Researchers Surprised to Find Not All Caregivers
Want Doctor’s Advice at End-of-Life
‘It is rare that a research paper changes clinical
practice, and I think this one will’ - president of the American
Thoracic Society
Aug. 10, 2009 – The lie about health care reform
requiring some kind of review process that could lead to euthanasia is
despicable, but it has brought attention to end-of-life planning, which
is seldom discussed due to its sensibility. One new study on the subject
has found some of the caregivers for critical care patients do not want
to meet with their patient’s doctor.
The research, found that surrogates are virtually
split when it comes to how much guidance they want to receive from
physicians in making end-of-life medical choices on behalf of critically
ill patients, according to lead author of the paper, Douglas B. White,
of the University of Pittsburgh Medical Center.
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"In fact, what we found was that, while a slight
majority did prefer doctors to help them make those difficult decisions,
many felt that it was a decision they wanted to make without guiding
input from doctors other than an explanation of the options," said Dr.
White.
This study, with results that challenge long-held
beliefs in the critical care community, will be published in the August
15 issue of the American Journal of Respiratory and Critical Care
Medicine.
At the end of life, critically ill patients
frequently require surrogates to make their medical decisions for them,
who, in the absence of advance directives from the patient, must rely on
what they believe would have been the patients' desires.
"This puts an enormous emotional burden on
surrogates; not only are they losing a loved one, they also may feel
burdened by guilt about allowing the patient to die." said Dr. White.
"It was therefore assumed by some in the medical
community that a doctor's dispassionate advice could reduce some of that
burden and help surrogates make a good decision with less
second-guessing themselves. However, there was little or no research to
support this assumption."
The authors note they were motivated to perform the
study because of the lack research on the question. They wrote,
“Although there is a growing belief that physicians should routinely
provide a recommendation to surrogates during deliberations about
withdrawing life support, there is a paucity of empirical data on
surrogates’ perspectives on this topic.”
Dr. White and colleagues set out to test that
assumption, recently formalized as a recommendation by a number of
critical care societies, by asking surrogates of critical care patients
to watch and respond to two videos.
The videos depicted a hypothetical ICU "family
conference" in which surrogates must decide whether to continue or
withdraw life support from a loved one who has a small chance of
survival with continued intervention, but a high likelihood of severe
functional impairment in the long-term, including dependence on a
ventilator.
Both videos were identical in all ways except one:
in one version, the doctor says that the most important thing is for the
surrogate to "make the choice that's consistent with [the patient's]
values," but states that only the surrogate could make that decision; in
the alternate version, the doctor offers his opinion that the patient
would likely not have wanted to continue aggressive treatment given the
likely outcome.
A total of 169 surrogates who were recruited from
four ICUs at the University of California San Francisco Medical Center
to watch the films in randomized order and respond to it. The
researchers used a multi-method analysis to code the responses and
validated their analyses with the surrogates themselves to ensure an
accurate and complete qualitative assessment of the data.
To their surprise, Dr. White and colleagues found
that only a slight majority, 56 percent, of surrogates expressed a
preference for the version in which the physician offered an opinion to
limit life support.
A slight minority, 42 percent, preferred no
recommendation, and the final two percent had no preference.
"This is an important article that has changed my
clinical practice," said J. Randall Curtis, M.PH., M.D., president of
the American Thoracic Society and Professor of Medicine Pulmonary and
Critical Care Medicine Section Head, Harborview Medical Center in
Seattle, WA.
"I had previously assumed that almost all families
would want physicians' recommendations, but these findings indicate that
there is no such consensus among surrogates. I suspect that physicians
can do more harm by withholding a recommendation that is desired than by
providing a recommendation that is not desired, but this study suggests
we should ask rather than assume."
Just over half (51 percent) of the surrogates
expressing a preference for receiving their doctors' advice believed
that it was the doctor's role to provide that opinion, whereas nearly
four of five (79 percent) who preferred not to receive the advice saw it
as overstepping.
"A very important part of American bioethics is
respecting patient's choices," said Dr. White. "The family's most
important job when acting as a surrogate decision maker is to give voice
to the patient's values. I think our research highlights that the
physician's job is to be flexible enough and insightful enough to
respond to the surrogate's individual needs for guidance.
"It is rare that a research paper changes clinical
practice, and I think this one will," said Dr. Curtis.
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