Carter's year in hospice sheds light on end-of-life care option

Context: The Carter family said the 99-year-old former president continues to be at home with family following the one-year anniversary of his decision to stop life-prolonging care.

• "The family is pleased that his decision last year to enter hospice care has sparked so many family discussions across the country on an important subject," the Carter family said.
• There are still misperceptions about hospice care, which could prevent patients from getting the most out of it.

Patients can enter hospice care if their doctor believes they have six months or less to live. Curative treatments are stopped and the focus instead turns to patients' comfort and quality of life.

• Carter is an outlier, but long stays aren't uncommon. Among Medicare patients who died in hospice, the average stay was 92 days in 2021, according to the Medicare Payment Advisory Commission. Half of patients spent 17 days or less in hospice care that year.
• How long a patient stays in hospice can differ significantly based on diagnosis. People with neurological conditions, such as dementia and Parkinson's disease, spent an average of 155 days in hospice in 2021, while the average cancer patient — the original focus of Medicare's hospice benefit — stayed 51 days.
• Medicare doesn't limit how long it will pay for hospice care, and it can be difficult to predict the course of some diseases.

Where it stands: Hospice providers and the National Institute on Aging say patients sometimes don't enter hospice early enough to take full advantage of it.

• "There's so much support [in hospice], not only for the patient but for the circle of people around them. In order to take full advantage of that, we need more time," said Jessica Empeño, a medical social worker and national director of clinical engagement at the advocacy group Compassion and Choices.

Yes, but: Government reports in recent years have shed light on fraud and abuse in the industry. Many past instances of hospice fraud have involved companies billing Medicare for patients who weren't terminally ill.

• A pattern of patients with lengthy stays at the same hospice is now seen as a red flag by regulators, said Howard Young, a partner at law firm Morgan Lewis who represents hospice clients.

Zoom in: Longer hospice stays are more profitable, and for-profit hospices had an average length of stay of 110 days in 2021, compared with a 71-day average at nonprofits, MedPAC data shows.

• MedPAC found that 60% of hospice spending in 2021 came from patients staying over about six months. But an industry-commissioned study conducted by the University of Chicago last year found that longer hospice stays are associated with lower Medicare spending.
• There are some checks on long-stay hospice payments. Since 2016, Medicare has paid less for routine home care in hospice after the first 60 days of care. Medicare also limits its annual payments to hospices.

What they're saying: "This is the only part of medicine where we say that the patient lives too long and that's a problem," said Logan Hoover, vice president of policy and government relations for the National Hospice and Palliative Care Organization.

• High percentages of live discharges could be a better indicator for regulators to determine if hospices are enrolling ineligible patients, Hoover said.

What's next: Hospice industry groups want policymakers to update the Medicare hospice benefit, which was developed in the 1980s.

• Advocates are interested in looking at ways to provide curative care within hospice and revisiting eligibility criteria, and hope to create policy proposals in the next year, said Tom Koutsoumpas, CEO of the National Partnership for Healthcare and Hospice Innovation, a trade group for nonprofit hospices.