A Bridge to Freedom
A few years ago, I attended a workshop at the Humber River Regional Hospital in Toronto, Canada. The staff at Humber River was conducting an educational seminar to potential participants in a new program. A 13 year old girl who had been diagnosed with ESRD the week before was there with her mother. Both the girl and her mother asked many questions and were receiving compassionate but very realistic answers. I will always remember one question the mother asked. “Will my daughter ever be able to live a normal life?” This blog is going to attempt to answer the question: How do you get from a lifetime of in-center dialysis to freedom.
The new program was called nocturnal home hemodialysis. Patients slept for 7 to 8 hours while on dialysis. A logical question would be why would anyone do this? The reason is that the clinical outcomes clearly show a dramatic decrease in medications, a dramatic increase in energy, and much better clearance results. So, why would some not do this? There are a number of reasons and these reasons constitute the impediments to success that form the planks of the Bridge to Freedom:
The patient has to listen and understand the benefits
The patient has to believe s/he can take this path
The patient has to be empowered to self-cannulate
The patient has to believe s/he can be successful. The reason I was in Humber River that day was as a result of belief. The staff and administration at Humber River had come to believe that patients were capable of controlling their own future, even in the face of ESRD. The doctors and staff believed it—and then the patients believed it as well—and it became a reality. The initial prospect might seem daunting, but take the time to find and talk with successful patients and be encouraged that a normal life is possible.
One of the biggest hurdles to successful nocturnal home hemodialysis was the securement of the catheters and needles. Our specialty is Velcro, tape, and adhesive design, and we were asked to develop devices to address this need, which we did. Those products are in use today. However it was not long before we realized the most significant impediment to home hemodialysis was the challenge of self-cannulation.
Today, many patients are educated about all of the modalities available for treatment. Many nephrologists, working with their nurses and technicians, are taking the extra time to identify patients who recognize the benefits of home hemodialysis and who have the ability and temperament to select this path to freedom. However, the major stumbling block for selecting Home Hemodialysis or Nocturnal Home Hemodialysis is self–cannulation.
Self-cannulation is the key to freedom. There is still only one best practice when it comes to dialysis access, and that is use of a fistula. Most self-cannulators use the buttonhole technique, which allows use of a blunt (not sharp) needle. The combination of patient confidence and the buttonhole technique has dramatically increased the number of patients who choose home dialysis, because successful home hemodialysis almost always is achieved when the patient cannulates his or her own fistula. Even if there are care partners who help, it is still much better if patients can consistently perform this vital process themselves. The reasons for this are many:
One is that a capable patient will be the most consistent cannulator.
Another is to protect a care partner from burn-out.
The most important reason is that self-cannulation truly gives the patient freedom.
The bridge to successful, consistent, life changing freedom for ESRD patients is the power to dialyze when and where they choose by themselves.
To encourage self-cannulation, many facilities are encouraging patients to self- cannulate in-center. This practice enhances patient independence, and many clinics have found it to be a best practice because of the cannulation consistency of the patients themselves. Also, the Alliance for Home Dialysis and other patient organizations are working with the government to facilitate home hemodialysis for a much larger percentage of the ESRD patient population.
This path is not easy, but recognizing the value to the patient of home modalities can inspire all parties concerned to make the effort. The cooperation of government to pay providers is required to follow this approach, as well as to allow for continuing the effort at reinforcing training even after the patient is dialyzing at home.
The question for the clinician, then, is what is our role in this? How can the medical community help patients bridge the gap between a three days a week clinical experience and the freedom of dialysis when and where the patient chooses? From most sources available to this writer, the answer is advocacy. While advice from doctors and nurses is informational and is very important, the need for constant improvement can be enhanced by working with other patients who have been there. Currently there are a number of traveling advocates who make themselves available to present ideas and to answer questions at clinics. However as home-hemodialysis becomes more widespread many clinics have good advocates (if they are encouraged) available from their own patient populations. One of the newest ideas is that home patients actually come into the clinic and have “home dialysis” in the clinic, where new and experienced patients can come together to observe, ask questions and improve their techniques and problem solving skills.
The answer to the question that mother was asking in Toronto lies with her daughter. A very close to normal life is available to any ESRD patient who has the courage and tenacity to take charge of his or her own future and cross the bridge with knowledge, belief, and a determination to be independent. Modern medicine makes it possible—with a willing and committed patient who sees the value of self-cannulation and the freedom of anywhere, anytime dialysis as the means to a normal life.