As the health care community looks to home hemodialysis to improve the quality of life and overall management of patients with kidney diseases, all work should start by centering patient experiences and realities. I was diagnosed with kidney failure at the age of 2 in 1968 and luckily fell into the care of pioneer pediatric nephrologist Richard Fine, MD, who saved my life more than once with his innovative spirit. I was the first child to experience peritoneal dialysis in California, and I successfully managed my own home dialysis for 10 years. I have since founded the Renal Support Network (RSN) to empower patients with kidney diseases to become proactive in their care and hopeful about their future. After 13 years of dialysis and now living with my fourth kidney transplant, embracing the right treatment option has been key to my survival.
RSN consistently promotes home dialysis on its website through interviews and podcasts with health care professionals, nephrologists, and patients who are succeeding in this mode of care. The organization's educational materials and support groups start by laying a foundation of realistic assessments and expectations for the full range of treatments, from transplant to home hemodialysis.
The goal laid out by the Centers for Medicare & Medicaid Services (CMS) in the End-Stage Renal Disease (ESRD) Treatment Choices (ETC) payment model is to have 80% of new ESRD beneficiaries dialyze at home or have a transplant by 2025. This is a huge hurdle, as less than 15% of dialysis patients are currently on home dialysis. Patients need to overcome several barriers to be approved for home dialysis, and they should not be approved if they are not prepared to succeed. I have found it very valuable to educate them about the treatment details and help them to gain insights from other patients who are managing well on home hemodialysis and to interact with peers to build confidence so they can manage their care and thrive.
Barriers to home dialysis
Some common barriers to home hemodialysis include lack of space in the home and relational/family assistance, trepidation about self-administering, and resistance to having medical supplies in the home. There are more barriers that arise after patients are at home with equipment and a schedule, such as fear of the unknown, feeling unwell and overwhelmed, and having a low energy level.
Often, people crash into dialysis and do not feel well. It can take time to adjust and feel better as nephrologists help patients stabilize and get their numbers back into an acceptable range. These experiences are all very real, and transitioning patients into managing their own life-saving treatment quickly may prove to be difficult. It is known that depression is very high when one's kidneys fail, and one needs to rely on a machine to live. I often found it hard to self-manage when I was depressed or ill, and during those times, it helped to have a caregiver around to help me.
At RSN, we do not want patients to be placed on home dialysis to check off a box or to be rushed into home dialysis if they just minimally meet the requirements but are not fully committed to their own care. Patients can then end up failing on the treatment. This is not in the spirit of this initiative. Starting and successfully retaining people on home dialysis should be the goal.
In the September 2021 issue of Kidney News, Innovate Kidney Care suggested changes to CMS Conditions for Coverage and related guidance to lower costs of care and increase adoption of home hemodialysis (1).
I suggest regulations be changed to allow for a paid caregiver or for respite care when needed. This will increase home dialysis numbers. Also, because the bundled payment includes funds for staff, RSN requests a pilot to see if incentivizing patients with a monthly fee or some financial means (e.g., to reduce or waive the Medicare fee) can increase their adoption of home dialysis. Motivating patients with payments will allow them extra funds to get the help or space they need to be successful with home dialysis. A bill, the “Improving Access to Home Dialysis Act,” which has been introduced in the US House of Representatives by Reps. Bobby L. Rush (D-IL) and Jason Smith (R-MO) and would provide reimbursements through Medicare, is a step in the right direction.
Home dialysis training and support should be expanded and delivered in a variety of health care settings. If we want the overwhelming majority of new patients with ESRD to receive dialysis at home or via in-center self-care by 2025, then CMS regulations must incentivize service providers to address the physical, social/familial, economic, psychological, and situational barriers to care; provide real incentives for those modalities considered optimal; and increase access to home health care worker visits and/or telehealth.
The following are some of the barriers I have witnessed among my peers regarding home hemodialysis:
Home environment not sterile enough, large enough, or appropriate for maintenance or storing items
Anxiety and stress issues of the dialysis process
Fear of self-cannulation
Inadequate home wiring or plumbing for use of machine
Family not trustworthy; worries about damaging or misplacing equipment
Cost of missing work, for either the patient or caregiver, for training
No one to help; fear of doing it alone
Lack of family support or fear of family response to having the illness in the home
Fear of a serious medical incident
Physical issues, such as the inability to lift medical equipment, move supplies, and hang bags
Fear of robbery because needles and medical supplies are in the home
Fear of burnout or guilt about the time and energy caregivers provide
Unstable health or cognitive issues
Homelessness or unstable home situation
Plan of care is to be transplanted, and catheter placed in abdomen is not a medical recommendation by transplant team.
Lack of self-confidence/self-discipline in keeping to a treatment regimen
Insecurity about learning the procedures and executing them properly
Feeling isolated at home vs. the socialization of a dialysis facility, which reduces anxiety
Many of these obstacles can be overcome. I have recorded success stories and posted them online to encourage our patient community. Education and preparation are critical, and these require personal interaction and support.
When home hemodialysis is still difficult to manage, I recommend an intermediate option: Self-care in-center dialysis could provide many of the advantages of home-based dialysis and remove many of the barriers that prevent patients from choosing to undertake dialysis at home. Self-care in-center dialysis is a real step to help people get more comfortable with caring for themselves, and every avenue should be explored to incentivize this treatment option as well.
Home hemodialysis is a focus now for many reasons. Studies of patients managing home dialysis have shown them to be generally healthier, needing fewer mediations, and requiring much less frequent hospitalization. I have seen that successful home hemodialysis helps people living with kidney diseases to live the life they were meant to live. We all need to work to make this happen.
Campaign aims to expand home dialysis. Kidney News September 2021; 13:21. https://www.asn-online.org/publications/kidneynews/archives/2021/KN_2021_09_sep.pdf
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