1. Medical Ethics and Choice of Treatment or Determining 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 Black = lacking capacity White = has 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? Choosing what to eat for lunch? Determining what type of motor oil to use for your car? Determining what type of motor oil to use for your car? Investing in the stock market? Investing in the stock market? Deciding to undergo liposuction Deciding to undergo liposuction Choosing the best antibiotic for an infection? Choosing the best antibiotic for an infection? Where to live, while dying? Where to live, while dying?

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

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

6. Definitions Decision making capacity: determined by clinicians Decision making capacity: determined by clinicians Competence for decision making: determined by the court Competence for decision making: determined by the court Core meaning of competence: The ability to perform a task. Beauchamp 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. 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 Classic teaching: decision making capacity is determined relative to particular decisions Patients may have capacity for some decisions and not others 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 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 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? Not always practical – how many decisions are made in a day? Capacity may fluctuate over time Capacity may fluctuate over time

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

11. Potential ability to deal with a decision Ability to hold information Ability to hold information Attention, memory Attention, memory Ability to consider new information Ability to consider new information Ability for reasonable reasoning Ability for reasonable reasoning IQ IQ Free from internal coercive forces 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 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 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 Potential benefit-burden Low risk/high gain: a low threshold for determining capacity Low risk/high gain: a low threshold for determining capacity Probability of benefit or burden Probability of benefit or burden Environmental and coercive forces Environmental and coercive forces

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

15. Beauchamps range of incompetence Inability to express or communicate a choice Inability to express or communicate a choice Inability to understand ones situation and its consequences Inability to understand ones situation and its consequences Inability to understand relevant information Inability to understand relevant information Inability to reason Inability to reason Inability to give a rational (italics mine) reason Inability to give a rational (italics mine) reason

16. Beauchamps range of incompetence – cont. Inability to give risk/benefit related reasons Inability to give risk/benefit related reasons Inability to reach a reasonable decision 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 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 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 Medical decisions more complex with bigger stakes, medically and economically A cultural shift in favor of autonomy over medical paternalism A cultural shift in favor of autonomy over medical paternalism A more litigious health care environment and society 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 Not psychologically or anthropologically based, but based on abstract ethical principles and law Prioritization on rationality (reason over values) Prioritization on rationality (reason over values) Probability assessment Probability assessment Individual (rather than collective) decision making 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 Clinicians: often lack training, have strong biases, not always rationally based Courts: what is their training? Courts: what is their training? Court-appointment guardians – may be influenced (coerced) by political forces having nothing to do with the patients best interests Court-appointment guardians – may be influenced (coerced) by political forces having nothing to do with the patients best interests

21. What to do? Approach topic with humility – acknowledge that we may not be terribly wise about this 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: Balance hyper-rational, legalistic approach with notions of kindness, flexibility and an appreciation for more human attributes of decision making involving: Values and stories Values and stories Culture Culture Mutual respect Mutual respect Negotiation Negotiation A sense of humor A sense of humor

23. Were all mad here. Im mad. Youre mad Cheshire Cat in Alice in Wonderland