Who decides in health care? Philip Boyle, Ph.D. Vice President, Mission & Ethics

1. Who decides in health care? Philip Boyle, Ph.D. Vice President, Mission & Ethics www.CHE.ORG/ETHICS

2. Etiquette • Press * 6 to mute; • Press # 6 to unmute • Keep your phone on mute unless you are dialoging with the presenter • Never place phone on hold • If you do not want to be called on please check the red mood button on the lower left of screen

3. Goals for presentation • Understand the ethical characteristics of autonomy, self-determination, informed consent and capacity determination • Appreciate ethical limitations to self-determination in continuing care • Know what criteria should and should not be used to determine decision-making capacity • Explore a case consultation device and educational guide for capacity determination

6. Why use it? • Consistent evidence of supporting Mission • Evidence of Participation and Respect for Persons • Evidence that the Spirit has guided • Checks & Balances • Fosters habit of moral reasoning

7. When to use it? Formally • Decision that affect significant interests and populations • Opening Closing Services • Significant HR issues • Development of Strategic management tools Informally—all moral decisions

8. Mrs. F • Middle of night significant pain • Ask to go to hospital • Earlier said she did not want • CNA  RN  Supervisor • Supervisor calls son

9. Phase I: Preparation • Number of persons/groups impacted • Does it affect a department or the institution? • Duration of the impact • Does the impact last a few years or the span of the ministry? • Depth or weight of impact • Does the question affect the entire ministry or a portion of it? • Closeness to Core Values • Does the question directly jeopardize a value? • Degree of complexity • Past commitments • Does the question positively or negatively affect past commitments? • Relationship to strategic direction

10. Whose interests are affected? • Based on the nature of the issue, what other individuals or groups need to be part of the process? • What is the nature and frequency of the connection between the groups and the question? • What departments will be affected? • What departments might have insight? • What other entities will be affected by the decision? • Who would have insights to the Mission and tradition as it applies to this decision?

11. Phase II: Decision Making • Pray, reflect, identify question, and clarify authority of decision-making group. • Prayer and reflection are necessary because the group believes that it is God’s spirit that is guiding and perfecting the many decision-making talents brought to the table. A spirit of prayerful reflection centers the group on the fact that they are continuing the healing, transforming ministry of Jesus. • Identification of the question is essential because each decision maker will perceive and state the question differently. If the question is inaccurately identified at the outset of decision making, or not agreed upon, then the ensuing process will be counterproductive. • The decision-making group should be clear about its scope of authority.

12. Phase II: Decision Making 2. Determine primary and secondary communities of concern and their interests. • While there may be a large community of concern, not everyone in that community has the same interests. The decision-making group should assess the manner and degree to which a sub-community will be affected positively and/or negatively.

13. Phase II: Decision Making • 3. Fact gathering: What facts are necessary to answer the moral problem?

14. Phase II: Decision Making 4. Identify key moral commitments and values, as well as conflicts among them. • Identify the question in terms of trade-offs between one or more values. For example, consider your decision in terms of human dignity and identify the dignity trade-offs in the various options that you are weighing.

15. WHO DECIDES? • AUTONOMY • Self determination • INFORMED CONSENT • PROXY CONSENT • Advance directives • Surrogate decision making

16. SELF-DETERMINATION • I do as I please with my body • Why? • Fairness • Well-being • Idiosyncratic • Self-determination= image of God

17. A 55-year-old man has a 3-month history of chest pain and fainting spells. You feel his symptoms merit cardiac catheterization. You explain the risks and potential benefits to him, and include your assessment of his likely prognosis without the intervention. He is able to demonstrate that he understands all of this, but refuses the intervention.

18. A 28-year-old man presents to the emergency room with testicular torsion, in extreme pain. Emergency surgery is scheduled, but the urologist will be unable to see the patient for at least one hour. He asks that the patient not be given any pain medication, so that "consent can be obtained" when he sees the patient. Are the surgeon's concerns about informed consent valid? What ethical issues should be considered with regard to pain treatment for this patient?

19. SELF-DETERMINATION • Informed consent • Capacitated to make this decision • Information • Risks/benefits of all alternatives • In language PT can understand • Appreciative awareness • Free

20. A 36-year-old man presents for bone marrow donation for transplantation. His primary care physician contacts the anesthesiologist to report that the patient is extremely anxious about the procedure. The primary doctor requests that the anesthesiologist not discuss risks with the patient, since it might "scare" the patient into not providing bone marrow for a sick cousin. Should you curtail risk discussion? What should you tell this anxious patient?

21. Capacity • A 64-year-old woman with MS is hospitalized. The team feels she may need to be placed on a feeding tube soon to assure adequate nourishment. They ask the patient about this in the morning and she agrees. However, in the evening (before the tube has been placed), the patient becomes disoriented and seems confused about her decision to have the feeding tube placed. She tells the team she doesn't want it in. They revisit the question in the morning, when the patient is again lucid. Unable to recall her state of mind from the previous evening, the patient again agrees to the procedure. • Is this patient capacitated to decide? Which preference should be honored?

22. Capacity determination • Bad reasons • Disagree with provider of family • Change mind • Disabled • Periods of confusion • Age • Power of attorney for other reasons • Presumption of capacity • Decision specific

23. Exceptions to Informed Consent • A. Emergency: This exception applies when immediate treatment is required to preserve life or prevent a serious impairment, it is not possible to obtain the patient's consent (or someone authorized to act for the patient) and there is no information about the patient's prior wishes. (Dax) • B. Therapeutic Privilege: This exception applies when the health care professional believes that disclosure of information would likely result in severe and immediate injury. "Severe and immediate injury" is a strict standard. For example, the standard is met if the patient would suffer a heart attack or become suicidal as a result of the discussion.

24. Mrs. Grabner • 70 yr-old with spinal surgery • In & out of rehab • Dream to return home • Needs full time help at home • NH she could get Medicaid

25. Phase II: Decision Making 5. Establish priorities among commitments and values. • The moral commitments and values that deserve priority will flow from consideration of strategic goals/objectives, core values, historical commitments, the broader religious tradition, and special circumstances. • List each priority and provide the rationale for why it is a priority.

26. Phase II: Decision Making 6. Develop options that support the priorities. • Identify options that promote the moral commitments and values deserving priority. • Examine carefully the major options and evaluate the positive and negative consequences of these options on the identified priorities. • Consider not only the burdens and benefits of the preferred option but all of the options. • Do any of the options preserve and protect a majority of the identified priorities?

27. Phase II: Decision Making 7. In silence reflect and then listen to viewpoints. • To ensure that the Spirit has guided the discussion and to promote the voice of any reservations or opposition, a quiet time of reflection should be offered during which group members consider the discussion in light of the faith tradition and personal conviction. • Consider the following reflective questions: • Have I listened to the facts and appreciated the viewpoints of others? • Have I opened myself to the workings of the Spirit? • Have I sought the good of the entire ministry and then the particular good of others? • Has input been elicited from all decision makers?

28. Phase II: Decision Making 8. Gain consensus on decision. • Invite all members to express which option should be pursued and why. Discussion should be held until every member has had an opportunity to voice an opinion. • At the conclusion of the participatory decision making, estimate if a consensus exists, and if not, identify the points of disagreement and allow for additional conversation for clarification. • If a consensus is reached, identify the values that will suffer because of the choice. Discuss how to mitigate the harms.

29. Phase III: Follow Through Assign accountabilities to specific persons for each component to be realized. • Build a plan for monitoring and reporting with measurable outcomes. • Build a communication plan for community of concern with key messages and methods. • Build a plan that connects to the larger meaning and purpose.

30. Conclusions • Who decides? • Values protected: • well-being & self determination • Critical for continuing care • Capacitated individual • Presumption in capacity • Exceptions are not the rule!