Baylor University Medical Center Proceedings October 2017 - 473

Invited Commentary
Changing the conversation at the end of life: How the language we use
impacts surrogates' decision-making burden
Life is pleasant. Death is peaceful. It's the transition that's
troublesome. -Isaac Asimov (1920-1992)

While death is an indisputable fact of life, we seem to have
difficulty acknowledging this fact amid a rapidly evolving and
cure-focused health care system. We hope each of us will experience a Lazarus-like raising from serious illness and return
to a normal life. Likewise, physicians are raised in a culture of
treatment, focused on cure at all cost, and consider death a
failure to be avoided. Certainly, most of us want to be cured
when it is possible, but how to care when cure is not possible
and treatment becomes harmful is a neglected conversation.
Two similar but divergent scenes play out in "Viaticum,"
by Dr. Fine and Dr. Michel (1). One tells the story of what
often happens at the end of life; the other a story of what should
happen at the end of life. While physicians are often aware of
the nonbeneficence of certain treatments at the end of life, they
may lack the training and skills needed to engage in difficult
conversations. Several studies have shown people are aware of
their own mortality and, when asked, can identify specific values
they want honored at the end of life. They want to be at home,
to be mentally aware, to be at peace with God, to be pain-free,
and to avoid burdening their family. Interestingly, these preferences have remained stable in the published literature for about
20 years (2-4). Despite these expressed preferences, people also
recognize they are unlikely to die at home and, when asked, cited
an institution as the most likely place they expect to die (4).
This discrepancy between what people hope for at the end of life
and what usually happens is clearly illustrated in "Viaticum."
In the first scene of "Viaticum," Dr. Michel calls his patient's
family to confirm he is doing the "right thing" for their loved
one. His hesitation to pursue aggressive medical intervention
is challenged after he hears the daughter say, "Do whatever
you need to do to save her," even after he explains the invasive
procedure and then confirms the patient has dementia and is
on hospice care. This interaction is all too familiar to health
care professionals: the provider knows the procedure may fix
an immediate problem but won't improve overall quality of
life, yet the family wants the procedure, perhaps driven by the
simple fact it was offered.
Contrast this scenario with scene 2, where Dr. Michel takes
a step back before discussing what a procedure would entail
and, instead, says, "Let me start by sharing my understanding
of just how seriously ill your mother is and how near the end
she is in her life's journey." This statement prepares the daughter
for what will come next: breaking serious news and creating a
Proc (Bayl Univ Med Cent) 2017;30(4):473-474

plan of care that takes both her dementia and advanced cardiac disease into account. This second scenario includes more
conversation about what care will be helpful in this situation
and what treatment options would cause harm; it includes
the words "may be dying," and it places the physician in the
position of making a recommendation rather than asking the
family to make a choice.
The conversation illustrated in scene 2 in "Viaticum" represents the ideal for care at the end of life. In practice, this may
not occur as frequently as it should, but it certainly is not due
to a lack of evidence. Numerous studies in the past 20 years
have focused on evaluating and improving care at the end of
life. The lack of benefit of aggressive treatments in the final
months of life has been well documented, and avoiding nonbeneficial interventions is supported by expert guidelines created
decades ago. For example, the American Medical Association's
Council on Ethical and Judicial Affairs published guidelines
in 1991 for the appropriate use of do-not-resuscitate orders,
which remain a guiding statement more than 25 years later.
The document describes nonbeneficial treatment as that which
will not restore cardiorespiratory function or won't achieve a
patient's goals (5). Read that last phrase again: won't achieve a
patient's goals. Unfortunately, a patient's goals and values are
rarely elicited before treatment options are offered and, if they
are, they are poorly documented. The lack of documentation
also means this information is almost never available to guide
care in an emergency.
The second key principle illustrated in "Viaticum" is the
burden of decision-making that is placed on surrogates. In the
first scene after Dr. Michel outlines what procedure is needed,
he says, "I wanted to make sure that she and you, . . . the family
would want that." The family is now burdened with accepting
or rejecting the proposed procedure based on their knowledge
of medicine and their loved one who "seemed fine" earlier in
the day.
There are two aspects of this situation worth exploring. The
first is that physicians should use their expertise to make a recommendation. It is clear Dr. Michel is looking for any reason
to avoid this procedure. If it was deemed nonbeneficial in his
medical opinion, then the procedure should not be recommended (6). A 2012 study investigating patient preferences
for medical decision-making reported that 97% of participants
wanted their doctors to offer them choices and consider their
opinions. But when it came time to decide, two-thirds of participants preferred that the doctor make the final decision (7). The
second notable aspect is, without an expert recommendation,
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