Researching Law Volume 30, Number 2 - Flipbook - Page 5
R ESEA RC HI N G L AW
...scripted instructions
and boilerplate
advance-directive
documents drafted
when patients are
healthy rarely provide
guidance for the
unexpected, nuanced,
and equivocal choices
their surrogates often
encounter.
known—Shapiro found that the
directives made no discernable
difference in helping ensure
that decisions were consistent
with these preferences.
Moreover, she found that
for every advance directive
that seemingly helped honor
patient wishes—by providing
guidance, clarification, or
closure; fostering consensus;
or assuaging guilt—another
directive seemingly failed to
do so or even undermined the
patient’s wishes. Directives
often failed because their
instructions were ignored or
misunderstood, or because
surrogates insisted on following
their own wishes or stated that
it was their decision whether
to honor the patient’s wishes.
Other directives failed because
they did not convey the patient’s
wishes, whether because they
were completed by someone
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else, used jargon that the patient
misunderstood, or had not been
revised to reflect the patient’s
change of heart. And Shapiro
observed other surrogates
hiding behind a document and
refusing to weigh in when the
document provided insufficient
guidance.
In examining data from the
observed encounters, Shapiro
found little difference in how
decision makers armed with
advance directives and those
without them behaved. Across
almost three dozen aspects of
the decision-making process,
outcomes, or impacts, only
one significant difference could
be found. Family members
of patients with directives
were more likely to initiate
discussions of goals of care,
although they were no more
likely to have them. Aside
from that, treatment decisions
for patients with and without
directives were not different,
were made no faster, weighed
similar criteria, and appeared
to be no less burdensome for
families.
Making Treatment
Decisions
It is extraordinarily difficult
for healthy individuals to
anticipate the medical crisis
that might land them in a
hospital one day and the
difficult choices their loved
ones might face. They may also
not realize that these decisions
may be challenged by vague,
ambiguous, or inconclusive
prognostic information that
surrogates receive or by
mixed messages delivered by
different specialists or teams of
physicians. As a result, scripted
instructions and boilerplate
advance-directive documents
drafted when patients are
healthy rarely provide guidance
for the unexpected, nuanced,
and equivocal choices their
surrogates often encounter.
Like the majority of patients
with no scripted directives,
most loved ones responded
to the myriad decisions they
faced with improvisation.
Across almost three
dozen aspects of
the decision-making
process, outcomes,
or impacts, only one
significant difference
could be found. Family
members of patients
with directives were
more likely to initiate
discussions of goals
of care, although they
were no more likely to
have them.
Many reprised and followed
the patient’s written or verbal
instructions, sometimes
expressed years or decades
earlier. Others delayed decisions
in the hope that patients would
regain capacity in the future,
and either be able to make
decisions themselves or provide
guidance. Many stood in the
patient’s shoes to try to decide
as the patient would decide if
he or she knew the relevant
facts. Others tried to maximize
the patient’s welfare and
advance his or her well-being.
Some left the outcome up to a
higher power. Others focused
on their own interests and
desires. Finally, some opted out
of making any active decisions
because they were in denial
about the patient’s condition or
distrustful of physicians.
Loved ones sometimes
followed a single decisionmaking criterion—or what
Shapiro called a “trajectory”—
and other times navigated
several trajectories either
simultaneously or moving from
one to another over the course
of the ICU admission. Some of
these trajectories were heavily
traveled, while others were less
so. Physicians often played a
role in framing the decisionmaking process or encouraging
surrogates to broaden or
reconsider their decisionmaking criteria.
Choosing an Effective
Surrogate Decision
Maker
The majority of ICU patients in
Shapiro’s study, like most adults
in general, had not designated
a surrogate decision maker.
However, decision makers—
whether chosen by the patient
or by legal rules when patients
made no choice—were found to
play an enormous role in setting
the course of care, even if the
patient’s treatment preferences
were expressed or documented.
Shapiro’s findings underscore
that a would-be patient is best
served by carefully selecting and
documenting well in advance
a surrogate decision maker to
entrust with making life-ordeath decisions on his or her
behalf.
Effective surrogate decision
makers knew the patient
well and had communicated
frequently with them in recent
years. They understood the
patient’s values, preferences,
and fears. They were also good
listeners and communicators,
intelligent, had an open
mind, and were decisive. And
they were able to process
complicated, incomplete,
and sometimes conflicting
information, and could see the
larger picture.
Shapiro’s findings
underscore that a
would-be patient
is best served by
carefully selecting and
documenting well in
advance a surrogate
decision maker to
entrust with making lifeor-death decisions on
his or her behalf.
The most effective surrogates
were good advocates and
engaged health care providers
to gather information and ask
difficult questions. They were
willing to devote considerable
time to visit the hospital
repeatedly, observe the patient,
and meet with varied teams of
physicians. They knew how to
stand up to doctors and family
members when necessary, but
also how to build consensus and
inspire trust. They were sensitive
about separating their interests
from those of the patient.
The selection of a decision
maker to speak on a patient’s
behalf should not be taken
lightly. Shapiro’s observations
show that decision makers
who lacked the attributes of
effective surrogates risked
relying on insufficient data
or misunderstanding it. This
could lead them to make
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