Are Partners Really Necessary for ALL U.S. Home Hemodialysis Consumers?

This blog post was made by Dori Schatell, MS, Executive Director, Medical Education Institute on May 9th, 2014.
Are Partners Really Necessary for ALL U.S. Home Hemodialysis Consumers?

Anecdotally, we at MEI hear that as many as 40% of people who train for short daily hemodialysis (HD) at some clinics drop off of the therapy within a year. Often, the reason seems to be care partners who may be overly burdened by a training philosophy (conscious or unconscious) that gives them the bulk of the dialysis tasks, including cannulation—which can be highly stressful to the point of dread. Our research found that home HD success seems to be linked to having the person who gets the treatment do as many of the dialysis-related tasks as s/he is capable of.1 And, analysis of the Frequent Hemodialysis Network study results found that, for those on dialysis, feeling as if they were a burden was linked with worse depression and poorer quality of life.2

Here's something most people who work in American dialysis don't know: In Denmark, you can't do home HD unless you can do your treatments independently.3 From what I hear, Australia and New Zealand clinics may refuse to train a "carer" for home HD as well. Imagine that. It's the polar opposite of what we have here.

When we first started Home Dialysis Central in 2004, our policy was that if blood is outside of the body, someone else besides the dialyzor had to be there. What if there was a problem? It wouldn't be safe! Right? But, our minds were gradually changed by the folks we met—like Bill Peckham—whose care team at Northwest Kidney Centers very sanely, I think, reasoned that it is safer for a competent adult to do intensive HD (longer, and/or more frequent treatments) alone than it is to insist that s/he receive far less kidney replacement therapy in a clinic.

The truth is, we adults choose to take risks all the time. For my younger daughter's 18th birthday, we gave her a solo skydiving jump. She had to take classes, and we signed a legal waiver—and she jumped out of an airplane and guided herself triumphantly to the ground. I know adults who go ice climbing, ride motorcycles, drive racecars, walk tightropes, smoke cigarettes. All of these things involve taking your life in your hands. Even just getting behind the wheel of a car is taking a risk. Why is solo dialysis so different?

Okay, it's medical. Blood is involved. There are needles or catheters (yes, some people do home HD with a catheter). But an estimated 300,000 to 500,000 Americans require insulin for diabetes.4 Severe hypoglycemic episodes can cause loss of consciousness and seizures that can lead to falls, car accidents, or cumulative brain damage—but we don't require people with diabetes to have a partner to give their insulin.

Part of the issue is an in-center mindset, I think. Many training programs follow the model for standard HD treatments, where a nurse or technician typically does the cannulation—so, rather than train dialyzors to take on this vital self-management task, they turf it to the care partner. In-center,symptomatic intradialytic hypotension may occur in more than one in four treatments doubling the risk of vascular access thrombosis,5 contributing to lengthy post-treatment recovery times, and increasing mortality.6 If hypotension is likely, someone has to be standing by to help. When ultrafiltration is slower and gentler, painful and potentially deadly "crashes" are far less likely. So, a care partner can be throwing in a load of laundry or starting a meal elsewhere in the home, or running an errand—or not present at all.

But, let's get real. The "you must have a care partner" policy is all about lawyers and preventing lawsuits. If you happen to be a large dialysis provider with deep pockets, it makes sense to limit your risk exposure. And, on the face of it, it seems to be risky to "allow" people to dialyze at home without a partner. On the other hand, an estimated 400 people suffer catastrophic hemorrhage from venous needle dislodgement in dialysis centers each year.7 Tens of thousands more standard in-center HD patients have sepsis, develop crippling neuropathy or joint damage, have their vascular accesses damaged by poor cannulation, or have sudden cardiac death. (Shhh. Don't tell the lawyers, or they won't let anyone dialyze!)

Doesn't it make more sense to assess each person who wants to do home HD on a case-by-case basis? There is a continuum of capability for home HD, from fully-autonomous to total care, and every gradation in between. Letting capable individuals learn to dialyze themselves—and requiring partners for those who need help—makes sense, should reduce drop-out, and can help extend the tremendous benefits of home HD to a wider audience. (And if it will make the lawyers happy, provide remote monitoring for solo home dialyzors. It probably won't boost outcomes, but everyone will feel as if there is more support.8)

References

  1. Wise M, Schatell D, Klicko K, Burdan A, Showers M. Successful daily home hemodialysis patient-care partner dyads: Benefits outweigh burdens. Hemodialysis Int. 2010;14:278-88
  2. Suri RS, Larive B, Garg AX, Pierratos A, Chertow GM, Gorodetskeya I, Kliger AS; FHN Study Group. Burden on caregivers as perceived by hemodialysis patients in the Frequent Hemodialysis Network (FHN) trials. Nephrol Dial Transplant. 2011 Jul;26(7):2316-22
  3. http://homedialyzorsunited.org/hennings-corner-of-the-world-dialyzing-at-home-without-a-partner/
  4. Diabetes in America, Second Edition. March 11, 2013. Chapter 3. Prevalence and Incidence of Insulin-dependent Diabetes. LaPorte RE, Matsushita M, Chang Y-F. http://butteredsidedown.co.uk/docs/insulin_chapter3.pdf Accessed 5/8/2014.
  5. Chang TI, Paik J, Greene T, Desai M, Bech F, Cheung AK, Chertow GM. Intradialytic hypotension and vascular access thrombosis. J Am Soc Nephrol. 2011 Aug;22(8):1526-33
  6. [No authors listed] Dialysis: risk of mortality increases with recovery time after dialysis. Nat Rev Nephrol. 2014 May;10(5):240
  7. Axley B, Speranza-Reid J, Williams H. Venous needle dislodgement in patients on hemodialysis. Nephrol Nurs J. November-December 2012;39(6):435-45
  8. Cafazzo JA, Leonard K, Easty AC, Rossos PG, Chan CT. Patient perceptions of remote monitoring for nocturnal home hemodialysis. Hemodial Int. 2010 Oct;14(4):471-7

Comments

  • Dori Schatell

    May 12, 8:27 AM

    John, I'm going to ask our office manager to get me those references so I have them (unless you want to send them to me).

    Dr. O, it is inspiring to hear about your terrific partnership with your wife! You two sound like a great team. :-)

    Les, I'm glad you are getting ready to head back home! Can you remind me which clinic you dialyze with? I have been told that the large dialysis organizations will support what an MD prescribes, but am not sure I've heard of anyone doing self home HD without a partner at DaVita or Fresenius. Northwest Kidney Centers supports it, as do some of the independents.

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    • Les Wetzel III

      May 12, 11:23 AM

      Dori, I dialyze with DSI Renal Tampa Central, 4705 North Armenia Avenue, Tampa, Florida 33603, 813-353-8100. The HHD training nurse is Martha Schoening. Both DSI Renal units in Tampa Bay area will allow no care partner if the patient is able to handle things on their own.

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  • Les Wetzel III

    May 11, 1:00 AM

    When I was trained for HHD I was initially told that I would need a care partner, but after making a case that I could do everything myself my training nurse conceded and allowed me to train and dialyze alone. I continued to dialyze for 2 years until I had another medical problem which caused me to go back incenter. I am currently preparing to go back to HHD as soon as I am cleared by physical therapy that I can still do everything needed to do the treatments again. I have been an advocate for the past 4 years that care partners should not be required when the patient is able to do things for themselves. If a patient can operate a car I think that they should be able to do dialysis at home with the right support from the clinic. Thanks for bringing this up Dori ....

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  • Dr. O.

    May 10, 10:20 AM

    As doctor and care partner for my wife I enjoy being the one to "save her life " 5 days per week. Yes we do 5 days of 3.5 hours dialysis in addition to running my medical practice part time together.
    So we are the unusual ones. We are truly a team. It helps to have a good marriage.
    For those who dont or cant then do it alone. I agree that it is better than in center to bring it home.

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  • John Agar

    May 9, 5:33 PM

    We do NOT train a partner, we train the patient, we have never trained 'the partner'. We do NOT require, nor encourage 'a care giver'. We never have. We never will. We have sustained between 25 and 30 percent of our HD patients at home, the ratio never falling below that percentage since 2005. Currently, we have more than 40 home HD patients. All self-dialyse. All. Several .. commonly about 1/4 to 1/3rd .. dialyse alone. It has always been thus.

    I have addressed this 'myth of care giving' in several papers, perhaps that you have not read, two of which I was asked to write for special supplements in HDI and in Seminars in Dialysis some years ago ..

    Home HD in Australia and New Zealand: Practical Problems and Solutions. HDI. 2008. 12(Suppl. 1): S26-S32

    And ...

    Home HD in Australia and New Zealand: How and why it has been successful. Seminars in Dialysis. 2011. 24(6): 658-663.

    Maybe you might add these - among a number of other ANZ references that could be added on this issue and that appear regularly in 'Nephrology' - the official journal of the Asia Pacific Society of Nephrology and of the ANZSN that sadly few in the US seem to know exists.

    I have also repeatedly stressed how this odd care-giver fetish and myth is an America-specific characteristic and that it does home HD no favours in you country at every ADC in the past decade. Home HD rarely 'fails' in ANZ. Indeed, as I have also repeatedly said in all my talks at the ADC, our problem is more commonly how to get a patient who WE think is no longer safe at home to return to facility care. We, in ANZ, remain staggered by some of the data quoted from the US and remain incredulous at the stark differences in US dialysis compared to every other developed country in the OECD that promotes and encourages home HD.

    Dori, it is long past time that US dialysis looked outside its own borders to see and learn how home HP and home PD is done ... for, to be honest, it is not understood, or done, or taught, or organised, or administered, or supported in the USA as it is in the rest of the world. Has a US nephrologist ever taken the trouble to register and attend the biennial home HD meeting we conduct in ANZ - one that dwarfs the Home HD Symposium now routinely held in conjunction with the ADC? Not one - in all it's years - except fro Bob Lockridge, Chris Blagg and John Moran who have variously come over the last decade as fully supported invited guests .. not one! Not one has registered for nor attended the UK home HD conference run by Sandip Mitra in Manchester each year .. not one! One might well ask why. Perhaps some outreach into countries who have long done home HD well and successfully might begin to alter some of the ingrained misconceptions that underpin silly stuff like 'train a care giver, and not the patient'.

    For goodness sake .. !

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  • Debi Barnard

    May 9, 3:07 PM

    We trained at a Fresenius Clinic and all instruction was focused on my husband (caregiver). We wanted to participate as a team. The director did everything she could to talk us out of doing home hemo even told my doctor we felt it wasn't the best fit for us. I was furious when I found out. They went so far as to take my husband into the hall and tell him he needed to have me stop instructing him and just sit there! Well, know that didn't happen!

    I finally told them we felt like they were looking for ways to "flunk" us and that we work as a team and I could do most of it myself and I did not want him over burdened. Luckily we had one part time nurse who was just awesome and we do fantastic.

    The is one more area that needs addressed vascular access. Most do nothing to make access accessable for self canulations. Another area where we are suppose to give up control and live with the consequences of infiltration and poor techniques.

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  • Dori Schatell

    May 9, 1:01 PM

    Gale, I was already your biggest fan--who knew there were higher levels of fan-dom? :-) We DO need to change the rules, and it's terrific that you are already doing just that.

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  • Gale Schulke

    May 9, 11:43 AM

    I do not emphasize the need for care partners. I tell patients that they will be doing their treatments themselves and that the care partner comes in for 1 day to discuss emergencies and how to do a manual rinseback. CMS de-emphasized the need for care partners during our survey. DaVita has a minimal list of what a caregiver must be checked off on.
    I agree with the article 100%. The fact is that many patients do not want their "care partner" involved.
    I think it is time to change the rules, so to speak, and offer this modality to anyone who is capable of doing it.

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