“Living Wills”

1. “Living Wills” Fiona Crow MD March 2009

2. Where to start? What do we want to achieve? When?

3. Where to start? The goal is to create an atmosphere with the patient and/or appropriate other where the goals of care can be frankly, but gently, discussed. Where the “client” and significant others have enough (while not overwhelming them) information about the illness and likely outcomes to establish principles to guide ongoing care and to name a proxy. This document is fluid because with changes in status the goals may change.

4. What are the Obstacles?

5. What are the Obstacles? • TIME,TIME, TIME it can take a lot but.. • Space and Privacy • Professional’s discomfort • Lack of understanding of WRHA ACP levels and their interpretation • Lack of experience/knowledge about the legalities of Advance Care Plan, Health Care Directive, Living Wills, Proxy, POA etc

6. Definitionsas pertain to Manitoba

7. Health Care Directive Advance Care Plan • Often imprecise, vague, and static • Lack of consensus –then what? • Logistics (is it available when needed?) • Fit in specialty areas • Lack of understanding by health care providers • Lack of understanding by health care providers • Developed without medical input • Some physicians trump wishes (clinical evidence) • Need to be competent, must be signed • Some physicians trump wishes (research based)

9. Manitoba Health Care Directives Act • Must be competent, aged 16 yrs old or more • A directive must be in writing and dated (witness not required unless physically incapable of signing) • “No person is required to inquire into the existence of a directive or of a revocation of a directive” • “No action lies against a person who administers or refrains from administering treatment to another person by reason only that the person • has acted in good faith in accordance with the wishes expressed in a directive or in accordance with a decision made by a proxy; or • has acted contrary to the wishes expressed in a directive if the person did not know of the existence of the directive or its contents.

10. Substitute Decision Makers • The following, in order of priority, may act as substitute decision-makers: • A proxy named in a Health Care Directive/Living Will. • A Court-Appointed Committee appointed under section 75(2) of the Mental Health Act, or a Substitute Decision-Maker for Personal Care appointed under the Vulnerable Persons Living with a Mental Disability Act. A Committee or a Substitute Decision-Maker for Personal Care may be an individual(s) or the Public Trustee. Some Orders of Committeeship were previously known as “Orders of Supervision”. Existing Orders of Supervision are treated as Orders of Committeeship under the Mental Health Act. • Others, including family and/or friends.

11. Family/Friends as Substitute Decision Makers • likely to be the most common scenario. • For ACP, must have the support of all interested and available parties. • usually, but not necessarily, a close relative, who speaks for all. • may, however, be a supportive friend • Power of Attorney does not entitle its holder to make health care decisions however… • on occasion, an existing power of attorney may be most appropriate to fulfill this role, since such an individual, although limited to property decisions, has obviously been placed in a position of trust. slide courtesy of Dr M Harlos

12. Advance Care Plan 4 This plan provides for all available treatment of all conditions, and includes full CPR.

13. WRHA Advance Care Plan 1 This is often referred to as palliative or comfort care. It focuses on aggressive relief of pain and discomfort. There is no CPR (intubation, assisted ventilation, defibrillation, chest compressions, advanced life support medications). There are also no life sustaining or curative treatments such as ICU, tube feeds, transfusions, dialysis, IV’s and certain medications. All available tests and treatments necessary for palliation are done, including medications and transfer to hospital if necessary.

14. and everything in between… ACP 1 on deeper discussion may NOT necessarily mean no lab, no treatments but rather that the focus is comfort. Depending on the burden and goals at that moment treatment, that is not aimed at cure but rather quality and time, may be considered. ACP 4 does not mean that it is not appropriate often to discuss the “what if ….”

15. Barriers to Physician Comfort

16. Barriers to Physician Comfort Sense of failure Reframe task , chance to connect, helping provide a better experience for patient and family. Patients do not want to discuss these issues. Data does not support this, ask the patient permission, ask what is hard for them. Do not want to take away hope. Reframe hope and opportunities

17. Discomfort with lack of certainty Help patients ask for and get the info they need to make decisions. Getting close to the patient will interfere with my ability to care for them. With time you will take lessons from your patient and grow because of the experience. Discomfort with silence. Practice it will feel okay, think about what the silence is saying. Barriers to Physician Comfort…cont’d Weiner, J.S.et al 2004

18. Essentials Of Discussion

19. Essentials Of Discussion Willing? Capable? Where? With whom? Confirm diagnosis and expected outcome. What options are there for treatment? What is reversible and what is not. Be as clear as possible Leave space for hope, address fear of abandonment. Uniqueness of their situation. Prognosis is an estimate Possibility of unexpected events for good and bad

20. Essentials Of Discussion Is there an advance directive already. Address sense of unfairness, of being a burden. Make eye contact and appropriate physical contact. Finally ask for some sense of understanding of discussion. cont’d.. Pentz,R.D. et al 2002

21. How to open the discussion when not a response to an enquiry. Family Conference Proxy Bedside

22. “Family Conference” 1. Introductions. 2. Ask them for quick background of their understanding of illness. 3. Ask them for a sense of the trajectory over the last while.

23. Help for substitute decision makers:

24. Help for substitute decision makers: • Remind them of their role. • Speak from loved one’s head and not their heart • Have there been recent comments reflecting a probable approach? • “I’ve had enough… I wish this would end soon” • Consider the difference between prolonging living and making someone take longer to die. • A concept that depends on interpretation of the quality of life… need input from patient / family. • Values exhibited/ discussed with decisions in the past

25. Treatment / Intervention Considerations

26. Treatment / Intervention Considerations • What are the goals of the treatment? • Whose goals are they, and are they consistent with those of the patient? • Is it possible to achieve the goals? • What are the: • Positive effects vs. Side effects (clinical assessment by health care team) • Benefits vs. Burdens (experiential interpretation by patient / family) • Is there enough reserve to tolerate the treatment? slide courtesy of Dr M Harlos

27. Bedside with patient Do they want to talk about their illness and its implications??

28. Values • What do you value about your life? • Pleasurable activity, cognition, dignity, relationships, surroundings. • How do you feel about death and dying. • Fears of process and / or afterlife. • Do you believe life should always be preserved as long as possible, if not what situations might lead you to feel otherwise? Can you imagine scenarios where this would be tolerable temporarily?

29. Values, cont’d What is fair to tolerate in the face of various prognoses. Do you hold any religious or moral views that influence your treatment choices. Have you heard of or witnessed end of life scenes that influence your answers and feelings. Lynn.J, & Harrold,J.1999

30. Example: • In case of a serious illness or injury, there are a number of medical procedures called interventions, which can prolong life and delay the moment of death. These include ventilation, tube feeding, intravenous fluids, etc. It is important to think about and choose what you want from the following: Fraser Health

31. • Have full life support with medical interventions. • • Have a trial period of life support with medical interventions and, if unsuccessful, allow natural death to occur. The trial period could last several days or weeks and would be the result of a discussion between your substitute decision maker and your healthcare providers. • • Limit the use of life support with medical interventions and allow natural death to occur.

32. Patient / family resources • WRHA advance Care Planning booklet ( available on line at the WRHA site). • ERIK booklet .Winnipeg Fire and Ambulance. • Let me Decide . http://www.newgrangepress.com/let_me_decide_series_books_videos.html • Government of Manitoba (www.gov.mb.ca/health/livingwill.html) • ▪ Manitoba Ministry of Healthy Living: http://www.gov.mb.ca/health/legislation/statutes.html • ▪ Health Care Directives Act, C.C.S.M. 1992, c. H27: http://web2.gov.mb.ca/laws/statutes/ccsm/h027e.php • Fraser Health http://www.fraserhealth.ca/Services/HomeandCommunityCare/AdvanceCarePlanning/Pages/Workbook.aspx

33. References • Knopps, K.M. et al. 2005. Patient desires: A model for assessment of patient preferences for severe or terminal illness. Palliative and Supportive Care. 3: 289-299. • Weiner, J.S. et al. 2004. Acare, a communication training program for shared decision making along a life limiting illness. Palliative and Supportive Care 2: 231-241 • Pentz R.D. et al. 2002 Discussion of the Do Not Resuscitate order: A pilot study… Support Care Cancer 10: 573-578 • Lynn, J and Harrold, J. Handbook for Mortals. Guidance for people facing serious illness. 1999, Oxford University Press. p 122 • WRHA presentation on ACP • Pallium

34. Facilitating Advance Care Planning: An Interprofessional Educational Program. Curriculum Materials. Educating Future Physicians in Palliative and End of Life Care (EFPPEC)