"What would Joanna have wanted?" the ICU fellow (Dr. Smith) asked Sam, Joanna's nephew and health care proxy, for the second time this week. Sam considered the question, furrowed his brow, and said, "I still don't know, doc."
Dr. Smith, Sam, and I stood at Joanna's bedside. Sam, a young man of only 20, looked tired and worried. Joanna had been on our unit for close to a month. With advanced scleroderma and systemic lupus erythematosus at the young age of 44, Joanna was dying. She was in multisystem organ failure, requiring mechanical ventilation, continuous dialysis, and vasopressors. Her fingers, peeking out from under the white hospital blanket, were skeleton-like, black and necrotic from long-term vasopressor use. Her toes and lips had suffered the same fate. She breathed slowly, only when the ventilator required her to; a continuous dialysis machine took up half of her ICU room. She was probably in pain, with no medication on board because of her low blood pressure. The word "torture" came to mind.
"Okay, Sam, I'll give you some time and come back," Dr. Smith said at last. He patted Sam on the shoulder and walked out of the room.
Sam and I went on standing there in silence. How do I make him understand that this is torture? I wondered. How can I get him to understand that it is okay to let her go? I knew Sam was struggling to discern what his aunt would have wanted. As so often happens, they had never discussed how she wanted to die. Asking Joanna now was out of the question. Sam was afraid to make the wrong decision for his aunt.
Maybe he doesn't fully understand her medical condition, I thought. As I turned to Sam, about to speak, he gave me a knowing look. "I know she's very sick," he said. "I just don't know what she would've wanted."
I thought for a moment and realized I didn't know either and shouldn't assume that I did. So, the question then became how to figure what Joanna would have wanted. It occurred to me that I didn't know Joanna at all-but Sam did.
"Sam, tell me about Joanna," I said.
"What do you mean?" he asked. "Like when she got really sick, or[horizontal ellipsis] ?"
"No," I said gently, "tell me about what Joanna was like before she was in the hospital."
"Why?" he asked.
"Humor me," I said.
Sam smiled. "Okay, well, oh goodness, was she a hoot. Always had something to say about everything and anything[horizontal ellipsis] school, your girlfriend, your choice of outfit." He laughed. Sam continued to talk about his aunt Joanna and I listened, delighted to hear about the real Joanna.
"She always had to have her nails perfectly done," Sam went on. "She would go nuts if they weren't perfectly polished. Red polish. And oh man, was she a fan of dancing. Not that she was any good[horizontal ellipsis] but she loved it!"
It was nice to imagine Joanna dancing instead of lying in bed. I envisioned her fingers and toes, healthy and with nails freshly polished red. Joanna would not enjoy her new fingers and toes, I thought, nor would she dance again.
Sam's face suddenly changed from delight to devastation and shock. He seemed to be having the same thoughts as me. "Oh God," he said, "she would hate this. All of this."
I looked at him and said, "I think that may be your answer then, Sam."
Later that day, Dr. Smith held a meeting with Sam and several other family members. Dr. Smith explained that the mechanical ventilator, dialysis, and vasopressors were keeping Joanna alive. Unwilling to take away Joanna's ability to breathe, Sam and his family decided to withdraw the dialysis and vasopressors. Care was withdrawn at six that evening, and Joanna died several hours later.
Sam and Joanna are still with me, nearly 10 years later. We had continued to ask Sam a question he could not answer. At the same time, I had assumed I knew the best solution for Sam and Joanna. Yet I knew nothing about Joanna, not where it mattered. I realized we may have to ask more about patients' former selves to envision their best futures. In this scenario, I asked Sam about Joanna's life to understand what was best for her care and, ultimately, her death. What if Sam had told me Joanna had always said she wanted to live to be 100, no matter what?
Get to know patients' former selves. Ask different questions. Discover their answers. I am so glad I did. Now, when I think of Joanna, I picture her with brightly colored red fingernails and toes, dancing the night away, and I know we did what Joanna would have wanted.