Palliative care is greatly underutilised for patients dying from advanced chronic kidney disease (CKD). This study explored CKD patients’ knowledge of, and attitudes to, palliative and hospice care.Design and intervention
This was a cross-sectional interview-based survey of stage 5 CKD patients.Setting
Both dialysis patients and those managed without dialysis were assessed in a university-based renal programme in Alberta, Canada.Outcome measures
The primary outcome was validated patient knowledge of, and attitudes, towards palliative and hospice care. Secondary analyses of associations between knowledge and potential explanatory variables such as patient demographics, living circumstances, self-assigned ethnicity, socioeconomic position and sources of knowledge were explored.Results
Only 22.2% and 17.9% of 436 patients surveyed possessed a correct understanding of palliative and hospice care, respectively, and perceptions were mostly negative. Sources of knowledge of these services rarely involved healthcare professionals (3.1%–7.7%). Multivariable analysis identified that white participants were more than 12 times more likely to have accurate knowledge than non-Caucasian patients, not accounted for by socioeconomic position. Accurate knowledge was also more likely among patients who had personal experience with palliative care, or obtained their knowledge firsthand from family and friends. After palliative and hospice care were described, the vast majority of patients felt these services were valuable and should be offered to patients with advanced CKD (87.8% and 89.7%, respectively).Conclusions
Based on study findings, CKD patient and family education about the benefits of palliative and hospice services is likely important in optimal use of these services.