Researching Law Volume 30, Number 2 - Flipbook - Page 13
R ESEA RC HI N G L AW
family members, physicians, and
others. And a few have collected
snapshots of a meeting or a nal
decision. Some of the most powerful
work has been done by journalists
and documentary lmmakers
who eschew the scientic method
altogether. Typically cherry-picking
a handful of compelling stories, too
often about white middle-or uppermiddle-class families, their accounts
necessarily ignore the experience
of many. In appendix A, I elaborate
on these varied approaches and
describe their blinders, limitations,
and biases, which led me to look
elsewhere to understand how
surrogates navigate what could be
the end of another’s life.
This book offers a very different
window on how these end-of-life
trajectories take shape and change
course—by systematically observing
them, day after day, for more than two
years. Early each morning, a medical
social worker and/or I rushed off to a
neurological or medical intensive care
unit in a large urban Illinois teaching
hospital serving a very diverse
population of patients. Like ies on
the wall, we went along on critical
care rounds and then hung out in the
ICUs throughout the day to observe
spontaneous encounters as well as
formal meetings between health care
providers and families and friends of
patients who lacked decision-making
capacity. After the meetings ended,
we reconstructed (from memory)
transcripts of what was said and
documented characteristics of the
meetings and participants, social
dynamics, and emotional tone.
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We also examined patient medical
records. Appendix A provides greater
detail on our method and on its
strengths and limitations.
More than 2500 patients passed
through the two ICUs during the
research period, some of whom
lacked the capacity to make medical
decisions throughout their ICU
admission. We observed those
who spoke on their behalf. These
surrogate decision makers faced a
host of medical decisions, ranging
from whether to undertake surgery
or other medical procedures to
whether to withhold or withdraw
life support or donate the patient’s
organs. We observed not just the
big nal decisions documented by
so many of the other researchers
and storytellers, but also the
ongoing conversations and smaller
incremental decisions that shaped
and constrained the bigger choices
surrogates ultimately faced. In all,
we observed more than a thousand
encounters regarding 205 patients,
involving more than 700 of their
family and friends and almost 300
different health care providers.
These observations yield rich,
detailed accounts of the dialogue
between health care providers,
families, and others, day after
day, as diagnoses and prognoses
change; treatments succeed and
fail; new interventions become
necessary or are exhausted; new
medical teams rotate on and off
the service; signicant others
appear and disappear; and families’
understandings, goals, and
Loved ones hold
life and death
in their hands
because Americans’
constitutional rights
of autonomy and selfdetermination to make
decisions regarding
medical treatment are
so sacred that they are
extended by law to
proxies or surrogates
authorized to decide on
patients’ behalf when
the latter cannot.
expectations change. We observed
how participants make and remake
treatment decisions on behalf of
patients: the questions they ask, the
stories they tell, their statements
about the patient, the rationale or
justications they offer, the conicting
understandings or priorities they
negotiate, how they make sense of
technical or incomplete information
and mixed messages they receive,
how they balance their obligations to
the patient with their own self-interest
and the interests of others, how
nancial considerations or religious
and other values come into play, how
conicts erupt and are managed, the
role of advance directives and of law
in the deliberative process, and how
health care providers instigate, frame,
and shape the decision-making
process. In short, what and how did
participants decide? And why do
some decision makers authorize one
aggressive intervention after the next
while others do not—even on behalf
of patients with similar problems and
prospects?
In this book I tell their stories, drawing
on the most extensive observational
study of surrogate decision making
undertaken to date. The transcripts
that I will share throughout the book
take you to the private bedsides,
hallways, and conference rooms to
hear, in their own words, pulsing with
raw emotion, how physicians really
talk to families and how loved ones
respond, inquire, ignore, regale,
justify, plead, or disagree. Their
words will often be more instructive
than my own, and I encourage you to
spend time with them. Still, however
exhaustive the portrait I share,
this book does not—and cannot—
report on all of the many sites and
settings in which end-of-life decision
making unfolds. But it does open an
expansive window on that private
world and exposes an extremely
diverse collection of participants.
This book offers a very
different window on
how these end-of-life
trajectories take shape
and change course—
by systematically
observing them, day
after day, for more than
two years.
The window opens on the ICU itself,
where you will become familiar
with the rooms, technology, actors,
sights, sounds, rhythms, and
routines. Looking behind the privacy
curtains, you will meet health care
personnel, patients, and especially
their signicant others. Drawing on
examples from the experience of
hundreds of patients and families,
you will learn of the misfortunes that
brought patients to the ICU and the
worlds from which they traveled.
You will see the arrangements, if
any, that they made in advance to
prepare for medical decision making
on their behalf. You will get to know
the friends and family who visit or
maintain the occasional vigil at the
bedside, the complex tangled family
trees from which some travel, the
sometimes challenging or contentious
struggles to determine who gets to
speak on behalf of the patient, and
how decision makers come to understand their role and responsibilities.
Now familiar with the setting and the
actors, the book turns to the medical
decisions themselves that physicians
and signicant others negotiate.
You will hear physicians describe in
their own words the varied medical
interventions appropriate near life’s
end; the risks, benets, uncertainties,
and other considerations they
disclose as they discourage or seek
consent to these procedures; and
how loved ones respond and the ways
the dialogues unfold—with emotions,
misunderstandings, and conicts on
display. Considerations of prognosis—
the likelihood that the patient will
recover, become disabled, or die—
course through these conversations
and often play a signicant role in
how surrogates respond. The book
explores prognosis—how it is avoided,
framed, conveyed, even negotiated
with loved ones—and reveals the
silences, accuracy, consistency,
and biases to which prognosis is
often subject.
The central question of the book can
now be addressed. How do loved
ones and others make decisions on
the patient’s behalf? I present the
legal and bioethical norms about
surrogate decision making and the
difculties of following these norms
in the real world, even as so many
participants don’t even know that
they exist. One of those difculties
results from the impossibility of
truly knowing another’s wishes,
another from the conicts of interest
that arise at the bedside and are
inevitable when loved ones, who
have the most to gain or lose,
are entrusted with life-and-death
decisions. Yet another reects the
cognitive biases that compromise the
judgments of physicians and decision
makers alike.
Given that decision-making norms are
often unknown or difcult to follow,
I reveal how surrogates and other
friends and family improvise and the
decision-making criteria they fashion,
sometimes in collaboration with
health care providers, sometimes
in opposition to them. Again in
their own words, I show how loved
ones struggle with and justify the
excruciating medical decisions they
are called on to make on behalf
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