End-of-life care preferences and needs: perceptions of patients with chronic kidney disease

Clin J Am Soc Nephrol. 2010 Feb;5(2):195-204. doi: 10.2215/CJN.05960809. Epub 2010 Jan 14.

Abstract

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.

MeSH terms

  • Advance Care Planning
  • Aged
  • Aged, 80 and over
  • Analgesia
  • Canada / epidemiology
  • Delivery of Health Care, Integrated
  • Female
  • Health Care Surveys
  • Health Knowledge, Attitudes, Practice*
  • Hospices
  • Humans
  • Kidney Failure, Chronic / mortality
  • Kidney Failure, Chronic / psychology
  • Kidney Failure, Chronic / therapy*
  • Male
  • Middle Aged
  • Palliative Care* / psychology
  • Patient Care Team
  • Patient Education as Topic
  • Patient Preference*
  • Perception*
  • Physician-Patient Relations
  • Practice Patterns, Physicians'
  • Psychometrics
  • Social Support
  • Spirituality
  • Surveys and Questionnaires
  • Terminal Care* / psychology