Introducing the NEW Partner Agreement on Tasks for Home Dialysis (PATH-D) Tools—Comments Welcome!

This blog post was made by Dori Schatell, MS, Executive Director, Medical Education Institute on May 7, 2015.
Introducing the NEW <em>Partner Agreement on Tasks for Home Dialysis</em> (PATH-D) Tools—Comments Welcome!

Home dialysis of any type is a challenge for consumers and partners in part because when you start to even think about something new, you don’t know what you don’t know. You don’t know what you are getting yourself into. You don’t know what the day-to day-tasks will look like or how you will fit them into a life that seemed pretty darned busy before tossing dialysis into the mix. I’ve heard from consumers who worry about burdening a partner—and from potential partners who worry about being burdened.

The reality is that there is a continuum of partner involvement with home treatments, from 0% (no partner) to 100% (a partner who does it all), with every step in between, and shifts of tasks back and forth when the health status of either partner changes. From what I’ve seen, dropout rates are higher in training programs that rely on turning partners into technicians while the consumer sits passively.

There are not a lot of studies in this area, but the few there are support the notion that an active consumer role is key to home dialysis success, at least with HD. In our interview study with people doing daily home HD and their care partners, couples in which the dialyzor took a larger role—particularly self-cannulation—were more likely to be thriving.1 A review of 24 studies2 found five key themes, in which the weighing of benefits vs. burdens is clear: 1). Vulnerability of dialyzing independently, 2). Fear of being alone, 3). Concern of family burden, 4). Opportunity to thrive, 5). Appreciating medical responsiveness. And, among 113 successful and unsuccessful home HD users,3 those who used adaptive coping styles were far more likely to sustain home treatment longer than those who did not.

What’s an “adaptive coping style”? Some examples (from here) include facing challenges, assessing them in a realistic way, observing unhealthy emotions and working to change them, and “trying to prevent adverse effects on the body.” Adaptive coping can be taught. While it may be tempting to “sell” home therapies based on how much better they are, it’s also important to offer realistic expectations about what the new tasks and responsibilities will entail.

For this reason, tools to help people picture what their lives might look like with home treatments, anticipate how they will face the new challenges, and communicate about both may help recruitment and retention for PD and home HD. So, here is a draft pair of brand new tools to do just that. The PATH-D has a page for PD and a page for home HD (HHD). They can be used to clarify expectations and roles before, during, and after home training.

I’ve already made some updates to the originals based on input from two Facebook groups, and now it’s YOUR turn. I’d like these to stay on one page, and the font can’t get any smaller. So, if we add something, we’ll have to take something else off to make room. Tell us what you think in the comments section! Please note that these will go into layout and look much nicer when they are done.

  1. Wise M, Schatell D, Klicko K, Burdan A, Showers M. Successful daily home hemodialysis patient-care partner dyads: benefits outweight burdens. Hemodial Int. 2010 Jul;14(3):278-88↩

  2. Walker RC, Hanson CS, Palmer SC, Howard K, Morton RL, Marshall MR, Tong A. Patient and caregiver perspectives on home hemodialysis: a systematic review. Am J Kidney Dis. 2015 Mar;65(3):451-63↩

  3. Nearhos J, Van Eps C, Connor J. Psychological factors associated with successful outcomes in home haemodialysis. Nephrology (Carlton). 2013 Jul;18(7):505-9↩

Comments

  • Sonia Gavin

    May 13, 2015 2:25 PM

    The computer "pin" used in the dialysis machine should automatically be sent to the clinic's computer rather than having to remove and replace each month for their report. Each clinic appointment means bringing this "pin" for the office to check it out. When is the info going to enter the clinic's computer automatically? Just a thought and idea which saves moving the pin in and out every month. Thank you for your thoughts on this. Sonia Gavin 05/13/15
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  • John agar

    May 08, 2015 10:49 PM

    Nice work, Dori.

    I will give these to our home training unit staff (both in PD and HHD) and see what their feelings are. As you know, we exclusively train the user, not a carer or partner, though looking at some of these tasks, I know some spouses, partners, wider family members, or friends do assist with some of them.

    There is also the opportunity here for an interesting cross-cultural, cross-national comparison study using these tools - one that might uncover some of the reasons for the higher technique survival rates shown in some countries vs. others.
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  • Amanda Wilson

    May 08, 2015 8:17 PM

    i like this tool. I think that these need to be shared with a patient's clinic for discussion. The only problem that I see, is for a patient themselves to be as involved as possible i their own care, will depend a lot on who is training them. In my opinion, there also needs to be education for nurses so that they promote an independent patient, rather than a dependant patient. How someone is trained, will have a strong influence on the patient/care partner dynamics going forward. I believe that it is easier to train independence from the start, rather than try to undo learned dependence later.
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    • Dori

      May 09, 2015 7:47 PM

      You're absolutely right, Amanda. Home training staff need to THINK about the model they are using, not just turn the home into a tiny dialysis clinic. Treatment can and should be different at home--which includes empowering the person who needs the dialysis to DO the dialysis, or as much of it as s/he is capable of doing. Very rarely I see a dynamic where someone really wants to be a careGIVER (we usually say "care partner," and they INSIST on doing everything. If the dialyzor is okay with that, it can work. But, if a dialyzes feels entitled to be waited on and a partner feels put upon, it's a recipe for failure.
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  • Renee Bova-Collis

    May 08, 2015 1:49 PM

    LIKE the creation of the checklists and the scale of how much each person anticipates doing. I believe these will be great exercises for dialysis partners to run through. Should get everyone on the same page with a little more clarity of expectations.
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    • Dori

      May 08, 2015 1:55 PM

      Thank you, Renee! Lots of research possibilities with these, too--they can be used multiple times (after a hospitalization or a move, for example) and will ideally help prevent dropout.
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  • Renee Bova-Collis

    May 08, 2015 12:45 PM

    When I click on either document it sends me to the top of the page. Is it just me?
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    • Devin

      May 08, 2015 1:37 PM

      Thanks for bringing this to our attention. Both documents should be available now.
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      • Dori

        May 08, 2015 1:42 PM

        They work for me. :-)
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  • Delores Stewart

    May 08, 2015 11:36 AM

    First, thank you for this wonderful information. I am a home PD Patient & also I have a great renal doctor & staff. Before I started dialysis they suggested I go to a few dialysis centers to get an idea of what I was going to be doing. This really was most helpful, it took some of the fear out of what was happening. Educating myself before dialysis made all the difference when I started, still, this is a new way of life, but staying positive & knowing all that I can, makes Home Dialysis the very best choice for me!!! My training team at my dialysis center were amazing as well!!!
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    • Dori

      May 08, 2015 1:45 PM

      Thank you for your comment, Delores. I'm so glad to hear that education helped you, and that you found your way to home with a great support team! If you use Facebook, we welcome you (and others who read this blog) to join our closed Home Dialysis Central discussion group (https://www.facebook.com/groups/HomeDialysisCentral/). As far as choosing a treatment option, please tell your care team about our free online decision aid, called "My Life, My Dialysis Choice" (http://www.mydialysischoice.org). We designed it to help people choose an option that will best fit THEIR values and priorities. It's based on the "Help, I Need Dialysis!" book that Dr. Agar and I wrote (http://www.lifeoptions.org/help_book).
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