Listening in, Researchers Learn About
End-of-Life Communication
University of Rochester
Medical Center
May 31, 2012
World
Photo Credit: University of
Rochester Medical Center
What is
the best way to talk to someone about prognosis
and quality of life when serious illness
strikes? It turns out that no one had studied
that question through direct observation, until
the University of Rochester Medical Center
audio-recorded 71 palliative care discussions.
The data is published online in the Journal of
Pain and Symptom Management.
Lead author Robert
E. Gramling, M.D., Sc.D., associate
professor of Family Medicine at URMC, and
colleagues with a special interest in palliative
care, made several key discoveries:
-- In 93 percent of the conversations, prognosis
was brought up and discussed by at least one
person, with the palliative care team broaching
the issue 65 percent of the time. Also, the
prognosis information focused more often on
quality of life rather than survival, and on the
unique individual rather than the population in
general. Researchers noted that prior studies
support the link between open and honest
discussions about prognosis to clinical
benefits.
-- Both patients/families and physicians/nurses
on the palliative care team tended to frame
prognosis with more pessimism than optimism.
This was unexpected and different than the usual
patterns of communication, where talk of a
serious illness tends toward avoidance or
unbalanced optimism, researchers said. However,
emphasizing accuracy during the palliative care
consultation usually leads to treatment
decisions that match patient preferences.
-- The substance and tone of the conversations
varied, depending on whether the patient was
present and actively participating. For example,
prognosis conversations with family members
alone were more pessimistic and contained more
explicit information. It is possible,
researchers said, this type of conversation
takes place out of respect for the patient, who
might be sicker in this scenario, or is someone
who prefers to avoid information.
-- The closer to death, the more likely the
palliative care physician was to foretell or
forecast events. This might seem logical – that
doctors would guide patients and families in
what to expect as death approached – but in
reality this vulnerable and frightening time is
when families often report a void in
communication. The URMC data suggests that
palliative care consultations respond to this
need.
“Good communication might be the single most
important element of palliative care,” Gramling
said, “and through direct observation we have
demonstrated how these talks occur and the
important dimension they add at the end of
life.”
The study took place at Strong Memorial Hospital
at URMC, which has an in-patient hospice unit
and provides more than 1,000 palliative care
consultations annually at the hospital. With
prior consent from all study participants,
researchers placed high-definition digital
recorders in unobtrusive locations in hospital
rooms before the prognosis discussions took
place.
Afterward, researchers coded the conversations
based on whom was speaking, the topic, and how
the information was framed, and then analyzed
the data.
Examples of statements coded for prognosis: “It
is unlikely that you will live for more than a
month.”Also -- “I believe that your breathing
will continue to worsen, and we need to prepare
for that.”
An example of statements coded for length of
life: “I expect that you will live for days to
weeks, rather than months to years. About 30
percent of people live for a month or more.”
An optimistic framing statement: “The good news
is I expect you will live for a few more months.
| I believe your chances of surviving up to six
months are quite good.”
An example of a statement coded for quality of
life: “But you know you never know. Sometimes
people perk up for awhile. And it may be with a
little extra blood you'll perk up for awhile and
we'll all enjoy it if you do.”
Providing a palliative care consultation has
become much more complex in recent years. As the
demand for these services has risen, so has the
breadth of services. No longer is palliative
care an either-or proposition – either relieving
suffering or treating the illness medically. It
has evolved into a combination of the two, along
with opening communication with the patient and
family so they know what to expect.
“When patients and families clearly understand
the road ahead they can make the best decisions,
based on their own values, desires, and goals,”
Gramling added. “Without correctly framing the
facts, however, discussions can become
unbalanced or lack the context to be helpful.”
The National Palliative Care Research Center and
the Greenwall Foundation funded the study.
Rochester co-authors include Sally A. Norton,
Ph.D., RN; Maureen Metzger, M.S., R.N., and Jane
DeLuca, Ph.D., R.N., all of the UR School of
Nursing; Susan Ladwig, M.P.H., and Daniel
Schatz, of the UR School of Medicine and
Dentistry; Ronald Epstein, M.D., professor of
Family Medicine. Psychiatry, Oncology and
Nursing at URMC; and Timothy Quill, M.D.,
professor of Medicine, Psychiatry, and Medical
Humanities, and director of the Center for
Ethics, Humanities, and Palliative Care at URMC.
David Gramling, Ph.D., of the University of
Arizona, and Stewart Alexander, Ph.D., of Duke
University, also contributed to the study.
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