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Here’s help for deciding who should make end-of-life healthcare decisions

Who will speak for you when you can’t speak for yourself?

A healthcare proxy is the person who makes medical decisions on behalf of the patient. (iStockphoto)
A healthcare proxy is the person who makes medical decisions on behalf of the patient. (iStockphoto)
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By Andrea Richards

Have you decided who will make tough choices for you, if you can’t make them for yourself?

According to a 2020 survey from the National Poll on Health Aging, more than half of older adults haven’t made arrangements to assign a healthcare proxy, the person who makes medical decisions on behalf of the patient.

The survey showed that 46 percent of adults ages 50-80 have completed at least one advance care planning document — legal documents such as a living will that outlines preferred medical treatment should they become unable to communicate their wishes. These documents often include the designation of a “durable healthcare power of attorney,” aka a healthcare proxy. This role is an essential part of advanced care planning, but that’s the part many haven’t filled out.

“I want my patients to get the best possible care, and having the right healthcare proxy is part of that care,” notes Dr. Christopher J. Pietras, director of Palliative Care at the UCLA Department of Medicine.

States have different requirements for who the healthcare proxy can be (most require an adult age 18 and older) and also how to best document that choice: A living will is one of many options, but there also are advanced care documents online including Five Wishes and free forms from Stanford Medicine and the State of California’s Department of Justice.

“There’s a number of documents to help guide these discussions so that patients are not having these conversations without materials to help prompt important questions and discussions,” says Dr. Alisha Beth Benner, a palliative medicine specialist at the Duke Cancer Center in Durham, North Carolina. She suggests asking your regular physician for forms and guidance to begin the process.

Getting the right form is step one, but there’s still a difficult decision to make: who is the best person for the job?

“A healthcare proxy should be someone that a patient feels would honor their wishes in the way that they have shared — someone that is able to set aside their own personal wishes for the patient and honor those of the patient,” says Benner. “They do not need to be related to the person — it doesn’t have to be a blood relative. It can be a best friend, a trusted mentor, someone who is willing to take on the role and be present when called upon.”

Discussions with family members about end-of-life care can be emotional already, so letting a partner or loved one know that they may not be right as a healthcare proxy might best be done with mindfulness.

“I would come at it from an empathetic relief kind of standpoint,” says Benner, “that you are not burdening them with that responsibility.”

No matter who the designated person is, it’s important to physicians like Dr. Benner that patients update their choices for care, and perhaps even who they want as a proxy, as their healthcare issues change. Human bodies and health concerns aren’t stagnant, nor should these decisions remain static.

Any time there’s a change in health status, advance directives should be reviewed so that the proxy remains the person best equipped to look after the patient’s medical wishes.