Barbara Bush passes away—but not before shining a light on end-of-life care

Topics: Care Delivery, Palliative Care, Patient Populations, Seniors, Providers, Hospitals

By Scott Orwig, contributing editor

In the final days of Barbara Bush's life, as her health was faltering after several hospitalizations, her family made an announcement: The former first lady, the statement said, had decided to stop curative treatment for her health conditions. Instead, she would receive "comfort care" at home, where she was "surrounded by a family she adores."

The Bushes' public statement, coming from one of America's most public families, shone a rare light on what often is an intimate, painful conversation between patients, families, and doctors: When exactly is the right moment to stop trying to "cure" an incurable disease? How can patients be made comfortable in their final hours? What mark do patients hope to leave before they die?

While experts say these are critical conversations between doctors and patients, they remain relatively rare. A recent Kaiser Family Foundation poll, 87% of Americans age 65 and older expressed support for having end-of-life conversations with physicians, but only 27% had actually discussed these issues with their doctor.

But some health systems are creating resources to help close that gap—and to make these difficult conversations a little bit easier.

Honest conversations, better care, and cost-savings

In recent years, Atul Gawande has become one of the leading voices on how the United States talks—or doesn't talk—about death and dying. In his 2014 book, Being Mortal, Gawande posited that the medical profession's job isn't to simply prolong life, but "enable well-being"—that dying patients shouldn't necessarily be concerned with living longer, but having "a good life to the very end."

According to Gawande, the first step to better end-of-life care is teaching providers to become better communicators and instructing them on how to engage with patients.

"The most powerful tool in an end-of-life care tool kit is simply the conversation between the physician and the patient about the patient’s prognosis; about the trade-offs the patient is willing to make and not willing to make; about the patient’s goals and fears," he said in an interview with hfm magazine.

While these conversations are often difficult and uncomfortable for both parties involved, they lead to documented quality-of-life and financial benefits. A 2011 study published in JAMA found that Medicare beneficiaries who use "advance directives" to outline their end-of-life plans cost Medicare $5,600 less on average, have lower instances of dying in a hospital, and higher utilization of hospice care.  

Hospice and palliative care: Growing, but underutilized

The sooner doctors and patients are able to speak openly about the patient's end-of-life priorities, experts say, the earlier patients can begin to realize the benefits of palliative and hospice care—which are widely available, but often underutilized. For instance, Advisory Board data show 95% of its Oncology Roundtable members offer palliative care services, but just 19% of cancer patients at those organizations receive palliative care. American Health Line is published by Advisory Board, a division of Optum, which is a wholly owned subsidiary of UnitedHealth Group.

And contrary to what many patients believe, choosing palliative care doesn't necessarily mean that their disease will necessarily progress more quickly. In one study of patients with metastatic non–small-cell lung cancer, patients receiving palliative care lived for an average of 11.6 months, compared with 8.9 months for those who received their usual care regimen.  

How providers can help patients start end-of-life conversations

Experts suggested that Barbara Bush's unusually public reckoning with her failing health could lead more individuals to seek such conversations with their doctors.

"It's a personal decision that she didn't have to share," Nathan Kottkamp, founder and chair of National Healthcare Decisions Day, told Kaiser Health News, "but hopefully it will encourage others to think about their choices, talk about their choices, document their choices, and have those choices honored."

To encourage such conversations, the University of Pittsburgh Medical Center (UPMC) piloted a program in which social workers meet with patients and caregivers to share a list of questions covering a range of relevant topics, including treatment goals and care expectations.

The social workers then help patients identify their top priorities and coach them on how to raise these issues with the care team. At the end of the meeting, the social worker writes up summary notes and reviews next steps for the patient. In a randomized control trial, UPMC showed that patients who received coaching were twice as likely to ask questions related to end of life during their next physician visit, compared to patients who did not receive the intervention.