Nar r ati v e Matters

Attending Death With Dignity

A nurse finds herself the center of controversy after effectively managing pain for
a dying patient.
by Sharon L aDuke

PREFACE: At the end of an illness or
in old age, dying without pain at a time
of our choosing seems like an entitle-
ment to many of us, especially baby
boomers used to controlling key aspects
of our lives. Health directives, living
wills, and medical ethicists to help medi-
ate between patients’ needs and institu-
tional exigencies are mechanisms at our
disposal to help ensure that we die a
“good” death when the time comes. Yet
such deaths are by no means guaranteed.
It is not unusual for institutions and
providers to lack the skills, systemic sup-
port, and comfort level—even when le-
gal backup exists—needed to deliver the
kind of end-of-life care many of us say we
will want. Sharon LaDuke, a nurse who
in the 1990s administered pain relief
conforming to a patient’s and family’s
wishes, recounts the trauma of facing
criminal charges for what she believes
was appropriate care delivery. Physician
Neil Calman encountered what he found
to be a moral dilemma: wanting to re-
spond to an elderly woman requesting
that he help her die but being legally con-
strained from acceding to her wishes.
Despite the increase in pain manage-
ment and end-of-life training in nursing
and medical schools, these two stories
show the difficulty providers and pa-
tients can still find when dealing with
terminal events.
H
e r na m e wa s w i l l i e d o b i s k y. The
widowed matriarch of a community-
oriented family, she had been a wife,
mother, Sunday school teacher, volunteer, and
neighbor. For many years she and her husband
had owned and operated The Surprise, a depart-
ment store in our small rural town. As a child, I
had been fascinated by the pneumatic tubes that
whisked messages from one part of the large
store to the other.
Willie once had been beautiful. Now in her
eighties, her face reshaped by years of steroid use
to control her emphysema, she was “dying by
inches,” as her son put it, and had been for
months before landing in our hospital for the last
time. In the emergency department (ED), lung
failure had raised the carbon dioxide level in her
blood so high that she did not have the mental
capacity to make her own health care decisions.
Anticipating this day, she had named her friend
Mary, a retired nurse, as her health care agent.
She had discussed her wishes with Mary, filled
out an advance directive, and provided a copy to
the hospital. But when Mary told the ED staff
that Willie did not want to go on a ventilator and
had completed paperwork to that end, the hos-
pital could not locate the document. And Willie
had neglected to give Mary a copy. Willie ended
up on the ventilator.
Often when patients go on the ventilator, they

Sharon LaDuke (ladukes@northweb.com) has been a registered nurse for more than twenty years, working in
acute care, education, human resources, and information management. She is the manager of a medical-surgical
unit in a rural community hospital and writes about nurses’ experiences with the legal system.

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DOI 10.1377/hlthaff.23.3.222 ©2004 Project HOPE–The People-to-People Health Foundation, Inc.
 Narr ativ e Matters

can come off again and survive after the reversible elements of their illness are
treated. But after a week it became clear that Willie’s ailments were not reversible.
Willie was a strong and proud woman whose quality of life had been poor for
some time. She had always said that she did not want to live on a machine, and her
loved ones supported her wishes. After multiple discussions among her health
care agent, her family, and the physician and nurses, the decision was made to have
her breathing tube removed.
Her family probably thought she would die
right away, but she did not. Her relief at being
off the breathing machine, which was replaced “Every breath was now a
by an oxygen mask, was soon followed by in- struggle, and her gray face
creasing dyspnea—a relentness, suffocating was contorted in a
shortness of breath. Not like the kind you get grimace.”
from running up flights of stairs, more like the
panic you felt as a kid when your big brother
held you underwater and you struggled to break free. Oxygen was being piped
into Willie through a mask, but her lungs had failed and she could not use the air.
Twenty-plus years of nursing experience has taught me that dyspnea at the end of
life is far more likely than pain.

Easing Suffering

B
o t h w i l l i e ’s fa m i ly a n d h e a lt h c a r e t e a m had anticipated this
problem, so the physician had written orders for analgesia and sedation.
These drugs reduce breathing difficulties as well as the patient’s awareness
of them. Willie was to receive a continuous, pump-controlled intravenous drip of
a morphine-like drug called Fentanyl and intermittent doses of Versed, a sedative
drug. At first these orders were adequate. But as the hours passed and Willie be-
gan to tire from the effort of breathing, her dyspnea worsened. Despite the physi-
cian’s promise to her three children that their mother would be kept comfortable,
she was not.
By the time I took over Willie’s care, she had been off the ventilator for a day. Ev-
ery breath was now a struggle, and her gray face was contorted in a grimace. Her
exhaustion and anxiety were preventing her and her frantic family from using the
time left to prepare for their final parting. When I informed the physician that the
present orders for Fentanyl and Versed were not controlling Willie’s dyspnea, he
increased the rate of the continuous infusion and wrote other orders that would
give me the tools I needed to keep her comfortable. The new doses, however, were
scary to me. Even though I knew that the only thing we could now do for Willie
was to make her comfortable, I had never given anyone such big doses at such
short intervals. I was, after all, a critical care nurse—skilled in preventing deterio-
ration and restoring normal functioning in a clinical setting focused on life-

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sustaining therapy. I was trained for something entirely different from what was
now needed.
However, I had recently been studying the care of the dying, particularly pa-
tients removed from the ventilator, so I knew that the new orders and plan of care
were medically appropriate. I administered the medications as ordered. Willie
stopped trying to push the oxygen mask away, sank back into the bed, relaxed her
furrowed brow, and stopped gasping for breath. Family members then took turns
holding her hand, telling her how much she meant to them, and saying goodbye.
They recalled old memories and recited prayers. Since I was a longtime lead so-
prano in my church choir—the same church as Willie’s, although I hadn’t known
her personally—the family asked me to sing “Amazing Grace” at her bedside,
which I did. Within a few hours Willie died peacefully, her family full of gratitude.
Willie might have been at peace, but I wasn’t. Despite my belief that the care
that had been provided was appropriate, I had stepped outside my moral comfort
zone into unknown territory. I had been driven by Willie’s and her family’s needs
but had given no thought to how I might feel about being the last person to medi-
cate a dying patient. When Willie’s suffering was over, the family home, and the
documentation completed, I was alone with my thoughts and began to question
myself. It is widely known and well documented that nurses and physicians can
feel guilt after ordering or administering analgesics and sedatives to people who
are dying. That’s because these medications have a “double effect”: As they ease or
end the symptoms associated with dying, they also can potentially cause vital
signs to deteriorate—in essence, hastening death. Many clinicians have trouble on
a moral level distinguishing between administering medications that might has-
ten death—an act that is required if the dying are to receive appropriate care—and
giving drugs in order to hasten death, which is euthanasia.
So I was uncomfortable, and I’m not the kind of person who keeps things to my-
self. Over several days I told a few key people how I felt about this event, using the
word euthanasia each time. My nurse colleague nodded sympathetically. My minis-
ter figured I was just grieving. A physician colleague (not the patient’s doctor)
said, “That’s what we do. Forget about it.” The nurse administrator, on the other
hand, replied, “Euthanasia is against the law in this state.”

Facing A Backlash

Y
o u ’ d t h i n k t h at l a s t c o m m e n t w o u l d h av e to l d m e right then
and there that I had to explain that my using the “E” word was emotional
hyperbole. But I had a good working relationship with this administrator,
and she had always been very supportive. I thought she would mull it over and that
we would have more discussions about not only this patient, but the hospital’s
end-of-life care generally. But she did not understand. She felt obligated to convey
the discussion to the risk manager, and an investigation was launched. When I re-

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quested that the case be brought before the hospital’s ethics committee, an admin-
istrator informed me that “euthanasia is not an ethical issue.” Shocked into silence,
I didn’t have the wits about me to point out that the committee would help clarify
that what had happened was not euthanasia.
One could argue that if I had kept my mouth shut in the first place, nothing
would have happened. But ill-advised words cannot justify the subsequent ac-
tions of hospital officials. Although neither the internal nor external peer review
subsequently performed found fault with my care, the hospital reported the inci-
dent to the state department of health. The investigation then conducted by that
department resulted in multiple citations against the hospital for failure to ad-
dress the needs of the terminally ill and one against the physician, but none
against me. Nevertheless, the hospital referred the matter to the state board of
nursing and the county district attorney.
A few days after I met with the risk manager, the hospital placed me on adminis-
trative leave. I was paralyzed by fear and depression. I did my grocery shopping at
3 a.m. so that I wouldn’t have to face anyone. But I also began to read everything I
could get my hands on about end-of-life care.
The more I read, the more I realized that I had “Now the hospital had one
done nothing wrong. In fact, I had done nearly
nurse facing criminal
everything right. My fighting spirit returned,
assisted by a well-placed kick in the rear from charges because she
my husband and the Dobiskys’ outrage at the medicated a patient, and
hospital’s actions. I hired two very competent one facing a malpractice
attorneys to represent me in the two different suit because he didn’t.”
aspects of the case—criminal and professional
(license-related). Not many nurses have the financial resources to do that; I was
lucky.
After some six months of leave, the hospital offered me the opportunity to re-
sign. Against my attorney’s advice, I declined and was fired, as expected. What I
didn’t expect was that the hospital’s lawyer would state in writing that I was fired
for committing euthanasia, or that the hospital’s CEO would allegedly refer to me
as “Nurse Kevorkian” at a public gathering. The disrespect and arrogance of these
officials was galvanizing. After hiring a third lawyer, I filed two lawsuits against
hospital leaders: one related to the termination of employment on a false premise,
the other for slander and other alleged wrongdoings. The Dobisky family also filed
suit, including among the defendants a nurse who had allegedly failed to provide
adequate relief of discomfort for their mother. Now the hospital had one nurse fac-
ing criminal charges because she medicated a patient, and one facing a malpractice
suit because he didn’t.

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Exoneration

W
i t h t h e f i l i n g o f t h e c i v i l s u i ts , the story broke in the local
papers. Shortly after that, the district attorney closed the investigation
into Willie’s death for lack of evidence. The threat of state troopers
showing up at my house with handcuffs was over. Now I had to deal “only” with
the professional disciplinary and civil aspects of this three-horned dilemma. I live
in an at-will employment state, and in due time the courts found that without an
employment contract I could be fired for any reason, even if the reason was false.
That left me with the lawsuit for slander. As you might expect, this suit was not
quickly resolved. The three years between the public disclosure of the accusation
and the settlement of the lawsuit were not easy for me and my family, the Dobisky
family, or the hospital and its employees. But I found support everywhere I went,
from the administrative nurse at the nearby hospital that hired me as a supervisor
in spite of everything, to nurse colleagues who lobbied elected representatives and
other authorities on my behalf, to the state nurses association, which saw in my
case the practice implications for all nurses who are caring for the dying. My
church, the community, the local media, and even some independent-minded hos-
pital board members also supported me.
The hospital did not fare as well. Headlines related to the case appeared with
each new legal development. For two years it seemed that not a Sunday went by
without at least one letter to the editor disparaging hospital leadership and its
choice of “big city” legal representation. Board members confided that the hospital
was losing its donor base. Pressure mounted to settle the case. Several develop-
ments finally made that possible. First, the state board of nursing did not find me
guilty of professional misconduct. Second, two of the three administrators in-
volved in my case had left the hospital, and the third had been reassigned. Third, at
the suggestion of an influential attorney who came to my aid pro bono, I directly
contacted the president of the hospital’s board and suggested that we bypass our
lawyers and see if we could negotiate a settlement. I had never been looking for
anything more than re-employment and reimbursement of legal fees and lost
wages, and the Dobisky family had pledged to drop their own lawsuit if mine was
settled. So we were able to come to an agreement in short order.
I’ve been back at the hospital for almost six years now. It was a pleasure to hear
a key physician refer to what happened as the darkest chapter in the hospital’s his-
tory and to say that the only thing I did wrong was to be ten years ahead of every-
body else. It was a long battle, one that most nurses would not have had the re-
sources to fight. It was a battle I should not have had to engage in.

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The War Continues

U
n f o rt u nat e ly, t h e e n d - o f - l i f e c a r e wa r i s fa r f r o m o v e r .
Much more has been done to educate providers in pain management since
Willie’s death in 1995. For instance, many nursing and medical colleges
have integrated end-of-life care into their curricula. But despite a national push for
such training, not all clinicians are competent in the management of the dying,
know how to switch their focus from quantity to quality of life, or have the inter-
personal skills to discuss such matters with patients and their families. Physicians
underprescribe and nurses underadminister an-
algesics and sedatives, giving doses that make “Physicians underprescribe
themselves, not the patient, comfortable. Evi-
and nurses underadminister
dence abounds in the health care literature that
lots of doctors and nurses feel the same ambiva- analgesics and sedatives,
lence I did. Yet end-of-life experts often are not giving doses that make
brought in to assist with care until hours before themselves, not the patient,
death occurs, if at all. The dying are kept in the comfortable.”
intensive care unit despite research-based evi-
dence that even well-endowed university hospitals have been unable to ensure
that patients in intensive care die comfortably. If I hadn’t asserted myself about
Willie’s need for more aggressive pain management, and been willing to personally
provide it, she would have died exactly the kind of death that she and her family
had sought to avoid, the kind that still takes place every day in hospitals across the
country.
Government and hospital policies create risk for anyone prescribing and ad-
ministering controlled substances. Legal systems tend to favor parties with levels
of economic resources and expert legal representation typically not available to
nurses. Ironically, while professional boards focus resources on the criminality of
overprescribing, civil courts award damages to survivors for inadequately treated
pain. “Angels of death”—nurses who have taken upon themselves to decide when
patients should die—make headline news every few years, while angels of mercy
struggle to carry out what the U.S. Supreme Court declared in 1997 to be the right of
every citizen: effective palliative care, regardless of whether that care hastens death.
As Frank Dobisky, Willie’s surviving son, told me, “Nurses should never have to
be put in the position where they feel guilty for doing their job.” Clearer, more con-
sistent rules and regulations at state and institutional levels, together with stron-
ger protections and support for physicians who order and nurses who administer
end-of-life pain management, would help ensure that clinicians don’t have to
second-guess themselves when a patient like Willie asks for effective pain allevia-
tion. Someday each and every one of us could be in Willie’s position. As patients
we will want our bedside nurses and physicians to have the support they need to
best meet our needs for a comfortable and dignified death.

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