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Vol. LXIII, No. 15
July 22, 2011
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'Can’t Buy a Better Death’
Study Finds End of Life Can Be Peaceful, Less Expensive

On the front page...

Dr. Holly Prigerson speaks with Clinical Center chaplain Fr. Henry Heffernan prior to her talk on June 1.
Dr. Holly Prigerson speaks with Clinical Center chaplain Fr. Henry Heffernan prior to her talk on June 1.
As the campus lecture season wound down for the summer, it was hard to pass up the chance to hear about “Dying Better: Lessons from the Coping with Cancer Study,” given on June 1 by Dr. Holly Prigerson, director of the Center for Psycho-Oncology and Palliative Care Research, Harvard Medical School, Dana-Farber Cancer Institute.

After all, everyone checks out, and some of us may have to walk a tough road before we do. Thus it was good to be among attendees at the NIH end-of-life palliative care special interest group’s last meeting of the season. Mostly women, the audience was informed, seasoned and simpatico. You got to thinking, if I got the bad news, these are the kinds of people I’d want in my corner. Most of the Clinical Center’s spiritual ministry department was there, too.

Funded by NCI and NIMH, the Coping with Cancer Study followed about 700 patients with advanced metastatic cancer diagnoses at seven medical centers around the U.S., examining factors determining quality of care and quality of life. Taken into account were the effects of race/ethnicity, religious coping, end-of-life (EOL) discussions, cognitive and emotional acceptance of death and family caregivers’ anxiety on EOL decision-making.

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Looking at factors influencing the aggressiveness, or intensity, of care in the last days of life, the researchers found a kind of dose-response relationship: the more physicians employed aggressive measures, the lower the patients’ quality of life; the final days were also considerably more expensive. Hospice care at end of life, on the other hand, was more peaceful and less expensive. As Prigerson noted, “You can’t buy a better death.”

Aggressive care typically means that the patient ends up on a ventilator (and thereby can’t speak), needs resuscitation and ends up dying in an intensive care unit.

Prigerson and her colleagues discovered an interesting difference between patients described as “religious copers” versus those who considered themselves “spiritual.” In a finding that some called counterintuitive, patients who used religion to cope with their cancer wanted and got more aggressive care at the end of life, as if more days alive meant giving God a wider window of opportunity to intervene.

Future Directions in End-of-Life Care

As part of its 25th anniversary commemoration, NINR is holding a summit on “The Science of Compassion: Future Directions in End-of-Life and Palliative Care,” on Aug. 10-12 at the Hyatt Regency Bethesda. More information is available at www.ninr.nih.gov/ResearchAndFunding/ scienceofcompassion. htm.

“They felt their main job was to sustain life,” she said, characterizing their emotional state as “frantic, desperate and fear-based.”

She speculated that these patients were sort of “religious wannabes,” latecomers to religious practice who were, in many ways, simply trying to perform well for the home crowd—the church back home praying and pulling for them.

Spiritually inclined patients, on the other hand, were different, Prigerson said. They were less aggressive about EOL care and more peaceful; there was no stadium to impress.

“Once patients’ spiritual needs are met, the less preference there is for aggressive care,” she said, “and the more hospice is used. There are dramatic cost savings associated [with hospice care] too. There were significantly lower costs for those who felt spiritually supported.”

Prigerson discovered that most study participants—close to 60 percent—wanted to know how long they had to live. “I think that’s courageous,” she said.

Her team also found that EOL discussions were not associated with more stress or more hopelessness; they had no effect on patients’ survival. “It doesn’t kill them,” she quipped.

She stressed the importance of tailoring an EOL discussion “to where the patient is psychologically.” Some can become numb upon hearing a poor prognosis.

“You need to work through that initial terror and horror [which about 58 percent of study subjects reported], then you get better at processing and benefit from the discussion,” she said; there is a psychological “readiness zone” that experienced caregivers can recognize.

EOL discussions typically involve three components: curability, prognosis and treatment game plan. “The goal is to do it sooner in the course of illness, to offer more benefit to more people,” Prigerson suggested.

The Coping with Cancer Study found that EOL discussions were markedly less beneficial in the black population than among whites and that blacks in the study “were much more likely to die in the ICU.” Her theory is that the race and culture of the bearer of bad news matters; she lamented the dearth of black oncologists to play that role.

“We need more EOL discussions, but they have to be psychologically sensitive and culturally competent,” she said.

Another factor thwarting the ideal of a “therapeutic alliance” between patient, health care provider and family member occurs with subtle “impairment” in the patient’s cognition.

How then, does one die best in the shadow of a dire prognosis? Prigerson reported that several factors predict quality of death, including peacefulness, being treated as a whole person by your physician, having a “do not resuscitate” order in place and learning the news from a calm caregiver, not one who is extremely anxious.

She emphasized the importance of providing spiritual support to those patients who are religious, and of conducting EOL discussions early and in a culturally competent manner, but not to those so numb they cannot bear harsh news.

Caregivers also need to make plain to patients that there are “states worse than death,” Prigerson added.

During a brief Q&A, Prigerson noted that the Coping with Cancer Study, which ran from 2002 to 2008, has recently been renewed. Some 70 percent of those invited to participate in the first iteration actually took part; Prigerson acknowledged that simply agreeing to participate in the study itself constituted an intervention.

“There were a lot of hankies being handed out at these interviews,” she noted. “Many patients were glad to participate and found it rewarding.”

One of the chaplains underscored the importance to the bereavement process of medical oncologists’ personal expression of sympathy to survivors.

“I don’t think oncologists realize how patients hang on their every word, and how they are respected and appreciated,” Prigerson said. “Here’s something they can do that really matters.” NIHRecord Icon


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