Dialysis: Options Education is NOT Optional (& Tools to Help)
Almost exactly six years ago, on April 15, 2008, the "new" Conditions for Coverage for Dialysis Facilities was published in the Federal Register. During the comment period, we at MEI wrote extensive, referenced comments to suggest some new consumer rights, and shared them widely so others could echo them. Many of our ideas were taken, including the right for people to be told about ALL of their dialysis options and where to get them—even if a clinic doesn't offer the type of dialysis someone wants.
This critical right was left out of the first Conditions for Coverage, which meant that a clinic that only offered standard in-center HD only had to tell people about that option. Imagine someone with cancer only being told about chemo (not radiation or surgery) because that's all an oncology service offers. Unacceptable, right?! We ALL deserve to know ALL of our treatment options. And, in fact, every state in the US legally requires doctors to give informed consent. Yet, despite CMS regulations and laws, some people are still not being told about their dialysis options.
How do I know? I asked members of the Home Dialysis Central Facebook discussion group and got permission to use their quotes (but removed all of their names), and here's what they said:
- "My husband was never told of any options. He started hemo in the hospital last April and was never given any option of hemo or PD. Then once he was out and in center he was never given any other options. I was the one who did all of the research online to figure out his best options and to find places that did home hemo and sit down to talk with them about the training process, etc."
- "We found it [home HD] on our own and pursued the option on our own with a little help from our PCP. They may have mentioned PD at first, but more or less pushed for hemo. PD was something they later told us was an option but I don't know of anyone who went to the center who ever actually did it...even now I only know of two people in our area who do PD and one of them travels an hour away to the same center that we go to. IMO if what they offer is the best option for you that's fine but if there's another option, especially a better option, they should at least give you the opportunity to make your own choice even if they don't offer it themselves!"
- "We were told about PD in our initial nephrology visit but in-center hemo seemed to be their main push. I think they anticipated that my Mom would be on dialysis almost immediately after her first visit based on numbers. But, at 81, she still wants to have all her questions answered before making a decision. So we looked for answers to her questions and ended up on PD after three years of clinic visits. I believe that part of the challenge in our case was that their clinic is segmented. You have in-center dialysis nurses and then you have home dialysis nurses."
- "My center gave me options: in-center, PD, or no treatment! They had not heard of Buttonholes or told me, 'They are not safe or effective.' I had a VERY difficult access AND a very real needle phobia. My Neph agreed HH would be better for me. My clinic REFUSED to allow me to do a Buttonhole b/c they had no techs trained in it! After 8 years the clinic got a new director. She was appalled that I had NEVER been told my HH options AND that when I asked, I was routinely told it is waaaaaaay more dangerous to do HH! As I look back, my heart is sad that I stayed in that stupid center 9 years total!"
- "I was offered in center only, PD was mentioned briefly, but only in a passing manner while I was in the middle of a treatment. I was never told about NxStage. I researched it myself and switched centers to get it. I think I found out about it from ihatedialysis.com. I also got a load of garbage from my old center about how I was going to die if I did home hemo with NxStage. I know it's because I was still in the middle of my 30 month coordination period and they were raking in the cash from my insurance company."
- "I had to change centers to one that offered HH. The Neph who treats me when I am in hospital told me 'under NO circumstances would I recommend HH. You need to trust the people who are TRAINED to care for you!' Since then, he has said my experience CHANGED HIS OPINION of HH!!! WHAT? Ugh! Imagine HIS patients who missed this AMAZING gift b/c of his misguided belief!"
- Someone above commented about us being given choices based on what was perceived as "best for us", but according to WHO? The very people who stand to make money from us being there? I was 36 years old w/3 kids 4-9 I was homeschooling! I had no other heath issues AT All (PD was not option b/c of scar tissue). I should have been the EXACT candidate they recruited for HH! I missed so much time with my kids (1 of whom was 8 & had just finished a 2 year battle w/cancer when my transplant failed). NOT BEING GIVEN INFORMATION impacted me—and THEM—forEVER! Please let's do something!
- I don't remember exactly when the options were introduced (I was in center just under a year and remember having a first real conversation about home hemo briefly early on, and re-visited towards the end), but I was told initially that I would not be able to do home hemo because I was single and did not have a "caregiver". Within a year, I wanted to get out of the center environment so badly, I proved them wrong and completed the training! I just celebrated a year of doing home hemo solo. My home team is learned, accessible, and supportive. It is like night and day, and although there were trade-offs (more work, more time on the machine, etc....), at least I can concentrate on my health and my sanity. I have not infiltrated or bruised myself and my fistula is thankful for it. I am extremely grateful for home hemo, and wishful for better solutions for all kidney patients in the future.
Most dialysis staff are at least passingly familiar with PD, though they may not know the details—and there is an unfortunate and unfair tendency to scare people with dire threats about infection (even though sepsis during HD is more likely to be fatal than peritonitis). But, when I have given talks around the country, I have run into pockets where no one knows anything about home hemodialysis. They've never seen it, no one they know has ever done it or taught it, and their clinics don't offer it.
Why should a clinic tell patients about an option that doesn't yet exist in their area? Because, given the choice of losing everything that is important to their lifestyle, some people have chosen to move – even across the country – to get a treatment they want. And, others have advocated—successfully—to get home programs started at their clinics, once they knew that an option existed. Not telling people deprives them of those choices. YOU would want choices if YOUR kidneys failed.
MEI has developed a trio of resources to help you help educate your patients if you don't yet feel up to speed on all of the home dialysis options. We call it the "Trifecta." Two of these are even free:
- How to Have a Good Future with Kidney Disease – a free, downloadable toolkit with slides, speaker's notes, learning objectives, quizzes, handouts, and a how-to guide for teaching people with any stage of CKD, one-on-one or in groups. Qualified providers, including physicians, advanced practice nurses, physician assistants, but not dialysis facilities, can even bill Medicare for providing kidney disease education1 to Medicare beneficiaries with Stage IV CKD using these slides. And, we've recorded them as video for self-viewing.
- Help, I Need Dialysis! – the low cost lifestyle "bible" that explains the details of every type of dialysis. Written at the 6th grade level for easy reading, it is comprehensive and has more than 600 references. In fact, MEI even offers low cost CE credits for the book for nurses and technicians.
- My Life, My Dialysis Choice – our new, free patient-centered "decision aid" that crystalizes the data in the book into an interactive tool to help people choose an option that will fit their lives and values. Use it first—then explain the options in more detail. The tool is non-commercial, and will help route around the fear and denial that can make it difficult to explain options to those who are new to dialysis.
Patients deserve to know their options and have choices. You can help to ensure that they do.
- Centers for Medicare & Medicaid Services Medicare Learning Network, MLN Matters: Coverage of Kidney Disease Patient Education Services (MM6557).http://www.cms.gov/Outreach-and-Education/Medicare-Learning-Network-MLN/MLNMattersArticles/downloads/MM6557.pdf