A new study published in the June issue of the National Kidney Foundation's American Journal of Kidney Diseases found that many dialysis patients are in need of palliative care options that are often unavailable in the dialysis setting. The authors noted that this could explain why the number of patients with kidney failure who have decided to stop dialysis has fluctuated between 11 and 24% over the last two decades, and currently hovers at about 20% in the United States.

"That is a significant percentage of dialysis patients that we ought to be paying attention to," said study co-author Katharine Cheung, MD, of University of Vermont College of Medicine. "We often fail to realize that while dialysis can help extend life for the majority of patients, it does not restore health. It is therefore imperative that we invest resources into improving the quality of life for patients with ESRD."

Researchers examined more than 900 qualitative studies that provided insights into ESRD patients' personal feelings and arrived at five themes that many deal with on a daily basis: invasive suffering, personal vulnerability, relational responsibility, negotiating existential tensions and preparedness.

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"These results offer a snapshot of the thoughts and feelings of many patients, beyond what practitioners may see or hear on a day-to-day basis," said Kelli Collins, director of patient services for the National Kidney Foundation. "Palliative care can certainly help address the issues that arose in this study, along with other resources such as the National Kidney Foundation's Peers and Cares programs which gives patients the ability to talk with a trained professional or peer mentors about treatment options and physical and emotional stresses."

The study also notes that while there are end-of-life programs for patients who decide to stop dialysis, these programs often fail to target emotional resilience, a sense of well-being and personal value. A lack of communication also leads to poor quality of life on dialysis for many individuals.

"It appears that nephrologists are discovering that palliative care focused on improving patient quality of life is relevant to their work," said Charles Corr, an academic expert on palliative care and a member of the NKF's Donor Family Council. "They are beginning to understand that patients are struggling with issues that can't be seen in lab values or managed by adjusting dialysis sessions."

Researchers concluded that there is a general low awareness of palliative care on the provider side, most likely because it has not traditionally been taught in nephrology training programs and is sometimes equated with hospice or stopping dialysis care.

The investigation also found caregivers and nephrologists are often hesitant or uncertain about how to best support those on dialysis who face physical, psychological, social, and spiritual concerns.

"Education of nephrologists and nephrology fellows in palliative care, specifically communication skills, is key to addressing many of the themes from our article," said Dr. Cheung. "Health care policy changes could also promote this by valuing the time nephrologists spend discussing palliative care with patients and by encouraging collaborative clinics between palliative care and nephrology."