Death, Hope and Uncertainty in ICU Decision-making

1. Death, Hope and Uncertainty in ICU Decision-making Frank Chessa, Ph.D. David Seder, MD June 10, 2009

2. The owl of Minerva flies only at night.Plato ?

3. The owl of Minerva flies only at night.Plato Translation – You only need philosophy when there is a problem

4. Objectives • Explore how the concepts of hope, uncertainty and medical futility influence clinician and family approaches to end of life decision making for the critically ill; • Explain how the substituted judgment and best interest ethical standards form the basis of current approaches to end of life decision making in the ICU; • Be thoughtful and provocative so that we more deeply explore ethical challenges in provision of palliative care

5. Focus on Uncertainty • Prognostic Uncertainty • Communicative Uncertainty Results in • Ethical Uncertainty • What is enough and what is too much

6. Background • Always wanted to be a rural family practitioner • Very concerned about medical spending, excessive and inappropriate resource utilization • No religious affiliation, but a heavy utilizer of modern world literature • Initially thought the ICU was the worst place in the world

7. Background • 11 years training in internal medicine, pulmonary medicine, critical care medicine, and neurocritical care • Clinical and research interest in severe brain injuries • Saving and rehabilitating patients with previously “unsurvivable” brain injuries • Great “saves” • Occasional terrible outcomes

8. Case One • 54 yo woman suffered OHCA • 15 minutes “down time” • Therapeutic hypothermia • Hospital day #3: low grade fever • Opens eyes to pain stimulus, no movement of extremities, does not orient to voice or follow commands • Neurology consultant: “dismal prognosis…suggest pursue family discussion regarding goals of care”

9. Case One • HD #4 • Withdraws to pain stimulus, eyes closed • Treated for pneumonia • HD #5 • Awakens, tracks with eyes, does not follow commands • HD #6 • Extubated, minimally communicated • HD #7 • Follows commands and converses in spanish • Discharged home with normal cognitive function

10. Case Two • 76 yo Russian man admitted to CICU after being intubated with respiratory distress in his home • Per EMS – Police had to restrain the patient’s wife while the medics worked – she had tried to block them out of the apartment • Wife arrived (Russian speaking) and through translator described the patient’s vision (several months earlier) of lying dead on a bed of roses with the calendar on the present month.

11. Case Two • Arrangements made for withdrawal of the endotracheal tube and transition to “comfort measures” • 15 yo grandson arrived with one of his teachers and asked that we reconsider, said that the information from his grandmother was wrong • SW consult revealed prior APS involvement (we never got the story) with family. • Decision making delayed

12. Case Two • Rapid clinical improvement • Patient extubated on clinical grounds, hospital day #3 • When he could speak (through the translator), stated his wife was “crazy” and “wanted him dead” • Profound religious differences between patient and wife

13. Case Three • 51 yo man admitted to OSH with BP 240/120 and headache • Rapidly progressive loss of consciousness and development of brainstem deficits, intubated • CT suggested pontine stroke • MRI at MMC showed bilateral pontine infarction

14. Case Three • HD #2: • Quadiplegic with no head or facial movement • Volitional control of blinking, downgaze, weak upgaze • Answered questions briskly by yes-no system of blinks and downgaze • Diagnosis: locked-in syndrome

16. Three dimensions of EOL decision Making • Active vs. Passive • Knowledge of patient’s preferences • Prognosis

17. Three dimensions of EOL decision Making • Active vs. Passive • The more active the means of providing death, the more controversial and (generally) the less ethically acceptable.

18. Active vs. Passive • Withholding • Withdrawing • DNR • Food and Fluids • Withdrawing during/after surgery • Double effect of pain medication • PAS • Active Killing

19. Active vs. Passive • Withholding • Withdrawing • DNR • Food and Fluids • Withdrawing during/after surgery • Double effect of pain medication • PAS • Active Killing

20. Three dimensions of EOL decision Making • Active vs. Passive • Knowledge of patient’s preferences • The more certain that you are do what the patient wants (or would want) the less controversial the decision. • The less certain you are, the more controversial the decision

21. Three dimensions of EOL decision Making • Active vs. Passive • Knowledge of patient’s preferences • Prognosis • Good prognosis: withdrawing life-sustaining care from a patient with a good prognosis is suspect. • Very bad prognosis: not withdrawing futile care wastes resources and increases suffering.

22. Three dimensions of EOL decision Making • Active vs. Passive • Knowledge of patient’s preferences • Prognosis

23. Active Good Prognosis Passive Poor Prognosis Non-autonomous Autonomous

24. Communicating about choices and preferences • Patient has capacity. Ask the patient. • Patient lacks capacity. • Substituted Judgment: Determine what the patient would have wanted were they able to understand relevant information and make a choice. • Search for evidence • POA • Family • Advance Directive (Living Will) • Medical Record • Other providers (PCP) • If sufficient evidence from these sources of evidence is not available, move to best interest standard

25. Determining Capacity • Applebaum and Grisso (NEJM, 1988) • the ability to communicate choices; • the ability to understand relevant information; • the ability to rationally manipulate information; • the ability to appreciate the situation and its consequences. • Maine State Law (18§5-101) • "Incapacitated person" means any person who is impaired by reason of mental illness, mental deficiency, physical illness or disability, chronic use of drugs, chronic intoxication, or other cause except minority to the extent that he lacks sufficient understanding or capacity to make or communicate responsible decisions concerning his person

26. Who makes decisions for a patient who lacks capacity? In order of priority: • Power of attorney (unless revoked) • Court appointed guardian • Family member acting as surrogate. • Others who know the patient

27. Maine Law: Surrogacy (Title 18A §5-805)  Priority of surrogates (1) The spouse, unless legally separated; (1-A) An adult who shares an emotional, physical and financial relationship with the patient similar to that of a spouse; (2) An adult child; (3) A parent; (4) An adult brother or sister; (5) An adult grandchild; (6) An adult niece or nephew, related by blood or adoption; (7) An adult aunt or uncle, related by blood or adoption; or (8) Another adult relative…, related by blood or adoption, who is familiar with the patient's personal values and is reasonably available for consultation. (c)  If none of the individuals eligible to act as surrogate [above] is reasonably available, an adult who has exhibited special concern for the patient, who is familiar with the patient's personal values and who is reasonably available may act as surrogate.

28. Uncertainty about patient choices and preferences • Since 1966, there have been 16 studies that tested the accuracy of surrogate decision-makers • Compare surrogate and patient responses to hypothetical end-of-life scenarios • 151 scenarios; 2595 surrogate-patient pairs; 19,526 responses. • Overall accuracy? • 68% Shalowitz et.al., The Accuracy of Surrogate Decision Makers, Archives Internal Medicine 166 (Mar 13, 2006)

29. Advance Directives – The answer to uncertainty • Designate Power of Attorney for Health Care Decisions • Provide patient directives regarding medical care if unable to speak POA required to make decisions consistent with patient’s written directive

30. Old Maine Form I do or do not want my life prolonged if • I have an incurable and irreversible condition that will result in my death within a relatively short time; (2) If I become unconscious and to a reasonable degree of medical certainty I will not regain consciousness; or (3) The likely risks and burdens of treatment would outweigh the expected benefits

31. New Maine Form I do not want treatment to keep me alive if my physician decides any of the following is true • I have an illness that will not get better, cannot be cured, and will result in my death quite soon (sometimes reffed to as a terminal condition), Or (2) I am no longer aware (uncounscious) and it is very likely that I will never be conscious again (sometimes referred to as a persistent vegetative state).

32. New Maine Form I want to be kept alive as long as possible within the limits of generally accepted health care standards, even if my condition is terminal or I am in a persistent vegetative state.

33. Time for Discussion! Thank you Frank Chessa, Ph.D. Director, Clinical Ethics Maine Medical Center chessf@mmc.org 207-662-3589 David Seder, M.D. Assistant Professor of Medicine Tufts University School of Medicine Medical Director of Neurocritical Care Maine Medical Center sederd@mmc.org 207-662-2179