Public Policy and Patient Choice of Dialysis Modality

This study evaluated the effect of the Centers for Medicare and Medicaid Services (CMS) Prospective Payment System (PPS) on peritoneal dialysis (PD) utilization (1). I read this study with interest, because I truly believe that PD was a lifesaving treatment option for me, and I am always perplexed that the majority of people receiving dialysis in the United States choose hemodialysis.

During my childhood, I was on acetate hemodialysis and frequently had seizures; my BP was out of control, often running in the 200s. I was the first child to receive PD at my pediatric facility, and there were a lot of learning curves. Despite the obstacles of a brand new therapy, I regained some of the normalcies of teenage years, fluid management was better controlled, and my BP was normal through the next 9 years of my life. I did not have to rely on my tiny vascular system for an access for hemodialysis. My quality of life had improved. I only had to visit the doctor and nurse monthly. Limited visits helped me avoid being subjected to the sadness in a dialysis unit as well as illness and infection caught in medical settings.

When I was told that I had to return to hemodialysis due to my PD catheter needing to be changed, I said that I would rather die than do hemodialysis. The will to live is strong, and I eventually agreed to get an access. I was in my early twenties, I was distraught, and I did not want to give up my autonomy of care. Luckily, I was successfully transplanted soon after that ordeal.

I get angry when I hear that people who have kidney failure have not been given the option of PD. One of my younger peers was told by her doctor that she was not a candidate for PD. I insisted that she get a second opinion. After a few hematology mishaps, she found another doctor and ended up doing PD for several years until her successful kidney transplant. When I was in an outpatient setting receiving care, I told a grandmother who had just started dialysis about PD, and she knew immediately that she wanted to adopt that regimen so that she could travel and visit grandkids without a hassle.

When the CMS bundled payments for dialysis services to promote more PD, it was encouraging. I am not surprised that more people started, stayed on, and switched to PD or that there was an uptick in providers offering this treatment option after payment incentives proved favorable.

I am glad that the authors dug deep and found that there are additional barriers to patients being offered and succeeding at PD that are not payment driven (1). The study findings confirm my suspicion that doctors not trained in the PD treatment modality do not always offer patients all of their treatment options. There is a known shortage of nephrologists, and the lack of training for nephrologists in the care of PD is clearly still an issue.

I have heard from many of my peers that they were offered PD but that the doctor presented it in a negative manner as more likely to lead to infections, etc. The benefits of no needle sticks and a more liberal diet were not mentioned, and infections from hemodialysis happen as well.

I commend the authors for identifying inequities related to provider experience, patient education about modality types, lower reimbursement rates for Medicaid patients, and access to specialty care. I affirm their finding that “policies should be developed to support outreach and education on dialysis for underserved patients with known CKD … recognize CKD earlier among these patients and refer them to nephrologists before ESKD development” (1).

The following are barriers to PD that patients have expressed to me.

• Home environment not sterile enough, big enough, or appropriate for maintenance or storing

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• Anxiety and stress issues of dialysis process

• No one to help—fear of doing it alone

• Fear of serious medical incident

• Physical issues, such as inability to lift medical equipment/bags

• Weight gain/body image issues

• 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

• Feeling of isolation at home

An interesting question that the study raises is how does being on home dialysis affect a person’s ability to get a kidney transplant? I suspect that patients on home dialysis, because of their proactive involvement in their care regimen, are more likely to pursue a kidney transplant. If this turns out to be true, this would be an interesting statistic to share with patients.

In addition to increasing the number of patients on PD through payment reform, we must address the barriers listed above to incentivize patients. Are there incentives that can offset health care costs if the patient takes on their own care? Can there be payment for respite care if the patient gets tired, needs a break, gets sick, or needs assistance at home?

With the Executive Order of Advancements in Kidney Health signed by President Trump, another payment will be created to incentivize the kidney community to put people on home dialysis. The goal of 80% by 2025 is ambitious and may lead to people receiving PD even if it is not the best treatment option for them.

It is encouraging to know that Medicare’s PPS for dialysis is leading to greater use of a treatment that offers higher quality of life for many people who have kidney failure. Payment will always drive practice. Incentives and policies must lead to better provider training and support, patient education, quality of care, and selection of the best treatment option without bias.

Disclosures

Ms. Hartwell is the founder of the Renal Support Network.