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IMPLEMENTATION OF A SUPPORTIVE CARE REGISTER IMPROVES END OF
LIFE CARE FOR PATIENTS WITH ADVANCED CHRONIC KIDNEY DISEASE
Burton, J1, Clipsham, L2, Cooke, C2, Warwick, G1
1
John Walls Renal Unit, University Hospitals of Leicester NHS Trust, 2 Palliative Care
Services, University Hospitals of Leicester NHS Trust
INTRODUCTION: The importance of end of life care for those with advanced chronic kidney
disease (CKD) was acknowledged in both the National Service Framework for Renal Services
(NSF) Part 2, published in February 2005 and ‘The End of Life Care in Advanced Kidney
Disease – A Framework for Implementation’ published in June 2009. The stated aim was that
people with established kidney failure should ‘receive timely evaluation of their prognosis,
information about the choices available to them, and for those near the end of life a jointly
agreed palliative care plan, built around their individual needs and preferences’. Despite this, it
is still widely acknowledged that current end of life clinical practices are not meeting the needs
of patients with advanced CKD.
AIM: To evaluate the impact of a ‘Supportive Care Register’ on end of life care for patients
with advanced CKD
METHODS: A baseline retrospective audit of patients with ESRD who died in the 6-month
period of 1st June to 31st November 2009 was performed using standards based on the
recommendations of the NSF (Part2) and the NHS Kidney Care report. All patients on the
PROTON database from Leicestershire and Northamptonshire with a recorded eGFR of
<15mLs/min/1.73m2 at time of death were included (n=50). In addition to standard
demographic and medical information, specific data were collected about: end of life care
planning and patients’ preferred place of death; multi-professional management including
palliative care input and re-discussion of life goals in the event of a medical crisis.
A supportive care register was then implemented and widely publicised for use from December
2010. A re-audit was performed on all patients with ESRD who died in the 6 months from 1st
July to 31st December 2011 (n=41).
RESULTS: Following the implementation of the supportive care register, there was a 25%
increase in the number of patients with a documented discussion about end of life care planning
(20% in 2009 vs. 45% in 2011). Discussion and documentation of patients’ preferred place of
death increased by 14.5% from just 8% in 2009 to 22.5% in 2011. All patients at both time
points expressed a preference to die outside of hospital and 100% of patients achieved that goal
but with a 10.5% increase in those patients discharged from hospital on an integrated care
pathway in 2011. Although all patients were seen by at least 3 members of the multiprofessional team, after the implementation of the register there was a significant increase in
referrals to, and input from palliative care services (4 consultations in 2009 vs. 27 in 2011). In
2009, 10% of patients had a documented revision of their management plans vs. 27.5% in 2011
although this was often still precipitated by an acute admission.
CONCLUSIONS: The implementation of a supportive care register significantly improved the
provision of end of life care services for patients with advanced CKD. However, there is still a
need for wider inclusion of patients and more routine discussion of advance care planning.