Assessing Preferences for Patients who Lack Decision Making Capacity (Andereck & Fulbright 1/15/25)

 A recording of this presentation is available HERE.

Deep gratitude to Dr. William Andereck and Robert Fulbright for a thought-provoking presentation this week on Decision-making Capacity. This is an issue that we encounter with surprising frequency on the inpatient medicine service, and the distress that decision-making capacity causes on patients and providers is intense. 

This is definitely a presentation that is better watched than summarized, but I did take a few notes. 

The concept of Patient Consent first arose in 1914, Benjamin Cardoza, "Every human being with a sound mind has a right to determine what he does with his own body."

This concept, of course, was brought to light in the context of the Tuskegee Study (which ran 1932-1972) and the subsequent Belmont Report (published in 1979). It was the Belmont Report (which I don't think I have ever heard of before this lecture) in which Informed Consent became a thing. 

The Belmont Report outlined 3 principles:

1. Beneficence
2. Justice
3. Respect for persons (which was ultimately morphed into Respect for the autonomy of the person)

Non-maleficence (do no harm) was not included.

Of note, Dr. Andereck stressed, autonomy at the time was not meant to be interpreted as "the right to demand whatever you want". Rather, it was meant as a freedom from interference, the right to say "no". Somewhere along the last 50 years, it has become interpreted as a "positive right". From Dr. Andereck's perspective, early bioethicists were clear that if a medical intervention does not benefit the people, there is no obligation. 

Competence is defined as 1) having values and goals 2) the ability to communicate those and 3) reasons to do or not do something related to this goals. Competence is NOT the same as Capacity. 

Capacity is specific>> the question should always be capacity for what?

Capacity it temporal>> it can wax and wane

Capacity is the perspective of a 3rd party>> patients never tell us that they are incapacitated. It must be observed from an outside party.

Applied to medicine, then, capacity becomes

1. the ability to