The Kidney Patient Advisory Council (KPAC) is a committee of the National Forum of ESRD Networks consisting of volunteer renal patients lending their voices to support the work of those interested in the quality of care offered to patients with ESRD. As such, the KPAC feels the need to address the statements attributed to Ms. Dougherty, a dialysis nurse, in a recent New York Times article and referenced in the recent Nephrology News article “Nephrology nurse’s comments about dialysis patients stirs controversy” 

The KPAC is concerned that Ms. Dougherty’s characterization may be construed to represent the true experiences of the majority of dialysis patients. The impression that dialysis patients are undeserving and unappreciative is both hurtful and harmful to the majority of patients who are struggling bravely to deal with a chronic life threatening illness.

There are several statements in this short article that could and should be responded to, but the two that we are choosing to address are:

  • “She was reacting, she said, against the sense of entitlement she saw on display at the dialysis center . . . only a small fraction of the 54 people getting dialysis at her center had regular jobs”, and
  • “When you’re getting assistance there should be hoops to jump through so that you’re paying a price for your behavior.”

While discussing this article during a recent KPAC meeting, the question arose “Is trying to stay alive an entitlement?” We feel that this simple question sums up our assessment of Ms. Dougherty’s thoughts.

We find that giving this much credence to such a small data sampling (one 54 patient unit in one limited demographic) is extremely misleading. Many dialysis patients maintain thriving careers, full time employment, part time employment and home occupations. Many are in school.

However, many dialysis patients do not achieve a state of health that can be considered normal. 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.

Given these losses and the grief and shame that accompany them, the idea that “there should be hoops to jump through” would be laughable if it wasn’t so sad.

Would more patients work if they had access to better care and a more flexible treatment schedule? That is certainly one part of the equation. Health is a factor in unemployment. 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. Many patients, however, have become devout volunteers in almost every aspect of life and, as such, provide a great service to communities and organizations trying to survive in today’s economy.

Speaking as patients, we ask that you look at us through better eyes. We have value and a lot to contribute. Health care professionals today define the value of the services they provide in patient centered terms, not clinician centered terms. It is linked to understanding the patient experience and the individual patient values in play. This means listening to patients and collaborating with them rather than demanding conformity to the professionals’ personal concept of the ideal patient. Unfortunately, this approach is lacking in Ms. Dougherty’s comments as reported by the Times.

If you think you are seeing a lack of respect, look a little deeper. Perhaps you are only seeing the fear that we experience and deal with on a daily basis.

 

Ms. Carey is the chair of the Kidney Patient Advisory Council for the Forum of ESRD Networks. She is also an ESRD patient. Mr. Forfang is the vice-chair of the Kidney Patient Advisory Council, and an ESRD patient.

Related: Nephrology needs more compassion—and less compliance