Professional Documents
Culture Documents
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207
Families, Systems & Health, Vol. 14, No. 2,1996 FSH, Inc.
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there?
Mrs. B: Oh, yes.
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210 /
As is often the case, families facing a
terminal illness are most concerned that
their loved ones not suffer. For the Bayers,
there was increasing worry about the
amount of pain Mrs. Bayer was experiencing and what could be done about it.
Nothing seemed to work. Frequently, a
family's experience of illness pain in the
past can influence their concerns in the
present. Mr. Bayer discussed his mother's
untreatable pain. She, too, died of cancer:
Mr. B: We'd get up every morning and go to
church and then she'd come home and prepare the meals and get us kids off to school.
Then she'd do the washing and the ironing. I
can remember plain as day that mother was
here (gestures), and here was the ironing
board. She'd have such pain that she'd have
to lay right over the ironing board and cry
because of the pain in the abdomen. They
didn't have any pain killers, just aspirin.
At this same meeting, the family jubilantly reported that the recently performed nerve block was a success. Family
members noted that the procedure not
only relieved their mother's pain, but
their own as well. The disease process of
cancer may be in one member's body, but
the experience of illness is shared by all.
DS: How do you feel things have changed or
not changed with everybody?
Granddaughter: I think everybody is relieved that she's out of pain.
Daughter I1: I think the nerve block worked
for all of us. (general laughter)
Daughter 2: We keep thinking about doing
the method on ourselves.
Daughter 3: I didn't realize it was a family
procedure.
Daughter 1: I kept staying in touch with
Mom all through this. A week ago Mom
called me, and I thought "whoa!" You know,
1
ers.
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Daughter 3: So I was in the bedroom alone
and called, "Marge," and Marge came. It was
just from the lungs and the morphine. So we
cleaned her all up and she stopped breathing
for about 20 seconds. Then she started up
and then she stopped, and then she started
up again, and then she stopped. And I said,
"Mom you can go now. It's okay." So I patted
her hand and held her arm and she left.
(tears)
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212
because the deep love starts up here [grandparents] and goes down. And I just thank
God my kids got to know Helen so well.
That's what it is all about. It's the legacy in
the kids.
We met again with the family in
December 1993, near the end of their
second year. Mr. Bayer attended the
meeting even though he had pneumonia.
We found the family at another transition.
One son talked about what it's like to see
his father's health worsen, and a daughter
discusses the bitter sweetness of healing
from her mother's death.
Son: I think you see what's coming for yourself . . . it bothers you just as much, too. It's
somewhat hereditary, the knees, the back.
We've all had the same problems that dad's
had. So as you see him going down, you've
got to see your future, too, and the limitations; and you know what the feeling is like.
Dad always was a lot more active than we
were, sports-wise and everything else; and
then, when you see that you just can't do the
normal things you want to do, it's kind of
depressing.
/ 213
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214 /
is available. It is no longer viewed as a
normal part of the life cycle. Most deaths
take place in the hospital, behind closed
doors, and sanitized. Before medical
school, I had never seen a dead body. As a
child, I was not permitted to view my
grandparents' bodies at their wakes. In
medicine, death is the enemy, and society
expects us to keep all our patients alive.
As a result, physicians often feel tremendous guilt when their patients die. As one
resident commented, "Death is a sign of
my incompetence, the ultimate failure.
I've been trained to go ahead and prevent
death."
Physicians receive little training in how
to care for dying patients, whether it's
technical training in adequate pain relief
or how to comfort patients and their
families. David Speigal (1993) has commented that the traditional adage for
medicine, "Cure sometimes, relieve suffering whenever possible, and comfort always," has become "Cure at all costs,
relieve suffering if there is time, and leave
comforting to someone else."
Caring for Helen Bayer was both rewarding and, at times, emotionally stressful. I can remember the most difficult
times: having to deliver the bad news: the
diagnosis of pancreatic cancer; helping
the patient and family decide how much
workup and treatment they wanted; how
to relieve her severe abdominal pain; and
coping with her death and my own grief.
However, the most difficult time was my
own initial self-doubt, wondering whether
I could have made the diagnosis sooner.
She had had back pain for several months
before I made the diagnosis. I struggled
with my own guilt and uncertainty: could
and should I have made the diagnosis
sooner? Would an earlier diagnosis have
made a difference in the outcome? Could I
have prevented her death? I found it
difficult to be emotionally available to my
patient or to her family. Finally, after
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patient's and family's struggle with terminal illnessis the uncertainty of it (Bursztajn, Feinbloom, Hamm, & Brodsky, 1990).
Uncertainty is written across every page
of their story. From confounding symptoms that linger, undefined, to the foggy
implications of a frightening diagnosis, to
the uncharted journey through the course
of an illness, to final days, and to the
moments of waiting, and then the silence.
Their experience, the experience of
those facing such illness, is our experience, as wellboth professionally and
personally. When I am teaching interns in
our program, I am amazed at the burden
they carry: the burden to "know," to be
precise, to be exactthe burden of being
certain. I realize that, as a psychotherapist, I was not trained any differently. I
remember opening the DSM-III (1980) for
the first time and thinking of it as a set of
keys that could unlock most of the doors
that I would encounter.
We enter our fields with knowledge and
skill that is gained through rigorous
training and apprenticeship. At times,
though, I feel I have been given a butter
knife and told to cut through the thick
underbrush of uncertainty that characterizes so much of our work with patients
and their families, and with residents. I
remember being approached by a resident
who was facing her first experience of
giving bad news to a patient. She had to
tell a 40-year-old woman, and her husband, that there was nothing more that
could be done about her ovarian cancer,
and that she was going to die. The
resident wanted some help planning what
to say. She also wanted me to be there so
the family could meet me, in the hope that
they would agree to come for therapy. I
met with the resident and walked through
the steps of sharing bad news, encouraging her to go slowly, to inquire about what
the patient thought was happening with
her illness, to attend to affect, and by all
Fam. Syst. & Health, Vol. 14, Summer, 1996
/ 215
means to be clear and concrete about the
prognosis.
The next day we all gathered around
the hospital bed, the patient, the husband,
the oncologist, the resident, and myself.
As soon as the resident began to speak, I
realized how foolish it was for me to think
there was some stepwise protocol for such
situations. I felt as if we were all explorers, adrift in uncharted waters, looking
for some land that did not appear on any
of our maps. The meeting was dominated
more by silence than by words. The news
was shared, but it hung in the air until the
patient and her husband could hear it.
Then we just sat together. And then the
news had to be shared once more, as if
their minds and ears had rejected the
initial telling. And then more silence.
Then questions. No, there was nothing
more that could be done to cure the cancer.
More silence, sitting together, being there,
tears, a touch, and more silence. The news
finally reached her heart, and his, and
ours. What to do? I have an old friend who
is a therapist. When anyone asks him
what he does for a living, he says, "I sit
with people." That's what we did. We sat
with her, and him, and each other. Nothing more, nothing less. Each of us can
think of a story like this: we face a
dilemma that outstrips our skills and
knowledge, and even our experience: we
are trapped in uncertainty. Sometimes the
best we can do is to stay with it and be
there, because our best intervention is
just being who we are and not what we do.
The threat of illness, separation, and
loss are powerful reminders of the more
subtle reality that living itself is an
uncertain endeavor. But within that uncertainty is untold possibility. Perhaps that
is part of what keeps us hanging in:
anything is possible, even if we don't know
what the "anything" is.
At the heart of uncertainty is the
dilemma of "not knowing." Luckily, family
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216 /
therapists Goolishian and Anderson (1988)
somehow stumbled upon this particular
quality"not knowing"as a key to effective helping. Being willing "not to know" is
not only a necessity in our work but also a
resource. If we do not know, we remain
open and curious. We ask and, more
importantly, we listen. And when we
listen, we find that we know even less, and
must ask some more. And we listen and
maybe even talk. For many of our patients
who live daily lives of uncertainty, to have
someone be respectfully curious and available is a new experience. In the darkness
that comes with uncertainty, this is often
the brightest light we can offer, even if it can
only light a step or two ahead on our path.
Long, long ago, I was a minister in a
rural church and I had a favorite passage
that I often used in my sermons. It comes
from the New Testament, in the book of
Hebrews (11:8). It describes how Abraham
was summoned, in his old age, to a land of
promise. The passage says, "By his faith
Abraham, when he was called, obeyed to
go out unto a place which he was to receive
for an inheritance, and he went out, not
knowing whither he went." Interestingly,
the passage is not about uncertainty but
about faith and trust: "Going out not
knowing." That defines in a particular
way the experience of the Bayers and
other families who face illness, dying, and
death. It also defines much of our work.
Not that we go out blindly because there is
much that we do know and much that we
can do. But, at an existential level, we too
go out not knowing.
That is where uncertainty and faith
meet. And by faith I do not mean belief, or
creed, or confidence in the certain outcome
of things. I mean simple trust, and basic
hope, and an unquestioning, simple willingness to go with people to unknown
destinations, and realizing that the willingness to go with them is healinga
healing for them as well as for us.
Storytelling (Lorenz)
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/ 217
nal illness. We were there as ethnographers, anthropologists. We were there just
to learn, and I think we learned different
kinds of things.
We learned to trust the family to take
care of itself. There were a number of
times when, as therapists, we might have
intervened. For example, someone would
become overwhelmed with emotion and
have trouble expressing him or herself.
Another family member would interrupt,
distract, and "rescue" this person. In a
therapy session we would have blocked
that, and tried to facilitate the distraught
member's expression of affect. We found
that the family, however, would eventually return to that member, once she or he
had regained self-control, and help that
person express what needed to be said.
Over time, it was a very affirming experience to witness how the family continued
to take care of itself. This engendered in
us an attitude about how to be with this
family. That then carried over into our
work with other families. It fostered an
attitude of respect and appreciation for
the unique strengths and coping skills
each family brings to these difficult kinds
of experiences. I think this attitude not
only fosters respect for the storyteller, but
it also promotes the health of the healer.
As healthcare and mental health providers, we often feel called upon to do
something. With this family, and in this
situation, we learned how to just be with a
familytry to understand them, respect
them, and care about them. This is
something the family taught Dave and me
as therapists/researchers, and something
we could observe in Tom as physician. Tom
was very good at doing this. He hung in
there with this family, when at times I am
sure it must have been difficult for him.
We sometimes get so caught up in trying
to help our patients and their families,
even when there is nothing we can do
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218 /
other than to be with them, that it only stories around terminal illness and death.
makes matters worse for both them and us.
As David Meltzer (1984) said:
Just as an attitude of respect promotes
self-respect, an attitude of disrespect
Death teaches us life. A death often gives our
own lives deeper meaning, deeper value; we
promotes problems. I see this as the
look out at a life with renewed sight and vow
problem with "medical stories." As providto be more aware and more awake, more
ers, we need to be aware of the deleterious
alive, [p. 8]
effect we can have on our patients.
Primum non nocere"First do no harm." I
ILLNESS, MEANING, AND STORIES
have been quite impressed with the way
In the end, we learn more from the
our patients, especially those with chronic
or terminal illnesses who need to visit a patients and families who come to us for
provider frequently, can appropriate a care than we do from anyone else. They
medical vocabulary and even a biomedical are our best teachers. In our view, one of
way of thinking. I think they tell their the most valuable lessons that patients
stories in our dialect in order to make our and families teach us is the role that
lives easier, but these "medical stories" meaning plays in their experience of
are often divorced from the patient's and illness. The Bayer family, and Mrs. Bayer
family's own life experience. They may in particular, had an unshakeable relieven imitate our distance. I now try gious faith. Service to others and the
harder not only to hear these medicalized community of faith that surrounded the
stories, but also to seek the patient's and family were key elements facilitating
family's own stories. I then try to inte- their adaptation to an unchangeable situgrate the "medical stories," the illness ation. A patient's and family's capacity to
stories, and the family stories so that they find meaning in their dilemma is often a
major factor in the family's ability to cope.
are more congruent, meaningful, and
Patterson and Garwick (1994) describe
helpful to the families I see. With Mrs.
three
levels of family meaning that shape
Bayer, her stories about her fall down the
how
families
adapt to chronic stress.
stairs, the CAT scan, the visit with Tom,
Situational
meanings
have to do with how
the biopsy, the nerve block were all woven
(or
whether)
a
family
attributes meaning
into the fabric of stories about her life, her
to
an
illness
event.
As
an event unfolds,
children, and her faith.
family members gradually create meanThe meaning of our lives is packaged in ings for the experience. This occurs
stories. These stories are dynamic in that through conversation in which members
the attitude and behavior of the listener try to explain or define what caused the
affects their meaning. The meaning of illness, or how to interpret it. This process
these stories may be deepened through an may be an evolving one in which interim
attitude of respect. Or, unhappily, the mean- explanations are replaced as more inforing may be buried or corrupted by an overlay mation is made available to the family
of medical jargon and interpolation.
and the family has more opportunity to
My final observation is that stories process the experience. For example, until
affect the listener as well. My patients' a medical diagnosis was made, the Bayer
stories touch off my own stories. Our family believed that their mother's back
stories affect their stories, and their pain resulted from a fall. When a more
stories affect ours. Their stories broaden definite diagnosis was presented at a
our experience and enrich the meaning of family meeting, the family quickly adour lives. This may be especially true for justed their definition of the experience to
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/ 219
guiding the family in its adjustment to her
terminal diagnosis. She accepted it first,
and then the others followed.
Upon Mrs. Bayer's death, Mr. Bayer
remained head of the family, helping to
keep the family's identity stable. As Mr.
Bayer's own health deteriorates, the family's identity will enter a period of transition as the next generation of adult
children assume the leadership roles provided by their parents. (Even during Mrs.
Bayer's illness, one daughter was often
compared to her mother; in this way, the
selection of who may be an acceptable
replacement for some roles is made.)
The third level of family meaning is
family world view. This is an intangible
element that is not easily articulated by
the family. It involves core assumptions
that form the foundation of the family's
being. The family's world view may emerge
as a particular style and orientation to life
and life's challenges. This was reflected in
one son's early discussion of how the
family always meets challenges head-on
and then keeps moving forward. While
this approach was challenged by an
apparently terminal cancer, the family
merely shifted their focus. They did not
try to overcome the cancer, but they did
try to overcome its impact on their lives.
In so doing, they revealed an optimism
that, though shaken at times, remained
throughout. They also revealed a dogged
determination and a faith in God and the
afterlife that helped them remain hopeful
without denying the inevitable.
A family's world view does not develop
in a single generation of a family. It is an
evolving aspect of any family and is
influenced by events that occur across
many generations. The stories that are
told by family members about how others
have coped with crises in the past are
guideposts, providing direction for the
family in the present. Mr. Bayer's stories
of his mother doubled over an ironing
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220
own, as well. Therein lies both the challenge and the reward of such work.
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APPENDIX
Eliciting the Meaning of the Patient's and Family's Terminal Illness Experience