Terminally ill patients in the U.S. these days face expensive care and prolonged declines. And many hospitals lack a designated palliative care team, which focuses on patient comfort at any point in the life cycle but becomes more critical at the end. In terms of care, the solution to our medical system's woes might be as simple as a conversation about how we die.
"Many clinicians are afraid to talk about prognosis—how long a patient may have to live," says Alexander Smith, a palliative care physician at the University of California, San Francisco. "Talking about death in America is forbidden, a taboo topic."
Voices clamor to be heard in the discussion about end-of-life care. Patients prefer to die at home and in comfort. Physicians struggle to speak to patients they have been trying to save but worry about legal issues. Politicians debate the best way to curb rising health care costs and shun "death panels." Amid this fervor, researchers in Sweden found last year that conversations about imminent death are associated with improved care and less pain and suffering. Now, a team at Harvard Medical School reveals more detail about the social and psychological factors that affect quality of death.
The researchers interviewed 396 advanced cancer patients and their caregivers, and then followed up a few months after death. Nine psychosocial factors were found to make a significant difference in the quality of patients' final days.
In surveys, patients define (pdf) a good death as one where they can manage their pain, remain lucid, feel prepared and interact with family members. In the new study, patients with a higher quality of life during their final days included those who avoided hospitalizations and stays in the intensive care unit (ICU), were not worried about death, prayed or meditated, received care at home, did not use a feeding tube, were visited by a pastor in the hospital or clinic, did not undergo chemotherapy in the final week of life, and felt an alliance with their oncologist regarding therapy. The results were published online July 9 in the Archives of Internal Medicine.
ICU stays in the final week of life mattered the most, accounting for 4.4 percent of variance in outcomes, whereas a sense of alliance between patient and physician accounted for 0.7 percent. Much of the variance remained unexplained. Other influences could include underlying cancer biology or even a patient's personality and general outlook on life, says Holly Prigerson, a psychiatry associate professor at Harvard Medical School and the study's senior author. But, these factors could give policymakers and hospitals a cost-effective road map for end-of-life care decisions in the future. Prigerson cites the frustration and helplessness that oncologists feel when their patients are beyond curative care. Withdrawal, however, apparently is not the answer. "Just being present and being there, rather than abandoning patients and withdrawing," she says, "matters a tremendous amount to patients."
But not all of the findings have clear policy implications, says Diane Meier, a professor of geriatrics and internal medicine and director of the Center to Advance Palliative Care (CAPC) at Mount Sinai School of Medicine in New York City. How much a patient worries or whether they find comfort in prayer may be hard to change. But already, physicians are trying to keep patients approaching death out of the ICU. Meier says she expects more clinics, hospitals and offices to welcome pastors. Finally, training physicians to convey a sense of commitment and alliance with their patients can help. "These are teachable skills that right now are not in the curriculum at medical schools," she says.