Making Decisions for Incompetent Patients

1. Making Decisions for Incompetent Patients Do the Rules Really Work? Thomas S. Derr, Ph.D.

2. A. The Basis: patient autonomy in patient-centered medicine

3. B. When is a surrogate needed? 1. Completely non-autonomous patients 2. Patients debilitated but conscious: --- the problem of voluntary choice --- competence as a variable standard, and results-driven

4. 3. Minors a. Surrogates for minors, but exceptions for certain conditions b. �Emancipated� minors c. �Mature� minors. The effect of the seriousness of the condition. (Cf. Alderson, Sutcliffe, & Curtis, �Children�s Competence to Consent to Medical Treatment�)

5. 4. Incompetence as� --- the biggest problem in medical ethics today (Buchanan and Brock) --- an either-or decision --- a vague standard Competence as roughly the capacity to make decisions about medical treatment , thus to understand the consequences of the choice for one�s own life, and to communicate those decisions in a way that shows reasoning.

6. Who is the Surrogate? 1. Designated proxy. Sole or just primary?

7. 2. Family member? Order of priority a. The missing relative b. The �wrong� relative c. Conflicts among relatives d. Financial interests e. Incompetent or wrong-headed surrogates f. Family assessment of patient desires

8. 3. Health care providers? -- �Health care professionals sometimes should seek to disqualify potential decision makers because of their incompetence, ignorance, bad faith, or conflict of interest.� (Beauchamp & Childress) -- Emergency exceptions to locating legal surrogate -- Who is the real surrogate?

9. 4. Ethics committee? �There is now substantial agreement that the proper role of an institutional ethics committee is not to make treatment or care decisions, but rather to facilitate sound decision making by families and legal guardians, and, when this fails, to refer cases to court or to protective agencies.� (Buchanan & Brock)

10. 5. DSS? Reluctantly 6. Courts? The guardian ad litem.

11. D. Standards 1. Substituted judgment. �Don the mental mantle of the incompetent.� (Saikewicz court) �The question is not what a reasonable or average person would have chosen to do under the circumstances but what the particular patient would have done if able to choose for himself.� (Conroy court)

12. a. How do we know what the patient would want? -- Sufficiency of evidence -- Surrogate bias -- Patient change of mind -- Changed medical possibilities -- Control of our future

13. b. Never competent patients c. The force of advanced directives. May the patient revoke them? The �Ulysses contract.�

14. 2. The �best interests� standard: what the majority of reasonable people would choose for the good of the incompetent. --A �quality of life� calculus, including absence of any �physical pleasure, emotional enjoyment, or intellectual satisfaction.�

15. a. Can �best interests� ever override prior expressed wishes? b. Can a decision by a designated surrogate be overridden in the name of �best interests�? c. How do we measure �best interests� from the patient�s perspective?

16. d. Who judges best interests? A collective decision? �In the great majority of cases [the family�s] choices will reflect general societal judgments about the value to patients of greatly diminished states of existence.� (Dresser & Robertson)

17. e. Focus is on value of life to the patient. Is there room for the interests of third parties? -- patient concern for effect on family -- May surrogate authorize tissue donation by incompetent for benefit of others? (Cf. Cantor, Making Medical Decisions for the Profoundly Mentally Disabled) (Also Strunk v. Strunk 1969) -- Forced sterilization and third-party interests -- Family financial burden

18. e. (cont.) -- Involuntary hospitalization for �danger to others.� -- Resources and claims for unlimited medical treatment -- Fairness, justice, and the burdens of care. �A best interests decision-making standard cannot be applied in a manner that entirely excludes third-party interests.� (Cantor)

19. E. Two Final Remarks 1. The difficulty of distinguishing �best interest� from �substituted judgment.� �The decision to withhold treatment from Saikewicz was based on a regard for his actual interests and preferences.� (the court)

20. 1. (cont.) Hence my complaints: a. �Competence� is a results-driven decision not based on the principle of autonomy. b. �Surrogate� is a misnomer. The real process is collective. c. �Substituted judgment� is really the �best interests� principle in disguise. It is not a workable separate standard.

21. 2. Advanced directives should be coupled with appointment of a proxy, one who knows you well and whom you know well. �In the end, the best laid plans always require devoted and prudent caregivers, who know what it means to benefit the lives of those in their care, and who possess the character to care well, even in the darkest times.� (President�s Council on Bioethics, Taking Care.)