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June 28, 2007
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End-of-Life Care
One in 10 Hospice Patients Referred “Too Late,” Study Shows

A new study led by Brown University researchers shows that one out of every 10 families said their dying loved ones were referred “too late” for hospice services, resulting in unmet needs such as unrelieved pain. Results appear in the Journal of Pain and Symptom Management.

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PROVIDENCE, R.I. [Brown University] — One in 10 hospice patients are referred “too late” for services, resulting in unmet needs such as adequate pain relief or emotional support, according to a new study spearheaded by Brown University researchers.

The study is based on surveys completed by bereaved family members and designed to gauge the quality of hospice programs, which provide medical care with social, emotional and spiritual support for the dying. Families who reported having a loved one referred “too late” to hospice were much more likely to be dissatisfied with the care received, reporting more pain management problems, lack of coordination of care, and other unmet needs.

Negative perceptions stemming from late referrals ranged from 0 percent to 28 percent based on the hospice program and 7 to 15 percent based on state averages. States with the highest satisfaction rates were Alaska, Vermont, Arizona, New Hampshire and Louisiana. States with the lowest satisfaction rates were South Carolina, Washington, Rhode Island, Connecticut and Nevada. Results of the research appear in the Journal of Pain and Symptom Management.

States and their rate of “too late” hospice referrals

  9.7  Alabama
  6.1  Alaska
  8.6  Arizona
11.0  Arkansas
12.8  California
11.9  Colorado
13.6  Connecticut
12.3  Delaware
11.0  Florida
10.4  Georgia
12.4  Hawaii
10.7  Idaho
11.6  Illinois
11.1  Indiana
  9.8  Iowa
11.5  Kansas
10.5  Kentucky

  9.3  Louisiana
11.3  Maine
11.6  Maryland
12.6  Massachusetts
12.2  Michigan
11.7  Minnesota
10.0  Mississippi
11.7  Missouri
12.1  Montana
11.2  Nebraska
13.2  Nevada
  9.3  New Hampshire
11.4  New Jersey
11.1  New Mexico
12.4  New York
10.7  North Carolina
11.3  North Dakota

10.6  Ohio
11.3  Oklahoma
12.4  Oregon
10.4  Pennsylvania
13.6  Rhode Island
15.0  South Carolina
12.3  South Dakota
11.5  Tennessee
10.1  Texas
11.2  Utah
  7.8  Vermont
13.1  Virginia
13.9  Washington
10.9  West Virginia
10.8  Wisconsin
11.9  Wyoming
20.5  Puerto Rico

Joan Teno, professor of community health and medicine at The Warren Alpert Medical School of Brown University, associate medical director of Home & Hospice Care of Rhode Island, and lead author of the journal article, said the study results are a pleasant surprise.

Even though experts recommend at least a three-month hospice stay, the average length of stay is less than two months. In fact, the National Hospice and Palliative Care Organization reports that 30 percent of people served by hospice die in seven days or less. So Teno and her team expected to find a close relationship between length of stay and perceived quality of care. In other words, they expected to find that when there was a short stay, there was an unhappy family.

“Quite to our surprise, we didn’t see a strong association. If we did, dissatisfaction rates would have been much higher,” Teno said. “What I think the results are telling us is that the hospice industry really knows how to rally the troops. Doctors, nurses, counselors, clergy, social workers – they come in and work almost like a SWAT team. They immediately assess the needs and expectations of a patient and their family and make sure those needs and expectations are met so that the dying experience is comfortable. They pull together services fast. And this is reflected in the satisfaction ratings. Most families felt that a hospice referral came at the right time – even if it didn’t.”

The study is based on the Family Evaluation of Hospice Care, a national Web-based data repository created two years ago by Brown University and the National Hospice and Palliative Care Organization. The database holds the results of more than 250,000 family surveys from nearly 1,000 hospice programs – or about one-third of all hospice programs in the country.

“As this study indicates, Rhode Island has one of the highest rates of family members stating their loved ones were referred to hospice too late,” said Analee Wulfkuhle, president and chief executive officer of Home & Hospice Care of Rhode Island. “These findings should serve as a call to action to the Rhode Island healthcare community to encourage consideration of hospice sooner rather than later. Late referrals deny individuals with serious illnesses and their families the full benefit of hospice care.”

To better understand the big variation in perceptions on the timing of hospice care (in Vermont, only 7 percent of families reported being referred “too late” while in South Carolina that number was 15 percent), Teno and her team will continue their work under a new American Cancer Society grant. For the project, which begins this month, researchers will visit eight hospice sites across the country – sites with both high and low survey satisfaction ratings – to glean lessons about how to best deliver high-quality care. Their findings will be reported in a series of case studies that hospice programs can use to improve their programs.

The research team includes Janet Shu, M.D, a new graduate of The Warren Alpert Medical School of Brown University, and Ramona Rhodes, M.D., an assistant professor of medicine and an attending physician at Rhode Island Hospital. David Casarett of the University of Pennsylvania School of Medicine and Carol Spence and Stephen Connor of the National Hospice and Palliative Care Organization also conducted the research.

The Robert Wood Johnson Foundation and the Alzheimer’s Association funded the work.

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