1. Advance Care Planning/Advance Health Care Directives Willow Glen (San Jose) Parkinson’s Support Group Cheryl Bartholomew, BSN, RN Volunteer Advance Health Care Directive Counselor El Camino Hospital Health Library cherylbart4ech@gmail.com 4/1/2016 1

2. Advance Health Care Directive – The Basics What is it, and what does it do for me? Is it a legal document? Does it need to be done by an attorney or a Notary Public? 2

3. What does an AHCD do? Allows you to –1. Name agent(s) to make health care decisions when you can no longer make them yourself –2. State what treatments you would like and what treatments you would not like—and under what circumstances—can spell these out in a personalized statement May do both, but may do just one or the other –No named agent or No health care instructions 3

4. PART 1: CHOOSING YOUR AGENT 4

5. Agent must be: Agent may be: Eighteen or older A family member or Have capacity friend TO AVOID CONFLICTS Agent should be: someone who knows and will respect your values; Can be expected to be available when needed; Is willing to accept the privilege/responsibility; Has the requisite personality to do the job __

6. TO AVOID CONFLICTS Agent may not be: Someone you wish to “disqualify” in writing Possible reasons: –Protection from someone arriving on the scene, perhaps unexpectedly, demanding that he/she be in charge or that the doctor “do everything” –Fear of differing values interfering with proper choices –A personality that might prove difficult 6

7. Titles of decision-makers In California in 2012, there is no legal hierarchy for naming the decision-maker as in “spouse”, “adult child” etc. Agent (written AD) Surrogate decision-maker (verbal AD) Conservator Attorney-in-fact 7

8. When does the agent’s authority become effective? When the primary physician determines that you have lost capacity to make health care decisions… Unless you elect to have that authority in place even while you have capacity: –Because of your l ack of medical sophistication –Your cultural expectations –Aging, “slowing down” of thinking –Your wish to honor the person you’re choosing as ‘Agent’ –Your wishing to avoid MD’s evaluation of your capacity 8

9. 9 Competence v. Capacity Everybody presumed to be “competent” “Capacity” determined by “primary physician” No simple scheme to determine capacity… various tests, subjective assessment by skilled practitioners Variability of capacity –Fluctuates –Can be affected by meds, time of day, pain level

10. PART 2: END-OF-LIFE TREATMENT OPTIONS 10

11. Typical Choices (a) Choice Not to Prolong Life... when the likely risks and burdens of treatment would outweigh the expected benefits, OR (b) Choice To Prolong Life.. as long as possible within the limits of generally accepted health care standards Burden/benefit ratio highly individual 11

12. Treatment is a benefit if… Prolongs life of acceptable quality to reach a particular goal Restores or maintains desirable function Promotes your goals and values Is consistent with your cultural and spiritual values 12

13. Treatment is a burden if … Results in more or unacceptable pain Damages body image or function Does psychological harm Creates unacceptable cost Contradicts your spiritual and cultural values 13

14. If you had irreversibly lost capacity, what do you think you would prefer? A prolonged life, with visits from family and friends? An illness or condition that could end your life if not treated aggressively (such as pneumonia or a severe heart attack)? 14

15. A few thoughts-- Most people would rather not die in a hospital About half of us are not able to make our own decisions when we are close to death The “default position” in medicine these days is to treat Conflicts are common when there are no clear wishes Patients’ rights need to be protected 15

16. What do people, yourself or others, fear at the end of life? Pain & suffering, inadequate pain relief Loss of control, loss of dignity Being a burden Relationship issues Inappropriate prolongation/shortening of life 16

17. Current Standards of Care Physicians, PAs and NPs should talk with all adult patients who have capacity about future wishes if they lose capacity Treatment for patients lacking capacity must respect their prior wishes Artificial nutrition and hydration are medical treatments MD’s must comply with an AD “and a reasonable interpretation thereof” 17

18. * Standard AD form, with minimum information/instructions (CMA form, “standard” form available in several different languages) vs. Individualized health care instructions (various organizations, disease-specific instructions, worksheets, customized personal wishes) 18

19. 19 Making an individual, specific, “authentic” AD by addressing issues of: (pages may be added: must be signed and dated same time as AD) Personal and cultural values, faith tradition, family needs Quality of life (“_______ ” is worse than death for me) Use of new treatment not previously known Post-death wishes, arrangements __

20. 20 Choices that might be addressed: (additional sheets may be added as needed) Provision, withholding, or withdrawal of life- sustaining treatments: including but not limited to –cardio-pulmonary resuscitation (CPR) –artificial nutrition and hydration –antibiotics –transfusions Provision of pain relief—’palliative care’ Organ or body donation __

21. Stating goals of care “...minimum quality of life, meaning I must be able to: _________________________________ _________________________________” 21

22. Precedence statement: a choice If there is a conflict between the health care instructions I have given and what my agent thinks best—in the moment, given new information, for reasons of family needs (to travel, for instance), a) I give precedence to my agent, to make decisions in his/her best judgment OR b) I want my written word to be followed as precisely as possible 22

23. 23 Only 3 requirements for legal AD: (CA probate code 4673) Date of execution Signed by the principal (you!) (or in your name by another adult in your presence and at your direction) The AD is either acknowledged before a notary public or signed by at least two witnesses (certain requirements, e.g. not the Agent)

24. 24 Duration of an Advance Directive Lasts indefinitely unless –A limited time has been specified in the AD –You (the “Principal”) revokes it –this requires capacity Prior to 1992, duration was limited to 7 years unless-- –Already in effect (principal lost capacity while AD was valid)

25. When to review Advance Directive? Regularly: at least every two years (Tax time? Your birthday?) Change in circumstances –New diagnosis or health status –Death in family –Divorce (if spouse was named as agent, automatic revocation only of agent designation) –Different physician –Different health plan 25

26. 26 ADVANCE HEALTH CARE DIRECTIVES DO NOT APPLY IN AN EMERGENCY Paramedics will recognize only 1. The Pre-Hospital Do Not Resuscitate form or 2. Physician Orders for Life Sustaining Treatment (POLST) or 3. A Medic-Alert bracelet or medallion engraved Do Not Resuscitate __

27. DOCUMENT CLARIFICATION: AHCD (or AD): initiated by you and does not require a physician’s signature; Pre-Hospital Do Not Resuscitate (DNR) Form: can be initiated by you or your agent or your physician and must be signed by a physician; 27

28. POLST (Physician Orders for Life- Sustaining Treatment): –must be signed by a physician, or as of 1/1/2016, a Nurse Practitioner or Physician Assistant. 28

29. Pre-Hospital Do Not Resuscitate Order “Request to forgo resuscitative measures” Written document, signed by a) the principal (you) or a legally recognized surrogate decision- maker, and b) a physician Evidenced by Medic-Alert bracelet or medallion engraved “do not resuscitate” or “DNR” (DNAR) Applies “within or outside a hospital or other health care institution” 29

30. 30 Physician Orders for Life Sustaining Treatment: POLST What is it? –Physician order; –AB 3000, effective Jan 1, 2009 (last revision done 1/20/2016); –Standardized bright pink form –Addresses issues beyond resuscitation What is POLST not? –Not an AD or a document limited to “Do Not Resuscitate”

31. 31 Who SHOULD have a POLST? POLST particularly useful for –Frail elders, especially those in any facility –Anyone with one or more chronic, progressive diseases –Anyone with a terminal illness –Anyone whose “death within the next 12 months would not surprise us” –Others interested in defining their end-of-life care

32. Thank you for the opportunity to visit with you today and have this conversation! Questions and/or comments are welcomed! Cheryl Bartholomew, BSN, RN Volunteer Advance Health Care Directive Counselor El Camino Hospital, Health Library and Resource Center For appointments: 650-940-7210 cherylbart4ech@gmail.com