title: End-of-life care preferences and needs: perceptions of patients with chronic kidney disease.
abstract: OBJECTIVE
  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.
  
  
  METHODS
  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.
authors.affiliation: Department of Medicine, University of Alberta, Alberta, Canada. sara.davison@ualberta.ca
authors.forename: Sara N
authors.initials: SN
authors.lastname: Davison
mesh_terms: D032722:Advance Care Planning; D000368:Aged; D000369:Aged, 80 and over; D000698:Analgesia; D002170:Canada / Q000453:epidemiology; D019033:Delivery of Health Care, Integrated; D005260:Female; D019538:Health Care Surveys; D007722:Health Knowledge, Attitudes, Practice; D006738:Hospices; D006801:Humans; D007676:Kidney Failure, Chronic / Q000401:mortality / Q000523:psychology / Q000628:therapy*; D008297:Male; D008875:Middle Aged; D010166:Palliative Care / Q000523:psychology; D010348:Patient Care Team; D010353:Patient Education as Topic; D057240:Patient Preference; D010465:Perception; D010817:Physician-Patient Relations; D010818:Practice Patterns, Physicians'; D011594:Psychometrics; D012944:Social Support; D029181:Spirituality; D011795:Surveys and Questionnaires; D013727:Terminal Care / Q000523:psychology