You are on page 1of 15

A Mother's Death:

Family Stories of Illness, Loss, and Healing1


DAVID B. SEABURN, M.S.f
ALAN LORENZ, M.D4

This document is copyrighted by the American Psychological Association or one of its allied publishers.
This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.

THOMAS L. CAMPBELL, M.D.


MARY ANNE WINFIELD#

Lukens, 1991; Hoffman, 1990; White &


Epston, 1990), psychology (Bruner, 1986;
Geertz, 1973; Gergen, 1985), and mediNE of the most important roles that a cine (Hunter, 1991; Kleinman, 1988; Seahealthcare provider can play in the burn, 1995; Seaburn, Lorenz, & Kaplan,
lives of patients and families facing a 1992; Stein & Apprey, 1992). Much of the
terminal illness is to be a witness to the interest in storytelling is influenced by
stories of their experience. While being a social constructionism (Berger & Luckwitness may not lead to cure, it is a critical mann, 1966). Social constructionism fosource of comfort and healing for patients, cuses on how people in a particular
families, and providers alike. Storytelling context describe, explain, and give meanand story listening has emerged as a key ing to the world in which they live
dimension of caring in a number of fields, (Gergen, 1985). Through language and
including family therapy (Anderson & social dialogue, we create the stories that
Goolishian, 1988; Efran, Lukens, & form the fabric of meaning that holds our
lives together, influences how we live, the
choices we make, and how we adapt to
* This article is adapted from a plenary session
presented by the authors and five additional mem- personal dilemmas. Understanding how
bers of the Bayer family at the STFM Family in patients and families make sense of their
Family Medicine conference, Amelia Island, Florida, illness experience often unlocks the door
on March 3, 1995. We thank the entire Bayer family to understanding the nature of their
for their courage, generosity, and wisdom.
coping.
t Assistant Professor, Departments of Psychiatry
No other situation provides more of a
and Family Medicine, University of Rochester School
of Medicine and Dentistry, and Highland Hospital. challenge to our storiesand their lifeSend correspondence to Jacob Holler Family Medi- sustaining "fabric of meaning"than when
cine Center, 885 South Avenue, Rochester NY 14620.
someone we love is dying. This article tells
$ Canal Park Family Medicine, Palmyra NY, and
the Department of Family Medicine, University of such a story, the story of one family's
experience with terminal cancer. It is also
Rochester School of Medicine and Dentistry.
Associate Professor, Departments of Family the story of helping professionals who
Medicine and Psychiatry, University of Rochester were involved in this story. We will begin
School of Medicine and Dentistry, and Highland
with the family's story, as told in their
Hospital.
# Daughter of Clement and Helen Bayer; Presi- many voices. Then we will share the
reflections of the primary care providers
dent, Winfield Ink, Camillus NY.
Fam Syst & Health 14:207-221,1996

207

Families, Systems & Health, Vol. 14, No. 2,1996 FSH, Inc.

208

who were involved in the family's care and/or


support. Finally, we will talk about the role of
meaning as it shapes how families cope with
a terminal illness. We will also suggest
questions that are useful when exploring the
issue of meaning with patients and families facing a terminal illness.

/\

v^J

/\

v*>;

-^ I

IT"

This document is copyrighted by the American Psychological Association or one of its allied publishers.
This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.

THE FAMILY'S STORY

We (David Seaburn and Alan Lorenz)


met Helen and Clem Bayer in 1991 when
Mr. and Mrs. Bayer came for the first
session of a multifamily support group for
persons with a chronic illness. The Bayers
were patients of Tom Campbell, M.D.
Unfortunately, at the last minute, the
other participants in the group canceled.
We explained the dilemma to the Bayers
and said that we were still very interested
in learning how couples and families cope
with chronic illness. We asked if we could
interview them, and they graciously accepted. What followed in the next few
weeks was the unexpected diagnosis of
Mrs. Bayer with pancreatic cancer, and
the beginning of a 4-year journey with the
family through their experience of loss
and healing. We documented this period of
time through videotaped home visits with
the extended family, often including as
many as 20 people.
In our first meeting with Mr. and Mrs.
Bayer, in January 1991, we constructed a
genogram (see Figure 1) and quickly
experienced the closeness of their large
family of nine adult children, and the
religious faith that was so central to the
Bayers as a couple. They were living vital,
active lives, with a deep involvement in
their church and in the lives of their
children and grandchildren.
Mr. Bayer, 80 at the time, was coping
with a number of chronic conditions
including diabetes, Parkinsonian symptoms, as well as a past heart attack, knee
joint replacements, and an ulcer. Mrs.
Bayer was an able caregiver who discussed how she organized all Mr. Bayer's

I OO J

nw

)^

2
iH

ml , I

f (N )

T'^O^

2 L

ml

V'v

Xs)
I
oo

-a X-^\rV

i ,
^ 0 LnJ

OS

^
**

/ 209

This document is copyrighted by the American Psychological Association or one of its allied publishers.
This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.

SEABURN, LORENZ, CAMPBELL, and WINFIELD

medications. As for her own health, Mrs.


Bayer, 78, reported no significant problems. The only difficulty of note was back
pain she had been having for about 4
months. She attributed the pain to a fall
she had had on the cellar steps at a
daughter's house. Further tests to explore
her back problem, including a CT scan,
were scheduled for the coming week.
At the end of the 90-minute visit, we
invited the Bayers to come back to teach
us more about how they and their family
coped with illness. They agreed and we
scheduled another visit for the following
week. A day before that second visit, we
learned that Mrs. Bayer had been told
that she had pancreatic cancer. As their
primary care physician, Tom Campbell
had presented the diagnosis during a
family meeting which several of the Bayers'
daughters attended. We called the Bayers to
share our concern and to ask how they were
doing. To our surprise, they suggested we go
ahead with the visit, and we planned a home
visit for the following day. The Bayers
greeted us warmly and welcomed us into
their home. The Bayers talked about their
initial reaction to the diagnosis:
DS: Was that what you were expecting?
Mrs. B: I don't think I was. No, I went with
the hope that maybe he'd tell me that they
had found something that they would be able
to take care of. I guess I went with that hope.
When he said "pancreatic cancer," I wasn't
really shocked, because it made sense to me.
He said it's a very difficult thing to find and
there's no cure for it right now. Dr. M [a
specialist] also suggested that we see an
oncologist. He said, "I think you should go
and talk to an oncologist first." He also said,
"There are things happening every day, even
with pancreatic cancer."
DS: And you weren't surprised by what Dr.
Campbell had to say?
Mr. B: No, I wasn't a bit surprised. I mean
especially when he said bring the family in. I
figured that was the showdown right there.
Fam. Syst. & Health, Vol. 14, Summer, 1996

DS: Did it help to have your daughters

there?
Mrs. B: Oh, yes.

During this visit we discussed the value


of meeting the rest of their family to learn
how they were coping with this news. In
the following weeks we set up a family
meeting at the home of one daughter
(Martha). We then began a series of eight
home visits that typically included three
generations of the family as well as some
of the children's spouses.
At the first of these meetings in February 1991, the family members discussed
many of their initial feelingsanxiety,
helplessness, urgency, and hope. The
family's coping style was one of handling
difficulties and challenges head-on and
then moving forward. In our second
meeting with the family later that month,
they described how the cancer frustrated
their efforts:
Daughter: She is always caring and looking out for other people. And I think that's
what we want to do now. We want to look
after Mom cause she's done it for us for so
long. And so we want things to happen now,
we want the answers now, we want the
treatment now. Yes, we want the answers
about the treatment now. If she has six
months to two years, then do something the
next day about it, don't let it hang and wait,
and wait, and wait for something to happen!

Son: We can't be bothered. Dad taught us


when somebody does something wrong, it's
over and done with. You might get smacked,
you might get yelled at, but it was over and
done with. Never a grudge, never a hard
feeling. We had people and friends who
would be afraid to come to our house because
Dad had yelled at them for something. Mom
would say, "That was over the minute it
happened." So we learned, if things are over
and done with, let's get on! And now, it's,
"What the hell is going on?"

This document is copyrighted by the American Psychological Association or one of its allied publishers.
This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.

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.

Numbers are used to designate separate speak-

she said, "Honey, they're going to do that


videotape and they want to know if you want
them to come on Monday or Friday," and
then she went through this whole litany of
what was going on with everybody else. I'm
like, "How do you feel?" "Oh, I feel better,"
she said. So she was much more normal.
Daughter 4: Well the kids do notice the
difference. Neil, my son, who's seven, said,
"Grandma gave me the biggest hug and she
really is strong. She hugged me tight." And
they do notice that there's a difference from
before when they saw her and now when
they see her.
Son: One thing I think it's been a help to is
Dad. It's got him active. Our real concern
was about Dad sitting on his duff with his
knees, and his heart, and just vegetating.
Now he's got to get meals and everything. It's
been great for him.
In May 1991 Mrs. Bayer's condition
worsened. Toward the end of the month
we spoke with her about having another
family meeting. The meeting was scheduled for June 4. Unfortunately, Mrs.
Bayer died a week before. Nevertheless,
the family decided to meet. Mrs. Bayer
had always hoped to die at home, and she
did. At that meeting the family discussed
Mrs. Bayer's final days:
Son: So now we want to know the stages.
You know, we knew what Mom wanted,
which was nothing. But we also wanted to
know what to expect. . . after all, she's going
to be home and, we want to know, what are
we to expect? We know she's now declining.
Jaundice has set in and started to get real
bad. We are just saying, well what, what is
the next step after jaundice? Is she going to
have trouble breathing, is she going to be
choking, what, what comes now? And if we
call 911 or something, what do we get started
that we can't stop? Dr. K [oncologist] explained to us, with the jaundice and all, it
would be two to three days to two weeks.

This document is copyrighted by the American Psychological Association or one of its allied publishers.
This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.

SEABURN, LORENZ, CAMPBELL, and WINFIELD

Daughter 1: I said what will happen and


what do we do when it happens? He said the
breathing will become more laborious, the
oxygen and medicine will not help at all. And
I said what will happen if somebody were
here and we were all afraid we might do the
wrong thing, whatever that was. I didn't know
if there was a wrong thing. And what if you
panicked and called 911? Would they resuscitate her? What would they do? Anyone that
would resuscitate her at that stage would not
help, as her lungs were not oxygenized.
Daughter 2: And he said that basically at
that stage she might become confused and
anxious, and the most important thing to do
would be to keep her comfortable.

/ 211
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)

Daughter 4: I think she gave us the love for


so many different things: music, and books,
and children, and family, and friends. I
thought a lot in the last few months that she
really taught us all how to live, but she also
taught us how to die.

Daughter 1: The day before she died was


her best day. She held court. I mean she was As is evident in their story, Mrs. Bayer
in her nightgown, she didn't use the railing. and the whole family faced her death with
She wanted her Lorigon perfume on and she both grace and courage.
had make-up on, and she laid in bed, and
The next meeting was scheduled for
everybody came in to see her and said "good- September 1991, about 3*/2 months after
bye." I think she was sleeping most of the
time, but when you came in, the grandchil- Mrs. Bayer's death. That visit focused on
dren came and jumped on the bed, she was many things: sharing care for Mr. Bayer,
having no pain whatsoever. She had mor- the impact of Mrs. Bayer's sister's death 3
weeks after Mrs. Bayer died, and the
phine maybe twice.
balance of strength and vulnerability that
Daughter 2: I think Mom knew, at that
point, Thursday, when I was there. Mother characterized the family's grieving. Some
always talked about having her funeral ar- still expected to see her; others tried hard
rangements done beforehand. She didn't to remember her as she was. The grandwant to wait until the last minute. Then children discussed the difficulties their
Thursday, the undertaker and people who parents were having, and everyone agreed
are friends of the family came over and sat that getting together as a family throughand talked with Mom and Dad and made all out those months had helped.
the arrangements.
We did not meet again with the family
for another year, October 1992, roughly 17
months after Mrs. Bayer had died. At that
meeting, family members discussed the
Daughter 3: She thanked God about three difficulties of the second year and the
times for her family. She kept going back and impact that a parent's death has on one's
saying "Thank you for my family." Then she
said, "Thank you for the wonderful health own identity. As one member said, "I
that you have given me over the years." And hated to see 1991 end, because it was the
then she went back again. She said, "Did I last year she was with us."
say thank you for my family?"
Daughter: I have to agree with Helen. I
think this second year is really tough, you
Fam. Syst. & Health, Vol. 14, Summer, 1996

This document is copyrighted by the American Psychological Association or one of its allied publishers.
This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.

212

know, the first year that she's gone. There


are still times I go to the phone to call to tell
her something. Then I realize she's not there.
But I also have to agree with Clem. I don't
question that she's in a better place; I know
that. We certainly don't want to see her
suffer, and towards the end I think we just
were praying that she would go, because
watching her suffer was like . . . she had
done so much for everybody. My feeling was,
and I'm sure everyone agrees, that it wasn't
fair. She gave so much of herself while she
was here. We wanted what was best for her,
and I thinkyou know that book out just
recently, Dying with DignityI think that's
what Mom did. That's what she wanted: she
wanted to die at home. She wanted to die
with her family around her. She didn't want
all the tubes and everything and the hospital
scene. I look back and I think, I'm happy the
way she died.

Daughter: I don't know about anybody else,


but I found there were things that usually
came really easy for me that I wasn't able to
do the year Mom died. I used to have a job
where I had to give presentations and I
couldn't get up in front of people. I couldn't
say something simple at a meeting without
getting all emotional and just having a terrible time. You know, it was like a whole year
of that. I think part of it was that I really
questioned my identity that year. If I wasn't
my mother's daughter, who was I? Even
though I was a mother and had kids, I had to
really think about a lot of things that I
hadn't thought about before.
A tradition of faith and family commitment were central to how the family coped
with Mrs. Bayer's death. This gift is
captured in the comments of one son-inlaw about Mrs. Bayer's legacy.
Son-in-law: I think the legacy that she has
left is probably twenty of the sturdiest grandchildren. It is a legacy that Clem and Helen
are leaving. Those kids look up to these two
people. Everyone of them has this deep love

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.

Daughter: As we got into the end of the


second year, I think I started to feel guilty
about the fact that I didn't think about her
all the time. You know, I felt like, geez, I don't
know if I like this feeling of healing because
it really takes me further and further away
from her on a daily basis. Before this time I
was so consumed with her death and her
illness and all of that. Now there are long
periods where I'm carrying on with my life
and then all of a sudden things will happen
or something will bring up a memory, and
then I feel bad. But it's not that constant
sobbing where, you know, there were mornings that I thought, "I don't want to get out of
bed."
Our most recent meeting was in December 1994, 3y2 years after Mrs. Bayer's

/ 213

This document is copyrighted by the American Psychological Association or one of its allied publishers.
This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.

SEABURN, LORENZ, CAMPBELL, and WINFIELD

death. The family had faced several other


losses of relatives and in-laws to cancer
since we had last met. Also, Mr. Bayer's
health had been on a rollercoaster, dipping so low at one point that a cousin
thoughtfully gave him permission to
"leave," to which Mr. Bayer responded,
"I'm not going anywhere." The meeting
was attended, as usual, by three generations of the family. They discussed how
the legacy of their caring started with Mr.
Bayer's mother's death and his father
teaching him how to help his siblings: a
legacy that hasflowedlike a steady river
to the grandchildren who talked about
how they are helping their grandfather.
The family also talked with insight about
how the legacy of caregiving at times has
made it hard for them to take care of
themselves. They also discussed Mr. Bayer's health and the possibility of his dying.
At the meeting, one daughter discussed
the anger that was also a part of the
family's grief; and a grandson helped us
redefine "family" as he discussed what his
6th-grade chorus teacher might have
meant by the term "immediate family."
Daughter: There was a lot of anger with all
of us. (tears and laughter) It took almost
three years for some of us to get back to not
walking on eggshells. It was just frustration
that we couldn't doI think frustration that
we couldn't be there for each other, at times.
There were also differences of opinion about
different things, but we always did keep
coming back. I think there are people who
don't do that. I think they argue and then it's
done, and they won't keep coming back. I
think we're just persistent, or pains in the
butt. I don't know which it is but, you know,
we just keep coming back. Even if you're
arguing at least you're still talking.

Grandson: I can remember way back in


sixth grade, I was in chorus, and our chorus
teacher said we had to make it to every
Fam. Syst. & Health, Vol. 14, Summer, 1996

single concert unless there's a strong reason,


if you're deathly sick, or an immediate family member dies. And I thought to myself,
does this mean just like my brother? (laughter) I mean, are you saying that if my cousin
dies I have to come sing? (laughter) I can't,
like, go to the funeral? And it just was weird,
the way she said "immediate family." And I
thought, well, it seems to me that immediate
family is like . . . [Several voices: "Everybody."] Yeah, everybody!
THE PROFESSIONALS' EXPERIENCES
Caring (Campbell)

Caring for the Bayer family has been


and continues to be one of the most
rewarding experiences in my professional
life. I feel extraordinarily privileged to
share this stage of the life cycle with my
patients and their families, and particularly with the Bayers. They have taught
me so much about death and dying,
healthy grieving, and the importance of
family, not just professionally, but personally. My experience caring for Helen Bayer
helped me prepare for and cope with my
own father's death, also from cancer, one
year later.
When Ifirstbegan practice, the greatest
personal pleasures of my professional life
were delivering babies and caring for
families throughout the birthing process.
Perhaps it is a sign of entering midlife
that I have become more interested in
helping dying patients and their families
have the kind of death that they want,
what Dozor and Addison (1992) have
called a "good death." I believe I was able
to help Helen Bayer and her family
achieve this. Much of my task was to keep
the medical system from interfering with
this process and to support the patient's
wish to die at home.
Our culture is phobic about death.
Despite the fact that death is a reality for
every patient, physicians are taught that
death represents failure, and that they
must fight it with whatever biotechnology

This document is copyrighted by the American Psychological Association or one of its allied publishers.
This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.

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

discussions with colleagues and much


agonizing, I concluded that I might have
been able to make the diagnosis sooner;
but an early diagnosis of pancreatic
cancer is difficult, and it probably would
not have affected her prognosis. The cure
rate for pancreatic cancer, even though it
is diagnosed at a very early stage, remains
poor. That realization and acceptance
helped me to be more emotionally available and supportive to the family.
Helping the Bayers and other families
of dying patients helped to reaffirm for me
the importance of the primary care physician in caring for dying patients. In the
epilogue of his book, How We Die, Nuland
(1993) comments:
Between the lines of this book lies an unspoken plea for the resurrection of the family
doctor. Each one of us needs a guide who
knows us as well as he knows the pathways
by which we can approach death. There are
so many ways to travel through the same
thickets of disease, so many choices to make,
so many stations at which we may choose to
rest, continue, or end the journey completelyuntil the last steps of that journey
we need the company of those we love, and
we need the wisdom to choose the way that is
ours alone. The clinical objectivity that
should enter into our decisions must come
from a doctor familiar with our values and
lives we have led, and not just from the
virtual stranger whose superspecialized biomedical skills we have called upon. At such
times, it is not the kindness of strangers that
we need, but the understanding of a longtime medical friend, [p. 266]

I feel privileged to have been the medical


friend and family physician for the Bayers
and other families who have been through
the dying process.
Uncertainty (Seaburn)

For me, one of the most striking aspects


of the Bayers' experience of illness, loss,
and griefan aspect that is part of every

This document is copyrighted by the American Psychological Association or one of its allied publishers.
This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.

SEABURN, LORENZ, CAMPBELL, and WINFIELD

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

This document is copyrighted by the American Psychological Association or one of its allied publishers.
This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.

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)

Joseph Brodsky (1980), in his poem, "A


Part of Speech," makes a list of observations:
In a corner, it's warm.
A glance leaves an imprint on anything it's
dwelt on.
Water is glass's most public form.
Man is more frightening than his skeleton.
A nowhere winter evening with wine.
[p. 95]
What follows is a list of my observations
derived from our experience with the
Bayer family. The first observation has to
do with the role of stories. We observed
that what is richest and most meaningful
in our lives is packaged in stories. When
we reflect back on our own lives, we find
images, a series of images, a montage of
images, and with each image there is a
story. As we go back through these stories,
looking, searching, reviewing, we construe the meaning of our lives. With the
Bayer family, we were struck by the role
that stories played in our meetings. When
asked to expand on a declarative statement, most frequently the response would
be a story. For example, in following up on
Mr. Bayer's statement "there was cancer
in my family," he told the story of watching
his mother "doubled over the ironing
board in pain from her stomach cancer."
I think one of the most meaningful
stories for Mr. Bayer, one that he repeatedly told, is the story we affectionately
dubbed the "fish story." As you now know,
the Bayers are a very religious family. As
part of their congregation, Helen Bayer
was a member of FISH. This group is
dedicated to helping others in the congregation with things like transportation to
the store, to doctor's appointments, and so
on. Four days before she died, Helen
Bayer made thirteen calls, that is, matched
thirteen people who needed help with
thirteen people who could provide help.
This is an impressive thing for a person to

This document is copyrighted by the American Psychological Association or one of its allied publishers.
This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.

SEABURN, LORENZ, CAMPBELL, and WINFIELD

do on her deathbed. Mr. Bayer repeatedly


told this story because it captured so well
the spirit and personality of his wife. She
was altruistic, generous, and derived a lot
of satisfaction from helping other people.
Like the picture that is worth a thousand
words, the story is worth a thousand
descriptive statements.
For me, this brings to mind a huge loss
for families in the United States. In this
country, the average household has the
television on over 7 hours a day. With this,
our family stories are being replaced by
situation comedies, game shows, talk
shows, and the like.
I would like to offer an example from my
own life about how to keep family stories
alive. While I was taking a family-oforigin course from Susan McDaniel at the
University of Rochester's Family Therapy
Training Program, she suggested that I
write a letter to my as yet unborn child,
describing family stories and strengths.
The day after my son August was born, I
wrote him that letter. August was named
after my father's father, and I later shared
the letter with my father. August is now 5,
and every birthday since, my father has
sent him a "Dear August" letter of family
stories about August's namesake and
other family members. This collection is a
priceless treasure and an experience I
recommend to others.
The second observation has to do with
the interaction between the listener and
the storyteller. We found the Bayers'
stories, and their telling of them, to be a
dynamic process. The meaning of stories
is influenced by the context of the listener.
We were not there to do therapy. We made
home visits with the understanding that
our objective was to learn, to learn about
how families cope with illness. We wanted
to expand our knowledge base and improve our skills to teach other health and
mental health providers about how families cope with illness, particularly termiFam. Syst. & Health, Vol. 14, Summer, 1996

/ 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

This document is copyrighted by the American Psychological Association or one of its allied publishers.
This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.

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

This document is copyrighted by the American Psychological Association or one of its allied publishers.
This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.

SEABURN, LORENZ, CAMPBELL, and WINFIELD

include cancer. Only later did the family


expand its definition to include terminal
cancer. A key element in their adaptation
was their flexibility in redefining the
experience and incorporating that redefinition into how they coped. The family
would no doubt have had greater difficulty
adapting to their mother's illness if they
had maintained a belief that their mother's pain was caused by a fall.
The second level of meaning, family
identity, "refers to how families view
themselves" (Patterson & Garwick, 1995,
p. 292). Family identity includes how the
family defines relationships within its
boundaries and with the outside world. It
also includes how roles are assigned and
how relational interaction is governed
(rules and norms). A diagnosis of a chronic
or terminal illness often calls for changes
in roles, rules, and how the family includes or excludes others.
The Bayer's family identity was organized around Mr. and Mrs. Bayerthe
patriarch and matriarch of the entire
clan. Much of the family's ethic of service
and care for others emanated from Mr.
and Mrs. Bayer. They were the heads that
guided the family body. Early in the
illness, family members discussed who in
the family should maintain primary contact with the medical providers in order to
disseminate information to everyone else.
After considerable discussion, they decided that Mr. and Mrs. Bayer were still
able to provide this function and should
continue to do so. This helped the family
maintain its identity in the early phases
of the illness.
While Mr. and Mrs. Bayer were always
included, their daughters and sons soon
played more pivotal roles in receiving and
interpreting medical information. This
transition was accomplished without Mr.
and Mrs. Bayer needing to relinquish
their positions as heads of the family. In
fact, Mrs. Bayer's role became one of
Fam. Syst. & Health, Vol. 14, Summer, 1996

/ 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

This document is copyrighted by the American Psychological Association or one of its allied publishers.
This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.

220

board from cancer pain not only sparked


the family's anxiety about Mrs. Bayer's
pain but provided a model for not giving
up in the face of pain. By the same token,
because of his mother's illness and death,
Mr. Bayer learned early from his father
that he must look after and care for other
members of the family. This experience
helped form the backbone of the family's
commitment to each other and to others
who are suffering.
The issue of meaning is a critical aspect
of caring for any patient and family facing
a terminal illness. It is an issue that is
often overlooked and yet it has a profound
impact on how a family functions in the
face of disease. At the simplest and yet
most profound level, the first task of the
provider is to help the patient and family
tell their story. It is not only the story that
helps provide information leading to a
diagnosis, but it is often through the story
that the only path to healing may be
found. It is in dialogue among themselves
and with the world around them that
families make sense of their experience.
And it is through the meaning they make,
that families oftenfindthe means to go on.
Questions that wefinduseful in helping
patients and families explore the meaning
of their terminal illness experience are
included in the Appendix. These questions
help the family not only tell their illness
story but create it, as well. These questions help the family fashion the meaning
of their experience and also express it.
Asking these questions draws the healthcare provider into the family's story in a
powerful way. We become co-authors of
the family's illness story and often are
significant characters in its unfolding
"plot." The questions we ask family members stay with us, personally and professionally. They become the questions we
ask ourselves about what it means to be
involved in their living and their dying,
and what it means to be involved in our

own, as well. Therein lies both the challenge and the reward of such work.
REFERENCES
American Psychiatric Association. (1980). Diagnostic and statistical manual of mental
disorders. Washington DC: American Psychiatric Association.
Anderson, H., & Goolishian, HA. (1988).
Humans systems as linguistic systems: Preliminary and evolving ideas about the implications for clinical theory. Family Process 27:
371-393.
Berger, P., & Luckmann, T. (1966). The social
construction of reality. Garden City NY:
Doubleday.
Brodsky, J. (1980). Apart of speech. New York:
Farrar, Straus & Giroux.
Bruner, J. (1986). Actual minds, possible
worlds. Cambridge: Harvard University Press.
Bursztajn, H.J., Feinbloom, R.I., Hamm, R.M.,
& Brodsky, A. (1990). Medical choices, medical chances: How patients, families and
physicians can cope with uncertainty. New
York: Routledge.
Dozor, R.B., & Addison, R.B. (1992). Towards a
good death: An interpretive investigation of
family practice residents' practices with dying
patients. Family Medicine 24:538-543.
Efran, J.S., Lukens, M.D., & Lukens, R.J.
(1991). Language, structure and change:
Frameworks of meaning in psychotherapy.
New York: W.W. Norton.
Geertz, C. (1973). The interpretation of cultures. New York: Basic Books.
Gergen, K. (1985). The social constructionist
movement in modern psychology. American
Psychologist 40:266-275.
Hoffman, L. (1990). Constructing realities: An
art of lenses. Family Process 19:1-12.
Hunter, KM. (1991). Doctors' stories: The
narrative structure of medical knowledge.
Princeton NJ: Princeton University Press.
Kleinman, A. (1988). The illness narratives:
Suffering, healing, and the human condition.
New York: Basic Books.
Meltzer, D. (ed.). (1984). Death: An anthology
of ancient texts, songs, prayers, and stories.
San Francisco CA: North Point Press.
Nuland, S. (1993). How we die: Reflections on
life's final chapter. New York: Random House.

SEABURN, LORENZ, CAMPBELL, and WINFIELD

This document is copyrighted by the American Psychological Association or one of its allied publishers.
This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.

Patterson, J.M., & Garwick, A.W. (1994).


Levels of meaning in family stress theory.
Family Process 33:287-304.
Seaburn, D.B. (1995). Language, silence, and
somatic fixation (pp. 49-66). In S.H. MeDaniel (ed.), Counseling families with chronic
illness. Alexandria VA: American Counseling Association,
, Lorenz, A., & Kaplan, D. (1992). The
transgenerational development of chronic

221

illness meanings. Family Systems Medicine


10: 385-394.
Speigal, D. (March 1993). Psychiatry Grand
Rounds, University of Rochester School of
Medicine.
Stein, H.F., & Apprey, M. (1990). Clinical
stories and their translations. Charlottesville, NC: University of Virginia Press.
White, M., & Epston, D. (1990). Narrative means
to therapeutic ends. New York: W.W.Norton.

APPENDIX
Eliciting the Meaning of the Patient's and Family's Terminal Illness Experience

What do you think is the cause of this illness?


Do you think there is a reason this illness has occurred?
How often does your family talk about the illness and its impact on everyone's life?
Who talks about it most? Least?
Do you talk to extended family about the illness? Who?
How is affect about the illness handled in the family?
How are decisions about treatment and other issues made? Who is involved in
making those decisions?
What changes have occurred in the family due to adjusting to the illness?
Have there been role changes in the family? What have they been? Whose role has
changed most? Least?
What changes have there been in daily living?
Have relationships within the family changed? If so, how?
Has your family ever faced an illness like this before? In previous generations? How
did your family cope with those situations? What have family members told you
about those experiences? Who told you?
Has your family ever had other hardships in the past? How did your family handle
them?
How do you approach the future?
How hopeful are you about the illness? What outcome do you expect?
Do you have religious or other beliefs that help you deal with the illness and its
impact on the family? What are they? How do they help you?
What are your beliefs about death and dying? What happens to people after they die?
Has your family discussed your loved one's possible death? What are your greatest
concerns?
What losses has your family experienced in the past? How does your family cope with
loss?
What will be the dying member's legacy to this family? What do you want to say to
him/her before he/she dies?
(to the ill member) Where do you want to be when you die? What arrangements do
you want made when you die? Who would you want with you? What do you want to
say to your family before you die? What are your hopes for them when you are gone?
What have you learned about yourself and your family from this experience? Has
anything "good" or "valuable" come from this experience?
How did you look at life before the illness? How do you look at life now?

Fam. Syst. & Health, Vol. 14, Summer, 1996

You might also like