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Testimony Before the Senate Standing Committee on Legal and Constitutional Affairs by Raphael Cohen-Almagor Professor and Chair in Politics, University of Hull, United Kingdom

2 February 2021

Thank you for your invitation to present my views on end-of-life today.

My name is Raphael Cohen-Almagor. For the past 30 years I have been studying end-of-life concerns. Ethically speaking, I think patients should be able to receive medical aid at the end of life. This should be done in the most attentive and careful way.

I embarked on end-of-life research when I was at the University of Oxford. As we are talking on matters of life and death, I believed, indeed I still do believe, that a fieldwork is a must. I thought it would be unprofessional and irresponsible on my part if I were to recommend anything that is solely based on desk research.

During my investigation, I therefore visited dozens of medical research centers in nine countries: The United Kingdom, Israel, the United States, Canada, Australia, New Zealand, The Netherlands, Belgium and Switzerland. I met with physicians, nurses, social workers, psychologists, psychiatrists, palliative care specialilsts, politicians, patients and their families, medical ethicists, lawyers, human rights activists, leaders of patients’ rights associations, directors of right-to-die societies and social scientists. NGOs such as Care and Alliance, The World Federation of Right to Die Societies, Eutanasie Stop, IRIS – Institute for Research and Development on Inclusion and Society, Euthanasia Prevention Coalition, Living and Dying Well, No Less Human, and Care Not Killing have benefited from my research.

My research has very practical implications. I co-drafted draft the Israeli Dying Patient Law.1 My recommendations have directly shaped Israel’s policy on organ transplants. In 2014, they were adopted by the Israel Ministry of Health. I was involved as a consultant to many end-of-life legislative initiatives in Australia, Belgium, Britain, Canada, Israel, New Zealand, South Africa and the USA. My researched has been discussed in the Israeli and Belgian parliaments as well as quoted by the Israel Supreme Court. In 2014, I was asked by some concerned Canadian citizens and patients’ associations to write to ministers about Bill 52. I had correspondence with Hon Peter MacKay, Justice Minister and Attorney General of Canada; Mr. Bertrand St-Arnaud, Minister of Justice and Attorney General of Quebec, and with Dr. Réjean Hébert, Minister of Health and Social Services. I pleaded with them that end-of-life policy should include ample safeguards to prevent abuse. I also implored them to study different models, in addition to the Dutch model, before they reach a decision. [R11, R12, R14].2 I was very sorry to see that the Canadian legislators opted for Medical Assistance in Dying which comprises both euthanasia and physician-assisted suicide. I do not think that the practice of euthanasia serves the patient’s best interest. I have raised a clear voice against euthanasia in my letters to the ministers and frequently in my writings on the matter. [R5, R8, R9, R12].

1 Dying Patient Law (December 15, 2005). 2 R=Reference to my writings, in the box below. 2

With the advance of technology and longevity of life, stronger opposition to medical paternalism and greater emphasis on personal autonomy, more and more people wish to decide their time of death. Philosophically speaking, a strong ethical argument can be made for enabling patients to decide the moment of their death. Liberals perceive this as a basic human right. Different considerations come into play: (1) The autonomy of the patient; (2) the dignity of the patient. These must be balanced against no less important considerations: 93) the duty to prevent abuse, and (4) state duty to protect vulnerable populations.

Close examination of end-of-life policies in the nine countries that I have studied until now brought me to believe that the State of Oregon has been more successful than other countries to find the right balance between the said conflicting considerations. [R11] In my book, The Right to Die with Dignity (2001) [R8], a product of nine years of research and thinking, I explained what end-of-life policy is most suitable for liberal democracies. The theory that I developed in this book and subsequent writings on the right to die with dignity weighs patients’ autonomy and good doctoring at the end of life. It demonstrates the power of law to shape policies [R2] as well as its limitations.[R1, R6]. My second book, Euthanasia in the Netherlands: The Policy and Practice of Mercy Killing (2004) [R9], exposes the abuse of the euthanasia practice in The Netherlands. Policy is for the entire society, not for specific cases. Indeed, policy might affect specific cases and disservice them, harming their best interest. I am unable to endorse such a dangerous policy. A fine line distinguishes between moral reasoning and policy making. I am unable to adhere to abstract moral reasoning while ignoring facts.

Thereafter, I pursued research in Belgium and became even more worried upon hearing more stories about abuse, putting patients to death without their consent, abusing the system that allows end-of-life practices in accordance with lax procedures that could be exploited by people for various reasons which are against the patients’ best interest. Too often, patients who should have received better care were instead put to death. At present, together with Swiss and American scholars I am researching the situation in Switzerland, the only country that practices assisted suicide (to be distinguished from physician-assisted suicide).

Key research finding: Potential for abuse A key aspect of my research is concerned with safeguaring patient’s rights and interests. [R5]. In a significant number of cases, physicians have shortened patients’ lives without their consent [R3]. There have been a number of cases where “Physicans Playing God” have abused their position and authority to make decisions that are not in the patients’ best interests [R1-R4]. Also, end-of-life care is often compromised due to economic considerations and shortage of resources [R2]. I criticized the Belgian Society of Intensive Care Medicine Council statement paper on the administration of sedative agents with the direct intention “of shortening the process of terminal palliative care in patients with no prospect of a meaningful recovery”.3 Guidelines and adequate control mechanisms are necessary to prevent abuse of power and to facilitate trust conferred on physicians to heal, support and provide care for people when they are most needy and helpless.4 Medical records should include documentation relating to the medical condition, patients’ expressed wishes, the

3 J-L Vincent, “Piece” (sic) of mind: End of life in the intensive care unit Statement of the Belgian Society of Intensive Care Medicine, J. of Critical Care, 29(1) (2014): 174-175. 4 UNESCO Universal Declaration on Bioethics and Human Rights (2005). 3 decision-making process, discussions with the patient and/or her loved ones, the palliation medication that was administered, the use or lack of use of artificial hydration and nutrition, and the effects of the intervention [R3].

Key research finding: The importance of maintaing trust between physicians and patients Good doctoring requires good communication. Patients should feel they are in good hands, and that the physician will protect and promote their best interests. I have argued that physicians should not offer euthanasia to patients. If patients wish to have euthanasia, they should initiate such a conversation. The argument is that physicians’ initiation of euthanasia might foster a sense of abandonment on the part of the patients, compromise the voluntariness of the request required by the euthanasia Guidelines, exert pressure on patients to die, and undermine seeking alternative treatments short of death, like good palliative care. Professional ethics prescribes that emphasis be put on the procedural requirement that the patient – not the physician – should raise the issue. [R10].

Key research finding: The importance of palliative care At times the patient’s decision might be influenced by severe pain, and therefore the role of palliative care can be, and is, crucial. The attending physician should inform the patient of all feasible alternatives, and s/he should consult a palliative care specialist who will inform the patient about relevant measures to help the patient cope with pain and suffering, including comfort care, hospice care and pain control. Palliative care refers to the active, comprehensive and total care of patients whose disease is not responsive to curative treatment, where maintaining the control of pain and other sources of suffering (eg, anxiety, psychological, social and spiritual problems) is paramount. Palliative care is action by the medical community to optimise the comfort, function, relationships, healing, dignity and preparation for the death of the person, who has life-threatening illness, and their family.5 The Oregon statute requires that the attending physician explores, together with the patient, all feasible alternatives for treatment, including comfort care, hospice care and pain control. [R11, R15].

Key research finding: Prohibition on terminal sedation There should be complete opposition to the practice of terminal sedation. [R15]. In terminal sedation often the patients are not aware that active steps are taken to sedate them till death and that they will die at the end of the sedation journey, and they do not consent to the practice. Terminal sedation accounts for nearly 10% of all deaths in Flanders.6 A survey of end-of-life decisions made by Flemish doctors in 2007 has found that in nearly 80% of cases that the authors labelled terminal sedation there was no explicit request from the patient. The doctor explicitly intended to end the life of the patient in nearly 22% of terminal sedation cases. The European Association for Palliative Care rightly recommended framework for the use of sedation in palliative care included consent in its guidelines.7 Its guidelines instruct that there should be no intention of causing or hastening death. The Association rightly regards such as intention as abusive. It explicitly says: “Abuse of sedation

5 A.S. Kelley and D.E. Meier, “Palliative Care – a shifting paradigm”, N Engl J Med, 363 (2010): 781–782; T. Pastrana, S. Jünger, C. Ostgathe et al., “A Matter of Definition – key elements identified in a discourse analysis of definitions of palliative care”, Palliat Med, 22 (2008): 222–232.

6 J. Deyaert J., K. Chambaere, J. Cohen et al., “Labelling of end-of-life decisions by physicians”, J. Med Ethics, 40(7) (2014): 506. 7 N.I. Cherny, L. Radbruch and The Board of the European Association for Palliative Care, European Association for Palliative Care (EAPC) recommended framework for the use of sedation in palliative care, Palliative Medicine, 23(7) (2009): 581-93. 4 occurs when clinicians sedate patients approaching the end of life with the primary goal of hastening the patient’s death”.8

Key research finding: Advance directives (ADs) The research has evidenced that Advance Directives (ADs) are often made without an opportunity for full informed consent. For example, in the USA, ADs might be utilized by medics against the patient’s best interests to save costly resources. The research shows that ADs have not fulfilled their promise of facilitating decisions about end-of-life care for incompetent patients.[R4] Many legal requirements and restrictions concerning ADs are counterproductive: despite their benevolent intentions, they have created unintended negative consequences, against patients’ wishes.[R7] If ADs have to be used, they should be as clear and precise as possible. Open interpretations and speculation should be avoided, as they might be detrimental to the patient’s best interests.[R1] Extreme caution is required when ADs of patients with dementia are concerned, as they are no longer able to formulate clear, voluntary, well-considered, and sustainable end-of-life requests.[R4, R7]

Key research finding: The paradox of dementia Dementia poses a paradox. We should insist that only competent, autonomous people may have the option to decide the moment of their death when, for them, life is no longer worth living, when it is no longer life in earnest. They do not wish to be euthanized prematurely but at some point in the future. Upon reaching that point, people are no longer competent and autonomous, and at that point often there is no clear indication that they wish to die. It is plausible to assume that — like the victims of physical traumas— patients with dementia accommodate to the new circumstances and may have changed their priorities and find meaning in other, even mere experiential interests. Thus, performing euthanasia prematurely is a shame because it cuts life in earnest. Performing euthanasia at a later stage of dementia upon advance directives might not be relevant to the present condition and, indeed, might negate the patient’s present wishes. Either way, euthanasia of patients with dementia is thus morally wrong.[R4] The dementia paradox cannot be solved by euthanasia. It needs to be addressed by more care, compassion, and good doctoring. The medical team has a crucial part to play in promoting quality of care from diagnosis until the last stages of dementia, through assessment of changes in cognitive functioning—memory, day-to-day functioning, depression, fears, communication difficulties, and behavior—alongside identification and treatment of symptoms.

Table 1. Euthanasia of patients with dementia Stage Autonomous Suffering Required Providing Euthanasia consent care Euthanasia –Ethical (Time) aspects

1 + + + Premature Problematic

2 - ++ ++ Questionable Problematic

3 - +++ +++ Timely Problematic

8 Ibid: 582. 5

Key research finding: Children require extra protection The first medical duty is Do No Harm. Granting minors the ability to end their lives is problematic because we mature intellectually before we mature socially or emotionally. Issues of such momentous significance, of life and death, are ethically challenging. Given the physical, emotional, social and financial dependence of minors on others, given their young age and lack of experience in dealing with illness and pain, given their difficulties in making grave decisions, it is doubtful that young minors are able to make autonomous and voluntary decisions.

Studying the situation in Belgium, I concluded that the option of pediatric palliative care should be exhausted before proceeding to euthanasia, and that psychological counselling be made available to both children and guardians. It is further argued that the law should explicate the age of those who may ask for euthanasia to adolescents (14 +). Disregarding age makes a simplistic and questionable policy. The law should insist on consensus between child and parents/ guardian/s and on providing palliative care. [R6]

Key research finding: The role of the patient’s beloved people The research highlghts that the people around the patient’s bed at the end-of-life are not necessarily blood relatives.[R7, R16] Caution is required in incidents when the best interests of the patient’s family members contradict the patient’s best interests. Sometimes patients’ lives are shortened because the family is unable to cope with the situation. The research on who defines patients’ best interests (patients, medical staff, people around patient’s bed), discusses potential conflicts of interest and raises awareness of the consequences of emotional draining that is often the result of caring for terminal patients.[R3]

Key research finding: Organ donations at the end of life The research supports the rights of elderly patients. It shows that age should not serve as the decisive criterion in decisions on the allocation of organs. While age is an important variable in determining a patient’s medical condition, there are other — no less important — factors that influence one’s health. There are people in their 80s whose health is generally good, while there are people in their 40s in very poor health. The age criterion is too simple, too general, too sweeping. It provides too convenient an answer to a tough and troubling question. The research also shows that there is a correlation between euthanasia and organ donation in Belgium. Similar concerns were recently raised in Canada. In Belgium, Euthanasia donors accounted for almost a quarter of all lung donors.[R2] The concern is that vulnerable patients might be driven to consider euthanasia for the purpose of organ procurement, and that the planning of the death procedure might be premature, and against the wishes of the patient.

Key research finding: There is something intoxicating about euthanasia A close study of both The Netherlands and Belgium reveals similar phenomena: Strong liberal lobbies that support euthanasia; mobilizing the media and parliament in support; silencing of opposition; airing arguments about justice, equality and non-discrimination in order to expand the bounds of euthanasia; strong influence of ideologues for a cause; tagging opposition as “clowns”, “religious fundamentalists”, “illiberal elements in society”; inability to discuss the problem of abuse. Instead, pushing the nagging issues and questions under the carpet.

Looking at the short history of the euthanasia laws, policy and practice, in Belgium and also in the Netherlands may lead us to think that there is something intoxicating about the practice that blinds the eyes of decision-makers, leading them to press forward further end-of-life practices without 6

paying ample attention to caution. In Belgium, the godfather of euthanasia is the Chairperson of the control and monitoring committee that is tasked to ascertain that the policy is practiced correctly without abuse. One can hardly think of a more staggering conflict of interest.

The Belgian Euthanasia Act was passed only in 2002, and the country is still in the early learning stages. What is disconcerting is the fast move to press forward further end-of-life practices without paying ample attention to caution. One cautionary barrier after the other is removed to allow greater scope for euthanasia. [R2] The scope of tolerance toward the practice is enlarged so that, as yesterday’s red light becomes obsolete today and as one qualification is removed, practitioners and law makers are already debating a further step and other groups (patients who are tired of life, children, patients with dementia, patients who suffer from psychological problems, incompetent patients, non-terminal patients) to be included within the more liberal euthanasia policy as if the restrictive logic behind the Euthanasia Act were no longer valid. This is quite astonishing because human lives are at stake. What is required is a careful study, accumulation of knowledge and data, addressing the above concerns, learning from mistakes, and attempting to correct them before rushing in a frenzied fashion to introduce more liberal ways to euthanize patients. Haste makes waste.

Conclusion I think that the Dutch (and Belgian) model is an erroneous model to pursue.

A far better model is the Oregon model that supports physician-assisted suicide (PAS) but refrains from endorsing euthanasia.9 [R11] Thus, the final act lies with the patient, not the physician.

I call for socially responsible terminology and policies [R3, R6]; and I raise concrete concerns regarding trust between physicians and patients if physicians offer euthanasia to their patients. We should help patients to the best of our abilities, addressing their concerns, listening to their reasoning.

Attached is a set of guidelines which should be considered. This set integrates Lord Falconer’s Bill with pertinent guidelines that were adopted in Oregon, where physician-assisted suicide is legal,10 in the Netherlands11 and Belgium12 where euthanasia is legal, in Switzerland where assisted suicide

9 THE OREGON DEATH WITH DIGNITY ACT, https://www.oregon.gov/oha/ph/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Documents/statu te.pdf 10 Oregon Death with Dignity Act (1997), https://www.oregon.gov/oha/PH/ProviderPartnerResources/Evaluationresearch/deathwithdignityact/Pages/index.aspx 11 Termination of Life on Request and Assisted Suicide (Review Procedures) Act, The Netherlands (April 1, 2002). 12 Belgian Act on Euthanasia, Chapter II, Section 3, no. 1. 7 is practiced,13 and in the Northern Territory of Australia,14 where physician-assisted suicide was legal for a short period of time. The proposed set of guidelines also relates to my experience as a member of the public committee that was set up by the Israeli Health Ministry to draft the Dying Patient Law (2005).15

This is a very practical opinion piece. I have explained the reasons for physician-assisted suicide and for the need to support patients who express a wish to die at the last stage of their lives elsewhere.[R8, R12] This set of guidelines for physician-assisted suicide is geared to serve the best interests of patients while preventing potential abuse of the practice so as to ensure that a new law will not be detrimental to providing patients with good care at the time when they need it most.[R3]

Also attached a list of my publications in the field of medical ethics. The Table below includes my publications that are referenced in this testimony.

References to the research [R1] R. Cohen-Almagor, “Euthanasia Policy and Practice in Belgium: Critical Observations and Suggestions for Improvement”, Issues in Law and Medicine, 24(3) (Spring 2009): 187- 218.

[R2] R. Cohen-Almagor, “First Do No Harm: Pressing Concerns Regarding Euthanasia in Belgium”, The International J. of Law and Psychiatry, 36 (2013): 515-521.

[R3] R. Cohen-Almagor, "First Do No Harm: Shortening Lives of Patients without Their Explicit Request in Belgium", J. of Medical Ethics, 41 (2015): 625–629.

[R4] R. Cohen-Almagor, “First Do No Harm: Euthanasia of Patients with Dementia in Belgium”, Journal of Medicine and Philosophy, 41(1) (2016): 74-89.

[R5] R. Cohen-Almagor, “Assisted Dying Bill for England and Wales”, in Michael Cholbi (ed.), Euthanasia and Assisted Suicide: Global Views on Choosing to End Life (Santa Barbara, CA: Praeger, 2017): 29-44.

[R6] R. Cohen-Almagor, “Should the Euthanasia Act in Belgium Include Minors?”, Perspectives in Biology and Medicine, 61(2) (Spring 2018): 230-248.

[R7] R. Cohen-Almagor, “The Role of the Patient’s Family, Surrogate and Guardian at the End of Life”, European Journal for Person Centered Healthcare, 7(3) (2019): 454-465.

13 Roberto Andorno, “Nonphysician-Assisted Suicide in Switzerland”, Cambridge Quarterly of Healthcare Ethics 22 (2013): 246–253; G. Bosshard, S. Fischer and W. Bar, "Open Regulation and Practice in Assisted Dying – How Switzerland Compares with the Netherlands and Oregon," Swiss Medical Weekly 132 (October 12, 2002): 527–534; Georg Bosshard, “Assisted Suicide and Euthanasia in Switzerland”, BMJ 327 (July 5, 2003): 51-52; Stephen J. Ziegler, “Collaborated Death: An Exploration of the Swiss Model of Assisted Suicide for Its Potential to Enhance Oversight and Demedicalize the Dying Process”, J. of Law, Medicine and Ethics 37(2) (summer 2009): 318-330; Nicole Steck, Christoph Junker, Maud Maessen, Thomas Reisch, Marcel Zwahlen and Matthias Egger, “Suicide Assisted by Right-to- die Associations: a population based cohort study”, International J. of Epidemiology 43(2) (2014): 614-622. 14 Northern Territory of Australia, Rights of the Terminally Ill Act 1995, http://www.nt.gov.au/lant/parliamentary- business/committees/rotti/rotti95.pdf 15 Dying Patient Law, Israel (2005). 8

[R8] R. Cohen-Almagor, The Right to Die with Dignity: An Argument in Ethics, Medicine, and Law (Piscataway, NJ.: Rutgers University Press, 2001). This is my most important publication on the subject, the result of nine years of research and thinking.

[R9] R. Cohen-Almagor, Euthanasia in the Netherlands: The Policy and Practice of Mercy Killing (Dordrecht: Springer-Kluwer, 2004).

[R10] R. Cohen-Almagor, “Should Doctors Suggest Euthanasia to Their Patients? Reflections on Dutch Perspectives”, Theoretical Medicine and Bioethics, Vol. 23, Nos. 4-5 (2002): 287-303.

[R11] R. Cohen-Almagor and Monica G. Hartman, “The Oregon Death with Dignity Act: Review and Proposals for Improvement”, Journal of Legislation, Vol. 27, No. 2 (2001): 269- 298.

[R12] R. Cohen-Almagor, “An Argument for Physician-Assisted Suicide and Against Euthanasia”, Ethics, Medicine, and Public Health, Vol. 1, Iss 4 (2015): 431-441.

[R13] R. Cohen-Almagor, “Euthanasia Policy and Practice in Belgium: Critical Observations and Suggestions for Improvement”, Issues in Law and Medicine 24(3) (Spring 2009): 187- 218.

[R14] R. Cohen-Almagor, “Euthanasia and Physician-Assisted Suicide in the Democratic World: Legal Overview”, New York Int. Law Rev. Vol. 16, No. 1 (Winter 2003): 1-42.

[R15] Raphael Cohen-Almagor and E. Wesley Ely, “Euthanasia and Palliative Sedation in Belgium”, BMJ Supportive and Palliative Care, Vol. 8, Issue 3 (2018): 307-313, https://spcare.bmj.com/content/8/3/307?ijkey=OTelnqlPkW1VJBe&keytype=ref

[R16] R. Cohen-Almagor, “The Patients’ Right to Die in Dignity and the Role of Their Beloved People”, Annual Review of Law and Ethics, Vol. 4 (1996): 213-232.

Sincerely

Raphael Cohen-Almagor, DPhil, Oxon The University of Hull, The United Kingdom