One In Ten Hospice Patients Referred 'Too Late,' Study Shows

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.

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.