Background The End of Life Care in Advanced Kidney Disease Framework suggests identifying patients approaching the end of life using a register to facilitate care planning, improve communication, co-ordinate service delivery and provide bereavement support. We aimed to survey the use of these registers in UK Renal units.
Methods Anonymous structured questionnaires were distributed electronically to UK Renal units.
Results 59% of respondents formally identified patients using a register. The commonest methods used to identify these patients included worsening symptoms despite optimal management (100%), deteriorating performance status, increasing care needs (95%) and unplanned hospital admissions (80%). Registers triggered interventions including discussions about resuscitation status (100% of units using registers compared with 50% not using registers), advance care planning (95% of units using registers compared with 43% not using registers), communication with GP (90% of units using registers compared with 50% not using registers) and referral to palliative care services (80% of units using registers compared with 21% not using registers). 88% of respondents discussed these patients with palliative care teams and 15% invite palliative care professionals to their MDT meetings. 21% use a structured pathway to withdraw dialysis. Nearly half of units surveyed did not use a formal bereavement pathway for the deceased’s next of kin.
Conclusions This survey suggests that many UK Renal units use a register to formally identify dialysis patients approaching the end of life and use similar methods to identify these patients. Our results also suggest that these registers are effective in facilitating advance care planning, improving communication and coordinating care. However, the results suggest significant variation between units in follow up and provision of bereavement support.
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