Download A Commentary: Hospital Experience and Meaning at the End of Life

The Gerontologist
Vol. 42, Special Issue III, 34–39
Copyright 2002 by The Gerontological Society of America
A Commentary: Hospital Experience
and Meaning at the End of Life
Sharon R. Kaufman, PhD1
don (1994), A. Frank (1995), G. Frank and colleagues
(1998), Kleinman (1988), Mattingly (1998), and Rubinstein, Kilbrige, and Nagy (1992). The empirical studies
of those scholars provide important and useful examples of the multiple impacts of illness and medical
treatments on the self and the ways in which meaning
is constructed through the lens of suffering.
Just as meaning at the end of life is known through
the biography of the life, the experience of dying, for
so many Americans, is understood through hospital
treatment and the pathways of hospital decision making. This basic fact is sometimes overlooked in the
quest by health professionals to discover and address
meaning as a discrete entity, as though it were an isolated entity that could be found through direct questioning. The widespread cultural conversation in American
society about autonomy, “death with dignity,” and “a
good death,” which focuses on the individual person
as the unit of authority and action, ignores the power
of the hospital as an institution and bureaucratic system to make dying happen in certain ways and thus to
be experienced in certain ways. Most Americans still
die in acute care hospitals (Institute of Medicine,
1997). When faced with critical illness or a terminal
prognosis, and especially when they find themselves
in the strange and demanding hospital environment,
patients and families certainly worry about death and
hope and pray for recovery. But, they do not often feel
in control of very much in that institutional setting,
and they rarely ponder a style or type of death there.
Desperate to know what is wrong, anxious, exhausted, confused, hopeful, and prodded by the medical staff, however gently, to focus on the next decision point, they seldom consider what “a good death”
would entail or how to facilitate such a notion.
In some circumstances, when death can be anticipated or acknowledged as likely or possible, “spiritual”
needs and expression become obvious in the hospital
environment, for example, when a patient or family
requests a priest or a rabbi, when they respond to unsolicited visits by the hospital chaplain, or when a patient
says goodbye to family and friends or communicates,
somehow, that she or he can no longer fight for life.
Spiritual expression is evident, too, when family members gather at the bedside to talk, pray, sing, reflect,
and acknowledge the ending of a life. Doctors, nurses,
social workers, and chaplains quietly and unobtrusively
The research and practice agenda set forth by Dr.
Daniel Sulmasy (2002) foregrounds the humanity of
the patient rather than the treatment routines, medical algorithms, and institutional constraints that often
preoccupy health professionals, and it emphasizes the
fact that an engagement with the human, the vulnerable, is a central source of meaning and healing at the
end of life. There is no doubt that attention paid to
spiritual dimensions of a life is one important way
both to relieve suffering and anxiety and to acknowledge finitude and the transcendent. His assessment
that “the spiritual” or “the religious” cannot be analyzed or understood as a separate entity removed
from the context of a life is an important one. After
that, any methodological tools aimed to measure spirituality per se as a distinct variable are fraught with
difficulty. But, regardless of the limits of various measurement strategies, the awareness that end-of-life
care includes—in fact demands—a human relationship between the health professional and the dying
person is an important step in providing dignity to
those who are dying.
Changes in medical care practices that promote
humane interactions at the end of a person’s life are
being implemented in hospice and palliative care settings around the United States. A number of specific
strategies that are designed to address the humanity
of the dying person and that pertain to spirituality
particularly are described in the recent sourcebook
for clinicians, Improving Care for the End of Life
(Lynn, Lynch, & Kabcenell, 2000). As the collaborative innovations described in that volume illustrate,
health care delivery practices modified to emphasize
listening to the dying patient and being present with
that patient go a long way toward the creation of dignified dying. There is a rich literature in anthropology
and sociology that provides qualitative research perspectives on eliciting the meaning of serious disease and
finitude for ill persons, for example, Becker (1997), Gor-
The research on which this article is based was funded by the National
Institute on Aging (Grant AG13636) and the National Institute on Nursing
Research (Grant NR05109), Sharon R. Kaufman, Principal Investigator.
Address correspondence to Sharon R. Kaufman, Professor In Residence, Institute for Health and Aging, Box 0646, University of California,
San Francisco, CA 94143-0646. E-mail: [email protected]
1Institute for Health and Aging, University of California, San Francisco.
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The Gerontologist
be anticipated and, perhaps, supported by the health
care team (see also Lynn, 2001). The other three clinical pathways they describe, which together represent
more than half of Medicare patients at the end of life,
do not, by their very structure, provide much, if any,
opportunity for addressing spirituality in particular, or
the meanings surrounding life’s close more broadly.
Those three pathways include: (a) a small percentage
(7%) of persons who die suddenly; (b) a larger group
(16%) characterized by congestive heart failure and
chronic lung disease, for whom prognostication and
thus end-of-life planning is known to be difficult (see
also Lynn, Harrell, Cohn, Wagner, & Conners, 1997);
and (c) the largest group (47%), characterized by extreme frailty, including the dementias. Only 22% of
the Medicare decedent sample described by Lunney
and colleagues could be characterized in advance of
death as “terminal.” The other three patterns of dying
serve to underscore the difficulty of assessing meaning, spirituality, religiosity, or suffering through direct
questioning of the patient; through engaged, reflective
conversation with the patient; or through unequivocal statements by family members about what a patient wants at the end of life. Most persons in those
three groups either are not known and are not assumed to be near death, with the result that the end of
life and its meanings are not on anyone’s agenda, or
are unable to express what is important to them.
Lynn and colleagues (1996, 1997), Christakis (1999),
and others have written about the difficulty of prognostication when death is near. One common result of
that inability to recognize death’s approach is the adherence to restorative treatment regimens sometimes
almost to the moment of death. The ubiquity of the
high-technology mechanical ventilator and the lowtechnology feeding tube exemplifies common treatment strategies that result from the inability to clinically predict and acknowledge death. The well-known
“revolving door patient”—very frail, with multiple
chronic conditions, who has repeated hospitalizations
in the months before death, including stays in the intensive care unit—is emblematic of the cultural confusion about how we sometimes attend to the end of
life. Aggressive treatment to ameliorate symptoms
frequently trumps the broader picture of final decline
and person-centered care to prepare for death (Kaufman, 1998). In order for that picture of inevitable decline to be acknowledged and then translated into
palliative care, health providers must consider, all at
once, the following: the ultimate trajectory of the disease, medical goals in the context of decline, awareness that the end of life is near, and the interests of the
person who is a dying patient. A “time for dying”
(Glaser & Strauss, 1968)—with all that idea implies
for responding to the humane, facilitating closure of a
life, and allowing a space for finitude and the transcendent—is difficult to create for the majority of persons who actually are near death, especially within
the existing culture and structure of the American
acute care hospital.
Many variables contribute to hospital trajectories
in which dying is not acknowledged or is not planned.
facilitate such moments in their ongoing hospital
work. When any of these things happen, dying is identified, and the “biopsychosocial-spiritual” that Sulmasy refers to can, at least in part, be revealed. Then
one can acknowledge that something essential has
taken place to mark the crossing of life’s threshold.
My own recent anthropological research investigated ways in which dying occurs in the acute care hospital and focused specifically on how hospital experience shapes meanings about the end of life for patients,
families, and health professionals. I spent several years
(beginning in 1997) observing and recording trajectories of disease and medical care, as well as observing
debates and discussions about that care. I paid particular attention to patient, family, and health professional points of view about treatment near death and
the meaning of the nearness to death for patients
and, mostly, for their families. There is no doubt that
spirituality—however that term is construed—is a
powerful component of the multiple meanings surrounding hospitalization and dying. Rather than look
to discrete measurement tools as guides for health providers to locate and specify the meaning of death to individuals, this commentary engages the topic of meaning by drawing attention to the fact that meanings are
always embedded in and made through intersubjective relations, cultural worlds, and structures of
power. For example, what constitutes “the spiritual”
within the dying person, especially when that person
is a hospitalized and critically ill patient, cannot necessarily be seen, analyzed or known as an isolated entity, removed from its emplacement in contexts of action and reflection. In addition, the search for and
development of humane models for healing the
patient—humane from the health provider perspective,
that is—may obscure an equally compelling reality in
the hospital setting: the family’s understanding of the
patient’s condition and their responses to that understanding. Family expressions of meaning include, for
example, the conviction that a person sustained by
medical technologies will recover, the hope that hospital care can reverse organ-system failure, and the refusal to authorize the withdrawal of treatment. Those
expressions are sometimes at odds with health providers’ ideas of how best to achieve a good death.
Choices that families face, which are constructed for
them through the rules and norms of hospital culture
(a point that cannot be emphasized enough), often are
not relevant to their experience.
The desire among health professionals to find some
connection with the spiritual dimension of dying patients’ lives so that patients may express and fulfill
that part of themselves and so that their deaths can be
categorized as “good” is important, but it presupposes
that persons near death are sentient, responsive, expressive, and able to converse, let alone articulate
what can be labeled by them or others as “spiritual
needs.” This is rarely the case. Lunney, Lynn, and
Hogan (2002) delineate four distinct clinical pathways to death among the elderly, only one of which is
reflectively acknowledged by patients (and by health
providers) as a “dying trajectory” so that death can
Vol. 42, Special Issue III, 2002
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throat and lungs so he would breathe on his own.
They were unsure how to proceed if he needed to be
reintubated sometime later to survive. Would the
patient want to be reintubated? Did his wife know his
wishes? The team wanted to meet with Mrs. Brown to
ascertain the patient’s view about life prolongation.
Two physicians, a social worker, a chaplain, and I
were present during the meeting with Mrs. Brown,
who said, as soon as she entered the room, that she had
not slept much and that she was a worrier. She was
slim and frail-looking, in her mid-to-late 80s. She
talked freely. We learned from her that she and her husband had been married 56 years; that he had owned his
own business for many years; that she had cared for
him since his stroke 30 years before; and that, she
said, “He’s the only thing I have, and I want to hold on
to him as long as I can. The last thing he said to me
was, ‘I want to live.’” She informed the group that he
was Irish and strong-willed, that she was Italian and
equally strong-willed, and that she needed him to come
home and fight with her. Here the medical team smiled.
She talked a great deal, but the team did not learn Mr.
Brown’s wishes about life prolongation in that specific
context—on a mechanical ventilator in the ICU.
One of the physicians said to Mrs. Brown, “We
have a little bit of a dilemma. He’s not an optimal candidate to completely remove the tube right now.
Sometimes it’s hard to decide when to pull the tube
out, but he could die if we do it. We’re close to the
time to do it, though, and we need to know what to do.
Would he want to die if he can’t breathe on his own?”
Mrs. Brown replied, “I’ll leave it to God’s will. I’m
going day by day.” The social worker commented,
“We have some trouble now with God’s will and medical technology. Medical technology can prolong life
past the time when the person would die on his own.”
Mrs. Brown did not respond. In fact she thanked the
staff for everything they were doing and left the room.
The staff remained perplexed about what the patient
would want. The next day, Mr. Brown was removed
from the ventilator and he was able to breathe on his
own. He was moved to a medical floor. Over the next
3 weeks, although he was receiving medications, oxygen, and nutrition through a feeding tube, his condition deteriorated. During that time Mrs. Brown was
too anxiety ridden to return to the hospital. Mr.
Brown died following a 1-month hospital stay. For
most of that time, the staff, who had predicted Mr.
Brown’s death despite the treatments they were giving
him, could not facilitate what they considered to be a
good death because they received no direction from
the family.
In contrast, the family of Mr. Thomas was absolutely clear. But, their conception of the person, the
moral, and the religious frustrated the health care
team at every turn. Mr. Thomas, age 72, was surrounded by a large, close, and religious African American family. He had endstage renal disease, vascular
disease, coronary artery disease, lung disease, and diabetes. He had been on dialysis for 3 years. At the
outpatient clinic on the dialysis machine, he suffered a
cardiac arrest. The nurses resuscitated him, he was
At least five stand out as particularly recalcitrant: (a)
the general effort to employ and reap the benefits of
life-sustaining treatments, even in the face of extreme
frailty and overwhelming disease; (b) the priority
given by physicians, nurses, and families to symptoms
of disease exacerbation that can be treated aggressively and immediately, regardless of the age and
frailty of the patient; (c) family anxiety and surprise
that death may be near and their hopes for the patient’s recovery, which are often uninformed by the seriousness of the disease; (d) the fact that family cannot usually plan for “a good death” in terms that
health providers request; and (e) the fact that patients
rarely articulate to family or physicians their desires
either for life prolongation by technological means or
for the cessation of treatments. It is impossible and
would be reductionistic to cite one activity, procedure, policy, or player as ultimately responsible for diverting health professional attention away from the
dying patient as a person or failing to pay primary attention to the meanings, for the patient, that surround
dying. The compelling nature of these five variables
thwarts our ability to elicit and then address meanings at the end of life. Yet one optimistic finding
stands out clearly from my own research and that of
others: Despite the presence of these structural and
cultural obstacles to what hospital personnel consider
planned and thus dignified deaths, health professionals do struggle mightily to interpret what the patient
would want in the way of treatments when she or he
is critically ill and to operationalize humane dying
scenarios. But, those tasks are rarely straightforward.
Three examples from my own research will illustrate how one of these variables, family hopes and
perceptions, is often played out and how multiple and
conflicting meanings are brought to bear on the care
of dying hospital patients. Although health providers
hold their own meanings about good dying practices
in the hospital context, family members are preoccupied not with good dying, but with other concerns, especially their hopes for the patient’s recovery, their
long-standing relationship with the patient, and their
sense of overwhelming responsibility for critical decision making. Spirituality and religiosity may infuse
those preoccupations in a variety of ways, but feelings
about the presence of God, a sense of the transcendent or awareness of the life force within the patient,
for example, are not necessarily articulated or apparent. Sometimes patient or family expressions of spirituality are at odds with other meanings that circulate
within the health care delivery system.
Mr. Brown (all names are pseudonyms), age 89, arrived at the emergency department (ED) from a nursing home with a diagnosis of myocardial infarction
and aspiration pneumonia (Kaufman, 1998). He was
intubated in the ED and sent to the intensive care unit
(ICU). On the ninth day of his stay, the social worker
invited me to attend a team conference with Mr.
Brown’s wife. The medical staff was attempting to
“wean” or remove the patient from the mechanical
ventilator—first by lowering the amount and pressure
of oxygen and then by withdrawing the tube from his
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The Gerontologist
the family considered them, I think, but couldn’t let
go even that much—to have a DNR [Do Not Resuscitate] order written. I spoke with the wife just after
she arrived in the ICU after Mr. Thomas died. She was
tearful and appreciative of everything we had done to
help keep him alive. She knew we had tried our best.
She and her family have to live with what happened,
and it appears that giving ‘life’ our best shot is some
consolation to them.”
In the case of Mr. Brown, the health care team was
perplexed by Mrs. Brown’s lack of clarity about the
meaning of the patient’s medical condition and about
the implications of removing the mechanical ventilator. Mrs. Brown’s silence on a topic of importance to
the medical staff prevented the team from enacting a
treatment plan that acknowledged and prepared for
death in a way they considered dignified. In the second example of Mr. Thomas, the large family’s desire
to prolong life at all costs, despite the futility and suffering the hospital staff perceived, created discomfort
all around and led to the kind of death many people
claim not to want. In the following example, the consideration of meaning for the family of the patient is
trumped first, by pressure the hospital staff felt to enable a certain kind of death and, second, by the inability to prognosticate accurately about the timing of
death. This final example depicts the “extreme frailty”
trajectory outlined by Lunney and colleagues (2002),
the most common end-of-life pattern they discern. It
takes place outside the ICU, on a medical ward.
Mrs. Vinh, age 84, an immigrant from Vietnam,
had been diagnosed with Parkinson’s disease 6 years
before. In the months before her hospitalization, Mrs.
Vinh could not walk. It took 3 or 4 hr to feed her each
meal. She had become incontinent and her physical
condition and mental state were deteriorating. But
she was still responsive. Six weeks before I met the patient and her daughter in the hospital, the attendants
at home as well as the doctors, nurses, and speech
therapist who were caring for Mrs. Vinh all felt she
was not getting enough nutrition. They agreed without debate that Mrs. Vinh needed a feeding tube, a
gastrostomy tube, and the tube was inserted. Aspiration pneumonia and the migration of the tube followed, and Mrs. Vinh was admitted to the hospital
for surgery to replace the tube. “This was a very hard
decision,” the patient’s daughter said, “because we
knew she was a high-risk surgical patient.” As Buddhists, as Asians, she told me, adept at quickly translating her way of knowing into language that health
care providers could easily understand, that decision
was not based on a quality-of-life consideration—
“My mother hasn’t had any quality of life for two
years,” she said. The family wanted to prolong Mrs.
Vinh’s life. On the other hand, they did not want to
do anything that would create pain and suffering.
They had decided previously that Mrs. Vinh would
not be put on ventilator support if she could no longer
breathe on her own, and she would not be subjected
to resuscitation if she had a cardiac arrest. Other than
that, her life should be maintained.
The surgery was not complicated, but in the days
taken to the ED, and according to his primary care
physician, he “arrested again, at least one, probably
two more times, and had to be shocked a total of
three times. He wound up in the intensive care unit in
a coma.” Mr. Thomas was receiving mechanical ventilation and would not survive without it. The family
came from all over the country to be at the bedside.
The primary care physician told the family that
they should think about what the patient would want.
He then told them what he wanted—to remove the
mechanical ventilator support and let Mr. Thomas
die. He wanted to discontinue dialysis and take Mr.
Thomas out of the ICU and put him in a room where
he could die with his family present. The physician told
me, “I actually thought that they were pretty much in
agreement with me that he probably wouldn’t want to
continue and that he would want life support stopped,
and that’s what we ought to do.”
To the doctor’s surprise, after the family discussed
the situation among themselves, with their minister
and with a relative who was a minister, they were
“unanimous” the doctor said, “in wanting to continue all life support, including CPR [cardiopulmonary resuscitation], if he should arrest. I was very surprised after the long discussion we had about this.
They wanted ‘to go for life,’ as the wife said. . . . She,
in particular, could not fathom the idea of stopping
any treatment that would hasten his death. And that’s
exactly the way she sees it—as tantamount to euthanasia.” The physician continued, “There’s only one
relative who talks about miracles. The wife understands that he is dying, knows that that may happen
any time, is not expecting miracles, but just cannot
affirmatively take that step to end his life.”
Other members of the medical staff, who thought
that dialysis treatments and ventilator support should
be withdrawn from the patient immediately, found
the family’s opinion ethically troubling. “Some of the
staff put it in moral terms,” I was told by Mr.
Thomas’s doctor, “that it was immoral what we were
doing to him. Just like the moral terms the wife used
when she said it was immoral to stop.” That physician brought together several members of the hospital
ethics committee, some of the treatment physicians,
and several family members in the hopes that an open
discussion would lead to resolution. He hoped first,
that the family could be persuaded at that time to stop
life-prolonging treatment. If that was not possible, he
hoped that the medical team could, through learning
the family’s perspective of the situation, feel more
comfortable providing care to a permanently comatose patient. Neither of those hopes were realized.
One month and 4 days after he was admitted to the
hospital, Mr. Thomas died following a cardiac arrest.
His physician gave his version of the final moments:
“Mr. Thomas died after a longish CPR—truly a ‘full
code.’ Not a peaceful death. But clearly the death his
loved ones chose for him by requiring that all efforts
be made to keep him alive. Of all the procedures we
put him through, this was the worst, something I
wanted to prevent from happening. The family, particularly his wife, knew my wishes. She and the rest of
Vol. 42, Special Issue III, 2002
37
ter told me she was going to leave the hospital for
awhile, to clear her head and not think about things.
Mrs. Vinh died 2 hr later in her hospital bed, before
her family “chose” anything.
I observed scores of families faced with what they
perceived to be pressure to withdraw life-support
measures from a relative. Those families felt they
were being asked “to decide between life and death,”
as Mrs. Vinh’s daughter stated, as if those two notions
were equally weighted, as if “decision making” at the
end of life was either hoping the patient would return
to the condition she was in before the medical crisis
and thus not making any choice or, instead, determining that the patient should no longer live because her
condition was not valued and was not “life.” Those
are powerful meanings, and I was aware of them
often. They are very different from the reasoning of
health professionals. Although medical staff members
do not intend to put families in such binds, families,
as in these three examples, feel forced to weigh their
hope for some kind of recovery against the medical
team’s prognosis of the nearness of death. And then,
families feel pressured to authorize the death of their
relative by allowing the staff to discontinue the drugs
and machines. Giving permission for facilitating
death is sometimes, as in the cases of Mr. Thomas and
Mrs. Vinh, interpreted as causing death, as being
solely responsible for it. It is ironic that, in the hospital setting, families are the players with the least
knowledge—about disease processes, about the physiology of decline, and most of all about hospital rules
and policies—yet they are burdened with what seems
to them untenable responsibility. It is no wonder that
some families avoid making any decisions at all and
instead invoke the well-used phrases, “I’ll leave matters in God’s hands” or “wait for a miracle.” Health
professionals sometimes invoke that same language,
but for the opposite purpose, that is, when they want
to convince families to withdraw treatments.
These examples from ethnographic research are intended to ground the notion of “meaning” both in the
complex cultural worlds of persons who hold strong
feelings and ambivalent desires, and in the rules and
norms of institutions that guide medical practice in
the hospital. “Meaning” not only is located in the patient, but also resides in the family, in the health care
provider, and in the communication among them as
well. Its expression will emerge in negotiations about
care and about “the right thing” to do. What constitutes “the religious” or “the spiritual” may not be distinguishable from the articulation of moral convictions,
the murmuring of desperate hopes, or the expression of
fear and confusion. These examples show that the
broadly conceived yet sometimes abstract societal
ideal of “humane” dying may be challenged by actual
family perspectives—be they clear-cut or indecisive,
identifiable as specifically religious or apparently secular. They are one feature of how vulnerability at the
end of life is engaged and one expression of a variable
that contributes to the ways in which hospital deaths
occur. A useful strategy for health professionals concerned with making death “better” is to seek meaning
afterward, Mrs. Vinh was not doing well, although
she was receiving antibiotics, food, and morphine
through an intravenous line. She had not returned to
her previous physical condition and mental state as
the medical team and family had hoped. The various
physicians treating her wrote in her medical chart,
“end-stage care,” “dementia and chronic vegetative
state,” and “continued to deteriorate.” Mrs. Vinh’s
daughter expressed a different view, with its own ambivalence. She said, “My mother is a fighter. She
wants to live. I know this about her very deeply. All of
this talk about quality of life is not relevant. She
wants to live, even in this condition, that is why she
struggles to breathe so much, that is why they gave
her the morphine, to make her breathing easier. But, I
don’t know. I want her to live, but I want her to be
comfortable.”
The medical team was unanimous in wanting to
provide comfort care to facilitate a peaceful death
rather than continue to sustain the patient’s physiological existence. They assumed that Mrs. Vinh was
not conscious and knew she was at the end stage of
her disease. They saw no reason to prolong her dying
and perhaps be the cause of her suffering. Mrs. Vinh’s
physician and the hospital social worker called for a
family conference to see whether they could move
things along by talking with the family about withdrawing care and letting the patient die. At that meeting, which the patient’s daughter considered an attempt
at manipulation, she and her siblings responded to
the physician’s opening remarks by asking whether
the patient was suffering, whether she was conscious,
whether she was, in fact, alive and finally, what
“letting nature take its course” meant. The physician, an immigrant from China, answered each question thoughtfully as best he could, repeating that the
patient would die soon, probably in the next few
weeks, regardless of what they did, that she had no
quality of life, and that he would recommend stopping the intravenous feedings and antibiotics. The
complex message received by the family was first, that
they were keeping their mother alive, although it was
not a life and second, that it was their responsibility
to make a decision as quickly as possible about her
fate. Mrs. Vinh’s daughter, particularly, sensed enormous pressure from the health care team, especially
when the social worker asked the family how much
time they needed to decide either to withdraw lifesustaining treatments or to take the patient home
with oxygen.
Mrs. Vinh’s daughter said, “If we withdraw everything she’ll die—correct? She still has living brothers
and sisters. Maybe they’ll feel that isn’t right. That’s a
big decision. . . . This is a life and death decision.
You’re saying if we leave everything she’ll die slower.
If we remove everything she’ll die faster. I am ultimately the one who has to make a decision. We want
her home.” The pressure on the patient’s daughter to
decide something—but hopefully from the staff
point of view to withdraw life-sustaining treatments
immediately—was palpable in the small, airless conference room. After the meeting, Mrs. Vinh’s daugh38
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in its multiple end-of-life locations, which include the
life course and cultural world of the patient, the hopes
and moral understandings of the family, the convictions of health professionals about comfort care, and
the institutional pathways of treatment through
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Vol. 42, Special Issue III, 2002
Received September 17, 2001
Accepted May 10, 2002
39