change of plan

I watched as two dialysis technicians positioned Ms. L for transfer from the dialysis chair to wheelchair. Before last summer, she could do this herself. Push herself to a stand using the arms of her wheelchair, take two steps, and sit down again in a different chair. Now that transfer required two technicians to hoist her in the blue net she sat on by the Hoyer lift, suspend her in the air, swing her over to her wheelchair, and ease her down again. patient-lift-diana-header

The lift was like a big metal stork carrying its baby bundled in swaddling. Except this baby was old beyond her years. Only withered legs that would never toddle off anywhere dangled out.

stork

 

 

Hush-a-by baby

On the treetop

When the wind blows

The cradle will rock

 It was all I could do to suppress the urge to sing the lullaby out loud, embarrassed that the song popped into my mind in those moments. But Ms. L and her daughter standing by seemed to also see the strange hilarity of the scene. Much of their smiling, though I knew, was because this would be their last day in the Hoyer lift in the dialysis unit. Tomorrow her daughter would go back to doing her peritoneal dialysis at home.

I was more embarrassed that I hadn’t made this transition happen sooner.

Last summer, when Ms. L became so ill, I was counseling her about stopping dialysis. What symptoms she might have. How much time she might have.

She had been in the hospital for weeks then, getting weaker and weaker, facing the reality that going home was not an option at that time. And since skilled nursing facilities could not do peritoneal dialysis, she would have to switch to hemodialysis.

Going to a skilled nursing facility again and doing hemodialysis. Two things Ms. L had said she never ever ever wanted to do. Funny what we become willing to do when the universe calls our bluff—I’d rather die. Now all that really really mattered was being able to enjoy food.

So out came the peritoneal catheter in her belly, and out she went to the nursing home with a hemodialysis catheter in her chest. And in and out from the nursing home to the hospital she went every few days for the next couple of months. She was short of breath. She had chest pain. She was dizzy. She was soiling herself. Her bottom was sore. Her time was spent starting at the walls or the television. She had no appetite. She wouldn’t eat. She refused to work with physical therapy. The possibility of ever getting strong enough to go home was becoming less and less a realistic hope.

I broached the subject again.

“Remember when you said you always wanted to be able to enjoy food? You aren’t eating anymore,” I reminded her.

“I am suffering,” she acknowledged. “All I do is stare at the walls. There is no enjoyment.”

“We can always change what we are doing,” I said.

But eating wasn’t that important any more, she decided. Soon even when she tried to eat, she couldn’t reliably swallow without choking. Her food needed to be puréed.

I stopped broaching the subject of stopping dialysis.

“I will support you in whatever she want to do,” I said.

And then, some days later, a funny thing happened. The last skilled nursing facility day covered by insurance came. The daughter was notified that Ms. L would be discharged right away. Ms. L couldn’t even turn herself in bed, but no matter. It was the last day insurance would pay for. A Hoyer lift would be delivered to the home. A visiting nurse would show the daughter how to use it.

So in and out, she went from home to hospital, hospital to home, every few days for the next more couple of months. She struggled to catch her breath. Even with the oxygen.  An extra dialysis treatment and maybe a breathing treatment in the hospital and she would be tuned up and ready to go. She seemed to have as much dialysis in the hospital as she did out.

Ms. L and her daughter were in deep denial about how truly unbearable the situation was, how much they were struggling, how much they were suffering, I believed. Surely, Ms. L would soon say, Enough.

Instead, a team of my colleagues during one of the umpteenth hospital admissions made a suggestion: Put in a new peritoneal dialysis catheter and switch her back to her daughter doing the dialysis at home.

It hadn’t occurred to me.

It seemed I struggled to remember my own words—we can always change what we are doing. I had forgotten to support Ms. L toward the only goal that really really really mattered—her desire to be home. As if I was tied to the course that made her suffer more.