Do We Need a New Model to Reward People Who Do Home Dialysis?
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.
Comments
Sheila Coles
Mar 13, 2024 6:52 PM
Can anyone please identify with this and tell me how you cope? Many thanks. Sheila.
Michael Acton
Mar 13, 2024 10:09 PM
Michael Acton
Mar 10, 2024 3:02 AM
Jeffrey Stumpe
Mar 22, 2024 12:36 AM
Treatments conducted in the safety and comfort of your own residence. In 2020 Medicare reimbursements for dialysis actually went down for the first time in history (coverage since 1972) owed to the deaths of In Center hemodialysis patients from Covid 19 during 2020.
Controlling all the parameters of HHD to prevent the mortality risk increases marked by the chronic hospitalizations of patients on In Center "Bazooka Dialysis". Medicare reimbursements for dialysis are a pittance compared to the hospitalization costs of the nearly 85% of patients on In Center hemodialysis. Dialysis patients represent some 2% of all those covered by Medicare yet that 2% is responsible for 7% of all Medicare costs.
My care partner/spouse and I conducted over 2000 HHD treatments over 10-1/2 years with 0 hospitalizations and 0 ER visits. HHD permitted me to continue to work full time for 5-1/2 years during my prime earning years boosting my net worth by 30%. I collected generous SSDI benefits for 10 months while working full time under the SSA's "9 Month Trial Work Period", becoming eligible to receive benefits after 5 months of severance from my prior employer. I left work in late 2017 on STD at 60% of my current wage for 13 weeks, while collecting SSDI immediately given my prior benefits from 2016 and 2017. I collected LTD for 48 months at 60% of my last 12 months of wages and SSDI for a total of 31 months up to my FRA of 66 before ceasing those benefits to earn delayed claiming benefits until age 70. I thrived on HHD. Had I elected In Center hemodialysis as my dialysis modality in 2012, I wouldn't be writing this comment.