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New York, NY (June 1, 2014) – Patients on dialysis experience a bewildering and often unspoken struggle between life and death that should be addressed with palliative care therapies, according to an original investigation published in the June issue of the National Kidney Foundation's American Journal of Kidney Diseases.
Palliative care is patient- and family-centered care designed to prevent and alleviate suffering and other physical, psychological, social or spiritual issues in order to maximize quality of life for patients and their family members.
The study found that many patients are in need of palliative care options that are often unavailable in the dialysis setting. That could explain why the number of patients with kidney failure, or end stage renal disease (ESRD), who have decided to stop dialysis has fluctuated between 11 and 24 percent over the last two decades, and currently hovers at about 20 percent in the U.S.
"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 over 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.
"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 (NKF). "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 long-time 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."
"Building palliative care therapies and consultations into the ESRD practice early should be a priority," said Corr. "This research shows that while we have a system in place to refuse medical interventions like dialysis, the palliative system is not in place that will allow patients to competently and comfortably make those decisions and live them out."
Kidney Disease Facts from the National Kidney Foundation
The National Kidney Foundation (NKF) is the leading organization in the U.S. dedicated to the awareness, prevention and treatment of kidney disease for hundreds of thousands of healthcare professionals, millions of patients and their families, and tens of millions of Americans at risk. For more information, visit www.kidney.org.