Advance Care Directives

1. Advance Care Directives Rels 300 / Nurs 330 November 2013

2. I, MAXINE, being of sound mind and body, do not wish to be kept alive indefinitely by artificial means. Under no circumstances should my fate be put in the hands of pinhead politicians who couldn't pass ninth-grade biology if their lives depended on it, or lawyers / doctors interested in simply running up the bills. If a reasonable  amount of time passes and I fail to ask for at least one of the following: • Mocha Latte • Chocolate • Diet Coke  • Chocolate  • Ice Cream • Chocolate • Chicken fried steak, cream gravy, mashed potatoes • Chocolate • Rib eye steak, baked potato, corn on the cob • Chocolate • Hot dog and French fries • Chocolate • Pizza and chocolate chip cookies • Ice cream 300/330 appleby • Candy • Chocolate  • Candy bar • Chocolate • Sex • Chocolate It should be presumed that I won't ever get better. When such a determination is reached, I hereby instruct my appointed person and attending physicians to pull the plug, reel in the tubes and call it a day. 

3. Of Life and Death, Ch. VI http://www.parl.gc.ca/35/1/parlbus/commbus/senate/com-e/euth-e/rep-e/lad-e.htm#vi • Instruction Directive = a document that sets out what or howhealth care decisions are to made in the event of incompetence [specific instructions provided] • Proxy Directive = a document that sets out who is to make health care decisions in the event of incompetence 300/330 appleby

4. End-of-Life Law & Policy in Canadahttp://eol.law.dal.ca/ “Advance health care directives are directions given by a competent individual concerning what, how, and/or by whom health care decisions should be made in the event that the individual becomes incompetent to make these decisions in the future.” In NS, new legislation in 2009 recognized both instruction directives and proxy directives – previously, only proxy directives. 300/330 appleby

5. http://www.advancecareplanning.ca/ About Advance Care Planning It’s about conversations. It’s about decisions. It’s how we care for each other. 300/330 appleby

6. http://www.advancecareplanning.ca/ • Most of us hope that we will die peacefully and be able to communicate with loved ones until the very end. • Most deaths do not occur this way.  • Learn more about Advance Care Planning. • http://www.youtube.com/watch?v=2aOX9abJhio 300/330 appleby

7. http://www.advancecareplanning.ca/media/30776/acp%20workbook%20_final-colour-web.pdfhttp://www.advancecareplanning.ca/media/30776/acp%20workbook%20_final-colour-web.pdf 300/330 appleby

8. http://www.advancecareplanning.ca/media/30776/acp%20workbook%20_final-colour-web.pdfhttp://www.advancecareplanning.ca/media/30776/acp%20workbook%20_final-colour-web.pdf 300/330 appleby

9. http://www.advancecareplanning.ca/media/30776/acp%20workbook%20_final-colour-web.pdfhttp://www.advancecareplanning.ca/media/30776/acp%20workbook%20_final-colour-web.pdf 300/330 appleby

10. http://www.advancecareplanning.ca/media/30776/acp%20workbook%20_final-colour-web.pdfhttp://www.advancecareplanning.ca/media/30776/acp%20workbook%20_final-colour-web.pdf 300/330 appleby

11. Communicating Your End-of-Life Wishes Questions to discuss with family members: • How do you want to be treated at the end of your life? • Are there treatments you particularly want to receive or refuse? • What are you afraid might happen if you can't make decisions for yourself? • Do you have any particular fears or concerns about the medical treatments that you might receive? Under what circumstances? • http://www.caringinfo.org/i4a/pages/index.cfm?pageid=1 300/330 appleby

12. Making Decisions for Others How many of the previous questions would you be able to answer on behalf of your: • Parents • Partner • Best friend • Siblings 300/330 appleby

13. The Medical DirectiveLinda L. Emanuel & Ezekiel J. Emanuel • Medical situation (6 situations • Treatment goals (5 categories) • Specific potential treatments (9, later 12) WELLNESS WORKSHEET 108 Advance Medical Directives (Emanuel & Emanuel) http://www2.gsu.edu/~wwwche/Medicaldirective.pdf 300/330 appleby

14. 6 Potential Situations • Coma or PVS; no hope of regaining awareness; • Coma; small but uncertain chance of regaining awareness; • Brain damage or disease (irreversible) + a terminal illness; • Brain damage or disease (irreversible) + no terminal illness; • Incurable chronic illness (mental or physical) + life threatening but reversible illness; • In current state of health + life threatening but reversible illness + temporarily incompetent. 300/330 appleby

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16. http://medicaldirective.net/sample_section.htm

17. The Medical DirectiveLinda L. Emanuel & Ezekiel J. Emanuel http://www.mhhe.com/socscience/hhp/fahey7e/wellness_worksheets/wellness_worksheet_108.pdf Wellness Worksheet Scenario A = Nancy Cruzan What choices would you make in this scenario? Listen to a conversation Jill & Phil say: ‘Do not resuscitate’(video clip 5:01) http://nhslocal.nhs.uk/story/features/jill-and-phil-brooks-explain-why-they-have-prepared-do-not-resucitate-document (5:01) Complete the Wellness Worksheet, Situation E, imagining that at some time in your future you might develop an incurable chronic illness. Scenario E = Jill Brooks What choices would you make?

18. Following an Advance Directive • Pass your Worksheet to someone who is not sitting directly beside you • Read over the choices made under Situations A & E • Now do your best to anticipate which choices the author of the advance directive would make if he or she were the patient in the following scenario, “How I lost my Wife” 300/330 appleby

19. How I lost my Wifehttp://www.dyingmatters.org/story/how-i-lost-my-wife# “On the 1st of February my wife was walking to a second-hand bookshop where she was due to stand in for the normal book shop helper. Her route crossed the main Derby Ring Road at a point where there is no pedestrian crossing. The view both for pedestrians and drivers is not bad. There are about 10 seconds between a car appearing round the bend and reaching the crossing point if travelling at the allowed 40 mph, and there was no evidence that the car that hit her was travelling too fast… “She suffered numerous limb fractures but the most serious damage was to her brain where extensive haemorrhaging had taken place. This was made clear by the MRI. Her brother and two daughters and I were all there. The surgeon told us that, over time, he could mend her bones but not her brain.” Situation “F” 300/330 appleby

20. As a healthcare provider, do I have to follow a patient's advance directive? Yes, you do.A patient's advance refusals of treatment are legally binding if • the treatment refusals are applicable to the patient's current circumstances, and • there is no reason to believe that the patient later changed his or her mind. If you don't follow a valid advance directive, you may be vulnerable to professional discipline and/or a lawsuit by the patient or the patient's family. 300/330 appleby

21. As a healthcare provider, what do I do if I think that the patient's proxy is not respecting the patient's prior expressed wishes, or is not acting in the patient's best interests? 300/330 appleby

22. Components of a valid instruction directive • Person can imagine potential health situations, e.g. HIV/AIDS living will • Current health with potentially reversible illness • Chronic illness with physical disability • Dementia: mild, moderate, severe • Person understands potentially life-sustaining interventions • e.g., CPR, ventilator, surgery, blood transfusion, antibiotics, tube feeding 300/330 appleby

23. Patient has been informed and understands: • Potential medical problems • Medically indicated treatment interventions • Alternatives to indicated treatments • Consequences of accepting medically indicated treatment • Consequences of refusal of treatment • Decisions have been voluntary, without coercion or pressure • Person is currently competent 300/330 appleby

24. U of Toronto: Joint Centre for Bioethics, HIV Living Will http://www.utoronto.ca/jcb/outreach/documents/JCB_Living_Will_HIV.pdf 300/330 appleby

25. A Matter of Choice: Position Statement on Assisting in a Suicide and Active, Voluntary Euthanasia (adopted May 1999) “…a competent person has the right to refuse, or withdraw consent to, any clinically induced treatment, including life-saving or life-sustaining treatment. “…when a person is incompetent, treatment decisions must be based on his or her wishes as expressed in advancedirectives or similar instruments. “Where a person’s wishes are not known, treatment decisions must be based on what is in the person’s best interests; part of the process for determining this involves consultations withthose who are significant in the person’s life.” [Canadian AIDS Society] 300/330 appleby

26. Choosing a Proxy • Who would be your legal substitute decision maker? • Who is the person who knows you best? • Who would you want to make decisions for you if your were unable to do this? • Do you imagine that there would be any conflict among these people with regard to decisions? • Have you ever had a conversation with any of these people concerning health care wishes or decisions? 300/330 appleby

27. Film: 'I Didn't Want That' http://www.dyingmatters.org/page/i-didnt-want-that[6:36] Released as part of Dying Matters Awareness Week 2012, this carefully crafted short film was created to act as a stimulus for making end of life wishes clear and changing the way the nation thinks about death. 300/330 appleby

28. Recommended Sources:End-of-Life Law & Policy in Canadahttp://www.dal.ca/sites/nels.html; http://eol.law.dal.ca/?page_id=221 • Start the Conversation about • End-of-Life Care http://www.dyingmatters.org/ http://www.advancecareplanning.ca/ 300/330 appleby Raising awareness of dying, death and bereavement