CKD Education Ignores the Storm of Emotion

This blog post was made by Dori Schatell, MS, Executive Director, Medical Education Institute on October 1st, 2015.
CKD Education Ignores the Storm of Emotion

This week’s east coast hurricane reminds me that one thing that often leaves me shaking my head in disbelief about U.S. dialysis is the near-total view of it as a strictly clinical process. “Dialysis removes water and wastes from the blood,” people are told. Well, yes. But, it tends to do so while disrupting every single aspect of life, from sleep to energy level to mealtime to body image, work, travel, sexuality, and fertility. Ironically, the less dialysis someone gets, the more his or her life is likely to be upended by debilitating symptoms, schedule-impeding treatments, multiple medications, and challenging dietary and fluid limits. But, we don’t tell people this. And, we ignore their emotions.

In talks about CKD consumer perspectives, I use this slide of a wave to represent the tsunami of emotions people commonly feel when they are told their kidneys are failing, whether or not they knew it was coming:

  • Fear and anxiety that they will die or lose everything that matters to them or become a burden on their families, or that dialysis will be painful.
  • Anger—at themselves, at their doctors, at God…
  • Disbelief that this is happening, especially if they feel relatively well.
  • Depression that life as they know it will be over; their best days are behind them, and there will be nothing to look forward to.

All of these emotions can swirl around at the same time, knocking people off the foundation of their lives and leaving them standing in the muck, shell-shocked and wondering what happened.

On the other hand, countless times on airplanes, I’ve had that conversation that starts out, “What do you do?” When I explain that MEI develops evidence-based education for people with kidney disease and describe the various dialysis options in terms of lifestyle, every single time the response has been, “Well, that (nocturnal home HD) seems like a no-brainer. Why don’t more people use it?” One factor that often isn’t considered is that people with CKD who need to choose a treatment for kidney failure don’t want any of the options, even transplant. They want this to not be happening.

Decisions are emotional, not rational. Shuck et al notes that: “Humans act emotionally before the conscious awareness of emotion can occur; we react before we know we are reacting. Our minds respond cognitively as the biological response for emotions reacts to the physical environment. Biologically, emotion affects the mind.1

Those airplane seatmates had no emotion surrounding the choice of a type of dialysis. Their kidneys hadn’t failed. They weren’t afraid of losing their homes, jobs, loved ones, or lives. They didn’t have to learn how to do a home treatment that involves having a catheter implanted or self-cannulating with large-gauge needles, or operating a strange apparatus. They didn’t have to worry about troubleshooting or where to fit a machine and supplies into their homes. So, of course they could look solely at the facts and declare that a type of dialysis that best preserves lifestyle and promotes long-term survivor is a “no-brainer.” Perhaps this is why 94% of nephrologists say that they would choose a home option if their own kidneys failed and they had to wait 5 years for a transplant—home dialysis truly is the rational choice for many.2 But, in the real world, emotions come first, and fear displaces rationality.

People who are afraid can’t learn. Perry3 points out in an article about fear and learning that nearly 1/3 of adult learners have had a history of trauma: abuse, neglect, developmental chaos, or violence that interferes with their ability to learn even in the best of circumstances. And, with or without prior trauma, a “fight or flight” or “alarm reaction” triggers a full-body response: “As an individual feels threatened, he or she moves along the arousal continuum from left to right. The further along he or she is on this continuum, the less capable he or she will be of learning or retrieving cognitive content; in essence, fear destroys the capacity to learn.” Perry goes on to explain that, “The person’s internal state shifts with the level of perceived threat; as it increases, vigilance may proceed along the arousal continuum to terror. This is characterized by a graded increase in sympathetic nervous system activity, which in turn causes increased heart rate, blood pressure, and respiration, a release of glucose stored in muscle, and increased muscle tone. Changes in the central nervous system cause hypervigilance; the person tunes out all noncritical information. These actions prepare the individual to fight with or run away from the potential threat. The total-body mobilization of the fight-or-flight response is highly adaptive and involves many coordinated and integrated neurophysiological responses across multiple brain areas.”

What these statements imply is that we must address the fear first, before we even try to educate people about ESRD treatment options. How can we do this? By offering hope.

If you saw the movie Fight Club, you may recall that the first rule of Fight Club is, “You don’t talk about Fight Club.” In my opinion, the first rule of ESRD options education needs to be, “You don’t talk about the options.” You start by talking about patients’ values and lifestyle preferences. This approach is less threatening and more hopeful. One reason so many people “choose” standard in-center HD may be that we start out by teaching them how various treatment options are done—but not why one might make more sense than another for a given lifestyle. Once you know what matters to someone, then you can discuss how different options may affect their lives. When people know that they may be able to keep what is most important to them—travel, a job, pets, etc.—their fear level will be reduced and they can begin to learn the “how.” This is how we designed the My Life, My Dialysis Choice decision aid, and why we built it.

We hear lots of talk about “patient-centered care” in the renal community these days. The most patient-centered approach is to start with where people are. Acknowledge and address their emotions. Ask what matters to them. Help them make a treatment choice that fits what they want their lives to look like. A sea change in how we approach CKD and modality education can help avert the crisis of a personal tsunami.


  1. Shuck B, Albornoz C, Winberg M. Emotions and their effect on adult learning: a constructivist perspective. In: Nielsen SM, Plakhotnik MS, eds. Proceedings of the Sixth Annual College of Education Research Conference: Urban and International Education Section. Miami, FL: Florida International University; 2007:108-113. http://www.scribd.com/doc/35059133/Emotions-and-their-effect-on-Adult-Learning-a-Constructivist-perspective. Accessed September 1, 2015.
  2. Merighi JR, Schatell DR, Bragg-Gresham JL, Witten B, Mehrotra R. Insights into nephrologist training, clinical practice, and dialysis choice. Hemodial Int. 2012 Apr;16(2):242-51. Doi:10.1111/j.1542-4758.2011.00649.x.
  3. Perry BD. Fear and learning: trauma-related factors in the adult learning process. New Directions Adult Cont Educ. 2006;110:21-27, doi:10.1002/ace215

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Comments

  • Charles Barbarow

    Oct 10, 1:54 PM

    The process could be an incredible healing experience.
    Over 20 years ago I lost my home, business everything ..it saved my life because I finally got into heavy duty therapy.. Where the main theme was to actually feel all your feelings at a very deep level...this process healed very deep emotional baggage...and I know it worked because I have been on dialysis 8 years and I am not feeling any emotions at all and I am very "focused"...If this is your first major crisis and your feelings are overwhelming...look into deep feeling therapy...
    cb

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    • Dori

      Oct 12, 6:21 PM

      Therapy truly can be a life-saver, Charles. I'm so glad that it helped you!

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  • Henning Sondergaard

    Oct 8, 8:57 AM

    Great post, Dori.

    Everything you say is spot on. But I can't help thinking, "You haven't even started touching upon the fact that CKD precipitates cognitive impairment."

    There is no doubt that the CKD itself reduces emotional and cognitive performance making matters worse. I know that only complicates things even more, but my point is we have all the more need for an approach that starts where people are, mentally, emotionally and socially. The ridiculous focus on clinical factors is not only detrimental to good clinical practice, it is dangerous to all of us.

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    • Dori

      Oct 12, 6:21 PM

      That can be your next blog topic! :-)

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  • Nick

    Oct 2, 11:32 AM

    Well said. Those who have gone before can show that time and patience can improve the treatment. The benefits of home PD or HD may not be immediately accepted and may take time for realization. My path to PD took 20 months, 4 catheters, pain and a lot of support from family and in-center staff during HD . When I compare how I feel after 6 months on PD versus 18 months in-center HD, the pain was worth the end result. I am old school twin-bag 4 times a day. Hopefully my next success will be nocturnal PD on a cycler.
    Stay confident people. Remember the alternative to HD or PD is not an option to consider unless it is a transplant.
    Wishing all success in their choices. It does get better.

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  • corlyn altier

    Oct 2, 9:25 AM

    I can certainly relate to this article. The fear can be paralyzing at time. I feel that each week as we draw closer to the day that treatment starts I'm learning another factor of our new reality. Yesterday was about modifications to our plumbing and electric at home. The day before was learning more about paying for it (still trying to figure that out). Of course the biggest fear is the first time we have to insert the needle into my husband's arm. This is a lonely journey full of emotions and fears that most people in your life have no idea about and will try to find the positive side in their efforts to be supportive. If he remains stable we will probably start training for home treatments in November.

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    • Nick

      Oct 2, 1:45 PM

      Fear of the unknown will dissipate with your training. Be sure to let your trainers know so they can help you to be positive. Many have gone before and experience the same fears and concerns. Perhaps a support group in your area will help. There will be some bumps but time and confidence in trainers and yourselves will win out. There are no problems only solutions waiting to be found. Success be yours.

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    • Dori

      Oct 2, 11:49 AM

      You two have come a very long way in a relatively short time. The more you know, the less scary this all can be, but it's totally normal to be paralyzed with fear, and your ability to keep moving despite it is really impressive. Hang in there.

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  • Isabelle March

    Oct 1, 9:01 PM

    Thank you so much for your wisdom and understanding!
    In our family's experience, the emotions that accompany the transition to PD are as important a component of the experience as the training (and can certainly affect learning). The first year+ of PD was fraught with difficulties, which were depressing; although our nursing staff was kind, patient, and helpful, the future looked grim. We had no way of knowing that we were actually lucky: difficulties would eventually resolve and the process would shake down and become a significantly less demanding routine, physically and emotionally. May everyone be so fortunate!

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    • Dori

      Oct 2, 8:30 AM

      You make an excellent point, Isabelle. It's not just at the point of choosing a treatment option that there are strong emotions that must be addressed. Any time something goes wrong, they all come back. As you say, when you are in the middle of a roadblock, you don't know if it will clear, or if you will have to take a detour, and not knowing creates huge stress. We tend to deal with the clinical problem without addressing how anxiety-producing the unknown is. I'm so glad to hear that your path finally smoothed out!

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