Background Capturing feedback about the quality of end-of-life care (EoLC) is challenging and historically dominated by bereavement studies. Locally we have an integrated population outcome-based accountability model for EoLC designed to improve 10 priority co-produced outcomes. Only six of these outcomes had a relevant pre-existing data source to enable programme monitoring.
Aim To design and implement a feedback system for patients approaching the end of life, aligned to priority outcomes, to inform the population-based EoLC programme.
Method A working group was created including the hospice, the integrated care system business intelligence team, and a patient feedback business consortium. Appropriate information-sharing agreements were created to support data flow. People are recruited for the survey via telephone after being identified by their registration on the Electronic Palliative Care Coordination System.
Consenting participants are sent a monthly survey by text asking them to score their experience of the sensitivity of the initial conversation about their priorities, the dignity with which they have been treated, the perception of care provision for their needs, symptom control and satisfaction with carer support. Free text comments on the best and worst of their experience are requested.
Results 187 people have been recruited so far. Half of the respondents are patients and half are carers. Response rates vary from 12–23% each month. Answers are pseudo-anonymised and passed to the hospice and then relinked to their diagnostic group and Primary Care Network registration. This data passed to the Data Services for Commissioners Regional Offices (DSCRO) and through to the Alliance EoLC dashboard.
Respondents report the following outcomes are achieved all or most of the time:
Sensitive care plan conversations: 89%
Satisfaction with carer support: 92%
The right care for their needs: 90%
Pain and symptoms managed well: 87%
Treated with dignity and respect: 98%.
Statistics from Altmetric.com
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