We Should Let Dying Patients Write Their Own Final Scene
Berman, Joel C., Medical Economics
There is an ancient Eastern adage that says, "When the student is ready, the teacher will appear." Several years ago, a patient I'll call Lilly French came to me with an important lesson, but it wasn't until a year after her death that I was ready to learn it.
Lilly was a patient of my colleague, Jim, like me an FP. As the on-call physician for our group, I admitted her to the hospital one Sunday for congestive heart failure. Several volumes of hospital records attested to her many similar admissions the previous year, and serial echocardiograms documented the inexorable decline of her left ventricular function.
As I reviewed her records, I came across Jim's eloquent summary of her wishes for terminal care. He described a feisty widow of two decades who had fashioned an independent life. Over the years, she had come to measure the quality of her existence by her self-sufficiency. She told Jim that if she ever required the custodial care of strangers, she would just as soon be dead. A copy of her living will was in the chart.
When I examined Lilly, she was close to death. Illness had ravaged her, melting the flesh from her bones. Getting her home, even for a few more weeks, seemed implausible. I wondered whether she had reached the point at which further therapeutic intervention would violate her directive. "I'm dying, aren't I?" she asked, pre-empting my silent rumination.
Her eyes locked onto mine. Intending to gently tell her the truth, I started with a string of platitudes, a lifeline to grasp if she wanted. "Every case is unique . . . one can never predict . . . only God knows for sure," I said.
But she quickly dismissed my indirection with a weak shake of her head. She knew that this time she wasn't going to get better. "I'm ready to die," she said simply.
We talked into the afternoon. By the end of our conversation, I was certain she knew what she wanted. As I left the room, I assured her I would do whatever necessary to keep her comfortable.
At the nursing station, I felt relief as I wrote her admitting orders. Her clear directive had freed me from the need to orchestrate any heroic intervention. Lilly's choice played to what I considered one of my strengths: providing comfort care for dying patients. I agonize when patients or their families ignore hopeless odds and request aggressive, all-out intervention.
Lilly didn't die that night, however. The next morning during sign-out rounds, I began to relate to Jim my conversation with Lilly. But he quickly interjected that he'd just returned from her beside and had heard a different story. Lilly wasn't about to give up, he claimed. She wanted whatever it took to get her home.
Surely Jim had heard wrong. I tried to argue him back to reality, but he was certain that I was the one who was mistaken. After several minutes of fruitless debate, we concluded that Lilly must have changed her mind. Maybe she had been influenced by a night nurse. Perhaps she had remembered important unfinished business. In any case, my weekend duties were over. With a busy Monday ahead of me, I decided to let go of the matter.
Remarkably, Lilly survived her hospitalization. She managed to get home for one more month before dying peacefully in her sleep.
My memory of our encounter soon faded.
A year after Lilly's death, Jim had tears in his eyes. He and I were sitting with eight colleagues in a weekly session of our physician support group. Since 1984, we've been meeting under the facilitation of William Zeckhausen, a professional counselor. We started the group as a forum for exploring psychological aspects of the doctor-patient relationship, but over the years the scope has expanded to include personal and family issues as well. For many of us, the meeting is a highlight of our week.
Jim had the floor and was telling us about the impending death of his patient and friend, Charlie, whom he had admitted the previous night. …