After recording my latest YouTube video for the fifty-leventh time before getting a usable version, I realized I didn’t answer the question posed by the inspiration email. In the video, I talk about how to bring up the notion of stopping dialysis to the nephrologist, but the writer was asking how to bring it up to their sister on dialysis. Anyone familiar with the vernacular “fifty-leventh” knows that means I did not have it in me to do even one more take. But I can address their question here.
First, I’ll say, just like beauty, the perception that “life is horrible” is in the eye of the beholder. Perhaps we have all said at one time or another something like, “I couldn’t live if I lost my [fill in the body part], or my ability to [fill in the sense]. Of course, such statements are able-ist as fuck, because they don’t recognize that many people with disabilities live full lives in the states the able-bodied assume we can’t even exist. Humans have a tremendous capacity to adapt.
The same goes for people on dialysis. Many have said, “I’d rather die than ever be on dialysis,” I’ve responded with a whole-ass video that dialysis doesn’t mean life is over…just different. I would put good money on a bet that the vast majority of the roughly 500,000 people in the US who are on dialysis would agree with that response. Therefore, one cannot assume that what we perceive as a horrible existence is just as horrific for the person living the reality.
This was what one of my patients learned. She was using a wheelchair when we met, too frail to walk after a long nursing home stay. She never ever, never ever-ever wanted to see the inside of a nursing home again. She’d rather die, she said. But when, about a year after starting dialysis, she had an extended hospital stay that left her even weaker, she said she would rather die than ever be on a pureed diet. But when she could no longer swallow solid food, she decided she could tolerate a pureed diet. She even convinced herself that pureed Thanksgiving turkey wasn’t so bad. And when a nursing home stay was in her future again, she decided she could do that too.
Now, along with her moving line of what she was willing to adapt to, no doubt fear existed too. Sadly, fear tends to drive most of us in most things. Among dialysis patients and their families, there is often fear that stopping dialysis will mean a hard, balloon-swollen, excruciatingly painful death the day after. Fear that their family will be angry at them for “giving up.” Fear that their god will give away their spot in whatever afterlife they believe awaits them because they equate stopping dialysis with suicide. Now, I can’t speak to family dynamics or religious assertions, but dying from kidney failure is not what most fear.
I remember it was the fear of not knowing what was on the other side of death that kept one of my patients on dialysis though he was truly miserable. When I met Mr. H on his first day of dialysis, he already had terrible back pain and a failing liver. As his health deteriorated, he couldn’t tolerate any position in the dialysis recliner for more than an hour and spent more time in the hospital than not. It took the hospital palliative care specialists to ease his existential angst before he could accept that dialysis was prolonging his suffering.
It is that fear that makes a conversation about stopping dialysis one worth having. For doctors and family members, starting the conversation can be as simple as, “We don’t have to keep doing things the same,” to let the patient know that the topic is not taboo. No fear indicated.