The Human Cost of Failing to Match Dialysis Modalities to Patient Values
In 1997, I joined the Dialysis Support email Listserv (remember Listservs?) run by Dale Ester, which put me in daily contact with hundreds of dialysis patients and family members. One 2006 post to this group that I never forgot was this one, by an anonymous member who never wrote to the group again:
“Hi, my name is ___, i’ve been on dialysis for 3 years and im only 36 years old. i got it from high blood pressure. well, now i have no friends and im depressed and my life sucks. im a single person with no job and no life. dialysis sucks and i should just die.”
I never forgot this quote, and have used it in many presentations to illustrate the dire consequences of taking away someone’s life to save it. Do people with kidney failure need dialysis or a transplant to live? Of course. Is survival their only goal? Rarely.
Fitting Treatment Options to Values and Lifestyle
In 2008, we at the non-profit Medical Education Institute (MEI) successfully appealed to CMS to get patients the right to be told about all of the treatment options and where to get them in the first update of the Medicare Conditions for Coverage for Dialysis Facilities in 28 years. Sixteen years later, hear that this is still not reliably happening.
After spending the past decade developing two versions of evidence-based decision aids to help patients match their treatment options to their values and lifestyle (My Life, My Dialysis Choice and the updated My Kidney Life Plan), you can imagine my dismay when I recently found a couple of quotes that were virtually identical to the one from 2006.
“The fact of the matter is dialysis is stupid and full of bull. Can’t work so that make u broke and hungry No car so I sit around looking crazy no where to go. They say get a girl how can u get a girl if u broke no car no cloth to put on I’m just here. When I go the center ain’t nothing but old people in there. The point I’m making is wherever going to happen need to happen if that get a kidney or even death I don’t care this is not the life I wanted and didn’t ask for smh.”
“My father is almost 75. He has been going to dialysis almost 3 years 3x a week, 4 hours a day. He hates it and says it’s not a life. He’s always in pain, not feeling well, neuropathy is disabling him, his fistula is in his left arm which is his dominant side, his memory is awful, and he repeatedly says he’s ready to give up. He won’t go on a donor list because he says that younger people need the kidneys and he has lived his life. My mom is gone and he wants to be with he r. He perked up a little about the idea of doing it at home as he hates going to the facility…but could that change his state of mind? Could that make him feel any better?”
As you can see from these words, modality mismatch is not just a young person problem—it can and does affect anyone whose life must drastically change due to intensive, life-saving treatment. We can do better. Our patients deserve to have lives.
New Options Choice Resources from MEI
At MEI, we
are both passionate and tenacious. Next month is the 20th
birthday of our Home Dialysis
Central website, which we launched in 2004 to raise awareness and
use of PD and home HD. We never stop looking for ways to ensure that
people are taught about options effectively. So, you probably won’t be
surprised that we now have two brand new hot off the press options to
help you support your patients’ best lives:
My Kidney Life: A New Direction.
A companion to My Kidney Life Plan, this new, full-color, illustrated book explains the emotional blow of a chronic kidney disease diagnosis and offers ways to cope; makes the patient self-management job explicit—so patients understand what they need to do to produce their own best health outcomes; and outlines kidneys, kidney failure, ALL of the types of dialysis, transplant (recipients and donors), active medical management, and resources. Single copies are $9.95; contact Kristi for bulk pricing: sales@mei.org.
My Kidney Life Values
Each treatment option chapter in the book links via a QR code to a new section of our Life Options website with additional content about each of the 23 values in My Kidney Life Plan in the form of mobile-friendly e-classes. These work on computers, tablets, and—most importantly, since these are what most patients have access to—smartphones. References are coming soon; watch the space!
The single best thing we can do for patients with kidney failure is to match their treatment with their values and lifestyles. We’ve tried to make this as easy as possible. Now it’s on YOU!
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