Medical Ethics and Choice of Treatment

orDetermining decision making

capacity – drawing clear lines in a murky sea of gray…

James Hallenbeck, MDJames Hallenbeck, MD

Director, Palliative Care ServicesDirector, Palliative Care Services

VA Palo Alto HCSVA Palo Alto HCS

Draw a line, separating black from white Black = lacking capacityBlack = lacking capacity White = has capacityWhite = has capacity

How do you determine decision making capacity?

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 Determining what type of motor oil to use

for your car?for your car? Investing in the stock market?Investing in the stock market? Deciding to undergo liposuctionDeciding to undergo liposuction Choosing the best antibiotic for an Choosing the best antibiotic for an

infection?infection? Where to live, while dying?Where to live, while dying?

Goals of presentation

To raise more questions than I answerTo raise more questions than I answer Highlight traditional ways of thinking about Highlight traditional ways of thinking about

decision making and capacity in medical decision making and capacity in medical ethicsethics

Present a brief critique of this approachPresent a brief critique of this approach Some suggestions for better ways to Some suggestions for better ways to

procedeprocede

What “factors” go into making a decision? Personal preferencesPersonal preferences

Not entirely rational, related to values Not entirely rational, related to values and estheticsand esthetics

Knowledge/understandingKnowledge/understanding Risk assessment – probability of Risk assessment – probability of

benefit/burdenbenefit/burden Less obvious: potential involvement of and Less obvious: potential involvement of and

impact on other peopleimpact on other people

Definitions

Decision making Decision making capacitycapacity: determined by : determined by cliniciansclinicians

CompetenceCompetence for decision making: for decision making: determined by the courtdetermined 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?

Decision making capacity

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

Beachamp & Childress

Linkage of capacity to the decision Classic teaching: decision making capacity Classic teaching: decision making capacity

is determined relative to particular decisionsis determined relative to particular decisions Patients may have capacity for some Patients may have capacity for some

decisions and not othersdecisions and not othersExample: a patient with dementia may Example: a patient with dementia may

be able to chose to take a pain pill, but be able to chose to take a pain pill, but not whether to have a particular not whether to have a particular surgerysurgery

Problems with linking capacity to individual decisions: Competence vs. capacity: as competence is Competence vs. capacity: as competence is

a time-consuming procedure – more a a time-consuming procedure – more a determination regarding the determination regarding the patientpatient than the than the decision – medical decisions tend to be decision – medical decisions tend to be “bundled” in competency determinations“bundled” in competency determinations

Not always practical – how many decisions Not always practical – how many decisions are made in a day?are made in a day?

Capacity may fluctuate over timeCapacity may fluctuate over time

Patient characteristics of capacity

Fixed vs. fluctuating mental functioningFixed vs. fluctuating mental functioning CapacityCapacity of the individual to deal with a of the individual to deal with a

decisiondecision Potential ability vs. actual abilityPotential ability vs. actual ability

Potential ability to deal with a decision Ability to “hold” information Ability to “hold” information

Attention, memoryAttention, memory Ability to consider new informationAbility to consider new information Ability for “reasonable” reasoningAbility for “reasonable” reasoning

IQIQ Free from internal coercive forcesFree from internal coercive forces

Actual ability to make a decision

Presumes potential abilities, but goes on to Presumes potential abilities, but goes on to evaluate whether the person actually as the evaluate whether the person actually as the necessary information and understanding to necessary information and understanding to make a choicemake a choice Example: While I presumably have the Example: While I presumably have the

necessary potential to be a stock investor, necessary potential to be a stock investor, some would say I lack the ability to some would say I lack the ability to investinvest

Characteristics of the choice

Potential benefit-burden Potential benefit-burden Low risk/high gain: a low threshold for Low risk/high gain: a low threshold for

determining capacitydetermining capacity Probability of benefit or burdenProbability of benefit or burden Environmental and coercive forcesEnvironmental and coercive forces

Problem of testing

Desire for an “empiric” test to provide Desire for an “empiric” test to provide necessary information – avoiding personal necessary information – avoiding personal biasbias

ProblemsProblems Temporal fluctuationTemporal fluctuation To the extent capacity is linked to To the extent capacity is linked to

specific decisions, ? Applicability of specific decisions, ? Applicability of chosen test to that decisionchosen test to that decision

Beauchamp’s range of incompetence Inability to express or communicate a Inability to express or communicate a

choicechoice Inability to understand one’s situation and Inability to understand one’s situation and

its consequencesits consequences Inability to understand relevant informationInability to understand relevant information Inability to reasonInability to reason Inability to give a Inability to give a rationalrational (italics mine) (italics mine)

reasonreason

Beauchamp’s range of incompetence – cont. Inability to give risk/benefit related reasonsInability to give risk/benefit related reasons Inability to reach a reasonable decisionInability to reach a reasonable decision

Tests can be applied to address these specific factors involved in decision making

Historical perspective

Current way of thinking of medical decision Current way of thinking of medical decision making capacity very recent – last 30-40 making capacity very recent – last 30-40 yearsyears

The problem of having to make decisions The problem of having to make decisions related to the care of sick individuals of related to the care of sick individuals of questionable capacity is not newquestionable capacity is not new

What changed?

Changes influencing thinking about medical decisions Medical decisions more complex with Medical decisions more complex with

bigger stakes, medically and economicallybigger stakes, medically and economically A cultural shift in favor of autonomy over A cultural shift in favor of autonomy over

medical paternalismmedical paternalism A more litigious health care environment A more litigious health care environment

and societyand society

What is wrong with this approach? Not psychologically or anthropologically Not psychologically or anthropologically

based, but based on abstract ethical based, but based on abstract ethical principles and lawprinciples and law Prioritization on rationality (reason over Prioritization on rationality (reason over

values)values) Probability assessmentProbability assessment Individual (rather than collective) Individual (rather than collective)

decision makingdecision makingExample hormone replacement study

Presumption of “competence” on the part of assigned judges Clinicians: often lack training, have strong Clinicians: often lack training, have strong

biases, not always rationally basedbiases, not always rationally based Courts: what is their training?Courts: what is their training? Court-appointment guardians – may be Court-appointment guardians – may be

influenced (coerced) by political forces influenced (coerced) by political forces having nothing to do with the patient’s best having nothing to do with the patient’s best interestsinterests

What to do?

Approach topic with humility – Approach topic with humility – acknowledge that we may not be terribly acknowledge that we may not be terribly wise about thiswise about this

What to do?

Balance hyper-rational, legalistic approach with Balance hyper-rational, legalistic approach with notions of kindness, flexibility and an appreciation notions of kindness, flexibility and an appreciation for more human attributes of decision making for more human attributes of decision making involving:involving: Values and storiesValues and stories CultureCulture Mutual respectMutual respect Negotiation Negotiation A sense of humorA sense of humor

We’re all mad here. I’m mad. You’re mad

Cheshire Cat in Alice in Wonderland