Symptom burden, quality of life, advance care planning and the potential value of palliative care in severely ill haemodialysis patients

Background. There has been little research on the potential value of palliative care for dialysis patients. In this pilot study, we sought (i) to identify symptom burden, health-related quality of life (HRQoL) and advance directives in extremely ill haemodialysis patients to determine their suitability for palliative care and (ii) to determine the acceptability of palliative care to patients and nephrologists. Methods. Nineteen haemodialysis patients with modified Charlson co-morbidity scores of greater than or equal to8 were recruited. Each completed surveys to assess symptom burden, HRQoL and prior advance care planning. Palliative care specialists then visited patients twice and generated recommendations. Patients again completed the surveys, and dialysis charts were reviewed to assess nephrologists (i) compliance with recommendations and (ii) documentation of symptoms reported by patients on the symptom assessment survey. Patients and nephrologists then completed surveys assessing their satisfaction with palliative care. Results. Patients reported 10.5 symptoms, 40% of which were noted by nephrologists in patients' charts. HRQoL was significantly impaired. Thirty-two percent of patients had living wills. No differences were observed in symptoms, HRQoL or number of patients establishing advance directives as a result of the intervention. Sixty-eight percent of patients and 76% of nephrologists rated the intervention worthwhile. Conclusions. Extremely ill dialysis patients have marked symptom burden, considerably impaired HRQoL and frequently lack advance directives, making them appropriate candidates for palliative care. Patients and nephrologists perceive palliative care favourably despite its lack of effect in this study. A more sustained palliative care intervention with a larger sample size should be attempted to determine its effect on the care of this population.