Researching Law Volume 30, Number 2 - Flipbook - Page 14
R ESEA RC HI N G L AW
of the patient—from standing in
the patient’s shoes or maximizing
what’s best for the decision maker
(as did the two families who opened
this chapter) to avoiding decisions
altogether (whether because they are
in denial or because they are waiting
for the patient to regain the ability to
decide or for God to do so), and much
more. I uncover the characteristics of
patients and families that gravitate
to one decision-making strategy or
another and what difference choice
of strategy makes in the likelihood
the patient will survive, the length of
hospitalization and likely suffering, or
the emotional distress experienced by
loved ones. I also provide systematic
evidence that advance directives—
living wills and health care proxies—
touted to enhance patients’ autonomy
and to empower their decision
makers and ease their burden make
almost no difference in the two ICUs.
So what does or could make a
difference? The book concludes
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?
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with lessons learned and proposes
steps that readers—whether wouldbe patients, would-be surrogates
or family members, health care
providers, health care institutions,
legal professionals, or policy makers—
might undertake before it is “too late”
and even after.
Is This for Me?
If you are still reading this, you may
be questioning its relevance. After
all, like a signicant majority of
Americans, you hope to die at home—
not in an intensive care unit or even
a hospital. But, if you are like more
than two-thirds of Americans, your life
will not end at home. Most Americans
will spend time in a hospital near
life’s end. Almost three-quarters of
Medicare enrollees are hospitalized
at least once (on average, for eight
days) in the last six months of life, 40
percent of enrollees in an intensive
care unit. One in ve Americans will
die in a hospital and one in seven in
an ICU.
Intensive care units are not only
places to die, of course. Misfortunes
throughout the life course often
require critical care. Many ICU
patients are neither elderly nor
chronically sick. Half of all the
patients admitted to the two ICUs
were fty-seven years old or younger
(with average life expectancies of
another twenty-ve years). For 43
percent of the patients observed,
their visit to the ICU came out of the
blue. Like many of you, these unlucky
patients did not foresee themselves
conned to an ICU either.
Moreover, even if you are determined
or fortunate enough to escape
intensive care throughout your life,
this may not be true of those you love.
Many of you will spend time in ICUs,
not on beds or gurneys, but in waiting
rooms and at bedsides, charged with
excruciating life-and-death decisions
on behalf of another or supporting,
challenging, or bearing witness to
those who are. Given the prevalence
of visits to intensive care units, it is
almost inevitable that each of us will
eventually nd ourselves at the ICU
bedside of a loved one. That day may
not be too far off, given the relatively
young ICU population. Research has
consistently found that choosing life
or death for another is one of the
most difcult decisions of a lifetime
and the source of guilt or remorse
that can haunt families decades later.
This book foreshadows what some of
you may encounter at those bedsides
as patient, surrogate, or witness and
offers an opportunity to question,
reect, and converse with your
friends and family before it is too late.
Perhaps the most generous nal gift
one can leave to a loved one is that of
information, reassurance, and trust
that may help avoid the helplessness,
paralysis, guilt, or self-doubt that
plague so many families after the
patient loses the ability to speak.
Lessons from the ICUs are especially
relevant to those of you who serve,
counsel, or care for people as they
near life’s end and their families—
physicians, nurses, chaplains, social
workers—as well as those training
to do so. Some of you may feel that
you already know what happens at
the ICU bedside. But this knowledge
comes from the idiosyncratic prism
of your own experience: the kinds
of patients or clients you serve
and the length and depth of these
relationships; the medical problems,
prognoses, and treatment decisions
unique to your specialty; your own
bedside manner; your personal
values; and the ways that you interact
with patients and their families,
present information, offer options
or support, and provide or avoid
advice. You may not realize just
how different these prisms are for
some of your colleagues, especially
those who serve a highly diverse
population of patients—differences
that may shape the understandings
(and misunderstandings), priorities,
challenges, crises, and options faced
by the patients, families, and clients
that you inherit from or share with
them. Drawing on observations of
almost three hundred health care
providers, this book takes you along
on their rounds and into their ofces
and conference rooms as they
negotiate life-and-death decisions
with those who speak for their
patients or clients. Helping families
negotiate the end of life is rarely
the favorite part of a health care
provider’s job description. This book
shows how others undertake these
responsibilities and provides new
insight into what families are going
through.
of crisis, this book will provide a
cautionary tale about the efcacy
of legal solutions to the challenges
near life’s end and some suggestions
about how you might play a more
supportive role.
Finally, scholars, bioethicists, and
those who work on health care
policy are well aware that surrogates
represent a critical black box in
understanding outcomes at the end
of life and efforts to change the
American way of death. If seven in
ten Americans who need medical
decisions in the nal days of life lack
the capacity to make these decisions,
surrogates play an enormous role
in controlling the trajectories of
life’s end—decisions made; the
alignment or misalignment of patient
preferences and treatment; resources
expended, conserved, or squandered;
and pain and suffering mitgated or
exacerbated. This book shares rich
new data from an extremely diverse
population that help shine a light into
that black box.
In short, whether providing, receiving,
directing, bearing witness, or seeking
to improve intensive care, this book is
or will someday be about you.
If seven in ten
Americans who need
medical decisions
in the nal days of
life lack the capacity
to make these
decisions, surrogates
play an enormous
role in controlling
the trajectories of
life’s end—decisions
made; the alignment
or misalignment of
patient preferences
and treatment;
resources expended,
conserved, or
squandered; and pain
and suffering mitgated
or exacerbated. This
book shares rich new
data from an extremely
diverse population that
help shine a light into
that black box.
Reprinted with permission from
Speaking for the Dying by Susan
Shapiro, © 2019 by the University of
Chicago Press. All rights reserved.
For those of you who provide legal
counsel, helping clients anticipate
the challenges of inrmity or death,
drafting documents to protect their
interests, or responding at times
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