how it’s always been done

Some time ago, I wrote about how I, being no Denzel Washington groupie, am unaffected by my Denzel doppelgänger. I am, on the other hand, an Atul Gawande groupie and metaphorically wriggle out of my panties every time I read his work. I find his writing clear, thoughtful, moving. Something I aspire to. My reading of Being Mortal was no different. In it he writes about our tendency to prolong life (not to be confused with living) at all costs. He tells the story of his own father as an example, from his life before cancer to encounters with cancer doctors to his passing with hospice. In the end, it was hospice that prolonged his living (not to be confused with curing his cancer). But a recent encounter left me feeling that the one-size-fits-all approach of hospice may not be the best approach for patients with end-stage kidney disease and their families.

The very old woman and her almost old daughter returned to clinic. Last summer she was admitted to the hospital when her kidney function was about 4%. She was clear—and had been for years—that she didn’t want dialysis. But when the very old woman started having symptoms of her end-stage kidney disease, the daughter wasn’t so sure she didn’t want dialysis for her mother. The one thing she was sure about was that she didn’t want hospice.

But now that, 8 months later, the very old woman’s kidney function was 2% and she was sleeping all day but up agitated all night, I thought the daughter might be more receptive to hospice. Receptive to having someone who knew how to support dying patients and families of dying patients to call on 24/7.

She was not. I asked her why.

Just like Gawande describes in Being Mortal, hospice asked about funeral arrangements as soon as they walked into their home.

“Why are they asking us about dying? She wants to live!”

Hospice would not check blood tests.

“They just wanted to give her a strong medicine. Like they were trying to kill her.”

Hospice would not continue medications prescribed by the primary care doctor years ago, medicines daughter believed were helping—further proof, believed the daughter, that they were trying to hasten her mother's death.

“She wants to live!”

The primary care doctor had said the mother would pass within a couple of weeks. That was 2 months ago.

“She is still here!”

I get that hospice came of age in this country in the 70’s in an era of cancer when all chemotherapy drugs very toxic and there were a limited number of them. Like a hippie teenager, hospice was free of aggressive trappings of the mainstream world, prepared to let go—in 6 months or less. But end-stage kidney disease, though terminal, doesn't behave like terminal cancer. People can linger for months, years with very little kidney function. People like the very old woman.

As I look at the very old woman slumped over like a pile of wrinkled flesh in her wheelchair fast asleep, then back to the daughter’s eyes squinting from not getting enough sleep, I wish there was more peace to be had in the lingering. Suddenly hospice feels like a grumpy old man set in his ways. He insists on doing things the way they’ve always been done, because that’s how they’ve always been done. Take it or leave it. I wish old man hospice would at least learn how to turn on the computer.