Leadership Charlotte Class 35 Healthcare Day

1. Leadership Charlotte Class 35Healthcare Day December 12, 2013

2. Objectives • Review the predominant model of medical care & results • Review the basic principles and components of advance care planning • Learn the four (4) major medical ethical principles • Use two(2) hypothetical patient-family scenarios to discuss ACP & associated medical ethical principals

3. “Curative” Model Palliative care begins Cure/Control/Restore/Rehabilitate Hospice Diagnosis of Life Threatening or Chronic Illness Death

4. Patients are Suffering • The SUPPORT Principal Investigators. JAMA 1995; 274: 1591-1598. • Desbiens NA et al. Crit Care Med 1996; 24:1953-1961. • Singer et al. JAMA 1999;281(2):163-168. • Somogyi-Zalud E et al. JAGS 2000; 48:S140-145. • Nelson & Danis. Crit Care Med 2001; 29(2): N2-N9. • Nelson JE et al. Crit Care Med 2004; 32:1527-1534. • Nelson JE et al. Arch Intern Med 2006; 166:1993-1999.

5. Caregivers are Suffering • Tolle et al. Oregon report card. 1999 www.ohsu.edu/ethics • Emanuel et al. Ann Intern Med 2000;132:451. • Steinhauser et al. JAMA 2000;284:2476-82. • Lee et al. Am J Prev Med 2003;24:113. • Teno et al. JAMA 2004;291:88-93. • Wright et al. J ClinOncol 2010;28:4457-64. DEATH: RR 1.8 if care giving >9 hrs/wk for ill spouse RR 1.6 among caregivers reporting emotional strain

6. “A medicine that embodies an acceptance of death would represent a great change in the common conception, and might set the stage for viewing the care of dying people not as an afterthought when all else has failed but as one of the ends of medicine. The goal of a peaceful death should be as much a part of the purpose of medicine as the promotion of good health. That means medicine must abandon the modern cultic myth that in the cure of disease lies the cure of death…Disease and death will have their day.” Callahan D. The Troubled Dream of Life: In Search of a Peaceful Death. Portland, OR: Touchstone Press; 1996.

7. Patient #1 JB is a 63 yo male with COPD and 2 month history of anorexia, 15 lb. weight loss, intermittent cough with bloody secretions and progressive shortness of breath. He presents to the ER in severe respiratory distress and is intubated. Thorough evaluation follows and he is found to have a large RUL mass Lung windows confirm advanced emphysema. Two years earlier his sister died of complications from lung cancer after receiving chemotherapy, radiation therapy and having a prolonged stay in the ICU on mechanical ventilation. JB was devastated by what his sister went through and told multiple family members that he would never want chemotherapy or radiation therapy, and “NEVER EVER” wanted a “tube in my throat”.

8. …Patient #1 The medical team discussed the situation in detail with the patient and the family. No living will, healthcare power of attorney (HCPOA) or MOST were ever completed. How should the healthcare team proceed? How should they advise the family?

9. Patient #2 MB is an 89 yo with advanced Alzheimer-type dementia, bed bound, non-verbal, multiple advanced decubitus ulcers, recurrent episodes of urosepsis and pneumonia. She is admitted to the ICU with respiratory failure in the setting of urosepsis and pneumonia. Despite 4 weeks of ICU care she remains ventilator dependent. Her decubitus ulcers are worsening, she is losing weight and her kidneys are now failing.

10. …Patient #2 • She has a living will that states she does not want to be kept alive on “machines” if she has “no chance of recovery”. She previously completed a MOST form documenting her desire for comfort directed treatments if a trial of antibiotics and IV fluids were not helpful. • The intensivist, nephrologist, infectious disease specialist, wound care RN, plastic surgeon and neurologist confer on multiple occasions and agree that MB will not recover. • The family insists on “everything being done”.

11. Advance Care Planning – Why? • 80% of people want to die at home - but only 20% do • 50% are not able to make decisions about their care at the end of life • Most doctors will provide non-comfort treatment if they don’t know a patient’s desires • Family members often do not know a person’s wishes • Only 42% have talked about their wishes for care at the end of life with anyone other than family 2002 AARP Survey – EOL Issues

12. ACP – Why? • Only 23% have spoken with their lawyer • Only 6% have spoken to clergy • 79% say it is important to be off life support at EOL • 73% say that not being able to communicate their wishes would be worse than death • Only 11% have spoken with their doctor 2002 AARP Survey – EOL Issues

13. Advance Directives • Living Will • Health Care Power of Attorney (Durable powers of attorney for health care) • Appropriate for all adults • Allows patients’ wishes to be honored even if they cannot speak for themselves

14. Medical Orders for Scope of TreatmentM.O.S.T. • ACP Documents • Often unavailable • Vague • Not terribly successful in ensuring patient’s wishes honored • POLST (Physician’s Orders for Life-Sustaining Treatments) • Started in Oregon • > 40 states have PO(L)ST form (legal medical order) • Very successful in matching patient wishes with care received

15. M.O.S.T. • Medical order to complement ACP documents • Follows patients across care settings • Promotes patient self-determination • Protects absolute right of informed refusal • Passed by N.C. Legislature in 2007 • NC Gen. Stat. § 90-21.17

16. FRONT

18. Advance DirectivesCommon Myths & Misunderstandings • ACP ≠ Do Not Attempt Resuscitation • Requires lawyer to execute • “Active” while patient still retains decision-making capacity • HCPOA may trump the patient • Only for terminal patients

19. Common Myths & Misunderstandings • Competency • Legal term • Psychiatric term sometimes • Matters of estate/finance • Decision-making capacity • Determined by any physician • Often decision-specific • Can fluctuate over short term

20. Ethical Principals Autonomy Beneficence Non-maleficence Justice

21. Autonomy • Two sides • Informed consent • Informed refusal • Autonomy #1 ethical principle???

22. Beneficence • Help the patient • Who are we really helping? • And at what cost?

23. Non-maleficence • Do no harm • “Even on our worse day…we shouldn’t do anything that would hurt the patient…”

24. Justice • Individual justice • Equitable access for the patient • Societal justice • Fair for society

25. Futility • Greek term • Useless • The quality of having no practical use • Incapable of being achieved

26. Sisyphus

27. Summary • Advance Care Planning can never start too early • Do not wait until your physician(s) brings it up • Most important to tell your loved one(s) what you want • What brings meaning to your life? • What constitutes an acceptable quality of life for you? • Are there things that are unacceptable under any circumstances? • Share your thoughts & decisions with your physician(s)

28. Patient #1 JB is a 63 yo male with COPD and 2 month history of anorexia, 15 lb. weight loss, intermittent cough with bloody secretions and progressive shortness of breath. He presents to the ER in severe respiratory distress and is intubated. Thorough evaluation follows and he is found to have a large RUL mass Lung windows confirm advanced emphysema. Two years earlier his sister died of complications from lung cancer after receiving chemotherapy, radiation therapy and having a prolonged stay in the ICU on mechanical ventilation. JB was devastated by what his sister went through and told multiple family members that he would never want chemotherapy or radiation therapy, and “NEVER EVER” wanted a “tube in my throat”.

29. …Patient #1 The medical team discussed the situation in detail with the patient and the family. No living will, healthcare power of attorney (HCPOA) or MOST were ever completed. How should the healthcare team proceed? How should they advise the family?

30. Patient #2 MB is an 89 yo with advanced Alzheimer-type dementia, bed bound, non-verbal, multiple advanced decubitus ulcers, recurrent episodes of urosepsis and pneumonia. She is admitted to the ICU with respiratory failure in the setting of urosepsis and pneumonia. Despite 4 weeks of ICU care she remains ventilator dependent. Her decubitus ulcers are worsening, she is losing weight and her kidneys are now failing.

31. …Patient #2 • She has a living will that states she does not want to be kept alive on “machines” if she has “no chance of recovery”. She previously completed a MOST form documenting her desire for comfort directed treatments if a trial of antibiotics and IV fluids were not helpful. • The intensivist, nephrologist, infectious disease specialist, wound care RN, plastic surgeon and neurologist confer on multiple occasions and agree that MB will not recover. • The family insists on “everything being done”.