~ S P E C I A L ~ F E A T U R E ~
How We Die in America
an excerpt from the new book
by William Colby
Reclaiming our Right to Die in America
If you're like most people, you want to live as long as
possible, then die quickly and painlessly at home. That's
probably not going to happen. Today, 80% of Americans die
in an institution. In most cases, they don't die a
"natural" death -- someone decides to let them go. Every
day, 7000 Americans die by decision. This book is about who
gets to make that decision, when, and how.
The article is written by William Colby, the family
attorney in the Nancy Cruzan case -- the first right-to-die
case heard by the U.S. Supreme Court. The book examines
three landmark cases and what they imply about how we are
going to die in the future:
- The 1976 case of Karen Ann Quinlan, whose parents had to
go to court to have their daughter removed from an
- The 1990 case of Nancy Cruzan, injured in an automobile
accident, whose family fought for three years to have her
feeding tube removed.
- The 2005 case of Terri Schiavo, who lived in a permanent
vegetative state for 15 years before courts agreed to allow
her to die. Colby was stirred to write UNPLUGGED by the
Terri Schiavo drama.
In the excerpt, below, Colby illustrates the contrast
between how we think we're going to die and how we're
actually likely to check out. For example, though a quarter
of Americans have a living will or medical directive, less
than 5% of patients have a copy in their charts. Not that a
living will does much good: two-thirds of physicians say
they ignore living wills that contradict their own
judgment. Isn't that comforting!
More information about the book, UNPLUGGED, and author
William Colby, follows the excerpt. Thanks for considering
How We Die in America
by William Colby
Often the written law doesn't end up mattering much in
decision making around our dying and death. Medical
providers all have stories about living wills or health
care powers of attorney not working as intended. A father
only makes one copy of his living will, which he keeps in
his safe deposit box at the bank, but he's now in a coma,
and no one else has access to that box. Or a living will,
patterned after a state law passed years ago, speaks mainly
of life support and terminal condition. The doctor tells
the family that the living will does not help in answering
whether their now frail and increasingly demented father
would want aggressive antibiotic treatment for pneumonia.
Or, very commonly, a clear power of attorney or living will
may exist, but the adult children are in conflict about
what is "right" for mom, as they've been in conflict on
most topics for many years. Medical providers faced with
warring relatives usually find that the piece of paper
cannot bring resolution to either the broken relationships
or the "war" over mom's care.
During such times of difficult decision making, medical
providers basically look for help wherever they can find
it. They are trying to do what's right and don't have a lot
of time or energy left to worry about the law. At a talk I
gave in Chicago in the spring of 2005, a lawyer stood
during the question and answer period and said he'd enjoyed
the talk but worried about how my general advice might be
interpreted for his state.
"In Illinois, for a living will to be effective, the
language about refusing nutrition and hydration, by
statute, must be in all capital letters," he said. We had a
good discussion about the constitutional right to make
decisions, which I believe would extend to the right to
draft a reliable living will in your own words (and even,
in my opinion, to exercise that right simply by expressing
your wishes orally). Then we moved on. Afterward a nurse
came up and said quietly, "I didn't want to contradict the
lawyer, but we take anything at our hospice; forms they get
off the Internet, handwritten living wills, even what
family members tell us they said. We're just trying to get
an idea of what the patient would want."
No doubt medical providers look for help wherever they can
find it because the questions are complicated. As
technology has proliferated, the questions related to its
proper use, quite logically, have grown more complex.
Judges will decide disputes that technology creates, like
the Quinlan, Cruzan, and Schiavo cases, and legislators
will pass laws regulating living wills and other documents.
But the laws always will have a limited ability to guide
families in deciding what is "right" when they face medical
decisions for a seriously-ill loved one.
Each spring, lawyers and judges from Kansas City gather
together in an Ozark mountain resort for a weekend of
meetings and fellowship. I remember sitting at one of these
meetings in the early 1990s on an outdoor terrace with a
breathtaking view of a white-capped Ozark mountain lake far
below, listening to a group of much more senior lawyers
talk about when they thought the practice of law had "gone
wrong." The obvious thread tying their complaints together
was technology. The complaints moved back through time:
computers that allowed cutting and pasting of documents had
caused a flood of paper; all of it still had to be read.
No, it started earlier, another said, with the IBM
Selectric typewriter; no, Mag card machines; no,
They were laughing, nostalgic about a simpler time. The
oldest one there had been sipping his scotch and just
listening, and then he cleared his throat. "You guys want
to know where it went wrong? And I'm serious. Air
conditioning," he said. "Before they remodeled the
courthouse in, when was it, 1965, 1960? Anyway, it was too
hot to do much in the summer, so everybody took it easy.
Summer had a nice relaxing pace. We'd come in some days,
others we'd play some golf. The damn air conditioning
ruined the proactive of law." They all sat there quietly,
apparently thinking about the dark side of air
It would be interesting to reconvene this group now in
2005, twelve or so years later, and see if e-mail, the
Internet, BlackBerry, document scanning, camera cell
phones, and law books on CD had delivered to these men
their technological promise of greater efficiency and more
time with family -- or if they have, perversely, tightened
the technological bind of these lawyers to their offices.
We live in a time when it's nearly impossibly to fathom how
deeply technology affects every part of our world,
including medicine. This same discussion among the lawyers
happens with doctors, too. A neurosurgeon who testified as
an expert for me in the Busalacchi right-to-die case in St.
Louis told me that there once was a time when he had a
decent handle on most of medicine, not just neurology. By
1992 (the time of that trial) it had grown so complex that
he could not even keep up with the reading of the two
leading journals in his neurosurgical subspecialty, let
alone the broader field of neurology -- or even broader,
Dr. Lown was one doctor in Boston in November of 1959. Out
of options, he came up with a radical idea when confronted
with a dying heart patient: shock the heart of that
conscious patient from the outside. Today, an entire
industry exists of doctors and technicians and
manufacturers of devices and drugs who carry on the work
that began one cold morning in Boston at the bedside of Mr.
C. Cardiologists receive specialized training to become
electrophysiologists and arrythmologists, spending their
days focused solely on diagnosis and treatment of heart
rhythm disorders. Specialized technicians called
echocardiographers use high-frequency sound waves
(ultrasound) to view all four chambers of the heart, the
heart valves, the great blood vessels entering and leaving
the heart, as well as the sack around the heart.
Angioplastic surgeons have learned noninvasive procedures
using long probes and balloons to repair damaged hearts.
Pharmaceutical companies invent new heart drugs constantly,
such as Coreg and Tiazac and Dilacor. Medical device
companies life Medtronic develop new devices, like tiny
ICD's, or implantable cardioverter-defibrillators (first
approved by the FDA in 1985). These devices- known as
pacemakers- are placed surgically just below the skin near
the collarbone. Tiny lead wires are threaded through a vein
into the heart, and a computer chip in the ICD device tells
it when to deliver the electrical shock to control a heart
that is beating too fast, and to correct the dreaded V-fib.
(At about the time Dr. Lown was shocking Mr.C in November
of 1959, Medtronic was a fledgling company founded by two
brothers-in-law in Minneapolis -- a former electrical
engineering student and a former lumberyard worker- who
operated out of a garage, repairing equipment like
centrifuges. Medtronic today operations from about 250
manufacturing, sales and research facilities around the
world). Walking down airport hallways across the country
today, passengers see compact defibrillator paddles mounted
on the wall, and airport personnel are trained in their
use. The technology to save lives is now available in
malls, high school gyms, churches, and many other public
Cardiologists aren't the only medical professionals who
have benefited from these technological advances;
physicians specializing in other organs including the
brain, skin, liver, kidneys, intestines, lymph nodes,
uterus, pancreas, bladder, esophagus, intestines, lungs,
and so on have as well. Doctors today can treat a sick body
from head to toe, part by part, with tools that were pure
science fiction when Dr. Plum was naming the persistent
vegetative state in 1972.
Advances in medical science have helped to create
remarkable improvements in health and survival. In 1900 the
average life expectancy was 41 years of age in the United
States; by 2000 it had risen to an astounding 77 years,
thus nearly doubling in one hundred years. Economist Julian
Simon has described this development as "the greatest
single achievement in history." Today the elderly in the
United States are getting knees replaced, hearts
transplanted, arteries ballooned open, and not only living
to tell about it, but also thriving. How could we not
Our doctors are equally subject to technology's allure.
They learn in medical school to assess, treat, and cure.
They then move into a hospital culture where a death, even
among the aged, is seen as a failing. The young Dr. Lown in
1959 plied the silver paddles on the chest of a living
human for the first time, and saw a miracle; a racing, out-
of-control heart instantly returned to a normal heartbeat.
The young Dr. Potter in 1963 compressed a chest and saved a
hardware store owner, and the whole town knew it. Their
tools were unbelievably primitive compared to the arsenal
available to a young doctor today, but the miracles are
equally wonderful. How could we deny today's doctor such
joy? Or today's patient? Why in the world would we want to?
In truth, we don't want to, and we shouldn't want to. We
want the technology, and we want the cure. When surveyed,
the majority of us say that when our dying comes, we hope
to be at home, free from pain, surrounded by loved ones,
and not hooked up to machines. In the abstract, that's
likely true. We also very much want to be hooked up to
those machines right up to the very moment when the doctor
is sure that those miraculous tools can't fix us. Trying to
find that exact line is no easy business.
Often during the public wrangling over Terri Schiavo's fate
I heard commentators or advocates argue that "we should let
nature take its course." Interestingly, people from either
side of the divide attempted to claim this ground to
support their version of what was "right" for Terri
Schiavo: leave the tube in, or take the tube out and let
nature take its course. The dispute makes the point -- the
time of nature taking its course for the seriously ill in
America is over.
It is frequently stated in the medical and social science
literature that dying once took place in the home. It was
common, and the "death bed" was familiar furniture.
Infection spread quickly, medicine had no real tools to
fight it, and death inevitably came. By contrast, today
most dying (around 80 percent by the reckoning of many
groups) takes place in institutions, either a hospital or
nursing home. Over a course of years of living with and
battling a chronic illness, dozens of decisions are made
about the use of medicines and technologies to beat back an
illness. Like a river altered for commerce by locks, dams,
and channel dredging, nature has no course in this
technological world. The path is chosen and altered. But
the river still ends up in the sea.
Most of the questions about dying and medical treatment
today do not involve young, recently healthy patients like
Karen Ann Quinlan, Nancy Cruzan or Terri Schiavo; they
involve the elderly. But the ethical issues are in many
ways the same. Dr. Joanne Lynn served as one of two
assistant directors on the first President's Commission in
the late 1970s into the early 1980s, and she has written
and worked to improve end-of-life care ever since. She and
I sat together around the PBS roundtable in December of
1989 following the oral argument in Cruzan. That same year
she began work as codirector of the largest scientific
study of the dying every done in this country, the SUPPORT
stud. Dr. Lynn has long been a passionate voice in a world
of advancing medical complexity.
I heard Joanne Lynn speak in November of 2005 at a briefing
for legislative staffers on Capitol Hill in Washington. She
started her talk with this bit of a party trick for the
audience: "Let's say that everyone in this room can choose
how you will die. How many of you would pick cancer?" Three
hands went up, including mine. "How about heart and lung
disease?" A few more hands. "Then the rest of you have just
chosen to die of old age and frailty, your body and mind
dwindling over a period of several years." She laughed
then, and less confident laughter made its way around the
room to join her.
Lynn just described the three major paths to modern dying.
About 2.5 million people die each year in the United
States, and a large percentage of those deaths, about 80
percent, follow three basic paths. The first group (the one
I chose), includes about 20 percent of Americans, or
400,000 people annually. Cancer patients typically die
after a long period of living with a fatal illness,
sometimes years, during which they were able to stay fully,
or mostly, engaged in life during that illness. Death
usually comes with a few weeks or months of rapid decline
at the end.
The second group includes about 25 percent of the dying in
America or 525,000 annual deaths. With chronic heart
failure and emphysema, decline is slower and elapses over a
longer time than cancer. That decline is punctuated with
acute episodes, hospitalizations and recovery throughout,
with overall function declining to some degree with each
acute episode. At some point, an acute episode comes and
this time, the patient has gone too far downhill to climb
back up. Death will come then, within hours or days, or
more often weeks, depending on the severity of the acute
episode and the amount of the patient's residual function.
The final group is the largest, accounting for nearly 40
percent of all deaths in the United States today, or about
one million deaths annually. These patients are the frail
elderly, destined for years of declining function, both
mentally and physically. About half of these patients have
serious mental decline as part of their aging. As these
patients lose function, they need increasing care and
support, often from a family member or friend. Death
ultimately comes at a point of significant physical frailty
and as a result of a challenge that would have simply been
an annoyance earlier in life to a stronger body, e.g., the
flu, a broken hip, pneumonia, a urinary infection. The
incidence of cancer peaks around age 65, and chronic heart
and lung disease peaks around age 75. For those who make it
to age 75, by far the leading cause of death is dementia
What are those in the final group -- the one million frail
and demented elderly -- dying from each year? In the newest
version of the International Classification of Diseases, a
list that doctors use to indicate the cause of death on a
death certificate, there are 113 possible choices. But "old
age" is not one of them. That category was removed from the
list long ago, in 1913. Scientists, doctors, and
anthropologists today debate whether old age in
technological America is a natural part of the dying
process, or a disease to be attacked.
Another end-of-life pioneer, Dr. Sherwin Nuland at Yale-New
Haven Hospital in Connecticut, conducted some fascinating
research in the 1970's. Dr. Nuland suspected that many of
his elderly patients were dying of old age (whether he was
allowed to write that on their death certificates or not),
that their bodies were declining and their systems shutting
down across the board. Together with Dr. G.J. Walker Smith,
the director of autopsy, Nuland studied the autopsies of 23
patients who died over a two-year period at Yale-New Haven.
The subjects were old when they died, with an average age
of 88, the oldest being 95. Twelve were men, eleven women.
The result confirmed Nuland's intuition. All 23 autopsies
revealed advanced atheromatous disease (thickening and
calcification of arteries) in the vessels of either the
heart or brain, and nearly all had it in both. Three who
died of other causes had cancers that doctors had never
known about. Three others had similarly undetected
aneurysms, ready to explode if another organ had not failed
first. Eleven brains that were studied microscopically
showed old infarcts (strokes), even though only one of the
eleven had a history of stroke. Several had urinary tract
infections. Fourteen had atherosclerotic arteries leading
to their kidneys. One man who died of stomach cancer had
gangrene in his leg.
"An octogenarian who dies of myocardial infarction is not
simply a weather-beaten senior citizen with heart disease,"
Dr. Nuland wrote about this research. "He is the victim of
an insidious progression that involves all of him, and that
progression is called aging." And Drs. Nuland and Smith
were looking at deaths from 1970 to 1972, long before our
country began its technologically-supported aging in
Aging happens in human beings, like leaks developing in a
dike. When technology plugs one hole here, a new leak
springs open down there because the water continues its
relentless pressure against the entire weakening wall.
Joanne Lynn makes the point that the newspaper headlines
shouting "New Drug Prevents Heart Disease in Elderly,"
could just as accurately read, "New Drug Promises Major
Increases in Dementia." The Alzheimer's Association
estimates that today there are 4.5 million Americans
suffering from Alzheimer's disease, and that that number
could climb to 16 million by the year 2050 unless a cure is
found. When a cure is found, pressure will build in another
spot along the dike.
Likewise, the U.S. Census Bureau estimates that the
population aged 85 and older will more than quadruple
between now and 2050, from 4 million to 18 million. At
present, only one person in twenty after age 85 is fully
mobile. In the year 2000, only Florida had a populations
with at least 17 percent of the citizens age 65 or older.
Twenty five years from now, 44 states will look like
Florida. My parents retired to Naples, Florida in 1984, and
we spent many great Christmas Days on the beautiful Gulf
Coast beaches. Parked at the beach one day I saw a hot-rod
Camaro with this bumper sticker: "When I Get Old I'm Going
to Move North and Drive Real Slow." Changes are coming.
The impact of our aging society is only beginning to
emerge. Indeed, it's hard to fathom the questions we will
face in a world where technology is advancing so rapidly.
And it's perhaps even harder to fathom how many of us will
be asking these questions. Likely the idea of nature taking
its course will be an even more distant memory as the U.S.
population ages. Decisions about the appropriate use of
medical treatment will need to be made all the time. The
tension will no doubt grow. We will want the machines if
the doctor believes she can return us to living life, and
we will want a natural dying free from machines if the
doctor can't help us. That line, elusive today, will likely
grow harder to find as technology continues its march
Yet however elusive that line may be, we still eventually
will step across it. Dying then will come to each of us,
just as it did to Dr. Lown's Mr. C in 1959, Dr. Potter's
Mr. X in 1975, Nancy Cruzan in 1990, and Terri Schiavo in
2005. The machines and new medicines can delay our dying,
but they can't stop it. And that ultimate fact, it turns
out, is very hard to talk about -- for patients, for
families, for doctors, even for lawyers.
About the Author
William H. "Bill" Colby (Kansas City, MO) is the lawyer who
represented the family of Nancy Cruzan in their right-to-
die case, the first such case heard by the U.S. Supreme
Court, on December 6, 1989. He worked with Senator John
Danforth's office on legislation which eventually became
Federal law, the Patient Self-Determination Act, and has
testified before different state legislatures and
legislative committees about law and ethics at the end of
life. He has also represented many families who have been
faced with agonizing questions about removal of life
support from a loved one.
Bill has appeared on Good Morning America, Today, CBS This
Morning, Frontline, Media & Society with Fred Friendly, the
MacNeil Lehrer Report and other national programs. He has
presented at the American Bar Association Annual Meeting,
DRI, ASLME, ASPEN and other national legal and medical
conferences, and has spoken to groups across the country on
the issues we face at the end of life.
Bill graduated from Knox College in 1977 with an English
degree and an emphasis in creative writing, and from the
University of Kansas Law School in 1982. After law school
he clerked at the United States Court of Appeals for the
D.C. Circuit, and practiced law in D.C. at the Wall Street
firm of Davis Polk & Wardwell. In 1985 he returned to
Kansas City and the firm of Shook, Hardy & Bacon. He is a
Senior Fellow with the National Hospice and Palliative Care
Organization in Washington, D.C., and the author of Long
Goodbye: The Deaths of Nancy Cruzan. Bill has taught at
the University of Kansas School of Law. He lives in Kansas
with his wife, four children, and their dog, Spot.
About the Book
Reclaiming our Right to Die in America
by William Colby
Published by Amacom Books
ISBN 0-8144-0882-6, 256 pages, hardcover, $24.95
Available through this site or directly from the publisher:
"Although many other books have covered these topics, few
possess Colby's engaging style and judicious insights."
-- Publishers Weekly
The time has come for a frank discussion about how we die.
UNPLUGGED is the blueprint for that talk.
Medical technology has helped mankind conquer tuberculosis,
polio, and countless other once certain-death diseases. It
has given us hope against cancer and AIDS, allowed heart
and brain surgeries that have saved untold numbers of
lives, and delivered us from the pain and crippling legacy
of injury. Medical technology, it seems, is a never-ending
string of miracles.
But it is also a double-edged sword. More often than not,
death today happens because of a decision to stop doing
something, or to not do it at all. As the tragic life and
death of Terri Schiavo so poignantly illustrated, universal
definitions of life, death, nature, and many other concepts
are elusive at best. UNPLUGGED addresses the fundamental
questions of the right-to-die debate, and discusses how the
medical advances that bring so much hope and healing have
also helped to create today's dilemma.
This compelling book explores recent high-profile cases,
including that of Mrs. Schiavo, and illuminates the complex
legal, ethical, medical, and deeply personal issues of a
debate that ultimately affects us all. Compassionate and
beautifully written, the book helps readers understand the
implications of current laws and proposed legislation,
various medical options (including hospice), and the
typical end-of-life decisions we all must face in order to
make informed decisions for ourselves and our loved ones.
Copyright ©2006 by William H. Colby. All rights reserved.
Reprinted here with permission of the publisher, AMACOM,
http://www.amacombooks.org. Please feel free to duplicate
or distribute this file, as long as the contents are not
changed and this copyright notice is intact.