Last month, a ProPublica interview with a nephrology nurse who was critical of what she called dialysis patients’ “sense of entitlement” struck a nerve with our readers. Dialysis patients and nurses took to our comment section, and social media, to express their opinions.
The interview touched on the larger issues of dialysis patient employment and rehabilitation, dialysis adequacy, and compliance. The nurse, Pamela Dougherty, lamented that only a fraction of her 54 dialysis patients had jobs. Anyone familiar with dialysis knows that the issue of unemployment among dialysis patients is far more complicated than a simple sense of entitlement, or laziness
“Home Dialyzors United believes that far more patients would choose to work if they had access to better treatments, work friendly scheduling, and comprehensive rehabilitation,” HDU president Denise Eilers, BSN, RN, wrote. “Ideal treatments include home peritoneal dialysis, home hemodialysis, and nocturnal dialysis.”
“The ability to work is intimately tied to a person’s sense of self-worth, and the original intent of the Medicare End-Stage Renal Disease (ESRD) Program was to keep patients employed and productive,” Eilers wrote in a recent article for the Renal Support Network.
But many patients find it hard to maintain a job while following a dialysis center’s schedule. And the treatment itself can hinder a patient’s ability to work. ESRD patients Maggie Carey and Derek Forfang wrote an article for NephrologyNews.com that explains why some dialysis patients never return to work.
“Many dialysis patients do not achieve a state of health that can be considered normal,” wrote Carey and Forfang, who are chairs of the Kidney Patient Advisory Council for the Forum of ESRD Networks. “We operate with a more limited supply of energy and stamina and many ESRD patients have additional health issues (diabetes, heart disease, etc.) that impede our ability to meet all of life’s challenges. We suffer great losses; strength, vitality, energy, our ‘place’ in our family and our community, our jobs, careers, hobbies and recreational activities. We lose control of our time, our futures and our bodily functions.”
Many patients cannot work, but more of them could if given the chance. “How can dialysis providers help?” Mark Neumann asked in a recent NN&I article. “By accommodating patients with late-night shifts, in-center nocturnal programs, and interceding with employers. In a 2008 study by Kutner et al., the authors found that employment rate was positively associated independently with availability of a 5 p.m. or later dialysis shift, with peritoneal dialysis or home hemodialysis training, and provision of more frequent hemodialysis. In addition, patient receipt of vocational rehabilitation services was more often reported in facilities with higher employment rates.”
Eiler’s husband was an accountant when he was diagnosed with ESRD in 1980. “With Jerry working fifty or more hours a week, the flexibility of home dialysis was a perfect fit,” Eilers wrote in NN&I’s upcoming February issue. “We juggled dialysis days depending on his business travel or our social outings.”
Unemployment is a complex issue, in all segments of society. “Health is a factor in unemployment,” Carey and Forfang wrote. “So is education, job training, local employment opportunities, transportation infrastructure, ad infinitum. While home dialysis, where applicable, can help with scheduling difficulties and can improve health outcomes in some, it is not a cure all for the unemployment rate that is systemic within a community.”
Carey and Forfang are right. There is no cure-all for anything, really. Health care professionals know this better than anyone. But we can’t ignore the problem. We must work to apply remedies, create new solutions, and remain empathetic.