Learning from the National Care of the Dying 2014 Audit

Dr Phil McCarvillHead of Policy Marie Curie Cancer Care @MarieCuriePA

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 2012-13

• 9 hospices across the UK reach 8,000 people each year• Our services reached a total of 38,777 people in 2012-13• 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)

1. Focus on all terminal conditions.

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National Care of the Dying Audit 2014

• 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.

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-31st 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.• 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

• 21% of ‘capable’ patients were asked about their spiritual needs, and 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

Future Focus for Services

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

For the first group we need to drive up the quality of care - helped by better auditing and measuring of experiences

For the second group - need to 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.

THANK YOU

@MARIECURIEPA