Dying Feel Abandoned by Docs in the End

MONDAY March 9, 2009 -- When there's no more that can be done for terminally ill patients, and the focus of care turns to keeping them comfortable before death, many feel as if their doctors have abandoned them, new research finds.

But for doctors, the dying and their families, continuing care is helpful for all concerned, and it helps provide a sense of closure for the family and for the doctor.

"The therapeutic part of the doctor-patient relationship extends to the end-of-life, and it's even more important then to honor that relationship," said study author Dr. Anthony Back, a professor in the department of medicine at the Fred Hutchinson Cancer Research Center, in Seattle.

Results of the study were published in the March 9 issue of the Archives of Internal Medicine.

According to background information, an important aspect of end-of-life care that's emphasized in expert guidelines is making sure that patients don't feel abandoned. But, how this actually works out in practice hasn't been well-studied.

Back and his colleagues recruited 31 physicians who were able to identify 55 people in their care who they felt would likely die within a year. All of the patients had either terminal cancer or advanced chronic obstructive pulmonary disease.

The researchers interviewed doctors, nurses, those who were dying and their caregivers at the start of the study, then again four to six months later, and then again at a year.

"A number of patients and families did feel that they were abandoned by their doctor," said Back. "I'm not sure that the doctors realized they felt this way. Doctors felt a lack of closure with these patients, but felt it was something that just affected them. They weren't sure how additional contact would help."

Back said that most doctors haven't been trained in dealing with end-of-life issues. Time constraints are also a factor.

But, he said, "even though the medical care system doesn't reward doctors for this type of care, many times when doctors do make these kinds of contacts, they find them very rewarding."

"Even just a phone call or two to check in is tremendously important to the family to let them know you're still paying attention," said Back.

"This is an area that the health-care profession is becoming much more mindful of," said Dr. Sean O'Mahony, medical director of palliative care at Montefiore Medical Center in New York City. "This study emphasizes that patients and caregivers attach value to how we communicate and how we end professional relationships with patients when that patient needs to transition to another care center."

Two other studies in the same issue of the journal focused on the costs of end-of-life care. The first, from researchers at Dana-Farber Cancer Institute in Boston, found that when people with advanced cancer and their physicians talk about end-of-life care and what the patient wants, that end-of-life care averages about $1,000 less per person and that the quality of death was higher for those who had a chance to tell their physicians what they wanted.

The second study, from Boston University researchers, looked at cost differences in end-of-life care for different racial groups, and found that in the last six months of life, health-care costs for whites averaged $20,166, for blacks it was $26,704, and for Hispanics, $31,702. The biggest reason for this disparity was the use of more life-sustaining interventions in blacks and Hispanics.

Finally, a survey of people in Oregon who requested physician aid in dying found that their major interest in requesting assistance in dying stemmed from concern about physical discomfort, a poor quality of life and loss of autonomy.

More information

Learn more about end-of-life care issues from the U.S. National Cancer Institute.

Posted: March 2009


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