Ethics, Decision Making and Dilemmas

1. Ethics, Decision Making and Dilemmas thanks to Dr .Ryan Liebscher, April 2010

2. Objectives • Learn the definitions of ethical principles • Recognize that ethical issues are raised by virtually every clinical decision • Understand the value of a team approach in ethical decision making with patient as primary focus • Recognize that every clinical situation is unique and presents unique choices between greater or lesser goods or evils • Develop an approach to decision making • Develop approach to ethical dilemma thanks to Dr .Ryan Liebscher, April 2010

3. Definitions • Morality – refers to a set of deeply held widely shared and relatively stable values within a community. • Ethics – philosophical enterprise involving the study of values and the justification for right and good actions. • Clinical ethics – the identification, analysis and resolution of moral problems that arise in the care of a particular patient. thanks to Dr .Ryan Liebscher, April 2010

4. Why? • The principles of beneficence, non-maleficence, autonomy and justice are the foundations of ethical health care delivery – which should be the way we consider all our actions and decisions. • The principles are usually balanced and weighed in any clinical decision making. thanks to Dr .Ryan Liebscher, April 2010

5. Definitions Beneficence – • To prevent or remove evil or harm and do or promote good. Nonmaleficence – • Do no harm – implies attention to burden vs benefit before proceeding with treatment and avoidance of futile treatment thanks to Dr .Ryan Liebscher, April 2010

6. Definitions Autonomy – • Self determination or the moral right to choose and follow ones own plan of life and action. Requires informed consent and a capable competent person. Justice – • Concept of fairness or what is deserved by people. thanks to Dr .Ryan Liebscher, April 2010

7. Definitions • Informed consent – Willing acceptance of a medical intervention by a patient after adequate disclosure of the nature of the intervention, its risks and benefits as well as alternatives with their risks and benefits. • Non abandonment – Do not leave patient without care thanks to Dr .Ryan Liebscher, April 2010

8. Definitions Competency/Capacity • The person can understand, reason, and evaluate the consequences of the decision and communicate it. • Matter of clinical judgment-no legal definition • May fluctuate with time and patient may be competent to make some decisions but not others. • If patient is impaired must obtain consent from proxy in accordance with local health and legal practices. Usually defers to family members whom make decision in keeping with known patient intentions. thanks to Dr .Ryan Liebscher, April 2010

9. Definitions Incapacity – Respect for value and dignity of others means they must be protected from making decisions that would: • result in harm • be different from decisions they would have made if capable thanks to Dr .Ryan Liebscher, April 2010

10. Definitions • Truthful Disclosure – • We have an ethical obligation to tell the truth to patients about their diagnosis and its treatment in a way that: • Uses measured and sensitive disclosure which respects autonomy • Is in accordance with the hearer’s emotional resilience and intellectual comprehension • Reinforces the patients ability to deliberate and choose but not to be overwhelmed thanks to Dr .Ryan Liebscher, April 2010

11. Definitions – Truth Telling Cont’d • Discuss matters that may be important in decision making in keeping with patients wishes • May ethically withhold truth if: • There is compelling evidence that disclosure will cause real and predictable harm • Patient state a preference not to be told the truth (often defer to family) • Your own safety??????? thanks to Dr .Ryan Liebscher, April 2010

12. Definitions – Truth Telling Cont’d • Common ethical dilemma • Practically, if patient unaware of diagnosis/ prognosis they are unable to participate in decisions and advanced care planning – ie., not based upon reality. • Can give rise to conspiracy of silence – prevents patient and family from having any meaningful sharing about feelings, worries, hopes. • But must be culturally sensitive -> family meeting. thanks to Dr .Ryan Liebscher, April 2010

13. Definitions • Paternalism – - Overriding or ignoring people’s preferences in order to benefit them or enhance their welfare. - Violates autonomy and is not beneficent but is non-maleficent. • A competent and informed person has the right to refuse treatment. thanks to Dr .Ryan Liebscher, April 2010

14. Definitions Futility – • When treatment is incapable of attaining the desired goal, it is not indicated. An intervention is futile if it prolongs dying and brings discomfort but no improvement. • Health care team has no obligation to provide futile treatment. • Withdrawing and withholding treatment are ethically and legally justifiable. thanks to Dr .Ryan Liebscher, April 2010

15. CPR at end of life in metastatic cancer • Pts dying with metastatic cancer or multisystem organ failure have near a 5-10% chance of surviving CPR and almost no chance of leaving hospital. Quality of life is not improved. • Burdens of CPR • -vegetative state 10% • -neurological and functional impairment 25% • -chest wall or intrathoracic trauma 25-50% • -Indignity, suffering, cost thanks to Dr .Ryan Liebscher, April 2010

16. CPR in this case: Is this futile? • Yes or No • What ethical principles are being respected or compromised • Non-malificence vs beneficence • Non-malificence vs patient autonomy thanks to Dr .Ryan Liebscher, April 2010

17. Definitions • Euthanasia • Goal of patient is death, patient has recruited someone other than their physician to assist with death. • Physician assisted suicide • Deliberate actions taken by a physician to terminate the life of a patient by the patients request. • Palliative sedation • Legally and morally acceptable alternative to above • If patient has refractory suffering, intentional sedation is performed to relieve suffering. • Many studies show this does not hasten death thanks to Dr .Ryan Liebscher, April 2010

18. How do you Feel • What do you think about Euthanasia and physician assisted suicide? • What ethical values are being respected or compromised? • Patient autonomy vs non-malificence • Professional autonomy vs beneficence • Beneficence vs non-malificence thanks to Dr .Ryan Liebscher, April 2010

19. Oregon Die with Dignity Act • 1997, law to enact physician assisted suicide (PAS) • Goal to respect autonomy, ? beneficence • Specific criteria including meetings with 2 physicians over at least 2 weeks. • Family input not needed but patient must be competent • Patient decides when lethal injection given. • 0.3% of registrants underwent PAS – control thanks to Dr .Ryan Liebscher, April 2010

20. Oregon Die with Dignity Act • Reasons for following through with PAS: • Losing autonomy 87% • Less able to enjoy 83% • Loss of dignity 80% • Loss of control of body function 59% • Burden on family 36% • Inadequate pain control 22% • Financial costs of treatment 3% thanks to Dr .Ryan Liebscher, April 2010

21. Ethics in Palliative Care Foundations of ethical practice are: • Effective Communication • Interdisciplinary team • Patient and goals/preferences/values as center • Have an approach to decision making/dilemmas thanks to Dr .Ryan Liebscher, April 2010

22. Decision Making • Moral duty to help with decision-making • Patients want to know how treatments will improve their quality or quantity of life and whether they will achieve goals • Explore what they want, fear, hope for and value: Define goals of care. • Place risks and benefits into context and likelihood of treatment achieving desired outcomes thanks to Dr .Ryan Liebscher, April 2010

23. Decision Making • Decision-making is a process not a one time event • May need several meetings, this takes time. • Multidisciplinary team involvement in these meetings helps to convey information, discuss alternatives, provide emotional and psychological support and provide expertise. • Team involvement also avoids giving ‘mixed messages’. thanks to Dr .Ryan Liebscher, April 2010

24. Decision Making Approach Example: Decision Making Matrix thanks to Dr .Ryan Liebscher, April 2010

25. Decision Making Matrix**Jonsen, Siegler, WinsladeClinical Ethics, Third Edition, 1992 thanks to Dr .Ryan Liebscher, April 2010

26. Decision Making Matrix**Jonsen, Siegler, WinsladeClinical Ethics, Third Edition, 1992 thanks to Dr .Ryan Liebscher, April 2010

27. Medical Indications • Medical Condition (Diagnosis, Prognosis) • Treatment • Past and present • Risks and benefits • Pain and symptoms • Past experience with the health care system • Functional level • Suffering • Reversible component of illness thanks to Dr .Ryan Liebscher, April 2010

28. Patient Preferences • Understanding of diagnosis and treatment • Goals of treatment – curative, palliative - spectrum • Goals for life • Physical • Psychological • Spiritual • Emotional • Social • Understanding of end of life/palliative care • How do you make decisions? • Health care proxy, living will thanks to Dr .Ryan Liebscher, April 2010

29. Quality of Life • What does quality of life mean to you? • What gives you meaning in life? • Consider physical, social, psychological, and spiritual issues. • Are there circumstances under which you would consider stopping all medication/treatment? • What sustains you at present? • What is achievable with regard to the patient’s preferences? • This will change with time. thanks to Dr .Ryan Liebscher, April 2010

30. Contextual Features • Terminal illness • Dying role vs sick role • Disposition: home, hospice, hospital • Available resources • Emotional • Physical • Fiscal/economic • Fairness and equality in distribution • Who does what? • Is everyone comfortable with this plan? thanks to Dr .Ryan Liebscher, April 2010

31. Ethical Decision Making • Gather information using Decision Making Matrix • Have a family meeting with interdisciplinary team. thanks to Dr .Ryan Liebscher, April 2010

32. 9-Step Approach to Effective Formal Communication • Start the meeting • Agree on purpose • What does patient/family know/understand? • What information is necessary for decision-making? • Share the information/respond to emotions thanks to Dr .Ryan Liebscher, April 2010

33. 9-Step Approach to Effective Formal Communication • Discover goals/hopes/expectations/fears: “Values History” • Address their needs/empathy • Develop a plan • Follow up thanks to Dr .Ryan Liebscher, April 2010

34. Case 1 • Mr K 55 male with known Hepatitis C, presents with severe back pain, leg weakness and is diagnosed with acute spinal cord compression. Neurosurgery consult and biopsy reveal hepatocellular carcinoma. No functional recovery in spite of steroids and radiation -> paraplegia. ECOG 4, jaundiced in liver failure. 2 daughters live abroad; his partner is by his side. thanks to Dr .Ryan Liebscher, April 2010

35. Case Mr K Cont’d • Post op day 7 develops decreased Level of consciousness and dyspnea • O/E – GCS: 10/13, HR 150 regular, RR 35, RML bronchial breath sounds and wheeze. • Assessment – sepsis from aspiration pneumonia. • Plan? thanks to Dr .Ryan Liebscher, April 2010

36. Approach • Gather information - Decision Making Matrix • What are his goals of care/preferences? • Medical information – prognosis, options, likely outcome. • Quality of life – Is he suffering? • Contextual features – He is not competent. Has he expressed future wishes? Who guides decision making? • Family Meeting thanks to Dr .Ryan Liebscher, April 2010

37. Assessment • What are his goals of care/ preferences? His partner of 10 years provides: - Does not want life prolonging therapy (previously stated) • Does not want to suffer • But had wished to see daughters before death • Medical information: - Advanced hepatocellular carcinoma, not candidate for further disease modifying therapy. - SCC-> Paraplegia irreversible - Septic – reversible? thanks to Dr .Ryan Liebscher, April 2010

38. Cont’d • Quality of Life – • Very upset at paralyzed status • Currently dyspneic, febrile, diaphoretic, restless. • Will treatment of sepsis restore his quality of life? Is this reversible? • Contextual features – • It becomes evident that for him to see daughters is extremely important. • They also feel they need to see their dad before he dies – some complicated family issues. • The team has mixed feelings about what to do thanks to Dr .Ryan Liebscher, April 2010

39. Action • Family Meeting • The nurse makes a phone call to daughters, phone placed to ear of father so they could tell him they love him -> he looks as though he will die within hours. They decide to leave that night for Canada. • Decision with family and team to make sure we: • keep him comfortable and • aggressively treat sepsis with IV fluids, antibiotics in hopes to prolong life so his daughters may make it to the bedside. thanks to Dr .Ryan Liebscher, April 2010

40. Outcome Cont’d Progress • Over next hours GCS decreases to 7/13 • Patient comfortable on regular opioid dosed every 4 hours with breakthrough for dyspnea. Also receiving haloperidol for agitation/delirium. thanks to Dr .Ryan Liebscher, April 2010

41. Outcome Cont’d • Next morning patient is alert, GCS 13/13 with good urine output, normalized vital signs. • Daughters arrive that night. • Have good visit, closure. Family very grateful. • Patient stable alert for 10 days. Gradually condition declines, agreement with patient, daughters and partner to keep comfortable and to provide end of life care. • Dies peacefully 1 week later. thanks to Dr .Ryan Liebscher, April 2010

42. Ethical Dilemma • This can be very challenging • Is a situation that requires a choice between ethical options that are or seem equally unfavorable or mutually exclusive • This needs a formal process to determine how to make the best decision thanks to Dr .Ryan Liebscher, April 2010

43. Ethical Dilemma • Here there are pros and cons to each ethical principle • Our challenge is to recognize which clinical options are “ethically acceptable” and then ranking them to make a decision • The team may have very different ideas • This is not about the right answer or decision but the best decision given the information available thanks to Dr .Ryan Liebscher, April 2010

44. Approach to Ethical Dilemma* • Identify ethical question/dilemma • Gather necessary information • Medical • Social/Quality of life • Preferences • Contextual factors • Analyze information and generate options • Weigh risks/benefits and prioritize arguments and make recommendation • Implement recommendation • Provide follow up and evaluate the outcome thanks to Dr .Ryan Liebscher, April 2010

45. Case 1 • Mr K, 56 yr male with inoperable metastatic gastric carcinoma and pulmonary metastases presents with severe dyspnea. ECOG 4. Family states they do not want him to know prognosis. • What is the approach? thanks to Dr .Ryan Liebscher, April 2010

46. Approach to Ethical Dilemma • Identify ethical question/dilemma • Gather necessary information • Biological • Social/Quality of life • Preferences • Contextual factors • Analyze information and generate options • Weigh risks/benefits and prioritize arguments and make recommendation • Implement recommendation • Provide follow up and evaluate the outcome thanks to Dr .Ryan Liebscher, April 2010

47. Approach • Articulate/Identify ethical question/dilemma Autonomy vs beneficence Autonomy vs non malificence Beneficence vs non malificence Non malificencevs beneficence Family rights vs patients rights vs team rights thanks to Dr .Ryan Liebscher, April 2010

48. Approach to Ethical Dilemma • Identify ethical question/dilemma • Gather necessary information • Medical • Social/Quality of Life • Preferences • Contextual • Analyze information and generate options • Weigh risks/benefits and prioritize arguments and make recommendation • Implement recommendation • Provide follow up and evaluate the outcome thanks to Dr .Ryan Liebscher, April 2010

49. Gather Necessary Information • Medical • Diagnosis and course of illness • Prognosis • Treatments available with risks/benefits • Status of the patient • Clinical judgment Our case: No further disease modifying therapies, approaching end of life, prognosis 1 week; patient is more comfortable than on admission, has had some good days;is competent. thanks to Dr .Ryan Liebscher, April 2010

50. Obtain Necessary Information • Social • Ethical • Professional/Institutional • Legal • Cultural • Financial Our case: Team feels ethical principles of autonomy and beneficence are being compromised. Eldest son spokesperson; family feel that patient will lose all hope if told. Need to discuss with eldest brother whom has not yet arrived. thanks to Dr .Ryan Liebscher, April 2010