Blog | Thursday, April 19, 2012

'What about the incapacitated surrogate?'

What should physicians do when surrogate decision makers lack the willingness or capacity to make choices for a patient's end-of-life care? State laws may vary, noted some presenters, but the costs of disputes are consistently expensive.

The issue arose as part of a larger seminar on Ethical Challenges in Advance Care Planning, sponsored by the ACP Ethics, Professionalism and Human Rights Committee that was conducted at Internal Medicine 2012.

Joseph J. Fins, MD, FACP, the chief of Medical Ethics of Weill Cornell Medical College and Director of Medical Ethics at Weill Cornell Medical Center, guided the audience through some considerations and some ways to avoid protracted disputes, namely, preparation and negotiation.

Dr. Fins recalled a case at his facility involving a Korean War veteran with no family. The patient designated another veteran as his designated agent. Dr. Fins thought to call the person to ensure lines of communication, and found out the surrogate didn't want the responsibility. More research unearthed a family member to make medical decisions.

"We talk about patient self-determination, but we never really think about the burden that's imposed on the agent who has to make the choice," Dr. Fins said. "And without adequate preparation, this is a very hard thing to do. ... There's a real importance on preparing ahead of time so the agent knows what kinds of choices they have and what kinds of choices you might want them to make."

An audience member related the case of a surrogate who herself showed signs of dementia.

"That is a no man's land," Dr. Fins said. Physicians can assess capacity on a patient in the hospital, but, he noted, "The health care agent is not a patient."

At Cornell, physicians do a "psychiatric fly-by" on the surrogates. A psychiatrist on the ethics committee meets the agent to ensure capacity. They also try to help the surrogate by providing as much structure as possible and provide resources.

"There is no formal mechanism in the local law to remove an agent," Dr. Fins said.

A famous example is that of Helga Wanglie of Minnesota, a futility case in which a woman entered a persistent vegetative state. The family fought efforts to remove her from a respirator and wanted to continue care, against the wishes of the health care system. The courts eventually ruled in favor of the family.

"It's an underrecognized challenge to surrogate decision-making: What about the incapacitated surrogate? It's hard for us to strip them of the authority," Dr. Fins noted.

While physicians could take action in a dire situation, "It takes time and money, which we're all short of."

A better alternative is to use skillful negotiation to move decision making capability to children or another surrogate, Dr. Fins said.