Distributed September 11, 2000
For Immediate Release
News Service Contact: Scott Turner

Site of Death Atlas

R.I. offers nation a view of the future for higher quality end-of-life care

A Brown-led survey of 204 bereaved family members finds a need for better pain management, care planning, communication and pastoral counseling in R.I. nursing homes. Researchers have determined that Rhode Island ranks sixth in the nation in the percentage of residents who die in nursing homes.

PROVIDENCE, R.I. — As the American population ages, nursing homes are becoming the most frequent site of death. New research from Brown University suggests that Rhode Island, with the nation’s fourth-highest per capita elderly population, might help the nation plan for high-quality end-of-life care.

A study led by Joan Teno, M.D., finds that Rhode Island now ranks sixth in the nation, adjusted for age and gender, in the number of residents who die in nursing homes – up from 25th more than a decade ago.

“There is already an extraordinary proportion of people dying in nursing homes in Rhode Island, making the state a microcosm of what the nation will look like demographically in 20 years,” Teno said. The number of elderly is expected to increase substantially in all states by 2020. Nationwide, about 20 percent of Americans die in a nursing home. That figure is expected to reach 40 percent by 2020.

Teno recently led a survey of 204 bereaved family members in Rhode Island to determine where improvements in care were needed and how the changes might lead to better care nationwide. She found a need for better pain management, better care planning, better communication, and improved access to pastoral counseling. Among the survey’s findings:

  • Half of all families interviewed reported that their loved ones died in pain. Two-thirds rated the pain as severe more than half the time.

  • Although three-fourths of the persons dying in nursing homes had made an advance directive outlining their preferred course of treatment or naming a proxy decision-maker, nearly half of those persons said the advanced directive did not help in making treatment decisions.

  • Because those who are dying are often transferred to a number of different health care settings, family members reported that continuity of communication was severely lacking in their loved one’s health care.

  • Seventy-nine percent of families stated that a nurse really listened to their hopes, fears and beliefs as much as they wanted, but only 44 percent said someone spoke to them about their religious concerns and only 15 percent were referred to a religious or spiritual leader.

Teno conducted the survey with the Rhode Island Partnership to Improve End-of-Life Care. That partnership will present its findings and policy recommendations to R.I. state legislators within the next few weeks.

With more than one in three Rhode Islanders now dying in nursing homes, the partnership will recommend that the state appoint a task force on end-of-life care, that Rhode Island develop specific indicators to measure the quality of care for dying persons in all health care settings, especially nursing homes, and that the state report those results publicly.

In addition, the partnership will recommend that the state’s survey of nursing facilities make pain management a focus and that physicians and nurses be required to provide evidence of Continuing Medical Education credits in pain management.

Among its other recommendations, the partnership will ask that health care providers learn about palliative care, which emphasizes a full spectrum of pain management, symptom relief and support, including physical, psychological and spiritual care.

In November, the partnership will publish a guide showing the public how to demand better pain management for dying family members. “Family members should expect that pain can be controlled,” said Teno, associate professor of community health and medicine in the School of Medicine. “The most important thing is to have someone from the family there who is an advocate for the patient’s care.” The partnership’s findings and policy recommendations are available on the Web.

Teno and colleagues recently unveiled a Web site that delineates where Americans with chronic illness died in 1989 and in 1997. The “Brown Site of Death Atlas” depicts how rates of dying have changed at home, in hospitals and in nursing homes, in counties with more than 100,000 people.

Release of the findings coincides with broadcast of a new four-part PBS Series, On Our Own Terms: Moyers on Dying. The series premieres this week on WGBH (Channel 2 in Boston) and on other public television stations nationwide. The work of the partnership and of the Atlas research team is funded by grants from the Robert Wood Johnson Foundation, which is a co-sponsor of the PBS series.