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CHRONIC
DISEASE:
Forming Healthy Relationships
(Prepared for a community cable TV program on health,
Hosted by Dr. Hung Vu.)
William M. Buchholz, M.D.
I wear
two hats. One is as an internist, or primary care physician. The other
is as an oncologist, or cancer specialist. What these roles have in
common is that most of my patients have chronic diseases. Acute illnesses
or injuries occur, are treated or go away, and are then forgotten.
Chronic diseases occur, are treated, become less active, or are controlled,
and then may reoccur or relapse. However active they are at the time,
there is always the knowledge that they can come back. Hence, both
doctor and patient have to cope with them at one level or another
essentially forever.
Technologies like CT scans, antibiotics and angioplasties can be so effective
in treating acute illnesses the doctor can become a technician and get away
with it. There does not have to be a personal involvement of either the doctor
or the patient. The drug or the procedure does it all. With chronic illnesses,
relationships become more important.
I look at chronic illnesses like hypertension, high cholesterol, arthritis,
or cancer for that matter, in terms of a series of relationships. There is
the relationship between the doctor and patient, which goes both ways. There
is the relationship between the "owner" of the body and the body itself.
There is also the relationship between the person who has the disease and
the disease. Finally, there is a relationship between the medical system
and doctor-patient-family system.
In order to get the best use of the medical system, the least expense, and
best outcome each of these relationships has to function well
Ideally the doctor-patient relationship is a dialogue in which each person
talks to the other -- not at the other-- and listens carefully to what the
other one has to say. Communication should be based upon trust and agreement
on what the problem really is and what the goals of treatment are. Physicians
bring their scientific training, professional skills and judgment as well
as their ability to concentrate objectively on the patients' problems. Their
job is to help patients correct what can be corrected and then counsel patients
in effective coping patterns. The patients bring their problems to be solved,
their own efforts to understand the problems, their knowledge about themselves,
and a willingness to work with the physician to solve the problems.
The doctor-patient relationship breaks down when one or both talk at the
other or stop listening. If this occurs, the first task is to reestablish
the relationship, not just solve the medical problem.
When the doctor-patient relationship is working well there is a dynamic teamwork,
with each person working together to achieve better health for the patient.
The second important relationship is between the owner of the body and the
body itself. This concept -- that we own our bodies-- may be a little startling
at first, but think about it. We say, "my head aches," or "I have an ulcer,"
in the same way we would say "my car's engine needs a tune up." Implied is
that there is someone who has a body and something has gone wrong with it.
Ideally our relationship with our bodies is based upon compassion, educated
respect, a willingness to listen to our "body language," and a commitment
to maintain our bodies in the best possible condition.
The owner-body relationship breaks down when we are fearful of body signals
and either ignore them because of what they might mean (denial) or overreact
and worry about every sensation. Sometimes the balance of power is upset
and the owner forces the body to go on long after it is exhausted (burn out)
or the body's inertia prevents the owner from correcting unhealthy habits
such as overeating or alcohol abuse.
The third relationship is between the "dis-ease"and the person experiencing
it. As an oncologist I have come to understand how complex cancer is. The
wound of cancer is more complex than just the surgical incision. It includes
all the person's fears and ideas about cancer, all the cultural myths about
cancer, the threat to one's sense of immortality, and questions about the
will to live and what makes living worthwhile. Cancer affects the family,
too, with disrupted roles and activities.
At its worst, patients diagnosed with cancer will succumb to the fear and
be literally frightened to death. They may either lose the will to live or
run around ineffectively looking everywhere for a miracle cure.
At its best, at the initial diagnosis of cancer, the patient (and the doctor)
will respond to it creatively. As the Chinese word for crisis, wie dje, suggests,
there is both "danger" and "opportunity." As a crisis, cancer demands that
the danger be faced and treated effectively. But there remains also the element
of opportunity, a chance to reevaluate one's priorities, renew one's energies,
and make use of the support that is available.
In summary, then, I believe that chronic diseases must be considered as dynamic
relationships. The physician is there to provide the technology that is
appropriate for that patient under those circumstances and then educating
and supporting the patient in coping with the illness. Patients, in turn,
are expected to do what they can to prevent illness by listening to their
bodies and responding appropriately. When ill, patients need to take an active
role in self-management and share the decision process with the doctor.
Susan W. Buchholz, Ph.D. Prior to receiving my PhD in clinical psychology I worked as a Physicians
Assistant with my husband, Bill. I still draw heavily upon that training
and my knowledge of the body and the biology of chronic disease as I work
with patients as a psychologist. Teaching patients about the body's natural
healing processes, the mechanisms of their disease and the efficacy of their
treatments helps to allay their anxiety and improve their ability to participate
in their own care.
Often patients have misconceptions about their illness and fail to recognize
fully the power of their body to heal and the success of medical treatments
to improve their health. Correcting these misconceptions is particularly
important in chronic diseases because patients often see themselves as helpless
in the face of either a long lasting or terminal illness.
Patients must learn that by working with their bodies and their health care
team they can live a meaningful, high quality life.
Living with chronic illness often requires a lifestyle change. This is
particularly true for such common illnesses as heart disease, diabetes,
hypertension, obesity, migraine headaches and even cancer, where diet, exercise
and stress reduction are important. Most of the patients we see know exactly
what changes are necessary, but for a variety of reasons they can't get motivated
or are overwhelmed by what is necessary.
My work often consists of untangling fairly straightforward knots from the
past that keep patients tangled up in a life-style that doesn't work for
them. One person's knot may be to recognize her unrealistic, inhumane
expectations of herself. Another's may be to learn to say "no" to people
who expect too much from him. Yet another's knot may be to turn off the
background noise in her brain so she can focus on what she is doing at the
time. A common knot is the inability to nurture oneself in a healthy fashion.
Patients usually want to improve their health but are unaware of the programing
inside their heads that sabotages their efforts. Unraveling these knots empowers
patients, increases their self esteem and reduces excessive office visits
to the doctor.
Much can be done to help patients cope with potentially terminal illnesses,
either the impact of the diagnosis or the effects of the rigorous treatments
necessary to control the disease. Patients deserve support in order to live
a full life, feel they are worthy of love, and are attractive regardless
of how much hair they have lost or the shape of their body. Without this
support patients may become depressed and anxious, neglecting their diet
and exercise, becoming less compliant with treatment.
Unfortunately, with all the popular press on the effects of stress on illness,
some patients have come to blame themselves for their cancer. This is an
untenable situation. The appropriate question to ask is not "who is to blame?"
but "what can I learn from this?" and "what do I want to change now?"
Frequently patients need to clarify what they want in their life. Chronic
illness can be seen as a signal for a "course correction" or as a teacher
rather than a monster out of control. With help and encouragement patients
can identify what they need to heal and then, what may be an even more difficult
job, ask for support to actually achieve what they need to do. The good news
is that I see many couples and families that do come together under the stress
of a chronic illness, do identify the patients' needs, and then work
constructively as a team. Sometimes they need to improve communication between
themselves. Sometimes they learn to communicate more effectively with their
doctors so they can ask for support more directly. The doctor has fantastic
skills and tools that can serve patients. Patients must communicate where
they are and how they can best be reached.
Chronic illness requires more than just medication. Patients must overcome
unconscious behavioral traps that keep them stuck in the illness
and so become empowered to participate more fully in their health
care.
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