You may think that improving treatment for your dialysis patients is solely your responsibility — but the patient experience is a two-way street. And in a field where nurse burnout is a high risk and bloodstream infections are the leading cause of patient hospitalization, it pays to take a closer look at how your dialysis patients can become more empowered to manage their healthcare.
The first step to opening up the road is changing the way you see your patients. Kidney patient advocate David Rosenbloom challenges the assumption that dialysis patients are all victims receiving end-of-life care:
“If this is true… then we patients are all lost; victimized again, not as people who happen to have kidney failure, but as time-dated specimens with limited shelf life… And it totally ignores viable treatment options like home dialysis and kidney transplantation.”
Furthermore, Life Options, a program of the Medical Education Institute, states that an empowered patient is an expert patient. The expert patient is thoroughly informed about their disease, and aware of how it’s affecting their body. They will be often be the mentor patient you call on to help new, apprehensive dialysis patients, and the patient who want to insert their own needles or comes to appointments with a list of questions and updates.
Helping your dialysis patients become advocates and experts becomes even more important when you realize that they spend 92% of their in-center time self-managing their care. On average, your dialysis patients are only supervised by professionals about 14 hours a week, and perform tasks like following the treatment plan, maintaining safety, and reporting symptoms while receiving dialysis — for better or for worse.
This leads to the second step: making the dialysis process as transparent as possible, and getting your patients involved. While this may seem like a daunting assignment, self-directed care can be implemented with the right approach. Richard Gibney, MD, a veteran nephrologist practicing in Waco, Texas, gives his dialysis patients options to what they can do themselves, so they can make the best choice possible.
Another essential component is family involvement. A study in outpatient care looked at patient empowerment from the family’s perspective. It found that family members could best support their relatives when they were able to assume responsibility for their care when needed. The more the family member’s role was affirmed by healthcare staff, the more they felt respected and involved in their relative’s care. This strategy gives dialysis patients a broader base of support in taking control of their dialysis treatments.
A case study from the Institute for Healthcare Improvement indicated the significant effect of self-managed dialysis. When Christian Farman first started dialysis at the Ryhov County Hospital hemodialysis clinic in Jönköping, Sweden, he asked how he could treat himself. Soon he was helping other patients learn to do the same. Now, at least 60% of the hospital’s peritoneal dialysis and hemodialysis patients manage their own dialysis treatments.
The last roadblock to developing patient empowerment is encouraging dialyzing at home. While this may not be possible for all patients, it can work particularly well for those with less blood flow rates and less-efficient vascular access systems. The benefits of home dialyzing, particularly nocturnal, include not feeling “washed out”, better control of excess fluids and blood pressure, and a survival rate of 50-90% respectively.
When we understand that patient involvement is just as important as clinic care, the road to empowerment becomes one filled with opportunities. Teaching and empowering patients about their care can play a big part in ensuring we’re all driving towards improved dialysis care and better quality of life.
