The family's spokesman said they need time -- a few days, he said -- to ponder the implications of what we'd said. I replied that they might not have a few days, that their loved one was so close to death that the choice might be thrust upon them within hours. "Not to decide is to decide," I said. Unless they agreed to a "do not resuscitate" order, if their loved one's heart stopped the code team would come running, tubes at the ready and defibrillators fired up. "Is that what she would really want?" I asked. The family would not budge. So we moved into disease-modification mode. We did tests and normalized abnormal values. And I kept talking with the family, since the patient herself really couldn't communicate at that point. As they raised different questions -- did the improvement in kidney function tests mean that her kidneys were permanently better? what about nutrition? -- I kept returning to what I thought was the central question: what kind of death would she have?
Thinking back, I'm sure I was trying to protect her from her family. I could see what was going to happen, but they could not. So I pushed harder than I should have. I didn't want her to have the kind of high-tech death that the family's non-decision was leading to. And they pushed back, ultimately moving their loved one to an acute medical floor and making it clear that I was "too negative" and was unwelcome at the bedside.
So her last three weeks of life included another CT scan (predictably showing further cancer growth), two surgeries to drain urine into bags on the outside (since the cancer blocked the tubes connecting the kidneys and the bladder), multiple transfusions, and many blood tests. I watched from a distance, feeling the pit in my stomach growing each day. Finally, she had a seizure. The code team was called at six in the morning to intubate her for "impending respiratory failure." The anesthesiologist literally had the tube in his hand when the patient's daughter, just barely an adult but still the designated power of attorney, screamed that they had to leave her mother alone, that she would not have wanted this, that they had to make her DNR.
So they did, and eighteen hours later she was dead.
I grieved for her then, and I grieve for her still. I lament that I could not save her from the hard death she experienced. And I feel guilty that it was partly my fault. What if I'd taken another approach with the family? What could I have said, or not said, that might have made a difference? I'm so often told that I've said exactly the right thing to help patients and families make tough choices. Why did I overreach here?
The honest answer is that I loved her.
No, no, not that kind of love. Not even a Jimmy Carter-esque "lusting in the heart" kind of love. I loved her for her courage, for her unfailing sense of humor, for her grace under pressure, for her passion about what mattered to her. (If you were to Google her name, you'd find that she was a human rights activist on two continents.) I loved her for her willingness to endure just to spend more time with her extended family. I loved her because -- as is true for most patients I've come to love and admire over the years -- she showed me what kind of person I ought to be.
We try to protect the ones we love. Sometimes we can't. In this case I didn't, as the psychiatrists might say, manage my transference very well. But tomorrow morning I'll still work to protect my patients from suffering and unnecessary pain at the end of their lives -- hopefully without overreaching.
