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Early End-of-Life Planning Improves Quality of Life

Careful documentation of a hospice patient’s end-of-life wishes—and prominently noting that information in health records early—could prevent unwanted hospitalizations and medical interventions, a new study suggests.

Researchers at The Ohio State University analyzed the health records of 1,185 cancer patients who had been referred to hospice and found that a verified do-not-resuscitate order, or DNR, before the last 30 days of life reduced the odds of hospitalization. A prominent note in the electronic health record (EHR) indicating advance care planning (eg, discussions with providers on legal directives, a living will, or a health care power of attorney) also reduced the chances of admission—especially if that note was made at least six months prior to death.

Once a terminally ill patient transitions into hospice care, the goal is to avoid hospitalizations and procedures that are unnecessary and unwanted, says Laura Prater, PhD, MPH, MHA, the study’s lead author and a postdoctoral researcher in the division of general internal medicine at Ohio State’s College of Medicine.

The aim is twofold: to respect the wishes of the patient and to focus on quality of life and pain management. On top of that, keeping hospice patients out of the hospital reduces medical costs.

“Our research supports the importance of sharing your wishes with your physician and your family, and suggests that doing that earlier can prevent unwanted procedures and hospitalizations that don’t align with your priorities and deteriorate your quality of life,” Prater says.

The study was recently published in the American Journal of Hospice & Palliative Medicine.

It’s important for physicians and others on a patient’s care team to have conversations that address that person’s values and goals, including what to do if his or her illness is no longer treatable, says Seuli Bose-Brill, MD, the study’s senior author and an Ohio State Wexner Medical Center primary care physician who specializes in internal medicine and pediatrics.

“These study results really support the idea that earlier is better for documenting these wishes. Those who had advance care planning notes in their health records six months or more before a hospital trip were significantly less likely to be admitted,” Prater says.

Specifically, the researchers looked at the “problem list” on the medical record—an easy-to-spot synopsis of that person’s health status. When advance care planning was noted there more than six months before the final month of life, hospitalization was least likely.

Previous studies have found that only 13% to 44% of terminally ill patients have documentation of advance care planning in their EHRs and that the location and ease of finding that documentation is inconsistent.

In times of crisis, hospice patients often are not in a position to advocate their own priorities and family members can be unsure, afraid, or in disagreement about those wishes, complicating matters. When the medical team can easily see in the EHR that the patient has documented his or her wishes, it eases their ability to act in the patient’s best interest, Bose-Brill says.

“I think everyone in medicine is aware that we need to do a better job documenting end-of-life wishes, but as a nation we haven’t figured out how best to do that,” she says.

Prater says this study could prompt discussions within medical practices and hospitals about how to consistently discuss and document advance care planning for patients.

“It’s important to make this part of the process, to look for ways to make sure that these conversations are happening consistently, early, and often, even though they are complex and difficult conversations to have,” Prater says.

And the topic shouldn’t only come up when transitioning to hospice, Bose-Brill says, because that is a time that can be particularly fraught with emotion and grief and not always the best opportunity to broach the subject.

“The earlier we start this process, the more it normalizes it,” she says.

“There are so many opportunities to explore these issues that patients and families are grappling with and we in health care need to not absolve ourselves of our responsibility to talk about these things.”