This past Friday in my renal clinic I saw a 64-year-old patient who I have been managing for the past 5 years. Her estimated GFR has been between 5 and 6 ml/min/1.73m2 since 2006. She had done pretty well, but was now complaining of more tiredness and a poor appetite, and some inversion in her sleep cycle. My diagnosis: mild uremia. I started the conversation with her about initiating dialysis in the next few weeks. She already had a fistula in place so the initiation would be quite straightforward, I told her.
My patient became frightened and emotional about the prospect of starting dialysis. She told me, as she started to cry, that she had read that being on dialysis was like torture. Immediately my mind went to an article in Parade magazine that was published on Christmas Eve. In this article by Kate Braestrup titled “The Miracle of Life: How One Woman Turned Tragedy into the Ultimate Gift”, she portrays dialysis as "a tragedy" and receiving a transplant a “the miracle of life”.
Ms. Braestrup writes: “Kidney failure, which can be caused by conditions ranging from infection to diabetes to injury, affects 485,000 people in this country, killing more than 70,000 every year. The vast majority of those who survive do so by chaining themselves to a grueling, painful treatment known as hemodialysis (or simply dialysis), which requires being hooked up to a machine that filters waste from the blood for hours at a time.”
With press like this no wonder my patient was frightened and upset.
Still, it is hard to imagine how we could fix this perception. Maybe by placing the pictures of healthy looking people on the web sites of dialysis providers? Or perhaps by pointing out how much progress we’ve made in keeping patient’s alive – John Sadler’s "Let Perfection Not be the Enemy of Good" – “almost 80% of patients survive each year. That’s not a bad record.”
But maybe it’s by focusing on improving patient quality of life (QoL) and rehabilitation potential. Gary Peterson writing in RenalWeb takes me to task for suggesting that QoL and rehab are “intermediate outcomes”. Technically they are. However, I agree with Mr. Peterson that increasing longevity is only a part of the solution. Many patients feel that dialysis is a lousy option and that is the reason that Ms. Braestrup characterizes dialysis as a "tragedy" and "[patients] chaining themselves to a grueling, painful treatment known as hemodialysis".
We need a therapy that makes patients feel good, lead meaningful lives, and also keep them alive. Perhaps the answer is more frequent and longer dialysis. Maybe it is something else. We need to innovate and overcome the stagnating effect that dialysis industry consolidation is having on technological innovation.
So I am not as optimistic as Allen Nissenson (see "Best is Yet to Come"). I firmly believe we have a lot more to do to make our patient's feel better. And, it's actually not about perception but the reality. As JFK is quoted as saying "To state the facts frankly is not to despair the future nor indict the past".