Dying Need More than Medical Care

Top-notch biomedical care is critical at the end of life, but Duke University Medical Center and Durham Veterans Administration Medical Center researchers say addressing dying patients­piritual, psychological and social concerns is as important for promoting a good death.

Funded by the U.S. Department of Veterans Affairs, the researchers sampled 75 local patients, families, physicians, nurses, social workers, chaplains and volunteers. The participants, ranging in age from 26 to 77, were separated by role and convened into focus groups to discuss their experiences with end-of-life care and to reflect on what made those deaths good or bad.

 

Four of the broad themes that emerged nin and symptom management; clear decision making; preparation for death; and completion, or the review of faith and meaning at the end of life nve been documented in recent palliative care literature. But the focus groups also introduced two novel components of a good death: the importance of terminally ill patients­£ontributions to the well-being of others and the need for dying patients to be affirmed as "whole persons."

 

"We fully expected to find that dying patients needed care, but we did not consider the extent to which they also needed to reciprocate," the researchers wrote in the May edition of Annals of Internal Medicine. "Social psychologists describe this need for 'generativity' as one of the great emotional tasks of human development, particularly during later life. Dying patients need to participate in the same human interactions that are important throughout all of life."

 

Focus group participants repeatedly stated the importance of affirming the patient as a unique and whole person. Patients said they appreciated health care providers who showed empathy, and family members said they had been comforted by those who treated their relatives as real people - complete with individual lives, values and preferences - rather than as "diseases."

 

"There has been a national priority placed on end-of-life care in recent years," said lead investigator Karen Steinhauser, a health scientist at the Durham Veterans Administration Medical Center and senior fellow with the Duke Center for the Study of Aging and Human Development. "While we know there is no 'right way' to die, we are still trying to understand what constitutes a good death."

 

Findings from those discussions offer a framework for clinicians, educators and researchers to consider as they work with dying patients and their families, said Steinhauser, who serves as an assistant research professor at Duke.

 

"Biomedical aspects of end-of-life care are crucial but merely provide a point of departure toward a good death," concluded the Annals of Internal Medicine article, which was titled "In Search of a Good Death: Observations of Patients, Families and Providers." "When physical symptoms are properly palliated, patients and families may have the opportunity to address the critical psychosocial and spiritual issues they face at the end of life."

 

While all six themes were present in patient, family and non-physician health care provider focus groups, the groups did reveal some distinctions. Family members and patients spoke from their roles as patient advocates and care recipients. Social workers discussed dying from a case management perspective and focused on the needs of the family. Chaplains addressed ethical issues and the tension between individual and community rights.

 

The physicians­iscussions, meanwhile, "were uniformly more medical in nature," with no mention of patients­esires to contribute to others, the report said. Nor did physicians discuss the need for life review and completion.

 

"This is not to suggest that these themes are unimportant to physicians; rather, they are not a usual focus of treatment," the researchers wrote. They added, "patients and families want relationships with health care providers that affirm this more encompassing view."

 

The primarily medical focus of physicians is not surprising given the dearth of palliative care education offered at many medical schools, said study co-author Dr. James Tulsky, director of the Durham V.A. Medical Center­Program on the Medical Encounter and Palliative Care and associate director of the Duke Institute on Care at the End of Life.

 

"There­no reason to believe that just because you go to medical school you can tell a person that they are going to die in three months," said Tulsky, who leads a two-day palliative care training session at Duke. "Frankly, most physicians are not born with these skills. But they can be learned."

 

Other co-authors of the study are Elizabeth Clipp, Maya McNeilly, Dr. Nicholas Christakis and Lauren McIntyre.

 

The study is a part of the ongoing work at Duke­Institute on Care at the End of Life, said Dr. Keith Meador, the institute­director. Opened earlier this year and based in the Duke Divinity School, the institute is an interdisciplinary effort to look at issues surrounding death and dying in the world today.

 

These findings should spur further research into end-of-life care and provide leadership in the types of questions that need to be answered, Meador said.

 

"Dying is part of living. Dying well is a part of living well," he said. "We need to reshape our idea of what a good death is according to what we learn from dying persons and their families. Once we do, then we can look at ways to measure and foster that new understanding."

 

One impact this research can have is to foster improvements in the training of physicians and other care givers, he said. It also reemphasizes the need for an interdisciplinary approach to caring for dying patients and their families.

 

"This is not embodied in one person," Meador said. "It requires multiple persons to be working together."

 

The Duke and V.A. research team has several follow-up projects planned, Steinhauser and Tulsky said. A nationwide survey of 2,000 family members and care givers is already undergoing peer review. The researchers also plan to develop a method to assess quality of life at the end of life.