Candy Man couldn’t remember the two strands of plastic tubing dangling from just below his right collarbone—the tunneled catheter we used to connect him to the dialysis machine. Candy Man was the nickname the outpatient dialysis unit staff affectionately bestowed upon my patient with severe dementia because of his insistence upon passing out nickel candy to everyone as he tottered his way to his dialysis chair. He bought more in the hospital gift shop after dialysis on his way to the taxi circle, until someone who didn’t know his steps were always unsteady and his mind always confused, noticed him and sent him to the Emergency Room. This happened a few times until we arranged for a taxi to pick him up right outside the dialysis unit, where no strangers would see. When he got in the taxi but couldn’t remember his address, we made him a necklace decorated by a placard that displayed it. As his steps became more wobbly and his clothes more baggy, we got him a walker with a seat so he could rest his frail body instead of falling and adding a broken hip to the mix. It took a couple of years, but finally we had Candy Man set up for success.
And then he started noticing the plastic tubing. He remembered it long enough to pull the catheter out. A new one was put into the large blood vessel that lay beneath his left collarbone. A few days later, he pulled that one out too. Again a new catheter was put in. This time back to the right.
He didn’t remember pulling out either catheter, but I remember what happened to another patient years ago who pulled out each catheter soon after it was put in. About eight times. Because that man was developmentally delayed, his actions were not interpreted as him not wanting dialysis. He didn’t have the capacity to make that decision.
The body recognized each plastic catheter as the foreign material it was and launched an inflammatory attack to eject it. It was a natural response, but one that also damaged the surrounding blood vessel. Damage that, along with the trauma of yanking out the catheter, sent the body into repair mode—repeatedly laying down an internal scab that could not be picked off, gradually narrowing the blood vessel, until there was no longer an opening. Without an opening, blood could not drain from his head. His head swelled like a doughy balloon until he could no longer breathe. Superior vena cava syndrome. And like everyone else involved in his care, I did nothing to disrupt the pattern—restrain, sedate, reinsert catheter, repeat— that led to this patient's demise.
I didn’t want this for Candy Man, I told his daughter. We should believe his actions meant he didn’t want the catheter and not put another one in, I said. To my surprise, she agreed.
But a few months later when Candy Man showed up for dialysis with his catheter cut off about an inch before it dove under the skin, a member on our team asked me, “So are you going to send him to hospice?”
I flushed. What would I do? Would I follow through with all my talk about not doing dialysis simply because we can, until something else like a massive heart attack or stroke saved us from ourselves? Or would I just put in another catheter and avoid the tough conversations, the imminent death.
For a moment, I thought of sending him for another catheter. Not just because it would be the easiest path, but also because I didn’t want to say goodbye to Candy Man.
I called the daughter to say what I thought we should do. No new catheter. We should get hospice involved, I said. Again she surprised me.
Candy Man died 11 days later at home of kidney failure. His passing saddened me, but I took heart in the fact that he didn’t suffocate to death.