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My Three Teachers Continued
Sarah was thirty-five years old when she died. She had led a full and remarkable life. She had a ten year-old daughter and a wonderful and loving husband. Sarah knew that her lung disease was accelerating, and she had made it very clear that the only medical interventions she wanted were ones that would increase her quality of life. When she was admitted to the hospital for the last time, I'm not sure how either she or I knew that this was her last admission, but somehow Sara knew. She spoke with me directly about her wishes for the use of pain control medications and for who should be in the room when she died. In the past two years, she had had several conversations with her daughter about the possibility that, as Sarah would put it " Mommie won’t live forever." She prepared her daughter and her husband, as well as other members of her extended family, for her death. Now Sara was preparing me.
We discussed the use of intravenous morphine, benzodiazepines and other symptom control strategies, and we discussed in general how she "wanted things to go at the end." At the time, I was a young fellow in training in pulmonary medicine, and I'm sorry to say that none of my senior colleagues had ever prepared me to take care of a patient who was dying. We had no lectures on pain management, no discussion of the social or psychological aspects of dying, no teaching on how to help family members. Remarkably, Sarah must have know this, and so she was preparing her own, personal curriculum. As she slowly became more and more breathless, and as our efforts to reverse her lung disease were less and less effective, we continued to talk about the end of her life. She wanted to stay in her hospital room rather than go home, because she said she felt most comfortable and safe there, saying that " I've known this place all my life and it just feels right to be here at the end." During the last six or eight hours of her life, I stayed in the room, because Sarah asked me to. I adjusted medication doses to give her the most comfort I could, put a cool breeze from a fan on her face, and tried to be of as much use as I could be. As the carbon dioxide level in her blood gradually increased, Sarah went in and out of consciousness. When she was conscious for the last time, she had a tearful conversation with her daughter and husband, and asked them to leave the room. A hour later she took her last breath. It was remarkable how Sara, with her body at its weakest, was thinking of others.
For me, Sara’s death, and my medical work in helping her to be comfortable, was an unforgettable experience, but what was to come was even more powerful. Two weeks later, as he was cleaning out her desk, Sara’s husband found a letter that she was in the process of writing to the head of my department. The letter was about me. In this letter, which Sara never got to send, she described how she thought that I would make “a fine CF doctor” and that I was an example of the excellent training and care provided at my hospital. I cannot think of greater praise from anyone, and yet I wonder if Sara knew just how important a teacher she was in my CF training. Somehow I'm convinced that Sarah understood that doctors needed to learn about the patient’s experience and that the patient would be the best teacher.
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