The National Audit of Care at the End of Life (NACEL) is commissioned by the Healthcare Quality Improvement Partnership (HQIP) as part of the National Clinical Audit and Patient Outcomes Programme (NCAPOP). It was carried out by the NHS Benchmarking Network in collaboration with The Patients Association and aims to assess the quality of care that patients receiving end of life care and their families experience, as well as staff perceptions of their confidence and ability to deliver end of life care.
The audit included:
- an Organisational Level Audit covering Trust/Health Board and hospital/submission level questions for 2020/21.
- a Case Note Review which reviewed 20 consecutive deaths between 12th April 2021 and 25th April 2021 and 20 consecutive deaths between 1st May 2021 and 14th May 2021 for acute providers and up to 40 consecutive deaths in April and May 2021 for community providers.
- a Quality Survey completed online, or by telephone, by the bereaved person.
- a Staff Reported Measure, completed online.
Recognising the possibility of imminent death
- The possibility that the patient may die within the next few hours/days was recognised in 87% of cases audited, compared to 88% in 2019.
- The median time from recognition of dying to death was recorded as 44 hours (41 hours in 2019).
Communication with the dying person
- Results on all key metrics regarding the recording of conversations with the dying person remain similar to 2019, pre-pandemic levels
- However, from the Quality Survey, the proportion strongly disagreeing or disagreeing with the statement ‘staff communicated sensitively with the dying person’ increased from 7% (2019) to 11% (2021).
Communication with families and others
- There was little change in 2021 when compared to 2019, with continued high compliance on recording of conversations about the possibility that the person might die and on the individualised plan of care.
- As in 2019, discussions on hydration and nutrition with families and others were documented, or a reason why not recorded, in only around half of cases.
Involvement in decision making
- Findings from the Case Note Review in 2021 suggest continued strong compliance on involvement in decision making, with similar results to those reported when this theme was last tested in 2018. However, from the Quality Survey, in 2021, 23% of people felt they would like to be more involved in the person’s care compared to 19% in 2019.
Individualised plan of care
- Third round findings from the Case Note Review showed similar results for the existence of an individualised plan of care, 73% of cases compared to 71% in 2019, suggesting this is an ongoing area for improvement.
- Documented evidence of an assessment of wider needs such as emotional/psychological, spiritual/religious/cultural and social/practical shows a reduction since 2019, which may be a result of continuing pressures of the Covid-19 pandemic on services during 2021.
Needs of families and others
- The needs of the family were identified as an improvement area in both round one and round two of the audit. Comparison with 2019 findings suggests performance has deteriorated, which may reflect the impact of the pandemic on the ability of visitors to access wards and the capacity of staff to assess and address the needs of families and others.
Families’ and others’ experience of care
- The overall rating of care and support to the person who died, and the overall rating of care and support provided to families and others, are lower than in 2019.
- Governance was last measured in 2018 and Trusts/Health Boards (HB) continue to show high compliance with the existence of key policies related to care at the end of life in 2021.
Workforce/specialist palliative care
- The results show an improvement in access to specialist palliative care, in particular, face-to-face access 8 hours a day, 7 days a week was available in 60% of hospitals/sites compared to 36% in 2019. The increased provision may reflect a response to the pandemic and it is not yet clear whether the change will be permanent.
- Staff completing the survey expressed confidence in recognition of dying, communication, responding to the needs of the dying person and those important to them, involving people in decision making, accessing specialist palliative care and managing pain and physical symptoms, with less than 6% stating they strongly disagreed or disagreed with positive statements of confidence in these areas.
- Training was identified as a potential area for improvement with only 49% of respondents stating they had completed training specific to end of life care within the last three years. Although staff felt support was available from the specialist palliative care team, only 66% felt managerial support was available to help provide care at the end of life.
Care and culture
- Although 83% felt able to raise a concern about end of life care, this should be closer to 100%. Only 80% answered positively that they felt they work in a culture the prioritises care, compassion, respect and dignity, which is also a concern.
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