Medical Ethics and Choice of Treatment or Determining decision making capacity – drawing clear lines in a murky sea of g

1. Medical Ethics and Choice of TreatmentorDetermining decision making capacity – drawing clear lines in a murky sea of gray… James Hallenbeck, MD Director, Palliative Care Services VA Palo Alto HCS

2. Draw a line, separating black from white • Black = lacking capacity • White = has capacity How do you determine decision making capacity?

3. Do you have decision making capacity relative to the following: • Choosing what to eat for lunch? • Determining what type of motor oil to use for your car? • Investing in the stock market? • Deciding to undergo liposuction • Choosing the best antibiotic for an infection? • Where to live, while dying?

4. Goals of presentation • To raise more questions than I answer • Highlight traditional ways of thinking about decision making and capacity in medical ethics • Present a brief critique of this approach • Some suggestions for better ways to procede

5. What “factors” go into making a decision? • Personal preferences • Not entirely rational, related to values and esthetics • Knowledge/understanding • Risk assessment – probability of benefit/burden • Less obvious: potential involvement of and impact on other people

6. Definitions “Core meaning” of competence: “The ability to perform a task.” Beauchamp • Decision making capacity: determined by clinicians • Competence for decision making: determined by the court Are capacity and competence different in terms of ethics or effect, or merely different in terms of who decides?

7. Decision making capacity • “In medical contexts, for example, a person is usually considered competent if able to understand a therapeutic or research procedure, to deliberate regarding its major risks and benefits, and to make a decision in light of this deliberation.” Beachamp & Childress

8. Linkage of capacity to the decision • Classic teaching: decision making capacity is determined relative to particular decisions • Patients may have capacity for some decisions and not others • Example: a patient with dementia may be able to chose to take a pain pill, but not whether to have a particular surgery

9. Problems with linking capacity to individual decisions: • Competence vs. capacity: as competence is a time-consuming procedure – more a determination regarding the patient than the decision – medical decisions tend to be “bundled” in competency determinations • Not always practical – how many decisions are made in a day? • Capacity may fluctuate over time

10. Patient characteristics of capacity • Fixed vs. fluctuating mental functioning • Capacity of the individual to deal with a decision • Potential ability vs. actual ability

11. Potential ability to deal with a decision • Ability to “hold” information • Attention, memory • Ability to consider new information • Ability for “reasonable” reasoning • IQ • Free from internal coercive forces

12. Actual ability to make a decision • Presumes potential abilities, but goes on to evaluate whether the person actually as the necessary information and understanding to make a choice • Example: While I presumably have the necessary potential to be a stock investor, some would say I lack the ability to invest

13. Characteristics of the choice • Potential benefit-burden • Low risk/high gain: a low threshold for determining capacity • Probability of benefit or burden • Environmental and coercive forces

14. Problem of testing • Desire for an “empiric” test to provide necessary information – avoiding personal bias • Problems • Temporal fluctuation • To the extent capacity is linked to specific decisions, ? Applicability of chosen test to that decision

15. Beauchamp’s range of incompetence • Inability to express or communicate a choice • Inability to understand one’s situation and its consequences • Inability to understand relevant information • Inability to reason • Inability to give a rational (italics mine) reason

16. Beauchamp’s range of incompetence – cont. • Inability to give risk/benefit related reasons • Inability to reach a reasonable decision Tests can be applied to address these specific factors involved in decision making

17. Historical perspective • Current way of thinking of medical decision making capacity very recent – last 30-40 years • The problem of having to make decisions related to the care of sick individuals of questionable capacity is not new What changed?

18. Changes influencing thinking about medical decisions • Medical decisions more complex with bigger stakes, medically and economically • A cultural shift in favor of autonomy over medical paternalism • A more litigious health care environment and society

19. What is wrong with this approach? • Not psychologically or anthropologically based, but based on abstract ethical principles and law • Prioritization on rationality (reason over values) • Probability assessment • Individual (rather than collective) decision making Example hormone replacement study

20. Presumption of “competence” on the part of assigned judges • Clinicians: often lack training, have strong biases, not always rationally based • Courts: what is their training? • Court-appointment guardians – may be influenced (coerced) by political forces having nothing to do with the patient’s best interests

21. What to do? • Approach topic with humility – acknowledge that we may not be terribly wise about this

22. What to do? • Balance hyper-rational, legalistic approach with notions of kindness, flexibility and an appreciation for more human attributes of decision making involving: • Values and stories • Culture • Mutual respect • Negotiation • A sense of humor

23. We’re all mad here. I’m mad. You’re mad Cheshire Cat in Alice in Wonderland