To: NHPCO Membership
From: Communications Department
Date: January 6, 2004

JAMA Publishes Study Examining End-of-Life Care in U.S. Highest Levels of Satisfaction Provided by Hospice Care at Home

Alexandria, VA – Dying Americans receive inadequate pain management, little emotional support, and poor communication from their physicians according to a study released in the January 7, 2004 issue of the Journal of the American Medical Association. This is particularly true for those dying in institutional settings, according to researchers at Brown University.  Hospice care at home provided greater levels of satisfaction and fewer problems with pain management according to this national study examining family perspectives on care at the end of life.

Home-based hospice care received the highest levels of overall satisfaction from respondents.  More than 70 percent of family members of patients who received hospice care at home rated care as “excellent.”  The authors reported that “bereaved family mem-bers of patients with home hospice services (in contrast to the other settings of care) re-ported higher satisfaction, fewer concerns with care, and fewer unmet needs.”

The study stated that “high-quality end-of-life results when health care profes-sionals (1) ensure desired physical comfort and emotional support, (2) promote shared decision making, (3) treat the dying person with respect, (4) provide information and emotional support to family members, and (5) coordinate care across settings.”  These characteristics of quality end-of-life care are integral to the interdisciplinary hospice phi-losophy of care points out the National Hospice and Palliative Care Organization.  Among the suggested actions for improving care was a call for expanded use of hospice, both in homes and in other settings.

“While improvements have been made in the care of the dying, the results of this survey attest to the continued need to improve the quality of care for seriously ill and dy-ing persons,” says lead author Joan Teno, M.D., a professor of Community Health and Medicine at the Brown Medical School.
“This important study illustrates the significance of hospice at the end of life,” commented J. Donald Schumacher, Psy.D., president and CEO of NHPCO. “Growth in hospice usage in the U.S. reflects the high quality of care that is provided to patients, families, and loved ones. There is much to learn from the hospice model of care that will benefit other health care providers serving persons at the end of life.” 

Key findings from the report include:

• One in four people who died did not receive enough pain medication. This was 1.6 times more likely to be a concern in a nursing home than in hospice at home.
• One in two patients did not receive enough emotional support. This was 1.3 times more likely to be the case in an institution than hospice.
• Twenty-one percent complained that the dying person was not always treated with re-spect. Compared with hospice, this was 2.6 times higher in a nursing home and 3 times higher in a hospital.
• One in four respondents expressed concern over physician communication and treat-ment decisions.
• One in three respondents said family members did not receive enough emotional sup-port.
• Respondents whose loved ones received hospice in a home setting were the most sat-isfied. More than 70 percent rated hospice care as excellent. Fewer than 50 percent gave that grade to nursing homes or home health services.

NHPCO has been actively collaborating with Teno and her colleagues at Brown University and has adopted part of the survey used in this important study in the creation of their Family Evaluation of Hospice Care survey program.  This research tool, launched in 2003, is used by NHPCO member hospice programs to gather critical feedback from families served.  NHPCO has been working with hospice providers to measure family satisfaction for ten years.  However, this new survey tool provides more information, benchmarking data, and greater opportunities to improve care.
“NHPCO has embraced a quality agenda to lead the nation in improving end-of-life care,” remarked Teno.  NHPCO is working with Teno to develop additional evalua-tion tools suitable for palliative care programs, nursing homes, hospitals and other care providers. Ultimately, the information gathered through this survey program will improve end-of-life care for people dying in a variety of settings, not just hospice.

Additional information on the study, including narrative quotes from respondents, is available at www.chcr.brown.edu/dying/factsondying2004.htm. 

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