How To Take Charge Of Your End-Of-Life Care—And Why You Should Care About It Right Now

To get started, it’s a good idea for every adult over 18 to create an advance directive—a set of legal documents that typically has two components: a health care power of attorney, in which you appoint someone called a health care proxy to make decisions for you if you’re unable to, and a living will, in which you lay out your end-of-life treatment preferences.

You might specify, for example, that you consent to antibiotics and pain medications but not CPR, which can cause internal injuries. You can also state that you prefer to die at home. In fact, according to the New England Journal of Medicine, people with advance directives are more likely to avoid dying in a hospital.

Assembling the documents is easy. You fill out paperwork available online through your state’s Department of Aging, and these documents become legally valid after you sign them in front of witnesses. The number of witnesses required varies by state, but you don’t need a lawyer, according to the National Hospice and Palliative Care Organization. After signing the paperwork, give copies to your health care proxy and your doctor. You can change your plan at any time.

Despite the ease of creating the documents, most Americans haven’t done it. In the most thorough study on the topic to date, University of Pennsylvania researchers examined data on more than 795,000 people from 150 studies and found that advance directives were only slightly more prevalent among people with chronic illnesses (38.2%) than healthy adults (32.7%).

“We need to address common barriers to filling out these important documents, particularly among chronically ill patients,” says study co-author Katherine Courtright, MD, an instructor of medicine at Penn. These obstacles include a reluctance to talk to family members about end-of-life preferences—one Yale study found that 40% of people ages 55 and older said they hadn’t broached the topic with relatives—and concerns about the potential time and expense involved.

“Dying in America today can be a protracted, painful, and traumatic experience,” says Sara Moorman, PhD, an associate professor of sociology at Boston College. “And that’s unfortunate, because we possess the know-how to make most deaths comfortable and even meaningful.”

Here are two resources to get you started:

The Conversation Project
Studies have shown that many people don’t talk to family members about what medical interventions they would or wouldn’t want at the end of life. The Conversation Project, however, can help you do just that. The site provides starter kits for family discussions and for appointing a health care proxy.

Prepare for Your Care
Prepareforyourcare.org provides advance directive forms and takes you through filling them out and sharing them with family and medical providers.

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