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 “Based on our clinical experience and previous research, we had a
sense that patients were not well informed about treatment options
at the end of life nor grounded in their own values,” said lead
author Dr. Daren K. Heyland at the Department of Critical Care
Medicine of Kingston General Hospital.
Patients need more help clarifying their values and forming informed
preferences as a means to making better treatment decisions at the
end of life, Heyland said.
“We are saying that when patients express a value of what’s
important to them, they don’t understand how their goals may compete
with each other,” he told Reuters Health by email.
The researchers surveyed 278 hospitalized patients who were 80 years
or older, or had advanced pulmonary, cardiac or liver disease or
metastatic cancer, as well as 225 family members.
Questionnaires asked patients or family to rate a series of general
end of life values in importance on a scale of 1 to 10, with 10
being the most important.
Patients and family almost universally rated comfort, having time
with family, not being attached to machines or tubes, not prolonging
death and letting “nature taking its course” as 10 out of 10 in
importance.
Other factors like living as long as possible, preserving life and
respecting the wishes of other family members regarding one’s care
tended to score somewhat lower.
Another series of questions addressed their preferred type of end of
life care. Almost a third of patients said they preferred “comfort
care” and another third preferred full medical care without
resuscitation, while only 12 percent wanted full medical care with
resuscitation. Answers were similar for family members, according to
the results in BMJ Supportive and Palliative Care.
Eight percent of patients and family said they were unsure of their
treatment preferences.
“The fact that people have a hard time formulating discrete plans
for care that stem naturally from their underlying values is
undoubtedly true,” said Dr. Scott D. Halpern of the Perelman School
of Medicine at the University of Pennsylvania in Philadelphia, who
was not part of the new study.
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“These are extremely challenging decisions for a whole host of
reasons,” Halpern told Reuters Health. “We know whether we like
vanilla or chocolate ice cream, we’ve made that choice hundreds or
thousands of times, and experienced what it is like to eat vanilla
or chocolate. Those of us who fly on airplanes a lot have strong
feelings about window versus aisle seats. Future decisions are
thereby informed by prior ones.”
You can’t have experience with end of life decisions until they are
happening, Halpern said.
The inconsistencies between stated values and actual preferences in
this study may also come from rating values on a scale of 1 to 10,
where so many are rated 10, he said – it makes it hard to
distinguish between them.
“It would have been more helpful to force people to rank these
values,” he said. “If everyone wants everything, it’s not going to
be so useful.”
But the study team’s conclusion is valid, he said.
“What you want for yourself in terms of how comfortable you are and
how long you live may not translate neatly into ‘should I get CPR if
I need it or not’,” Halpern said.
“We need a fair bit more research to really understand how to make
considerable and widely accessible improvements in advanced care
planning,” he said.
SOURCE: http://bit.ly/2eHoJWk BMJ Supportive and Palliative Care,
online October 6, 2016.
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