A presentation by Dr Bill Noble, Medical Director of Marie Curie Cancer Care, shown at the Improving End of Life Care Conference at Hallam Conference Centre, London, 15 September 2014.

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

2. 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.

3. DELIVERING HIGH QUALITY SERVICES

4. 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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5. 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.

6. 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.

7. 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.

8. 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.

9. 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.

10. 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.

11. 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

12. 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.

13. THANK YOU
FOR YOUR TIME