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Despite the long-held belief by many doctors that discussing
end-of-life issues with patients increases the patients' emotional
distress, such conversations can actually lead to improved quality of
life — both for patients and their loved ones, Dana-Farber Cancer
Institute researchers and colleagues have found.
In a study published in the Oct. 8 issue of the Journal of the American Medical Association,
investigators show that patients who reported having end-of-life
discussions with their physicians did not feel more depressed, worried,
or sad than those who did not.
Patients who recalled such talks were more likely to accept that
their illness was terminal and prefer comfort care over life-extending
therapies. They received less aggressive medical treatment, such as
resuscitation or admission to an intensive care unit, and they were more
apt to enroll earlier in hospice programs.
More aggressive medical care, which can cause upsetting side effects
and hamper communication with loved ones, was associated with worse
patient quality of life and worse adjustment by patients' bereaved
"Overall, patients who received less aggressive care at the end of
life were thought to have better quality of life by their family members
and other informal caregivers," says first author Alexi Wright, MD, a
hematology-oncology fellow at Dana-Farber and a research scholar in
Dana-Farber's Center for Psycho-Oncology and Palliative Care Research.
Particularly striking to Wright was the impact of patients'
end-of-life experiences on their loved one's ability to cope with their
losses. For example, individuals whose loved ones died in an ICU were
three times more likely to develop a major depressive disorder than
informal caregivers whose loved ones didn't receive such intensive care.
"Our results suggest that end-of-life discussions may have cascading
benefits for patients and their caregivers," the authors note. Adds
Wright, "The way people die has a profound impact on the way their loved
ones live on afterwards."
End-of-life conversations allow dying individuals to express wishes
for the medical care they want to receive. However, these talks require
facing their mortality and the limitations of treatments; about 20
percent of patients don't want to discuss death, according to Wright.
"This study extends our understanding of the end-of-life experience,"
says senior author Holly Prigerson, PhD, study principal investigator
and director of Dana-Farber's Center for Psycho-Oncology and Palliative
Care Research. "To the best of our knowledge, it is the first to show
that intensive, life-prolonging care adversely affects the dying
patient's quality of life, and the first to show that a patient's health
care and quality of life near death significantly influence the
adjustment of his or her bereaved survivors."
The analysis was based on interviews with 332 patients and their
caregivers at seven different outpatient sites in Connecticut, Texas,
and Massachusetts, including Dana-Farber. After a patient died,
investigators reviewed his/her medical record and interviewed the
informal caregivers (such as spouses or adult children).
These patients were part of Coping with Cancer, a six-year
longitudinal study of more than 600 adult terminally ill cancer patients
and their caregivers recruited between 2002 and 2008. Participants
tended to be younger, female, uninsured, and a member of an ethnic
minority group than the population at large.
Preliminary results were announced this past June during the American Society of Clinical Oncology's annual meeting.
Wright hopes the findings will not only spark additional research on
communication at life's end but also encourage more physicians to be
open with their dying patients. "I still take a deep breath before I
start an end-of-life conversation," says Wright, who sees patients with
gastrointestinal cancers. "We all wish we had different answers and
better news, but it's important for us to be both frank and empathetic
to give patients and their families a chance to prepare for death."
The study was funded by grants from the National Cancer Institute and
the National Institute of Mental Health. Wright received additional
support from the Friends of Dana-Farber Cancer Institute and the Program
in Cancer Outcomes Research at Massachusetts General Hospital (MGH) in
The paper's other authors include Tracy Balboni, MD, MPH, Susan
Block, MD, Jennifer Mack, MD, MPH, Alaka Ray, MD, Elizabeth Trice, MD,
PhD, and Baohui Zhang, MS, all of Dana-Farber; Vicki Jackson, MD, MPH,
of MGH and the Harvard Medical School Center for Palliative Care; Susan
Mitchell, MD, of the Institute for Aging Research in Roslindale, Mass.,
and Beth Israel Deaconess Medical Center in Boston; and Paul
Maciejewski, PhD, of Brigham and Women's Hospital (BWH) in Boston.
Block and Prigerson are also affiliated with BWH and the Harvard
Medical School Center for Palliative Care, Ray is also affiliated with
MGH, and Balboni is also with the Harvard Radiation Oncology Program.
Dana-Farber Cancer Institute (www.dana-farber.org)
is a principal teaching affiliate of the Harvard Medical School and is
among the leading cancer research and care centers in the United States.
It is a founding member of the Dana-Farber/Harvard Cancer Center
(DF/HCC), designated a comprehensive cancer center by the National