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End-of-Life Care Preferences and Needs: Perceptions of Patients with Chronic Kidney Disease

Department of Medicine, University of Alberta, Edmonton, Alberta, Canada

Correspondence: Dr. Sara Davison, 11-107 Clinical Sciences Building, Edmonton, AB T6G 2G3, Canada. Phone: 780-407-8716; Fax: 780-407-7878; E-mail: sara.davison{at}ualberta.ca

Background and objectives: Despite high mortality rates, surprisingly little research has been done to study chronic kidney disease (CKD) patients’ preferences for end-of-life care. The objective of this study was to evaluate end-of-life care preferences of CKD patients to help identify gaps between current end-of-life care practice and patients’ preferences and to help prioritize and guide future innovation in end-of-life care policy.

Design, setting, participants, & measurements: A total of 584 stage 4 and stage 5 CKD patients were surveyed as they presented to dialysis, transplantation, or predialysis clinics in a Canadian, university-based renal program between January and April 2008.

Results: Participants reported relying on the nephrology staff for extensive end-of- life care needs not currently systematically integrated into their renal care, such as pain and symptom management, advance care planning, and psychosocial and spiritual support. Participants also had poor self-reported knowledge of palliative care options and of their illness trajectory. A total of 61% of patients regretted their decision to start dialysis. More patients wanted to die at home (36.1%) or in an inpatient hospice (28.8%) compared with in a hospital (27.4%). Less than 10% of patients reported having had a discussion about end-of-life care issues with their nephrologist in the past 12 months.

Conclusions: Current end-of-life clinical practices do not meet the needs of patients with advanced CKD.

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				D. Cukor and P. L. Kimmel Education and End of Life in Chronic Kidney Disease: Disparities in Black and White Clin. J. Am. Soc. Nephrol., February 1, 2010; 5(2): 163 - 166. [Full Text] [PDF]