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    « Glenn Chertow, MD to give ADC 2011 Keynote Address | Main | NxStageUsers Conference Pioneers Home Hemodialysis »

    October 04, 2010

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    somerville

    The Wall Street Journal article provides a one-sidedly positive view of home hemodialysis, which has to be corrected by an appreciation that 22% of home hemodialysis patients drop out of the program because they find the burden of treatment unendurable, even compared to the alternative, which is the massively burdensome treatment modality of regular hemodialysis. (J. Charnow, "Burden of Daily Home Hemodialysis Prompts Some Patients to Stop Treatment," Renal and Urology News, 25 March 2010) While it makes a good slogan to say that patients become "more active participants in their treatment" with home daily hemodialysis, tolerance for active participation in daily tasks is a limited resource, especially in sick and anemic patients, and intensive dialysis diverts much of this resource to activities outside the natural interests of the patient, thus reducing his quality of life.

    The characterization of peritoneal dialysis was also misleadingly roseate. To let stand uncorrected the patient's statement at the end of the article, that if you just follow the proper peritoneal dialysis technique you will be fine, simply obscures the reality that much peritonitis in this patient group arises from sources of infection occurring naturally within the abdomen rather than transferred to it by poor patient technique.

    Peter Laird, MD

    Great article Bill. If America significantly increased the number of people on home hemodialysis, we would see a dramatic reduction in mortality as well as improved numbers of people surviving on the transplant waiting list. The two treatments are complementary, not competing. If we were able to tie this together with improved prevention strategies, America would greatly reduce the burden of kidney disease.

    Dori Schatell

    Just for the record, I was actually told that I would NOT be quoted, as the article was already far too long. If I'd known, I would have chosen my words with a bit more care. :-)

    Somerville, I do think that short daily home HD can be quite a day-to-day burden. But I also think that training programs tend to lack partner and relationship support, so people don't know what they are getting into or how to negotiate change. Also, programs that encourage the partner to do all the work (as if they must become a PCT) do these couples a disservice. I think more people could succeed on short daily home HD with better support. A switch to nocturnal--which takes far less time out of the day--would also likely help many of these couples.

    Some of the better PD programs have patients who typically go as long as 7 years before having a bout of peritonitis. It really is largely--almost entirely-- preventable.

    Miriam Lippel Blum

    I saw the print version of the WSJ article today and thought it was pretty good.

    Somerville, if 22% dropped out that still means 88% stayed with the home modalities.

    Dori, I agree that there is not enough care-partner support and that contributes to the failure rate.

    somerville

    Partner support is yet another factor which will limit the public health significance of daily home hemodialysis. At one end of the spectrum are the older partners who may themselves have issues with illness, limited visual capacity, declining energy, or limited ability to learn new techniques. At the other end of the spectrum are the younger partners who have stressful and demanding full-time careers which may well be incompatible with the investment of time and energy that daily home hemodialysis requires. That leaves a small group in the middle who are either stay-at-home partners, retired, or part-time workers who are capable of helping with dialysis. Since having a partner in this select group may not correspond to being the type of patient for whom daily home hemodialysis is possible or desirable, the area of overlap of these subsets will even further narrow the group of potential users of this option.

    The more nephrology has to enlist the active support of healthy partners of renal patients to make daily home hemodialysis possible, the more the burden of the disease is spread through the society, so that it now affects not just the patients themselves but even their family. It is a mistake to focus on the improved health of the patient as the only outcome of this intensive intervention without first discounting all the costs in quality of life, not only to the patient, but now to the home hemodialysis partner as well.

    Reflecting on the very high price that cancer patients pay in suffering through chemotherapy, radiotherapy, and surgery to gain a few years of additional life; that diabetics pay in brain-damaging or even lethal hypoglycemia episdoes, strict diet, and strict blood sugar control regimens to survive longer; and that renal patients and now their family pay in loss of life quality in complying with burdensome daily dialysis demands to get better health outcomes, we can formulate, on analogy with the conservation of energy theorem in physics, a conservation of disease theorem: Disease can never be cured, but it can only be changed in form from a loss of life expectancy to a loss of life quality.

    Dori Schatell

    Somerville, you are forgetting that most of the 91.7% of folks who do in-center HD also have partners. Those partners may need to:
    -- Quit their jobs to transport/care for a debilitated partner who feels so lousy after a treatment that s/he can no longer work, even if still working-age. (The patient can get disability; the healthy partner cannot).
    -- Take on additional roles around the house that the dialyzor can no longer do. Mow the lawn. Cook (2 meals--one in-center hemo friendly; one "normal."). Clean. Do laundry. Pay the bills. Walk the dog. Take the kids to school.
    -- But, there's not a lot of compensation in terms of fun time, because the dialyzor who gets treatment in-center has a really hard time planning ahead, since s/he never knows how s/he will feel from one day to the next. Travel is a challenge that must be planned often months in advance, with last-minute changes from clinics whose slots are now full...
    -- The standard in-center hemo dialyzor may also lose interest in or ability to have sex with a partner. (This is often improved by transplant and/or more dialysis).

    We often see this myth that standard in-center HD has no partner burdens, but home HD is highly burdensome. The burdens are different, but they are there for both.

    IMHO, nocturnal treatments (PD or HD) give a better ratio of treatment time to quality of life. Or a good transplant with no unpleasant side effects, of course.

    KitsapRiver

    Bill, when your care partner works full-time and you have only the evenings together, and those evenings are now taken up 100% by home hemodialysis, how do you keep your marriage alive? We now have no more "couple time alone" at all. The two nights a week we take off from dialysis are the two nights we spend playing Dungeons & Dragons, which does not count as couple time alone.

    How do you preserve what was until very recently a thriving marriage until the day, whenever our mutual home hemo program decides that is, that I can start nocturnal home hemo? How do you compensate when you have had to go from 5 nights a week of couple time to none thanks to your center's protocol of not starting people on nocturnal for an undefined period of time?

    Peter Laird, MD

    Partner support is an issue for all dialysis patients as Dori eloquently pointed out. For myself and my wife, she is huffing and puffing away on her exercise bike right now while I am freezing away on my NxStage. Three blankets does the trick. Now, the pain and suffering that my wife does on the exercise bike is MUCH worse than what I do on my little machine. Both will enhance our longevity greatly but both require an effort to reap the benefits. I could NOT get 23 hours of dialysis/week anywhere in my system at the present time without going home. Simply not available in any other format at present for me.

    Kjellstrand just published a paper I commented on a couple of posts ago showing a direct correlation between survival and length of time on the machine each week. I will go with the survival benefit just as my wife who hates her exercise bike is doing the same.

    By the way, my exercise is getting all of my 2000 pounds of dialysate shipping out of my wife's living room and UPSTAIRS in few days time. Talk about pain and suffering!! but alas, that is part of my exercise program that actually makes me a little bit stronger than I would be without it.

    Does home dialysis take dedication, absolutely. Does home dialysis cost us in doing it? Absolutely. Is home dialysis for everyone, No it is not. Is home dialysis my best option? Absolutely without question as it could be for thousands of other people if the false negativity about optimal dialysis would fall away to the truth that so many other nations already know, more is better and home is the best place to get more. America is way behind the power curve on this issue.

    Peter Laird, MD

    As far as couple time, I came from a work schedule where I worked an average of 80 hours a week and sometimes, actually most times more. Since my wife has become directly involved in my daily dialysis care, perhaps simply for pure survival reasons, we have become closer by this experience. It certainly was not an easy transition for either of us, but after nearly a year and a half, it is just part of our routine, My wife is still quite free to do her errands around the house and it actually in the end does not impact our lives negatively at this point. Once again, she hates her exercise machine but is grateful for my dialysis machine.

    For many, the nocturnal program is a better way to go about the dialysis issues, but many sleep in separate rooms to keep from bothering the sleep of the care partner. Everyone needs to look through the available options for what works best for their situation. For many, transplant is the best option but others like myself have relative and absolute contraindications to transplant, so daily dialysis becomes our best survival strategy. PD is another option that does not require a care partner with the problem of how long it will be effective. After about two years, changes in the peritoneum limits it effectiveness for many people.

    Renal disease is not at all easy to deal with no matter what renal replacement therapy people consider, but many such as Bill do well with the nocturnal program. We are truly blessed to be here 50 years after Dr. Scribner's innovation and not before that time when CKD-5 was uniformly fatal. We need to get more people home and out of the unit through the many alternatives we know enjoy. To look upon our treatment options negatively is truly bizarre to me given what the options were before the 1960's. I am sure that all of those that died with NO treatment options would gladly have wanted to have the options that we complain about today. I must truly wonder whether we have lost sight of how much we should be grateful for in this country?

    Every time Somerville places an out of place negative comment on optimal dialysis I just sit back in amazement at what we actually have as treatment options and know in my heart that I am thankful that people like Dr. Scribner and all of his colleagues remained dedicated to saving lives. And that they did. The battle that Dr. Scribner entered into is for from over, but we have so many options today and many more coming soon. I am thankful and I know many other people that share this sentiment. It may not be easy to deal with my renal disease but I do have the option of dealing with effectively today. Thank you Dr. Scribner once again.

    Bill Peckham

    @KR I think it is different for everyone but Dori's point about extended matches my experience. I feel like I have a lot more free, productive time since switching from evening to overnight treatments.

    Given you need hemodialysis, I think at home you have more flexibility to find the right balance.

    Everyone's situation is different but it seems like you could play DD while dialyzing.

    Bill Peckham

    @ Sommerville
    The Wall Street Journal article provides a one-sidedly positive view of home hemodialysis, which has to be corrected by an appreciation that 22% of home hemodialysis patients drop out of the program because they find the burden of treatment unendurable, even compared to the alternative, which is the massively burdensome treatment modality of regular hemodialysis. (J. Charnow, "Burden of Daily Home Hemodialysis Prompts Some Patients to Stop Treatment," Renal and Urology News, 25 March 2010)

    What's the washout rate for people seeking a transplant? I would be much more worried if no one went back incenter.

    Partner support is yet another factor which will limit the public health significance of daily home hemodialysis.

    I dispute the idea that a partner is necessary or desirable. Self dialysis to the extent possible should be the HHD model but I didn't see myself in your list of potential dialyzors.

    somerville

    Whether the support burden on the renal patient's partner is greater as a result of in-center or home dialysis will no doubt vary with each family, but I suspect that it will generally be worse for home hemodialysis. Many patients will be concerned about their ethical duty to keep their own illness from spreading to their partner, in effect, in the form of the heavy burden of support demanded for home hemodialysis.

    Although in theory home hemodialysis can be done without a partner if one has the right type of machine, many hospitals require a partner, often for legal reasons, whether one is actually needed or not.

    I am not really sure what is meant by the 'washout rate for transplant'? How many people find taking pills twice a day too much to cope with? While some patients do refuse to comply with their immunosuppressive regimen, this seems to be more attributable to psychiatric problems in the patient than to the imposition of such problems by the therapy itself.

    Given that 25% of dialysis patients ultimately opt for a death which they find preferable to the continued burdens of their treatment, it is misleading to argue that the renal patient community has to reconcile itself to the oppressive burdens of the various treatment modalities available since the only alternative is death. With dialysis, we have finally reached a point where the quality of life is so low that the question is not which modality is best, but rather, is any modality preferable to death? The answer to this question is not medical but psychological, social, and philosophical, and each patient has to decide these issues according to his own scale of values.

    Dori Schatell

    @KR: I do think that short daily takes a ton of time out of your day. But how does it work that it takes up 100% of your evenings and somehow doesn't give you time together? Folks I've heard from use that time as (some of) their couple time. They watch TV together, choose movies, play cards, or whatever. So, I'm curious why this doesn't work for you while you wait for nocturnal (hopefully you'll get that soon!).

    roberta mikles

    As I read through all the posts I was reminded of the following: In the six years my father was on dialysis, he was only asked once, maybe twice, at the most, if he wanted to do home dialysis. Along with the good care he received, he also received care from some staff that was overtly retaliatory, as did I. His relationship with his physician was less than desirable. These factors made us consider home, but because of other problems with his access site, he elected not to do home. He was not able to have a buttonhole which would have meant sticking each day in a different place and we were advised against such. Perhaps if, at the beginning, his buttonhole was done correctly, he would not have had a problem. With pseudoaneurysms, due to, according to the interventional nephrologist, staff not cannulating correctly, this supported home even more. I even remember speaking to a few experts in buttonholes who even said they would come to the unit to provide direction,but the unit would not allow such. Anyway, to get on with the story....Once bundling was announced staff started having contests, from Corporate, with buttons that they designed focused on home dialysis. Posters were like wallpaper on one wall pushing home dialysis. I just found this interesting considering this ONLY happened after the bundling information was released. So, I ask the providers, if you have the patient as the priority and the first concern is the patient's well-being, then why were these posters not hanging like wallpaper long before the bundling rule?
    Roberta Mikles RN
    Dialysis Patient Advocate

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