1. Update on Hastened Death Monica Branigan MD, MHSc (Bioethics) Chair, CSPCP Working Group on Hastened Death

2. Objectives At the end of this session, participants will be able to: 1. Understand the current legal and regulatory status of hastened death 2. Discuss the evolving relationship of palliative care to hastened death 3. Outline various options for patients to access hasten death 4. Consider how to support conscience and self care in ourselves and our teams

3. Legislation and regulatory update

4. Canadian democracy in action Idea- public or private House of Commons Senate Royal assent

5. House of Commons Introduction and First Reading: Reading of the title of the bill Second Reading: Debate in Chamber and vote on the idea behind the bill Committee Stage: A parliamentary committee examines the bill line by line in committee Report Stage: The parliamentary committee reports and amendments are considered and voted on Third Reading: Debate and vote on the changed version of the bill

6. Senate Similar process- for this bill done in parallel What happens when a bill doesn’t pass? A bill keeps going back and forth for a vote on the changes until it passes both Houses in the same format. http://www.lop.parl.gc.ca/About/Parliament/Education/ourcountryo urparliament/html_booklet/how-government-turns-good-idea-law- e.html

7. Bill C-14 241.‍2 (1) A person may receive medical assistance in dying only if they meet all of the following criteria: (a) they are eligible — or, but for any applicable minimum period of residence or waiting period, would be eligible — for health services funded by a government in Canada; (b) they are at least 18 years of age and capable of making decisions with respect to their health; (c) they have a grievous and irremediable medical condition; (d) they have made a voluntary request for medical assistance in dying that, in particular, was not made as a result of external pressure; and (e) they give informed consent to receive medical assistance in dying

8. 241.1 (2) A person has a grievous and irremediable medical condition if (a) they have a serious and incurable illness, disease or disability; (b) they are in an advanced state of irreversible decline in capability; (c) that illness, disease or disability or that state of decline causes them enduring physical or psychological suffering that is intolerable to them and that cannot be relieved under conditions that they consider acceptable; and (d) their natural death has become reasonably foreseeable, taking into account all of their medical circumstances, without a prognosis necessarily having been made as to the specific length of time that they have remaining. http://www.parl.gc.ca/HousePublications/Publication.aspx?Language=E&Mode=1&DocId=81 83660

9. Reasonably foreseeable definitions 1.Department of Justice “Does the person have to be dying from a fatal or terminal disease to be eligible? No…….. It is not required that the person be suffering from a fatal disease that will cause their death………This language was deliberately chosen to avoid limiting assistance to those suffering from fatal or "terminal" conditions, and to allow everyone who is in suffering while in decline toward the end of life to have the option of choosing a medically-assisted death.” http://www.justice.gc.ca/eng/cj-jp/ad-am/faq.html 2. Legal definition Foreseeable is a concept used in tort law to limit the liability of a party to those acts which carry a risk of foreseeable harm, meaning that a reasonable person would be able to predict or expect the ultimately harmful result of their actions

10. Regulatory update 1 CPSO: will continue to use the language of “effective referral” AND are considering including delegation of referral the physician will need to ensure that delegatee fulfills all the requirements in the policy: referral made to non-objecting person, agency, timely manner guidelines available if no legislation

11. http://www.macleans.ca/politics/ottawa/a-province-by- province-look-at-assisted-death-guidelines/

12. Regulatory update 2 College of Nurses on Ontario: currently, no involvement without Ontario Superior Court permission unclear if Bill C-14 not passed Ontario College of Pharmacists: if no legislation current documents indicate agreement with CPSO policy pharmacists may prefer to dispense to patient or MD and not counsel if no legislation

13. Where will we be June 6, 2016? Senate unlikely to pass the bill Reasonably foreseeable and no advance directives seen as too restrictive May request more protection for HCPs Likely to go back to House of Commons for debate From Department of Justice website “ If legislation is not in place by June 6, 2016, the Court's ruling would take effect, meaning that medical assistance in dying will be lawful where it is in accordance with the parameters set by the Carter ruling. The interim court approval process established by the Supreme Court in January 2016 would no longer be required for medical assistance in dying.” http://www.justice.gc.ca/eng/cj-jp/ad-am/faq.html

14. This means…. Provincial regulatory guidelines come into play Nurses may not participate Some pharmacists and doctors may be reluctant AND possible options 1.Provincial Superior Courts may issue new practice guidelines to continue interim process 2.Attorney Generals may issue statements about lack of prosecution for nurses and pharmacists acting under instruction from physicians

15. Still uncertain Death certificates- is this reportable to Coroner? Oral medication availability- currently $9000 Provincial response will individual provinces have coordination systems in place to link willing providers to eligible patients? Will there be Charter challenges to Bill C 14 when eventually passed?

16. Palliative care involvement

17. At first, a storm in the distance

18. February 6, 2015: a burden on our shoulders?

19. The discourse of “distinct”

20. Shared responsibility

21. Access plans: what’s next? Consistent, clear messaging to patients Same or separate messaging from your institution? Case by case approach. How do you justify? Decision making tool Procedural justice: if the process is seen to be fair, people are more likely to support a decision for a controversial topic. If you are not offering the service, you need to justify this. If you are offering the service to some and not others, you need to justify this.

22. Jennifer Gibson et al. Priority Setting in Ontario’s LHINs: Ethics and Economics in Action

23. Ethical access tool 1. Determine aim and scope of decision "How will our eligible patients access the service of hastened death?" This answer can serve as the basis for a group/service/team policy statement. 2. Identify priority setting committee Ideally representation for all group/service/ team members Representatives from institution especially resource team if available Pharmacy Nursing CCAC or community partners Referral agencies Other?

24. 3. Clarify existing resource mix Willing members of group/service if available Other physicians in circle of care including family doctor Institution resource team if available Separate access system (provincial ideally) if available Willing pharmacy Willing nursing Willing community providers

25. 4. Develop decision criteria This would be the task of the committee. Some criteria may include the following- and they need to be prioritized- often by aligning with an group/service/institution’s mission and values: Ease of access for patients Protection of conscience rights of all providers Sustainability of practice for all physicians/providers Willing providers may have capacity limits Other team members may be negatively impacted by work redistribution Impact on other palliative care patients Some patient will welcome group/service providing service Other patients may feel unsafe or be less prioritized Reputation of group/service Effect on referral sources Institutional decision- may trump all other rationales in faith based institutions

26. 5. Identify and rank options based on decision criteria These options could be: Group/service decides they do not have ability to provide any hastened deaths Group/service decides they have capacity for x patients a year Group/service provides service to own patients Group/service will not accept referrals only for hastened death Group/service refers back to circle of care Group/service refers to institution resource team (which may refer to willing group service providers) Group/service refers to separate access system Other?

27. 6. Communicate decisions and rationales This information- rationales and decisions- is shared with patients, other providers and referral sources, institution, community partners and posted publicly 7. Provide formal decision review process Review rationales, decisions, outcomes regularly 8. Evaluate and improve Evaluate impact on patients- who received and did not receive service- AND impact on all providers, community partners etc. Make improvements as necessary that reflect criteria

28. Personal involvement

29. Personal conscience “an inner feeling or voice viewed as acting as a guide to the rightness or wrongness of one's behavior” cognitive and emotive may be influenced by professional values: autonomy and beneficence experience with death our deepest fears our deepest compassion religious beliefs other…….

30. The question of impact Not well studied “Most relatives and physicians had positive reflections……Physicians reported feelings of surprise and of being put under pressure when a request was made. Sometimes they felt reluctant to spend the necessary time, to face the emotional drain and to take on the professional responsibility.” Perspectives of decision-making in requests for euthanasia MK Dees et al. Palliative Medicine 2012; 27: 27-37

31. KNMG (Dutch Medical Association) survey 57% who arranged euthanasia 8/10 or more on emotional strain 70% felt under pressure to grant http://www.dutchnews.nl/features/2015/0 7/rise-in-euthanasia-requests-sparks- concern-as-criteria-for-help-widen/

32. Self Care Need for time to process and work through Need for support and ability to process with others Impact regardless of participation or not…… Can be part of MAID Resource Team mandate

33. The power of relationship Service provider/consumer Language of rights Death medicalized Suffering deserves medical “fix” Impact on provider less important Human being/human being Language of suffering Death a shared human experience Suffering requires an individual and community response Provider also deserving of compassion

34. The power of the law The “right” to hastened death No right to palliative care Legislative options Include in Bill C-14 National Secretariat in Palliative Care Insured service in Canada Health Act/ Renegotiated Health Accord Court challenge lack of service? A Health Accord is an agreement between the provinces, territories and federal government. It provides the provinces with stable funding and sets national standards. The 2004 Health Accord expired March 31st, 2014 after the federal government refused to renegotiate it.

35. What is within our power? Commit to kindness Value difference Be transparent in our decision making Monitor for impact Allow time Value our struggle Examine our ideas about the value of autonomy

36. What does the future hold?

37. https://www.youtube.com/watch?v=_5tJGaWjRZk

40. Recommendations for June 6, 2016 1.Make yourself familiar with provincial College guidelines 2.Make yourself familiar with local organization/institution/provincial resources around MAID 3.Have a clear, consistent, transparent access plan for palliative care patients 4.Share your personal anticipated or actual level of involvement with patients early 5.Call CMPA if you are going to be more involved than exploring an initial request to hasten death

41. And most importantly……… Continue to provide excellent palliative care Continue to teach and support others to build capacity in palliative care Continue to explore fully and compassionately a request to hasten death Continue to advocate for access to high quality palliative care for all Canadians and embrace palliative care as a public health issue

42. Resources Check out http://www.cspcp.ca/ in Member’s Area “Physician hastened Death”http://www.cspcp.ca/