Patients with chronic kidney disease (CKD) do not receive the information they wish regarding their illness progression, prognosis, or the care options available to them as medical decisions are made, according to the results of a study published in the Clinical Journal of the American Society of Nephrology.

“Communication of prognosis and discussions related to planning for future death are lacking in routine care of CKD patients,” writes Sara N. Davison, assistant professor of medicine, University of Calgary in Calgary, Alberta, Canada.

While 65% of patients in her study indicated they would prefer to die at home with comfort care or in a hospice facility, the vast majority of CKD patients in the U.S. die in acute care facilities without accessing palliative care services, notes Davison, who is also medical director of the university’s Peritoneal Dialysis Unit.

Davison measured survey responses of 584 patients with stage 4 or stage 5 CKD (mean age, 68.2 years; white race, 80.5%) presenting to dialysis, transplantation, or predialysis renal insufficiency clinics in Alberta, Canada, between January and April 2008.

KEY FINDINGS INCLUDE:

• 90.4% reported their nephrologist had not discussed prognosis with them.
• Only 38.2% of patients had completed an advance directive.
• 64.9% of patients preferred to die either at home with visits from a palliative care team (36.1%) or in an inpatient hospice (28.8%).
• 60.7% said they regretted the decision to initiate dialysis.

The majority of patients said they had chosen dialysis over conservative care because it was their physician’s wish (51.9%) or the wish of their families (13.9%). Only 34.2% reported that the decision to be treated with dialysis was their own personal choice. “This highlights the need to re-evaluate decision making around the initiation of dialysis and involving patients in discussions about prognosis and goals of care,” writes Davison, who strongly recommends that end-of-life care practices be integrated into CKD care.

Recommendations for Integrating End-of-Life Practices into Care of Patients with Kidney Disease.

• Enhance predialysis education to include; conservative options, the relevance of advance care planning, and the availability of palliative care and hospice services.
• Identify patients who would benefit from palliative care interventions.
• Routinely screen for manage pain and other symptoms. Screen for and manage distress.
• Facilitate access to specialist palliative care, including hospice.
• Incorporate palliative care into training for all nephrology fellows, emphasizing symptom management and advance planning.

**Adapted from Davison, Clinical Journal of the American Society of Nephrology

APPLICATION OF FINDINGS TO U.S. PATIENTS

“The article by Davison serves as a clarion call to the broader nephrology community to be more sensitive to the end-of-life preferences of patients with CKD and end-stage renal disease (ESRD),” according to the American authors of an editorial accompanying the report.

“Care to improve the quality of life of patients with ESRD for each day of their lives is as important as optimizing their nutritional status or dosage of dialysis,” writes Daniel Cukor, PhD, of the Department of Psychiatry and Behavioral Sciences, State University of New York, Brooklyn, and Paul L. Kimmel, MD, of the federal National Institute of Diabetes and Digestive and Kidney Disease, National Institutes of Health.

Although the Canadian patient sample does not match the ethnic diversity of the wider U.S. population, note the commentators, the study findings highlight the lack of knowledge within the professional community about the informational needs and end-of-life preferences of these patients.

“A truly amazing, perhaps surprising, yet incredibly important finding of the article…is that more than 60% of the sample evaluated by Davison ‘regretted their decision to start dialysis,” they state. Further, more than 90% of patients were found to have had no discussion of prognosis with their nephrologist. “Providing prognosis is a fundamental duty of physicians,” they assert.

The authors recommend that the renal care team identify patients in need of palliative and end-of-life care services, have the appropriate resources available, and encourage patients to seek additional help and to use referrals.

“While we labor to increase the quantity of life for our patients, we must be cognizant of its quality as well,” advise Cukor and Kimmel. “Both education of patients and families, as well as physicians and dialysis staff, will surely facilitate this goal.”

Source: “End-of-Life Care Preferences and Needs: Perceptions of Patients with Chronic Kidney Disease, “Clinical Journal of the American Society of Nephrology; February 2010; 5(2): 195-204. Davison SN; Department of Medicine, University of Alberta, Edmonton, Alberta, Canada. “Education and End of Life in Chronic Kidney Disease; Disparities in Black and White,” ibid,;pp. 163-166. Cukor D, Kimmel PL; Department of Psychiatry and Behavioral Sciences, Downstate Medical Center, State University of New York, Brooklyn; Division of Kidney Urologic and Hematologic Diseases, National Institute of Diabetes and Digestive and Kidney Diseases, National Institute of Health, Bethesda, Maryland.