Physician Assisted Death: Challenges for Hospice and Palliative Care

1. Physician Assisted Death: Challenges for Hospice and Palliative Care Nuala Kenny, OC, MD, FRCP(C) Professor Emeritus Department of Bioethics Dalhousie UniversityEthics & Health Policy Advisor Catholic Health Alliance of Canada

2. Historical Perspectives on Physician Assisted Death (PAD) • Longstanding prohibition • Origins of ‘the right to die’-Quinlan case • Refusal of treatment • Now-patients’ rights and autonomy issue • “The right to die as the triumph of autonomy” Beauchamp, 2006 JMed & Philosophy • Today, claims to the ‘right’ to control the circumstances of one’s death AND to • Oblige another (physician) to assist

3. Some International Experience • Oregon & Washington State • PAS • Netherlands & Luxembourg • Euthanasia and PAS • Switzerland-2002 Penal Code • AS • UK actively debating the issue

4. Current State of End of Life Care-Canada • Refusal of Rx by competent patients allowed • Withdrawal/withholding of non-beneficial Rx • Drugs for pain control (Rodriguez Case) • PAS illegal (Sec 241b of Criminal Code) • Euthanasia illegal (Sec.229 of Criminal Code) • Bill C-384 introduced to Parliament -3rd time

5. Bill C-384 • Allows a person to legally request assisted suicide • “free & informed consent”; appears to be lucid; 18>;written request x2; alternatives presented • Any person in “severe physical or mental pain without any prospect of relief” or “suffering from a terminal illness”

6. Some Arguments For PhysicianAssisted Suicide • Respect for patient autonomy • Equality- Charter of Rights and Freedoms • Rejection of relevant ethical distinctions • Duty to relieve pain and suffering-non abandonment • PAD is occurring; better to regulate

7. Some Arguments Against Physician Assisted Death • Respect for autonomy does not ‘trump’ all • There are clear moral/ethical distinctions • PAD is incompatible with physicians’ duties • Killing is not an act of medicine • PAD is not necessary for good EOL care • Effective palliative care for pain and symptoms • Slippery slopes are real

8. Assisted Death: Special Challenges for Hospice and Palliative Care

9. Hospice & Palliative Care (H&PC):Implications Of the Legalization of PAD • Many of the requests will come in/to H&PC • 50% of hospice nurses have had a request • Ganzini et al 2008 Palliative Medicine; 22:659-667 • Hospice and palliative care staff and supporters need to have an accurate and sophisticated understanding of the arguments • The special implications for hospice and palliative care need careful scrutiny

10. Is Assisted Suicide a Component of Palliative Care? • Swiss Palliative Care Society-18% yes • German “ “ “ -25% yes • UK Association for Palliative Medicine-8% • North America debate • For Quill, Battin • Against Foley, Hendin

11. Hospice and Palliative Care: Philosophy of Care • Hospice & Palliative Care • WHO & European Union Palliative Care Association definitions • -hospice/palliative care “neither hastens death nor prolongs dying” • Share a concern for returning dying to the natural • Affirm the goals of medicine in end of life care • Pain & symptom control AND the “last things” • Recognizes the distinction between pain & suffering

12. Crucial Issues for Palliative Care • Many already confuse palliative care with euthanasia • “Assistance in dying”- IS palliative care; PAD is assistance in death • “Death with dignity”-the importance of dignity in palliative care (e.g.Chochinov et al) • Polls showing public support for PAD but very confused answers

13. Clarifying Terminology • Withdrawing/Withholding • Non-beneficial/futile Rx (not care!) • Not ‘passive euthanasia • Physician-Assisted Death • Assisted suicide – intentionally killing oneself with the assistance (i.e., the provision of knowledge and/or means) of a physician • Euthanasia – an act undertaken by a physician with the intention of ending the life of another person to relieve that person’s suffering • Voluntary and involuntary

14. The Importance of Distinctions • Killing vs “letting die” • Culpability-motive, intention & nature of the act • Unrealistic notions of the power of medicine • Withdrawing/withholding • Beneficial vs non-beneficial and harmful interventions • Pain control and “double effect” • Empirical evidence regarding pain control-effectiveness and NOT death-hastening • Terminal sedation

15. Less common concerns of those who elected to die Burden on family/ friends/caregivers (37%) Inadequate pain control or concern about pain (22%) Financial implications of treatment (3%) Most common concerns of those who elected to die Losing autonomy (86%) Less able to engage in activities that make life enjoyable (85%) Losing dignity (83%) Losing control of bodily functions (57%) Good EOL Care & PAD:Reasons for Request (Oregon)

16. Requests for AD-A Systematic ReviewHudson et al Palliative Medicine 2006; 20: 693-701. • Requests common in those with advanced illness • Will to live correlated more with anxiety and depression than physical symptoms • Multiple issues cause patient’s suffering. Suffering takes time to understand • Depression is more common in those who request AD

17. Profiles of Persons Requesting AD • Requests based on fear of the future • Exhaustion/burnout from the illness • Desire to control an out of control process • Patients with significant depression • Patients with a firm belief that it is their right to choose the manner and time of their death. • Zylicz 2002 in Foley & Hendin The CaseAgainst Assisted Suicide: For The Right to End of Life Care.

18. Slippery Slopes • Some believe careful legislation can guard against “slippery slopes” • Empirical data on AD from Oregon (0.09% of deaths), Switzerland (0.45%) the Netherlands (0.3% AS; 1-8% all AD) does not support some of the dramatic claims • However, slippery slopes are real • Even if legalized for competent persons on the basis of autonomy, there will be substantial shifts in thinking regarding all aspects of EOL care for all persons

19. Slippery Slopes • Starts with competent patient autonomy • Alters profoundly relationship between physician duty & patient autonomy • Cannot be logically confined to terminal illness or EOL care • Examples of empirical slippery slopes • The “duty to die” • AD for “life fatigue” • The Dutch dementia debate • The Groningen protocol-euthanzising handicapped newborns

20. Dilemmas Experienced by H&PC Staff Regarding a Request for AD • Responsibility for pain & symptom control • Patient autonomy questioned • AD contradictory to philosophy of H&PC • Missed opportunity for spiritual transformation • Concerns re interfering with autonomy when trying to help redefine quality & dignity • Conflicts over advocacy when patient & family disagree on AD • Harvath et al J Hosp Pall Nursing 2006; 8:200-09

21. Conclusions From The Swiss Experience-Pereira et al. • AD is contrary to the philosophy of H&PC • Allowing AD further confuses the public re H&PC • AD distresses many patients and families • AD presents distress to many practitioners • PC becomes a gatekeeper & perhaps “dumping ground” for AD • The dynamics of care change with AD

22. Some BIG Challenges for H&PC • Dramatic slippery slope cautions regarding the most vulnerable have not been borne out in Oregon; some concerns in the Netherlands but • PAD is about patient autonomy not intractable symptoms in terminal and EOL care • Profound consequences for society and health care professionals generally • Significant consequences for hospice & palliative care, in particular • PAD medicalizes dying; provides a technical ‘fix’ for suffering • Polarizes staff into those pro and con; affects “the team” • Does PC become the death specialty?