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AGENDA FOR IMPROVING END-OF-LIFE CARE
Review of LAST RIGHTS : RESCUING THE END OF LIFE FROM THE MEDICAL SYSTEM
By Reginald H. Turnbull, CELA
We professionals working in the trenches are often too involved to take a broad
overview of an issue.
A journalist, however, tells stories, marshals statistics, observes trends, and
identifies the changes needed. Journalist David Shenk described coping with the
profound consequences of increased life expectancy in THE FORGETTING : ALZHEIMER '
S :
PORTRAIT OF AN EPIDEMIC , Doubleday, 2001. In a similar manner, Stephen P. Kiernan
portrays the big picture of how many elderly people die in dysfunctional ways in LAST
RIGHTS : RESCUING THE END OF LIFE FROM THE MEDICAL SYSTEM , St. Martin's Press, 2006.
Assigned in 2002 to investigate a physician reprimanded for administering death-
inducing sedatives and paralytics to kill a patient, Kiernan soon learned that the matter
was very complex. The patient's lungs had collapsed, and she had been placed on a
ventilator against her written wishes by an on-call physician. The reprimanded physician
took her off the ventilator and challenged Kiernan, before he would be interviewed, to
read journal articles by Timothy Quill, M. D.; Andrew Billings, M. D., and Sherwin
Nuland, M. D., experts in the care of people who are dying. After reading the articles,
Kiernan devoted several years of research and interviews to discover how America's
dysfunctional medical system denies death and what could be done to improve it.
Kiernan tells stories about how the lives of several people play either passive or
active roles living their lives before their deaths. He is especially poignant in describing
what he learned from the passive role his Father played in his death from a ruptured
aneurysm, in which his "family demanded more care, more interventions, more heroism,"
and of the active role his Mother played in her life before her death from terminal cancer,
in which she refused extraordinary treatment and organized the days before her death.
"There was a process, for me and my family, an education through these two
deaths," Kiernan wrote. "We discovered that the manner of a death has meaning,
reverberating long after the person has died. In my father's illness, I can instantly
conjure feelings of helplessness at seeing his dignity stripped away [and] a sense of
complicity in his suffering. . . .
". . . . Even now I can picture his sore eyes in the Falmouth hospital, his cracked
lips. I hope he never regained consciousness sufficiently to realize that his hands were
strapped down. In all, I feel an anguish quite apart from the sense of loss. This was a
powerful man who shaped so much of his life. Yet his dying did not go well. And no
repair of that is possible.
"By contrast," said Kiernan, "my mother's dying process was marked by rewards
and accomplishments [as her] waning of life occurred on her terms. She attended
important occasions. She left things in order, which was important to her. She made
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preparations from the financial to the spiritual. She had a chance to exercise medical
control, when offered the choice of that surgery [she decided not to do it]. She relished
that her final care was inexpensive. She made peace with her children and played one
last matriarchal role for her grandchildren.
"My mother also left an image that remains in my mind forever, but it is not one
of weakness or powerlessness or defeat. It is as feisty as her determined Irish temper: In
the end, her jaw was struck straight out."
The earliest story recounted by Kiernan is about Jack, a 52-year-old who died of a
heart attack in 1976 suddenly at his home while shoveling snow. Kiernan explains that a
generation ago in 1976, deaths occurred suddenly "with the speed and severity of a
guillotine blade." Now however, death comes from "sicknesses that take their lives by
degrees." Heart attacks as the largest cause of death have been replaced by chronic
obstructive pulmonary disease, congestive heart failure, diabetes that leads to kidney
failure, osteoporosis that results in falls, Alzheimer's and other dementias, stroke, and
cancer. Lives ended at home for 75 percent of deaths in 1920, but in 1994, 75 percent
died in hospitals or other institutions.
How did this shift happen? Kiernan points out numerous statistics about
Americans demanded "better delivery of the medical capacity . . .regardless of cost," in
the quest for "longer and healthier lives." If Jack were to have had his heart attack in
2006, his wife could dial 911, which did not exist in 1976. Although 1500 emergency
medical technicians (EMT's) were certified originally in 1971, they were not distributed
throughout the county by 1976. By late 2003, however, about 900,000 EMT's in 54,339
ambulances and several hundred air medical transports would be ready to respond
anywhere in the country. Portable defibrillators could be used to get Jack's heart going
again. Kiernan cites statistics that "In 2002 alone 2,057 heart transplants, 93,000 heart-
valve replacements, and 515,000 cardiac bypass procedures" were successfully
performed in America's quest for saving heart attack patients.
Further contributing to greater life expectancy were such social policy phenomena
as life guarding courses offered by the Red Cross, safety standards from the National
Traffic and Motor Vehicle Safety Act, investigations of air crashes by the Federal
Aviation Administration, and food supply standards under the Wholesale Meat and
Poultry Acts. Kiernan further credits consumer and employee lawsuits for improving
products and workplace safety.
Yet with all of this death-defying activity, "there may be a great deal wrong with
using intensive medicine," understates Kiernan, "on a person whose death is certain and
near." Especially as he points out that a study indicated that half of American patients
who die in hospitals suffer "moderate or severe pain at least half of the time" during their
final days. Moreover, 38 percent of patients who die in the hospital spent ten or more
days in intensive care or on a ventilator. In fact, 44.9 percent of deaths occurred after life
support was withdrawn or withheld. Kiernan says, "In essence, people in that situation
were eager to die."
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It is not much better in nursing homes according to the studies that Kiernan
reports where over twenty percent of Americans end their lives. "Strapped down,
hungry, dirty, humiliated—that is the experience of American elders.
Palliative and hospice care offer the best remedy for improving quality of care,
but they are resisted by the medical establishment. Kiernan cites studies that such care is
much more cost effective than intensive medical intervention with all of the attendant lab
results and imaging tests. This will take "decades" states Kiernan for the medical system
to embrace the "tenets of palliative care and thereby realize the potential savings."
Interwoven amongst the statistics and the argument on how the medical system
must change and how other countries have better priorities, Kiernan tells his stories based
upon interviews -- some disappointing in which the medical system of inertia ignored
patients' wishes reducing patients' to passive suffering and some vividly rewarding in
how purposeful and active lives could be before deaths occur.
Kiernan sets out an agenda for change involving several actors. The Federal
Government should set policy and direct funding towards palliative care. State
governments should regulate physicians such as the California law requiring training in
pain management and then disciplining physicians when pain alleviation standards are
not followed. States also should facilitate communication of advance directives so that
patients' wishes would better be followed. Litigation such as Kathryn Tucker's Bergman
case in California could force more change in the system, states Kiernan.
The medical community should require more training in death and dying rather
than discounting and dismissing care for the terminally ill, according to Kiernan. The
Joint Commission on Accreditation of Healthcare Organizations should follow through
on its initiative in 2000 to encourage palliative care and pain management rather than
back off. Kiernan says that the medical system needs to sustain its focus on the patient as
a person when that person is near death rather than "a manifestation of illness."
Finally, Kiernan says that the American Public's "isolating sorrow and emotions"
from witnessing our unsatisfactory ways of dying will become a "juggernaut" once
directed to positive change. The American Cancer Society, the American Heart
Association, American Lung Association, AARP, and business groups will likely demand
that the medical system reform end-of-life care. Lawyers in the American Bar
Association [and NAELA] could emphasize more aggressively assisting clients with clear
healthcare directives and enforcement of them. Patients, says Kiernan, should "insist on
dignified end-of-life care," prepare their own healthcare directives and have their agents
enforce them, and reflect upon and communicate how they want to shape their end-of-life
experiences.
In concluding his exposé and hopeful, practical descriptions of how the system
could work better, Kiernan reports four lessons he learned as he recognized that he
became personally involved in what was to be a broad policy review of the too-often
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disorganized, deficient, and disastrous ways many people are cared for before they die.
Readers should read the book to appreciate his lessons, summarized as follows: first, we
are "at all times bearing our mortality around with us inside;" second, "death teaches us
compassion;" third, "helping someone who is dying, even if just by providing brief
entertainment, is one of the most gratifying experiences imaginable;" and four, "the most
important time in your life is not the moment of your death but the time as it approaches."
As a lawyer who actively assists clients in dealing with these life and death issues
every day with planning, drafting, and advocating, I join with palliative care guru, Ira
Byock, M.D., who wrote about Last Rights, that "this is one book that America must
read!" NAELA members will find it to be both a resource and a call to action in better
serving their clients.
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