Are Not-for-Profit Hospice Providers Better for the Family Caregiver Experience?

Family caregivers looking for a good hospice experience might want to consider a not-for-profit hospice provider over a for-profit provider, with new data from the RAND Corporation showing that not-for-profits get better ratings from family caregivers.

Specifically, the researchers found that a third of for-profit hospice providers score three or more points below the national average in patient experience measures, they wrote in JAMA Internal Medicine.

“Our results are not explained by the geographic regions the hospices operate in, or by the types of patients they care for,” Rebecca Anhang Price, the study's lead author and a senior policy researcher at RAND, said in a public statement. “These findings are particularly pressing given the striking growth of for-profit hospices, which have profit incentives that have been shown to affect how they care for patients.”

Hospice care has grown in prominence as healthcare providers, patients, and their family caregivers have begun to prioritize quality-of-life over survival. In 2000, fewer than a fourth of Medicare beneficiaries received hospice care, compared to around half of beneficiaries in 2020, the researchers said.

Despite its beginnings as community-based volunteer services, the rise in hospice utilization has led to the growth of formalized hospice providers. That growth is mostly explained by the prevalence of for-profit hospice providers, the researchers said, with the number of for-profit hospice providers soaring from 30 percent of all hospice providers in 2000 to 73 percent of all providers in 2020.

The insurgence of for-profit hospice care has long been troubling, the team added. For-profit hospice providers usually deliver care in nursing homes as opposed to the patient’s home, which can detract from quality of life. Additionally, for-profit hospice providers offer fewer nursing services and use less skilled staff, which can impact clinical quality.

In an assessment of more than 3,100 hospice providers nationwide, the researchers found that for-profit models can also have a negative impact on the family caregiver experience, one element that is particularly crucial to hospice care. Family experience is linked to hospice care because of the emotional toll family members may face when watching a loved one deteriorate in palliative care.

The researchers looked at Consumer Assessment of Healthcare Systems and Providers (CAHPS) Hospice surveys for over 650,000 family caregivers with loved ones receiving care at one of the 3,100 hospice facilities. Of those facilities, 906 were not-for-profit and 1,761 were for-profit, the team said.

For-profit hospice providers performed worse than not-for-profits across nearly every measure, a finding that remained even after adjusting for hospice characteristics. Nearly a third of not-for-profit hospice providers scored three or more points above the national average for most CAHPS Hospice domains; that compared to just 21 percent of for-profits that performed the same.

Meanwhile, far fewer not-for-profit hospice providers had poor performance; only 12.5 percent scored three or more points below the national average compared to 31.1 percent of for-profits that did the same.

That variation does offer some glimmer of hope, Anhang Price remarked. While for-profit hospice care does typically offer poorer patient and family caregiver experience, there are some that can provide good care. Patients just need the tools to find those providers, Anhang Price said.

“Not all for-profit hospices provide poor quality,” Anhang Price emphasized. “When choosing a hospice, families and health care professionals can look at the quality metrics available for hospices in their area on Medicare's Care Compare website.”