New studies refocus the spotlight on end-of-life care

Despite added attention to the issue, research suggests that physicians still have much to learn about caring for dying patients

By Vida Foubister, amednews staff. June 19, 2000.

When the SUPPORT project's findings on end-of-life care first became public, they focused national attention on the need to improve care for the dying.

SUPPORT, the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment, documented the failure of physicians to communicate with patients about their care preferences at the end of life and to adequately treat their patients' pain and suffering.

"It was the starting point for reform in the whole end-of-life arena," said Karen Orloff Kaplan, MPH, ScD, president and CEO of the Partnership for Caring: America's Voices for the Dying in Washington, D.C.

Now a supplement published by the Journal of the American Geriatrics Society in May provides even greater detail about patients' experiences at the end of life. It also summarizes the project's previous findings and suggests how they can be used to improve future treatment of patients and influence federal policy to ensure payment for that treatment.

"We haven't quite as a culture turned the corner to see this as a public health and political issue," said Joanne Lynn, MD, co-leader of SUPPORT and director of the Center to Improve Care of the Dying at RAND in Arlington, Va.

"While we have to change professional education and we have to change the availability of medications and we have to change how doctors and patients talk with each other, we also have to change how Medicare pays for things," she said.

Funded by the Robert Wood Johnson Foundation, the SUPPORT project collected data from more than 10,000 patients with serious illnesses who were treated in five hospitals from 1989 to 1994. It has produced nearly 100 articles -- 29 of which appear in the new supplement.

Dying experiences differ

Among the supplement's most novel articles are several that describe and then compare the experiences of dying patients with different diagnoses. The disease categories include chronic obstructive pulmonary disease, congestive heart failure, cancer, end-stage liver disease with cirrhosis, acute respiratory failure, multiple organ system failure with sepsis, lung cancer and chronic obstructive pulmonary disease.

This kind of data previously has not been available to physicians or patients, said Russell S. Phillips, MD, the supplement's lead editor.

"It provides information [not only] on what kinds of symptoms patients are likely to experience and what kinds of symptoms need to be treated, but also what happens to patient's preferences over time as they get closer to death," said Dr. Phillips, an internist at Beth Israel Deaconess Medical Center in Boston.

A comparative analysis of those findings emphasizes the difference among experiences encountered by patients with these illnesses.

"For patients with heart failure, death was often unpredictable. So even very close to death, they looked like they could live for another six months," Dr. Phillips said. "Whereas patients with lung cancer really declined dramatically as death approached, so their death, when it did occur, was very much expected."

Another long-standing issue addressed in the supplement is the value of tube feeding and intravenous nutrition at the end of life.

"In our data, by a pretty solid analysis, most patients do not appear to benefit from artificial feeding," Dr. Lynn said. "It seems to worsen their chances of surviving."

A further article challenges reported assumptions about why the SUPPORT intervention, which was implemented after an initial observation phase, failed to improve the experience of dying patients.

"Certainly, in the public eye, the reason the SUPPORT intervention failed was that doctors ignore people's instructions and won't talk to people. It's sort of all on the doctor's shoulders," Dr. Lynn said. "But our sense was there were very strong forces holding old habits in place, and that people claimed they were making decisions but really were following habit patterns."

Moving forward

Despite the ongoing dialogue on palliative care and treatment at the end of life, "most patients still don't have access to physicians who are very knowledgeable about palliative care," said Russell Portenoy, MD, chair of the Dept. of Pain Medicine and Palliative Care at Beth Israel Medical Center in New York, N.Y.

"I don't think that there's much evidence that we've really had a substantial impact on the care being rendered at the bedside and in the homes of patients with progressive incurable illnesses in terms of meeting the needs for better symptom control, better family support, better support for psychosocial or spiritual concerns and better practical support at home,"

Even in Oregon, where legislation enabling physician-assisted suicide has brought national attention to the issue of end-of-life care, a study published in the June issue of the Western Journal of Medicine shows that pain levels are increasing among dying hospitalized patients. Complaints of high pain levels increased from 33% to 57% in late 1997, and remained at 54% in late 1998.

"We need ongoing data to tell us what's important, what's not, and where we still need to put a lot more effort at policy and system change," said Susan Tolle, MD, director of the Center for Ethics in Health Care at Oregon Health Sciences University.

ADDITIONAL INFORMATION:

Support for life's last acts

The Robert Wood Johnson Foundation funded SUPPORT in the hopes that the intervention developed in the project would improve care at the end of life.

"When we realized it hadn't, they were smart enough to realize that this isn't where the ball should be dropped, but it's a starting point," said Russell S. Phillips, MD, lead editor of the Journal of the American Geriatrics Society supplement.

Three years ago, the RWJ Foundation launched "Last Acts," a community-based initiative that aims to stimulate dialogue on death-related issues and to help individuals and organizations find better ways to care for the dying.

"This campaign has picked up where SUPPORT left off and is doing an enormous amount to improve end-of-life care for patients and their families," said Karen Orloff Kaplan, MPH, ScD, president and CEO of Partnership for Caring: America's Voices for the Dying, in Washington, D.C.

More recently, RWJ, with the American Hospital Assn., AMA, National Hospice and Palliative Care Organization, and American Assn. of Homes and Services for the Aging, co-sponsored a "Circle of Life" award to bring attention to innovations in end-of-life care.

The inaugural recipients of the $25,000 award, announced last month, were the Franciscan Health System in Tacoma, Wash., the Hospice of the Florida Suncoast in Largo, Fla., and the Louisiana State Penitentiary Hospice in Angola, La.