Learning from the National Care of the Dying 2014 Audit Dr Bill Noble Medical Director, Marie Curie Cancer Care

MARIE CURIE Major UK end of life charity Major service provider – Network of 2000 Nurses caring for people in the last few hours and days of life – 1.3 million hours of nursing in hospices across the UK reach 8,000 people each year Our services reached a total of 38,777 people in Major funder of academic and health service research with an Open Access research policy Working to influence policy and practice through our policy and public affairs work.

DELIVERING HIGH QUALITY SERVICES

COMMITMENT TO RESEARCH 1.Increasing research budget - £3.4 million – rising to £6.8 million over the next five years 2.Three dedicated research centres: Marie Curie Palliative Care Research Centre, Cardiff Marie Curie Palliative Care Institute Liverpool Marie Curie Palliative Care Research Unit, London, University College London (UCL) 3.Focus on all terminal conditions. 4

National Care of the Dying Audit The National Care of the Dying Audit for Hospitals Carried out by the Royal College of Physicians, with the Marie Curie Palliative Care Institute Liverpool Funded by Marie Curie and Public Health England.Marie Curie

National Care of the Dying Audit Draws on three sets of data: 1.Individual patient records (6580 people who died in 149 hospitals in England – 1st-31 st May 2013) 2.An assessment of organisational readiness to deliver palliative and end of life care 3.Views of 858 bereaved relatives.

Organisation of Care Only 21% of sites had access to face-to-face palliative care services, seven days per week Most (73%) provided face-to-face services on weekdays only Mandatory training in care of the dying was only required for doctors in 19% of trusts and for nurses in 28% 2% provided 24/7 face to face palliative care 82% of Trusts had provided some form of training in care of the dying in the previous year; 18% had not provided any. Only 47% of Trusts routinely capture the views of bereaved relatives or carers.

Findings on the quality of care (1) 87% recognition of patients being in the last days of life, but told less than half (46%) of patients capable of discussing this. Communication with family/carers about the imminent death of a relative/friend occurred in 93% of cases (average of 31 hours before the individual died). Most patients (63-81%) had medication prescribed 'as required' for the five key symptoms common at the end of life - pain, agitation, noisy breathing, difficulty in breathing, and nausea and vomiting. 59% of patients were clinically assessed to see if they needed artificial hydration, but discussions recorded with 17% of ‘capable’ patients and 36% of relatives.

Findings on the quality of care (2) Artificial hydration was in place for 29% of patients at the time of death. 45% of patients were clinically assessed to see if they needed artificial nutrition, but discussions only recorded with 17% of ‘capable’ patients and 29% of relatives. Artificial nutrition was in place for 7% of patients at the time of death. Only 21% of ‘capable’ patients were asked about their spiritual needs, and only 25% of relatives/carers asked about their own needs. Most patients - 87%, were assessed five or more times in the final 24 hours of life, in line with national guidance.

Findings from bereaved relatives survey 76% reported being very or fairly involved in decisions about care and treatment of their family member 24% did not feel they were involved in decisions at all. 39% of bereaved relatives reported being involved in discussions about artificial hydration in the last 2 days of life. 63% reported that the overall level of emotional support given was good or excellent. 37% thought it fair or poor. Overall, 76% felt adequately supported during the patient's last 2 days of life; 24% did not. Based on their experience, 68% were either likely or extremely likely to recommend their Trust to family and friends. 8% were extremely unlikely to do so.

Key Issues Highlighted Lack of access to face to face palliative care Lack of 24/7 support Poor communication with individuals and their families Even it was recognised that someone needed artificial hydration/nutrition, there is too often no communication about this

Future Focus 1.We need to focus on two groups of people: – Those who clinically need to be in hospital – Those who could and want to be elsewhere 2. For the first group we need to drive up the quality of care - helped by better auditing and measuring of experiences 3. Improve interventions which prevent people who do not need/want to be there from ending up in hospital and getting them out when they end up there.

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