1. Ethics in Palliative Care Maristela Garcia, M.D.

2. Objectives To review the core principles of clinical ethics To be familiar with paradigm cases that may provide guidance in clinical practice To understand the role of ethics committees

3. Ethics in clinical practice: an illustrative case

4. Mr. Jones is an 78 year old man who presented to Dr Smith’s office with a complaint of worsening hand tremors and increasing difficulty with gardening, his favorite pastime. His exam was significant for rest tremors in his hands, cogwheeling & a shuffling gait. After going over his findings with Mr. Jones, Dr Smith discussed the recommended treatment as well as it potential adverse effects. Mr. Jones expressed his understanding, and agreed with the treatment plan, however he wondered if he should have additional testing such as a CT scan. Dr Smith explained that it is not a necessary procedure for his condition. Mr. Jones started new medication, and his tremors improved significantly to his satisfaction..

5. 4 core principles in bioethics Beneficence Nonmaleficence Respect for Autonomy Distributive Justice and Fairness Beauchamp TL, Childress JF. Principles of Biomedical Ethics, 4th ed. New York: Oxford University Press, 1994

6. Beneficence -the obligation to act for the benefit of the patient Nonmaleficence -“do no harm” Autonomy -respect for the ability of the patient with decisional capacity to act or make a decision voluntarily Justice and Fairness - the principle that requires fair allocation of healthcare resources

7. Over the course of time, Mr. Jones’ Parkinson’s Disease progressively worsened despite maximal medical therapy. He became dependent in all of his ADLs. After his last failed experimental surgery to treat his PD, Mr. Jones informed Dr Smith that when the time comes that he becomes dependent in all of his ADLs, by no means would he allow the placement of a feeding tube or any artificial means of nutrition. He requested that all measures to keep him comfortable be undertaken at that point, even if it meant he will not live longer.

8. Respect for Autonomy the patient has the right to accept or refuse treatment recommendations the physician’s treatment recommendation made in the patient’s best interest cannot override the patient’s preferences

9. “Every human being of adult years and sound mind has a right to determine what shall be done with his own body: and a surgeon who performs an operation without his patient’s consent commits an assault for which he is liable” -Schloendorff vs. Society of New York Hospital, 1914

10. Decision-making capacity The ability to express a choice The ability to understand pertinent information The ability to appreciate the significance of one’s decision, it’s positive and negative consequences The ability to reason, as it applies to one’s choices

11. Last night Mr. Jones was admitted by the hospital physician, Dr Brown, for fever, confusion, and shortness of breath. He was found to have aspiration pneumonia, dysphagia, severe weight loss, and a diagnosis of end-stage Parkinson’s Disease. This morning you were asked by Dr Brown to see Mr. Jones for a palliative care consult. His wife was at the bedside, distraught. She asked you to “Do everything you can, otherwise he is going to suffer and die!”. She also asked that Mr. Jones get a feeding tube, “Look at him, he is starving!”

12. Upon further discussion with Dr Brown, you were informed that his primary MD, Dr Smith conveyed to the team what Mr. Jones’ wishes were for end of life care, during his last visit 3 months ago. His last visit note documented the following: “No heroic measures”. You also learned that Mr. Jones does not have a written advance directives and has not executed a power of attorney for health care.

13. Surrogate Decision-Makers 1.“Agent” -an individual designated by the patient to make health care decisions in his behalf in a document such as a Power of Attorney for Health Care (DPAHC) or other advance directives -required to make decisions in accordance with the patient’s known wishes, if any, to the extent that such are known to the agent

14. 2. Conservator or Guardian -an individual appointed by a court to make health care decisions for a patient who lacks capacity -under California law, the standards that a conservator or guardian must use, must be similar to those of the DPAHC (with rare exceptions) 3. Closest Available Relative or Close Friend -not expressly addressed in California statutes; no line of succession recognized

15. Surrogate Decision-Makers Patient’s preferences are known? Surrogates must use such knowledge in making decisions (substituted judgment) Patient’s preferences not known? Surrogates must make decisions based on the best interest of the patient

16. The role of the conservator: when the patient is conscious but lacks decisional capacity The standards that a conservator or guardian must use, must be similar to those of the DPAHC with the exception that the conservator may withhold or withdraw artificial nutrition and hydration only if there is clear and convincing evidence of the patient’s wish for withdrawal

17. Following the discovery of Mr. Jones’ lack of written advance directives, his prior discussions with his PMD regarding end of life care preferences, and the opposing wishes of his wife, his hospital physician, Dr Brown decided to obtain a consultation with the hospital’s Ethics Committee. In the meantime, you also recommended that a meeting be held with the wife and members of the care team, preferably including his primary MD Dr Smith, to address the wife’s concerns, expectations, and to review prognosis and treatment recommendations.

18. Ethics Committees Mandated by JCAHO to provide a mechanism to address ethical conflicts Develop institutional policies for matters such as DNRs, informed consents, and management of nonbeneficial care Serve as an advisory group on clinical cases involving ethical dilemmas Review cases at the request of health providers, patient, family, or surrogates

19. A meeting was subsequently held involving Mr. Jones’ wife, their 3 children, his hospital physician Dr Brown, his primary MD Dr Smith, his neurologist, nurse, social worker, and the Palliative Consult team. After exploring the family’s understanding of Mr. Jones’ clinical condition, it was learned that Mrs. Jones was unaware of her husband’s poor prognosis. She found it agonizing to watch her spouse having difficulty breathing, and she was fearful that he is suffering from prolonged starvation.

20. After acknowledging Mrs. Jones’ distress, Dr Brown gently discussed his findings, poor prognosis, and the treatment recommendations that will minimize his suffering and allow him to be comfortable for the remainder of his days. Dr Smith also discussed with the family and the care team Mr. Jones’ prior oral wishes regarding end of life care. Mr. Jones’ son recalled having a similar conversation with his father. Mrs. Jones and their 3 children expressed understanding of Mr. Jones’ current clinical condition and prognosis. Mrs. Jones inquired how to proceed with treatment that would minimize her husband’s suffering and provide him with maximal comfort.

21. Dr Brown’s recommendation to the Ethics Committee was to proceed with palliative treatment for Mr. Jones with no artificial means of nutrition and hydration to be used, in accordance with his oral wishes. After deliberating the relevant issues of the case, particularly with respect to Mr. Jones’ prior expressed oral wishes, the Ethics Committee concurred with the treatment team’s recommendation. The family was unanimous in their decision to proceed with palliative care. No lawsuit was filed in court to contest the decision. Mr. Jones passed away peacefully in his home under hospice care three weeks later.

22. “Clinical ethics is seldom a matter of deciding between ethical versus non-ethical, between good and right versus bad and wrong; rather it involves finding the better, most reasonable solutions among the relevant options.” - Jonsen AR, Siegler M, Winslade WJ. Clinical Ethics [1]

23. Discussion Review your hospital policies on DNR, Withholding and Withdrawing medical Inappropriate life sustaining treatment Review process on ethics consultations in your hospital Discuss any current cases or previous cases with ethical concerns

24. Ethics Consult Ethics consult can be from any source. ▫Patients, family ▫Physicians, consultants ▫Nurses, social workers, chaplain etc. Remember ethics will not make clinical decisions, it is still the physician responsibility Also it is the physician responsibility to write all orders

25. References 1.Jonsen AR, Siegler M, Winslade WJ. Clinical Ethics, 7 th ed. New York: McGraw-Hill; 2010. 2.Beauchamp TL, Childress JF. Principles of Biomedical Ethics, 4 th ed. New York: Oxford University Press, 1994 3.Mareiniss DP, Casarett D.Principles of Bioethics in Walsh D. Palliative Medicine, 1 st ed. Philadelphia, Saunders, 2008, pp 89- 93. 4.Joint Committee on Biomedical Ethics of the Los Angeles County Medical Association and the Los Angeles County Bar Association. Guidelines for Physicians: Forgoing Life-Sustaining Treatment for Adult Patients. 2006. 5.The ethics of surrogate decision making. Rich BA. West J Med. 2002 Mar; 176(2):127-9. 6.Eisenberg JB, Kelso JC. The Robert Wendland case Western Journal of Medicine. 2002 Mar; 176(2)124 7.Lachman VD (2010). Clinical Ethics Committees: Organizational Support for Ethical Practice. MedSurg Nursing, 19 (6), p351-353.