A terminally ill hospice resident sits with a music therapist in her bed in Lakewood, Colorado.
By JOANNE KENEN
A LITANY OF WRONGS — A number of years ago, when I had a fellowship to write about end of life care across the United States, a geriatrician in California told me, “There are no do-overs in death.”
A group of prominent physicians who specialize in end of life care think it may be a do-over time for hospice. Or at the very least a gut-check. Once a movement, hospice is now an industry dominated by publicly-traded companies and private equity firms, and it’s been the subject of critical government reports and withering exposes, including a New Yorker-ProPublica investigation of the “for profit hustle.” Today, with half of all Americans dying in hospice care, some doctors believe its challenges are in urgent need of fixing.
In a six-page “call to action” recently published in the Journal of Palliative Medicine, 325 prominent doctors in this field wrote that “in recent years, we have observed an increasing prevalence of serious deficiencies in hospice care and high variability in quality of care.”
Instances of “poor care,” they said, are “increasingly common.” The signatories (some of whom are retired) include pioneers in the field, including two-thirds of the living former presidents of the American Academy of Hospice and Palliative Medicine, the professional society for these physicians.
Ira Byock, a long-time hospice and palliative medicine physician who was the lead author, told Nightly that the Academy and the main hospice trade group should do more to set quality standards and promote transparency. That would help government regulators focus on what matters to patients and families, rather than generating a lot more administrative hassles.
The essay in the journal cited a litany of wrongs — not enough physician involvement in patient care, unmanageably large nurse caseloads and inadequate, interdisciplinary care teams. The nurses, doctors, social workers, chaplains and others who are the core of hospice care, which generally takes place in patients’ homes, are overworked or not properly trained. They also said some hospices don’t have the required backups for emergencies, such as intense pain or difficulty breathing that families can’t take care of themselves. That means families dial 911, and patients end up back in the very hospitals that they chose hospice to avoid.
Some issues the essay cites reflect challenges in U.S. health care across the board — like nursing shortages after the pandemic. Others reflect the changing nature of hospice ownership and the Medicare payment system. The authors want the statement to be a roadmap as physicians negotiate with employers so they can provide consistently good care.
Ben Marcantonio, interim CEO of the National Hospice and Palliative Care Organization, the trade group, told Nightly that a small number of hospices that have committed “actually fraudulent behavior” have tarnished how hospice overall is perceived. The industry, he said, has also called for federal resources to educate health providers in the field, which will help with both workforce shortages and quality. And they’re working with the Center for Medicare Services on quality measures “that really do put the focus in the right place.” They also want Medicare to pay hospices more.
Dr. Holly Yang, president of the American Academy of Hospice and Palliative Care and a practicing palliative care physician in San Diego, said she doesn’t think hospice’s challenges revolve so much around nonprofit vs for-profit ownership, but about the Medicare hospice benefit itself. A lot has changed since Congress added hospice to Medicare in 1982 — how we age and die, and where and how families live and work and who is available to stay home and care for a dying relative.
The hospice benefit “has not changed with the times,” said Yang, who also trains upcoming hospice and palliative care doctors. Hospice in its early days was very focused on cancer, which had a more predictable and shorter course than it does with today’s treatments. And more people in hospice have conditions like dementia or congestive heart failure, where the trajectory is uncertain. People can live with serious illness for a long time but need support.
For Byock and his colleagues, calls for legislative change aren’t enough, particularly as advocates have been calling for remedies for several years and Congress isn’t racing to comply. Hospice, they say, needs to do more to protect quality, to protect “vulnerable seriously ill people with their families” on its own. There may be no do-overs in death. But maybe it’s time for a do-over of hospice.
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