Lessons in Caring
AOA Banquet Address
April 6, 2000
Thank you for that
kind introduction. It is a great honor for me to have the opportunity
to share a few thoughts with you this evening. Let me begin by congratulating
all of the new inductees on their election into Alpha Omega Alpha. Membership
in this society recognizes your outstanding academic performance and is
one of the highest accolades that we can bestow upon you. Please know,
however, that tonight is as much about your future promise as it is about
your past achievements. Assembled in this room are tomorrow's leaders
of medicine in South Carolina and beyond. It gives me great comfort that
our profession will be in such capable hands.
Turning now to the
focus of my talk, I would like to begin with a brief case history. The
patient in question presented a number of years ago with a chief complaint
of a chronic, non-productive cough. He was a 64-year-old university professor
who was a life-long non-smoker with no significant prior illnesses. He
was evaluated by an otolaryngologist who noted some inflamed tissue in
the posterior pharynx, which he biopsied. A chest radiograph revealed
a solitary pulmonary nodule that was not present on earlier films. The
pharyngeal biopsy revealed no evidence of malignancy, but tracheobronchial
washings revealed cells that were suspicious of malignancy. Liver-spleen
and bone scans were negative.
The patient underwent
a right upper lobectomy. The surgical pathology revealed a primary adenocarcinoma
of the lung with spread to multiple mediastinal lymph nodes. The patient
underwent a post-operative course of radiation therapy to the mediastinum.
A follow-up bone scan several months later suggested several possible
metastases, which was confirmed in one site by a bone marrow biopsy. A
course of multi-agent chemotherapy was prescribed and completed with the
typical side effects of alopecia and nausea, as well as the development
of a somewhat more unusual peripheral neuropathy.
The patient experienced
some temporary relief of symptoms of bone pain, but he became clinically
depressed. A psychiatrist was consulted and provided counseling and pharmacological
treatment. A few months later, however, he developed persistent headaches.
A CT revealed a metastatic lesion to the brain, which was treated with
radiation therapy. Despite this treatment, the patient's condition continued
to deteriorate. He developed progressive weakness, lethargy and weight
loss. His pain became unremitting, for which he was treated with oral
morphine. He became severely depressed and progressively diminished his
activity and food intake. His wife provided his terminal care at home,
with assistance from a visiting hospice nurse. He died of a respiratory
arrest at home, eighteen months after his initial diagnosis.
In many respects,
the history of this patient's illness was typical of the clinical course
for persons with this disease. Each year, about 170,000 Americans are
diagnosed with lung cancer, many of whom have regional or remote dissemination
of disease at presentation. Treatment involves surgical excision of the
primary lesion when appropriate, combined with radiation therapy to sites
of dissemination and chemotherapy for systemic disease. For most histological
types of lung cancer, however, the prognosis is poor, with a median duration
of survival under two years.
The patient that I
described was unusual in one respect„he was a life-long non-smoker. As
we all know, the vast majority of lung cancer patients„about 95%„are current
or former tobacco smokers. The relative rarity of lung cancer among non-smokers
may lower the index of suspicion at initial presentation, and indeed may
lead to a delay in diagnosis. The patient that I described was unique
in one other respect—at least to me. He was my father. His illness occurred
four years after I graduated from medical school. By that time, I was
a faculty member in a Department of Community Medicine, and ironically,
my research was focused on cancer surveillance and epidemiology. This
episode, however, was my first encounter with a serious illness in one
of my immediate family members. Through my father's bout with cancer,
I learned things that I had never been taught as a medical student or
a resident. Arguably, these lessons cannot be learned in any way other
than through personal experience. I have not talked about these experiences
in any other public setting before. My goal tonight is to share some of
these lessons with you. Although no talk can do adequate justice to such
a complex topic, my hope is that these personal reflections will stimulate
you to think a little differently about your patients and their families.
First and foremost,
as physicians we are taught about the basic pathophysiology of disease,
its diagnosis and treatment. We tend to focus on the lesion with rapt
attention, often to the neglect, intentional or otherwise, of the person
behind the illness. The team of surgical, medical and radiation oncologists,
for example, is locked into an armed conflict with the cancer. Success
or failure is measured in terms of tumor progression and metastasis. No
doubt these are important dimensions. This was not the only battle that
my father was fighting, however. At a certain point, it was not even the
primary battle.
Once the initial shock
of the diagnosis wore off, the greatest challenge that my father faced
was being in a situation over which he had no apparent control. He was,
after all, a self-made man. Born in modest circumstances, educated on
scholarships, he went on to become in turn, a decorated officer in World
War II, a groundbreaking public health researcher and an accomplished
academic administrator. He had prevailed in every life circumstance—until
he was diagnosed with cancer.
At first, he fought
back bravely, and without fear or hesitation. As the illness wore on,
however, and one bit of bad news was followed by another, he was stripped
of his aura of invincibility. The person who had always been the rock
of our family suddenly was placed in a dependent position. It was painful
for me to watch, but even more painful for him to experience. As great
as the physical toll was on him, it paled compared to the emotional devastation.
He became profoundly depressed.
The interplay between
his psychological state and his physical state became very evident to
me. The spread of the cancer left him feeling more helpless and hopeless,
which in turn reduced his ability to fight the malignancy. It became a
vicious cycle that neither he nor his caregivers could break. While his
death certificate lists lung cancer as the underlying cause of death and
a respiratory arrest as the final event, my father died two months earlier
from a collapse of his spirit. He literally lost the will to live — a
diagnosis that is found nowhere on his death certificate and for which
there isn't even an International Classification of Diseases code.
For me, there were
several lessons to be learned from this experience. First, there is a
powerful interplay between the mind and the body in responding to a significant
physical illness. To treat the physical manifestations without addressing
the psychological dimensions will limit the effectiveness of the care.
Second, addressing the emotional aspects of a life-threatening illness
requires considerable time, interest, and skill. You have to get to know
the patient as a person, not just as a chassis for the illness. The clinician
has to listen more than talk both to the patient and to the patient's
family. The family members are useful because they have a sense of the
patient's emotional baseline and may be able to convey information to
the physician that the patient will not provide directly.
Third, our unrelenting
emphasis on duration of survival must be tempered with a sense of the
quality of life provided. Delaying the time to death can actually have
a negative impact on the patient and their family by protracting both
physical and emotional suffering. Aggressive treatment is not always optimal
management, as we all recognize from the Hippocratic invocation to "do
no harm."
Nevertheless, we are
trained as physicians to view death as the enemy. For example, we are
inclined to refer to death as "losing" a patient. When death is equated
with losing, physicians will fight it at all costs. Sometimes those costs
are just too high.
Finally, my father's
illness taught me about the toll that such an episode can take on the
members of the patient's family. Of course, I was aware of that aspect
of illness at some level from my clinical training. Nevertheless, until
I experienced a significant illness in a loved one, my perspective on
this topic was quite limited. The impact was particularly great on my
mother, who nursed her husband through all phases of his condition, including
the final painful weeks. As I lived at a distance, my contributions were
more sporadic. I flew home every other weekend for the final two months,
allowing my mother brief respite from her care giving. She was physically
and emotionally drained—a state from which she did not recover fully for
at least two years after my father's death.
I cannot honestly
identify anything that could have eased this burden on my mother. She
was determined to care for my father at home and to provide as much as
possible of this care herself. Nevertheless, it is clear to me that our
health care delivery system is not geared toward providing support to
family members of patients. As we move toward shorter hospital stays and
more outpatient services, we place an increasing load on family members.
Even those with strong social support systems and adequate fiscal resources
may be overwhelmed by these responsibilities. Just imagine the impact
on those who do not have the benefit of these advantages.
These then were the
four lessons that I learned from my father's battle with lung cancer.
First, never underestimate the importance of emotional well being on the
course of a physical ailment. Second, take the time to get to know your
patient as a person. Listen to the patient and their family members for
clues about the emotional dimensions of the condition. Third, do not confuse
prolonging life with therapeutic success. The quality of a patient's existence
may be far more important than its duration. Finally, be alert to the
impact of a patient's illness on the immediate family members. Try to
assure that appropriate support systems are in place for the caregivers
in the family.
In closing, I applaud
you again for what you have accomplished academically. As you look forward
to your careers in medicine, please remember that your best teachers may
not be more senior clinicians. The best instructors may be your patients
and their families. Listen carefully to them. Try to view their illnesses
in the full context of their lives. Treat their emotional well being with
the same care that you devote to their physical well being. Allow them
to partner with you in establishing treatment goals. Attend to the needs
of family members with concern comparable to that which you show for the
patient. If you follow these guidelines, I trust that your patients will
be well served. Equally important, these suggestions should promote your
own satisfaction in delivering care. May you meet with success in all
your endeavors. |
