Is Dialysis a “Horrible Treatment”?
By Peter Laird, MD
A recent link in I Hate Dialysis about a young mother who skipped dialysis treatments and died regrettably at the age of 38 leaving behind young children further brought to light the negative attitude that patients and doctors have towards this remarkable gift of life. Sadly, those that miss treatments are some of the highest risk dialysis patients for adverse events, especially sudden death.
For patients, dialysis as practiced in many units is difficult to tolerate with their tendency to high ultrafiltration rates leading to cramping, nausea, vomiting, hypotension and at times patients actually faint. No doubt, dialysis needs not to be such an event. Longer treatment times, more frequent and gentler approaches to dialysis render sessions well tolerated. Nevertheless, many who dialyze and their physicians view this life saving treatment in negative terms:
Young mum died after missing dialysis
Consultant Nephrologist, Dr Peter McClelland, from the Countess of Chester said: “Dialysis is a horrible treatment. I wouldn’t wish it on anybody.
“But those people who embark on it usually see it has an end point, to make it worthwhile entering those treatments. Most people recognise it is a means to an end.”
I take issue with Dr. McClellands dire pronouncement of dialysis as a horrible treatment. I am currently hooked up to my machine in the comfort of my own home. My wife provided me with my favorite meal, and under my shroud of blankets, I am not in the least suffering. I was able to speak to Rich Berkowitz of NxStageUsers while dialyzing and write two posts for my blog. Dialysis practiced in an optimal manner is anything but horrible. I feel sorrowful not only for patients who do not have access to optimal dialysis, but also for nephrologists who fail to realize the true potential of this noble experiment as Dr. Scribner called dialysis. Dialysis is not horrible at all in the hands of those that use it wisely and with humanely.
Oh, my gosh, what a terrible, sad story. I know that Beth and I worry that some unknown number of people who choose to stop dialysis each year do so because they are getting standard in-center HD treatments, feel terrible, and don’t see any light at the end of the tunnel. They don’t know how much better they could feel with optimal treatments! That’s why we fight as hard as we do to change the regulations, raise awareness, and make it possible for people to know where to get better care.
Great to hear someone with a medical background and first-hand experience saying it doesn’t have to be the way it is for so many people! Seeing it from a parent’s perspective, I may never know what it is like to go through the treatments - as my daughter (transplant now) reminded me so many years ago: “You don’t know what it is like to sit in that chair dad!”. The response when I pressed her to ask for more time. I was also supposed to get out of her life after giving her a kidney, that was ten years ago and I’m still waiting for her to give me the boot.
Anyway, it is great to regain your sort of perspective especially since we lost Dr. Peter Lundin some years ago: http://ndt.oxfordjournals.org/content/16/11/2272.full
About the worst thing that can happen to a kid is losing a parent. Just when I think I’ve developed some immunity to all this, hard image to shake.
For a nephrologist to not be current with dialysis treatment options, to me, would be reason enough to take away their license. I don’t understand the lack of understanding. I think nephrologists should be required to at minimum take annual refresher classes on dialysis. Sure, not all nephrologists ‘specialize’ in dialysis but they have a responsibility to at least direct their patients to a nephrologist who does and point their patients to information sources. I can tell my own nephrologist remains reserved about home dialysis even after he sees the positive effect it has on my life. I don’t understand it.
I ran into a similar attitude with a former urologist of mine. He literally told me to not have my bladder out because of his own fears and ignorance surrounding it. Knowing what I know today, I should have had that surgery years before I did.
I think we need to grab attention with the slogan that we LOVE home dialysis, not just that it’s better etc because people will still think it’s just the better choice between 2 evils. Insisting on the extreme positive position will eventually lead to an informed balance.
I would state that In-Center dialysis is a cruel treatment. It really blows my mind that dialysis treatment is so poor in the United States, especially when there are so many other options. I am lucky that my Nephrologist is on top of all of the new research. Doctors are people too, in other words, they do have bias towards certain things, just as most other people do. When I was on In-Center dialysis, I thought, “I would rather die than live like this.” Then, I read Dr. Agar’s website and I thought, “I do not have to tolerate this nonsense, I am out of here.” I am still alive today because of home dialysis. I would rather contact UltraCare from Frensenius than go back to a center, the care that is given there is criminal.