Researching Law Volume 30, Number 2 - Flipbook - Page 3
R ESEA RC HI N G L AW
VOL 3 0 | N O 2 | FALL 2 019
ABF Scholar Sheds a Light on
Life-and-Death Decisions in Intensive Care
Improving the understanding of law as it relates to everyday life is vital to
the research mission of the American Bar Foundation (ABF). In a new book,
Speaking for the Dying: Life-and-Death Decisions in Intensive Care, ABF
Research Professor Susan P. Shapiro uncovers the complex decision-making
process and the role of law in end-of-life care. The book draws on the most
extensive observational study to date of how loved ones navigate life-and-death
decisions for patients who are unable to speak for themselves.
Seven in ten Americans over the
age of sixty who require medical
decisions in the final days of
their lives lack the capacity to
make them. For many people,
the most significant life-anddeath decisions of their lives
will be made by someone else.
Loved ones act as surrogate
decision makers, negotiating
medical decisions on a patient’s
behalf when the patient lacks
decision-making capacity.
These decision makers will
decide whether patients live
or die, whether they receive
medical interventions seeking
cure or comfort, and whether
they die in a hospital or at
home. They will determine
whether wishes are honored
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and choose between fidelity
to the patients’ interests and
what is best for themselves or
others. Yet despite their critical
role, little is known about how
surrogates make decisions for
their loved ones.
Speaking for the Dying draws
on daily observations for over
two years in two intensive
care units (ICUs) in a large
urban hospital. Shapiro and
a medical social worker
studied approximately 1,000
interactions between doctors,
surrogate decision makers,
and families of patients
brought into the ICU. These
observations document how
physicians communicate with
family members about life-and-
death choices and how families
respond and make decisions
about care for their loved ones.
The book examines the medical
decision-making process from
all angles. It reveals how
decision makers are selected,
the interventions they weigh
in on, the information they
seek and evaluate, the values
Seven in ten Americans
over the age of sixty
who require medical
decisions in the final
days of their lives lack
the capacity to make
them.
and memories they draw on,
and the criteria they consider.
It also explores the outcomes
they choose, the conflicts they
become embroiled in, the
challenges they face, and the
role of health care providers in
this process.
In her work as a sociologist,
Shapiro has focused on
the intersection of law and
asymmetric relationships of
trust in which an agent acts
on behalf of a more vulnerable
other. In her past work, she
examined trust in other areas
such as the stock market, the
news media, and conflict of
interest in legal practice. It
was her interest in these trust
relationships that led her to the
ICU to study how surrogates
act as trustees on behalf of
vulnerable patients without
cognitive capacity.
Speaking for the Dying is a
culmination of Shapiro’s rich
ethnographic research on this
subject, which she credits to
the intellectual opportunities
afforded by the ABF. “This sort
of pathbreaking and intensive
research, conducted from
dawn to the wee hours of the
night over several years, is only
possible at a place like the ABF,”
notes Shapiro. “I am grateful
to work at such a unique
place that permits the sort of
commitment required to pull
this off.”
The Limitations of
Advance Directives
Americans have been
encouraged for decades to
prepare advance directives.
These legal documents state
treatment preferences or
specify a person to make
health care decisions should
one lose capacity in the future.
Advocates maintain that
advance directives will help
protect patients and their loved
ones when patients can no
longer speak for themselves.
However, Shapiro’s findings
cast light on the limitations of
advance directives.
In Shapiro’s observations, not
quite half of the ICU patients
without capacity reportedly had
completed advance directives.
But in examining more than
1,000 medical discussions
on their behalf, she found
that families and health care
providers rarely asked about
or described the treatment
preferences expressed in the
document.
For almost half of the patients
with advance directives in the
hospital record—and whose
treatment preferences were
For almost half of
the patients with
advance directives in
the hospital record—
and whose treatment
preferences were
known—Shapiro found
that the directives
made no discernable
difference in helping
ensure that decisions
were consistent with
these preferences.
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