Living with kidney failure and undergoing dialysis treatment can be
an incredibly challenging experience. For 10 of the 13 years
that I was on dialysis, I spent countless hours doing my own treatment
at home through home hemo and peritoneal dialysis. Home
dialysis made a significant difference in my life.
Being
on home dialysis allowed me to maintain independence and freedom, which
greatly contributed to my well-being. I had more control over my
schedule and had the energy to engage in activities I enjoyed.
However, there were challenges. Being of shorter stature, I frequently
faced difficulties in hanging bags, carrying boxes and opening boxes.
Consequently, I had to come up with innovative strategies to effectively
manage my supplies and make sure I was set up to do my treatments as
prescribed. Occasionally, I would even experience severe fatigue. For
many years, I lived alone while undergoing home dialysis, and I
frequently had to seek assistance from my neighbors and friends.
Despite the obstacles, the benefits of home dialysis outweighed
the difficulties. Some days were exhausting and overwhelming,
but thankfully I had a supportive system in place. When you have an
illness, constantly asking for help can affect your emotional
well-being. To show my gratitude, I would repay people’s kindness by
making them a meal or a creative holiday craft item.
In my role as Founder and
President of RSN, I speak to many people, and we
have identified several barriers to choosing home dialysis. One
of the reasons people choose not to do home dialysis is that it is
easier to let the staff handle the treatments. It’s similar to
preferring someone else to do your laundry, even if it may not be
exactly how you want it. Also, it can be frightening and stressful to
have to stick yourself, witness your blood being pumped through a tube
in a machine, or take on the responsibly of your treatment.
CMS and the community have several initiatives to encourage more
people to undergo home dialysis. However, the number of people choosing
home dialysis remains relatively stagnant as new patients enter while
others choose to go back to the dialysis center or get a transplant.
With the current percentage of people doing home dialysis (low
20%) there is room for growth in this area.
The National Kidney Foundation has proposed a bill to have
paid caregivers perform the treatments for the patient
at home. While this can be helpful, especially when the patient isn’t
feeling well, it also means relying on other people’s schedules and we
simply do not have enough people choosing dialysis care as a
profession.
In
my opinion, one of the best ways to increase the number of individuals
opting for home dialysis is by recognizing and valuing the time and
energy people with kidney failure dedicate to their treatment
regimen. This requires a deep understanding of the daily
challenges and commitment involved in managing home dialysis.
Rachel
Cluthe’s video, which provides a condensed but impactful
portrayal of her home hemodialysis experience, is a powerful example of
how sharing firsthand experiences can help decision makers understand
the reality of this treatment method and the commitment needed by the
patient. By highlighting individuals like Rachel, who have dedicated
extensive time and effort to do their own home dialysis, it offers
valuable insights into the true nature of this treatment. This video
showcases the dedication and resilience required to provide your own
care.
As the government and various organizations within the dialysis
community continue to advocate for home dialysis, implementing a
system to help people transition to home dialysis with greater
confidence and ease would be beneficial. This system may
include in-center self-care with the goal of eventually the person
transitioning to home treatment.
Recognizing the
tremendous effort put forth by people who diligently manage
their own dialysis treatments every day, especially during periods of
poor health, is crucial. Motivating and retaining individuals on home
dialysis is essential, given the high number of people who discontinue
this form of treatment after just a few months. Efforts to address this
issue could involve providing tangible benefits and support to
home dialysis patients, thereby acknowledging, and valuing
their dedication to self-care.
One potential approach to incentivizing home dialysis retention is to
design and establish a pilot program that offers specific
benefits or rewards aimed at recognizing and appreciating the commitment
it takes to do one’s own treatment. For instance,
waiving Medicare copayments for home dialysis patients
could be a meaningful step in demonstrating recognition and support for
their efforts. A task force should be created to work with CMS to
evaluate options.
Humans are wired to respond to rewards. When we receive a reward, our
brain releases a feel-good chemical called dopamine. Rewards motivate us
to work harder, learn new things, and strive for success.
Rewards give us a sense of achievement, validation, shows
progress, boost our self-esteem, and make us feel valued. Also,
reward systems can have an impact on patient’s family dynamics and may
help them feel less burdened and more willing to accept and support home
dialysis.
By acknowledging and valuing the energy and dedication required by
people to do their own home dialysis, we can foster a more
supportive environment that encourages people to choose and
persevere with this form of treatment. I believe this approach can help
motivate and retain people on home dialysis. Also, with the shortage of
renal care professionals, drastic changes are needed in
how we provide care to meet the needs of people requiring dialysis to
live.
My experience with both home hemo and peritoneal dialysis gave me the
ability to take control of my treatment at home, positively impacting my
overall well-being. I am grateful to have kidney transplant that is
doing well.
The goal is to empower people who have kidney failure to
choose home dialysis as their treatment option. By fostering a
deeper appreciation for the efforts of those engaged in home dialysis,
we can work towards increasing the percentage of people benefiting from
this valuable form of treatment.
I encourage you to watch Rachel’s experience of doing home hemo and
share your thoughts.
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- Source: https://homedialysis.org/news-and-research/blog/588-do-we-need-a-new-model-to-reward-people-who-do-home-dialysis