by Gary Peterson
In my opinion, this paper from The Netherlands in BMC Nephrology addresses the most essential component of dialysis care that is being largely ignored in the U.S. today — the positive effect of employment. An excerpt:
"Because of the small number of patients (in the study) aged 18-64 years, we could not investigate the relationships between patients' perceptions of their illness and current treatment on one hand and employment on the other hand more thoroughly. These findings, however, do show some trends: employed patients perceive their treatment as less disruptive and their illness as better controllable by self care and medical care than unemployed patients."
The paper speaks of how employment instills a sense of empowerment, self-esteem, and autonomy in their working-age patients. It speaks of the need for caregivers to address the negative and maladaptive beliefs of pre-dialysis patients regarding employment. It speaks of the need to stimulate positive and realistic beliefs, as well as to challenge negative beliefs. The paper calls for patients with severe CKD to be educated by a multi-professional team consisting of nephrologists, nurses, employment experts, psychologists, and social workers.
The authors also reinforce an observance that patient advocates have shared with me, which is that once dialysis patients stop working, it is almost impossible to get them working again.
While I read the article, I found myself continually questioning why nephrologists and dialysis providers are not targeting employment for working-age patients. Is this not a basic human need that is also essential for greater health and long-term survival? What dialysis professional would not insist on employment as a treatment goal for themselves?
Frankly, it raises basic questions as to whether the problem in the US is not with the patients — as is often stated privately — but instead with the negative and maladaptive beliefs and policies of both the nephrology establishment and the largest dialysis providers. It is hard to accept providers' claims that they deliver patient-centered care when they neither have in-house employment experts nor target employment and/or rehabilitation as a treatment goal.
Instead of waiting for the nephrologists and providers to change, dialysis patient groups should be insisting that employment is an essential treatment goal for long-term survival and a basic human right for all working-age patients.