The Gift of a Relationship
by Dr. Katharine Treadway
Mr. H. was as meticulous in his dress as he was in the care of his body, and he always appeared in my office elegantly attired, usually with the New York Times folded neatly under his arm. When I first met him, he was recovering from an episode of renal failure precipitated by bladder outlet obstruction. He had mild hypertension and was very concerned about his health in general and his kidney function in particular. He always called me the day after each of our appointments to get the results of his BUN and creatinine tests, which he carefully recorded in a small notebook kept specifically for documenting his medical condition. When I asked him to follow a low-salt diet, he did so painstakingly. With the help of this diet and his regular, vigorous exercise program, he gradually returned to his previous state of good health. He clearly enjoyed this accomplishment and his sense of physical well-being.
Over the next several years, he remained well. The notebook was less in evidence, and the worries over his kidney function faded. During that time I became the physician for his wife and his two grown children.
Shortly after his 68th birthday, Mr. H. developed angina. His stress test was markedly positive, and coronary-artery bypass grafting was recommended. He sailed through his surgery, but despite a rather easy hospital course, it was clear he hated being a patient. I went to see him one evening shortly before he was ready to leave the hospital. He was sitting, looking out over the lights of the city. He seemed lost in thought. I sat down next to him and quietly asked him how he was feeling. To my surprise, and I think to his, he began sobbing. We sat together for a long time as he poured out his frustrations and terrors. He hated the loss of order in his life. He hated losing his health and feeling weak and out of control.
He went home and recovered. Almost. His strength returned, and gradually he was able to resume the vigorous exercise he enjoyed so much. Everything returned to normal except his blood count. He had been quite anemic after his surgery, and for a while his counts slowly improved, but then the improvement ceased. His white count was low, his platelets borderline, and he was mildly anemic. A bone marrow test revealed myelodysplasia. The small notebook reappeared, this time to track his blood counts. Because he was the type of patient who researched his illnesses extensively, he knew that the most likely outcome was that one day he would undergo a leukemic transformation. He continued his daily routines, his import business, his beloved exercise, and his trips to his summer home in Cape Cod. A year or so passed.
One day, he came to see me for a routine check, as always immaculate in his three-piece suit and starched shirt, with the ever-present New York Times tucked under his arm. He felt well and looked well. But the next day his white count came back at 24,000. I called his hematologist and arranged to have him seen for another bone marrow biopsy. Then I called Mr. H. I told him about his white count and that he needed to have a bone marrow aspiration again. He understood immediately what we were looking for. He did not ask any questions, saying only he would be there the next day. I asked him to call me after his visit to let me know what the hematologist said. He called me the next evening. Not surprisingly, he had acute myelogenous leukemia. He had two choices. He could undergo a six-week course of inpatient induction chemotherapy; if he survived the treatment, he would have a 20% chance of remission that would last at most a year. Or he could do nothing.
"And if you do nothing?" I asked.
"I have two days to two weeks to live," he replied.
I was stunned.
He then asked, "What do you think I should do?"
"What do you want to do?" I asked gently, although I already knew what his answer would be.
"I want to do nothing."
His wish was consistent with everything I knew about him. I could sense his wife on the other end of the phone, silently begging me to argue with him, to tell him he should go through anything to stay alive. But everything I knew about Mr. H. told me that doing nothing was the right decision for him. Later that evening I spoke to his wife, his daughter, and his son. They understood what he wanted and were ready to support him. We arranged for hospice. The family gathered.
Within a week his hematocrit had fallen to 10%.
"The hematologist wants me to have a transfusion. He thinks it will make me feel better. Should I do it?"
"Yes," I said. "It may well make you feel better. It's worth a try." He received three units of blood at the hospital and went back home. I went to see him at home the next day. His wife opened the door, her face tight with worry and grief. "He's upstairs in the study." I climbed the stairs, and when I opened the door, he was sitting in his bathrobe with nasal oxygen. I was shocked by his appearance. Only ten days ago, he had walked into my office looking and feeling entirely well. Now his flesh hung on him, his face was gaunt and sunken, his nose and lips crusted with blood. We were alone. His wife had not followed me upstairs.
No, the transfusions had not helped. No, he did not want more of them. We talked for a long time, and I tried to understand what he needed from me. It became clear that he wanted to be allowed to die, but he did not have the physical or emotional strength to argue his case with his family. He loved them desperately. How could he tell them he wanted to die? I understood that my job would be to broker his death with his family. They had rallied mightily; but his condition had deteriorated too fast for them. They had not had time to accept the imminence of his death.
I asked the rest of the family to join us. Mr. H. sat in his wing chair to my left. I sat in a chair along the wall, and his wife and two children sat on the sofa to my right. I began by saying that he did not want to continue with the blood transfusions.
"But Daddy, don't you want to stay alive? Last night we looked through all the photo albums together. Wasn't that fun? Didn't you like it?"
He nodded weakly.
The conversation continued. I could feel his wife's anguish every time I expressed his wish to let go. They so much wanted him to keep fighting. Finally, while he was in the bathroom, I said, "He is dying. He has begun this final journey and you are asking him to put on the brakes, to turn around and try to live, even though he knows that he is at the end and that he can't live no matter how much he wants to, no matter how much he doesn't want to leave you. You have to go as far as you can with him and then let him go." I was able to have this conversation with them only because I was certain of what he wanted -- both from our conversation and from my years of knowing him. And my long relationship with his family helped. They knew me and trusted me. His family was silent as he came back into the room. We watched him walk slowly and with great effort to his chair. His daughter looked at him for several long minutes and then turned to me and said, "I guess I have to understand this by remembering our big family reunions on the Cape. When they were over, some people said goodbye and left, and some people said goodbye and lingered. Daddy always said goodbye and left."
Mr. H. died at home two days later - the way he wanted, surrounded by the family that loved him. I still take care of his wife and two children many years later.
Dr. Katharine Treadway is the Gerald S. Foster Academy Associate Professor of Medicine at Harvard Medical School and a general internist at Massachusetts General Hospital.