-Smith, Ref. No. 112). This issue of Royal Assent was discussed earlier in section 6.12. 8.2.3.22 References to Nazis Comparisons were drawn between the concept of euthanasia and physician- assisted suicide and the actions of the Nazis. 5% of respondents made this comparison all of whom were in opposition of the proposed Bill. Examples of these views are “A new generation of doctors trained to believe that they may legally end a patient’s life conjures up memories…of Nazi philosophy” (Dr F McAll, Ref. No. 92) and “We are told that in Nazi Germany many of those involved in the euthanasia programme there were doctors who were moved initially by compassion for their victims” (Mrs S J Lalor-Smith, Ref. No. 94). The opinion was also expressed that reference to Nazis is “emotional nonsense” (Mr D Drower, Ref. No. 128) and that the view that “legalisation of voluntary euthanasia would lead to a Nazi-like killing of the mentally and physically disabled…this seems improbable to me” (Mr R Sharp, Ref. No. 129).
73 8.2.3.23 The Role of Health Care Professionals The role of health care professionals if the proposed Bill were enacted was a concern for 18% of respondents, all of whom were opposed to the proposed Bill. Concern was expressed over the power, burden and change in role that would be imposed on the medical profession if assisted dying was legalised. It was considered that no one had the right to impose the responsibility of assisting in either euthanasia or physician-assisted suicide on the health care profession. The Hippocratic oath was quoted or referred to in 11% of submissions and it was stated that assisted dying would contravene the contents of this oath. 8.2.3.24 Conscientious Objection Concerns were expressed by 2% of submissions as to whether there would be protection for health care professionals that did not want to participate, or whether that protection would be sufficient. “What protection would there be for doctors and hospital staff who do not wish to be associated with euthanasia? (Dr P Bregazzi, Ref. No. 194) and “Even if a doctor can pass over to another doctor someone wishing to have euthanasia, that doctor will still feel that he has participated” (Mrs D Kelly, Ref. No. 125). 8.2.3.25 Recruitment of Medical Professionals The issue of recruitment of medical professionals to the IOM was discussed by two respondents, although others expressed that they themselves would not be involved. The views were that “the Isle of Man would become attractive to doctors who supported euthanasia and unattractive to those with a high view of the sanctity of human life. It could be increasingly difficult to attract doctors” (Dr G McAll, Ref. No. 22) and that legislation “might affect the decisions of doctors and nurses who may not wish to come to the Island for employment if they knew they may be asked to assist in a patient’s death” (Miss A Corrin, Ref. No. 174). 8.2.3.26 Miscellaneous This section includes statements made by respondents that do not correspond to any of the above categories and were expressed by only one or two individuals. Two respondents specified that the views of certain groups of people should be given priority; “usually all views expressed tend to be given equal weighting of importance, whereas the views of those ‘unfortunate people’ who are suffering from a ‘progressively deteriorating terminal illness’ with a ‘poor and deteriorating quality of life’ should be given an overwhelming weighting” (Mr F Tilston, Ref. No. 12), and “I would suggest that special weight be given to the views of palliative care specialists, who spend their lives in caring for those with difficult terminal illnesses, and to the views of psychiatrists, who care for those with depressive illnesses” (Dr J Lester, Ref. No. 133). Other views were expressed that referred specifically to the situation in the IOM. The IOM Freethinkers felt that the IOM is “compact enough for the legal safeguards…to be monitored with appropriate care” (Ref. No. 104). Attention was drawn by two respondents to the fact that the word “unbearable” is not in the title of the Manx proposed Bill, unlike the UK ADTI Bill (Mr and Mrs Murcott, Ref. No. 13 and Rev. G Breffit, Ref. No. 83).
74 8.2.4 Manx 4 Death with Dignity Postcard Campaign The Manx 4 Death with Dignity (M4DWD) campaign was set up by Mr and Mrs P Kneen. In August 2003 the organisation conducted a privately run postcard campaign. The postcards, the format of which can be seen at Appendix 9, were circulated with the Courier newspaper. The circulation of the Courier newspaper for July to December 2003 was 35,593, however Mrs P Kneen has reported that the distribution of the postcards was not complete and not all households that received a Courier received a postcard. The postcard asked people to support a change in law to legalise doctor assisted dying for mentally competent, terminally ill adults who have made repeated requests for assistance to die. Mrs P Kneen informed the HK Select Committee that 3195 postcards, representing 4353 individuals, were returned in support of the M4DWD campaign. There was no option on the postcards for people to express their opposition to the campaign, nonetheless a total of 53 postcards were returned in opposition. This figure cannot be representative of the level of opposition amongst those who received a postcard as the option of opposition was not available, however it can be taken to show that there were people who felt strongly enough to return the postcards with an alternative view.
8.2.5 NOP Survey and Others 8.2.5.1 In 2004 National Opinion Poll (NOP) conducted a small omnibus survey of 500 IOM residents for the Voluntary Euthanasia Society (VES). The question was asked, “On the IOM it is a criminal offence to assist a person to commit suicide. Do you think this law should be changed so that assisting a person to commit suicide is no longer an offence?” 7% responded that it should no longer be an offence to assist suicide under any circumstances, 68% responded that it should no longer be an offence to assist suicide when that person is suffering from an incurable disease, and 21% said that the law should not be changed.
8.2.5.2 The proposal of the Bill and the request for evidence from the public generated a great amount of debate in the IOM on the radio and in the newspapers. IOM Newspapers informed Border TV that they had the impression that those who are taking the trouble to express their views are evenly split and the strength of feeling has been diverse. “I’d say the letters coming in to the paper are probably …fifty-fifty either side with some people on the fence still at the moment not knowing what to say” (Mr J Quirk, Chief Reporter IOM Newspapers, Right to Die: Border TV Production, broadcast 08/01/2004). 8.3 Public Opinion in Europe
8.3.1 UK 8.3.1.1 The HL Select Committee issued an invitation for anyone to express his or her personal views of the ADTI Bill. The Select Committee received 9,709 letters, 2,720 emails, and 1,800 stereotyped letters, proformae or letters with multiple signatures. Of the 12,429 people who wrote individual letters or emails 6284 (50.6%) supported the Bill and 6145 (49.4%) opposed it. If stereotyped letters etc. are included in the calculation 7,283 (51.2%) supported and 6,946 (48.8%) opposed the Bill.
75 8.3.1.2 Between 1976 and 2004 NOP conducted six surveys in the UK for VES concerning receiving medical help to die. The results of these surveys are shown in Table 4. It should be noted that the questions asked differed for 2002 and 2004.
Year % For / % Against / % Undecided Question Yes No / Don’t know (see below) 1976 69 17 14 1 1985 72 21 8 1 1989 75 16 9 1 1993 79 10 11 1 2002 81 12 7 2 2004 82 11 7 2 Table 4 NOP surveys in the UK for VES between 1976 and 2004. (Question 1: “Some adults say that the law should allow adults to receive medical help to an immediate peaceful death if they suffer from an incurable physical illness that is intolerable to them, provided they have requested such help in writing”. Question 2: “Do you think that a person who is suffering unbearably from a terminal illness should be allowed by law to receive medical help to die, if that is what they want?”)
8.3.2 Guernsey 8.3.2.1 In response to an advertisement in the Guernsey Press and on the Internet the Guernsey Death with Dignity (DWD) Working Party received 296 submissions from interest groups and members of the public regarding DWD or voluntary euthanasia. In terms of public opinions, 226 (76%) submissions opposed and 70 (24%) submissions were in favour of DWD or voluntary euthanasia. The main points raised by the submissions were summarised into 12 categories, broadly comparable to the categories considered above. The DWD Working Party concluded that those prepared to take the time to make a submission were in the majority, against a change in legislation.
8.3.2.2 A small omnibus survey was carried out for VES by NOP in Guernsey, questioning 500 Guernsey residents. It was asked, “Do you think that a Guernsey resident who is suffering unbearably from a terminal illness should be allowed by Guernsey law to receive medical help to die, if this is what they want?” 77% felt that the patient should be allowed to receive medical help to die, 16% felt the patient should not, and 7% did not know.
8.3.3 Belgium An INRA poll interviewed 1,034 individuals over the age of 15 years old, asking them to “Imagine you were terminally ill, would you then use the possibility of euthanasia and ask to be put asleep?” 71% said that they would, 28% said that they would not and 1% did not know if they would or not. The individuals were then asked, “If not, can you accept that other people appeal to the solution of euthanasia?” In response to this 58% of the 28% who refused the idea for themselves can accept that others would want this solution. INRA therefore concluded that 88% of Belgians are in favour of euthanasia either for
76 themselves or others. A further INRA poll in March 2001 asked 2000 Belgians if the legal proposals being considered by the Belgian Parliament which would decriminalise assisted dying within certain safeguards were a good idea. 72% thought that the proposals were a good idea, 18% thought they were not and 10% said they did not know.
8.3.4 France IFOP conducted a poll in April 2001 asking “Some people suffering unbearably from incurable illnesses ask doctors for euthanasia – the doctors put an end to their lives without their suffering. Do you think French law should authorise doctors to peacefully end the lives of people who suffer unbearably from incurable illnesses and request this?” 38% believed that doctors should be authorised to end lives, 50% said they should in certain circumstances; therefore there was in total 88% support for assisted dying in certain circumstances.
8.3.5 Germany A FORSA poll in April 2001 questioned 1000 individuals whether there should be legal regulation of assisted dying for terminally ill people, allowing them to request medical help to end their life. 75% of the individuals surveyed believed that patients should be allowed to request medical help to end their lives.
8.3.6 Greece A study in Greece in 1999 of 1,500 physicians revealed that 46% believed that euthanasia could be an option for dying patients in the terminal stages of cancer (Mystakidou et al. 1999)
8.3.7 Spain A United Consumers Organisation poll in January 2002 stated that 70% of the Spanish population was in favour of the legalisation of medically assisted dying. 8.4 Discussion 8.4.1 The issue of euthanasia and physician-assisted suicide is very sensitive and complex; the response from the Manx public reflected this in that many of the responses were diverse and emotive. The submissions from the Manx public raised a great many issues, both ethical and practical, concerning euthanasia and physician-assisted suicide. The most discussed topic was religion, with 49% of the submissions referring to religion in their arguments both for and against the proposed Bill. It is apparent that religion is an important issue for society in the IOM. The second most recurrent subject was hospice or palliative care (47% of submissions), its capacity and limitations, and the effects the proposed Bill would have upon it. Many submissions also expressed support and high regard for Hospice Care in the IOM. The third most discussed concern was that there would be pressure on vulnerable groups of people to either consider euthanasia or physician-assisted suicide when they would not have done if the law had not been changed, or that there would be pressure placed on them, whether real or perceived, to request euthanasia or physician-assisted suicide (40% of submissions).
77 8.4.2 There is discrepancy between the degree of support for the proposed Bill in the public submissions, the M4DWD postcard campaign and the results of the NOP survey in the IOM. A total of 13.4% (30) of the public submissions expressed support for the proposed Bill, and 4353 (and if it is accepted that there were 35,593 postcards circulated, this corresponds with an estimate of 12.2% support) individuals supported the M4DWD campaign but 75% (375) of members of the Manx public expressed support for assisted suicide in certain circumstances according to the NOP survey. The submissions represent the response from an advertisement inviting the opinion of the Manx public regarding the proposed Bill, postcards distributed with a local newspaper and the NOP survey which was a telephone survey of 500 Manx residents. The three methods may have targeted different sections of the population and it must be considered that comparability of these results is minimal, see section 8.4.4.
8.4.3 In comparison with the UK and Guernsey public response the Manx public response is more opposed to the concept of euthanasia or assisted suicide than either of the other two jurisdictions. The UK public was nearly evenly split for and against the ADTI Bill and the Guernsey public indicated nearly ¼ in support and ¾ in opposition of assisted dying being legalised. However, the Manx public response was 13.4% in support and 84.4% in opposition. These differences may be attributable to the demographic characteristics of the respondents in each case. However, it can only be speculated as to why there is such divergence between the Manx, Guernsey and UK public submissions.
8.4.4 Evaluation of public opinion on such a controversial and complex subject as assisted dying is bound to be problematic; it is difficult, therefore, to obtain an accurate picture of public opinion. Comparison between different surveys, both within the same country and internationally, is not straightforward as almost none have a common design, the framing of the questions asked could greatly influence the responses given and problems may arise from differences in definitions of euthanasia and physician-assisted suicide (Materstvedt et al. 2002). This issue was raised by Dr B Harris, representing the IOM Medical Society, who told the HK Select Committee “With any poll, how questions are asked is vital. All too often the question has been asked along the lines of ‘Do you think terminally ill patients with unrelenting pain and suffering should be allowed to die at their own request?’ When put in this misleading way, it is not surprising that some support it, especially when it is viewed as some kind of abstract concept involving someone else. If, for instance, the question had been put as ‘Would you support euthanasia, even if it risked placing a duty to die on the most vulnerable?’ then a different answer might have been obtained”. Taking the public submissions results at face value, the support for euthanasia or physician-assisted suicide in the IOM is minimal. Nevertheless, according to the NOP survey there is a great amount of sympathy for the concept of physician-assisted suicide amongst the Manx public.
78 9. Hospice & Palliative Care 9.1 Introduction The issues of euthanasia and assisted suicide have been debated to a great extent in the field of palliative care. Those working in palliative care have a vast amount of experience of care for the dying and, therefore, have much to contribute to the debate. The two concepts are also inextricably linked due to their shared goals of achieving death without suffering (Forbes and Hanks 2003). This section examines palliative care and the possible effects that legalising euthanasia or assisted suicide might have on it in terms of development and research. A major issue in the debate about assisted dying within palliative care is whether or not it could be provided within hospice care, and whether the provision of assisted dying could be complementary to palliative care, the situation in Oregon is drawn upon to illustrate how the two concepts can be complementary. The provision of palliative and hospice care in England, Guernsey, Jersey and the IOM is examined and the limitations of palliative care in general are discussed. 9.2 Definition of Palliative Care The World Health Organisation (WHO) published a definition of palliative care that states; “Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life- threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. Palliative care: • Provides relief from pain and other distressing symptoms • Affirms life and regards dying as a normal process • Intends neither to hasten nor postpone death • Integrates the psychological and spiritual aspects of patient care • Offers a support system to help patients live as actively as possible until death • Offers a support system to help the family cope during the patient’s illness and in their own bereavement • Uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated • Will enhance quality of life, and may also positively influence the course of illness • Is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications” (Sepúlveda et al. 2002). 9.3 Position of EAPC The European Association for Palliative Care (EAPC) published it’s first position statement regarding euthanasia in 1994 (Roy, Rapin et al.1994). The Board of Directors of the EAPC fully endorsed the position of the paper which was “We should firmly and without qualification, oppose the legislation of euthanasia as both unnecessary and dangerous.” In 2002 EAPC decided to form an Ethics Task Force to review the position on euthanasia. This was due
79 to major developments and achievements in the field of palliative care and to legislation having been passed in the Northern Territories of Australia (since repealed), Oregon, Belgium and the Netherlands. The new position paper was not endorsed by the Board of Directors of EAPC, nonetheless it was published by European Journal of Palliative Care and Palliative Medicine who subsequently invited a peer review of the paper, generating much discussion and debate of the subject of euthanasia and assisted suicide. The Ethics Task Force concluded inter alia that “Individual requests for euthanasia and physician- assisted suicide are complex in origin and include personal, psychological, social, cultural, economic and demographic factors. Such requests require respect, careful attention, together with open and sensitive communication in the clinical setting”, “Requests for euthanasia and physician-assisted suicide are often altered by the provision of comprehensive palliative care. Individuals requesting euthanasia or physician-assisted suicide should therefore have access to palliative care expertise” and “The provision of euthanasia and physician-assisted suicide should not be part of the responsibility of palliative care” (Materstvedt et al. 2003). These views represent a more considerate and moderate stance towards euthanasia and are in great contrast to the views of the 1994 Task Force. 9.4 Palliative Care Research Concerns have been expressed both in scientific literature, by health care organisations and the public that the legalisation of assisted dying would lead to a decline in investment into research for pain relief or terminal illnesses and would damage the development of the field of palliative care. This was an issue raised by the EAPC Ethics Task Force (2003) who believed that if euthanasia were legalised the potential exists for the underdevelopment or devaluation of palliative care (Materstvedt et al. 2003). The Director of Nursing Midwifery and Professional Development at Noble’s Hospital, Miss B Critchlow, told the HK Select Committee that “One of the key things to people’s opposition to this is that, if assisted suicide and voluntary euthanasia are introduced, then those advances [in recent years] may actually slow down, or people and the professions and research et cetera may not invest in the same way that they have done, in trying to find ways of relieving what can be distressing symptoms of dying”. 9.5 Euthanasia and Palliative Care 9.5.1 There is debate whether, if euthanasia and assisted suicide were legalised they should be within the remit of palliative and hospice care or not. The EAPC Ethics Task Force declared that “The provision of euthanasia and physician-assisted suicide should not be part of the responsibility of palliative care” (Materstvedt et al. 2003). Dame C. Saunders, founder of the modern hospice movement, expressed the opinion that “Whatever our views on euthanasia, it surely cannot and should not be introduced as a logical part or extension of palliative care” (Saunders 1992).
9.5.2 Support for the practice of euthanasia within the provision of palliative care can drawn from the situation in Oregon. Ms D Annetts, representing the Voluntary Euthanasia Society (VES) told the HK Select Committee that “The latest report from Oregon, which was last year [2003], showed that 93% of patients who actually had help to die were in Hospice at the time. So, again, what you see is a coming together of Hospice provision and also including in
80 that the possibility of medical help to die as one of the many options made available to patients”. Dr J Garland, a Clinical Psychologist with the Oxfordshire Mental Healthcare Trust, also referred to the practice of physician-assisted suicide for patients within Hospice programmes in Oregon, again implying that euthanasia and palliative care can be complementary (HK oral evidence). Ms D Annetts told the HK Select Committee “We [VES], ourselves, see this option very much as within the context of palliative care”. The UK ADTI Bill prescribes that “the attending physician shall ensure that a specialist in palliative care has attended the patient to discuss the option of palliative care” (Clause 3(1)). The HL Select Committee on the ADTI Bill acknowledged that as a result of this Clause (3(1)) the Bill “seeks to make the provision of palliative care complementary to the opportunity to have assistance with suicide or voluntary euthanasia” (HL Report paragraph 257).
9.6 Palliative Care in England The House of Commons published the Fourth Report on Palliative Care in England in 2004. The report concentrated on the current resources of palliative care and inequity of provision. Palliative care in England is provided by the National Health Service (NHS), independent Hospices and other voluntary services. There were 237 palliative care consultants in England in 2002, which corresponds to a full time staff of 169. There were also 100 posts for consultants in palliative care unfilled in 2002. The Report stated that the government aims to double the number of palliative care consultants by 2015 based on the figures for 2002. With respect to the provision of palliative care in England, a quarter of people who die in England access some form of palliative care, however, there are inequities in this provision. The report acknowledged inequity in geographical area, age group, and ethnic group. They found that those with complex needs were less likely to have awareness of, and secure access to, palliative care services. The greatest inequity was the lack of palliative care services for non-cancer sufferers. Over 95% of patients in hospices have cancer, and cancer dominates the structure through which palliative care is mapped and distributed. It was established that some hospital palliative care teams had up to 30% non-cancer referrals but that fewer than 10% hospital beds were devoted to non-cancer patients. The reason for this inequity was attributed to the limited capacity of the services, different expectations from patients and carers, different trajectories of diseases other than cancer, and the lack of appropriate expertise in specialist units.
9.7 Palliative Care in Guernsey 9.7.1 Palliative care in Guernsey is provided by the Board of Health by means of clinical specialist nurse posts and the district nursing service. There are three clinical nurse specialist posts in palliative care which are based in the oncology unit at Bulstrode House; these nurses have received specialist palliative care training. Their role is to visit patients, work closely with other professionals, liase with Les Bourgs, utilise voluntary organisations e.g. Guernsey Society for Cancer Relief and the Red Cross, act as consultants to other health professionals, develop policies concerning palliative care, conduct a rolling education programme for nurses, and organise the “link
81 nurse scheme” which consists of monthly meetings to discuss palliative care issues. The district nursing service provides care for patients and support for carers in the home environment.
9.7.2 In the survey of medical professionals conducted by the Guernsey Death with Dignity (DWD) Working Party the respondents were asked whether they felt that palliative care services in the Bailiwick were adequately resourced. Almost half of health professionals surveyed (46%) felt that the palliative care services were not adequately resourced, and only 27% felt that they were. In terms of awareness of the availability and access to palliative care services 67% of health professionals felt that the public lacked knowledge or clarity about the availability of and access to palliative care services in Guernsey, although 42% felt that there was not the same lack of knowledge amongst the medical professions. 9.8 Palliative Care in Jersey The first hospice in Jersey was founded in 1981 and was originally a home care service. The need for a hospice building was identified in 1984 and Clarkson House opened in 1985. Jersey Hospice Care is nurse lead with 65 staff, 18 of which are full time. The daily running cost is £4,600 and it is supported through the public and legacies. Jersey Hospice Care has strong links with Southampton Countess Mountbatten Hospice and a palliative care specialist visits Jersey regularly. 9.9 Palliative Care in the Isle of Man 9.9.1 Hospice Care in the IOM was founded by members of the IOM anti- cancer association and registered as a charity in 1983, with the first patients admitted in 1984. Mr J Quinn, Chairman of the Management Committee of Hospice Care in the IOM, explained Hospice Care’s aims and management to the HK Select Committee. “It [Hospice Care] is a company which is limited only by guarantee. It is obviously based here, and its only objects, which are charitable objects, are to provide hospice 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 committee, as opposed to a board of directors… Members of the management committee, as trustees of the charity, have a serious legal responsibility requiring them to take an active role in the governance of the charity. We are, by law, required to act in person, and any decisions affecting the charity have to be made collectively. We do, however, have the power to delegate, and in this respect we delegate the day-to-day management of the charity and its operations to our staff, who we must ensure are properly educated, qualified and, certainly from our point of view, have access to continuing education, particularly in the field of palliative care”. The services offered by Hospice Care include a day unit, a physiotherapy unit, an occupational therapy unit, a lymphoedema nurse, St Bridget’s Macmillan nurses working in the community, services of a social worker, complementary therapies, bereavement services, and a chaplaincy (Mr J Quinn, HK oral evidence).
9.9.2 Recipients of Hospice Care IOM 9.9.2.1 Mr J Quinn described Hospice Care as, essentially, a cancer charity. However he emphasised that they also offer hospice care to patients suffering from any other condition in the terminal phase, where treatment has got past
82 the stage of managing the disease itself, to managing the end stage (HK oral evidence). Dr B Harris, speaking on behalf of the IOM Medical Society, stated that over 95% of patients with serious cancers are referred to palliative care services, often shortly after diagnosis (HK oral evidence). There are three general categories of admissions into Hospice Care, those receiving respite care, those in need of focused symptom control which may not be simply physical pain and suffering but psychological, social and spiritual issues, and finally those who are admitted for terminal care (Mr J Quinn, HK oral evidence).
9.9.2.2 Each year around 250 patients are referred to Hospice Care. Of these approximately 60% (150) would have a significant contribution from the Macmillan nurses. The in-patient hospice unit can accommodate a maximum of ten patients. However the caseload of Hospice Care is around 350 (Dr B Harris, HK oral evidence). For the year ending 31st December 2003, there had been a total of 199 admissions to the in-patient unit, and some 103 patients had been cared for by the Hospice at Home service (Mr J Quinn, HK oral evidence). Evidently, the majority of Hospice Care’s work is conducted external to the Hospice Care building (Dr B Harris, HK oral evidence).
9.9.3 Euthanasia & Hospice Care IOM Mr J Quinn emphasised that if euthanasia or assisted suicide were legalised, they would not be offered within the services of Hospice Care and that “it is so contrary to the ethos of Hospice Care and our views on what palliative medicine can do, that it would be wrong to introduce it”. It is not Mr Quinn’s view that the introduction of euthanasia or assisted suicide would damage Hospice Care, but that as the philosophy of Hospice stands it would not be possible without a change in the that philosophy. He considers that if Hospice Care were to offer euthanasia or assisted suicide to its patients it would be “an admission that Hospice Care has failed to provide the patients with the palliative care they require” (Mr J Quinn, HK oral evidence).
9.9.4 Improvements Although a comprehensive service exists in Hospice Care that works harmoniously with the hospitals and the primary health care teams there are limitations of Hospice Care. In England a recent report (section 9.6) found inequity in palliative care provision with respect to geographical area, age group, and disease. As a result of the size of the IOM and the operation of Hospice Care there is not the same problem of inequity of care due to geographical area. However, there does exist an inequity of provision of palliative care in the IOM in terms of age group. Dr B Harris explained, “One area that we [Hospice Care] are trying to improve is the care of children. We sometimes have to make use of facilities off the Island. With certain things it is not practical to provide them on the Island, so people have to be flown across to Liverpool for various things” (Dr B Harris, HK oral evidence). The greatest inequity in palliative care services identified in the report into palliative care in England was inequity with respect to disease in that non-cancer sufferers did not receive the same scale of services as cancer sufferers. This same problem was identified by Mr J Quinn who stated that Hospice Care is unable to offer the full range of their palliative care services to non-cancer patients. Mr J Quinn considered that Hospice Care should be aided by the Manx Government to attend to any limitations of their services; stating “My view is
83 that what ought to happen is that there should be more effort made by the government to develop palliative care services, and to the extent that if the Hospice and others providing palliative care have any shortfall in being able to address the issues, to ensure that that does not happen” (Mr J Quinn, HK oral evidence). 9.10 Limits of Palliative Care 9.10.1 The National Council for Hospice and Specialist Palliative Care Services (NCHSPCS) has stated, “No amount of palliative care can address concerns regarding loss of autonomy and control over bodily functions because these are existential rather than medical concerns” (1997, website ref. 4). Ms D Annetts clarified that several organisations involved in palliative care have expressed a similar view, “Both the National Council for Hospice and Specialist Palliative Care Services and Macmillan Cancer Relief, amongst other organisations, have recognised that, even with the very best palliative care, this still does not meet the needs of everybody” (HK oral evidence). For those whose needs are not met, it is generally emphasised that this is by no means the result of poor palliative care; rather it is the nature of the care itself that does not suit them. Dr J Garland told the HK Select Committee, “There are people who do not want to be in the hospice. There are also, of course, many people who do and the hospice is a marvellous movement, and for 98 or 99% 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 something else which they cannot have, namely assisted dying, who just want to escape from the whole process and, for them, it is extremely difficult to adapt to hospice, no matter how splendid the care is – and the care usually is splendid and excellent”. The Ven. B Partington OBE, Archdeacon, speaking on behalf on the Churches, expressed the opinion that demand for euthanasia or assisted suicide may be as a result of inadequate care; “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 was even a prima facie argument for euthanasia. Better alternatives [for] alleviating distress would almost always be available, if modern techniques in human understanding and care of patients were universally practiced. It should be the aim, whatever the cost, to improve the care of the dying in hospitals and hospices and homes to as near this standard as money and staff will allow” (HK oral evidence). The survey of medical professionals in Guernsey revealed that 69% of medical professionals felt that the provision of best quality palliative care supported by a greater awareness amongst the medical professions and the public of the availability of, and access to, such services would reduce calls for the introduction of legislation to support ‘doctor assisted death’.
9.10.2 Interestingly, a study has suggested that cancer patients receiving hospice care were twice as likely to want help to die than those who were not receiving hospice care, even when the care received was considered to be good or excellent. The reason for this may be that care in hospices provides an environment where people are more willing to express their worst fears by “positively asserting their desire to control events” (Seale and Addington-Hall 1995).
84 9.11 Discussion 9.11.1 It is inevitable that those working in palliative care have been drawn into the debate and discussion of the complex issues involved in euthanasia and physician assisted suicide because care of the dying is part of their day- to-day work (Forbes and Hanks 2003). A major issue considered in the debate is whether there should be a clear separation between palliative care and assisted dying and whether it should be provided within the remit of palliative care. Some suggest that allowing assisted dying would be damaging to palliative care, especially in terms of development and research. Alternatively, the legalisation of assisted dying may support or enhance palliative care by causing a revaluation and strengthening of palliative care. It has been made clear that if assisted dying were legalised in the IOM it would not be provided within Hospice Care. However, an example of how assisted dying and palliative care can be complementary is illustrated by the situation in Oregon where 93% of those who receive physician-assisted suicide are in a hospice care programme. Furthermore, Clause 3(1) the UK ADTI Bill which prescribes that “the attending physician shall ensure that a specialist in palliative care has attended the patient to discuss the option of palliative care” implies that the practice of euthanasia or physician-assisted suicide would be complementary to palliative care.
9.11.2 Palliative care in the IOM has received much praise in the course of enquiries; however, it is evident that there is an inequity, both in the IOM and in England, of provision of palliative care in terms of disease. Evidence suggests that there is an over-representation in Hospice Care of cancer sufferers; this may be due to a number of factors including the history of establishment of the services, the limited capacity of the services, the expectations of patients and carers, and the lack of appropriate expertise. It is accepted by those working in palliative care that the services provided may not be able to meet the needs of all their patients. This is not due to an inadequacy of care but rather due to the fact that the care cannot address certain issues for some patients such as the loss of autonomy. 10. Issues to Consider in Proposed Legislation 10.1 Introduction This section will examine the issues raised in legislation that has been either enacted or proposed regarding assisted dying. The ways in which these have been approached by the different jurisdictions will be explored in order to understand the possible alternatives. Mec Vannin submitted a substantial amount of evidence to the HK Select Committee regarding a possible framework within which a “meaningful and workable act can be established”, and where applicable these opinions have been included. 10.2 Euthanasia and Physician-Assisted Suicide The proposed Bill in the IOM would enable a qualifying patient to seek “medical help to die”. It is not specified at this stage whether euthanasia, physician-assisted suicide or both practices would be legalised under certain circumstances. The UK ADTI Bill proposed that the attending physician may only perform euthanasia under the Act if the patient is not physically capable of taking the medication themselves (Clause 1(2)). In terms of the mode of
85 assisted dying legalised in different jurisdictions under certain conditions, in Oregon and Switzerland only physician-assisted suicide and assisted suicide respectively are legal and in Belgium only euthanasia in legal. In the Netherlands either act is legal under certain conditions, although the Royal Dutch Medical Association recommends that physician-assisted suicide be favoured over euthanasia. If a Bill is introduced in the IOM that enables a qualifying patient to seek physician-assisted suicide or euthanasia according to choice, rather than in the case of the ADTI Bill where euthanasia was proposed only when the patient is unable to self-administer medication, Mec Vannin suggested to the HK Select Committee that “If a person requested that they be given the means to commit suicide of their own volition and they passed the point of being able to request that someone intervene, then that is it and they have lost their opportunity… This would mean that there would be no provision for subsequent assistance should they be unable to request for it… This is to avoid any possibility of a person who has changed their mind but is unable to communicate it, being wrongfully killed” (Mr M Kermode, speaking for Mec Vannin, HK oral evidence). 10.3 Age The majority of legislation that has been passed legalising assisted dying has restricted the Act to adults (Oregon, Switzerland and the Northern Territory, Australia), except for that enacted in Belgium and the Netherlands. The Belgian Act restricts assisted dying to adults and emancipated minors, whereas the Dutch Termination of Life on Request and Assisted Suicide (TLRAS) Act makes further provisions for minors. Under the Dutch TLRAS Act an individual who is 16 years old or over and who is no longer capable, but prior to reaching this state was deemed to have a reasonable understanding of their interests and have made a written statement of request for assistance, individuals aged 16-18 with a reasonable understanding and whose parents or guardians have been involved in the decision process, or minors aged 12-16 with reasonable understanding and parental permission can qualify for assistance under this Act. The UK ADTI Bill and the proposed Manx Bill would make assisted dying only available to adults. 10.4 Terminal Illness 10.4.1 Switzerland is the only country to have legalised assisted dying without specifying a medical condition, however the Swiss Academy of Medical Sciences (SAMS) guidelines recommend that the disease justifies the assumption that the patient is nearing the end of life and the suicide organisation EXIT requires that the applicant has a “poor medical prognosis”. The Belgian law on euthanasia requires that the patient be suffering from a serious and incurable accidental or pathological ailment for which there is no solution and provides specific requirements for cases in which death is not imminent. Both the Oregon Death with Dignity Act (ODDA) and the UK ADTI Bill specify that the patient must be terminally ill and that death is expected within a certain time span, for the ODDA this period is six months and in the ADTI Bill death should be expected “within a few months at most”. The Australian Rights of the Terminally Ill Act (ROTI Act) simply specified that the patient must have been suffering from a terminal illness that would, in the normal course, result in the death of the patient. The proposed Manx Bill would enable a patient suffering from a “terminal or a serious and progressive physical illness” to seek assisted dying, with no expected period
86 of time to death specified. The survey of members of the IOM Medical Society found that 67% of doctors agreed or strongly agreed that it would be difficult to decide which conditions met the criteria of a terminal or a serious and progressive physical illness and which did not (section 7.5.4). Dr B Harris, representing the IOM Medical Society, told the HK Select Committee, “Any medical phrase such as ‘a terminal or a serious and progressive physical illness’ will always be open to interpretation”. Mec Vannin specified the conditions under which they would be willing to endorse assisted dying as “where the condition has been diagnosed and confirmed as terminal, with no realistic chance of recovery” and that “assisted suicide should not be available until the illness reaches a profound stage. These stages can only be determined by close consultation with medical experts and will vary according to specific diseases” (Mr M Kermode, HK oral evidence).
10.4.2 Where Acts or Bills concerning assisted dying have specified the conditions of a terminal illness, or a certain prognosis, there have been debates regarding the reliability of diagnosis and prognosis. Concerns were expressed in the public submissions over the accuracy of diagnoses (section 8.2.3.18). In terms of the difficulty of prognoses, the HL Select Committee heard evidence from the Royal College of General Practitioners who told them “It is possible to make reasonably accurate prognoses of death within minutes, hours or a few days. When this stretches to months, then the scope for error can extend into years” (HL Report paragraph 118). Despite the possible inaccuracy of prognoses, they may still be useful in determining the life expectancy of a patient. To study the accuracy of predictions of survival of patients with terminal cancer Glare and colleagues conducted a review of eight published studies that cover more than 1,500 predictions of survival by doctors in 3 different countries over 30 years. They found that despite being inaccurate, clinical predictions are clinically useful. This is because the Clinical Prediction of Survival (CPS) and Actual Survival were strongly correlated and the CPS becomes more accurate closer to the date of death. The conclusion was drawn that although inaccurate, CPS of up to 6 months in length are nevertheless reliable, as they are highly correlated with AS (Glare et al. 2003). The HL report on the ADTI Bill recommended that in any future legislation “consideration should be given to a definition of terminal illness which is based on the realities of clinical practice” (HL report paragraph 251). 10.5 Degree of Suffering The only jurisdiction with legalised assisted dying that does not specify that the recipient must be suffering is Switzerland, however some degree of suffering is implicit in the Penal Code which states that the assistance to die must be motivated by non self serving intentions, for example mercy or pity. The Swiss suicide organisation EXIT specifies that an applicant should be suffering from unbearable pain and suffering a substantial impairment. The Dutch and Belgian Acts state that the recipient of assisted dying must be experiencing suffering that is lasting and unbearable, the Belgian Act goes on to specify that this suffering can be physical or psychological and must result from the ailment. The Australian ROTI Act required the patient to be experiencing suffering and/or distress to an extent deemed unacceptable to the patient. Finally, the UK ADTI Bill required the patient to be experiencing unbearable suffering meaning suffering, whether by reason of pain or otherwise, which the patient finds so severe as to be unacceptable and results
87 from the patient’s terminal illness. The title of the proposed Manx Bill requires that the patient be suffering as a result of an illness. Questions were raised in the public evidence (section 8.2.3.26) as to why the word ‘unbearable’ is not included in the title of the proposed Manx Bill, unlike in the UK ADTI Bill. However, there has been debate over the use of this term in the ADTI Bill as it is highly subjective and requires only that the patient considers the suffering to be unbearable. Lord Joffe has later added that the physician must assess whether it is reasonable for the patient to have come to the conclusion that the suffering is unbearable (HL oral evidence Q142). The HL report on the ADTI Bill recommended that phrases such as “unrelievable” or “intractable” be used rather than “unbearable” as these terms are less subjective (HL report paragraph 256). Mec Vannin expressed the opinion that “The illness must also involve a profound loss of quality of life in terms of extreme pain or faculty” (Mr M Kermode, HK oral evidence). 10.6 Residency 10.6.1 Many public submissions expressed concern about the inclusion of a residency clause (section 8.2.3.13) and the issue was the subject of much discussion in the oral evidence. This concern has risen mainly from the situation in Switzerland where the organisation DIGNITAS assists foreign nationals in suicide. The only currently enacted legislation that has a specific residency clause is the ODDA, which requires evidence of residency but does not specify a necessary period of residency. Clause 1(2) of the UK ADTI Bill specifies that a qualifying patient must have been resident in Great Britain for not less than 12 months. Although the Dutch Act does not contain a specific residency clause the Dutch Guidelines for euthanasia and physician-assisted suicide state that it would not be possible to assist a non-resident to die due to the requirement for a close doctor-patient relationship.
10.6.2 Mec Vannin reflected the response of the general public to this issue in stating, “The mechanisms must be in place to ensure that this facility would only be available to people normally resident in the Isle of Man at the time of diagnosis or having an established and strong association with the Island prior to diagnosis, i.e. there must be no question of people using the Isle of Man to circumvent laws in their own country. This was in response to fears expressed within the party, and in general society, that this could be some sort of death-camp island” (Mr M Kermode, HK oral evidence). Furthermore, two of the public submissions suggested that any legislation for assisted dying in the IOM should only be available to people who have been resident in the IOM for at least two years. Whether or not a specific period of residency was specified would affect the numbers that would take advantage of the Act. In Oregon, where although residency is a requirement there is no specified period, four out of 206 requests for physician-assisted suicide were from patients who had been resident for less than six months, and one patient had moved to the state specifically to take advantage of the legislation (Ganzini et al 2000). Although this is an issue that many have expressed strong views about, it would not be complicated to legislate for securely. The Attorney General confirmed to the HK Select Committee that there would be no difficulty to have a regulation, or in legislation itself, that people would only be subject to legislation if they had been in the IOM for a certain period (HK oral evidence).
88 10.7 Requests 10.7.1 All legislation obviously requires that a request for assisted dying be voluntary and only the Netherlands does not specify that the request must be persistent or repeated. The UK ADTI Bill does not specify the format of the initial request for assistance in dying (which would mark the start of the waiting period, see section 10.7.7), however in oral evidence Lord Joffe told the HL Select Committee that a formal request made in writing and signed should start the processes, with provisions for those not able to write (HL oral evidence Q140). The ODDA requires that the patient make two oral requests for physician-assisted suicide to the attending physician separated by at least 15 days.
10.7.2 Consent 10.7.2.1 The concept of consent is central in health care and a cornerstone of medical ethics. The significance of consent arises from the importance placed on autonomy, which is discussed in section 5. Prof. J Harris of the Institute of Medicine Law and Bioethics at Manchester University told the HK Select Committee that “Consent is there to prevent medical touchings counting as assaults and to support the autonomy of the individual, so that where people consent to what happens to them, that rebuts any suggestion or presumption that they might have been assaulted”. In most jurisdictions the concept of consent in health care is formalised by law. Obtaining consent to treatment in a medical context is routine, as Mr J Quinn, speaking on behalf of Hospice Care, informed the HK Select Committee that patients admitted to Hospice Care consent to admission and to any treatments they would subsequently receive under their care. Mr J Quinn explained further that “[Hospice Care] have issued our own doctors with a protocol governing patient care, with which they have to comply. Part of that protocol and guidance, issued by the BMA to its doctors, is that they must consult with their patients”.
10.7.2.2 It is patent that with regard to assisted suicide and euthanasia the consent of the patient is fundamentally important. Prof. J Harris has explained this as “Where the inevitable outcome of a decision must be that a human individual will die and where that individual is a person who can consent, then that decision is ethical if and only if the individual consents” (Harris 2003). In oral evidence to the HK Select Committee Prof. J Harris stated that “If you know that people want to [die] and you know the consent is genuine and informed and so forth, then that deals with most of the ethical worries that we ought to have.” In all jurisdictions that have legalised some form of assisted dying, the patient’s consent is obviously required.
10.7.3 Capacity & Competency 10.7.3.1 The definition of incapacity is the inability to make a decision in relation to a particular matter because of an impairment of, or a disturbance in, the functioning of the mind or brain. It does not matter whether this impairment or disturbance is permanent or temporary. A person is considered able to make a decision for themselves if they are able to understand information relevant to the decision, able to retain the information relevant to the decision, able to use the information as part of the process of making the decision and able to communicate the decision by any means (Clause 1 draft UK Mental Incapacity Bill 2003). All legislation considered or enacted concerning assisted dying requires that the patient is
89 competent at least at the time of request; in the Netherlands and Belgium an incompetent person can receive assistance to die if they have a valid advance directive made when they were competent. The title of the proposed Manx Bill states that the recipient must be competent, as is the case for the UK ADTI Bill, which defines competency as the capacity to make an informed decision. The ODDA requires the patient to be capable and defines this as the ability to make and communicate health care decisions. The Dutch legislation requires the patient to have a reasonable understanding of his or her interests, and, as mentioned above, if they are no longer capable, they must have made a valid advance directive. The Belgian Act requires that the patient is capable, although it also makes provision for cases where a patient is incompetent but has made a valid advance directive at a time when they were competent. The Swiss law makes no specific requirement of competence, however the SAMS guidelines state that the patient should be capable of making the decision and after a case in 1998 the organisation EXIT recommended that people who wanted assistance with suicide as a result of a mental illness should not be assisted (section 3.5.2). The Australian ROTI Act required that the patient is ‘sound of mind’.
10.7.3.2 During discussion regarding competency in the HK oral evidence the importance of competence was stressed by Ms D Annetts, speaking for the Voluntary Euthanasia Society (VES) who told the HK Select Committee, “At the heart of this decision must be competence. If you do not have competence, then I do not think that person can possibly be given the responsibility and the freedom …to make a decision. I think …that it is very important that the legislation we come up with promotes autonomy on the one hand, but protects the vulnerable on the other hand”. Dr R Huxtable, a lecturer in Medical Law and Ethics, considered the issue of competency and asked the Committee, “If competence and autonomy is the key, then why not extend it to the minor, who is also perfectly competent to take decisions with regard to their own health and welfare?” 10.7.3.3 Depression Concern has been expressed both in literature and in the public submissions (section 8.2.3.8) as to the risk of depression clouding a patient’s decision- making with regard to assisted dying. However, the degree to which different levels of depression will affect competence is uncertain, “It is often argued that mild depression will not mar a patient’s informed clinical decision. Undoubtedly, competence is lost with severe depression. However, the transition phase through which competence is sustained before a depressed person loses their previously held positive world-view is unclear” (Kissane and Kelly 2000). In Oregon, although 20% of applicants under the ODDA had symptoms of depression, none of these applicants received a lethal prescription (Ganzini et al. 2000). Emanuel and colleagues examined attitudes to, and desire for, assisted dying in terminally ill patients in the USA. They found that depressive symptoms and other psychological factors, such as feeling appreciated, appear to be important determinants of both patients’ interest in euthanasia and physician-assisted suicide and the instability of this interest. It was therefore suggested that when physicians are confronted by a patient’s request for euthanasia or physician-assisted suicide they should attend to the possibility of depression and other psychological stressors (Emanuel et al. 2000). Dr J Garland, a Clinical Psychologist with the
90 Oxfordshire Mental Healthcare Trust, told the HK Select Committee, “Research shows that depression is not the primary motivating factor in requests for assistance to die. This has been demonstrated in a number of studies. Indeed from a psychological perspective depressed patients would have difficulty marshalling the energy and determination needed to persevere through the requirements of the law in Oregon”.
10.7.4 Psychological Assessment In all the currently enacted legislation regarding assisted dying, when competency or capability is required, it is the responsibility of the attending physician and the consulting physician to have no reason to believe that the patient is incompetent. Dr J Garland expressed his concern over the difficulty in assessing competence in a patient, “In practice, I would need to have a conversation with somebody over perhaps a period of a number of hours spread over a number of days and I would need to ask a number of professional questions and I would need to consult, with their permission, with a number of people close to them who will give a different perspective on their behaviour, so I think you cannot assess the soundness of somebody’s mind without talking to their nearest and dearest, and their social support system, as well as to themselves. I think with the kind of dialogue that is clear and coherent, one can be reasonably certain and confident at the end of several days of interviewing and formal assessment that one has a picture, but this is not something that can be done in five minutes” (HK oral evidence). The UK ADTI Bill and the ODDA both only require the patient to be referred for psychological assessment if the attending or the consulting physicians consider the patient’s judgement is impaired. However the HL report on the ADTI Bill recommended that any future UK Bill should be considered to include a requirement for the applicant to undergo a psychiatric assessment regardless of the views of the attending or consulting physicians (HL report paragraph 254). In the Belgian legislation only the attending and consulting physician need be satisfied that the patient is capable, although in cases where death is not considered to be imminent a psychiatrist may be consulted (or a specialist in the patient’s disease) for confirmation that the due care requirements have been met. Neither the Dutch Act nor the Swiss law require psychological assessment. Dr J Garland quoted evidence from Oregon that 97% of psychologists confirm that they would not view a request for physician-assisted suicide as prima facie evidence of a mental disorder (Fenn and Ganzini 1999) (HK oral evidence). The Australian ROTI Amendment Act 1996 required a psychologist to examine the patient to confirm that they were not suffering from any treatable depression in respect of the illness. However, there is evidence from Australia to suggest that patients would withhold key information during psychiatric assessment because they saw it as a legislative hurdle that needed to be overcome (Kissane and Kelly 2000). Furthermore, it has been suggested that very few psychiatrists consider a single consultation sufficient to assess a patient. Ganzini and colleagues reported that only 6% of psychiatrists felt they could be a competent gatekeeper after a single assessment of a patient (Ganzini et al. 1996, quoted in Kissane et al. 1998).
10.7.5 Well Informed Decision All the legislation enacted concerning assisted dying, and the UK ADTI Bill, requires that the decision made by the patient or applicant is well informed. This involves the patient being informed of his/her diagnosis and prognosis
91 (this is not specified under Swiss law), and a discussion of the therapeutic alternatives available to the patient including but not limited to palliative care, care in a hospice and pain control. The UK ADTI Bill also requires the patient to be informed of the process of being assisted to die and the ODDA requires that the patient be informed of the risks and probable effects of the medication to be prescribed.
10.7.6 Declaration The Australian ROTI Act, the Belgian Act, the ODDA and the UK ADTI Bill all require that the patient make an official declaration of their wish to receive assistance to die in writing and signed by the patient. All of the above, bar the Belgian Act, also require the signing of the document to be witnessed by two independent individuals. These Acts or Bill all specify that the patient must be told that this declaration can be rescinded at any time and in any manner. The Dutch TLRAS Act does not require a written declaration except in the case of an incompetent patient who has made an advance directive and the Swiss law does not specify that a certain form of request or declaration is required. The UK ADTI Bill states that the declaration remains in place for six months after the patient has signed it unless it is rescinded in this time; this issue was also raised by Mec Vannin who suggested that any declaration may require reaffirmation after a certain time span has lapsed (Mr M Kermode, HK oral evidence).
10.7.7 Waiting Period 10.7.7.1 The Australian ROTI Act, the Belgian Act, the ODDA and the UK ADTI Bill specify a period of time that must elapse between the point when either the initial request or the declaration is made and the point where assistance is given to die. The ROTI Act required that there was a period of seven days between the initial request and the signing of the consent form, and 48 hours after the signing of the consent form assistance could be given. The Belgian Act specifies a waiting period only in cases where death is not imminent; in this case there should be a period of one month between the written request and the act of euthanasia. The ODDA requires that the prescription is written not less than 15 days after initial oral request and there must be 48 hours between receiving the written request and writing the prescription. The UK ADTI Bill specifies there must be 14 days between when the patient first informs the attending physician of the wish for assistance in dying and when assistance is given.
10.7.7.2 It has been suggested by the National Council for Hospice and Specialist Palliative Care Services (NCHSPCS) that it is the period after the signing of the declaration that should present the most significant time for reflection. This is because “it is possible that the period leading up to the signing of the declaration will become focussed heavily on process, as the patient and his professional carers seek to ensure that the Bill’s requirements have been complied with” (NCHSPCS, HL report paragraph 259). The importance of the waiting period was emphasised by Dr J Garland who said, “It seems very clear to me that such a very important decision [request for assisted dying] needs to be given time and space. It is, of course, extremely difficult to discuss this in detail, because the time available to patients facing death is sometimes very difficult to predict, but, I think, at a bare minimum, you would need a significant period of time for reflection and discussion”
92 (HK oral evidence). In response to questioning about changing will to live Dr J Garland illustrated that he has known people who are mentally competent and expressed a wish to receive euthanasia or assisted suicide later to change their mind and vice versa, “It is very common, in my experience, for people to change their minds both ways in this very difficult period” (HK oral evidence). Chochinov and colleagues examined the temporal stability of the will to live and its correlates in 168 terminally ill patients (mostly elderly patients in the terminal stages of cancer) in Canada. They found that the will to live is highly unstable among terminally ill cancer patients. Factors accounting for the variance in will to live changed as death approached; initially, anxiety was the most significant predictor of will to live, in later models depression replaced anxiety and in the final phase dyspnoea was the most important variable. They concluded that the demonstration of a sustained wish to die must be part of evaluation of any request for assistance to die (Chochinov et al. 1999). This illustrates the importance of a waiting period for the patient to reflect fully on their decision. If a waiting period between either the initial request or the signed declaration and the point when assistance is specified it must allow sufficient time for the patient to reflect on his/her decision but should not be so long as to unnecessarily extend suffering.
10.7.8 Advance Directives 10.7.8.1 The Belgian and the Dutch assisted dying Acts both make provisions for cases where patients have made advance directives. Under the Belgian Act all capable adults or emancipated minors can declare their wishes in writing for cases where they are unconscious or cannot express their will. They can designate one or more trusted adults who will inform the attending physician of the wishes of the patient. The advance directive must be in writing, drawn up in the presence of two witnesses, one of which must have no material interest in the death of the patient, dated and signed by the patient and the witnesses and if necessary by the trusted adults (provisions are made for cases where to patient is not able to write the document themselves). The Advance Directive should be maximum of 5 years old and can be revoked or changed at any time. Under the Dutch TLRAS Act, advance directives are recognised as legitimate forms of requests for euthanasia provided the patient was competent at the time of writing.
10.7.8.2 The General Medical Council (GMC) defined advance directives as “statements made by adults at a time they have capacity to decide for themselves about the treatments they wish to accept or refuse, in circumstances in the future where they are no longer able to make decisions or communicate their preferences. An advance statement cannot authorise a doctor to do anything that is illegal. Where a specific treatment is requested, doctors are not bound to provide it, if in their professional view it is not clinically appropriate.” (GMC withholding and withdrawing treatment guidelines 2002). In oral evidence to the HK Select Committee Mr P Bryden, speaking in a personal capacity, said “A clear statement about the general legal validity of these types of instructions made by Manx residents would, I think, be helpful to all approaching the end of their days, and who have anxieties about these matters”. The IOM Freethinkers told the HK Select Committee, “We would like to see legislation in the Isle of Man [for advance directives/living wills] including provision for a free national database for the
93 registration of living wills and their promotion through the DHSS (Department of Health and Social Services)” (Written submission, Ref. No. 104). The importance of understanding the implications of any advance directive was mentioned by Dr J Garland who said, “It would be very helpful for them [people who wish to make an advance directive] to have an independent counsellor or supporter who would discuss with them and their lawyers the implications of this, and for people to reflect on their dying in advance of the process” (HK oral evidence). The Research Officer for Life UK, Mr P Cusworth, told the HK Select Committee that they “would want to be very careful that the patient was fully aware of what he or she was consenting to and the likely implications that would take place if he or she did submit into such a vulnerable state”. 10.8 Consultation All enacted legislation regarding euthanasia or assisted suicide, and the UK ADTI Bill, require that the attending physician consults another independent physician regarding the conditions of due care and confirm the opinions of the attending physician. In the Netherlands a SCEN (Support Consultation Euthanasia Network) physician usually fills the role of the consulting physician. The Swiss law does not require that a doctor be consulted about assisted suicide at all, however the SAMS guidelines suggest that a physician who is going to assist a suicide consults with another person, but not necessarily a physician. The UK ADTI Bill specifies that the consulting physician should be practicing in the National Health Service (NHS), professionally qualified to make a diagnosis and prognosis regarding the patient’s illness and should be independent of the attending physician. The requirement of a psychological consultation and assessment is discussed in section 10.7.4. 10.9 Palliative Care The ODDA and the Belgian Act require that the patient is informed of palliative care possibilities and the UK ADTI Bill requires that a specialist in palliative care discuss the option of palliative care with the patient. In oral evidence to the HL Select Committee Lord Joffe confirmed that this consultation would not be a guaranteed offer of palliative care (HL oral evidence Q148). The Australian ROTI Act required that if the attending physician did not have special qualifications in palliative care then another physician with such qualifications had to inform patient of the availability of palliative care. 10.10 Conscientious Objection 10.10.1 The majority of legislation contains a clause relating to those who may have a conscientious objection to any of the processes in the Act. The exceptions to this are Swiss law and the Dutch Act, which contain no such clauses, however in both these cases accompanying guidelines state that no person is under any obligation to assist or participate with any of the procedures involved. The ODDA states that the physician is under no obligation to assist a patient’s suicide but he/she must transfer all relevant medical records on the request of the patient to the physician of the patient’s choice. The Belgian Act has a similar clause in that the attending physician must pass on the patient’s medical records to another physician designated by
94 the patient, furthermore the physician must inform the patient why he/she is not willing to assist and if this is a medical reason it should be recorded in the patient’s medical record. There was some controversy regarding the conscientious objection clause in the UK ADTI Bill. The first part of the clause was standard and stated that no person was under any duty to participate in any action authorised by the Act to which he/she had a conscientious objection. The second part of the clause stated that if an attending or a consulting physician had such a conscientious objection then “he shall take appropriate steps to ensure that the patient is referred without delay to an attending or consulting physician who does not have such a conscientious objection” (Clause 7(2) and (3)). The Joint Committee on Human Rights felt that this obligation to refer the patient to a physician that did not have a conscientious objection could be considered an infringement of conscience (HL report paragraph 32). Alternatively, the responsibility should be placed on the patient to find a physician without a conscientious objection.
10.10.2 The importance of a clause to provide for those with a conscientious objection to the legislation is indisputable, and it is an issue that was raised several times in the course of both the oral and written evidence submitted to the HK Select Committee. Miss B Critchlow, Director of Nursing Midwifery and Professional Development, Noble’s Hospital, told the committee that, “We talk about the rights and the autonomy of the patient and that is very important, but we also have to consider the rights and the autonomy and the well-being of the health care professionals that would be asked to practice this. There will be practitioners who would be willing to accommodate this legislation, I am sure, but there would be others who would not be”. Mec Vannin expressed their view that “No person should be pressured or induced to act against their own personal or professional ethics” (Mr M Kermode, HK oral evidence). In the written evidence concern was expressed about what provision there might be for those who have a conscientious objection and whether if a physician referred a patient to another physician due to the fact he felt he could not participate in the procedure, he would still feel that he has participated (section 8.2.3.24). 10.11 Insurance The Australian ROTI Act, the Belgian Act, the ODDA and the UK ADTI Bill include a Clause that ensures that insurance policies are not affect by requests for, or death by euthanasia or physician-assisted suicide. Only the ADTI Bill specifies that the policy must have been in force for twelve month as of the date of death for it to be protected under the Act. The Guernsey Social Security Authority has also confirmed that it would pay bereavement benefits in cases of euthanasia should the law in Guernsey regarding euthanasia be changed. 10.12 Next of Kin The Australian ROTI Act, the Belgian Act, the ODDA and the UK ADTI Bill all suggest that the patient notifies their next of kin of the request for assisted dying. However, none of the legislation makes it a requirement that the patient notify, or discuss their decision with, their next of kin.
95 10.13 Reporting 10.13.1 All existing legislation bases its reporting procedure on a post-event reporting system. Only the Belgian Act and the UK ADTI Bill specify a time before which the attending physician must submit reports to the appropriate commission of four and seven days respectively. It has been suggested that this system of post-event reporting may lead to under reporting. A study into reporting procedures in 1996 in the Netherlands reported that reasons for under reporting might be that physicians feel that the procedure is time consuming, incriminating or a breach of privacy. Alternatively physicians may feel that not reporting avoids the fuss of judicial inquiry, protects the patient’s relatives from judicial inquiry, honours a request from the patient’s relatives to be protected from a judicial inquiry, or they may not report out of fear of prosecution due to failure to fulfil the requirements of due care or they believe that assisted death is a matter between patient and doctor (van der Wal et al. 1996).
10.13.2 Documentation In general, the documentation required for reporting must demonstrate that the qualifying conditions or due care requirements have been met, document the oral and written, if applicable, requests for assisted dying from the patient, include any reports resulting from consultations and a description and quantity of the medication supplied or used. The ODDA allows the option of supplying these records to the Department of Human Services (DHS) or using a reporting form provided by the DHS. Regulations published in conjunction with the Australian ROTI Act included a checklist for the use of the physician in preparing the report file. The Belgian Act goes into the most detail regarding the format of the report. The Belgian reporting document is composed of two parts, part one is confidential and sealed, and the second part contains details of the patient’s medical condition, suffering, the nature of the request, any consultations and procedures followed and the manner of euthanasia.
10.13.3 Confidentiality There have been concerns expressed both in the oral and the written evidence that the confidentiality of patients and physicians in the IOM would be difficult to maintain. Miss B Critchlow told the HK Select Committee, “One of the challenges we have – and I think on the Isle of Man that challenge is even greater – is that we are a small community and to maintain the confidentiality of those who practice, who might practice assisted suicide or euthanasia, might be more difficult in a community like this. Protecting the anonymity of the patient, as well, might be more difficult in a community of this size, and I think those are things that we have also got to consider on the Isle of Man” (HK oral evidence). The same issue was raised by physicians in Oregon who were concerned about the confidentiality of themselves, the patient, and the patient’s family (Ganzini et al. 2000). 10.14 Regulation 10.14.1 The regulation of the practice of assisted dying varies according to jurisdiction, although the customary system is that the physician submits all the relevant documentation to a commission of some kind who establishes if all the due care requirements have been met. If the commission decides, by
96 majority vote, that the requirements have not been met then the case is referred on to a higher authority. Under the ODDA the physician reports to the DHS who review the report and have the authority to contact the physician for additional information, the DHS then reports any discrepancies to the Board of Medical Examiners (BME). The main body of the Dutch TLRAS Act deals with the establishment, composition and appointment of the five Regional Review Committees. These must consist of an uneven number of people including one legal expert who chairs the committee, one physician and one expert on ethical or philosophical issues. The committees can request additional information from physicians and make enquiries of the pathologist. In cases where the committee decides that the due care requirements have not been met the case is referred to the Public Prosecution Service. The Belgian Act requires that the physician reports to the Federal Commission of Control and Evaluation which consists of sixteen members, eight of which should be medical doctors, four should be professors of law or lawyers and four should be specialists in incurable illnesses. The commission should contain an equal number of Dutch and French speakers with both a Dutch and a French speaking president. If the commission decides that due care requirements have not been met then the commission may open the confidential part one of the report and request more details from the physician; if the commission still considers that the requirements have not been met then they refer the case to the Public Prosecution Service. Under the Australian ROTI Act the physician was required to report to the coroner who would then consider the report and could at any time report to the Attorney General on the operation or any matter affecting the operation of the Act. The UK ADTI Bill proposed to establish a monitoring commission, which would hold and monitor records. This would consist of one medical practitioner, one legal practitioner and one layperson having first hand knowledge or experience in caring for a person with a terminal illness. In cases where the commission decided that the qualifying conditions were not met, the case would be referred to the district coroner. Mec Vannin suggest for the IOM that “Should an act of assisted suicide take place under this regime, a full file would be passed to the coroner of inquests, who will review the evidence to satisfy himself that the procedures have been correctly followed. This being the case, there would be no need for an inquest. Only in the case of the coroner not being satisfied that all procedures have been correctly followed would there be need for an inquest” (Mr M Kermode, HK oral evidence).
10.14.2 An alternative reporting system was suggested in proposed legalisation by Luxembourg. This Bill stated that after obtaining a second medical opinion on the patient, the physician should address an independent commission regarding the request for euthanasia. A single public submission suggested that each request could be considered on a case-by-case basis (Ref. No. 179). A system like this would allow clear control over who was receiving assisted dying. 10.15 Discussion 10.15.1 There are issues raised in considering existing legislation that are not controversial and would not present problems for any future legislation. These issues include, for example, the restriction of the legislation to adults, the restriction of the legislation to Manx residents, and the consultation with a
97 second physician. Other issues require consideration of the debate resulting from either their enactment or their proposal.
10.15.2 The requirement of a qualifying patient to be terminally ill, or at least suffering from an incurable illness is a requirement in most legislation, except for Swiss law and the Dutch Act. The ODDA and the UK ADTI Bill require that the terminal illness would result in the death of the patient within a specified period of time. This raised the issue of the difficulty of accurate prognostication. The title of the proposed Manx Bill provides for an adult with a terminal or serious and progressive physical illness to apply for assisted dying. It has been suggested in oral evidence that the term ‘serious and progressive physical illness’ may be ambiguous and open to interpretation.
10.15.3 The requirement of the patient to be experiencing suffering of some kind is commonly in legislation of this kind. However, this is generally the patient’s subjective impression, and suffering can be both physical and psychological. It also may have to be assessed by the attending physician whether it is feasible that the patient is suffering to the extent that they express.
10.15.4 All legislation passed regarding assisted dying in all the jurisdictions requires that the patient explicitly consents to the act. This consent can be given at the time, or in some cases, by means of an advance directive. Similarly, all legislation either requires that the patient is competent at the present time, or that they were competent at the time they wrote an advance directive. However, the competency of a patient maybe compromised if they are suffering from depression or any other psychological impairment. This raises the issue of a psychological assessment and whether such an assessment should be conducted in all cases of requests, or only in cases where either physician believes that the patient is not competent. The efficacy of psychological assessments was also debated as the patient may regard them as obstacles to overcome and therefore obscure information, also some psychologists do not believe that they could effectively assess a patient’s competency in the course of a single session.
10.15.6 The inclusion of a clause that makes provision for those with conscientious objections to any of the procedures in the legislation is not controversial. However, it should be ensured that any subsequent action required of the physician with the conscientious objection would not in itself also contravene the rights of the physician. The duty to find a physician without conscientious objection should be on the patient; whether this would be a problem was examined in section 6.3.2.
10.15.5 One aspect of the Belgian legislation may be particularly applicable in the IOM with respect to anonymity. The two-parted Belgian registration document has an anonymous first part which may only be consulted if the commission decides that the requirements of due care were not met. Several suggestions have been made that it would be difficult to maintain the anonymity of patients and physician in the IOM involved in any assisted dying practices, and therefore a system similar to the Belgian registration document may be a solution to this.
98
10.15.7 A final point to consider is the possible forms of the regulatory system for the practice of assisted dying. All existing systems operate on a post-event reporting system to a regulatory commission of some kind or the coroner. The possibility of a different regulatory system whereby a committee considers each case individually before assistance to die is given has been discussed. This latter type of regulation may resolve any problems of under-reporting or non-compliance with the regulations. 11. Pain Relief & Double Effect Medication 11.1 Introduction The proposed Bill in the IOM includes the condition that the Bill would make provision for a person suffering from a terminal or serious and progressive physical illness to receive pain relief medication. This is similar to Clause 15 of the UK ADTI Bill which states that “a patient suffering from a terminal illness shall be entitled to request and receive such medication as may be necessary to keep him as free as far as possible from pain and distress”. This provision in the ADTI Bill has proved controversial. Lord Joffe explained to the HL Select Committee the reasons for originally including Clause 15, “There is clear evidence that many patients do not get sufficient pain relief, for any one of a number of reasons. Research published by CancerBACUP this year [2004] demonstrates that a large number of patients are not even consulted about their pain relief. Research from the Nuffield Trust last year [2003] found that a considerable number of patients actually suffered unnecessary pain which could have been prevented…there is a further factor which is also very relevant to this clause, and that is that it is clear that there are a number of doctors who are concerned about using the double-effect principle in order to relieve the pain of their patients because they are frightened that they may be prosecuted” (HL oral evidence Q70). In this section the arguments surrounding adequate pain control are examined and the connected issue of double-effect medication is explored. It will be seen that these are separate but nonetheless related issues to euthanasia and assisted suicide, and should be considered in any investigation into them. 11.2 Pain Control 11.2.1 Prof. A Johnson, a retired Professor of Surgery and former teacher of medical ethics, informed the HK Select Committee about the approaches used for pain relief; “In drug terms, the use of different types of drugs, not just increasing doses of one particular drug, like morphine, which we always think about in pain relief, but the use of other types of drugs… I think the thing that really has come is looking at the whole patient. It is not just about giving a drug for pain relief and that is the message that has come through: the patient’s social, spiritual and mental understanding…We are now realising that there are a lot of other drugs and anxiolitics as well as drugs…Often you do not need nearly as much of the painkiller if you give a drug that helps with the anxiety as well... Local-anaesthetic relief of pain has come in and uses of very skilled things like epidural blocks and things like that and this keeps the person fully conscious and not dampening their activity as well”. The developments in and approaches used for pain relief in the IOM by Hospice Care were detailed by Dr B Harris speaking on behalf of the IOM Medical Society; “Skills in managing pain have developed an awful
99 lot, really, in the past 10 or 20 years, I suppose. There have been a number of reasons for that. One of the biggest reasons, really, is that the drugs companies have actually come up with a whole variety of products, which can be used in different circumstances. So, whereas perhaps 20 years ago there would only be one medication that could be given in a certain way, now our management plans for pain control are very much tailored to the individual patient, depending on their special circumstances. Of course, I would not like you to get the impression that pain relief is just about medication. The perception of pain by the patient has holistic attributes, so there are physical issues in that, but there are also psychological issues, social issues, and indeed spiritual issues, and the holistic practitioner, working with their team, would attempt to address each of those areas. There are also non- drug interventions such as, for instance, aromatherapy, which we do an awful lot of at the Hospice. It plays a big part in making people comfortable. But there are other things like the use of acupuncture or TENS machines, so there is a whole variety. With some of our more challenging patients, we have to ask for help from the anaesthetic department at the hospital… What I say to patients now is that pain is not really the biggest problem any more, because it is one of the symptoms that we can deal with really quite well. There are, in fact, more difficult symptoms to deal with than pain; for instance, breathlessness would be one” (Dr B Harris, HK oral evidence).
11.2.2 There have been many claims that pain in terminally ill patients is not satisfactorily managed. Many studies examining this have been in the field of cancer patients receiving palliative care. An early example of this type of study is a national study of cancer patients conducted in the USA, which examined patients with metastatic cancer at 54 treatment locations affiliated with the Eastern Cooperative Oncology Group. It was found that 250 of the 597 patients with pain were not given adequate analgesic therapy; this corresponds to 42% of patients in pain (Cleeland et al. 1994). Another study in 1998 evaluated 13,625 patients with cancer in nursing homes in five states in the USA and found that one in four patients with daily pain were not receiving any analgesic (Bernabei et al. 1998, quoted in Johnson et al. 2005). A recent analysis of 190,769 residents with cancer in USA nursing homes in all states bar Alaska and Nebraska found that 51.3% of the patients experienced persistent severe pain and 8.7% had daily pain that was excruciating at times (Johnson et al. 2005). In oral evidence given to the HK Select Committee Ms D Annetts of the Voluntary Euthanasia Society (VES) stated, “…even the Royal College of Physicians found, in 2000, that for 20% of patients experiencing pain in cancer, that pain cannot be relieved adequately, and that is even within palliative care service. So, I do not think that we should think that pain relief can cure everything; it can go so far, but not all the way”.
11.2.3 Speaking for Hospice Care in the IOM Mr J Quinn told the HK Select Committee that Hospice Care “do not accept that pain and suffering cannot be effectively controlled to an acceptable level. We are not, however, suggesting that a position would be achieved where there will be an absence of pain, but we believe we can get it under control and the patient to the stage where they are content to live their life until they die. In my relatively short time at the Hospice I can certainly say I have not come across a situation where this has not been achieved for a patient under our care”. Mr Quinn acknowledged that a patient might be slightly sedated as part of their pain
100 control regime, but that this sedation is often temporary as the patient becomes accustomed to the regime (Mr J Quinn, HK oral evidence). In reference to pain relief in Hospice Care, Dr B Harris considered that “an awful lot” could be done for pain in 100% of cases (HK oral evidence). Speaking as a medical professional, Prof. A Johnson judged that less than 1% of patients experienced pain that could not be relieved, and could only think of one or two examples where he felt they could not relieve this pain in the last ten years (HK oral evidence).
11.2.4 The Ven. B Partington OBE, Archdeacon, spoke from personal experience as a clergyman, “There have been such advances in pain control that there are very few situations where pain cannot be controlled. I know, from my personal experience of being a clergyman over 40 years ago, the time that one spent with people in very severe pain and the difference to today. The nights that I have spent – and others like me – with people who were dying and whose pain was uncontrolled; today that very, very, very rarely happens, and that is something, I believe, that we have to take significant note of” (HK oral evidence). 11.3 Double Effect Principle 11.3.1 The doctrine of double effect has its origins in Catholic theology; it draws the distinction between impermissible and permissible intended consequences. There are four requirements that are usually involved in the doctrine. Firstly, the action itself (as distinct from its consequences or effects) must not be inherently morally wrong. Secondly, the intention must be to produce the good effect. Thirdly, the good effect must not be brought about via the bad effect. Finally, there must be an appropriate balance between the good and the bad effects, such that the good effect must outweigh the bad (Huxtable 2004). The crux of the principle lies in the intentions of the person acting. Two actions can be the same in all respects, including their outcomes, but if they differ in the agent’s intentions then they are two different actions, both morally and legally (Gillon 1999).
11.3.2 The doctrine has been invoked in the practice of medicine, particularly in the administration of opioids and also sedation and the withdrawal of life- sustaining treatment. It received legal expression in the trial of Dr John Bodkin Adams in 1957. Judge Devlin summing up the case said, “If the first purpose of medicine, the restoration of health, can no longer be achieved, there is still much for a doctor to do, and he is entitled to do all that is proper and necessary to relieve pain and suffering, even if the measures he takes may incidentally shorten life. This is not because there is a special deference for medical men but because no act is murder which does not cause death. We are not dealing here with the philosophical or technical cause, but with the commonsense cause. The cause of death is the illness or the injury, and the proper medical treatment that is administered and that has an incidental effect on determining the exact moment of death is not the cause of death in any sensible use of the term” (Devlin 1985, quoted in Huxtable 2004). Therefore a health professional can administer analgesics even if they might incidentally cause death, provided that the intention is palliative rather than directed at causing death (Huxtable 2004).
101 11.3.3 Dr Bodkin Adams was a GP who was charged with the murder of an 81-year old patient who was suffering from cerebral arteriosclerosis and the aftermath of a stroke. The prosecution argued that Adams must have intended and subsequently caused her death given the high quantities of barbiturates, diamorphine and morphine administered. In response Adams argued that his intention was to relieve pain and not cause death. Adams was found not guilty and the prosecution consequently decided not to try Adams over the death of another patient. At the outset the prosecution was brought because Adams had inherited under the wills of two patients, however the judge considered the possessions he inherited to be too paltry a reward to risk being charged for murder. However it was revealed after Adam’s death that he had actually inherited under around 138 wills in the course of his practice. Dr R Huxtable, a lecturer in Medical Law and Ethics at the University of Bristol, told the HK Select Committee “Adams was a serial killer who introduced the doctrine of double effect, which is supposedly about pure intentions, into English criminal law”.
11.3.4 Other cases relevant to the principle of double effect medication include that of Dr Cox. In 1992 Dr Cox was convicted of attempted murder of a patient with arthritis after he injected her with potassium chloride when analgesics failed to relieve her pain. He received a suspended prison sentence, and was not struck off the General Medical Council (GMC) register although conditions were placed on his practice, including that he undergo training in palliative care. Dr David More, a GP based in Newcastle, told the local media that he had killed 300 patients throughout the course of his career, and that he would be prepared to defend that, if he was prosecuted. However, in Court his defence was of the doctrine of double effect, and he was acquitted in 1999 (Dr R Huxtable, HK oral evidence).
11.3.5 There are conflicting views as to the extent of the practice of double effect medication. In oral evidence to the HK Select Committee Prof. J Harris of the Institute of Medicine Law and Bioethics at Manchester University said, “I think that it is not true that it is unethical for medical practitioners to assist in the death of individuals. They do it all the time. On any occasion when analgesics, pain-killers, are given in a life-shortening dose, which they very standardly are, doctors are doing precisely that”. However, Mr J Quinn informed the HK Select Committee that “It is the view of Hospice Care and those involved in palliative care medicine, that medication given in the terminal stages of life does not hasten death. The patient dies as a result of the progression of the underlying condition. We do not prescribe medication with the intention of hastening death”.
11.3.6 Legislation Dr R Huxtable speaking to the HK Select Committee said that “There appear to be difficulties with a number of cases in which that doctrine has been relied upon. A number of doctors in issue, it would seem, really, on a closer analysis of those cases, did not have the pure intention, and, yet, they were still enabled to invoke this doctrine of double effect”. As a solution to uncertainties of formulation and application of the double effect principle Dr R Huxtable suggested that legislation should be enacted that “where a responsible medical professional administers treatment that it is clearly designed solely to relieve pain, suffering and/or distress; in accordance with
102 responsible medical practice; and with the intention to relieve pain, suffering and/or distress and not to kill the patient he or she shall not be guilty of an offence. The provision could be supported by explanatory material, such as a Code of Practice or other quasilegal guidance”. Dr J Garland, a Clinical Psychologist with the Oxfordshire Mental Healthcare Trust, also expressed the view that the law as is stands is not clear on the principle of double effect and that legislation with appropriate safeguards could clarify the situation (HK oral evidence). 11.4 Discussion There is contrasting evidence as to whether or not some terminally ill patients receive effective management of pain. Many studies maintain that pain relief at the end of life, especially in cancer patients, can be inadequate. Whether or not this is the case is almost extraneous to the argument as to whether or not a clause related to pain relief medication should be included in a Bill regarding assisted dying specifically. In response to Clause 15 in the ADTI Bill, the British Medical Association (BMA) stated it was “unnecessary and plays on public fears about the possibility of intolerable or unrelieved pain at the end of life”. The National Council for Hospice and Specialist Palliative Care Services (NCHSPCS) considered that “the administration of pain relief is well- established in clinical practice and need have no bearing on or connection to PAD (physician-assisted-dying). It is unprecedented that a therapeutic course of action requires an act of legislation”. In response to the reaction to Clause 15 Lord Joffe has proposed to withdraw such a clause from any future Bill on assisted dying (HL Report paragraph 266) and the HL Select Committee recommended that “any new Bill should not include provisions to govern the administration of pain relief by doctors” (HL report paragraph 269 (ix)) (see Appendix 6 for recent developments with an ADTI 2005 Bill). 12. Closing Statement As set out in the introduction to this report, the House of Keys has already voted in favour of giving Mr Rimington leave to introduce a Bill on the subject matter of this report. The purpose of this Report was not to draw specific conclusions; rather the aim was to present a balanced assessment of the issues associated with the legalisation of euthanasia and or assisted suicide and to evaluate all the evidence considered by the Committee. The Report will therefore assist Members of the House of Keys to come to an informed decision, when Mr Rimington brings such a Bill before the House, and allow further considerations of the matter.
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