Researching Law Volume 30, Number 2 - Flipbook - Page 11
R ESEA RC HI N G L AW
the patient alive while they locate
another specialist or institution that
can perform a lifesaving intervention,
a miracle. They will not give up until
they nd someone—whether at the
Mayo Clinic or in London—able to do
the intervention of which physicians
in this hospital are incapable. They
bring a lawyer to the hospital to
ensure that physicians do not remove
the patient’s life support before they
have an opportunity to transfer the
patient elsewhere. Dubious that the
family can arrange a transfer, the
medical team nonetheless agrees
to give them time to try to do so,
although nurses and other physicians
privately complain to one another
about their discomfort and moral
distress in treating a dead patient.
The next day, to the amazement of
the health care team, an outside
neurosurgeon agrees to treat the
patient, and a local facility agrees to
a transfer. (Just hours earlier an ICU
nurse had condently declared to his
colleagues that, if any facility agreed
to take a dead patient, he would quit
his job.)
ICU doctors prepare the brain-dead
patient, his organs rapidly failing,
for the risky ambulance ride to the
new facility. A few days later, a death
notice for the patient appears in the
local newspaper.
Many of you probably cannot imagine
yourself standing in the shoes of
a member of either of these two
families—deciding as they decided,
as quickly or resolutely, or for the
reasons they expressed. Some of you
may not even realize how very likely
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it is that someday you too will stand
at the bedside of a loved one facing
wrenching life-and-death decisions on
his or her behalf. And perhaps others
of you are horried to think that what
happened to one or both of these
patients could happen to you.
You are in good company. This book
shares the very different stories of
roughly two hundred other intensive
care unit patients and how their
families and friends negotiated
medical decisions on their behalf.
Like the rst patient, many had
preexisting medical problems, some
of very long standing. Some patients
were in the ICU for an elective
procedure or second opinion; a
few ew across the country when
local physicians offered little hope.
Others experienced complications—
infections, respiratory problems,
cardiac arrests, strokes—from
unrelated medical procedures performed elsewhere in this or another
hospital. And, like the second patient,
for many the symptoms came out
of the blue. They were at home, at
work, in a public place, or engaged in
sports when they collapsed, suffered
a seizure or the worst headache of
their life, or exhibited slurred speech,
weakness on one side, or confusion.
And others were transported to the
ICU after a fall, accident, or assault.
The unfortunate patients in
these stories are current or
former doctors, nurses, lawyers,
teachers, bus drivers, farmers,
bookkeepers, construction workers,
factory workers, business owners,
musicians, performers, security
guards, architects, salespersons,
homemakers, honor students,
and likely drug dealers. They are
celebrities and street people. They
are young and old, male, female, and
transgendered, rich and poor, gay
and straight, someone’s parent and
another’s child. They are black and
white, Hispanic and Middle Eastern,
East and South Asian, Protestant
and Catholic, Jewish and Muslim,
Jehovah’s Witness and Hmong,
evangelicals and agnostics. Some live
blocks and others thousands of miles
away. Some are attended by roundthe-clock vigils of family and friends;
others languish alone in their room,
day after day, without a single visitor.
The patients are as diverse—literally—
as the American census. Yet what
they have in common is so much
more fundamental than mere
demographics or the circumstances
of their visit. Whether comatose,
nonresponsive, unconscious,
sedated, or suffering cognitive decits
or dementia, they cannot speak for
themselves. Denizens of intensive
care units offering the highest-tech
interventions that modern medicine
has invented, they lack the capacity
to direct their care—to embrace
or refuse surgeries, procedures,
medical devices, medications, or
life-sustaining treatments that might
cure their disease or relieve their
symptoms, extend their lives or their
suffering, restore their quality of life
or destroy it, cheat death or sentence
them to a fate worse than death. The
biggest life-and-death decisions of
their lives—literally—had to be made
by someone else.
Hospital records will tell you that
more than half didn’t make it out
of the hospital alive—nine in ten of
them, because someone directed
physicians to stop aggressive
measures. They will document
what procedures were performed
or tally the many millions of dollars
collectively paid for that care. This
book will tell a different story. I look
beyond the hospital bed and gaggle
of white coats administering to
unresponsive bodies secured with a
tangle of lines, tubes, and monitors—
activities methodically documented in
the medical record and in many other
books and articles—to the anxious
faces of loved ones hovering nearby,
and to waiting rooms and conference
rooms and hallways. I tell the stories
of these others, without the white
coats, who also hold life and death
in their hands, however reluctantly.
It is easy to forget, in the drama of
saving lives, that their stories are
often the most decisive. After all, for
every patient who died despite their
doctors’ best efforts, nine others did
so at the behest of their loved ones.
Loved ones hold life and death in
their hands because Americans’
constitutional rights of autonomy and
self-determination 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. Intensive care
units represent ground zero for
surrogate medical decision making
because of the gravity of the illnesses
and injuries they attract and the
aggressive interventions they offer.
Two studies found, for example, that
because so few ICU patients have
decision-making capacity, 96–97
percent of decisions to withhold or
withdraw life support were made by
someone else. Although impaired
capacity may be commonplace
in intensive care units, it is not
uncommon elsewhere, especially
near life’s end. One study found that
70 percent of Americans aged sixty
or over requiring decisions about
care and treatment in the “nal days
of life” lack capacity to make these
decisions. Because these numbers
are so large, most of us will someday
be called on to act as a health care
surrogate on behalf of another and
perhaps need one ourselves.
These surrogates who make
treatment decisions on patients’
behalf often determine the
trajectories of life’s end: whether
patients go to a health care institution
at all and what kind; the level of risk
or suffering to assume in the hope
of a cure; the appropriate tipping
point between length of life and
quality of life; whether they receive
routine treatment, cutting-edge
interventions, aggressive care, life
support, or hospice care, and for how
long; whether they receive comfort
care or heroic measures in their last
hours; whether they die at home or
in a hospital; the disposition of their
bodies (organ donation, autopsy,
cremation, etc.); and whether their
wishes (if they ever expressed any)
are honored, forgotten, or betrayed.
And they choose between delity to
patient interests and what is best
for themselves or others. Surrogates
Many of you probably
cannot imagine
yourself standing in
the shoes of a member
of either of these two
families—deciding as
they decided, as quickly
or resolutely, or for the
reasons they expressed.
Some of you may not
even realize how very
likely it is that someday
you too will stand at
the bedside of a loved
one facing wrenching
life-and-death decisions
on his or her behalf.
also control many of the expenditures
on health care near the end of life,
much of it, studies nd, for unwanted
treatment.
Yet despite their critical role for
so many near life’s end, we know
remarkably little about these
surrogates, the decision-making
process they follow, the choices they
make, and the challenges they face.
Other researchers have employed
various methods to answer some
of these questions. Many have
presented hypothetical scenarios to
healthy would-be patients and wouldbe surrogate decision makers. Some
have abstracted data from medical
records. Others have conducted
retrospective interviews or surveys of
varied informants—decision makers,
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