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October 1999
Volume 63 |
Number 10
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| Suffering ...
The Forgotten Symptom |
Jessie A. Leak, M.D.
"We have seen the highest circle of spiraling powers.
We have named this circle God. We might have given it any name
we wished: Abyss, Absolute Darkness, Absolute Light, Matter, Spirit,
Ultimate Hope, Ultimate Despair, Silence. But never forget, it
is we who give it a name."
-- Nikos Kazantzakis--
We saw Mrs. Cantwell every day on rounds, my fellow and I. Sometimes
we made as many as six or seven visits collectively in a day to
answer her various complaints, pleas and feelings of pain, all
of which she was unable to quantify or qualify. We bonded with
her loving close-knit family, all of us in collusion to make her
comfortable and to understand why we could not "get it right."
Mrs. Cantwell was a 57-year-old with metastatic breast
cancer who was recovering from surgical repair of a pathologic
femur fracture. Her visual pain analogue scores were no higher
or lower than others, particularly after we surgically implanted
an intrathecal opioid pump. The usual complaints of constipation,
anxiety, anorexia, nausea, insomnia, depression, delirium, confusion,
social isolation, loss of mobility and spirituality were all addressed
and felt not to be at issue.
So why was Mrs. Cantwell not doing as expected? One day,
my fellow said simply and quietly, "She is suffering." We had
done all of the right things: called the chaplain for her spirit,
called the psychiatrist to rule out any anxiety/affective disturbance,
consulted social work for placement options, given her medications
to treat pain and every other side effect or symptom, and even
for extended periods sat by her bedside.
What we had failed to realize while we were doing
all of these things was that Mrs. Cantwell was at a different
place in her illness. Because her bony metastasis was not that
diffuse and because she did not have visceral metastatic disease,
we blithely assumed that her clinical estimation of survival was
greater than six months. We totally discounted the rest of Mrs.
Cantwell: her psyche, her spirit and her relatedness to those
around her who were not ready to let her go. Once we made arrangements
for her to move to a hospice and told her that she was free to
choose her course, her suffering ended. Mrs. Cantwell had suffered
because she had, in her mind and spirit, seen us take away her
final option -- death with dignity.
The Paradox of Suffering
One of the great paradoxes of late 20th century
medical practice is that while we recognize the need to view the
patient as a person, we have, in many instances,
failed. Because we are taught that evidence-based models provide
the only rational means to practice medicine, we attempt to transmute
less quantifiable aspects of our patients' issues into these algorithms.
In other words, we are still struggling with the dehumanization
of medicine; we cannot algorithmize a person. "Suffering
must inevitably involve the person; bodies do not suffer, persons
suffer. The separation of the disease that underlies the suffering
from both the person and the suffering itself, as though the scientific
entity of disease is more real and more important than the person
and the suffering, is one of the strange intellectual paradoxes
of our times."1
Contexts of Suffering
While it is true that the issue of suffering garners more
attention during the last days and weeks of life, it is a symptom
or condition that uniquely affects many of our patients at any
time during their lives. It has no Diagnostic Statistical Manual
IV definition and clearly no inception-based cohort studies have
quantified its prevalence. So why does a person suffer?
In the context of suffering, we cannot study the parts
of the person (even their psyche) in order to understand whether
or not they are suffering, and if so, why they are suffering.
This is a difficult human experience to conceptualize because
even in one individual, it can be so dynamic in character. In
essence, suffering is a state of being that is given meaning by
the individual's past, present and, in most cases, real or perceived
future. It is most often defined or perceived in conjunction with
the meaning of the patient's experience to objects, events or
relationships around them.
In other words, in a family where 10 female relatives
have died of breast cancer, for example, the experience of family
members watching yet another member of their family die of the
disease may be of overwhelming suffering. The dying patient, on
the other hand, may not be suffering, but simply fulfilling the
legacy of her dead relatives. The physician and the family may
assume suffering that is not there. Conversely, this same patient
may be suffering greatly because she is fearful for her daughters
who are still disease-free. Much of this patient's propensity
for suffering may ultimately then not only depend on the experience
of those around her, but how she was able to experience past adversity
such as watching her own mother die of the disease.
In short, each experience of suffering occurs because
of a temporal amalgamation of events unique to each individual.
This uniqueness makes predicting this condition difficult; what
might be cause for the observer based on his or her own unique
set of experiences to predict suffering may not be cause in the
patient's experience.
We must also consider the role of suffering in the context
of religious or spiritual beliefs. In Christian theology, some
feel that suffering gives the individual relatedness to Christ's
experience and possibly an opportunity for glorification or salvation.
In Judaism and many other religions, suffering may provide a means
to self-transcendence, a state of wholeness, particularly after
injury or illness. It is impossible, in most cases, to understand
the impact that all of these factors have in the development of
suffering in any given individual at any given time.
"In essence, suffering is a state of being that is given
meaning by the individual's past, present and, in most cases,
real or perceived future."
"Suffering is ultimately a personal matter -- something
whose presence and extent can only be known to the sufferer."1
It is up to us, as keen and open-minded observers, to discern
where pain and symptom amelioration end and suffering starts.
The idea that pain and suffering go hand in hand is ancient and
deeply ingrained. One does not necessarily beget the other. This
is an important distinction, for in simply treating pain, we may
fail to treat the patient whose wholeness has been violated. There
are no algorithms for these subtle distinctions.
"Suffering occurs not merely in the presence of great
pain but also when the intactness of the person is threatened
or sundered, and remains until the threat is gone or the intactness
can be restored."1
We certainly missed these subtleties in Mrs. Cantwell.
In her experience, much of her suffering was experienced in the
context of her family who was not ready to consider hospice. Her
wholeness and personhood were restored when she was given the
opportunity to make this choice. Her suffering lay in the limbo
that her "treatment" had compelled her to be in for so many weeks.
Perhaps her past experiences had been most satisfactory when she
was able to make swift, strong-minded decisions.
So Where Do We Go From Here?
We are just beginning to perceive the role that suffering
plays in the experience of living and dying. As we were centuries
ago when we struggled to understand how the body worked, so I
suspect, we are now as we begin to explore the complexities of
the person as a whole in an attempt to finally understand how
the person and the disease are interrelated. We
must meet this challenge in order to ultimately eliminate human
suffering in the face of disease.
Reference:
1. Cassell EJ.
The Nature of Suffering and the Goals of Medicine. New York: Oxford
University Press; 1991: chap 3 and 4.
Jessie A. Leak, M.D., is Associate Professor,
Department of Anesthesiology and Department of Symptom Control
and Palliative Care, M.D. Anderson Cancer Center, Houston, Texas.
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