You Can’t Legislate Death

When Lucy was five, she began to suffer the effects of a rare genetic disease that affected her cognition and physiological development. The onset of symptoms was rapid; she soon experienced significant cognitive deterioration leading to ataxia and seizures. Lucy became nonverbal and was confined to a wheelchair and fed through a gastrostomy tube. She was transitioned to a small group home where her biological mother affectionately referred to Lucy’s new care provider as her “foster mother.”

I met Lucy four decades later. On a Sunday afternoon in late fall, Lucy was brought to our emergency department after she aspirated her tube feedings at home and went into respiratory failure. Her biological mother, who had been Lucy’s legal guardian since Lucy was 18, asked that she not be intubated. If Lucy was nearing the end of her life, her mother wanted her to have as natural and peaceful a death as possible.

Her mother’s request was understandable given that it appeared Lucy was nearing the end of her life. The life expectancy of people with Lucy’s disease is middle–age. While Lucy may have appeared young, she was actually quite elderly in terms of her medical condition. This was also the fourth hospitalization Lucy had been through in the past two years; prior to these occurrences, Lucy had not been hospitalized since she was a child. Whereas the three prior hospitalizations were for gastronomy issues, this hospitalization was the first for a significant respiratory problem. Unfortunately, while this hospitalization was a life–altering event for Lucy and her care providers, it was not life–altering in the way her mother thought it would be.

I was called about Lucy at home by one of our emergency department physicians. She somewhat sarcastically told me, “I have this patient who’s in respiratory failure. Her mother—and guardian—does not want her intubated. I called palliative care to have them take over, but I was told by the attending palliative care physician that she can’t accept this patient and that she’d have to be intubated because of some Wisconsin law. I was told to call you. Are you really telling me I have to intubate this woman against her mother’s wishes?”

On one hand I was glad that the physician called me. I spend a lot of time rounding with multiple specialty providers in the hospital—including those from palliative care—and I frequently have conversations with them about end–of–life issues. I was pleased that some of those conversations appeared to be resonating within our palliative care team. The “Wisconsin law” the emergency provider cited, also known as the Edna ruling, can be challenging in its practical application, and so I was also glad for the opportunity to potentially help clarify any misunderstandings about why the palliative care physician told this emergency department physician that Lucy would need to be intubated.

“Is she decisional?” I replied.

“No,” said the physician. “She’s been severely cognitively delayed since childhood.”

“So she’s never had the opportunity to express her own treatment preferences?”

“Correct.”

“Is she dying?”

“No, but she’ll need to be intubated and transferred to the Intensive Care Unit.”

“Ok,” I replied with a sigh. “I think the palliative physician is right. I know her mother is refusing intubation, but under Wisconsin law, legal guardians cannot refuse life–sustaining treatment for wards who have never expressed their treatment preferences and who are not in a persistent vegetative state.”

“Are you kidding me? That’s infuriating. This woman is going to be pissed.”

“I’m sure,” I replied.

The next morning—after confirming that Lucy was in our ICU—I decided to round with the critical care team. I asked the attending physician about how things went with Lucy overnight. “Oh yeah, her mother is pissed,” he told me. “But,” he continued, “we also talked with Lucy’s foster mother, and she wants Lucy to get full treatment so she can get well enough to be discharged back to the group home.”

Lucy’s mother was not in the room when we...