Researcher hopes her findings on end-of-life care will shape R.I. policy on nursing homes

'There are already an extraordinary number 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,' said Joan Teno, who conducted the research

Nursing homes, especially those in Rhode Island, are increasingly where older Americans die.

A study led by Joan Teno, M.D., shows that more than one in three Rhode Islanders who die do so in a nursing home ­ up from 19.5 percent just over a decade ago. The finding may force the state to confront the quality of its end-of-life care.

Teno, associate professor of community health and medicine, recently led a survey of 204 bereaved family members in Rhode Island to determine where improvements in care were needed and how such changes might lead to better care nationwide.

She found a need for better pain management, advance care planning, communication, and 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 an advance directive outlining their preferred course of treatment or naming a proxy decision-maker, nearly half of those persons said that 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.

Next week the partnership will present the findings to state legislators along with policy recommendations. The partnership will suggest that the state appoint a task force on end-of-life care, and recommend that Rhode Island develop specific indicators to measure the quality of care of dying persons in all health-care settings, especially nursing homes, and report the results publicly.

In addition, the partnership will recommend that the state's survey of nursing facilities makes 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 for the public on how to demand better pain management for dying family members. "Family members should expect that pain can be controlled," said Teno. "The most important thing is to have someone from the family there who is an advocate for the patient's care."

Rhode Island has the fourth highest per-capita population of elderly in the nation. The per-capita elderly population 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.

"There are already an extraordinary number 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 most important thing we can do is to recognize that demographic uniqueness and work across all communities statewide to ensure quality medical care for people in nursing homes. That way, we will make the most of this opportunity to provide the knowledge for the rest of the nation for improving end-of-life care. "

Some lawmakers and policymakers have already taken notice of the findings. In late August, R.I. Sen. Jack Reed met with Teno during a campus visit. "As a member of the Special Committee on Aging, we grapple with these issues at the federal level every day," Reed said. "The data derived by Dr. Teno will be very helpful in guiding lawmakers as they seek to develop solutions to deal with these problems."

Terrie Wetle, deputy director of the National Institute on Aging, agrees. A specialist in ethical issues surrounding geriatric care, Wetle said the partnership could make "substantial contributions" to advancing care of persons facing death. "Improved understanding of the experiences and circumstances as death approaches is essential if we are to improve care at the end of life," she said.

PBS series examines end-of-life care

To learn more about the issues surrounding end-of-life care, Teno recommends watching the four-part PBS series, "On Our Own Terms: Moyers on Dying." The series will air Sept. 10-13 from 9-10:30 p.m. on WGBH, Channel 2, and on Sept. 8, 24, 25 and Oct. 1 from 9-10:30 p.m. on WSBE, Channel 36.

The series is sponsored in part by The Robert Wood Johnson Foundation, which also finances some of Teno's research.

The series focuses on individuals searching for ways to recognize and talk about dying as more than a medical event; examines the evolution of palliative care; looks at issues surrounding efforts to control how we die; and follows individuals working to change public policy to improve the care of the dying.