Today is the start of March. But it would not be right to say good-bye to February without mentioning a quite extraordinary happening (and I’m not talking about Leap Year). I’m referring to President Jimmy Carter’s one-year anniversary on hospice, which happened on Sunday, Feb. 18.

Much has been written about Carter’s teaching, through his actions, about the hospice benefit. It bears discussing.  

To start, a year ago, in electing to be on hospice at all, he became the first known president to do so, according to the National Hospice and Palliative Care Organization. With his decision to go on hospice — a program he helped create as president — he joined with 1.7 million Medicare beneficiaries, or 49% of Medicare decedents, on the benefit, per the January 2024 report of the Medicare Payment Advisory Commission, which advises Congress on Medicare payment issues.

At six months, Carter taught us — and particularly regulators  — another valuable lesson: what a long length of stay looks like. While this definition is not outlined anywhere, the average length of stay in 2021 was 92 days, NHPCO reported.

Through living in hospice for so long, Carter has provided advocates needed proof that a long length of stay need not be a dirty word. For regulators, long length of stay implies overpayment. It accounts for the majority of Medicare spending on hospice, MedPAC reported in 2023. In 2021, Medicare spent $13.6 billion, nearly 60% of hospice spending that year, on patients with stays exceeding 180 days.

More frightening, there is a built-in financial incentive for providers not to keep long-stay patients. Long lengths of stay tend to make hospice providers exceed what is known as the aggregate cap, which limits annual aggregate payments to providers.

For five years, the commission has recommended a 20% reduction in the cap. In January, interestingly enough, MedPAC did not recommend cuts to the aggregate payment cap. Might Carter’s experience have had something to do with this?

 “MedPAC’s shift away from its previous recommendations to cut the aggregate payment cap is a win for hospices, patients, and families,” NHPCO COO and interim CEO Ben Marcantonio said at the time. “For nearly five years, NHPCO and our members have publicly and privately made it clear that cutting the hospice aggregate cap would likely reduce access to hospice care by forcing some providers to close and incentivizing hospices to discharge patients after 180 days of care. We are gratified that Congress never acted on the cap cut concept. Further, we appreciate that MedPAC has heard our concerns, and that its next report to Congress will not include the recommendation.”

Now Carter has hit another milestone: one year in hospice care. Just months before, he attended the funeral of his wife, Rosalynn Carter, who had only recently entered hospice care. In defying yet again what it means to be on an actuary’s death time table, Carter is challenging those who make the rigid, arguably arbitrary, hospice rules that may unintentionally bind many decent hospices. In doing so, he is imparting something else: He is forcing all of us to rethink what it means to die on your own terms.

Liza Berger is editor of McKnight’s Home Care. Email her at [email protected].