Who Decides in Health Care? Ethics Champions April 9, 2008 Carol Bayley, PhD CHW VP Ethics and Justice Education

Overview How self-determination replaced “do no harm” as the first principle in medical ethics Elements of informed consent Threshold is capacity Disclosure, understanding, authorization Alternatives Substituted judgment Best Interest When informed consent is necessary; the emergency exception

The Case of Jeanne P. 75 Year old white urban widow; 3 adult children Stage 4 lung cancer (lung removed; chemo) Stable for five years Chemo “stopped working”; tumors grew Tumors produce clotting factor. “Blood thinners” produce stroke.

Galloping (and incomplete) History of Medical Ethics 2000 years : do no harm World War II; Nazi experiments Nuremburg trials, Nuremburg code “Do No Harm” does not work Tuskegee, Willowbrook, series of cases in development of legal doctrine of informed consent The Belmont Report

Respect for Persons Beneficence (flip side: non-maleficence) Justice

Respect for Persons Respect autonomy The patient (or research subject) accepts or refuses treatment (or participation in research) Vulnerable patients (or subjects) are owed special protection

The (capacitated) patient accepts or refuses treatment. What is capacity? What is informed consent?

Informed Consent Information (clinician->patient) Consent (patient->clinician)

Information Disclosure Understanding Alternatives

Consent Voluntary Uncoerced Authorization

What is the next best thing? Substituted judgment Best interest

When is informed consent NOT necessary? Almost never! The emergency exception Informed consent is necessary even when: Patient is unreasonable, angry, tired, scared, sick Patient seems to be making the “wrong” choice Doctor really knows best It’s really inconvenient

Back to Jeanne P. Children know her well, she trusts them. Jeanne understands she will die at some point but doesn’t want to talk about it. What is the goal of informed consent?