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.”
- 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 ↩