You are critically ill and
can no longer orchestrate your own care. Life-sustaining treatment decisions must be
made. Fortunately, you have completed
your advance directives and made your preferences and values known to a
surrogate whom you have selected to represent you if these circumstances ever
arose. What happens to you now will largely depend on decisions involving your
surrogate and healthcare clinicians. Will they discuss and honor your wishes?
This is a question researchers
have wondered about, too. To what extent are a patient’s wishes honored by doctors
and surrogates? In research
including 54 physicians and 159 surrogates for 71 patients, audio-recorded
conferences in which life-sustaining treatment decisions for an incapacitated
patient near the end of life were held. Conversations
were coded to keep track of the number of times clinicians or surrogates
discussed the patient's previously expressed treatment preferences or values.
Treatment recommendations by clinicians that incorporated the patient's
preferences or values were also coded. These were the results:
1)
In 30% of conferences, there was no
discussion about the patient's previously expressed preferences or values.
2)
In 37%, clinicians and surrogates
discussed both the patient's treatment preferences and values.
3)
In the remaining 33%, clinicians and
surrogates discussed either the patient's treatment preferences or values, but
not both.
4)
In more than 88% of conferences,
there was no conversation about the patient's values regarding autonomy and
independence, emotional well-being and relationships, physical function,
cognitive function, or spirituality.
5)
On average, 3.8% of words spoken
pertained to patient preferences or values.
Conclusions:
In roughly
a third of ICU family conferences for patients at high risk of death, neither
clinicians nor surrogates discussed patients' preferences or values about
end-of-life decision making. In fewer than 12% of conferences did participants
address values of high importance to most patients, such as cognitive and
physical function.
This research is
very disturbing and clearly shows the need for more and better interventions to
ensure patients' values and preferences are addressed and integrated into
end-of-life decisions. The importance of selecting a surrogate who will truly
be your advocate can’t be emphasized enough.
In this video, Barbara Coombs Lee of the advocacy group Compassion &
Choices explains how, in some states, the terminally ill can specify what kind
of care they want through a Physician’s Order For Life Sustaining Treatment
(POLST). However, regardless of what is written, what actually results from
doctor-surrogate conferences must include patients’ wishes.
Frances Shani Parker, Author
Becoming Dead Right: A Hospice Volunteer
in Urban Nursing Homes is available in paperback and e-book
editions in America and other countries at online and offline booksellers.
Hospice and Nursing Homes Blog
