Only about one-third (37%) of U.S. adults had completed any type of advance directive, found a recent review of studies.1
“Improving the quality of care that Americans receive near the end of their lives is a universally important and very personal matter,” says Katherine R. Courtright, MD, MS, one of the study’s authors and instructor of medicine in the division of pulmonary, allergy, and critical care, the Palliative and Advanced Illness Research (PAIR) Center, and the Fostering Improvement in End-of-Life Decision Science (FIELDS) program, all at University of Pennsylvania’s Perelman School of Medicine.
Researchers analyzed 150 studies published from 2011-2016. They found that similar proportions of patients with chronic illnesses (38%) and healthy adults (33%) had completed advance directives.
There have been many educational, research, and policy efforts to improve the quality of end-of-life care by encouraging the completion of advance directives.
“Yet, we didn’t have a great sense of the impact of these interventions,” says Courtright.
The researchers weren’t terribly surprised that few adults had completed an advanced directive. They did expect the number to be much higher for people with life-limiting and serious illnesses — which was not the case.
“These individuals are the ones ostensibly most likely to benefit from documenting their medical care preferences and/or a trusted surrogate decision-maker in the event they are irreversibly ill and unable to make their own medical decisions,” says Courtright.
Low rates of advance directive completion persist, despite significant efforts to promote use. “This requires us to address the many barriers to completing these documents,” says Scott D. Halpern, MD, PhD, another of the study’s authors. Halpern is director of the PAIR Center and the FIELDS program, and an associate professor of medicine, epidemiology, and medical ethics and health policy at the Perelman School of Medicine.
One of the most notable barriers is the legal requirement to obtain signatures from multiple witnesses, and/or notary in order for advance directives to be considered valid.
“It can be argued that states have an ethical responsibility to change their existing laws that make it harder for seriously ill patients to complete advance directives,” says Halpern. “These laws serve no demonstrated purpose that helps patients or caregivers.”
Providers themselves often are ill-prepared to hold advance care planning discussions.
“Frankly, most people in healthcare are uncomfortable having these conversations. So, how can we expect our patients to have them?” asks Lucia D. Wocial, PhD, RN, a nurse ethicist at Fairbanks Center for Medical Ethics at Indiana University Health in Indianapolis.
It’s unreasonable to put the burden on physicians to hold advance care planning conversations, argues Wocial: “If physicians are trying to have these discussions and the patient has never had a talk with their family, it’s not going to go very well.”
A 15-minute block of time, which is all physicians typically are allotted for patient visits, just isn’t long enough for an in-depth advance care planning discussion.
“The healthcare system doesn’t financially reward preventive care. And, in my mind, identifying people’s preferences is a type of preventive care,” says Wocial.
Providers can try two things in lieu of a lengthy discussion: Suggest to patients that they speak with family about their goals of care, and giving patients resources to help them do it. “Ten years ago, there was nothing — now, there’s a long list of resources,” says Wocial. Providers can say to a patient, for instance, “This is a really important thing and I want to have a discussion with you about it, but it makes more sense for you to have a conversation with your family. And if you’re struggling with it, here are some resources that can help you.”
Hospitals often designate social workers, chaplains, or others as the point person for advance planning discussions. “There are turf battles. But it’s everybody’s opportunity to have these conversations,” says Wocial.
Regardless, advance care planning should be completed before an intractable conflict arises at the end of life, she says.
“If I, as an ethicist, am having this conversation with somebody, something has gone terribly wrong,” says Wocial. “We’ve arrived at an impasse and somebody’s called me in to help sort it all out.”
Most hospitals offer classes on congestive heart failure and diabetes management free of charge to patients. “Why are we not offering classes, which could be led by nurses — not to complete the paperwork, but to help foster the discussion?” asks Wocial.
Upon admission to the hospital, patients typically are asked if they have an advance directive. “If yes, we check the box and put it in our files. If no, we ask them ‘Do you want to talk to anybody?’ I think that’s the wrong approach,” says Wocial.
She suggests instead asking the patient, “Who have you named to speak on your behalf if you can’t speak for yourself? And if you haven’t done that, we encourage you to.”
“The emphasis should be less on the documents, and more on the discussion,” says Wocial.
- Yadav KN, Gabler NB, Cooney E, et al. Approximately one in three U.S. adults completes any type of advance directive for end-of-life care. Health Affairs 2017; 36(7):1244-1251.
- Katherine R. Courtright, MD, MS, Division of Pulmonary, Allergy, and Critical Care/Palliative and Advanced Illness Research Center/the Fostering Improvement in End-of-Life Decision Science Program, Perelman School of Medicine, University of Pennsylvania, Philadelphia. Email: email@example.com.
- Scott D. Halpern, MD, PhD, Palliative and Advanced Illness Research Center, director of the Fostering Improvement in End-of-Life Decision Science Program, Perelman School of Medicine, University of Pennsylvania, Philadelphia. Phone: (215) 898-1462. Email: firstname.lastname@example.org.
- Lucia D. Wocial, PhD, RN, Nurse Ethicist, Fairbanks Center for Medical Ethics, Indiana University Health, Indianapolis. Phone: (317) 962-2161. Email: email@example.com.