WASHINGTON, D.C.—End-of-life care is both a personal and professional concern for providers and other stakeholders, said Kathleen Sebelius, former secretary of the Department of Health and Human Services.
It’s also a policy issue of particular interest to Sebelius—the co-chair of the Aspen Institute Health Strategy Group along with another former HHS head, Tommy Thompson—she noted during a panel discussion last week.
“As you remember, I am the death panel lady,” she joked.
Sebelius said she has personally seen end-of-life care at both its best and worst, as have many of the strategy group’s other members. And that was much of what drove their year-long discussions on how to improve end-of-life care, the results of which were published recently.
Clinicians must have frank conversations with patients; for instance, they must encourage patients to outline and regularly update an advance directive to ensure that they receive the care they want when they become seriously ill, the strategy group concluded in its report (PDF). Many physicians may feel uncomfortable talking about death with patients, but these conversations are important to ensure that patients don’t suffer unnecessarily at the end of life.
Sebelius said that Toby Cosgrove, M.D., CEO of the Cleveland Clinic and one of the group’s members, took discussions about the importance of advance directives back to the health system, and found that many clinicians did not have one in place, either. So now, it’s being added as a routine part of human resources paperwork for staff at the system—when they fill out insurance forms, they’re also asked about advance directives.
Sebelius said Cosgrove realized that clinicians would have trouble pushing patients to consider advance care planning when they don’t have plans in place themselves.
Also joining Sebelius at the panel was Victor Dzau, M.D., president of the National Academy of Medicine, another member of the 23-person strategy group. In addition to encouraging providers to talk more openly with patients about planning for end-of-life, Dzau said the group also stressed the importance of medical education and training that includes more palliative and end-of-life care in the curricula.
Though there isn’t a “gold standard” yet in medical education on this issue, it’s moving in that direction, he said. More training, both in medical school and after a physician begins to practice, can make difficult conversations about death easier.
“You need both specialists and generalists to be able to talk comfortably,” Dzau said.
This will be especially important as the population continues to age. Sebelius said 11,000 people become eligible for Medicare every day, swelling the numbers of people who should seriously consider advance care planning for end-of-life.
The group suggested three other changes in its report:
- Make adjustments to Medicare to cover more palliative care options. Most Medicare patients would be covered for end-of-life care through the hospice benefit, but that doesn’t extend to other long-term services that may be needed, like assistance with bathing or dressing.
This is the only solution of the five that would require legislative action, but Sebelius said that patients may avoid palliative or end-of-life services because they’re not covered, or they may be hit with high, out-of-pocket bills because they didn’t realize certain services were not covered by Medicare.
Many patients would prefer to have an option to die at home, but Medicare benefits are geared more toward covering hospitalized end-of-life care, she said. “That becomes a real Catch 22 for families who can’t pay out of pocket,” she said.
- Create quality metrics for end-of-life care. Providers should have access to standard measures that identify not just a patient's preferences for end-of-life care, but also the family and caregiver’s experiences and how well they were supported by social services. These metrics could be incorporated into widely used reporting systems, like Hospital Compare and Nursing Home Compare, according to the report.
- Support communities that change their approach to end-of-life care. This includes financial support, according to the report. Lessons, both from success and failures, must be shared with other organizations that may be attempting the same type of transformation. Sebelius said these type of changes can't start with government officials, but must start in local communities.
Watch the complete event below: