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Novel approach to end-of-life care considers whole community's values

Last Updated: 2001-09-25 16:36:04 EDT (Reuters Health)

By Steven Reinberg

WESTPORT, CT (Reuters Health) - In line with a 1997 recommendation of the Institute of Medicine, researchers have adopted a community-based approach to studying how to improve end-of-life care

"We have developed a way of using data to improve the quality of care and the quality of life community-wide," Dr. Ira Byock from the University of Montana, Missoula, told Reuters Health. "We have created a conceptual framework for communities so that they can continuously improve the quality of care and support during illness, dying and grief."

In Missoula, Dr. Byock and colleagues asked patients and family members what medical and social services were important to them as part of caregiving, illness, dying and grief.

"We looked at hopes and then we measured outcomes; that is, what those in the midst of an illness or those having gone through the death of a loved one actually experienced. And we zeroed in on the areas where the people's hopes are not matched by the outcomes," Dr. Byock explained.

In each instance where the researchers found a gap between expectations and reality, they engaged the public and the professional community in a dialogue to try to bridge that gap. To bring community values in line with actual outcomes, they developed an educational program and practical tools that could be used community-wide, which they describe in the September issue of the Journal of Pain and Symptom Management.

"For example, we now use one pain scale for the whole community of Missoula. And to develop a single advanced directive form, we went door-to-door to get opinions and develop a form called 'My Choices,' which is used throughout the community," Dr. Byock said.

The same conceptual framework can apply in a single patient or family dialogue with physicians, he said. "It is important to elicit people's values and help them base decisions on those values, because values can clarify preferences for care," Dr. Byock stressed.

J Pain Symptom Manage 2001;22:759-772.

-Westport Newsroom 203 319 2700

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Report Urges More Attention On Cancer Care

By Troy Goodman

The Salt Lake Tribune

Wednesday, June 20, 2001

When an advanced cancer patient died from his disease recently, Utah pain expert Kyle Matsumura took some comfort in the 60-year-old man's passing on.

Matsumura was able to ease the suffering, after all, since several of the lung cancer patient's final weeks were spent under the watchful eye of St. Mark's Hospital palliative care program, were Matsumura works. Doctors there provided pain medication, physical and emotional support far beyond what an oncologist could provide.

But that level of care is not universal in Utah or other U.S. hospitals, according to a National Academy of Sciences advisory panel. The group said doctors too often ignore supportive therapy while they are single-minded in search of a cancer cure.   

"Not every physician has the time to commit to palliative care," Matsumura said Tuesday, in response to the panel's report. "There are magnifying factors [for dying patients'] symptoms."

The panel, a group assembled by the nonprofit Institute of Medicine and other researchers, found most American cancer patients do not get an adequate mix of cancer symptom control and freedom to choose disease-fighting drugs. A pair of Salt Lake City-based pain experts, both working at Huntsman Cancer Institute, were among those who helped write the report.

"It's a suprising realization for many people," said Sharon Weinstein, who heads the Huntsman palliative care program and worked with colleague Joseph Simone to help craft the report.

"These symptom management guidelines and other elements of supportive care need to be integrated from the point of diagnosis" and not later, Weinstein said.

While cancer cure rates for some specific forms of the disease are on the upswing, the panel report said, half of all cancer patients die within a few years of that diagnosis point. The toll comes to 550,000 American lives annually, cancer data show. 

"In accepting a single-minded focus on research toward cure, we have inadvertently devalued the critical need to care for and support patients with advanced disease and their families," the panel concluded.

The result: Many patients are overloaded with mental anguish, anxiety, depression, fear and isolation during a time when their life is already a living hell, according to the report, entitled "Improving Palliative Care for Cancer."

To improve supportive care measures, the National Cancer Institute, the government's anti-cancer arm, spent less than 1 percent of its 1999 budget of $2.9 billion on research and training related to palliative care, the report found.

Huntsman, which has been running a palliative care clinic for several years and treats about 1,500 patients each year for severe pain management, doesn't track clinic costs as they relate directly to total budget dollars. But officials there said about 10 percent of the funds used in clinical care are spent on support and palliative care.

More than half of all dying patients use hospice services, experts said, but health insurance programs often force patients to choose between such end-of-life programs or treatments aimed at prolonging their life.

The ideal, Weinstein and Matsumura said, would be benefits that include both cancer-care measures.