October 02, 2014 — Blog Post
Are We Abusing Dialysis?
Being able to understand an illness, condition, or treatment options, and then take the appropriate actions based on that knowledge is something we should all have the right to do. It’s important, for example, to know how and when to take blood pressure medication in order to prevent a stroke or unnecessary emergency department visit. While that may seem pretty simple to clinicians, we know information can easily get lost in translation.
So imagine how difficult things get for patients when the information is much more complex. For people with late stages of chronic kidney disease (CKD), the amount of information they need to really understand in order to make the right decisions for them is astounding. First, they need to understand and be motivated to keep their disease from progressing, with things like medications and diet. At the same time, they also need to consider treatment options for kidney failure (the last stage of CKD) in case they get to that point. There are 3 main options – dialysis, transplant, and conservative treatment.
Transplant is by far the “best choice” in terms of both quality and length of life, but it isn’t something that is available to everyone. For one, it’s a major surgery that requires passing a rigorous health examination, and there are also long wait times for kidneys from deceased donors. Living donation means less of a wait (if you can find someone to hand over one of their kidneys), but that person’s kidney has to be compatible with the recipient’s and both parties have to pass the health exams. To complicate things further, unless someone has a living donor, they’ll need dialysis while waiting for a kidney.
For those people (or others who can’t have or don’t want a transplant), there are multiple kinds of dialysis to choose from and they all have similar mortality rates, potentially making the decision to choose one over the other more difficult. The decision, in fact, should be based more on how the treatment affects quality of life and things the patient (or their caregiver) would have to do.
Finally, there’s conservative treatment. Research has shown that it can mean a much better quality of life.1 In addition, for those who are older and have comorbid conditions, dialysis can lead to functional decline and doesn’t always extend life longer than conservative treatment.1 In this country, of those who are over 80 years of age, one-third have more than four comorbid conditions. For those over 85 years, the median survival on dialysis is less than one year.2 Sadly, conservative treatment is often brushed off as “doing nothing.” Doctors can feel uncomfortable presenting it as an equivalent option and thus patients don’t fully understand it (and shy away from it as a true option). For some people this means spending much of their final time getting lengthy treatments or in the hospital, greatly reducing their quality of life.
There are many decisions to make in regards to kidney failure, and the information is complex and confusing. On top of that, about 23% of patients with CKD have limited health literacy.3 Research has shown that limited health literacy is associated with less access to transplantation and poor self-management skills (needed with certain types of dialysis).3
It takes a lot of time and the right approach (tone of information presented, being unbiased, and an appropriate literacy level) to explain everything involved with these life-altering decisions. It takes even more time to ensure understanding of the treatments, what’s involved with each of them, and how they’ll affect a person’s day-to-day life, quality of life, and lifespan. If conversations around treatment options start early enough, there’s plenty of time to discuss things over weeks and months. Sadly, many people get diagnosed with CKD late in the game, or even when they’re already on the brink of kidney failure. It’s also a daunting and scary decision; many people facing it find it easier to push it to the back of their minds. Unfortunately, once someone has kidney failure and needs treatment now, they don’t have a choice – they’ll be automatically put on dialysis.
That’s one reason dialysis, in particular hemodialysis, is over utilized in this country. It negatively impacts quality of life, with about 20% of kidney failure deaths caused because patients choose to withdraw from dialysis related to pain and dissatisfaction with life, among other things.4 Dialysis is also very costly to the healthcare system. Hemodialysis costs about $90,000 per person each year5 and this cost increases with age and number of comorbidities. Alarmingly, the fastest growing group of patients starting dialysis is the elderly – one reason the total cost of care for kidney failure is projected to grow rapidly.2 The United States spends more per person each year on treatment for kidney failure compared with other countries, yet outcomes of dialysis care are relatively poor in comparison.2
It’s easy to see that there’s a need to ensure timely understanding of treatment options for kidney failure. It can, in part, help with the overuse (maybe even misuse) of dialysis. So, what can we do? We need to make sure patients participate in shared decision making so they can:
- Be presented with ALL of their options in an unbiased way
- Understand the ins and outs of each option (using universal precautions for health literacy)
- Consider their personal values and the things they just aren’t willing to give up
- Understand the risks and benefits of each treatment
- Know how the treatment will affect their day-to-day life (hobbies, careers, family responsibilities, etc.)
Decision aids can help with this problem by presenting all options and information to those with CKD. That way doctors can have better, more enlightened conversations with their patients. Instead of explaining how treatments work, they can focus on answering questions based on a patient’s personal beliefs, and help them make the right decision for them.
1. Tong, Allison PhD. et. al. Thematic Synthesis of Qualitative Studies on Patient and Caregiver Perspectives on End-of-Life Care in CKD. Am J Kidney Dis. 63(6):913-927. Available: http://www.ajkd.org/article/S0272-6386%2813%2901536-9/fulltext
2. Felix Knauf and Peter S. Aronson. ESRD as a Window into America’s Cost Crisis in Health Care. J Am Soc Nephrol. 2009; 20: 2093–2097. Available: http://jasn.asnjournals.org/content/20/10/2093.full.pdf
3. Young, Bessie Ann, MD, MPH. Health Literacy in Nephrology: Why Is It Important? Am J Kidney Dis. 2013; 62(1):3–6. Available: http://www.ajkd.org/article/S0272-6386%2813%2900711-7/fulltext
4. Alan S. Kliger and Fredric O. Finkelstein. Which patients choose to stop dialysis? Nephrol Dial Transplant (2003) 18: 869–871. http://ndt.oxfordjournals.org/content/18/5/869.full.pdf+html
5. U.S. Renal Data System, USRDS 2013 Annual Data Report: Atlas of Chronic Kidney Disease and End-Stage Renal Disease in the United States, National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases, Bethesda, MD, 2013. http://www.usrds.org/atlas.aspx