Ethical Case Studies in Hospice and Palliative medicine

1. Ethical Case Studies in Hospice and Palliative medicine MEDICAL ETHICS • A set of moral principles that apply values and judgments to the practice of medicine. • GOAL of this lecture: to strengthen your framework for successful moral decision-making and conflict resolution in complex medical situations. • Cultural basis cannot be completely removed • Religious/spiritual underpinning may be minimized but cannot be completely removed either

2. Medical Ethics: Personal inputs • Each person has a moral compass • Religion has a part: Journal of Medical Ethics study (Dr Seale) reported Physicians who rated themselves as “very religious” were 4 times less likely to include patients and families of patients in decision-making regarding care at end of life. • Jehovah Witness, Catholic • Culture has a role: Culture is a multidimensional phenomenon influencing ethical decisions, subconscious values and attitudes learned early in life, influence decision making even despite day to day medical culture’s homogenizing effects.

3. Ethical Consensus • “In increasingly pluralistic societies, rapid changes in technology, institutional structures…make it more difficult to reach national consensus on ethical or moral values” Jaffe, Emily and Knight, Carol. “Ethical & Legal Dimensions of Treating Life-Limiting Illness” Unipac 6, Third Edition, Hospice and Palliative Care Training for Physicians.

4. HIPPOCRATIC OATH: 5th century BC • I swear by Apollo, the healer, Asclepius, Hygieia, and Panacea, and I take to witness all the gods, all the goddesses, to keep according to my ability and my judgment, the following Oath and agreement: • To consider dear to me, as my parents, him who taught me this art; to live in common with him and, if necessary, to share my goods with him; To look upon his children as my own brothers, to teach them this art, without charging a fee; and that by my teaching, I will impart a knowledge of this art to my own sons, and to my teacher's sons, and to disciples bound by an indenture and oath according to the medical laws, and no others. • I will prescribe regimens for the good of my patients according to my ability and my judgment and never do harm to anyone. • I will not give a lethal drug to anyone if I am asked, nor will I advise such a plan; and similarly I will not give a woman a pessary to cause an abortion.

5. HIPPOCRATIC OATH: 5th century BC 5. I will preserve the purity of my life and my arts. 6. I will not cut for stone, even for patients in whom the disease is manifest; I will leave this operation to be performed by practitioners, specialists in this art. 7. In every house where I come I will enter only for the good of my patients, keeping myself far from all intentional ill-doing and all seduction and especially from the pleasures of love with women or with men, be they free or slaves. 8. All that may come to my knowledge in the exercise of my profession or in daily commerce with men, which ought not to be spread abroad, I will keep secret and will never reveal. 9. If I keep this oath faithfully, may I enjoy my life and practice my art, respected by all men and in all times; but if I swerve from it or violate it, may the reverse be my lot.

6. THE FIELD OF MEDICAL ETHICS • Endless analysis • Endless debate • Black and White vs. GRAY Many ethical principles are not in themselves really debatable: EXAMPLE • Respect for the privacy of the patient But become problematic in specific circumstances Many ethical dilemmas occur when two ethical principles collide

7. Ethical principles in hospice and palliative care • Basic ethical principles have changed over time • Hippocrates guidelines for physician behavior • AMA code of ethics first published in 1847 to guide physicians. • Other cultures have traditions which differ • Western Civilization: Christian based ethics • American Society: Emphasis on Individual rights • Challenge is to find ethical framework that is not heavily culture specific or based in a specific religion. • Moral relativism vs. Moral imperialism

8. Ethics: FOUR principles • Principle of AUTONOMY American society has placed great weight on the freedom of choice of the individual. Each patient as a competent adult, who should be given full information to understand the situation and the options, may choose his own course of action. Does not mean he may choose treatment which is not offered such as demanding surgery for lung cancer when it is not recommended. It is understood that the individual is the only one in his place, with his knowledge of his life, history, and values. IMPORTANT DRIVER FOR HOSPICE MOVEMENT

9. Ethics: FOUR principles 2. Principle of Beneficence Doctor is expected to act and advocate in the best interest of the patient despite any influences to the contrary. Physician must act to aid acutely injured, strive to cure illness, provide comfort to dying. Do good, act in the best interest of the patient. One of the most important driving principles of ethical behavior for physicians.

10. Ethics: FOUR principles 3. Principle of Non-Maleficence “First do no harm” Any action to be taken should be free of potential harm to the patient. Physician may recommend treatment which has some risk if the alternative is worse. Important counter to excesses of beneficence. Previously felt to limit physician ability to control pain with sedating or opioid medications.

11. Double Effect • An action that is good in itself that has two effects—an intended and otherwise not reasonably attainable good effect, and an unintended yet foreseen negative effect. • One need not always abstain from a good action that has foreseeable negative effects.

12. Ethics: FOUR principles 4. Principle of JUSTICE Synonymous with FAIRNESS Fair distribution of scarce resources (distributive justice) Respect for people’s rights (rights based justice) Respect for established law (legal justice)

13. JUSTICE • Equality is at the heart of justice, but not all. • People can be treated equally but unjustly. • Treat equals equally (horizontal equity) but unequals unequally, in proportion to the relevant inequality (vertical equity) • Fruit vendor has 2 incidents of apples being stolen. • Stolen by poor man who is hungry • Stolen by middle class teens who laughingly throw them at each other. • Is a 200 dollar fine or 10 days in jail for theft of low value item fair? How could we modify it? • How does the principle of justice come into play in medicine?

14. Case of young Patient with expensive medications Rhonda B. 39 yo woman transferred into our area from Ann Arbor. She has been prescribed expensive medications for her idiopathic pulmonary fibrosis and pulmonary hypertension, but is not able to afford them. She has been in and out of the U of M hospital 3 times in last 4 months. She has continuous oxygen and MKPI of 50%. Dyspnea and cough are disabling. She states that she has been repeatedly told her prognosis is less than one year, especially if she continues to be noncompliant with medications. She asks for hospice admission. What is the source of conflict here? What should the hospice doctor do here?

15. Limitations to Autonomy • Parens Patriae “The state as parent," a common law principle, which authorizes the state to act as a benevolent parent to protect its citizens who are impaired and cannot protect themselves. It allows for government entities, including APS, to initiate both voluntary and involuntary services for individuals who cannot protect themselves. • Police Power The right to autonomous decision-making must also be weighed against the State's interest in preserving and protecting life and property. The principle of police power gives police the authority to curtail and control certain personal behaviors to protect the public welfare, as well as individuals. Police may intervene to protect individuals and the community from physical harm or the threat of harm, loss of assets and property, and public nuisances.

16. “God save us from excesses of beneficence” Examples of beneficence vs. autonomy • Acute Paraplegia: often results in depression and even suicidality at first, but with time the loss is assimilated. __________________ supports patient through the period of despondency because it is temporary. • Do we agree with this and why? • Chronic vent unit: Patient with nonreversible pulmonary disease may be kept alive years, even when he repeatedly hints he wishes to die. Pain and specific symptoms are controlled, but perceived quality of life is poor. Patient is kept on ventilator for his own good. ___________________ overrides autonomy. • Do we agree with this and why?

17. Beneficence vs. autonomy? Nursing home setting: Patient has little awareness of situation, has no ability to find food, prepare it or bring it to her mouth, but has ability to swallow. American current cultural norms insists such person should be fed by hand or by whatever means so that she be kept from losing weight. What is the principle at work here? Do we agree with this?

18. Principle of human dignity/value of life • Can be used to advocate for procedures that prolong life even when subjectively uncomfortable or no consciousness • Hospice care has a philosophical underpinning that speaks against the artificial and uncomfortable measures that are often recommended for the purpose of extending life.

19. TUBE feeding/parenteral nutrition • Often advised during treatment of curable illness or early in treatment phase for noncurable illness. • When return to better quality of life or substantial prolongation of life is expected. • Prolongs survival for some patients with neurological degenerative diseases such as Alzheimers, ALS, MS. • Becomes ethical dilemma later in course of disease

20. Principle of Honesty/Truth telling Contemporary American culture puts premium on this also. Patient must be informed of his diagnosis and prognosis unless he specifically requests not to be told. Discussion should be in appropriate language, appropriate timing and allow appropriate time to consider if choices are to be made. Patient may designate a surrogate who will be given full information for decision making purposes. If the patient is not capable of making decisions a person may be designated to do so, may be a family member or legal guardian.

21. Legal terms • Mental capacity: =Competence but a less global term to refer to specific skills or abilities that a person possesses. • Consent: when a person is given full information about choices and is free to choose, he may chose to follow/agree with a proposal from another person. • Compliance: a term indicating following the direction of another (following doctors orders) • Undue influence: when a person in a stronger position uses influence to get a weaker person to agree to something they ordinarily would not want to do • Duress: coercive undue influence using threat of harm

22. Case 1 • 89 yo wm with h/o hospitalization for pneumonia and COPD living in house he had built with adult son. Immediately upon admission altercations and disagreements drove the patient to ER 3 times in one week. Pt’s son threatened to harm pt and pt brandished barbecue fork at hospice homemaker. Both son and patient seemed to be at fault. Son is an unemployed engineer, who appears to have some mental illness and substance abuse. • Admitted to hospital due to breakdown in caregiver relations, pt was polite, kind, and gentlemanly, but did show mild deficit in short term memory. Hospital applied for a legal guardian and one was appointed to make decisions for the patient. Patient wished to return to his home.

23. Case 1 Released again into the son’s care, patient returned home, where the two continued to feud. Over the next four weeks RN finds pt not fed or properly clothed, no food in the home, and fecal soiling in living room. Patient appears drugged and is rapidly losing weight. Son states pt cannot be trusted and might harm him in the night. He is putting haldol in patient’s drinks. What should the hospice team do? Guardian is notified that the son is not providing proper care for patient and against the wishes of both, pt is moved to assisted living facility.

24. Case 1: outcome In assisted living, patient no longer requires sedative medications, weight stabilizes, but he continues to be wheelchair bound and forgetful. Despite his medical stabilization, he appears depressed. He often states his wish to go home to live in his own house again. When strength allows he packs his bags in hopes of leaving, and is disappointed when he is not allowed to go home. Son also asks repeatedly for father to return home. Guardian and hospice staff hold fast to the decision to keep him in AL. Pt’s doctor says, “We added a reel to his life, but it’s a reel of blank tape.”

25. Case 1: Conclusion • Ethical issues: principle of beneficence vs. autonomy • Autonomy was overshadowed because patient was truly incompetent to make decisions. • Legal guardian followed the wishes of the patient to allow him to return home from hospital to his son’s care where it was demonstrated to be unsuitable, but did not allow him to go back a second time.

26. Terms Guardian MDPOA Competent Capacity Further reading: Michigan Guardianship and Conservatorship Handbook.

27. PRACTICAL Questions: • WHAT IS A PATIENT ADVOCATE DESIGNATION? • A patient advocate designation is a voluntary, private agreement by which an individual of sound mind chooses another individual to make care, custody, and medical treatment decisions for the individual making the designation. (MDPOA) • The document must be signed and witnessed to be legally binding. The individual can revoke the agreement at any time. The document is not filed with the court; the court is not involved unless a dispute arises.

28. PRACTICAL Questions: What can a nonfamily legal guardian decide for patient? Where to live. (location of treatment) How to spend money. What they may not legally decide: To refuse medical treatment To stop life sustaining medical treatments Can a family member MDPOA or next of kin make decisions re withdrawal or refusal of care? YES in most cases if pt is terminal or on Medicaid.

29. PRACTICAL Questions: • HOW DOES A GUARDIAN DIFFER FROM A CONSERVATOR? • A conservator is appointed by the court to handle investments and other assets of an individual who cannot effectively manage them. Unlike a guardian, a conservator does not have the right to make medical decisions or determine where the individual lives. • An individual can have both a guardian and a conservator, the same or different persons.

30. The ETHICS COMMITTEE • Every day decisions involve ethics and people naturally use their own ethical framework to solve them. Only 5% of less of the time are decisions more thorny and more difficult. • The Ethics Committee: A Resource for difficult situations • Question is not “Should we do what is right or what is wrong?”, but “Which of these choices is the better good?” • Actually often cases referred to an ethics committee are not really ethical disagreements but failures of communication. • Part of the role of the committee is conflict resolution. • May informally discuss with committee member also.

31. The ETHICS COMMITTEE • Education • Policy setting and review • Case Review: Not decision makers, but advisors, assisting decision makers

32. The ETHICS COMMITTEE • Identifies and analyzes the nature of the value uncertainty • Facilitating the building of consensus • On either the substantive morally optimal solution • Or who should be allowed to make the decision

33. The ETHICS COMMITTEE • Can help to Mediate, absolve and resolve • In general they don’t draw on either substantive or procedural protocols, they wing it • Try to find missing pieces, pick up the pieces, and make peace among opposing sides • Reinterpret • Try to convert moral distress into moral insight

34. Case 2 • Pt is a 49 yo wf with end stage alcoholism. At age 23 she suffered a head injury in a car accident, and her friend states that is what made her impulsive and impaired her judgment. The friend tells of a sad life of poor choices, chronic depression, and many losses. Now she has intermittent symptoms of hepatic encephalopathy and was recently hospitalized with GI bleeding and hepatorenal syndrome. Pt was sent home from the hospital to the care of her 20 year old developmentally delayed son and a close friend who stops in daily. The friend is MDPOA. The patient is very debilitated and weak. She is mostly bedbound, up only to bedside commode. At initial evaluation, it appears patient is ‘preactive’ with a prognosis of days to weeks. Son does giver her alcohol to drink daily as desired.

35. Case 2 • Physician (but not other hospice staff) questioned the ethics of allowing a mentally impaired family member to be the primary caregiver and give her alcohol. Is this the equivalent of assisted suicide? • Pt has not ever been able to quit drinking, has no interest in abstinence or rehabilitation. • She has no other diagnosis than alcoholism for which there is available treatment which might prolong her life. • What should the hospice physician do?

36. Case 2 • Hospice physician calls on Ethics committee. Ethics committee convened to evaluate the case and make a recommendation to the hospice. • Review of case per Ethic committee took less than 3 days to obtain.

37. Case 2: Ethics Committee Findings Is it ethical to assist such a family and patient by providing hospice care (with no other terminal disease than alcoholism) or whether we ought to limit our involvement to advising the family to stop assisting the patient in drinking alcohol, and recommend alcohol treatment? The committee identifies end-stage alcoholism as appropriate and eligible life-limiting illness for hospice care. Evidence of functional, physical and behavioral decline are consistent with eligibility. Clinical Issue: Ensure Eligibility. • The team’s responsibility is to educate the patient/family about their options for care, not to give advice regarding their choices. Clinical Issue: Provide Education. Ethical Principle: Respect Autonomy.

38. Case 2: Ethics Committee Findings 2. We might say it is the choice of the adult patient to die of alcoholism, but is that a competent choice when they are inside the addiction? • The committee believes that being alcoholic and being competent are not mutually exclusive. Competent people are allowed to make bad decisions. • Ethical Principle: Respect Autonomy.

39. Case 2: Ethics Committee Findings • Is it OK for the family to hand the patient alcohol to drink, is it different or the same as to wheel them in a wheelchair to the top of a cliff? • The family’s behavior is not the business of hospice. The hospice team’s role is not to judge the actions of patients or families. • Ethical Principle: Respect Autonomy.

40. Case 2: Ethics Committee Findings Is the answer dependent on whether they have previously tried and failed in rehab? • No. If the patient is competent and aware that rehab is an option now and does not choose it, their history is not relevant. We have to respect that people do the best they can, given what they have in life. Ethical Principle: Respect Autonomy

41. Case 2: Conclusion • The Ethics Committee feels that patient autonomy is a primary ethical principle upon which hospice care is founded, and in this case overrides the paternalistic impulse of the principle of Beneficence which might justify the idea that patient should be forced to pursue rehab treatment against her wishes. • Hospice doctor is only slightly more comfortable with proceeding, but is not so moved as to reassign the case. • Patient was allowed to be cared for at home with extensive hospice support. She did die peacefully at home within 3 weeks.

42. Case 3: ever or never competent? CeCe is a 37 yo woman whose difficulties with the medical world started at age 5 when she developed precocious puberty. She was taken from one hospital to another for rounds of tests and treatments, no one ever discovering the cause of her unusual situation. Her mother had a history of substance abuse and emotional instability which in retrospect clearly played a large role in the serious emotional instability that developed in the patient. At 12 she ran away and was later found to be a prostitute in New York City. Her history of substance abuse, victimization, and medical noncompliance became lengthy. At age 25 she began using prescription methadone rather than illicit drugs and alcohol. She had two children and a divorce, had violent altercations with her two daughters leading to restraining orders against at least once each.

43. Case 3 Patient developed colonic obstructing adenocarcinoma at age 35 and had a partial colectomy. No evidence of metastatic disease, but she neglected her follow up appointments. After the surgery she developed enterovaginal and entero vesicular fistulae which caused chronic discomfort, vaginal seepage of liquid feces, and chronic urinary tract infections. Despite the discomfort, she did not follow up with plans for treatment due to fear and distrust of the medical system. At this point she was chronically depressed, living alone, unable to support herself. Had minimal family support, methadone habit.

44. Case 3 In December 2010 she went to ER due to shortness of breath and was found to have some pulmonary infiltrates which could be infection, but were said to be suspicious for metastatic cancer. With her h/o colon cancer, poor quality of life, and dislike of procedures, she refused the biopsy and referred herself to hospice with presumptive diagnosis of metastatic colon cancer. She certainly did need help. The majority of her problems were not fixable. She was certainly uncomfortable. WHAT SHOULD THE HOSPICE DOCTOR DO NOW?

45. Case 3 Pt was on hospice two months without significant change in her status when a repeat CT scan was obtained. No evidence of the prior infiltrates found. WHAT SHOULD THE HOSPICE DOCTOR DO NOW?

46. Case 3 Pt was re-assigned to a local primary care doctor and discharged from hospice care. With much difficulty for the hospice staff. Three months later she called again. She had been in ER again and had pneumonia. Could she be readmitted to hospice care? No. The hospice team felt very sorry not to be able to help her. All the time we had known her, she was chronically unhappy, did not want any more medical intervention for any reason, and was whole heartedly in favor of DNR.

47. Case 3 October 2011: Patient herself called from hospital and stated she had been in ICU and wanted to be released to hospice care. After evaluation of the situation it was found that she had been admitted in an obtunded state suffering from new acute leukemia. Her daughters had agreed to a rapid induction chemotherapeutic regimen which was now in day 3. Patient called again saying that she was bleeding from her mouth and nose and did not want to be in hospital any more. Asked for hospice admission instead! She said the oncologist there would not allow her to leave and was going to get a psychiatric consultant to declare her incompetent.

48. Case 3 • Patient has a terminal disease • Patient has requested to stop treatment due to long standing fear of the medical system, and pre-existing poor quality of life leading to desiring no life prolonging measures. • Patient had a history of victimization, of poor choices and poor judgment. • Hospice physician called oncologist who said that the patient had suddenly gone out of her mind and it was inconceivable to stop the chemotherapy now, tantamount to suicide. He stated that he would not certify her for hospice care and was going to have her declared incompetent immediately to halt her from going to hospice. • WHAT SHOULD THE HOSPICE DOCTOR DO NOW?

49. Case 3 Friday afternoon a psychiatric consultant came to see her. She refused to speak to him. He wrote orders to transfer her to the locked psychiatric ward by force if necessary. Over the weekend she was kept in the locked ward. Monday morning the oncologist spoke to the patient and she agreed to go back on chemotherapy. She was transferred out of the locked ward. Chemotherapy was continued. The hospital planned to pursue appointment of a legal guardian.

50. Conclusion Patient died in ICU in hospital having spent the last 4 weeks of her life in hospital. What ethical issues were at work here? What were the conflicting principles?