10 March 2023

Hospice Care

Jimmy Carter entered hospice care. The 98-year-old former president chose to spend his remaining time at home with family and receive hospice care instead of additional medical intervention.

On virtually the same date of the announcement, the Rand Corporation’s assessment of caregivers’ reports of hospice care experiences was published.

Welcome back. The roots of hospice care can be traced to Malta around 1065, where it was dedicated to caring for the ill and dying en route to and from the Holy Land. Hospices flourished in the Middle Ages but declined as religious orders dispersed. Still, its development continued in France, the U.K. and Australia.

The first modern hospice center was created in the U.K. in 1967 by Dame Cicely Saunders, a British registered nurse, who completed her medical degree in 1957. Saunders emphasized the patient rather than the disease, introducing the notion of total pain, which included psychological and spiritual as well as physical discomfort. 

Saunders presented her approach in tours of the U.S., and in 1967, opened St Christopher's Hospice in London. Florence Wald, dean of Yale School of Nursing, had heard Saunders speak and spent a month working with her before bringing the principles back to the U.S., establishing Hospice, Inc. in 1971.

U.S. Hospice Today
Hospice care is for those expected to live no more than six months, though it can be extended by the individual’s care team--physician, nurses, nurse assistants, social workers, chaplains and volunteers. The goal is not to cure the underlying disease, but to support the highest quality of life possible for whatever time remains.

Hospice elements (from https://hospicewise.org).

Most hospice care is provided at home, with a family member as the primary caregiver; however, hospice care is available at hospitals, nursing homes, assisted-living and hospice facilities, and even prisons.

Hospice has become a significant part of the U.S. health care system. In 1982, Congress initiated the creation of the Medicare Hospice Benefit, which became permanent in 1986. In 1993, President Clinton installed hospice as a guaranteed benefit and an accepted component of health care provisions. About half of Medicare recipients who died in 2020 received hospice services.

Medicare, Medicaid, the Department of Veterans Affairs and private insurance typically pay for hospice care. Each hospice program has its own payment policy, with services often based on need rather than the ability to pay.

The RAND Study
Although hospice in the U.S. began as a community-based, mainly volunteer service, by 2020, 73% of all hospices were for-profit. It’s been found that for-profit hospices provide care differently than not-for-profit hospices. For example, they generally employ fewer and less-skilled staff. The RAND study examined differences in reported quality of care.

The researchers assessed quality of hospice services by evaluating responses from the Consumer Assessment of Healthcare Providers and Systems Hospice Survey, a questionnaire completed by a hospice patient's primary caregiver after the patient has died. In all, they reviewed data from 653,208 respondents, reflecting care from 3107 hospices between April 2017 and March 2019, for a cross-sectional examination of hospice care by profit status.

They calculated scores across eight quality measures--hospice team communication, timely care, help for symptoms, respectful treatment, emotional and spiritual support, getting training to care for the hospice patient at home, overall rating of hospice care, and willingness to recommend the hospice to others--adjusting for case mix, including factors such as patient age and primary diagnosis.

Across all measures, a higher proportion of for-profit hospices were in the low performing category--31% scored 3 or more points below the national average of overall performance, 22% scored 3 or more points above the average; 12% of not-for-profit hospices scored 3 or more points below the average, 34% scored 3 or more points above the average. Those who received care from for-profit chains reported the worst care experiences.

Differences in reported hospice care experiences between for-profit and not-for-profit hospices after adjusting for hospice organizational characteristics (fig 2 from jamanetwork.com/journals/jamainternalmedicine/article-abstract/2801753).

Wrap Up
The researchers emphasize that, while a greater proportion of for-profit hospices performed worse than the national average, some for-profit hospices performed better than the average.

When choosing a hospice, families and health care professionals can look at the metrics available for hospices in their area on Medicare’s Care Compare website.

Thanks for stopping by.

Hospice background
Dame Cicely Saunders:

RAND hospice study in JAMA Internal Medicine: jamanetwork.com/journals/jamainternalmedicine/article-abstract/2801753
Articles on study:


  1. Good background info, thanks Warren.

  2. Valuable and thorough information, thanks Warren.