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Welcome to the the Office of the President

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.