| There’s
light at the end of the tunnel for America’s end-of-life care
By
Robert Milch and J. Donald Schumacher
When
53-year-old Barbara Wein was diagnosed with ovarian cancer three
years ago, she faced what has become the end-of-life dilemma for
most critically ill Americans.
Like many baby boomers, Wein was used
to being in control of her life. She was a National Ski Patrol
member, physically active and independent. She and her husband
of 26 years traveled widely. She had no children but enjoyed an
extensive family circle — both her parents were alive, and she
had two sisters and several nieces and nephews.
She read extensively about her disease,
harbored no illusions about its seriousness and decided to fight
it. She tried surgery, then months of chemotherapy followed by
another operation and continuing rounds of other therapies.
“Early in my struggle with ovarian cancer,”
the Buffalo, N.Y., homemaker told friends this year, “my goal
was to beat it, despite the odds. Probably six months into my
diagnosis, I realized I might not.”
When she tried to talk to her medical
team, they had no problem discussing the physical effects of her
disease, but were reluctant to talk about its emotional impact.
“They seemed uncomfortable about it,
and I didn’t push it,” she said.  But
Wein wanted to live the rest of her life with hope and desperately
needed guidance.
Last winter, she got sicker, and she
had to lean more heavily on others for her care, something she
never expected nor wanted. Her husband’s work frequently kept
him away from home, and she finally moved in with her mother.
Abdominal pain from a recurrent tumor kept her indoors much of
the time. Doctors predicted her death within a year, but the only
treatment they offered was a course of “salvage” chemotherapy.
But the chemotherapy caused weeks of
nausea and vomiting. Wein had a tube in her stomach to vent a
bowel obstruction. She was in continual pain. She couldn’t sleep.
Anxiety and depression took hold until she couldn’t think straight.
After 10 days in the hospital, she was sent home, where she was
kept going by an intravenous feeding tube.
As death drew closer, Wein nearly lost
her will. “My symptoms had taken over my life,” she later said.
“I wanted to die. Death had to be better than feeling sick.” Wein
knew only one thing — this was not how she wanted her life to
end.
The questions Wein faced in the months
before her death now hang before 76 million baby boomers who are
approaching old age and caring for ailing parents: How can the
critically ill make the most of their time? How can we gracefully
prepare for death? And how as a nation can we start to rethink
the way we live with dying?
Wein’s experience is mirrored in a June
report from the National Cancer Policy Board, a committee of the
Institute of Medicine and National Research Council, that found
half of the 550,000 Americans who die of cancer each year suffer
needlessly from pain, nausea, depression, fatigue and other symptoms.
Yet only 1 percent of the National Cancer Institute’s $2.9 billion
budget went to research and training related to palliative care,
which focuses on pain management and comfort for the critically
ill in a hospital setting.
Because of American medicine’s “single-minded
focus on finding a cure for cancer, many cancer patients and their
families are receiving inadequate pain and symptom control, as
well as poor psychological, social and spiritual support,” the
report found.
This year, in a landmark decision, a
California jury awarded $1.5 million to the family of a deceased
California man after finding a doctor negligent in treating his
pain. The decision is the first in which a jury determined that
inadequate treatment of pain translates into abuse of an elderly
person and could affect how medical licensing boards and the legal
system view complaints about people in pain.
The medical and legal professions are
just now recognizing serious deficiencies in care of the dying
first identified in a pivotal 1995 study funded by the Robert
Wood Johnson Foundation. Of 9,000 critically ill people in the
study, half had poorly controlled pain. Many of their doctors
were unaware their patients had expressly asked not to be resuscitated
or simply disregarded their wishes.
The report, known as the SUPPORT study,
alarmed the health care profession by putting a very public spotlight
on the pervasiveness of inadequacies in care planning and delivery,
the lack of communication among those charged to care for the
dying and the resistance of hospital culture to change.
There are signs of both great longing
and great promise ahead. This is America’s other budding crisis
in health care — while research for cures of life-threatening
diseases barrels ahead, more and more Americans are also looking
for better ways to die.
In a 2000 survey of seriously ill patients,
bereaved families and health-care practitioners published in the
Journal of the American Medical Association, Americans listed
the goals for the end of their lives this way: Control of their
care, time to build stronger relationships with loved ones, relief
of care-giving burdens on others, and most of all, the choice
to avoid a prolonged, painful death.
The path toward more compassionate end-of-life
care is well lit. Kathleen Foley is one of the American pioneers
in pain management and palliative care and attending neurologist
at Memorial Sloan-Kettering Cancer Center in New York. She said
the SUPPORT study pointed out “the critical need to apply the
knowledge we have now to prevent needless suffering.”
“We have made extraordinary advances
in pain management and palliative care,” said Foley, “and we need
to ensure that all Americans have access and availability to state-of-the-art
symptom control and supportive therapies.”
What Foley is referring to is medical
care that can be as simple as pain medication offered by a primary
doctor to entire teams offering treatment and counseling to dying
patients and their families, even while still searching for a
cure.
In the six years since the SUPPORT study
was released, America’s health care system slowly has started
to respond. Hospice care, mainly for dying patients at home, has
become more familiar to Americans, and according to a 1999 survey
by the American Hospital Association, 20 percent of hospitals
now have some type of palliative services.
Influential medical groups such as the
American Board of Internal Medicine, the American College of Surgeons
and the American Cancer Society are redefining their roles in
end-of-life care. Insurers throughout the country — including
Blue Cross-Blue Shield, Kaiser-Permanente and the National V.A.
Healthcare system — are looking at expanding coverage of end-of-life
care.
The focus on compassionate care is especially
important in the doctor-patient relationship. A study of medical
textbooks published in the Journal of the American Medical Association
found doctors are taught little about palliative and hospice care
as part of traditional training. Less than one-third of medical
schools and residency training programs integrate palliative care;
the same is true of schools of nursing and social work.
The result: Physicians who have a hard
time listening and talking honestly and compassionately with patients
as they navigate the shoals of end-of-life issues — from breaking
bad news to planning treatment to preparing a patient for death.
“Understanding the concerns, needs, hopes
and fears of patients and their families is an essential first
step in providing optimal care in this situation,” said Dr. Bernard
Lo, director of the Program in Medical Ethics at the University
of California, San Francisco. To help doctors do this, the American
College of Physicians/American Society for Internal Medicine has
published articles and brochures that doctors can give out to
patients and their families.
Hospitals, too, are looking more closely
at institutional training and programs.
“Hospitals strive constantly to improve
care for all our patients, especially those at the end of life,”
said Dick Davidson, president of the American Hospital Association.
“Can we do a better job? Always, and the key is education and
innovation.”
Many Americans got a first glimpse of
the new possibilities in 2000, when PBS broke a major cultural
taboo with its critically lauded four-part series, “On Our Own
Terms — Moyers on Dying.” The series, which examined alternative
ways to approach death, pulled in 60 percent more viewers than
any show ever aired on the public network.
The momentum from that series flowed
nationwide, resulting in spirited grass-roots efforts to get out
the end-of-life message. In Kansas alone, 21 coalitions are leading
their communities in identifying and addressing issues such as
pain management and planning for end-of-life care.
Kathleen Foley, who also is director
of Project on Death in America, a nonprofit group that encourages
innovations in end-of-life issues, has watched awareness and treatment
options steadily grow over the past 30 years.
“As we focus attention on transforming
the culture of death in America, it’s useful to look at the history
of death and dying in this country,” Foley said. “At the beginning
of the 20th century, Americans died at home. With the professionalization
of medicine and the institutionalization of medical care, the
care of the dying shifted from home to hospital.
“Although there is wide variation in
the place of death,” Foley said, “the majority of Americans continue
to die in hospitals.”
Despite that fact, the message is spreading,
from hospice bed to nursing-school classroom: Baby boomers, accustomed
to knowing what they want and how to get it, are beginning to
demand the ultimate right.
As the end draws near, Americans are
saying, give us the time, information and guidance to move to
the final reprieve of palliative and hospice care. Allow us in
our last days to live smart, to embrace the life we have left
and to make our deaths our own.
Which, finally, is what Barbara Wein
did.
After doing her own research, Wein called
her local hospice, asked her physician for a referral and was
admitted to its inpatient unit.
At the Center for Hospice and Palliative
Care in Buffalo, NY, Wein found solace. First, medications promptly
controlled her pain, nausea, vomiting and depression. She was
able to sleep and rest, and over the next days, she had rich discussions
with family, friends and staff, exploring what her goals were
for the rest of her life. From these were derived a plan of care
to maximize her stamina while maintaining her comfort.
She still had “a few things to tie up,
a few things I want to do.”
Barbara elected to resume getting her
nutrition intravenously. She took a number of brief road trips
— a last time to her home, a visit to a lighthouse on the lake.
She had a “hen party” and numerous visits with friends. She and
her mother discussed her experiences with a group of medical students
who came to the hospice as part of their Family Medicine rotation.
They kept her for more than an hour, questioning, talking and
listening.
A few days later, she decided it was
time to stop the intravenous fluids that had tided her over as
she took control of her life.
Five days later, Barbara Wein did beat
the odds. She died the way she chose.
Dr. Christopher Kerr also contributed to this article.
2001, Partnership for Caring, Inc.
Distributed by Knight Ridder/Tribune Information Services. |
