Editor’s note: This article was originally published May 29 on Home Dialysis Central’s KidneyViews blog.

At the NKF Spring Clinicals meeting in March, a comment I was told that someone made at the microphone during a session still bothers me months later. The gist of it was: “Why does all of the responsibility for improving outcomes fall on clinicians—where is the patient in all of this?” [Good point, but it goes on…] “I lose money if my patients don’t reach the quality targets. Why can’t we fine the patients if they don’t do their part?—and audience members applauded!

Really?! We really have nephrologists who believe that punishing patients for not “complying” with their orders is going to improve outcomes? It seems that our community may need a refresher course in compassion.

Let’s start with the obvious. People who have kidney disease:

  • Do not want it
  • Did not ask for it
  • May not have known they had it
  • May not know what kidneys even do
  • May have done nothing to cause it*

Next, let’s look at the challenge of kidney disease a little bit differently. We’ve all seen an occasional story about a young person who raised his or her siblings after the family was orphaned, keeping them out of the foster care system. “How extraordinary,” we think. This type of story is so rare that it is newsworthy. Kidney disease is also a huge, unasked-for burden, and it is extraordinary when people adapt to it easily and do all the complex things they are instructed to do. Most people adapt (if ever) to kidney disease after a lot of kicking and screaming and anger and depression. You would, too.

* “But, some people’s poor health behaviors did contribute to their kidney disease!” I can imagine some of you saying. A lot of diseases, including type 2 diabetes and hypertension, the two leading causes of kidney failure in the US, do have strong lifestyle elements. It’s true that physical activity, eating lots of fresh fruits and vegetables, avoiding high-carb, deep-fried, fast foods, etc. can reduce the risk of these disorders and the damage they cause. But, it’s just as true that some people have pain or injuries and can’t be physically active, or live in places that are unsafe to exercise. And, fresh fruits and vegetables are costly, while the U.S. government subsidizes sugar and grains, so they are cheap.

We do a lot of victim-blaming in nephrology. Here is the type of title I would prefer to never see again: Patient compliance limits the efforts of quality improvement initiatives on arteriovenous fistula maturation.”1 In this study, a vascular surgery group set a schedule of office visits and fistulograms and used a patient liaison to call people, with the aim of reducing time to first cannulation. But, among 198 participants, the practice only influenced the first surgeon visit—not the follow up appointments, which “demonstrated a very high noncompliance rate.” (Compliance is a dirty word that should never be used in relation to people with a chronic disease, in my opinion.)

As someone who has had long-term contact with an estimated 15,000 people with CKD over the past 26 years, I would interpret their finding quite differently: Surgery is scary. Having your body permanently altered to treat a disease that could be fatal is a terrifying prospect. At the first surgeon visit, people don’t know what to expect. Once they learn what a fistula is—and perhaps even see photos—(let alone find out about the needles) they don’t want to go back.

To gain some insight, I asked a social media group of dialysis consumers why they didn’t get a fistula when their doctor asked them to. Some couldn’t, due to chemo-burned blood vessels, no vascular surgeon in the area, or a pending preemptive transplant. Others said things like:

  • That river in Egypt…

  • I didnt because in hopes of never or for a very, very long time of going on hemo permantly.
  • Denial……….putting it off till I was so sick, I couldnt deny it any longer.
  • There were many great reasons that I would rattle off to my Nephrologist every time he mentioned the “F” word. I knew that I did not have good veins, they are small and very branched (the surgeon comfirmed this during the mapping). I also was exemly afraid of needles and did not want them in my arm. I was active and did not want the fistula to slow or hinder any of my physical activies. But the deepest rooted reason was it ment that dialysis would be long term.
  • I googled fistula and seen pictures of scary snake looking arms.
  • I was stunned at the news I was going to have to have dialysis…… I asked no questions, was like a zombie.
  • Fear of commitment.
  • Pictures of people’s fistula online. Coming to terms with the fact that it’s for real now there’s no chance of coming off it like the drs said I might.
  • Petrified of needles and my stomach turns when i see blood. Have told my consultant under no circumstances am i having a fistula.
  • When I was first questioned about a fistula and about PD I will never forget the doctor said: Getting a fistula I will get money. EXACT WORDS. I was not happy. It was my arm he was talking about.

Instead of insisting that people must “comply,” offering understanding and compassion—and, most of all, HOPE that a good life is possible even with kidney failure—may go much, much further toward helping people take on the self-management role that is so vital to long-term success with chronic disease.