Why to NOT Ask “Have You Thought About Home Dialysis?”

This blog post was made by Dori Schatell, MS, Executive Director, Medical Education Institute on May 10th, 2018.
Why to NOT Ask “Have You Thought About Home Dialysis?”

Something I hear over and over again among passionate home dialysis advocates is that they approach prospective PD or home HD candidates by asking, “Have you considered a home therapy?” Or, “You should do PD!” (I hear the same thing from dialyzors.) The problem with this approach—however well-meaning—is that it puts the modality first, as if the home treatment is a goal. But, it isn’t. Any modality is just a means to an end, not an end in and of itself.

As I’ve mentioned before, it took me a VERY long time of listening to dialyzors of every age, gender, and background to realize what now seems glaringly obvious: no-one wants any kind of dialysis. What they want is to turn back the clock, to take the pill that will cure their ailing kidneys, to have this not be happening. Wouldn’t you?

Denial, I strongly believe, is fueled by fear. Why don’t people get an access in plenty of time before they start treatment? Why do about half of American dialyzors each year crash into treatment emergently—even though many knew they had diabetes, hypertension, or both (what I call the “double whammy”? Fear. No one wants their lives to change in dramatic, scary ways. Instead, far too many wait, not believing the diagnosis and/or hoping it will go away, until the symptoms become too much to take and they end up in an emergency room needing a catheter. When we use a modality-first approach—“Which do you want, PD or HD?” for people who are scared, the answer is easy: Neither! Get me out of here! (I always picture the “See no evil, hear no evil, speak no evil monkeys.” Lalala, I can’t hear you!) As I pointed out in a previous post, fear makes learning impossible.

While denial is not a well-studied topic in nephrology, an interesting 2015 paper out of Poland (studies like these rarely seem to be done in the U.S.) compared coping strategies between 60 in-center HD and 55 PD patients. Not surprisingly, the in-center HD patients self-reported far higher levels of what the authors called “repressive coping strategies”—denial and avoidance—than the PD patients. 1 As in-center HD tends to be the default option used by people who don’t make an active modality choice, this makes sense.

What helps people get past denial and fear? Hope. And, what gives people hope? Keeping what matters most to them in their lives. THIS is why we need to avoid coming at people with modalities first. Instead, if we ask “What matters to you?”—and tailor our options education to meet their needs instead of offering standard, generic information, we put dialysis in the appropriate role: a means to a better chance of feeling better, maintaining a better quality of life, and even living longer.

The always-inspiring Lori Hartwell often says, “People don’t care how much you know until they know how much you care.” Asking people what matters to them and giving them information that fits their needs is a way to show that you care. And, you can easily do this using My Life, My Dialysis Choice. Try it!

  1. NowakZ, Wankowicz Z, Laudanski K.Denial defense mechanism in dialyzed patients.Med Sci Monitor.2015;21:1798-1805 ↩︎

Comments

  • Corlyn Altier

    May 13, 9:02 AM

    Given a choice of a) HHD b) PD c) In-Center anyone in their right mind would certainly pick option d) None of the above! This is the option we initially chose! Realizing option D was a fast track to the cemetery we utilized My Dialysis My Choice and chose HHD. We are 2 1/2 years into the HHD journey I feel that one of the hardest aspects is the isolation. In our county including us there is a total of '1' patient on HHD. I believe HHD begets HHD. If there were more patients on HHD, those patients would inspire other patients to try it and give the doctors the belief that their patients can do this! In our region the doctors don't see the benefits and wallow in ignorance of HHD. I would like to see NxStage take an active role with the involvement of patients and care partners to share the reality of HHD! My husband's labs are so good, our nurse says 'it's like he's not even on dialysis!'. More important, he feels great and has tons of energy! That is the payoff and why we do this!

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  • Peter Laird, MD

    May 11, 2:54 PM

    Dori, the entire cycle of depression, inaction and “noncompliance” was a huge primary care issue with obesity, HTN, diabetes and the metabolic syndrome. These conditions are epidemic in the US and around the world. Collectivly, they cause the majority of ESRD cases.

    Far too many patients live in denial and depression over their declining health despite the fact that we have excellent treatments for all of these conditions.

    Sadly, these psycological issues follow them into the dialysis unit rendering them passively engaging in the choice of in-center hemodialysis.

    Couple this with the fear of self cannulation and the increased work of self care, the cycle of helplessness and depression renders them into a rapidly dismal demise.

    The cycle of depression and inaction is well studied in diabetes patients who comprise 45% of the ESRD population in the US.

    https://www.diabetes.co.uk/diabetes-and-depression.html

    Knowing all of this, I had not considered that the approach of informing patients of these home options may actually add further burdens of guilt and hopelessness to their depression.

    Sadly, I have witnessed far too many exceedingly young people march down this path despite an entire team of medical professionals desperately trying to intervene.

    I have yet to see anyone with the degree of success needed to abort this epidemic that only grows worse each year. Sadly, far too many are on dialyses that could have avoided or significantly delayed that outcome.

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    • Dori Schatell

      May 11, 4:43 PM

      Peter, I'm not sure I'd quite say that using the wrong approach would add further burdens of guilt and hopelessness--it's just that if people don't have hope FIRST, they can't learn, so the message is ineffective, and a patient may end up in-center who would feel better and do better at home, while the staff thinks, "Well, I did my best." I'd like to see the renal community up its collective game! Let's start with VALUES first, not modalities. And, people with diabetes need hope as well. It IS possible to slow or even reverse some diabetes complications, if it isn't too late. And, if it is, there is always an opportunity to find out what gives someone joy and start from there...

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  • Dori Schatell

    May 11, 1:53 PM

    Rebecca, of COURSE you and your husband could do HHD! Motivation is the most important factor, and if no one was successful at that clinic, they should have been looking at their training approach and trainer--not assuming that it "can't be done."

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  • Rebecca F

    May 11, 11:52 AM

    I couldn’t agree more. As a nurse I remember doing a tour of a dialysis clinic in nursing school. I couldn’t get out of Guilford quick enough. So many of the patients looks so depressed and helpless and it made me NERVOUS ! When my husband got sick I remember looking into the options and like you said there wasn’t much choice at all. They were all so scary. When we thought about what he would do it was natural to come to the PD conclusion. After he was feeling better and on PD at home for a while I researched hhd. The Clinic frowned on hhd and said they have attempted to train 5 people in the last year and no one was successful. They strongly discouraged it. The point I’m trying to make is that we could absolutely do hhd. I did bedside dialysis in the hospital and I know we could manage at home. The attitude of the Clinic created an environment where people were failing at hhd before they even started. The support staff needs to be UNBIASED! I think this is important because quality of life is essential.

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