1. Physician Assisted Death: Challenges for Hospice and Palliative Care Nuala Kenny, OC, MD, FRCP(C) Professor Emeritus Department of Bioethics Dalhousie University Ethics & 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 ones 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 -3 rd 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. 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 Some Arguments For Physician Assisted Suicide

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 persons 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. Good EOL Care & PAD: Reasons for Request (Oregon) 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%)

16. Requests for AD-A Systematic Review Hudson 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 patients 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 Case Against 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?