Background The aim of the Renal Supportive Care Register (RSCR) at Birmingham Heartlands Hospital is to identify patients who are requiring dialysis with a prognosis of less than 12 months. This project aims to explore whether patients were identified appropriately on the RSCR and if advance care planning took place.
Methods We reviewed the inpatient and outpatient consultations of patients who died whilst listed on the RSCR between 2016 and 2018. We recorded the dates when patients were added to the RSCR and when they died. We reviewed conversations around dialysis withdrawal and events at the end of life.
Results There were 80 deaths on the RSCR in the 3 year period. 88% of patients were listed on the RSCR within 12 months of death; 69% of these were listed on the day they died. 38% of patients were offered a conversation on withdrawal of dialysis; 70% of these then opted to withdraw. Cited reasons for continuing dialysis were families’ refusal to accept palliation and denial. 87% had valid Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) forms. 2 patients who did not have DNACPR forms received CPR (without return of spontaneous circulation) on the day of their death in hospital. Preferred place of death (PPD) was established in 20% of patients. 21% were referred to the hospital palliative care team, often to help achieve PPD. 15% on the RSCR were known to their local community palliative care teams.
Conclusions Our data suggests that the deterioration and deaths of these patients may have been unexpected or unrecognised. Our work particularly suggests that patients‘ families put up barriers during conversations around withdrawal of dialysis. PPD was rarely discussed in our patient cohort. The majority of our patients died in the hospital setting, often without being known to community palliative care.
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