Although it was only mid-afternoon, her hospital room was darkened when I entered. This was the hour of patient rest and serenity. Patient K lay on her bed covered by a blanket, resting comfortably. Her husband, as always, was sitting patiently and silently nearby. Patient K was in her mid-70s. I had been her cardiologist for about one year. She had multiple medical problems including an irregular rapid heartbeat (atrial fibrillation), high blood pressure (hypertension), chronic obstructive lung disease and chronic liver disease (cirrhosis). She was hospitalized because of the rapid accumulation of fluid resulting in marked swelling of her legs (edema) and abdomen (ascites). The source of this swelling was cardiac. Once hospitalized, she responded nicely to intravenous diuretic treatment. Her swelling and her weight both decreased dramatically. During this hospitalization she was also being evaluated for her two other serious chronic lung and liver conditions.
Several years ago Patient K and her husband had each lost their first spouse. They and their spouses had been friends for decades and traveled in the same social circle before they married. She had a genuine zest for life, enjoyed spending time with both her own and her husband's children. She loved to travel and to spend additional time at their vacation home in the Adirondacks. She was short in stature, and of normal weight. Patient K still retained aspects of her youthful beauty. She had a sweet round face that exuded both warmth and intelligence. The first time I examined her I noticed a small martini glass tattoo above her left ankle. The finding of this unexpected body art surprised me. In spite of her awareness of the medical implications, Patient K continued to smoke heavily and to consume substantial amounts of alcohol daily. Neither habit was suitable medically, particularly in view of her very significant cardiac, lung and liver disease. I had tried unsuccessfully on several occasions to get Patient K to alter her habits.
After our brief chat I asked if she had as yet seen her lung and liver doctors. She stated that she had. When I asked if they had discussed her life style, specifically her smoking and alcohol habits, she initially looked at me rather coyly. Her response was then sharp and unequivocal and left little room for discussion. There were limits to how much she was willing to compromise. She would work on gradually stopping smoking, but she would continue having at least one martini each evening. She clearly understood the medical risks she was taking, but she also truly loved her current way of life. She then stopped and looked directly at me, awaiting my response. I tried to engage her on this issue once again. What she planned was against my recommendations and was potentially very harmful to her well-being. I asked her if she would reconsider. Patient K would have no part of it. Her course was set. Our eyes met and remained firmly fixed on each other for several seconds. I then nodded. She was anxious to hear more. With a smile, I said that although I strongly disagree, I would respect her wishes. Furthermore, if she wished, I would still be her doctor. A warm smile crossed her face. Her facial stress lines diminished immediately. We talked further. When I left she embraced me warmly.
Patient K kept her word. She did stop smoking and she also did continue her martinis. Over the next year I saw her regularly for several office visits. On each visit her degree of warmth and connectivity were palpable. She appeared relaxed and serene. From a clinical standpoint, she was actually doing well. She and her husband were enjoying themselves, traveling and spending quality time with their families. Then a year after the hospitalization she died suddenly.
Did I do the right thing? Was I an enabler to her demise? Would other care givers have behaved differently? In the end I was comfortable with what I had said. Individuals and patients have a fundamental right to autonomy. This is a basic tenet of medical bioethics. We can chart a course of treatment for illness, but we cannot force patients to adhere. The physician's role is to assist and to accompany patients on their journey, while always trying to chart what is presumed to be the most appropriate medical course. A healer is not a parent and a patient is not a child. There is no place for paternalism in modern medicine. Respect for patient choices is extremely important. In this instance, medical ego and medical self-image must be left at the door, far from the bedside. Perhaps even more important, physicians should not abandon the patient who does not adhere to their recommendation. Those ill may feel abandoned by fate; they should not also be abandoned by those caring for them. Fear of loss of their doctor is an important concern and source of major anxiety for patients who do not agree with or don't adhere to their physician's proposed plans.
Could Patient K have lived longer if she had completely altered her life style? Perhaps. I'm not really sure. Any attempt to answer would be based on biased conjecture. I do know that her last year was spent filled with happiness and not remorse, joy and not guilt. She was quite an intelligent woman. She fully understood what she was doing and knew the potential consequences of her action. For Patient K, quality of life, on her specified terms, was most important.
I will continue to recommend the best medical care for those I treat. I will indicate why I think such care is appropriate. But I will respect their right to autonomy, and I will not abandon them if they choose a different path, even a potentially more harmful option.