Home Dialyzors in the Hospital—the Least Dialysis at the MOST Vulnerable Time

This blog post was made by Henning Sondergaard on September 29th, 2016.
Home Dialyzors in the Hospital—the Least Dialysis at the MOST Vulnerable Time

Three months after I started on home hemodialysis I was witness to a sad tragedy. At the time I didn't know it, but this is something that happens on a regular basis to us HHD folks—albeit due to its sinister nature, it only happens once to each of us.

A friend was hospitalized. Not necessarily because he was acutely sick. He needed some tests done on his heart and his vascular system. He had heart issues because he had been on dialysis for over a decade, first in-center and later at home. He died while in the hospital. Or should I say: They killed him while he was having tests so he could have a better life. What killed him was the fact that they refused to dialyze him adequately. Their reasoning was that three times weekly "is what we do because that is what we have always done."

My friend became more and more sick during his days behind the walls of this institution. He was not used to the draconian fluid "management" that goes on with thrice weekly dialysis. He was not used to the 2- day weekend1—also known as the "killer gap." He was not used to short, inefficient treatments that didn’t clean his blood properly and kept him barely alive—and in this case went just over the threshold of what his heart could handle. So, it stopped beating after 50+ years. The very same heart they were supposed to look at and treat, they were not able to keep ticking because of bad dialysis practice.

This is not a one-off.

When I talk to people, I hear about hospitals all over the world that refuse to give home patients adequate treatment. I really hope there are places where home HD folks actually get the treatments they are supposed to. But, I just don't know about it (yet). Personally, I have been told by my hospital that they can't give me adequate treatment because they don't have the (human or financial) resources to do so—all they can offer is thrice weekly-death-dialysis.

For quite a while I have compared in-center dialysis to giving someone with a migraine a pain reliever once a day. But then I heard a doctor comparing thrice weekly to treating a cancer patient with half a dose of chemotherapy, and that is a much more accurate comparison. We have a life-threatening disease and the standard treatment is as little treatment as possible as rarely as possible.

What other field of medicine has such poor standards for treatment? I personally know of none.

What if the aforementioned cancer patient was offered every other chemotherapy treatment unless s/he did the treatment at home and saved the cancer center tons of money by doing so? (Home chemo is on the rise, so this scenario is not farfetched.) There would be an outcry among patients, doctors, and other professionals if such a thing should ever happen. The treatment regime would be changed immediately, and whoever came up with this harebrained idea would face serious legal and moral consequences. As well they should.

My point is that such a ludicrous practice has been going on for more than 50 years in dialysis. And, not only has it been going on, but it is the accepted standard in most of the world. Ever since dialysis was introduced to treat people with chronic kidney failure, the standard has been thrice weekly. Even though home dialysis was initiated in Boston, London, and Seattle in 19642 not too many years after the invention of the first shunt that made it possible to dialyze people with chronic kidney failure. In the beginning, there was a good reason for thrice weekly treatments. They were based on a cost-benefit analysis that included the price of dialysis and the limited number of machines available at the time. But fifty years have gone by, folks. Fifty! And the practice has not changed. Where else in medicine do we use a fifty year old standard when we know of better options? When we know the standard is barely enough to keep people alive—even when they have no co-morbidities. This is nothing short of scandalous! In fact, it might be the greatest perpetuating scandal in modern medicine.

All that aside, what do I personally do when I can't avoid being in the hospital and I am offered such inadequate treatment? I simply tell them I am going home to dialyze on the days in between their treatment days. I don't ask about it, I simply just announce beforehand that I intend to go do my necessary treatments on these days and that I am unavailable for exams and other treatments because my dialysis is the treatment that keeps me alive, and therefore all other treatments are dependent on it. I admit that this attitude is based on a number of privileges that are given to me—or I take them because I can. I live no more than 10 miles away from my hospital, making it easy to go home. I have nurses and doctors who see the advantage of me leaving to do my treatments, because deep down they disagree with the policy of the unit. I have yet not been sick enough to not being able to do it, though I have been in isolation a few times and just up and left regardless. I have not met enough resistance from anyone for me to stop doing it.

Like I said above, I have been lucky enough to be able to do my own treatments so far. But what do we do to get the same adequacy that every type of patient expects when in the hospital? I would love it if we could have a discussion and find some ways to convince nephrologists around the world that they are literally killing us with the inadequate treatment options they provide, both to the majority of their patients who suffer in-center and to us home patients when we need adequate treatments the most.


  1. Bleyer AJ, Hartman J, Brannon PC, Reeves-Daniel A, Satko SG, Russell G. Characteristics of Sudden Death in Hemodialysis Patients. Kidney Int. 2006 69:2268-73

  2. Blagg CR. Home haemodialysis: ‘home, home, sweet, sweet home!’. Nephrology (Carlton). 2005 Jun;10(3):206-14

Comments

  • greg francis

    Oct 24, 10:56 PM

    I have another slant on all the comments that have been posted .perhaps I am an unusual dialysis patient . I have just returned from a 14 day cruise with dialysis been provided on the ship All my medical records were provided to the Dr and the medical teem well before I was excepted as a patient.
    One noticeable difference is that I only require dialysis twice a week, my UF rate being 88 ml/h giving a UF goal of 350 ml
    total for a four hour treatment. I am a hhd patient and have been on for just on 5 years.My first treatment on the ship was a disaster as they took off 350 mls every hour, this resulted on not been able to stand for nearly two days and I felt quite ill, Iam not sure how I can take this any further they of course are well covered in all there paper work. You can not take any legal action against them. Would be interested in any thoughts in what happened to me.

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  • Eric Weinhandl

    Oct 4, 10:52 AM

    Henning,

    I applaud you for giving voice to this important issue. There are several dimensions to consider, but I'll share one that is more policy-oriented.

    CMS (Medicare) has focused much of its metric-oriented activity in the dialysis patient population on outpatient dialysis facilities. I refer to the standardized mortality ratio (SMR), the standardized readmission ratio (SRR), and other process metrics of heterogeneous importance.

    These metrics are interesting and perhaps they are valuable. However, the singular focus on dialysis facilities implicitly absolves all other institutional health care providers of grading. It would not be difficult for CMS to publish standardized readmission ratios that are germane to dialysis patients, but are indexed to the discharging hospital, rater than the dialysis facility.

    Dialysis patients interact with multiple providers, but the regulatory structure supposes that the dialysis facility unilaterally determines outcomes. We know that the world is not so simple.

    Even more broadly, we know so little about what happens to dialysis patients in the hospital. Dialysis frequency is one important detail, but there are others! How are drugs dosed? How many infections are acquired? The structure of hospital claims to Medicare precludes assessment of these clinical details. Studies of EHR data are needed to better delineate what happens in the inpatient setting.

    We --- and I am a part of "we" --- have grown so accustomed to categorizing hospitalization as an *outcome* that we have failed to adequately consider hospitalization as an "exposure" to new risk.

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    • Henning Sondergaard

      Oct 4, 1:27 PM

      Eric,

      I know a lot of this has to do with policy. But for one, I am not just talking about the US, this is a global problem that is above and beyond US policies. To give you an example, I get my dialysis thru the same nephrology ward I will end up in if something goes wrong, however the script that my doctor has given me does not apply while I am in the ward because they claim not to have the capacity to maintain my health while I am hospitalized. That is nothing short of outrageous, if you ask me.

      It seems to me that dialysis should be treated no different from any other treatment you receive at home, e.g. medication. When it comes to medication everyone gets what they are used to. Nobody would ever dare to alter that unless there was a medical reason for doing so. But not so with dialysis. Here we give people "as little as possible as rarely as possible" as I wrote above. it's not like we take away oxygen every other day from patients who need it.

      Now, your last statement is really interesting. What causes the blindness when it comes to seeing hospitalization as a risk-factor? Everyone knows that hospitals are dangerous places - especially for those of us who are seriously ill. I can't help but think there is a resistance to admit it among healthcare professionals. It is always difficult to admit what you are doing is not quite good enough. And maybe they are doing their best. But at least we should look into how we can lower some of the risk factors we encounter. And one of the greatest risks in nephrology is certainly inadequate dialysis. Both in clinic and while hospitalized.

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  • Amanda Wilson

    Oct 2, 10:28 PM

    I was in hospital during the summer, and when it came to dialysis, I didn't even ask for more days, just to run for longer. The answer was 'no', we will prescribe a three and a half hour treatment (yes this was a nephrologist who wouldn't agree and when I told her I was doing nocturnal, asked me why I didn't want less hours three times a week). I went in on Monday evening having dialyzed previous night, and was discharged on the Thursday. They dialyzed me on the Wednesday. I was so glad to get out of there before the treatment on the Friday, as I was so leery of poor technique of dialysis nurse.

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    • Henning Sondergaard

      Oct 4, 1:08 PM

      Amanda,

      You were lucky you didn't need to be hospitalized longer this time. I have also asked for longer treatments, and I have gotten it once in a while but only if it suited THEM.

      And how dumb can that nephrologist be to ask if you didn't want less dialysis. I think we should suggest cutting off their kidneys for 156 hours a week and only let them function for 4 hours 3 days a week and see how they like it. Asking you such a question is borderline malpractice.

      And when it comes to the poor technique of the nurse. Nobody gets to touch me when it comes to my dialysis. My access. My needles. They can set up the machine if they please. But I always hook up myself or there will be no treatment, only an immediate complaint to wherever it matters.

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  • David Rosenbloom

    Oct 2, 9:47 PM

    Hennning has every right to be righteously indignant. Hospitalists have been practicing out-of-date dialysis, largely out of ignorance, for almost 40 years in the U.S. Why? Because so much government money in the form of treatment fees has been poured into building more and more dialysis clinics, largely by for-profit companies, than doing basic research into the causes of kidney failure or prevention of the disease, which has reached epidemic proportions - $30 billion in annual Medicare spending (7% of the CMS budget for only 1% of CMS covered patients). it's no wonder nephrology fellowships are going begging in hospital centers all over America. It's a dying discipline. Like Henning, I dialyzed with HHD daily for many years before my transplant in 2008, and I still meet medical professionals who are totally ignorant of the fact that this is possible! Last week I lectured before almost 200 2nd year students at the Keck Medical School of USC. They were enthralled to hear my story and met it with rousing applause. We are beginning to change minds year by year. It's along fight and we won't give up!

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    • Henning Sondergaard

      Oct 4, 12:55 PM

      David,

      You are completely right. Nephrology fellows all need to learn that the treatment they provide in-center is to be considered 'absolut minimum therapy.' It is enough to keep people alive an average of 5-8 years, but it is not enough to keep people healthy and well. So let's keep on teaching them, one young nephrologist at a time.

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  • Angi

    Sep 30, 12:21 AM

    I live in California and I am an ICU nurse. Our hospital always follow HD days for all pt in center or home HD.

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    • Henning Sondergaard

      Oct 2, 1:30 PM

      I am curious if you also let people follow their nocturnal schedule if they have such.

      One of my problems that I didn't discuss in the blog above is that I am used to 8-9 hours noctunal but when I go to the hospital for whatever reason I am offered 4-6 hours 3 times weekly which amounts to about half of what I am used to. So in order to feel just OK, I am forced to go home and dialyze 3 times weekly during the day which leaves me with only one day where I am not wasting my time dialyzing.

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    • Dori

      Sep 30, 9:02 AM

      Hi Angi, and thank you for your comment. When you say that your hospital always follows HD days, do you mean that you follow the patient's prescription--so if someone gets 5 or 6 days at home, they get that in the hospital, too?

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