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The editors asked several experts to share their perspectives on the crisis in U.S. primary care. Their articles, which address this crisis from six different angles, follow. We also brought the five U.S. contributors together for a roundtable discussion of the problems and potential solutions for training, practice, compensation, and systemic change. A video of the discussion and reader comments can be seen at www.nejm.org.
"A growing chorus of discontent suggests that the once-revered doctor–patient relationship is on the rocks."
New York Times, July 29, 2008
With its combination of care for acute, undiagnosed illness and complex, multisystem disease, as well as the provision of extensive preventive care, all in the setting of a long relationship built on mutual trust and knowledge, primary care has long been a deeply rewarding profession. But in recent years, this once-extraordinary specialty has seen its ranks diminish as doctors struggle with an increasing amount of paperwork, the explosion of therapeutic options, and a dramatic expansion in preventive care responsibilities. Care is increasingly fragmented, leaving patients angry and doctors frustrated. The time demands have exploded, which has eroded everyone's ability to develop the personal, long-term relationships that are a great source of satisfaction for providers and comfort for patients. Such relationships can be instrumental in providing effective and efficient care.
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My 12-year relationship with one patient and her family had a profound effect on care at the end of her life. When I met Mrs. C, she told me, "I am 82 years old. I have lived a good life. I am ready to die. Please do not do anything to prolong my life." As it turned out, her only medical problem was hypertension. We negotiated an agreement that she would continue to take her medication. She came to see me a few times each year. Occasionally, a new problem necessitated another discussion about not doing "too much." By the time she was 94, she had become quite frail. She no longer wanted to trek into Boston, but she did not want a local doctor. She wanted a visiting nurse to see her occasionally and report to me. She reminded me of my promise not to "do anything." She gradually weakened and spent an increasing amount of time sleeping.
Then one day her nurse called me. Mrs. C's systolic blood pressure was 90. She wouldn't get out of bed. She wasn't eating. She didn't want to have blood work done or come to Boston. Her family supported her decision. I was torn. She had been very clear about her desires, but what if this was something simple that I could treat? I knew I had to abide by her wishes.
Soon, she developed a fever. Suddenly, her family wanted to bring her in. She refused. Her temperature rose higher. She was no longer responsive. I heard the anxiety in her daughter's voice as she reported this latest development. I offered to come see her that night.
When I arrived, 22 family members were waiting. The anxiety was palpable. Mrs. C was unconscious in a bed in the front parlor. I greeted the relatives, some of whom were also my patients, and went to examine Mrs. C. She was dehydrated, unresponsive, burning with fever. She would clearly die unless I did something drastic. In my mind, I could hear my patient's clear and consistent instruction. I laid my hand on her hot, dry forehead and silently said good-bye.
Then I sat down with her family. "Shouldn't we take her to the hospital?" "What about giving her oral antibiotics?" "We can't just let her die here." The questions poured over me. I said she was quite near death and that to have even a remote chance of reversing her condition, we would have to take her by ambulance to the hospital, draw blood, do cultures, and give fluids and IV antibiotics. It was unlikely to be successful. I reminded them that she would not want to go to the hospital. I talked about how hard it is to do nothing but said I believed that by being here with her and allowing her to die as she had asked, they were doing something very important: respecting and loving her. How better to die than at home, surrounded by her loving family? We talked about what might happen as death neared. "We don't know how aware she is," I said, "but in my experience with unconscious ICU patients, it seemed patients knew when those they loved were near." I suggested they be with her, talk to her, say their good-byes. I gave them a prescription for morphine in case she became uncomfortable and said they could page me at any time.
Then I left. The room was calm. People were hugging each other. I had walked into a room of fear and anxiety and left a room of peace — not because of me, Kate Treadway, but because of my role as physician. Had I been the neighbor and said the same thing, it would not have mattered.
Two hours later, the family paged me. Mrs. C had died peacefully. After I left, her family had gathered around her bed, telling stories, laughing, and crying. They had sung her favorite hymns as she slowly stopped breathing. Later, one of the letters I received from her family said, "Without your presence, this moment would have been very difficult for all of us. . . . The firm guiding hand of the doctor was felt."
I could not have been my patient's advocate if I had not known, deeply, that I was doing as she wished. I would not have been "the guiding hand" for her family without their trust. For me, this is the essence of primary care: comprehensive, longitudinal, and relational. Our challenge, as we redesign primary care, is to ensure that we continue to nurture this relationship, which is at the heart of effective medicine.
No potential conflict of interest relevant to this article was reported.
Source Information
Dr. Treadway is on the faculty of Harvard Medical School and in the Department of Medicine at Massachusetts General Hospital — both in Boston.
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