It was standing room only in the small pink conference room on the first floor. Doctors, nurses, social workers, medical students and a physical therapist crowded in to meet with Sasha*.
Sasha’s sister, Liz*, was hospitalized nearby. At 57, she was haggard in a hospital gown, hair matted, cheeks sunken. She stared numbly at the TV. Years of alcoholism, an all-consuming eating disorder and a recent overdose had left her lost somewhere between dementia, delirium and encephalopathy. Brain imaging showed a severely atrophied brain; I imagined a layer of smoke hung over the hills and valleys of her cortex.
Liz could speak, and sometimes she made sense, but she could not follow the sense of a conversation or understand complicated questions. She needed help 24/7 – help with bathing, dressing, walking, even going to the bathroom.
Liz had been brought to the hospital by friends found her at home, unconscious in her own feces. Beer cans and pill bottles littered the floor. She had a deep pressure sore on her back, down to the bone. A day or two longer and she would have been dead.
Sasha, the patient’s sister, was determining if Liz should have surgery. Not for the pressure sore, although that day might come. We were there to talk about whether Liz should have a feeding tube placed into her stomach against her wishes.
Liz wouldn’t eat. “No carrots,” she might say, swatting the dinner tray to the ground. Or she would turn her head left and right as the nurses tried to coax a spoonful of pudding past tight lips. Despite constant nursing care, Liz was going from scrawny to skeletal right in front of us. Intravenous nutrition had been started – Liz had not protested, perhaps because she did not understand what it was – but it was a temporary fix. The best alternative to oral nutrition is a feeding tube inserted surgically through the wall of the abdomen and into the stomach. It allows the body to absorb nutrients more naturally and effectively.
Liz adamantly refused the feeding tube. “No, never,” she said consistently when the topic came up. She covered her abdomen with her hands. A psychiatrist, however, had confirmed that Liz was not competent to make her own decisions – she could not express understanding of the risks or benefits of the procedure, or of withholding it.
That was where Sasha came in. Months before her overdose and hospitalization, Liz had signed an advanced directive appointing Sasha as her durable power of attorney for healthcare (DPOAHC). Now that Liz could not decide for herself, Sasha was Liz’s voice. This was ventriloquism, by phone.
We updated Sasha on her sister’s condition, emphasizing the general threat of malnutrition and in particular how it was keeping Liz from healing her large pressure sore. We described Liz’s refusal to eat, the nurses’ herculean efforts to help, and also Liz’s inability to make decisions for herself.
Sasha was warm, polite and bright. She asked probing questions. She told stories of Liz’s wild parties, her one-night stands, the decades of struggle over food. “Control has always been a big issue for her,” Sasha said.
The team recommended a feeding tube. At first Sasha demurred, pointing to Liz’s refusal. But the psychiatrist clarified that Liz did not have decision-making capacity to refuse the procedure, so we relied upon Sasha. Sasha seemed to understand, and said she didn’t want Liz to starve. She asked what the procedure would entail, and what future steps in Liz’s care would involve. We discussed eventual transfer to a nursing home, and said we doubted Liz would ever care for herself again.
Then the conversation took an unexpected turn.
A nurse practitioner asked Sasha what Liz would have wanted had she been able to face today’s decision with a clear mind. Sasha said “Well, that gets kind of complicated.” She described Liz in her heyday: happy go lucky, bubbly, charismatic, flitting from party to party, friend to friend, bed to bed. “She was a bundle of light some days, and a total wreck on others.” One major source of strife with the family had been around Liz’s eating disorder – so many family meals had broken up in acrimony over food intake and control. “One thing is for sure,” Sasha said, “My sister would never want to be cooped up in some stinky hospital. She’d rather die.” She paused. “No offense,” she said, chuckling.
The room went quiet. Not because we were offended – we can’t smell the hospital smell anyway. But because we all knew that Liz would never be the life of the party again. Liz might improve a little, but permanent institutionalization with round-the-clock nursing support would be the best we could offer. If Liz would not want this life, then the feeding tube we were discussing might not be right. Sasha had just said Liz would never want the feeding tube. And yet Sasha had warmed to the idea herself.
Sasha recalled Liz’s eating disorder, her perennially thin frame, the family squabbles over food. “It’d be so wonderful to see her healthy and strong again,” Sasha said. It felt like she had just realized the checkmate move in a decades-long chess game about food. It was completely understandable. But not what Liz would want.
This is when I stepped in. I introduced myself as a physician and a clinical ethicist, and said how much we sympathized with both Sasha and Liz. Then I clarified a key concept in bioethics: surrogate decision-makers like Sasha must make decisions based on the preferences of the person they represent and not their own preferences. Sasha needed to choose what Liz would choose, even if we all understood why Sasha was tempted to nourish Liz against her will.
“I hear you,” Sasha said, “And I appreciate the work you are all putting into this.” She sighed, and said, “But I’m not sure I agree.”
Sasha cited Liz’s previous history of suicide attempts. Liz had not been openly suicidal prior to being found unconscious in her apartment. There was no note. But we all wondered if she had tried to kill herself. Sasha said, “If this whole thing is a suicide attempt, is withholding the feeding tube basically us helping her kill herself?”
This was a harder question. Suicidal patients do lose the ethical and legal right to choose death. And yet patients who were suicidal at one time do not lose the right to make life-and-death decisions for themselves in a saner moment. Therefore we had to ask how well we knew Liz’s frame of mind leading up to her hospitalization, and what Liz would have decided about a feeding tube surgery on a good day when life felt worth living.
We revisited a number of related questions. Was Liz competent at the time she appointed Sasha her DPOAHC? Yes. Was it likely Liz would regain decision-making capacity? No. Did Sasha have the legal right to withdraw nutrition even if Liz was not near death? Yes. Did we know if Liz had attempted suicide? We didn’t know for sure.
But all roads led to the same understanding: Liz would not have wanted the feeding tube or other measures that would prolong a life dependent on full-time nursing care in a nursing home.
Sasha needed time. Sometimes we need a decision swiftly, and we press forward to resolve uncertainty and conflict. In this case, we had time to let Sasha get comfortable with the difficult decision ahead. We closed the conversation temporarily, and continued care for Liz unchanged. Two days later, Sasha called and said she had made up her mind: “Liz wouldn’t want that feeding tube. This isn’t how she would want to live.”
Liz’s caregivers are still providing her with antibiotics and other medical treatments, but in time I predict Sasha will choose more and more to provide Liz with measures that enhance comfort without extending life in an institution. In the end, the care we provide should achieve the goals the patient wants, even if the patient can no longer say what they are. This is true – but much harder – even when the patient had a hard time making good decisions when they were healthy, and strong, and the life of the party.
* Not her real name.