Dying As Medical Performance: The Oncologist As Charon

Abstract

I think EVERYTHING in the universe is interconnected. And there are some interconnections we haven't been conscious of, and they'll come out sooner or later. Probably later, because knowing the AMA's grip on things, it's going to take a long time, and it's going to take a lot of people who aren't afraid to speak out for what they really believe in....a lot of people who are simpatico with this new way of living, with this wholeness of living.

Full text

Dying As Medical Performance:
The Oncologist As Charon
Megan Biesele and Robbie Davis-Floyd
In The Performance of Healing
Carol Laderman and Marina Roseman, eds. New York: Routledge, 1996:291-322.
I think EVERYTHING in the universe is interconnected.
And there are some interconnections we haven't been
conscious of, and they'll come out sooner or later.
Probably later, because knowing the AMA's grip on things,
it's going to take a long time, and it's going to take a lot
of people who aren't afraid to speak out for what they
really believe in....a lot of people who are simpatico with
this new way of living, with this wholeness of living.
-- Margaret Bell
Introduction
In November 1990 a 70-year old woman, whom we will call
Mrs. Margaret Bell, entered the hospital suffering from severe
dehydration following chemotherapy. She had been diagnosed
with colon cancer with metastases to the liver in July of 1990.
Having been admitted, she was convinced of her ability to
recover. Shortly after she left the hospital after a ten-day stay,
she became determined to die. By her own report, the
oncologist's words played a significant role in this
transformation. As she explained her experience, his
dramatically ritualized and repeated pronouncement of her
terminal status, reinforced by other aspects of her hospital
experience, eventually integrated itself in her mind as a
primary "failure" that added heavy symbolic weight to the
other "system failures" (of blood sugar and electrolyte
balance) she was experiencing. The terminal diagnosis quickly
came to form one primary piece of a new reality matrix--a
matrix that held her death to be imminent and her task not to
attempt further healing but to prepare herself for death.
In an interview, the oncologist primarily involved in her
treatment shed light on this transformative moment: he called

the task of announcing terminal status one of the central
responsibilities of the cancer physician. In fact, he identified
the doctor-patient interaction surrounding this announcement
and its reception as a main determinant of "a good death." It
was clear to us as observers that the physician, whom we will
call Dr. Henderson, had his most profound and anxiety-laden
communication with the patient during the three days it took
him to get her to accept the message that she was going to die.
This freighted communication stood in marked contrast to the
kind but brief and distant contacts the doctor had previously
had with Mrs. Bell during her examination and chemotherapy
sessions. The announcement of terminality seemed to be a key
performative element in the oncologist's ritual role.
This inquiry into the performed roles of oncologists has an
increasing number of parallel and complementary studies in the
anthropology of biomedicine. These studies, both articles and
books, deal centrally with issues of communication and
empowerment in the relationships among patient, physician,
and supporting others (Baer 1987; DiGiacomo 1987, 1992;
Fisher and Todd 1983; Good et al. 1990; Good 1991, 1993;
Kleinman 1988; Romanucci-Ross et al. 1983). In this article,
we address both the humane purpose behind proper
communication of the terminal diagnosis--helping the patient
to prepare herself spiritually and to make the best use of
remaining time--and the role this communication plays in
reinforcing the claim laid by the medical establishment to ritual
and symbolic hegemony over the bodily processes of life and
death.
Interviews with Mrs. Bell were conducted during her last
month of life and with Dr. Henderson, the oncologist primarily
involved in her treatment. Additional data come from intensive
observation of the patient and her interactions with others
during the five months between her diagnosis and her death
(1), and from conversations with several people, including
another physician involved in the case. Specific context for the
interpretation of interview data is provided by our observer's
account of a central episode--one of two hospitalizations--
during Margaret Bell's illness.
The Cancer Physician's Role in Technocratic Social Drama

The cancer physician plays a key role in the social drama
scripted by the interplay between the medically defined disease
he diagnoses, on the one hand, and the family affected by that
diagnosis and its sequelae, on the other. In cases considered
terminal, he is often called upon to perform not as healer but
as conductor to the other world. In the popular view,
oncologists as a class are alternately celebrated for their
willingness to play the part of the necessary "bad guy," the
bearer of the tidings of death, and condemned for their reputed
unwillingness to include the patient as part of the healing team
(Buckman 1986; Henriques et al. 1980; GIVIO 1986). Some are
further characterized as heartless technical automatons unable
to relate humanly to patients and families or as intent on
speeding the patient to an early death through self-fulfilling
prophecies (Siegel 1986). Still others, however, have come, in
the course of helping dying patients, to seem like
compassionate and competent conductors to the world of
death, performing the important role of lessening pain and fear
(Good et al. 1990). Because death is so often not only the
literal but also the symbolic--i.e., expected--outcome of cancer,
oncologists inevitably take on roles that carry ritual as well as
medical freight. A perception that Dr. Henderson's performance
encompassed aspects of the role of Charon, who ferried the
souls of the dead across the River Styx, occurred ineluctably to
us as close observers.
This last comparison illustrates a critical point. Despite
biomedicine's departure from shamanism, religious and
medical practices align themselves again when an unknown
such as cancer, and the fear of its outcome, is involved. Indeed,
until AIDS came on the scene, cancer reigned as the most
feared disease in America (Sontag 1990:16). We contend that
this unity of medical and religious roles is operative for cancer
doctors even where individual patients have histories of
personal religious practice to help them through the period of
dying. The symbolic and ritual dimensions of the cancer
doctor's role thus are subjects appropriate for analysis by
anthropologists. Mrs. Bell's experience illustrates the ways in
which these symbolic and ritual dimensions of the physician's
role can both enable the transformative process of dying and
reinforce powerful tenets of the American technocratic model.
As one of us has written elsewhere, the technocratic model of
life processes is an important part of the American core value

system which conceptualizes the human body as a machine,
giving primary responsibility for its repair and maintenance to
medical technicians (Davis-Floyd 1987, 1990, 1992). The
technocratic model expresses two key dualistic organizing
principles of American culture: the Cartesian separation of
mind from body, and the belief (growing ever-stronger in the
West from the Renaissance on) in the possibility and the
benefits of human separation from and control over nature,
including the body. The medical management of birth and
death are key phases in the development and reinforcement of
this model. For example, the rituals that enact this technocratic
core value system include the medical procedures through
which birth is conducted (Davis-Floyd 1992). Through powerful
and expressive symbols (e.g., the IV, the electronic fetal
monitor, the epidural) these rituals dramatically show the
birthing woman that she is not only separate both from her
baby and from her dysfunctional body-machine, but also
dependent on the institution's more perfect machines to
control the birth of her baby, society's product.
Likewise, a dramatic hospitalization experience focuses
enormous socialization pressures on an ill, and thus liminally
receptive, individual. It is instructive, then, to observe the
elements of performance used by the hospital team, as led by
the oncologist, in inculcating the patient with the core values of
technocracy and in aligning her own perceptions and models of
her illness and its meaning with those of the hospital staff.
These performance elements include the "strange-making"(2),
time disruption (Zerubavel 1981), and symbolic distancing of
practitioner from patient usual in hospital practice (Konner
1987; Stein 1990). In this particular case, they also included
other multivalent aspects of her experience such as being
awakened in the middle of the night three nights in a row to be
weighed, being left helpless in the bathroom until she almost
fainted, being kept hungry the night of her admission because
a salmonella epidemic had brought in a record number of
patients all at once, and feeling obscurely persecuted by the
staff for falling sick on a holiday (Thanksgiving).
Melvin Konner (1987) has written eloquently of the pressures
on hospital personnel that lead to such omissions and
discomforts for patients. But he also identifies such care-less
practices, which often are the rule rather than the exception in
American hospitals, as part of an intentional pattern of

socialization for medical students. He notes that during their
journeys of initiation (residencies), students learn their roles
as medical doctors from watching and imitating hospital
practice--its manners perhaps as closely as its techniques. Both
stem from the American core value principle of separation, as
the separation of mind from body is mirrored on a larger scale
by the separation of physician from patient. The messages of
the relative powerlessness and dispensability of the patient are
impossible to ignore.
The fact that most female patients are treated by male
physicians also has symbolic repercussions. The relatively
higher status of men in American society reinforces the drama
of the doctor's role for a woman patient in ways that are
further disempowering. In Margaret Bell's case the symbolism
was particularly poignant, as she had herself aspired to be a
doctor. But on the advice of a male medical school professor, in
her early twenties she settled on a career in medical
technology. She came rather quickly to the conclusion that
medical technology was second best to the primary medical
role she wanted, but then she contracted serious viral hepatitis
through her technology laboratory and felt set back too much
(both physically and through loss of time) to contemplate a full
medical school education.
These and other aspects of Margaret Bell's history worked to
ensure her profound socialization into the technocratic
biomedical model, bringing her to the 1990 hospitalization with
a predisposition towards a mechanistic approach to diagnosis
and treatment. Nevertheless, as a result of years of working for
a well-known holistically-oriented nutritionist, she had also
developed strong respect for the holistic approach to healing.
Where the technocratic model is based on principles of
separation and mechanicity, the holistic paradigm is based on
principles of interconnectedness and organicity (Davis-Floyd
1992, Chapter 4). This dichotomy set up a structural tension in
Bell's own life--a tension that also structured the drama of her
death. Yet in turn, this structural tension was ultimately
resolved through the manner of her dying, for she partly chose,
and was partly persuaded by her family, to live out her
remaining weeks at home in ever-deepening connection with
her family, and to die there. This resistance to the full
application of the technocratic model to her illness and death
(which might have resulted in the applying of "heroic

measures" in the hospital, and a lingering death hooked up to
machines) led the patient and her family to feel that she had
died "a good death" in spite of the disappointments
encountered in treatment--a judgment with which the
physician too eventually concurred.
Although her death in the end was, finally, a holistic one, along
the way she very nearly chose the much more technocratic
approach of retaining full control over the dying process
through consciously choosing euthanasia. This consideration
sheds further light on the symbolism of the oncologist's role. At
one point, when euthanasia was most seriously seen as a
viable option, his role as Charon seemed on the point of
actualization. Although in the end he did not actually "ferry her
across," it seemed clear to us that his perception of his role
was informed by ancient models transmitted to him through
centuries of Western literature and art and subtly codified in
medical school pedagogy regarding the treatment of dying
patients. There was an old, sure inevitability about the
dramatic performance by this young doctor that went far
beyond his physical treatment of the illness. Exploring how
these ancient models were used in the service of modern
American values will be a primary thematic concern of our
article.
We will also ask how symbolic analysis can point the way to
dynamic new uses of the power of symbol and drama. We
suggest that medical paradigms may actually be challenged by
restructuring performative models. This is in fact the sort of
challenge to the medical establishment presented by
contemporary holistic healing philosophy and practice.
Holistically oriented medical practioners and writers like
Norman Cousins (1979, 1989), Bernie Siegel (1986), and
Simonton et al. (1980), emphasize empowerment of the
patient; the social support of friends and family; and good
communication among doctor, patient, nursing staff, and
religious practitioners. Most significantly, these writers
promote dramatic visualization and relaxation techniques to
enhance mind-body integration and redefine negative
expectations positively. Though few such practitioners are
anthropologically sophisticated, what they advocate amounts
to a return to concepts of traditional healing and shamanism in
which religious and medical healing work is united by

practitioner and ceremony and the healing energy is readily
available to all participants (Katz 1982).(3)
Case Study: A Central Episode in the Drama of One Death
Margaret Bell was born in 1919 and grew up in a family that
encouraged and enabled her to pursue a college and post-
graduate level of education. But the value placed on her
education, although high, was not as high as that placed on the
education and careers of her brothers. This discrepant
valuation was consistent with American historical forces during
her formative decades, and is unremarkable except that her
family did transcend the general ethos by allowing her to
attend a university and work away from home. Her medical
career was similarly unremarkable for a woman at that time:
having been channelled into medical technology by a
professor's remark, the commitment of time she had made to
that career would most probably have kept her from full-scale
medical education even had she not contracted hepatitis.
Notwithstanding her professional marginalization, Bell was
active in the early work on the Rh factor in blood ("A technician
walking the rhesus monkeys," she used to fume) and for many
decades in the biochemistry of nutrition, she worked hand in
hand with physicians and nationally known researchers on the
discovery and testing of new vitamins and nutritional
therapies. Her academic and career experience on the sidelines
of male achievements led her into active promotion of
"continuing education for women," before the advent of Betty
Friedan and the women's movement. Her three daughters
report that, due to their mother's example, they were
privileged to experience not a moment's worry over whether
their own academic and career aspirations were as worthwhile
as any man's. Until her cancer diagnosis at age 70, Margaret
Bell still worked every day in a groundbreaking nutritional
therapy clinic associated with a biochemical research unit in a
major university.
As anthropologist Susan DiGiacomo, herself a cancer patient,
has noted:
Biomedicine as commonly practiced in the U.S.
simultaneously individualizes its treatment of
disease symptoms and routinizes dealings with the

patient, so that the afflicted person is transformed
from an integrated and fully functioning adult to a
collection of diseased body parts. Further,
biomedical opinion holds that sick people are less
than fully competent adults simply by virtue of being
physically unwell. The first difficulty of the patient,
then, is not getting a fair hearing for his or her point
of view concerning the illness and its treatment; it is
getting the doctor to recognize that the patient, has,
in fact, a point of view at all...Thus, from the outset,
the afflicted person is required to accept a reduced
and defective patient self constructed for him or her
by the doctor (1988:4).
Accordingly, when Margaret Bell became a patient, her lifetime
involvement in medical science and therapy was suddenly of no
consequence to the decision-making associated with her
treatment. She was immediately demoted to passive status by
the hierarchically structured routines and rituals of her first
oncologist's practice (he was later dismissed by Bell and her
family in favor of Dr. Henderson). Moreover, in spite of Bell's
desire to try it, this first cancer doctor refused to consider the
relatively new interferon therapy as an adjunct to
chemotherapy in Bell's case (surgery and radiation had
previously been ruled out).
Mrs. Bell's husband, Dr. James Bell, taught cell biology and had
done pioneering research in cancer chemotherapy and electron
microscopy early in his career, yet he was similarly sidelined by
the ritual unapproachability and unquestionable aura of
authority with which the first doctor surrounded himself.
Sidelined and passive they remained during the first
frightening weeks after Mrs. Bell's diagnosis until their eldest
daughter arrived home. Strongly oriented towards a holistic
philosophy and a feminist stance, this daughter immediately
began to push for better communication with the physician,
and soon Mr. and Mrs. Bell began to feel as if they had a right
to be included on the healing team. At that time, through the
help of a close friend, the family contacted Dr. Henderson, who
agreed after evaluation to provide a new combination therapy
of chemotherapy and experimental interferon on a twice-
weekly basis--a treatment that was being successfully used in
another city by a colleague of Henderson's on cases like Bell's.
This colleague, whom we call Dr. Abdul, had also evaluated

Margaret Bell and was glad she was able to find a physician in
her own town to administer the treatment.
Bell and her family settled into a routine of chemotherapy ups
and downs with the familiar good and bad appetite days of the
week. The mood for some time was very positive, as Bell was
absolutely determined to combine excellent nutrition, exercise,
and positive visualization techniques to help her body and mind
work together to fight her cancer. She was surrounded by an
extremely supportive group of friends and family. Her primary
caregivers soon welded themselves into an efficient team,
working hard to leave no stone unturned in investigating the
latest research about colon and liver cancer, preparing
nutritious meals, ensuring the patient's rest and comfort, and
providing both diversion and loving concern. And for several
months the medical news was positive, as Margaret responded
well to the combined therapy and did not experience undue
discomfort. This scenario seemed to all concerned to be a
healthy blend of the biomedical and holistic approaches, with
each complementing and working to enhance the positive
effects of the other.
Sometime in October, however, the side effects of
chemotherapy began to take their toll. Also, the indicators of
tumor activity reversed their hopeful downward trend and
began to rise again. Although Margaret pursued her program of
daily swimming and walking, and although each meal was
carefully planned and prepared by her family, her health began
to go downhill. By the end of November she became
dehydrated from uncontrollable diarrhea, and, at the family's
suggestion, with which Dr. Henderson concurred, she entered
the hospital to have her fluid balance corrected. She was
admitted on her 71st birthday, November 20, 1990, just before
Dr. Henderson left town on his Thanksgiving holiday.
When admitted, Margaret assumed she would be in the hospital
for a few days and then resume her program of combined
interferon and chemotherapy. As it turned out, she had an
exhausting ten-day struggle in the hospital to regain physical
equilibrium. This struggle was not made easier by the fact that
for the first crucial days she was seen exclusively by medical
students and doctors unfamiliar with her history. Also, it
became clear through routine tests that an incipient diabetic
condition was beginning to give trouble, and insulin was

started. It took some time for the dosage to be regularized, and
during this period Margaret's weakness and instability dictated
that she remain in the hospital.
After her first night, which taught her and her family that she
needed more constant care than could be provided by the
nursing staff, her daughters took turns sleeping on the floor, so
that they could help her to the bathroom, make sure she was
comfortable, and run interference when there were
unreasonable staff interruptions of her sleep, such as the 3
A.M. weighing sessions. (As Zerubavel (1981) has
demonstrated, time in the hospital is organized to fit the needs
of the staff, not the patient.) There were also difficulties with
her IV line which made her family feel that she needed more
than ordinary supervision.
Many of the interruptions took the form of what seemed to the
family to be a kind of "hazing" of Mrs. Bell as a patient. For
example, a male nurse exhibited total disregard for the pain of
a chemotherapy rash on her hands, grasping them roughly
after she had begged him not to, saying "Of course it doesn't
hurt!" The rapid turnover of staff, which meant that each new
nurse who came on the ward had to be familiarized with her
weaknesses and special needs, gave her and her family a
profoundly uneasy feeling that it was "us against the world" of
the hospital. Some nurses seemed friendly and compassionate,
but more were bored, indifferent, condescending, and even
hostile. Especially upsetting was the sense the patient felt of
being punished for having "difficult veins." Every time one of
the nurses had a hard time replacing the IV line, an expert was
called in who brooked no failures and whose very stance
bristled with disapproval and censure. A huge woman known to
the family as "the IV nurse from hell," she struck terror into
the hearts of all, looming as a truly frightening possibility every
time a change in IV had to be made.
Socially, Mrs. Bell's hospital stay was all that could be desired.
She was never left alone for more than a few minutes, and
when she was napping there was a vigilant family member on
guard outside her door to request visitors to come back
another time. When awake and feeling well enough, she gladly
received many visitors, as well as a wallful of cards and a
roomful of flowers and gifts. Though she realized she had had a
serious setback, she assumed that she was on track with her

original plan of treatment, and was determined to keep right on
listening to her visualization tapes, reading Bernie Siegel,
taping her memories for her daughters, making lists of gifts to
give at Christmas, and anticipating how good it would be to get
back to home cooking after the boring hospital food. She
greatly enjoyed visiting with her daughters, who clearly had all
inherited their mother's ability to see humor in adversity. By
the time Thanksgiving was over, her room was quite the party
place on the oncology wing.
Thus it came as a shock to hear from Dr. Henderson on Monday
when he returned from his holiday that there would be no more
treatment. After examining her and reading her charts, he told
Margaret without preamble that "resistance had developed,"
that she couldn't handle the treatment, and that there was
nothing else known that could help her.
This was Act I in a dramatic three-day attempt to get Mrs. Bell
to accept the "fact," as Dr. Henderson saw it, that she was
going to die. On this first day, the stage as one of us (Biesele)
observed it was set as follows: the eldest daughter sat on the
window ledge at her mother's bedside. The doctor sat slumped
in a chair in the furthest corner of the room, his posture
suggesting both earnestness and a lack of ease. Mrs. Bell and
her daughter became suddenly anxious, both because they had
waited six tension-filled days for this particular doctor to
answer some questions about acute problems that had
developed in the hospital, and because this was the first time
in their three-month association with him that they could
remember him actually sitting down with them. (His earlier
talks had been careful and calm, not lacking in communicative
mutuality, but he had conducted them on his feet, while
examining Mrs. Bell on a raised table, for instance, or passing
by in the hall while his nurse administered chemotherapy.)
After briefly discussing her blood sugar and dehydration
problems, Dr. Henderson said that Margaret Bell was "in a
terminal phase." He said that she would be getting no more
chemotherapy because of the resistance, as seen in the
elevated CEA level (a blood indicator of tumor activity) and on
the CT scan, which revealed no appreciable shrinkage of
tumors. Mrs. Bell drew herself up with what dignity she could
muster, and said that she accepted the diagnosis but did not
consider herself "terminal." She said that she was still fighting.

The daughter by her own admission was "glaring" at the doctor
and silently applauding her mother's spirited answer. Mrs. Bell
then asked the doctor, with a sourness quite uncharacteristic of
her, whether he thought nutrition could play a role in healing.
The unwillingness of the medical profession to consider
nutritional approaches had been a long-time sore topic with her
both professionally and personally, so when Dr. Henderson
answered with the single word "No," the atmosphere became
very quiet--and very charged. Mrs. Bell said, "Then that's all I
have to say to you for now," and Dr. Henderson stood and went
out the door.
Early the following morning he returned for Act II. He seemed
more rested than the previous day and quite energetic, like a
person who knows he has a job to do and feels equal to the
task. He said clearly that she was "terminal, and that isn't
necessarily bad. One can prepare oneself for death." Mrs. Bell's
response surprised even her daughter, who (though she had
long ago thrown in her lot with the self-healing philosophies
and had been listening to the personal empowerment tapes
right along with her mother) thought that by now the diagnosis
of terminality was quite clear. "What I want to know," said
Mrs. Bell, "is how are you and Dr. Abdul going to build me up so
I can continue chemotherapy?" Dr. Henderson appeared to
realize at that point that Mrs. Bell and at least some of her
family were still reacting at that point with denial, and he just
left it. Indeed, her daughter said that "It was as if she had not
heard what he said." Before he left the room, Mrs. Bell
requested a look at the CT scan taken a few days earlier and
the addition of a vitamin C infusion to her IV bottle. Dr.
Henderson quietly agreed to both requests and departed.
Later that day, when Dr. James Bell was sitting with his wife,
Dr. Henderson returned with the CT scan of her abdomen. In
technocratic diagnosis, the CT scan, as external, "objective"
evidence obtained by tests and machines, constitutes a
defining source of "authoritative knowledge" (Jordan and Irwin
1990), that is, knowledge that forms the basis for decisions
made and actions taken. It was apparent that the liver was
largely taken over by tumors. The nursing staff did add an
ascorbic acid solution to the IV, though at a much lower
percentage than that recommended by Mrs. Bell's nutritional
therapy colleagues. Mrs. Bell spent a quiet afternoon listening
to her husband read to her: her eyes were bothering her and

reading was difficult, though it never had been before. She
seemed untroubled by this annoyance.
Meanwhile, the family "cheering squad" (as they called
themselves) went into action and rallied around the telephone
checking out every possible lead. Much of the activity centered
around the question of whether Dr. Adbul in the neighboring
city concurred with Dr. Henderson's assessment of
"resistance." When at last it was ascertained that he did, and
had in fact already told Dr. Henderson that further treatment
seemed counterindicated, Mrs. Bell's daughters began to
confront for the first time the probable reality that their mother
was going to die. This is how the stage was set as Dr.
Henderson and Mrs. Bell went into the last act in their joint
drama: acceptance of terminal status by the patient.
Early on Wednesday morning, when Mrs. Bell's middle daughter
was with her, Dr. Henderson came back a third time. Mrs. Bell
asked him what treatments she would be getting when she got
out of the hospital. The question was in the context of possibly
continuing Vitamin C infusions via a periodic IV drip. He said,
"I'm not recommending any. It's important for you to not just
keep trying quackery but to think about your death." Margaret
then said, "Oh, so you're saying I'm really terminal?" Dr.
Henderson replied, "You've been terminal since you got your
diagnosis in July."
Later the middle daughter encountered Dr. Henderson in the
hall, and said "She's finally accepted it." He said, "I was
beginning to get worried."
On the afternoon of the same day, when the eldest daughter
was with her mother, Dr. Henderson again came in and
repeated for a fourth time that she was terminal. It was as if he
needed to reassure himself that she had indeed accepted her
status. And perhaps he also wanted to make sure that the
eldest daughter, who had been the primary caregiver, had, like
her sister, accepted it too. To this eldest daughter, it seemed as
though her mother was behaving as if she were receiving the
news for the first time. When the doctor left, Mrs. Bell said, "I
wish he'd told me before, so I could have gotten my study in
order." The daughter, who later said that leaving a chaotic
study behind after her own death had always been an uneasy
thought, began to feel guilty for her own part in promoting--

perhaps overpromoting--the stance of positive resistance to a
grim prognosis. Had she robbed her mother of enough time to
put her affairs in order? If the doctor had "known" her mother
was terminal ever since her diagnosis, had her own positivism
kept him from informing the family until now?
Yet the family remained open, even after that third day, to any
desire Mrs. Bell expressed to try alternative therapies in
keeping with her nutritional convictions. Dr. Bell and the eldest
daughter made an appointment with Dr. Henderson on
Thursday morning, largely for the purpose of obtaining his
blessing on such alternative therapies. He agreed readily, but
repeated that she was terminal and all that was realistically
left as an option was "symptom management." The daughter
asked whether great pain was to be expected or rather a quiet
death from liver failure. Dr. Henderson said the latter, and that
it would be relatively "comfortable."
Finally Mrs. Bell's condition stabilized and she asked to end her
ten-day hospital stay and go home. In the days that followed
her discharge from the hospital her family continued to strive
to balance her diet and regime of care with her ever-more-
complex physiological needs. She went by car and wheelchair
to the one doctor in town who would agree to provide the high
concentration of Vitamin C infusions she wanted to try. These
infusions, along with the soothing atmosphere of this "New
Age" doctor's clinic, had a restful and apparently cleansing
effect on Mrs. Bell's state of mind and body. But by about mid-
December even this doctor was unable to find a vein capable of
holding a needle, and he suggested that it would be best to
"take a rest and come back after Christmas." This news was
received gravely by the whole family. Mrs. Bell began another
alternative therapy she learned of through the nutrition clinic,
one she could take at home orally, but this time she seemed to
act without conviction. In the oral history her daughters had
been recording for some months there suddenly appeared the
motif of acceptance of death.
At this time, one of us (Davis-Floyd) asked to move beyond the
observer's role, to formally interview Mrs. Bell about her
current experience. This interview turned out to be decisive.
With her main caregiver, her eldest daughter, absent, Mrs. Bell
was able to speak without hesitation about her readiness to
die. She spoke of having no fear of death, only of the messiness

of dying and the burden she was putting on her family.
Reaching over and emphatically tapping the anthropologist's
tape recorder, she said repeatedly "If I could, I would just
push this button and turn myself off." She confessed that she
was only continuing with the latest alternative nutritional
treatment to please her family and her community of
holistically-oriented friends. After saying this in an interview,
she found the courage to say it to her friends and family as
well. (As the anthropologist left, teary-eyed, the eldest
daughter asked her at the door, "Are you telling me it's time to
stop cheerleading?" and the anthropologist answered "Yes.")
Sometime between her discharge on December 2 and the
interview on December 21, Margaret Bell had completed the
process of cognitive restructuring that accompanies all lasting
major perceptual shifts (d'Aquili et al. 1979; Laughlin et al.
1990); in other words, her cognitive system had reconstellated
around the diagnosis of terminality. (When asked in the
interview what were the deciding factors in this process, she
answered that it was the combination of seeing the CT scan
and the many repetitions by the doctor that she was terminal.)
In the days following the interview, her behavior consistently
expressed the thoroughness of this process of cognitive
restructuring. Her clear-eyed acceptance of death's inevitability
enabled her family too to relax into the next phase. Said one
family member, "It was as if the whole house stopped fighting
and gave a sigh of relief."
The routines of care did not cease, but they were carried out
under a different aegis, that of easing a loved one the best way
possible into another life. Norman Cousins died at this time,
and though they found that "very sad," it did not cause the
family the consternation it might have a month before. No
longer was Bernie Siegel read in the house; his new videotape
arrived and remained unopened. Instead, family members took
turns reading from books about near-death experiences and
what they can teach us about "the other side." Mrs. Bell found
it soothing to hear this sort of thing read to her before she
napped.
The oral history was completed with all that she found
important, and was transcribed by a family friend. The rituals
of Christmastime, particularly caroling and church music, were
brought to the house by the choir in which Mrs. Bell had sung

for twenty years. Mrs. Bell talked more and more often of the
plans for her memorial service, and Christmas music figured
prominently in them.
At this time too, Mrs. Bell told her eldest daughter, and some of
her friends, of her interest in euthanasia. She had a conviction
of its rightness in "hopeless cases" (her words) like her own,
and even a vision of its aesthetic potential. She spoke about
this with conviction with the clergyman she had chosen to
conduct her memorial service. In general, people were awed
but respectful of her views. Shortly before Christmas a good
friend close to medical networks made the family aware that
Dr. Henderson himself was not unwilling to discuss the matter.
Mrs. Bell made an appointment to see him, saying that she had
just enough strength to leave her house one more time.
In the end, after this consultation, family debates, and a pivotal
conversation with a compassionate woman doctor/friend, Mrs.
Bell's decision was made in favor of her family's peace of mind
and legal safety. But she had made her convictions fearlessly
known. And through the discourse surrounding this decision
she finally came to terms with allowing herself to be taken care
of to the end, at home, by her family (who firmly desired that).
Throughout, she insisted that heroic measures never be taken
on her behalf and had filed a "Durable Power of Attorney for
Medical Care" under Texas law with her lawyer and her
physician. Her desires were honored, and after last visits from
virtually everyone she wanted to see, she died peacefully at
home on Jan. 1 with her eldest daughter by her side.
But the debate about euthanasia nevertheless illuminated the
symbolism of choice and empowerment involved in the dying
process. Margaret Bell had resisted her dismal and eventually
terminal prognosis stoutly. Only twice during the difficult five
months she lived after her diagnosis did she give in to brief
expressions of dismay when anyone else was around. She took
just as positive an orientation toward her death once she had
accepted its inevitability:
It's that I'm a realist, and I know enough about
what the body does under different circumstances to
be able to see myself going down day by day, in the
strength department and in every department--my

eyes are really bad...I'm a realist, and I call things
as I see them.
Partly this attitude was connected with Mrs. Bell's unstoppable
research orientation. She was interested in monitoring her
condition up to the last in order to understand it, even to the
final phases of systemic breakdown. She said that she found
the ways in which her vision was distorted at the end, for
instance, "captivating to watch. It doesn't bother me that I
can't read any more." The existence of the euthanasia option,
she said, means that one doesn't have to be afraid of carrying
this learning process so far that one's quality of life becomes
intolerable.
Dr. Henderson and Mrs. Bell:
A Contrapuntal Dialectic Between Philosophy and Performance
In a telephone conversation with Mrs. Bell's eldest daughter
after the last office visit, Dr. Henderson opened the topic of his
own understanding of Mrs. Bell's views on euthanasia by
saying, "I know what she wants--she wants to exit stage
right." The performative reference of this statement, combined
with the discovery that Dr. Henderson was working toward a
doctorate in philosophy in order to pursue a strong academic
interest in the ethics of euthanasia, led us to request a formal
interview with Dr. Henderson.
The interview was conducted a week after Mrs. Bell's death.
Early on, Dr. Henderson had remarked, "Dying is not something
that happens to you. It is still something you can participate
in." It quickly became clear that Dr. Henderson was committed
to the social support of the dying in a profound way, and that
he found his own niche as a cancer doctor to be just there,
defining the limits of science clearly so that patients could
prepare themselves for their deaths by completing their
connections with life. What galvanized him was practicing
"medicine," which for him included taking full responsiblity for
"taking care of them until they die" as opposed to surgery,
which he said was "just slice-of-time oriented....where you do
not have to take care of the whole patient, where you are

either successful or not in that limited slice of time. It does not
seem to be as rewarding."
He said that medicine, as opposed to surgery (4), "should be
good at knowing when the battle is lost and you need to
change directions and provide some comfort....It is trying to do
everything you can and still be the court of last resort for a lot
of people." A period of practice in a small Mennonite
community had helped form his outlook in this regard: he
characterized it as a community with "no loss of
connection....The diagnosis of cancer was a signal that
someone needed to be taken care of and hardly anyone went
out of this little community to be taken care of." He went on to
say that had he been in a big city he would have continued in
academic medicine--doing hematologic cancer protocols, etc.
"But I don't think I would have been as satisfied as I could be
now because academic communities are so disjointed from the
community of the patient that you can't provide total care. All
you can do is provide heroic care." He preferred, he said, that
there be "some look over the long term even if it's only a
couple of weeks. I'm not here to say well, I have nothing to
offer you and you need to go someplace else." It was clear that
the "long-term look" and "total care" meant for this doctor
something different from what such terms might mean coming
from a family pediatrician, for example. They had a great deal
to do with mediation of the dying process once curative
medicine had reached acknowledged limits. In Mrs. Bell's case
it was clear from the way Dr. Henderson went into action at the
time of his announcement of the diagnosis of terminality that
his sense of his role was centered just there--an observation
confirmed by his own words in the later interview:
What the patient's whole life is has a lot to do with
how they are going to live the rest of their life. Some
will be satisfied with facing the end of treatment and
some won't. They will want to do other things....The
greater likelihood a patient has of being cured the
more adamant I am about trying to get them to take
chemotherapy. But if there is no cure rate we are
really just talking about quality.
Dying is an event we all have to go through and it
seems to me you are shortchanged if you don't
[have the chance to] do the things you would regret

not doing if you didn't know about it... You look at
what you have to leave people. And that is all you
can do. You leave something. You leave whatever
you do through your connections....
So, I do believe a lot can be made of the death. It
can be a good death. [But in our culture] it has been
hidden. It has been suppressed by medicine.
Medicine has held out a hope that has been
unrealistic....People still die...too often in the
hospital, too often not aware of what has happened
to them. And they are older, and separated from
their families. It's partly medicine and it's partly
society.
Asked how he thought modern physicians--particularly
oncologists--might help alleviate this problem in the social
dimension of dying, Dr. Henderson said, "You have to develop
some kind of philosophy that allows you to...get into
somebody's life, to participate in someone's life...". But he
went quickly into the difficulties this approach involves for
physicians:
There are certain penalties you have to pay for being
connected. One of them is that you will have feelings
for a person, whatever happens to them. On balance
that is okay...but it's just not easy sometimes. I
can't see not doing this but I can see doing less of it.
It is where I keep contact with what happens. I'm
not sure it's a strength. It's just something I
do....The greatest amount of suffering in someone's
life may occur toward the end of that life so there is
a need. And filling that need is what I feel fairly
comfortable with. It's a good sense, you know. You
get reinforced every now and then. We have had
people who have had good deaths and we have
participated in that to some degree. I think people's
lives are better for that--it's just not as dramatic or
visible as getting your appendix out. So there is
reinforcement. There is a commitment to helping
people at that time in their lives.
When asked about the limits he had to set in order to keep on
doing this difficult thing, he responded that the main limit was

an adherence to scientific facts. He named these same
scientific limits as a source of occasional escape from the
personal emotional pressures of oncology. He called clinical
medicine
a detective game requiring...understanding of the
whole patient....I took a hematology/oncology
rotation when I was a senior medical student. I
don't know why I was particularly struck by it
except that it was exciting medicine. You could make
diagnoses right away just by looking at blood
films....Hemologic malignancies: it's intellectually
challenging. There are obscure diseases like certain
kinds of anemias--interesting. Sickle cell disease is
the best-defined genetic disease there is...So that is
scientifically pure to some degree. Some of the
hereditary anemias and some of the clotting
disorders are almost pure science. You can see a
defect and you know what the molecular effect is
and you can follow it all the way up to what happens
on the physiological level. So that's fun and is a good
foil for some of this other stuff. A relief. I enjoy it
and it's fairly simple. There are some sophisticated
tests you can do but still you don't always need an
NMI scan. You can just look at the blood and take a
person's history and physical exam, so it fits
together well for me. However, a lot of the
hemologic diseases are fatal.
At almost every point in the interview, as here, the narrative
arrows, returning, pointed toward death. As this was clearly a
focal point in Dr. Henderson's perception of his role, we asked
how his medical school training had prepared him to handle it.
He answered that in medical school "it's not as intense since
you are not the one who is primarily responsible....Now I find
since I am primarily responsible for patients that it has become
difficult, an emotional effort, to help people die." The age limit
he placed on his practice was born of hard experience with
himself: "I couldn't stand to see kids die. I couldn't stand to
deal with their parents. It was just overwhelming--it was just
too much for me. I just couldn't stand to see children who were
terribly disfigured and disabled, probably because I didn't
know enough."

He also admitted limitations in the area of interacting with
patients, speaking admiringly of "Sandie," the nurse who
administered chemotherapy in his clinic. "She's wonderful. She
is a buffer for me: she has much more physical contact with the
patients." He surprised us by saying he had found her by
placing a personal ad for a cancer clinic nurse. Sandie seemed a
highly approachable pillar of human strength, performing
routine chores and tests with the outpatients which clearly
would have taxed Dr. Henderson beyond his specialist's role.
She "ran interference" with a vengeance, making it virtually
unnecessary for Dr. Henderson to have contact with patients or
families as often as was usually necessary during the course of
chemotherapy. We talked with her and found that she
connected her own ability to do what she did with her
experience in taking care of a father who died of cancer.
In a recent study of American oncologists, Good et al. (1990)
find that these oncologists perceive themselves as mandated
"to instill and maintain hope." In contrast, in Margaret Bell's
case, both Sandie and Dr. Henderson seemed to have
developed into professional hope-withholders. They worked in
structural symmetry: Dr. Henderson ran interference for her
(as she for him) by acting out his role as the scientific arbiter
for treatment decisions. However, he was somewhat
"unavailable" (at least on Mrs. Bell's twice-weekly session
basis) to discuss the case as it progressed. Sandie herself could
be asked questions at each session, but the answers took time
to come back, as most of them had to go through Dr.
Henderson. By the time the answers did come back, the original
impetus for the question had often faded and the emotional
charge lessened, making Sandie's "patient contact" less trying
for her than it might otherwise have been.
Meanwhile, Sandie performed the maintenance and treatment
tasks routinely, and this in itself was patient therapy, as it at
least acknowledged the ongoing physical needs of the patient.
The performance aspects of Sandie's job made it highly
didactic: her kind but businesslike demeanor conveyed, more
clearly than words could, what kind of job she saw herself
engaged in. It was, like Dr. Henderson's job, one of facilitating
dying more often than fostering life. She silently taught the
patient and family what their job was too.

Sandie's lesson at first was not easily absorbed by the Bells.
Mrs. Bell was distressed that she was not able to discuss with
Sandie or Dr. Henderson the holistic healing philosophy that
was animating a whole other side of her self in her struggle
against her disease. She and her family were shaken by the
realization that in the entire oncology profession of their large
city they had been able to discover only this single young
doctor willing to administer an experimental treatment
combination, but that even he stopped short of enthusiasm for
"mind-made health." They were uneasy with the split between
home, where one could take a hand in one's own healing, and
clinic, where one could not. It wasn't that their holistic views
were overtly denigrated in the clinic, but rather that the
atmosphere at the clinic allowed them no conversational room
to even bring up the philosophies of Bernie Siegel and Norman
Cousins.
Characteristic features of biomedicine as described by a
number of social scientists include a hierchical physician-
patient relationship in which the physician protectively
contains his authoritative knowledge within the community of
biomedical practitioners, doling out small pieces of information
to the patient while maintaining a general unwillingness to
share this knowledge and information (Fisher and Todd 1983;
Jordan and Irwin 1990; Klein 1979; Lyng 1990). Susan
DiGiacomo (1987) poignantly describes her five-year struggle
not only with Hodgkins Disease but also with the resistance her
physicians demonstrated toward keeping her fully informed. An
anthropologist and PhD candidate at the time of her initial
diagnosis, she desired a collegial relationship with her
physicians in which knowledge and information would be
shared and treatment decisions mutually decided upon, while
they sought to enforce a strict hierarchy in which she would
follow the treatments they prescribed without asking too many
questions. So pervasive is this approach in biomedicine that
Stephen Lyng, in envisioning an ideal "countersystem,"
suggests that in such a system, "the practitioner's primary role
would be educational, while the patient would assume primary
responsibility for selecting a diagnosis and treatment regimen
from among the various alternatives presented" (1990:61).
Like DiGiacomo, throughout the course of her illness Mrs. Bell
keenly felt the disjuncture between the technocratic approach
to healing and her own. This sense of disjuncture was

intensified by her personal lifetime commitment to the idea of
nutritional support for the immune system. She had doubts
throughout the course of chemotherapy about whether she
could fruitfully discuss nutrition with either her doctor or her
nurse, doubts that were finally confirmed in the hospital during
the dramatic announcement of terminality. The question she
blurted out, "Do you believe that nutrition can play a role in
healing?" was one she had been longing to ask for months, as
the answer would precisely define the limits of their system of
shared beliefs. Dr. Henderson's flat "No" cemented the
disjuncture, making impossible any kind of conceptual
reconciliation between Margaret Bell's own beliefs and those of
the medical personnel treating her, ultimately augmenting her
sense of hopelessness.
In other words, although Mrs. Bell and her family continued to
pay every good attention to her diet, the sense of dissonance
created by the total devaluation of this practice by the medical
profession intensified her alienation from a part of herself. In
Kleinman's (1988) terms, this situation constitutes a failure of
conversation, a failure of the healer to empathetically enter
into the patient's own discourse concerning her lived
experience:
Of all the tradecraft of the physician, nothing more
effectively empowers patients. The very act of
negotiation, if it is genuine....necessitates that at the
very least the physician show respect for the
patient's point of view. The real challenge is for the
physician to engage in negotiation with the patient
as colleagues involved in care as collaboration. The
practitioner begins this phase of care by elaborating
an explicit comparison between the lay model and
the professional biomedical model. The physician
can determine points of disagreement....he must be
prepared to hear out their criticisms....he must
expose his uncertainty and the limits of his
understanding, as well as his critical reaction to
relevant popular and commercial images....The
negotiation may end up in a compromise closer to
the patient's position, a compromise closer to the
doctor's position, or a joint lesson in demystifying
professional and public discourse. (Kleinman
1988:243)

Such a joint lesson in demystification was precisely what Bell
was longing for. The psychological trauma of her illness
experience stemmed from the ultimate and total lack of this
kind of mutual negotiation, which she experienced as an
extreme philosophical tension and and ultimate putdown--a
powerful argument in support of Kleinman's conversation-
centered approach to healing.
It was not until after Mrs. Bell's death that anyone involved in
the process was to hear Dr. Henderson speak the word
"holistic." During our interview with him, Dr. Henderson spoke
favorably of humanizing trends in medicine's approach to death
stemming from the hospice movement and a "network of
holistic medicine." Yet two of his main judgments about holistic
medicine were decidedly negative:
If you ask, "Do these [alternative treatments] have
a function for the patient?" the answer is that they
do. They provide a level of proof that no matter what
they do this disease is not going to go away....One
study in the New England Journal of Medicine
showed that non-traditional and traditional
treatments had the same success rates. The proof
is...the lack of effectiveness, the fact that they are
going to die...It is a proof of mortality, basically, and
there is nothing we have that will rescue them from
it. (5)
At one point in the interview, Henderson added,
I think people do get the idea that what [Siegel] is
saying is that if you can think about it you will get
better, if you will it enough, when in fact this is not
the case. In fact, that gives even the wrong meaning
in that you end up with patients who blame
themselves for their disease, which is just entirely
wrong.(6)
This potential for creating guilt in patients, he said, together
with holistic healing's mindless positivism (which he
characterized as "ice cream sundaes") obscures the real
message:

What Siegel is saying is that whether you have a
diagnosis of a cancer or not, that should not keep
you from living your life. There are still things to do,
and [you] may be able to tune into the connections
you do have. Relationships are still important,
maybe more important....[And Siegel] is
emphasizing the emotional content by shaving his
head to be sympathetic with those patients having
chemotherapy, hugging his patients, and being in
contact, sharing their feelings.
There was a certain wistfulness detectable in Dr. Henderson's
acknowlegment of his own very different orientation to patient
treatment, as he noted, "I haven't come to that point...I just
recommend hairpieces instead."
This acknowledgment points up the structural tension in Dr.
Henderson's own working philosophy--fascinatingly, the same
tension that structured Margaret Bell's experience of illness
and death. In his own words, he values connectedness and
seeks for patients to be connected with both their families and
himself. Yet his orientation to diagnosis, treatment, and
interaction with patients is highly technocratic; his words
express, and his behavior enacts, a more-deeply held valuation
of distance and separation. The pure science of complex tests is
"fun," "a relief" from the strain of human commitment. And
although Dr. Henderson verbally expresses human commitment
both to patients and their families and in professional writings
and talks, he does not physically enact this commitment
through companionship, or conversation, or head-shaving, or
loving touch. In other words, he does not engage patients in
two-way explorations of the experience or meanings of their
illnesses.
In this, he is not alone. As Arthur Kleinman notes in The Illness
Narratives, at the heart of healing lies the potential for a
powerful dialectic that can draw the practitioner into the
patient's experience and so can make of illness and treatment a
rare opportunity for moral education. But instead, the modern
medical care system
does just about everything to drive the practitioner's
attention away from the experience of illness. The
system thereby contributes importantly to the

alienation of the chronically ill from their
professional care givers and, paradoxically, to the
relinquishment by the practitioner of that aspect of
the healer's art that is most ancient, most powerful,
and most existentially rewarding. (1986:xiv)
Charon's Discourse:
A Conversation-Centered Approach to the Issue of Euthanasia
Participation in dying through consciously living the last
months or days of life seemed a cornerstone of Dr. Henderson's
philosophy, whether he was referring to his own or to more
holistic approaches. It was of a piece with his attitude toward
euthanasia, though this attitude was far from simple or
completed in his mind. "Euthanasia is interesting," he began.
"Euthanasia is a good death, bringing about a good death.
That's what we do." He went on to explain the legal constraints
and ultimately to illuminate through his own ambivalent
musings the moral confusions that keep most doctors from
active involvement with what they may humanely believe in:
I think the difference between passive and active is
artificial. I don't know if you know what they
generally consider the distinctions....Actively
agreeing about somebody's death is allowed if you
meet certain criteria. Actually it's done much more
sub rosa than you might consider. If you meet
certain criteria of intractable suffering and a
terminal disease, then a physician under certain
circumstances is allowed to end that patient's life.
We are [legally] allowed to do that [in the U.S.]. We
also have something called passive euthanasia which
is if death is inevitable and you are taking steps to
relieve suffering and that speeds up the time of
death, then that is okay...[But] if you look at intent,
then there is no difference between passive and
active euthanasia.
I have a lot of difficulty with killing patients, ending
suffering by putting the patient to death, mostly
because I don't think the patient is likely to be
suffering if his other aspects of medical care are

handled properly. Another issue in a good death is
whether timing is important. To my way of thinking,
timing isn't that important, that a physician should
participate in hastening a patient's death....It's
important to the patient not to be a burden any
more. You have fulfilled all your obligations, you've
taken care of all your connections, life is not going to
be worth a damn any more...and it's time to check
out. That's not metaphysical. That is very much tied
into what that person is, and that is assisted suicide,
[an act that] is for convenience and I'm not willing
to do that...Whether society should say at some
point that a patient has a right to do that is probably
something I would not object to, but that has to be a
societal decision...not a medical decision....I think
there is something about the separation between
medicine and society that has to continue.
These and other considerations were in the background of Dr.
Henderson's interaction with Margaret Bell in the final days
before Christmas, 1990, when she made the appointment to
discuss euthanasia with him. At that time he did not make
these issues clear either to the patient or to her family, partly
because another physician came on stage at this moment. A
compassionate woman doctor, whom we will call Ann Walker,
was a colleague of Dr. Henderson's and thought very highly of
him. She offered to discuss the issue of euthanasia and the
practical problems involved with the family at home after Mrs.
Bell had expressed her views to Dr. Henderson at the clinic. Dr.
Henderson appeared happy to have Dr. Walker take on this
chore. In the absence of full information at that time regarding
his views on euthanasia, the family assumed that Dr.
Henderson was taking the easy way out to protect himself
legally. This assumption was reinforced by Ann Walker's
surprisingly ready acknowledgment that she knew she was
being "used" in this way; however, she pointed out, she didn't
care, as she had her own strong convictions about patients'
rights.
When Ann arrived on December 22 to talk to Dr. Bell and his
eldest daughter, her words hit them "like a bolt of lightning."
She was compassionate and caring, but this was "the most
intense family learning experience we had ever had." The
eldest daughter woke up very quickly to the fact that the

practical details of her mother's intention were far from easy
and that they would not, as she had assumed, be carried out by
a physician or a nurse, as Mrs. Bell was no longer hospitalized
and was choosing to die at home. They would become the
responsibility of the family, but as primary caregiver, she
herself would have to carry them out. Even more astonished
was Dr. Bell's response, "Are we actually talking here about
shortening her life?"
Swiftly it became apparent that Dr. Bell either had not been
given or had not taken in the implications of Dr. Walker's visit.
Just as swiftly he reacted with a perspective that had not been
considered by the eldest daughter--the legal liability that could
become a problem for family members. A recent case was in
the news about a man who received a life sentence for helping
his wife, who was suffering from AIDS, die. Dr. Walker
explained her view that one way to resolve all this was to
reassure Mrs. Bell that her natural course of death at home, no
matter how long it took, would be no burden but rather a
blessing in the eyes of her caregivers. Perhaps, she suggested,
Mrs. Bell could perform this final act of trust in the love of her
family. She also implied, but did not state, that Mrs. Bell's
decision would be based as well on compassion for the
difficulty a family member would find in actually physically
assisting a beloved one to die. Enacting her stated high value
on connection and patient empowerment, Dr. Walker hugged
both husband and daughter as she left; she also left them with
a prescription for morphine sufficient not only to ease pain but
to cause death.
The turning point in this family drama came the next day when
the eldest daughter was able to convey the substance of Dr.
Walker's visit to her mother. She did so in the context of a
simultaneous illumination she was having about the necessity
of her seeing the processes of caregiving through, for purposes
of her own growth:
I explained to my mother that I was experiencing
the completion of our bonding by taking care of her
as she died, and in so doing was eliminating a
lifelong sense of incompleteness. I asked my mother
to trust my desire to care for her to the end at home.
I said that either of the other alternatives--giving
her over to hospital care or helping to hasten her

death--would be much harder for me personally than
seeing it straight through.
She spoke of her own concern that since death is "the final
stage of growth," there may be some reason for not hurrying
that process. Mrs. Bell's final protest was that she was afraid
her daughter's back would be hurt: "You will not be able to lift
me tomorrow." Her daughter told us that "somehow the
strength in my eyes convinced her otherwise, and then she
gave herself over completely to trust in her family's ultimate
care. The prescription was never filled."
Though the family's final decision was made in a context of
poignant personal relationships, it mirrored in interesting ways
the societal ambivalences outlined by Dr. Henderson in the
interview after Mrs. Bells' death. At least some of the family
members were clear on the humane intent of both active and
passive euthanasia, and had supported Mrs. Bell's wishes
throughout the course of her illness regarding avoiding
intrusive or heroic measures. They were in tune with both Dr.
Walker's and Dr. Henderson's views that the administration of
progressively higher and eventually fatal doses of painkiller
was acceptable and even expected in the hospital with terminal
patients, comatose or not. But their ambivalence about
personally "assisting suicide" coincided strangely with the
legally disputed gray area in American society where some
cases of "mercy killing" reached prosecution and others,
perhaps many others, carried themselves to their conclusions
in private.
By their own report, the family's courage in this regard never
matched that of Margaret Bell, the uniqueness of whose
attitude was attested to by her clergyman and many others.
Her vision of euthanasia was an utterly positive and even joyful
one, and if it had not been for her consideration of family
members' feelings it might have been her final act of self-
realization--an act she considered not only because she had not
wanted to be a burden, but also because she "never liked
messiness" and wanted to control the aesthetics of her death.
Yet the important point here is that the decision against
euthanasia was reached in just the sort of egalitarian
conversational context that Kleinman (1988) recommends. The
consensual nature of that decision, the mutuality of its

acceptance, and the family healing that the process of reaching
it achieved stand as a powerful endorsement of the value of
Kleinman's conversation-centered approach.
The Oncologist as Charon: Ethnoconcepts as Cultural
Containment
Anthropologists have identified the most destructive
concomitant of illness as fear of the unknown. For example,
drawing on the works of such earlier theorists as Levi-Strauss
(1967) and Turner (1967), Schieffelin (1985) describes Kaluli
healing seances in Papua New Guinea as emergent social
constructions that draw upon and actualize group knowledge
about the unknown. He emphasizes that removal of chaotic
fear through such dramatic social ordering processes lies at the
heart of shamanistic cures.
Although in official American ideology, religion and medicine,
like religion and state, split off from each other long ago, in
praxis the physician, laden as he is not only with responsibility
for the body but also with heavy ritual and symbolic weight,
has enormous influence over the psyche as well--a shamanistic
function of which American physicians themselves are often
aware, and whose potential they sometimes consciously exploit
(Spiro 1986). (7)
Correspondingly, one of the main services this American doctor
provides is a cognitive system emergent in diagnosis and
treatment (or lack thereof) that organizes and alleviates the
chaos of fear. Perhaps he does this partly by taking into himself
as a ritual figure all those unknowns of a mysterious disease
process and of death, thereby relieving the patient of that
wondering that is beyond her capabilities. As he is himself
untrained in shamanic myth and mystery, the full alleviation of
such wondering is beyond the oncologist's capabilities, as well.
Nevertheless, the ritual function of these doctors in Western
society is consolidated by their exclusive control of
authoritative knowledge--highly specialized scientific
information--in spite of its conceptual emptiness/inability to
explain. Yet the function itself is as simple and as old as the
Christian idea of carrying another man's burdens for him, an
idea shared by many ancient religions and healing traditions. It
is as simple as piling symbolic unwanted baggage--disease,

trouble, fear--on a symbolic camel and watching it walk off into
the sunset.
"Man," wrote Suzanne Langer "can adapt himself somehow to
anything his imagination can cope with, but he cannot deal
with chaos" (1974:23). It was Malinowski (1925) who first
made clear the roles of religion and magic in inducing socially-
agreed-upon confidence in observances designed to keep chaos
at bay. Expanding on Malinowski's insights, Turner (1967,
1974) and Geertz (1973) emphasized the processual nature of
"reality," showing that ritual performances are not only models
of what humans believe, but models for ensuring that they will
believe it. "In these plastic models, men attain their faith as
they portray it" (Geertz 1973:114). The metaphor of a camel
loaded with symbolic baggage, for example, or any other
metaphysical image used in a therapeutic context, can have the
effect of lightening the load of mystery upon the ill person. The
physician/healer whose ability to assume the load of chaos is
consonant with general social belief in the effectiveness of
such a maneuver will demonstrate a capacity to heal which
may have little or nothing to do with specific knowledge of
treatment or cures.
Seen this way, the oncologist's role must finally be understood
as having profoundly mystical dimensions. This doctor is
Charon in no mechanistic sense: morphine is ultimately no way
out of the ethical dilemmas of his mandate. His task remains as
hard as the task of the mythic thaumaturge has always been--
harder, because he is also charged, today, with probing the
furthest reaches of proliferating scientific fact to leave no
healing possibility unexamined. Yet despite its medical
connotations and emphases, the oncologist's role remains
basically a social one. In effect, he does address the lived
experience of illness as well as the mechanics of disease. As
arbiter of both the potentials and the limitations of scientific
medicine against a disease virtually synonymous with death, he
holds the reins on what the unassisted patient and family both
fear and dare to hope. The mystery they fear is clear; what they
dare to hope for--new discoveries in the nick of time, the power
of the mind to transcend statistics, the possibility that choosing
the time and the manner of death may be an affirmation of life,
the ultimate rightness of their hunch that death will be an
opening-out rather than a closing-in--may be much more
individual, a result of their histories as persons. But all

individualism must be culturally contained, and this is where
the cancer doctor's role has what is perhaps its central defining
power.
The Greeks' model "of and for" dying was the Charon myth, the
conceptual reality of which they expressed by burying their
dead with oboli on each eyelid to pay the ferryman for passage
to the Underworld. Just so does a modern cancer patient
internalize her relationship to the cancer doctor's ritual power,
once her own beliefs come into alignment with the technocratic
model/myth. She gains, ultimately, the treasure of conceptual
clarity, even if she must pay for it with the loss of individual
hope.
We suggest that the power operating here is both social and
religious. If a central act for many oncologists is the
announcement of terminality and getting the patient to accept
that diagnosis in the interests of "a good death," it is clear that
defining "a good death"--known by anthropologists to be a
social and religious preoccupation of societies in general (Fox
1973; Needham 1973)--has become at least partly the province
of these specialists. If one realizes further that under certain
conditions medical euthanasia may be permitted by our society,
that these conditions are most often met in cancer cases, and
that providing the means for euthanasia under these conditions
is defined by at least some oncologists as "bringing about a
good death," the implications of a role far beyond the medical
one as contemporarily conceived are inescapable.
In the end, in Mrs. Bell's case, the question of who does
Charon's actual ferrying, and to where, is left open. But some
boatman figure standing ready to meet the dying passenger
and carry her across seems just as necessary in our age as in
ancient times.(8) If dying has become medicalized in America
it has not done so without bringing elements of performance
into the medical profession along with it. If "exiting stage
right" is not yet actually condoned medically in America as a
good death, it is at least a ready metaphor for evoking the
performative aspects of dying and of attending those who die
either as actor or audience.
Ideas about illness and healing are as precisely idiosyncratic to
specific cultures as is verbal language. Ethnoconcepts form
part of the cultural signature: though there may be variation

within traditions, part of what holds the members of a culture
together is the containment provided by such ideas. This
containment holds true for people whether they live in
traditional or in highly industrialized societies.
The heritage of the Classical cultures of Greece and Rome held
powerful sway in Euroamerican thinking for centuries.
Economic fields such as medicine, politics, and law which have
invested heavily in, and gained much from, this intellectual
heritage, are slow to move toward "multicultural" (or even
ethnohistorical within European traditions) awareness. They
have the investor's unwillingness to learn of a possible threat
to the return on their worldview. The science of anthropology
goes largely unheeded by the science of medicine, for example,
and a fortiori the ethnoscience of traditional peoples has little
impact on medical practice, even as comparison or perspective.
But, as anthropologists often point out, a biomedicine that is
trying to humanize itself could learn much from other
conceptual systems and practices. The !Kung (Ju/'hoansi) of
Botswana and Namibia, for example, have a long and trusted
heritage of altered-state healing by laying on of hands. In this
tradition, religion and healing are inextricably linked--by the
practitioners, the n/omkxaosi or "owners of medicine," who
are seen as both doctors and religious technicians, and by the
expectations of all who participate. Such high value is placed
on n/om (an intangible potency or energy which is activated
both from within the healers' bodies and from within the highly
social context in which they work) that herbal medicine,
though known, is relatively little elaborated. Faith is put
instead in the transformative experience shared by patient and
healer.
In Ju/'hoan healers' ideas of death and fate lies an even more
striking contrast to Western medicine. For them, the power to
kill a person lies in the hands of !Xu (God). A healer has no
foreknowledge of what he can cure and what he cannot cure.
He must just try to the limit of his strength and if he is
defeated, the patient will die. No fault accrues to him if this
happens: instead he is socially rewarded for having tried his
best. For Ju/'hoansi or for Ju/'hoan healers, the strength of
n/om is not a thing that one can augment by wishing or trying.
It is a given. It is God-given. N/om is given to the healers
through the whim of !Xu. It does not set its owners apart or

above others in the society, and they do not receive material
benefits for using it. They participate, as do all the people, in
the dancing and singing which accompanies healing, for the
pleasure of participation in a beautiful social event.
Next, n/om is conceived as a thing only multiplied, never
divided, by being shared. Thus Ju/'hoan healers are not
concerned that when someone dies they have not tried hard
enough (as a physician who has not kept up with the latest
medical journals might feel) since a certain equable fatalism
releases them from personal responsibility. These factors, it
seems, have important correlates in the realm of individual
psychology and social structure.
First, n/om is not jealously protected, because sharing it
redounds to the good of all. Nor are there material rewards to
be had for exclusive control of n/om or its secrets. So a
priesthood doesn't form, and egotism in the defensive sense
does not characterize the social interactions of the n/omkxaosi
with the ill. Second, the ultimate responsibility for life and
death is far removed from these practitioners. Unlike
practitioners of biomedicine, with its stoutly defended turf (and
concomitantly highly contested legal responsibility), Ju/'hoan
healers are not assailed by accusations of ill-preparedness,
coming either from others or from within themselves. They do
not have to know everything. They can help ease the fear of
sickness or of death, just as some biomedical doctors do, but
they do not have to perform expert prognoses.
For these reasons, their role, even when dealing with grave
illnesses like the recently introduced tuberculosis, does not
define itself around an announcement of terminality or urgings
to the patient to order her affairs. It is life- and hope-affirming
throughout, holding to one source of hope--the patient's will to
keep trying--as the indicator that effort should still be
expended, that the patient should not be given up for lost.
It is here that Ju/'hoan traditional practices and newer holistic
medical approaches in the U.S. most significantly converge.
Neither treats the living patient as a "case." In both
approaches the patient is an autonomous actor, her
individuality valued, her inclusion on the healing team a given,
her will and beliefs assumed to play strong roles in the healing
process. But, contrary to the American holistic tradition's

emphasis on acceptance as an important part of the dying
process (Kubler-Ross 1975), in the Ju/'hoan tradition the sick
are alive until proven dead, given the benefit of the doubt as
long as they are still breathing (and sometimes even
afterwards): they are culturally allowed the ability to make the
miraculous recovery if it is in them--or if, as the Ju/'hoansi
believe, it is in !Xu's will.
Seeing the ease with which Ju/'hoan healers accepted that
death was ultimately out of their hands, Biesele was filled with
compassion for doctors whose techno-scientific tradition forces
them to incur so much personal responsibility. She
remembered Dr. Henderson's words, "Since I have become
primarily responsible for patients...it has become difficult, an
emotional effort, to help people die."
Upon her return to the Kalahari, Biesele told the story of
Margaret Bell's death to the Bushman healer she had known
and worked with the longest, a man in his fifties we'll call
Komtsa Kxao. Komtsa listened gravely to the story of how the
last afternoon of Mrs. Bell's life was spent quietly at home in a
coma with her family present, and how she quietly slipped
away in the evening. "Where was the doctor?" he wanted to
know. "Well, they all knew she was dying so he wasn't there."
Then Komtsa said, matter-of-factly and without a trace of
criticism for the other medical tradition, "It's too bad she was
so far away. If it had been me, I would have still been trying. If
she could have been brought back, I could have done it."
Shortly after her mother's death, the eldest daughter had told
us a strange story about hearing "garbled voices in the wall"
above her mother as she lay dying, speaking incomprehensibly
but so audibly that she actually went outside to see who was
there, but found no one. It occurred to Biesele to ask Komtsa
Kxao if he had any idea what these voices might have been. He
responded, "Of course I know. It was the spirits coming to take
Mrs. Bell. If I had been there, because I'm a n/omkxao I would
have been able to speak their speech and ask them to bring her
back."
We believe that what we can learn from non-"experts'"
ministrations to the ill, through their spiritual or humane
approaches to the whole person, is profound. Other cultures,
other traditions, suggest more open paradigms of the healer

than the technocratic biomedical model: in other models, it
seems, the ferryboat to the other side can run both ways.
Perhaps the role of Charon for Western physicians much
involved in terminal illness has a great deal to do with the
privileged Classical heritage in which they have invested. It's
not just the myth, though myths are powerful; it is the whole
complex of ideas about Cartesian rationalism and the human
potential for control of both nature and fate which come down
to us with the strength of unassailable Truth. Yet these ideas,
like any ideas, are cultural constructs, and the physician who
enacts the matrix they form by diagnosing in its terms only is
imposing a very narrow and culture-specific view of reality on
the life/death of his patient. Fascinatingly, the attempt to
meaningfully move beyond this narrow matrix informs not only
the philosophies of physicians and medical anthropologists who
advocate conversation-centered approaches to healing
(DiGiacomo 1987; Kleinman 1988), but also those of the
advocates of holism so admired by Margaret Bell (Cousins
1982, 1989; Siegel 1986).
Dying is a physiological and often interactional event with
profound religious, social, spiritual, and individual
ramifications. Enactments of their cultural matrix by
practitioners who wrestle with, talk to, or wait upon death, be
they technocratic Western physicians, holistic Western
practitioners, or traditional Ju/'hoan healers, work to ensure
that, like giving birth, dying will also be a cultural performance.
Endnotes
1. Our complete acceptance by Mrs. Bell and her family as
anthropologists was certainly related to the fact that we were
also close family friends.
2. Abrahams (1973) defines strange-making as making the
commonplace strange by juxtaposing it with the unfamiliar.
3. We rely here on insights derived from our work with healing
practitioners in more traditional contemporary societies whose

roles combine the religious and medical, Biesele's with !Kung
Bushmen of Southern Africa (1979, 1987, 1990a,b, 1992;
Biesele and Katz 1986; Katz and Biesele 1980, 1987) and
Davis-Floyd's with Mexican shamans (1982).
4. In biomedical parlance, "medicine" means generally and
generically internal medicine, the central specialty of the field
(Hahn 1985). Hahn reports that to "go medically" is to be
conservative, to intervene more cautiously, to act non-
invasively out of an ideal of "physiological wholeness."
"Surgery" is perceived by biomedical practitioners as the
extreme opposite, a mode of practice based on "invasive
procedures, direct looking at and handling of the body's
organs, and the virtues of aggressiveness, action, doing,
mastery, conquest" (Stein 1990:40).
5. A recent study of oncologists and their discourse on hope
found that, although they stressed the advantages of instilling
hope and a positive attitude in their patients, they did not
associate these with increased longevity but only with a better
illness experience (Good et al. 1990).
6. This notion that we can make ourselves both sick and well--
the "New Age" concept of patient responsibility for illness
(Ferguson 1980)--has been interpreted by social scientists as
"blaming the victim" (DiGiacomo 1992; Farrer 1988).
DiGiacomo (1992) points out how neatly this concept
articulates with the pre-existing tendency in biomedicine to
"blame the victim" in a different way--"she failed her
chemotherapy," "he ruptured his scar." Thus it can be easily
coopted into the biomedical discourse, providing technocratic
practitioners with yet another means of retaining control by
separating themselves from the patient and then defining the
patient's experience.
7. Kleinman himself advocates such exploitation. He
recommmends that physicians try to achieve "the highest
possible placebo effect rates" (1988:245). His approach to
psychotherapy involves establishing relationships that "patient
and family come to believe in as of practical help and symbolic
significance" (1988:245).
8. It is noteworthy that in this context some holistically-
oriented practitioners have begun to specialize in facilitating

death in much the same way as midwives facilitate birth. For
example, harpist Theresa Schroeder-Sheker plays music and
sings songs for the dying created by French monks in the 11th
century to help the dying make a peaceful transition, as part of
what Schroeder-Sheker terms "musical sacramental midwifery"
(Harrington 1990).
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