1. Ethics and End-of-Life Care Part 2: Autonomy and Futility Michael Wassenaar, PhD February 9, 2012

2. Review

3. Ethical goals What should the goals of end-of-life care be? How do we know these are the right goals?

4. “A decent or good death is one that is: free from avoidable distress and suffering for patients, families, and caregivers; in general accord with the patients’ and families’ wishes; and reasonably consistent with clinical, cultural and ethical standards. A bad death, in turn, is characterized by needless suffering, dishonoring of patient or family wishes or values, and a sense among participants or observers that norms of decency have been offended” -- Institute of Medicine. Approaching Death: Improving Care at the End of Life. Washington: DC: National Academy Press, 1997. 4

5. “[T]he duty to preserve life is not absolute, for we may reject life-prolonging procedures that are insufficiently beneficial or excessively burdensome.” “The task of medicine is to care even when it cannot cure.” “The free and informed judgment made by a competent adult patient concerning the use or withdrawal of life- sustaining procedures should always be respected and normally complied with, unless it is contrary to Catholic moral teaching.” -- USCCB Ethical and Religious Directives, 2009

6. Four principles of bioethics Beneficence Promoting the well-being of the patient Non-maleficence Protecting the patient from harm Respect for autonomy Respect for a patient’s personal agency and dignity Justice Fair distribution of resources and due process

7. Respect for autonomy The word “autonomy” derives from the Greek words for self (autos) and governance, or law (nomos). Autonomy: “self-rule that is free from both controlling interference by others and from limitations… that prevent meaningful choice.” Beauchamp and Childress. Principles in Biomedical Ethics 2001, p. 58.

8. In practice How does respect for autonomy translate into action?  Decision making capacity  Informed consent  Surrogate decision making  Advance Directives

9. Decision making capacity Does the patient have the capacity to make self- directed decisions? Patient must be able to: (1) understand the relevant information about proposed diagnostic tests or treatment (2) appreciate their situation (including their current medical condition, treatment options, and consequences of their decision) (3) use reason to make a decision (4) communicate their choice

10. Informed consent Informed consent is the process of ensuring the patient has the opportunity to make a free and meaningful choice. Informed consent requires: Agency: Capable of deciding Liberty: Free from coercion/controlling influence Information: Adequately informed

11. Surrogate decision making Surrogate decision making: (1) Respects patient autonomy, and (2) protects patients from harm. Three standards apply to surrogate decisions Expressed wishes Substituted judgment Best interests Studies suggest patients want their surrogates to exercise discretion NB: Surrogate decision making is stressful!

12. Advance directives AD helps ensure that care reflects patient’s goals and preferences in the event that a patient is unable to make health care decisions. Have ADs lived up to the hype? Shift to preparation of surrogates Gives families “permission” to withdraw

13. Medical futility “Do not seek to cure patients who are overmastered by disease.” - Hippocrates But what does futility actually mean? Physiological Quantitative Qualitative 13

14. Futility disputes Situations in which the patient or surrogate wants treatment, but the care team wants to stop. Responses: Legal, or quasi-legal, process (e.g, TADA, CCB) Surrogate replacement Communication 14

15. Mrs. O  90 yr-old  Hx of dementia, chronic kidney disease, pneumonia  Multiple hospitalizations  Minimally interactive  “downward trajectory”  “live as long as possible” 15

16. Thank you!