We are More Than “Patients”: It’s Time for Nephrology to Look at the Whole Person

This blog post was made by Henning Sondergaard on July 16th, 2015.
We are More Than “Patients”: It’s Time for Nephrology to Look at the Whole Person

Today a good friend and colleague of mine passed away. Amongst my friends he was the second longest survivor with chronic kidney disease (CKD). His death made me think of how far medicine has come in taking care of us.

It always saddens me to see how many doctors measure only the most basic physical wellbeing of people on dialysis. The only thing we can always be sure of is that the doctor looks at our labs. And many make all their decisions solely based on the results of those labs.

In the bad old days when dialysis was first introduced as a treatment option for people with CKD, there were basically two methods of measuring dialysis treatment quality: morbidity and mortality. In plain language, how long could someone stay out of the hospital and how long before they kicked the bucket. Looking only at labs is nothing but an extension of that thinking.

Dialysis became an option for people with CKD about 50 years ago. And most of those 50 years have primarily been used to improve the way we look at lab results so we can keep people alive and out of the hospital. Therefore, morbidity and mortality is still to this day the gold standard of measuring how well the treatment is working.

By the end of the 1960’s – only a few years after the advent of dialysis for CKD – a slow change began in medicine. Some of the new doctors began to realize that it is not enough just to treat the disease. If you wanted healthier patients you needed to look at the whole person. This was fairly revolutionary, and as it is with most revolutions, this one developed slowly. In fact, it is safe to say we are still in the middle of it – maybe even just the beginning.

Nephrology was particularly slow to pick up on these changes. They were too busy keeping people alive with dialysis or transplants. And, this kept them from seeing what was going on in the world around them. But in the 1990’s we began to see scientific articles on quality of life (QOL) issues in nephrology 1. And at the beginning of the millennium it became mandatory in the US to include QOL questions regularly when talking to people with CKD.

Tools like the KDQOL-36 2, a Kidney Disease QOL measure with 36 items, were introduced to measure how kidney disease affects people’s lives. KDQOL-36 measures physical and mental wellbeing, the burden of kidney disease, and the effect of the disease on a person’s life. Such tools were a great improvement on the old morbidity and mortality measures. Suddenly kidney disease was put into perspective and the whole person acknowledged.

But that was years ago. And honestly, I think it’s time to move on.

Why are we only looking at health-related questions? All of the people I have ever known with kidney disease are so much more than their disease. At my most provocative moments, I ask the people talking about health related QOL issues why they don’t call it QOD – quality of disease. Because QOD would be a much more apt description of those measures and they are probably important. But they are limited to disease-specific things, and I have yet to meet someone with CKD whose whole identity is dependent on their disease.

What about the life that is lived outside of the clinic? Or between treatments for those of us at home? Isn’t that important in keeping us alive? I think I know the answer to that question—and not just for myself. I have interviewed close to two dozen people on dialysis about what is important to them. And I know from those interviews that what matters to them is the quality of their life and not the quality of their disease.

These are a few of the things they thought meant something to them on a personal level: family, friends, children, support, freedom, happiness, love, intimacy, having choices, understanding, cultural background, and the social stigma of being on dialysis.

Another big thing that came up was the relation between them and their clinic. Some of these are primarily for in-center relations, but many are also for people doing home treatment: clinic culture, how are we met by staff, unnecessary limitations, respect, power relations, exclusion, support (or lack thereof), trust, taking responsibility, flexibility, poorly informed users, risk of infection in a clinical setting, leaving decisions to the wrong person (goes both ways), information and help to relatives, demands, and dependency.

I deliberately made the second set of issues longer than the first one. Many of the people I talked to felt the issues they had with their clinic were a greater burden than the disease itself. I am not sure how we approach these issues. But it seems that it’s time for professionals to turn their scope and look inwards. How do we create clinic cultures that are conducive to treating human beings and not diseases?

It would be a start to realize that we are all just people and nobody is better or more important than others. The old us-and-them dichotomy3 has to go, once and for all. I have kidney disease, but I refuse to be a kidney patient. Patience has never been my thing and the word “patient” stinks to high heaven. I define myself as an advocate and a psychologist for and researcher into kidney related issues.

Yes, I have to do dialysis, because otherwise the advocate, the researcher and the psychologist is no more. And my kind friend dying today only makes me want to do more so that those who come after us might live healthier, better, and longer lives than those who came before us.

It is time for medical staff all over to realize that we are all people. And working in a medical setting requires treating the whole person and not the disease.

As another friend always reminds me: “It’s not the days in our life that counts, it’s the life in our days.”

  1. Hays RD, Kallich JD, Mapes DL, Coons SJ, Carter WB. Development of the kidney disease quality of life (KDQOL)instrument. Qual Life Res 1994, Oct;3(5):329-38
  2. https://www.kdqol-complete.org/
  3. http://homedialysis.org/news-and-research/blog/37-getting-rid-of-us-vs-them-in-dialysis


  • John Agar

    Jul 17, 2015 9:40 PM

    Dear Henning

    Don't get me wrong ... and I know you don't - just saying ... I agree with everything you said. Put in as few a words as possible, 'we' have got it completely wrong. Or, better, 'we' have ballsed it up! The problem is - how do we start to turn the Titanic, or even make it recognise it needs turning?

    You and I have been developing a conversation (others will not yet know this is so) to start a rapprochement process ... and, your comment about the lack of a recognised, widely-viewed platform to put forward the patient view is so very true.

    As a means of advancing my 'fireside chat' conversation with a patient concept (again, to date, only you are aware of our work on this) ... perhaps we might enlist the help of the Dori's out there to select and promote a platform for this to occur. One clear forum is the ADC - a conference that, enlightened from its' inception, has always welcomed and encouraged patient participation.

    Just imagine the 'fireside chat' we have been working on, you and I, being accepted and selected as a Plenary session at the ADC. Now that would have a unique power!

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  • David Rosenbloom

    Jul 17, 2015 4:52 PM

    I can feel the "pain' in both Henning's and Dr. Agar's voices. As a kidney patient, I understand it all too well; as a patient advocate and acquaintance of several wonderful, committed, humanistic doctors, (Dr. Agar included), I understand their frustration and fatigue of constantly fighting uphill battles against slim odds.
    It's not fair to paint all nephrologists with the same broad brush, nor it is wise to put all patients into the "one size fits all" treatment mentality as happens daily with in-center dialysis. Henning is correct when he says the treatment of CKD has not advanced beyond the analysis of lab results, particularly in the U.S.

    Over the last 30+ years I've been intimately involved with the medical profession as a patient. In that time, it has become a highly technical discipline where doctors are trained to be skilled detectives seeking technical solutions. What they, as class of professionals, have lost is the "art" of medicine, and in the case of nephrologists, the ability to make intimate contact with patients as complex but interesting and often fun-loving people, who happen to have kidney failure. In their technical search for cures, they have enshrined data and lost sight of the importance of anecdotal evidence, so common to laymen.

    It hasn't happened consciously or intentionally, but as medicine has become more corporatized, more and more doctors have become "mechanics," and that has limited their ability to take risks, to experiment, and advance medicine beyond a discipline in which only they are comfortable. They need to again understand that patients are their partners, who need to be educated to work along side of the doctor, not in fear of or against them.

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  • John Agar

    Jul 17, 2015 3:03 AM

    Dear Henning

    Though what you say is, sadly, mostly true, there are many good and committed CKD and CKD5d doctors out here who, submerging as they are under a tsunami of CKD, do their very best to provide as good and holistic care as they can … and who DO care - very much - for the suffering of their patients.

    Managing chronic disease is, of itself, a weighty task. While the weight and burden of disease for the individual with the disease can clearly seem to be (and is) intolerable, the individual physician who manages many the hundreds of his/her patients who bear that burden, shares, in small part, some of each of those burdens too. The sum of those weights can also be, patient upon patient, problem upon problem, year upon year, a heavy burden.

    Physicians are human, too. Physicians tire. Physicians may also, at times, have bad days. While I do not mean this as a cop-out or an excuse, many may seem to - or, in fact, will - retreat to hide behind facts, figures, and numbers … 'concrete things' that provide a sense of protection against what can be a never-ending wave of clinical problems and emotional demand … as each individual CKD5d patient seeks answers for problems for which there may be no answer at all.

    En masse, this press on the physician for solutions - where often there may be none - can feel like drowning. If, in addition then, training - especially in dialysis where the problems are worst and the need most acute - is limited, inadequate, poorly targeted or, in many cases, has been ignored entirely - as seems to be the case in some jurisdictions - then the physician may feel even less well equipped to cope and manage … and the retreat to the comfort zone of laboratory data and away from empathy can seem like a rout.

    I suspect most of ‘us’ really do start out with a measure of altruistic intent to help and heal but, as the years pass, and the realisation dawns that, for all that intent, we are under-equipped and under-resourced (in the many guises of the word ‘resource') to succeed … is it any wonder that many physicians fall victim - in the eyes of some of their patients - to a seeming lack of empathy? … or seem all-cared-out?

    I think you know me well enough to know I don’t offer this as an excuse … it is simply an explanation that should be considered by patients when generalisations are made about a lack of caring, a lack of seeing the patient as human. In the end, physicians are human, too. Physicians have foibles, inadequacies, and sleepless nights too … they also bleed, get sick, and die.

    So … while your blog is fair, and true, and thought-provoking … remember that there is always another side to the membrane.

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    • Henning Sondergaard

      Jul 17, 2015 1:33 PM

      Dr. Agar,

      I absolutely agree with you (as I suspect you already know)

      There are many great physicians out there and I can easily say, both from personal experience – as a friend and not a patient – and from your general reputation amongst colleagues and patients, you rank very high in your field. But when I listen to patients in my country I also know that it takes more than one good doctor to make things work. I am at a great clinic where doctors, nurses and other staff go a long way to make us all feel welcome and treasured as human beings. But I came from a clinic where one of your personal friends and colleagues has been a doctor for many years and people are fleeing from there in droves despite this one doctor being very personable and conscientious.

      Just like it takes a village to raise a child, it takes a clinic to treat a person with respect and decency. I know I am being thought-provoking. But one of my underlying messages is that despite the plethora of people representing all sorts of professions there are very few people out there representing the ‘patient voice’ and even the few of us who actually get to speak up never really get to do it in the places that matter – like the big conferences, the important publications and other such venues. So I often feel we have to be even more provocative than necessary to be heard and applauded.

      One thing I am pretty sure you and I can agree on, is that as long as in-center is the fallback option for hemo-dialysis there is something fundamentally wrong with the way we treat people with CKD5d.

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      • Marcia

        Aug 13, 2015 5:51 PM

        Thank you to both of you for having this conversation in full view. It's a very important and neglected one.

        I have ESRF and about 6-10% kidney function (depending on the day). By now, by the book, I should be on dialysis. I am not yet and I feel quite well (except for a lack of stamina from anemia). I am lucky enough to be both a good advocate for my own needs, a good reporter/historian of my status, and to have a nephrologist who goes by more than my lab results. Even though I have been personally fortunate in these regards, I am enormously discouraged-- across the board-- by "modern" Western medicine. It is tragic beyond measure that dialysis has advanced so little over so many years. I remember as a young child (I'm now 73) a good friend of my family had kidney disease and was on dialysis. What he went through sounded pathetically similar to today's state-of-the-art. Somewhat refined, but same old same old.

        I used to be Psychologist, so the whole person was my bailywick. I wish more MDs had at least some grasp of that realm.

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