national audit of care at the end of life · end of life (nacel) in northern ireland. the one...

National Audit of Care

at the End of LifeSecond round of the audit (2019/20)

report Northern Ireland

© 2020 NHS Benchmarking Network (NHSBN)

Citation for this document: NHS Benchmarking NetworkNational Audit of Care at the End of Life: Second round of audit report

Northern Ireland2020

The National Audit of Care at the End of Life (NACEL) is commissioned in England and Wales by the Healthcare Quality Improvement Partnership (HQIP) as part of the National Clinical Audit and Patient Outcomes Programme (NCAPOP). HQIP is led by a consortium of the Academy of Medical Royal Colleges, the Royal College of Nursing and National Voices. Its aim is to promote quality improvement in patient outcomes, and in particular, to increase the impact that clinical audit, outcome review programmes and registries have on healthcare quality in England and Wales. HQIP holds the contract to commission, manage and develop NCAPOP, comprising around 40 projects covering care provided to a wide range of people with a wide range of medical, surgical and mental health problems. HQIP commissions the NHS Benchmarking Network (NHSBN) to deliver the National Audit of Care at the End of Life (NACEL) across England and Wales. The Public Health Agency (PHA) in Northern Ireland commissions NACEL from the NHSBN to deliver the audit in Northern Ireland.

This report was prepared by the NHSBN with support from the Northern Ireland Palliative Care in Partnership Programme. The content of this report is advised and approved by the Northern Ireland Public Health Agency.

The valuable guidance of the NACEL Steering Group and Advisory Groups (Appendix 7) was very much appreciated. Particular thanks go to Professor Mike Bennett for his technical advice, and to Dr Elizabeth Teale, both from the University of Leeds, for advising on validation of the Staff Reported Measure, for rollout in round three of the audit. The Patients Association are valuable partners of NACEL, and are thanked once again for their help in delivering advice from the patient’s perspective, and in assisting with the Quality Survey. Thanks also goes to representatives from the Northern Ireland Patient Client Council and the 10,000 More Voices initiative who have assisted with the process for the administration of the NACEL Quality Survey in Northern Ireland.

Thanks go to staff from NHS Trusts (in England and Northern Ireland) and Health Boards (in Wales), who assisted the NHSBN with piloting various aspects of NACEL.

The pilot sites for the round two Case Note Review pilot were:-

• Cardiff and Vale University Health Board• Cwm Taf Morgannwg University Health Board• King’s College Hospital NHS Foundation Trust• Norfolk Community Health and Care NHS Trust• Western Health and Social Care Trust

The pilot sites who assisted with the Staff Reported Measure (SRM) were:-

• County Durham and Darlington NHS Foundation Trust• Midlands Partnership NHS Foundation Trust• North West Anglia NHS Foundation Trust• Oxford Health NHS Foundation Trust• Oxford University Hospitals NHS Foundation Trust• University Hospitals of North Midlands• Wirral University Teaching Hospitals NHS Foundation Trust

Acknowledgements

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Thank you also to the stakeholders who gave their time to provide input to the scoping of the rollout of NACEL to community settings (NACEL Community Feasibility Report) during the summer of 2019.

We would also like to thank members of hospital staff across Northern Ireland who assisted with the administration of the audit and completed the Organisational Level Audit and Case Note Review elements for the second round of NACEL.

This report presents data from the 2019/20 financial year, it is important to note that the audit and analysis took place before the COVID-19 pandemic and therefore does not reflect any data recorded during this time. It is acknowledged that future rounds of the audit will need to review ways in which end of life services were delivered during the pandemic and capture additional data in line with guidance published at this time.

Acknowledgements

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Table of contents

Foreword………………………………………………………………………………………………………………………………….

Executive summary…………………………………………………………………………………………………………………..

Recommendations……………………………………………………………………………………………………………………

1. Audit background and development1.1 Policy context in Northern Ireland…………………………………………………………………………..1.2 Audit background and governance………………………………………………………………………...1.3 Audit objectives………………………………………………………………………………………………….....1.4 Auditstandards……………………………………………………………………………………………………….1.5 Audit structure and scope……………………………………………………………………………………...1.6 Development of audit tools…………………………………………………………………………………...

2. Methodology2.1 Eligibility, recruitment and registration………………………………………………………………..….2.2 Data collection…………………………………………………………………………………………………….....2.3 Data validation and cleansing………………………………………………………………………………...2.4 Data confidentiality and security………………………………………………………………………….….2.5 Reliability analysis………………………………………………………………………………………………….2.6 Management of Outliers Policy………………………………………………………………………..….…2.7 Cause for Concern Policy………………………………………………………………………………………..

3. Participation…………………………………………………………………………………………………………………..…….

4. How the findings are presented4.1 Regional results……………………………………………………………………………………..……………….4.2 Key themes and summaryscores……………………………………………………………….…………..4.3 Indicators in this report………………………………………………………………………………………….4.4 Second round of NACEL NI outputs…………………………………………………………………….…….

5. Results5.1 Recognising the possibility of imminent death………………………………………………………..5.2 Communication with the dying person…………………………………………………………………..5.3 Communication with families and others……………………………………………………………….5.4 Individualised plan of care……………………………………………………………………………………..5.5 Workforce/specialist palliative care………………………………………………………………………..

6. Additional requirements in round two of NACEL…………………………………………………………………..

7. Third round of NACEL…………………………………………………………………………………………………….……..

8. Glossary…………………………………………………………………………………………………………………………..…..

9. References……………………………………………………………………………………………………………………….…..

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71016

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Appendices

This report also has a number of appendices which should be read in conjunction with these findings.

Appendix 1: Hospital score table …………………………………………………………………………………….….…

Appendix 2: Method for scoring………………………………………………………………………………………………

Appendix 3: Patient demographics……………………………………………………………………………………….…

Appendix 4: Characteristics of deaths in hospitals………………………………………………………………..…

Appendix 5: Audit Summary……………………………………………………………………………………………….……

Appendix 6: Indicators included in the report……………………………………………………………………….…

Appendix 7: Steering Group, Advisory Group and Audit Team………………………….……………………..

Appendix 8: Audit participation………………………………………………………………………………………….……

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Foreword

This report presents the findings from the second round of the National Audit of Care at the End of Life (NACEL) in Northern Ireland.

The one certainty in life is that everybody will die. Wherever that person dies, he/she has the right to have the best possible death, according to their needs and wishes. National policy guidance throughout the UK, and reinforced in Northern Ireland, rightly reflects the high priority that we as a society give to good end of life care. Given that over half of the deaths that occur every year in the UK occur in a hospital setting, the focus of the National Audit of Care at the End of Life (NACEL), is on end of life care in an inpatient setting. NACEL shines a spotlight on the last admission to hospital prior to death and highlights whether hospital staff in Northern Ireland are delivering against the quality standards and statements which are universally accepted as good practice.

The public have had heightened anxiety over the past few years, as the Liverpool Care Pathway has been phased out, and priorities for care at the end of life have been refocused. One of the key findings from NACEL is that the components of the Liverpool Care Pathway are not in use in any hospital in Northern Ireland. Instead, staff are working towards delivering the best quality end of life care they can, using NICE guidance (NG31) as their guiding principles. NACEL gives some reassurance that the focus on the priorities for care is occurring and that the NHS is striving towards improving these standards for end of life care year on year.

Northern Ireland has participated for the second time in NACEL. For this second round, the Northern Ireland Health and Social Care Trusts (HSCTs) have participated both in the Organisational Level Audit and for the first time, in the Case Note Review element of NACEL. Northern Ireland opted to leave participation in the NACEL Quality Survey (the survey of bereaved carers) until round three of the audit, and much planning has been undertaken this past year to ensure optimal participation in this important aspect of the audit.

The NACEL Steering Group and Advisory Group have been proactive in reviewing and building upon the learning from the findings from round one of NACEL. The NACEL Steering Group has actively listened to the feedback from audit participants and subsequently have made changes to NACEL for round two. Most often cited were concerns from audit participants, who have noted data burden, capacity and resource required as operational issues trusts are facing when undertaking the audit. Consequently, for round two, the number of Case Note Reviews to be completed was reviewed and the Case Note Review itself was slimmed down, to 25% of its original size. This has been undertaken carefully to ensure the integrity and robustness of the round two findings have not been compromised. The round two audit also focused on those areas requiring the greatest attention in round two: the themes of ‘recognising the possibility of imminent death’ and ‘individualised plan of care’. Themes reporting higher compliance in round one were removed from the round two audit, but will be revisited in round three, to check progress. We are pleased to report that all five HSCTs in Northern Ireland participated in NACEL round two.

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Foreword

The main messages from NACEL Northern Ireland in round two are as follows:-

1. There are a high proportion of deaths in Northern Ireland which are recognised (91%) (see page 20 for further information on the categories of deaths audited in NACEL). Early recognition of imminent death underpins all other aspects of end of life delivery and is emphasised in NICE guideline NG31 Care of Dying adults in the last days of life. Early recognition of imminent death or uncertain recovery enables an individual plan of care to be developed, allows appropriate conversations to take place, ongoing treatment needs to be planned and delivered and the needs of families and others to be considered.

2. There is high compliance with dying people having an individualised end of life care plan. For category one deaths, where it was recognised that the patient may die imminently, this was reported at 82%.

3. The NACEL theme where there is the highest compliance in Northern Ireland is on ‘communication with the dying person’. In line with the high number of deaths that are recognised to be imminently dying, there was documented evidence that the possibility that the patient may die had been discussed with the patient (or a reason why not) recorded in 85% of cases.

4. An area that the audit has highlighted further work being required in Northern Ireland, is to encourage clinical teams to ensure that there is documented evidence of all conversations with the dying person, and those important to them, in the patient’s care records. This particularly applies around hydration, nutrition and the possibility of drowsiness from medication.

5. Physical health needs are more routinely documented as being assessed than emotional and psychological needs, spiritual/religious/cultural needs, and social and practical needs.

6. There are further opportunities for people approaching end of life to be involved in advance care planning. Northern Ireland has guidance and documentation available to assist health and care workers with this key aspect of end of life care.

Bespoke dashboards have been made available to all HSCTs and we request that these are reviewed, and action plans developed locally in the light of the findings. The Palliative Care in Partnership Programme Board will be working with partners across the system to deliver the regional recommendations (see pages 16 to 17 of this report).

Looking forward to round three of NACEL in Northern Ireland, all HSCTs will be involved in the NACEL Quality Survey, and we look forward to hearing the views of bereaved carers on their experiences of end of life care in Northern Ireland, when the findings from round three are reported. During round two, additional elements of NACEL were progressed to be delivered in round three.

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Foreword

A Staff Reported Measure (SRM) has been developed, piloted and validated and will be introduced in round three. This will give us valuable feedback from staff involved in delivering end of life care and will be triangulated with the other audit data sources. A feasibility report on the potential rollout of NACEL to community settings has been submitted to HQIP and we in Northern Ireland await with interest whether an audit of this vital area of the pathway is commissioned.

We would like to once again acknowledge and thank the audit teams within HSCTs who submitted data for the second round. The continued input of The Patients Association has meant consideration and involvement of patients, and those close to them, underlying all aspects of NACEL.

We commend the second report to you.

Mr Rodney MortonCo-Chair of the Palliative Care in Partnership Programme Board/Executive Director of Nursing, Midwifery and AHPs,Public Health Agency, Northern Ireland

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Executive summary

Background

This report represents the findings of the second round of the National Audit of Care at the End of Life (NACEL) which took place in 2019. NACEL was commissioned by the Healthcare Quality Improvement Partnership (HQIP) on behalf of NHS England and the Welsh Government in October 2017 to deliver three rounds of the audit. The Northern Ireland Public Health Agency, on behalf of the Regional Palliative Care in Partnership Programme, commissioned the NHS Benchmarking Network to deliver NACEL in Northern Ireland with the five Health and Social Care Trusts (HSCTs), and the first round of the audit took place in 2018. NACEL is a national comparative audit of the quality and outcomes of care experienced by the dying person and those important to them during the last admission leading to death in acute, community hospitals and mental health inpatient facilities in England, Wales and Northern Ireland.

NACEL is an annual audit managed by the NHS Benchmarking Network, supported by the Co-Clinical Leads, the NACEL Steering Group, and wider Advisory Group (Appendix 7).

The overarching aim of NACEL is to improve the quality of care of people at the end of life in acute, mental health and community hospitals. The audit monitors progress against the Five priorities for care set out in One Chance To Get It Right and NICE Quality Standards 13 and 144. The Five priorities for care reflect the Northern Ireland Department of Health circular HSS(MD) 21/2014 Advice To Health And Social Care Professionals For The Care Of The Dying Person In The Final Days And Hours Of Life – Phasing Out Of The Liverpool Care Pathway In Northern Ireland By 31 October 2014 setting out five principles that should underpin high quality care in the final days and hours of life. The principles reflected the good practice outlined in the Department’s Living Matters; Dying Matters (LMDM), Palliative and End of Life Care Strategy for adults, published in 2010.

Who should read this report

This report is designed to provide information for:

• people approaching end of life• people important to those receiving care at the end of life• people involved in providing care – CEOs, Non-Executive Directors, Medical Directors, Nursing

Directors and other staff in provider organisations • people involved in commissioning care – commissioners in the Local Commissioning Groups, the

Health and Social Care Board and the Public Health Agency in Northern Ireland. • people who regulate care

Second round of NACEL

The audit, undertaken during 2019/20, comprised:

• an Organisational Level Audit covering hospital/submission level questions;• a Case Note Review which reviewed consecutive deaths in the first two weeks of April 2019 and

the first two weeks of May 2019 (acute providers) or deaths in April and May 2019 (community providers); and

• a Quality Survey completed online, or by telephone, by the bereaved person. Northern Ireland did not complete this element in round two.

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Executive summary

Data for all elements of the audit was collected between June and October 2019. All HSCTs in Northern Ireland took part in the Organisational Level Audit and Case Note Review. The Quality Survey, which did not take place in Northern Ireland in round two, will be introduced for round three.

As in round one, the audit includes two categories of deaths; where dying was recognised (Category 1) and where dying was not recognised, but staff were not surprised (Category 2) (see section 1.5 for full definitions).

In response to round one findings and feedback, a number of changes to the scope and content of the audit were made in round two (see section 1.5). The key changes were as follows:• there was no trust/HB Organisational Level Audit since organisations scored well on ‘governance’

in round one• to reduce data burden on participants, the number of Case Note Reviews completed by each

hospital was reduced from 80 to 40• the audit period for the Case Note Review was amended from round one so that deaths were

audited where they occurred in the first two weeks of April and the first two weeks of May for acute providers and deaths in April and May for community providers.

• the content of the Case Note Review was reduced by 75%.• the content of the Quality Survey was reviewed and amended• the Quality Survey was unlinked from the Case Note Review in order to increase the number of

surveys returned.• the ‘involvement in decision making theme’ was not utilised in round two, as part of the

reduction in the size of the audit, due to this theme scoring well in round one• changes in the metrics utilised for the summary scores between audit rounds one and two are

outlined in the ‘Results’ section (Sections 5.1 to 5.5). Summary scores have been made available in Northern Ireland for the second round of NACEL only

This report was published in April 2020.

Overview of the results

Section 5 of this report contains results for acute and community hospitals in Northern Ireland taking part in the second round of NACEL. Results from the Organisational Level Audit and Case Note Review are presented together under five key themes.

For four of the five themes, a summary score has been developed and calculated for each hospital. The summary scores allow easy comparison between hospitals on the different themes within the audit. Unlike in round one, there is no summary score for ‘recognising the possibility of imminent death’ this year (see section 4.2). Further, the component metrics of the scores have changed since round one.

Appendix 2 sets out the process undertaken to select the key themes and their component indicators, and an explanation of how the scores are calculated. Summary scores now include Category 1 deaths only (see section 4.2). A table of the scores per hospital can be found at Appendix 1. The range of hospital scores is shown in the figures at the beginning of each key theme section. The number of Case Note Reviews completed in Northern Ireland was 375.

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Key findings

Key findings for each of the audit themes were as follows:

• The possibility that the patient may die within the next few hours/days was recognised in 91% of cases audited (pg 29).

• The median time from recognition of dying to death was recorded as 89 hours (pg 29).• 66% of people die within 7 days of recognition of the possibility that they may die (pg 30).

• There was documented evidence that the possibility of death had been discussed with the patient, or a reason why not recorded, in 85% of cases (pg 34).

• There was documented evidence that patient was involved in discussing the individualised plan of care, or a reason why not recorded, in 88% of cases (pg 34).

• Discussion about the risks and benefits of hydration options with the patient were recorded, or a reason why not documented, in 72% of cases (pg 35)

• The risks and benefits of nutrition options were documented as being discussed with the patient, or a reason why not documented, in 71% of cases (p 35).

• 96% of case notes had documented evidence that the possibility that the patient may die had been discussed with families and others (pg 38).

• Where an individualised plan of care existed, there was documented evidence, that families and others had the opportunity to be involved in discussing the plan of care, or a reason why not recorded, in 97% of cases (pg 39).

• Discussion about the risks and benefits of hydration and nutrition options with families and others were recorded, or a reason why not documented, in 45% and 34% of cases respectively, suggesting less compliance in these areas (pg 39-40).

Recognising the possibility of

imminent death

Executive summary

7.2Communication with the dying person

6.9Communication with families and others

-

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Executive summary

• For 18% of Category 1 deaths, there was no documented care plan for the dying person (pg43).

• Preferred place of death as indicated by the patient was documented in 11% of cases (pg 44).• The benefit of starting, stopping or continuing interventions was not documented as being

reviewed in the patient’s plan of care in between 17% and 40% of cases (pg 45).• There was higher compliance with documentation of assessment of the patient’s physical care

needs, than other areas such as emotional/psychological and spiritual/religious/cultural needs (pg 46).

• Anticipatory medications were prescribed in the majority (91%) of cases, although there were no indications for usage documented in 42% of cases (pg 47).

• All hospitals provide guidelines for anticipatory prescribing covering individualised indications for use, dosage & route, with 75% reporting guidance on anticipatory prescribing for patients transferring from hospital to home (pg 49).

• Most hospitals (95%) have access to a specialist palliative care service (pg 54).• However, no hospitals report having a face-to-face specialist palliative care service (doctor

and/or nurse) available 8 hours a day, 7 days a week (pg 54).• 33% of hospitals report having a telephone specialist palliative care service (doctor and/or

nurse) available 24 hours a day, 7 days a week (pg 54).

5.1Workforce/specialist palliative care

7.1Individualised plan of care

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Communication with the dying person

National Audit of Care at the End of Life 2019Key findings at a glance

Case notes recorded that the patient might die imminently

91%89 hours

Recognising the possibility of imminent death

Median time between recognition and death

Discussion with patients regarding individualised plan of care, or a reason why not recorded

88% 72%

7.2

Discussion with patients regarding hydration options, or a reason why not recorded

Discussion with families/others regarding the possibility the patient may die, or a reason why not recorded

97% 45%

Communication with families and others

Discussion with families/others regarding hydration options, or a reason why not recorded

6.9

20Organisational Level Audits

375Case Note Reviews

Individual plan of care

82%

61%

Case notes recorded an individualised plan of care

Case notes recorded patient’s nutrition status was reviewed regularly once dying was recognised

Case notes recorded patient's hydration status was assessed daily

77%

Hospitals report having a telephone specialist palliative care service (doctor and/or nurse) available 24 hours a day, 7 days a week

33%

Workforce

100%

Hospitals provide communications skills training specifically addressing end of life care

91%

Case notes recorded that anticipatory medications were prescribed

7.1

5.1

Recommendations

Below are the recommendations from the second round of NACEL for Northern Ireland. These recommendations relate specifically to the findings of NACEL.

The Northern Ireland Palliative Care in Partnership Programme will review these recommendations in line with the regional palliative care work plan and where applicable a regional approach may be taken to consider the NACEL recommendations. HSCTs’ local action plans should also be considering local audit results as shown in the NACEL online benchmarking toolkit and bespoke dashboards, in the context of the Northern Ireland recommendations and specific guidance.

Chief Executives of Health and Social Care Trust Boards should:-

1) Ensure that clinical teams delivering end of life care clearly and sensitively communicate with the dying person, where possible, and those important to the dying person, the possibility of side effects, from medications prescribed at the end of life. All communication should be documented in the patient’s care records.

2) Ensure that clinical teams delivering end of life care clearly and sensitively communicate with the dying person, where possible, and those important to the dying person, the risks and benefits of hydration and nutrition options, with documentation of the communication in the patient’s care records. This should include documenting whether the patient has been supported to eat and drink if this was the patient’s wish, and that their hydration/nutrition status has been regularly reviewed.

3) Ensure that patients at the end of life have an individualised plan of care which addresses and documents the following needs:-

- Emotional and psychological needs- Spiritual, religious and cultural needs, and- Social and practical needs

NG31 Care of Dying adults in the last days of life states that a plan for care and treatment must be developed to meet the dying person’s own needs and wishes in relation to how their care should be managed and any treatment preferences they may want to express. This plan must include attention to symptom control (e.g. relief of pain and other discomforts) and the person’s physical, emotional, psychological, social, spiritual, cultural and religious needs.

4) Ensure that every opportunity is taken to give dying people the option to participate in advance care planning, to reflect their choices and wishes at the end of their life. This should include documenting in the patient’s care records, the preferred place to die (if known), and facilitating this wherever possible.

5) Implement processes to ensure that communication with those close to the dying person on the use of anticipatory medicine is documented in the patient’s care record. This should include documented evidence of an individualised indication for the use of the anticipatory medication.

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Recommendations

6) Require all Trust Boards to receive an annual end of life performance report and action plan as part of the Trust Governance framework. The report and plan should aim to improve end of life care by building upon the learning from NACEL, the regional palliative care work plan and complaints and feedback from surveys, including those from bereaved people.

In collaboration with the Palliative Care in Partnership Programme, the Department of Health/Commissioners should:-

7) Work towards having specialist palliative care doctor and/or nurse telephone advice availability 24 hours a day, seven days a week. This is a part of an ongoing review of the specialist palliative care workforce in Northern Ireland, which also considers the allocation of the available resource across all settings, both face-to-face and telephone.

8) Work towards end of life care training programmes becoming embedded as part of induction programmes and also as part of mandatory/priority training programmes in Northern Ireland.

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1. Audit background and development

1.1 Policy context in Northern Ireland

In section 1 of The round one summary report for Northern Ireland, this contains the National Policy context for end of life care delivery in Northern Ireland, which has not changed since round one of NACEL.

1.2 Audit background and governance

NACEL was commissioned by HQIP on behalf of NHS England and the Welsh Government in October 2017. End of life care was prioritised as a NCAPOP topic by NHS England in October 2015. The audit has been commissioned to run for three annual cycles. The Northern Ireland Public Health Agency (PHA) commissioned NACEL separately to enable the five HSCTs in Northern Ireland to participate. Northern Ireland joined the cycle at a later date in round one and participated in the Organisational Level Audit only. In round two of NACEL, the Northern Ireland HSCTs have participated in the Organisational Level Audit and the Case Note Review (see section 1.5).

This report covers the findings from round two of the audit. As in the previous year, governance of NACEL has been through a multi-disciplinary Steering Group, with input from a wider Advisory Group. The membership of the Steering and Advisory Groups can be found at Appendix 7. Dr Suzanne Kite, Consultant in Palliative Medicine, and Elizabeth Rees, Lead Nurse for End of Life Care, from Leeds Teaching Hospitals NHS Foundation Trust, continue to provide joint clinical leadership of the audit. Northern Ireland were represented on both groups (see Appendix 7 for further information).

A diagrammatic representation of the governance arrangements can be found on the NACEL Project Management and Governance Structure organogram.

The findings for England and Wales are reported in a separate document.

1.3 Audit objectives

NACEL is a national comparative audit of the quality and outcomes of care experienced by the dying person and those important to them during the last admission leading to death in acute, community hospitals and mental health inpatient providers in England, Wales and Northern Ireland.

The objectives of NACEL encompass the following:

1. To refine the tools for assessing compliance with national guidance on care at the end of life –One Chance To Get It Right, NICE Guidelines and the NICE Quality Standards for end of life care.

2. To measure the experience of care at the end of life for dying people and those important to them.

3. To provide audit outputs which enable stakeholders to identify areas for service improvement.4. To provide a strategic overview of progress with the provision of high-quality care at the end of

life in England, Wales and Northern Ireland.

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https://s3.eu-west-2.amazonaws.com/nhsbn-static/NACEL/2019/NACEL%202018%20-%20Northern%20Ireland%20Summary%20report%20Final.pdf

https://s3.eu-west-2.amazonaws.com/nhsbn-static/NACEL/2020/NACEL%20Organogram%202020.pdf


1.4 Audit standards

NACEL measures the performance of hospitals against criteria relating to the delivery of care at the end of life which are considered best practice. These criteria are derived from national guidance, including One Chance To Get It Right and NICE Quality Standards and Guidance. Specifically, the audit was designed to capture information on the Five priorities for care of the dying person as set out in One Chance To Get It Right. The priorities make the dying person themselves the focus of care in the last few days and hours of life, and specifically cite outcomes which must be delivered for every dying person. The Five priorities for care of the dying person are as follows:

1. This possibility (that a person may die within the next few days or hours) is recognised and communicated clearly, decisions made and actions taken in accordance with the person’s needs and wishes, and these are regularly reviewed and decisions revised accordingly.

2. Sensitive communication takes place between staff and the dying person, and those identified as important to them.

3. The dying person, and those identified as important to them, are involved in decisions about treatment and care to the extent that the dying person wants.

4. The needs of families and others identified as important to the dying person are actively explored, respected and met as far as possible.

5. An individual plan of care, which includes food and drink, symptom control and psychological, social and spiritual support, is agreed, co-ordinated and delivered with compassion.

The audit is also closely aligned with NICE Quality Standards and Guidelines. NICE Quality Standard 13 End of life care for adults covers care for adults (aged 18 and over) who are approaching the end of their life. It includes people who are likely to die within 12 months, people with advanced, progressive, incurable conditions and people with life-threatening acute conditions. It also covers support for their families and carers and includes care provided by health and social care staff in all settings. It describes high quality care in priority areas for improvement. In March 2017, this quality standard was updated and statement 11 on care in the last days of life was removed and replaced by NICE’s Quality Standard 144.

More specifically, there are two publications from NICE which outline standards which should be expected for the dying person and those close to them in the last few days of life. NICE Clinical Guidelines NG31 Care of dying adults in the last days of life covers the clinical care of dying adults (18 years and over) in the last few days of life. It aims to improve care for people by communicating respectfully and involving them, and the people important to them, in decisions and by maintaining their comfort and dignity. The guideline covers how to manage common symptoms without causing unacceptable side effects and maintain hydration in the last days of life.

NICE Quality Standard 144, Care of dying adults in the last days of life, identifies priority areas for quality improvement for the same group of people as in NG31.

Northern Ireland adopts NICE guidance (NG31) as best practice in end of life care.

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https://www.nice.org.uk/guidance/qs13

https://www.nice.org.uk/guidance/ng31

https://www.nice.org.uk/guidance/qs144


1.5 Audit structure and scope

As in round one of the audit, NACEL covered the last admission to hospital prior to death and included NHS funded end of life care for adults (18+) in acute and community hospitals in Northern Ireland. Again, hospices were excluded. Mental Health providers of inpatient care did not take part in round two of the audit.

As in round one, NACEL had several elements, however some changes in the way these elements were delivered are noted below:

An Organisational Level Audit covering hospital/submission level questions. As in round one of NACEL, organisations could create multiple ‘submissions’ for their different hospital sites if they wished to audit the hospitals separately. Following feedback from participants in round one of the audit, the data requested for this audit element was substantially reduced and focused on activity, the specialist palliative care workforce, staff training and new questions on anticipatory prescribing. The element of the Organisational Level Audit completed at the Trust level (rather than submission level) in round one, covering policies and governance, was not undertaken in round two of NACEL but will be resumed for the third round (see section 7). The rationale for not including the Trust level data collection in round two was that audit participants demonstrated high compliance with the ‘governance’ summary score and policies would not be expected to change significantly in one year.

A Case Note Review completed for each submission. The Northern Ireland HSCTs participated in this audit element in round two of NACEL. The content of the Case Note Review was reduced by 75% in line with feedback from audit participants and focused on the themes of ‘recognition of imminent death’, ‘communication’ and ‘individualised plan of care’, highlighted in round one as key areas for improvement. On the advice of the NACEL Steering Group, to reduce data burden, acute providers were asked to undertake up to 40 Case Note Reviews, rather than 80 as in round one. Acute providers were requested to audit 20 consecutive deaths from the first two weeks of April and 20 consecutive deaths from the first two weeks of May. Community hospital providers were requested to audit all deaths during April and May up to a maximum of 40. The definition of deaths to be reviewed remained unchanged, as feedback from audit participants demonstrated that clinical reviewers were able to categorise the deaths appropriately. The following categories of deaths were audited: -

Category 1: It was recognised that the patient may die - it had been recognised by the hospital staff that the patient may die imminently (i.e. within hours or days). Life sustaining treatments may still be being offered in parallel to end of life care.

Category 2: The patient was not expected to die - imminent death was not recognised or expected by the hospital staff. However, the patient may have had a life limiting condition or, for example, be frail, so that whilst death wasn't recognised as being imminent, hospital staff were "not surprised" that the patient died.

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As in year one, deaths which were classed as "sudden deaths" were excluded from the Case Note Review. These were deaths which were sudden and unexpected; this included, but was not limited to, the following:• all deaths in Accident and Emergency departments• deaths within 4 hours of admission to hospital• deaths due to a life-threatening acute condition caused by a sudden catastrophic event, with a

full escalation of treatment plan in place. These deaths would not fall into either Category 1 or 2 above.

A Quality Survey designed to gain feedback from relatives, carers and those close to the person who died, on their experiences of the care and support received at the end of life. This was administered in England and Wales, but the Northern Ireland HSCTs did not participate in this element of the audit in round two. As can be seen from section 7, Northern Ireland will be participating in this audit element in round three.

Additional elements of NACEL undertaken in 2019

In line with contractual requirements, the NHSBN was tasked with developing two additional elements of the audit; a feasibility study on the rollout of NACEL to community settings, and the development of a Staff Reported Measure for rollout in the third round of NACEL. The Staff Reported Measure is covered in section 6.

1.6 Development of audit tools

Data specifications for all elements of the audit were developed in consultation with the NACEL Steering Group and wider Advisory Group. All final specifications were approved by the NACEL Steering Group.

The revised Case Note Review was piloted with five sites during February 2019, including sites within Northern Ireland, and feedback was received from all sites. The five pilot sites also tested out a revised methodology for generating the Quality Survey letters (although the Quality Survey was not completed at this stage by any bereaved people).

The Quality Survey was originally developed with the assistance of The Patients Association and was piloted with bereaved people in the Spring of 2018. For round two of NACEL, a revised Quality Survey was delivered, with the removal of all but one narrative response question, and the conversion of questions to a Likert scale, to enable ease of response.

The Quality Survey included 29 questions in three sections; demographics of the person responding to the Quality Survey; about the care provided to the person who died, and about the care and support received by the person responding to the Quality Survey. There was also the opportunity to include narrative responses to the open question “If you have any further comments regarding the care and support given to the person who died or to you and other close relatives or friends during the final admission in hospital, please detail”.

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2. Methodology

2.1 Eligibility, recruitment and registration

All HSCTs in Northern Ireland were requested to participate, all having sites delivering acute and community hospital provision. The Palliative Care in Partnership Programme Board wrote to all Chief Executives of the five HSCTs requesting participation in NACEL. All five HSCTs participated in round two of NACEL.

Registration was completed online as in round one. On registration, all organisations had the option of setting up multiple submissions to cover different hospital sites. Community hospital providers were offered the option of combining all sites into one submission where appropriate, however, some organisations chose to register separate hospitals/sites.

2.2 Data collection

Data collection opened on the 3rd June 2019 and closed on the 11th October 2019 for the two elements of NACEL in which Northern Ireland participated. No extensions were given due to timescales required to complete analysis and reporting.

For the Organisational Level Audit, participants were asked to complete one hospital/site level questionnaire for each submission created on registration. Questions related to 2018/19 data.

Acute hospital participants were asked to pull case notes for deaths during the first two weeks of April 2019 and the first two weeks of May 2019 and undertake a brief review to categorise them as Category 1, Category 2 or sudden deaths (see section 1.5 for definitions). Category 1 and 2 deaths were eligible to be included in the audit. Community hospital providers were requested to undertake the same exercise for all deaths occurring during April and May 2019. All participants were requested to complete up to 40 Case Note Reviews for eligible deaths.

In addition, audit participants were also requested to complete an Audit Summary with the following information:

• the number of deaths in the audit period excluding deaths within A&E and within 4 hours of admission to hospital;

• the total number of deaths in A&E within the audit period;• the total number of deaths within 4 hours of admission to hospital within the audit period; and• the number of quality survey letters sent.

Data collection for NACEL was via a bespoke online data entry tool for the Organisational Level Audit and the Case Note Review. The audit tool included definitional guidance for each metric requested, including additional guidance for Northern Ireland where appropriate. Excel versions of all data specifications could be downloaded to assist audit participants with internal data collation prior to the input of data onto the data collection tool.

Further validation controls were built into the system to ensure, for example, that if a death was categorised as a Category 2 death, then limited, applicable questions were available to respond to. The online data collection pages were simplified, and clearer steps were defined to enable easier responses to each audit element.

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2. Methodology

No patient or carer identifiable information was made available to the NHSBN.

As well as the guidance on the online data collection pages, audit guidance was provided for all audit participants containing a step-by-step guide on how to complete each element of NACEL. Data collection was also supported by the NHSBN team with a telephone helpline and dedicated e-mail support address to deal with specific queries.

2.3 Data validation and cleansing

Data validation controls were implemented on several levels within the online data collection tool. Information buttons next to each metric contained definitional guidance of the data required to ensure consistency of the data collected. In addition, system validation was implemented to protect the integrity of the data collected, including allowable ranges, expected magnitude of data fields, numerical versus text completion, appropriate decimal point placing and text formatting.

An extensive data validation exercise was undertaken from mid-October to the end of November 2019. Outlying positions and unusual data were queried with NACEL participants. A draft online toolkit was made available to NACEL participants at the beginning of November 2019 to assist with checking data submissions.

2.4 Data confidentiality and security

As required by the Data Protection Act 2018 and General Data Protection Regulation (GDPR), the NHSBN has registered with the Information Commissioners Office (ICO) as an organisation which processes data.

The NHSBN is Cyber Security Essentials certified and complies with NHS Digital’s Data Security and Protection Toolkit.

Participating HSCTs were requested to provide the NHSBN with key personnel they wished to have access to the online data collection tool. Entry to the online data collection tool was restricted via unique identifiers and passwords assigned to individuals during the registration process.

The NACEL NI Data Protection Impact Assessment (DPIA) was reviewed at the end of round one of the audit and updated to take into account the changes for round two of NACEL. The DPIA outlines the legal basis to process data for the audit, how data is held and used and considers privacy risks. The DPIA states that the data collected for NACEL may be used for clinical audit, service evaluation and research purposes. Any subsequent requests for the use of the Northern Ireland data held for NACEL will be managed via the Northern Ireland Public Health Agency.

An updated NACEL Fair Processing Notice was also displayed on the NACEL webpages, together with a data flow diagram which illustrated the various elements of data collection and how the data were to be used.

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https://www.cyberessentials.ncsc.gov.uk/

https://www.nhsbenchmarking.nhs.uk/s/NHS-Benchmarking-FPN-May-2019-006.docx

https://s3.eu-west-2.amazonaws.com/nhsbn-static/NACEL/2019/Data%20Flow%20Chart%20v3%20070519.pdf

2. Methodology

The NHSBN team also provided updated information governance guidance for participating HSCTs for the various elements of NACEL. The guidance was developed with the NHSBN’s Data Protection Officer and was reviewed on a regular basis.

No patient identifiable information was collected in any element of NACEL by NHSBN. All data collected by the NHSBN was pseudonymised.

2.5 Reliability analysis

The NACEL Steering Group agreed that a reliability analysis was not required in round two of NACEL due to the sample size of case notes being reduced and the results from the reliability analysis from round one of NACEL indicating ‘agreement’ on the summary score component metrics.

2.6 Management of Outliers Policy

The NACEL NI Management of Outliers Policy has been informed by HQIP guidance on outliers (2018) and approved by the Public Health Agency Northern Ireland. For round two of NACEL, the NACEL Steering Group agreed that a second indicator be used in addition to the indicator utilised in round one. The two indicators tested were as follows:

1. the proportion of deaths where it was recognised that the patient may die imminently (Category 1) out of Category 1 and Category 2 deaths; and

2. the proportion of Category 1 deaths where there was documented evidence that the patient who was dying had an individualised plan of care addressing their end of life care needs, out of all Category 1 deaths.

No hospitals within Northern Ireland were identified as potential outliers on the two indicators outlined above.

2.7 Cause for Concern Policy

The NACEL NI Cause for Concern Policy has been informed by HQIP guidance and approved by the Public Health Agency Northern Ireland. Comments to the narrative question in the Case Note Review (and in the case of England and Wales participants only, the Quality Survey narrative section) were reviewed by the NACEL Director and the Co-Clinical Leads. No HSCTs in Northern Ireland had any issues identified which met the formal ‘cause for concern’ definition as outlined in the policy.

All other comments received from respondents to the Case Note Review were fed back anonymously to participating hospitals for consideration by them in the context of their internal governance procedures.

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https://www.hqip.org.uk/resource/detection-and-management-of-outliers-for-national-clinical-audits-implementation-guide-for-ncapop-providers/#.XmuPwqj7SUk

3. Participation

All five HSCTs in Northern Ireland participated in NACEL round two. Table 1 illustrates which HSCTs registered submissions for acute and community hospital sites. All sites completed the hospital/site data specification and the audit summary data specification. The table also indicates the number of Case Note Reviews undertaken by each hospital site.

Table 1: Submissions registered, by type, and Case Note Reviews completed for each Health and Social Care Trust

In all, there were 13 acute submissions and 7 community hospital submissions registered. In Northern Ireland, 375 Case Note reviews were completed in total (338 from acute sites and 37 from community hospital providers).

Organisation Name Submission Name Type of siteCase Note Reviews

completed

Belfast Health and Social Care Trust

Belfast City Hospital Acute 24

Cancer Centre Acute 4

Mater Hospital (excluding Mental Health)

Acute 19

Musgrave Park Hospital Acute 2

Royal Victoria Hospital Acute 40

Northern Health and Social Care Trust

Antrim Area Hospital Acute 40

Causeway Hospital Acute 31

Dalriada Hospital Community 6

Inver Intermediate Care Unit Community 3

Mid Ulster Hospital Community 1

Robinson Memorial Community 9

South Eastern Health and Social Care Trust

Lagan Valley and Downe Hospitals Acute 14

Ulster Hospital Acute 37

Southern Health and Social Care Trust

Craigavon Area Hospital Acute 40

Daisy Hill Hospital Acute 24

Lurgan Hospital Community 3

South Tyrone Hospital Community 6

Western Health and Social Care Trust

Altnagelvin Hospital Acute 40

South West Acute Acute 23

Omagh Hospital Community 9

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4. How the findings are presented

4.1 Regional results

Section 5 of this report contains results from acute and community hospitals in Northern Ireland taking part in round two of NACEL.

4.2 Key themes and summary scores

The information in this report is presented thematically in five sections, derived from the Five priorities for care and other key issues. The themes are:

1. Recognising the possibility of imminent death (CNR)2. Communication with the dying person (CNR)3. Communication with the nominated person (CNR)4. Individualised plan of care (CNR)5. Workforce/specialist palliative care (H/S)

As in round one of NACEL, each summary score can only use indicators from one element of the audit. The following key is used to show the source of each theme:

• H/S = Hospital/site Organisational Level Audit • CNR = Case Note Review

Except for ‘recognising the possibility of imminent death’, a summary score has been developed and calculated for each theme for each hospital, with the mean values for the summary scores for Northern Ireland shown in the infographic below. The summary scores allow large amounts of data to be more easily digested and enable easy comparison between hospitals on the different themes within the audit. Each summary score only uses indicators from one element of the audit.

It is noted that Northern Ireland does not have summary scores for two further themes ‘needs of families and others’ and ‘families’ and others’ experience of care’, as in England and Wales, as these were derived from the Quality Survey element, which the Northern Ireland cohort did not participate in in the second round of NACEL.

The summary scores for round two for Northern Ireland are illustrated below.

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No summary score has been calculated for the ‘recognising the possibility of imminent death’ theme, as the metrics used to calculate this summary score have been utilised in the two communication themes (section 5.2 and 5.3). Further, the NACEL Steering Group reflected, following round one, that to report a summary score for the ‘recognising the possibility of imminent death’ theme may be misleading, since it is not possible to incorporate key information on timescales in the calculation of a score.

Summary scores include Category 1 deaths only. The component metrics for each summary score can be found in sections 5.1 to 5.5.

A table of the summary scores for each hospital in Northern Ireland can be found at Appendix 1. Not every hospital has received a full set of summary scores. To receive a full set, hospitals were required to provide completed responses for ‘workforce/specialist palliative care’ summary score component indicators from the Organisational Level Audit and more than five Case Note Reviews. Table 1 in section 3 illustrates the number of Case Note Reviews undertaken.

It should be noted that the mean summary scores for the different themes should not be compared with each other, as they have been calculated from different elements of the audit and are derived by different methods. Under each theme in this report, the component indicators of the summary score for the theme are reported on, together with other relevant indicators from other sections of the audit. In addition, narrative responses from the auditors completing the Case Note Reviews (section 5.1 to 5.4) have been analysed and the results are reported on. A selection of quotes from the narrative received are also included.

Additional information on patient demographics and characteristics of deaths in hospitals, is provided in Appendices 3 and 4.

4.3 Indicators in this report

The indicators used in this report are generally illustrated in column charts. To give an indication of number of hospitals/sites responding, all charts include the number of responses (in the format n=number). For ease of reference, chart titles have been abbreviated from the actual questions asked in the data collection pages. The results for each indicator are also quoted within the text as percentages. Appendix 6 includes the full wording of the question requested which has been illustrated within the report, together with the number of responses (n) used to calculate the percentage results. Appendix 6 references the figure number of each chart and where values are referenced in the narrative, but not included within the figure, a note is provided in the text as a subscript.

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4.4 Second round of NACEL NI outputs

There are four main outputs for audit participants:-

1. The online benchmarking toolkit. A draft toolkit was made available at the beginning of November 2019 to assist participants with validation queries and give early sight of HSCT positions against the full range of metrics. The final toolkit was published in late November 2019 which incorporated all changes following validation of the data.

2. A regional summary report for Northern Ireland for the second round of NACEL. Summary reports have been made available for Northern Ireland (this report), and separately for England and Wales (combined). These contain the high level findings and recommendations from NACEL for the respective countries.

3. Bespoke dashboards. These have been made available at submission level for every HSCT in Northern Ireland. The bespoke dashboards contain a selection of key metrics where individual submission positions are compared against regionally reported positions. The bespoke dashboards have been made available:-

• England and Wales bespoke dashboards – acute and community providers• Northern Ireland bespoke dashboard – acute and community provision within the five

HSCTs in Northern Ireland.

All data is anonymised in the online benchmarking toolkit and participating organisations know their own position only. Participant codes to permit identification of participating organisations have not been shared amongst participants. However, this report contains identified positions for the summary scores for each submission in a table (see Appendix 1).

4. Northern Ireland Feedback Event. A Feedback Event for NACEL was held on Wednesday 4th

March 2020. An invited audience heard key national speakers present on Northern Ireland national policy, as well as priorities for the Palliative Care in Partnership Programme Board. The NACEL findings and recommendations from round two were presented.

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The importance of early recognition that a person may be dying imminently is emphasised in One Chance To Get It Right and the NICE Quality Standard 144.

Priority 1: This possibility [that a person may die within the next few days or hours] is recognised and communicated clearly, decisions made and actions taken in accordance with the person’s needs and wishes, and these are regularly reviewed and decisions revised accordingly (One Chance To Get It Right).

NICE QS144: Adults who have signs and symptoms that suggest they may be in the last days of life are monitored for further changes to help determine if they are nearing death, stabilising or recovering (NICE Quality Standard 144).

Early recognition that a person may be dying enables an individual care plan to be developed, appropriate discussions with the patient and families to take place, treatment decisions to be made and the needs of the family to be considered. It underpins all the priorities for improving people’s experience of care in the last few days and hours of life.

As explained in section 4.2, there is no summary score for ‘recognising the possibility of imminent death’ in this round of the audit. The questions on whether the possibility that the patient may die had been discussed with the patient and with families and others have been moved to the relevant sections on communication (sections 5.2 and section 5.3 respectively). This section will focus on the time when recognition of dying took place.

5.1 Recognising the possibility of imminent death

As in round one, auditors were asked to classify deaths between Category 1, where it had been recognised by the hospital staff that the patient may die imminently (i.e. within hours or days) but where life-sustaining treatments may still be being offered in parallel to care at the end of life, and Category 2, where the patient was not expected to die, but the hospital staff were “not surprised”.

Figure 1 show that 91% of patients audited were classified as Category 1.

As noted above, timeliness of recognition of death is important to ensure appropriate discussions and planning can take place. The median time for the whole sample of case notes audited from first recognition of death to time of death was 89 hours1. As this was the first time that Northern Ireland took part in this element of NACEL, this now provides a baseline position for reporting against in future iterations of the audit. Further analysis of the data indicated that 25% of dying people in Northern Ireland had been in hospital longer than 480 hours (equating to 20 days).

91%

9%

Figure 1: (CNR) Category of deaths audited (n = 375)

Category 1 deaths Category 2 deaths

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Figures 2 and 3 provide an analysis of the time from recognition of dying to death in days and hours. Figure 2 considers the time in days for the whole Case Note Review sample, showing that 23% of patients die within one day of being admitted to hospital, and 66% of people die within 7 days of recognition of the possibility that they may die.

For the group of people that died within one day, figure 3 shows further detail, with analysis of the number of hours between recognition of dying and death. 24% died within 4 hours of recognition of death and 21% between 4 and 8 hours.


23%

13%

10%

6%8%

2%4% 5% 6%

3%4%

1%2% 2%

12%

1day

2days

3days

4days

5days

6days

7days

8days

9days

10days

11days

12days

13days

14days

14days +

0%

5%

10%

15%

20%

25%

Figure 2: (CNR) Time from recognition of dying to death (days) (n = 318)

24%

21%

15%

18%

17%

6%

Figure 3: (CNR) Time from recognition of dying to death (hours) up to 24 hrs (n = 72)

0 - 4 hours 4 - 8 hours 8 - 12 hours


30

32%

10%

4% 5% 4% 5% 4% 3%2% 2% 2% 3% 3%

0%

19%

1day

2days

3days

4days

5days

6days

7days

8days

9days

10days

11days

12days

13days

14days

14days +

0%

5%

10%

15%

20%

25%

30%

35%

Figure 4: (CNR) Time from admission to recognition (days) (n = 318)

9%

37%

28%

13%

3% 3% 2% 1% 1% 0%2%

0 - 1days

2 - 10days

11 - 20days

21 - 30days

31 - 40days

41 - 50days

51 - 60days

61 - 70days

71 - 80days

81 - 90days

90+days

0%

5%

10%

15%

20%

25%

30%

35%

40%

Figure 6: (CNR) Time from admission to death (days) Category 1 deaths only (n = 340)


The time from admission to recognition of

dying, and the total length of stay were also

considered in the audit. For 64% of the

Case Note Review sample, the time

between admission and recognition of

dying was one week or less (figure 4).

Where the time from admission to

recognition of death was less than 24

hours, in 55% of cases, recognition of dying

was recognised within 4 hours (figure 5).

The distribution of total length of stay in

days is shown in figure 6 and 7, illustrating

that 12% of patients were in hospital for

more than a month in total for Category 1

and Category 2 deaths, in their last episode

of care leading to death.

55%

15%

6%

12%

8%5%

Figure 5: (CNR) Time from admission to recognition (hours) up to 24 hrs (n = 103)



6%

53%

28%

0%

6%3%

0% 0% 0% 0%3%

0 - 1days

2 - 10days

11 - 20days

21 - 30days

31 - 40days

41 - 50days

51 - 60days

61 - 70days

71 - 80days

81 - 90days

90+days

0%

10%

20%

30%

40%

50%

60%

Figure 7: (CNR) Time from admission to death (days) Category 2 deaths only (n = 32)

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Recognising the possibility of imminent death: Families’ and others’ comments

The NACEL Case Note Review captured narrative comments from auditors about areas of excellent practice and learning points identified from undertaking a Case Note Review. Of the comments about excellent practice, 16% (23/147) referenced recognition of dying.

“Quick identification of end of life status. Good Palliative input from team and ward staff.”

“Early recognition of deterioration.”

“Nurse explained to the family that patient was entering the "terminal phase" and medications were to be prescribed as needed.”

Of the comments on learning points identified from undertaking the Case Note Review, 8% (13/153) of comments referenced late recognition of death.

“Recognition of death only documented hours before death.”

“The period of recognition of death to death itself is very short – 1 hour.”

“Poor recognition that the patient was dying.”

Summary: Recognising the possibility of imminent death

One Chance To Get It Right, 2014 acknowledges that recognition of imminent death is not an

exact science and staff should have an awareness of recognising and communicating uncertainty

early in the hospital admission. The Case Note Review showed a high level of recognition of the

possibility that the patient might die within the next few hours/days (91%).

In round two, the median time from recognition of dying to death was recorded as 89 hours.

Whilst appropriate early recognition is key to ensuring planning and discussions take place, it is

not possible or desirable to suggest an ‘optimal’ median time. Further, in hospitals where earlier

recognition is achieved, it is possible that a greater number of people are transferred elsewhere

and are therefore not included in this audit of hospital deaths.

Even though the recognition of the possibility that a person may die is reported as around three

and a half days prior to dying, there are narrative comments from the Case Note Review

suggesting that there are still opportunities to recognise dying earlier and plan accordingly. The

findings would suggest that there is some room for improvement in this area.


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Communication with the dying person: Round two (2019/20) summary score

The round two summary score for ‘communication with the dying person’ is calculated using the following information collected in the Case Note Review (a weighting of 1.0 is allocated unless indicated otherwise):

Documented evidence:• the possibility that the patient may die was discussed with the patient• the patient had the opportunity to be involved in discussing the individualised plan of care• the possibility of drowsiness, if likely as a result of prescribed medications, was discussed with

patient• risks and benefits of hydration options was discussed with patient• risks and benefits of nutrition options was discussed with patient

As explained in section 4.2, in round two, the summary scores are calculated from Category 1 deaths only.

The range of hospital mean summary scores for the ‘communication with the dying person’ is shown in figure 8. The mean value of the summary score across the whole sample of case notes is 7.2 (n=339).

0

5

10

Figure 8: Hospital mean summary scores: Communication with the dying person (submission n = 14)

Open and honest communication between staff and the person dying, and those identified as important to them, is critically important to good care. This section presents findings from the Case Note Review on communication with the dying person.

5.2 Communication with the dying person

7.2Communication with the dying person

Range = 3.2 – 8.7

Priority 2: Sensitive communication takes place between staff and the dying person, and those identified as important to them (One Chance To Get It Right).

NICE QS144: “Adults in the last days of life, and the people important to them, are given opportunities to discuss, develop and review an individualised care plan (Statement 2 , NICE Quality Standard 144).

Notes to Priority 3: The person, and those important to them, must be told who is the senior doctor in the team who has responsibility for their treatment and care, whether in hospital or in the community, and the nurse leading their care (One Chance To Get It Right).

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34

The importance of clearly and sensitively explaining to the patient that they are likely to die is emphasised in the guidance. For Category 1 deaths in round two, there was documented evidence that the possibility that the patient may die had been discussed with the patient, or a reason why not recorded, in 85% of cases (figure 9).

23%

62%

15%

0%

20%

40%

60%

80%

Category 1(n = 342)

Figure 9: (CNR) Possibility that the patient may die had been discussed with the patient (Category 2 not asked)

Yes No but reason recorded No & no reason recorded

24% 25%

0%

63% 63%

78%

13% 12%22%

0%

20%

40%

60%

80%

100%

All deaths(n = 290)

Category 1(n = 281)

Category 2(n = 9)

Figure 10: (CNR) Patient was involved in discussing the individualised plan of care


Care at the end of life should be responsive to the needs and wishes of the person who is dying and those wishes should be captured in an individualised plan of care (see section 5.4). Where an individualised plan of care existed (see section 5.4), there was documented evidence, for Category 1 deaths in round two, that the patient had the opportunity to be involved in discussing the plan of care, or a reason why not recorded, in 88% of cases, (figure 10). This question was clarified between the two rounds of the audit (see also section 5.4).

6%

66%

28%

0%

20%

40%

60%

80%

Category 1(n = 341)

Figure 12: (CNR) Risks and benefits of hydration options discussed with the patient (Category 2 not asked)

Yes No but reason recorded/ N/A No & no reason recorded

3% 3% 0%

58% 57%69%

39% 40%31%

0%

20%

40%

60%

80%

All deaths(n = 370)

Category 1(n = 341)

Category 2(n = 29)

Figure 11: (CNR) Possibility of drowsiness as a result of prescribed medications discussed with the patient


For Category 1 deaths in round two, there was evidence that the possibility of drowsiness, if likely as a result of prescribed medications, was discussed with the patient, or a reason why not recorded, in 60% of cases (figure 11).

Discussion about the risks and benefits of hydration options with the patient were recorded, or a reason why not documented, in 72% of cases in round two (figure 12).

The risks and benefits of nutrition options were documented as being discussed with the patient, or a reason why not documented, in 71% of cases in round two (figure 13). The response of ‘no and no reason recorded’, in both instances, was 28% and 29% respectively.


6%

65%

29%

0%

20%

40%

60%

80%

Category 1(n = 342)

Figure 13: (CNR) Risks and benefits of nutrition options discussed with the patient (Category 2 not asked)


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Communication with the dying person: Families’ and others’ comments

From the auditors’ comments from the Case Note Review on learning points identified, 21% (32/153) of these comments referenced communication.

“Clear discussion with patient should have been documented.”

“No documentation regarding drowsiness caused by prn medication with either patient or relative.”

Of the auditors’ comments highlighting areas of excellent practice from the Case Note Review, 52% (77/147) were about communication.

“Long discussions documenting carefully patients discussion and decisions and giving him control in dying.”

“Clear discussion between surgeons and patient re deterioration and nearing EOL.”

Summary: Communication with the dying personThe findings of the second round of NACEL now give the Northern Ireland cohort a baseline position on compliance with discussions, and documentation of those discussions, with the dying person. Whilst it was recorded in 85% of cases that there was documented evidence of the possibility that the patient may die recorded as either ‘yes’ in the case notes or ‘no but reason recorded’, and good compliance with involving the dying person in discussing the individualised plan of care, there is room for improvement in the recording of conversations with the dying person about drowsiness. This is also the case in the recording of conversations about the risks and benefits of both hydration and nutrition options being discussed with the dying person.

Recommendation 1 Ensure that clinical teams delivering end of life care clearly and sensitively communicate with the dying person, where possible, and those important to the dying person, the possibility of side effects, such as drowsiness, from medications prescribed at the end of life. All communication should be documented in the patient’s care records.

Recommendation 2 Ensure that clinical teams delivering end of life care clearly and sensitively communicate with the dying person, where possible, and those important to the dying person, the risks and benefits of hydration and nutrition options, with documentation of the communication in the patient’s care records. This should include documenting whether the patient has been supported to eat and drink if this was the patient’s wish, and that their hydration/nutrition status has been regularly reviewed.


In addition to the previous metrics being used for the summary score, it should be noted that staff communication with the dying person is really important, and it is worth noting here (further explanation in section 5.5) that 100% of hospitals in Northern Ireland report that they have communication skills training relating to end of life care in place.

36

As noted in section 5.2, open and honest communication between staff and the dying person, and those identified as important to them, is critically important to good care. In this section, findings from the Case Note Review on communication with families and others, are presented.

Priority 2: Sensitive communication takes place between staff and the dying person, and those identified as important to them (One Chance To Get It Right).

NICE QS144: “Adults in the last days of life, and the people important to them, are given opportunities to discuss, develop and review an individualised care plan” (Statement 2 , NICE Quality Standard 144).

Notes to Priority 3: The person, and those important to them, must be told who is the senior doctor in the team who has responsibility for their treatment and care, whether in hospital or in the community, and the nurse leading their care (One Chance To Get It Right).

Communication with families and others: Round two (2019/20) summary score:

The round two summary score for ‘communication with families and others’ is calculated using the following information collected in the Case Note Review (a weighting of 1.0 is allocated unless indicated otherwise):

Documented evidence:• the possibility that the patient may die was discussed with the families and others• families and others had the opportunity to be involved in discussing the patient’s individualised

plan of care• families and others were notified that the patient was about to die• the possibility of drowsiness, if likely as a result of prescribed medications, was discussed with

families and others (weighting 0.5)• risks and benefits of hydration options was discussed with families and others• risks and benefits of nutrition options was discussed with families and others (weighting 0.5)


The range of hospital mean summary scores for ‘communication with families and others’ is shown in figure 14. The mean value of the summary score across the whole sample of case notes is 6.9 (n=340).

5.3 Communication with families and others

Communication with families and others 6.9

0

2

4

6

8

10

Figure 14: Hospital mean summary scores: Communication with families and others (n = 14)

Range = 5.0 – 7.5

37

Given that the possibility that a person may be dying may only be recognised around three and a half days before death occurring in Northern Ireland, (section 5.1), it may be more likely that key conversations will take place with those important to the dying person, than with the dying patient themselves, and this is borne out by the audit results.

96%

1% 2%0%

20%

40%

60%

80%

100%

Category 1(n = 342)

Figure 15: (CNR) Possibility that the patient may die had been discussed with families and others (Category 2 not asked)


57%

36%

7%

0%

20%

40%

60%

80%

100%

Category 1(n = 342)

Figure 16: (CNR) Families and others were notified that the patient was about to die (Category 2 not asked)


For Category 1 deaths in round two, there was documented evidence that the possibility that the patient may die had been discussed with the families and others, or a reason why not recorded, in 97% of cases (figure 15). There is a very low proportion of ‘no and no reason recorded’ responses suggesting that these conversations are occurring in Northern Ireland.

In round two, for Category 1 deaths, evidence that families and others were notified of the patient was about to die was recorded, or a reason why not documented, in 93% of cases (figure 16), suggesting good compliance in this key area of end of life care.


38

34%

11%

55%

0%

20%

40%

60%

80%

100%

Category 1(n = 342)

Figure 19: (CNR) Risks and benefits of hydration options discussed with families and others (Category 2 not asked)


7% 8% 4%15% 11%

57%

78% 81%

39%

0%

20%

40%

60%

80%

100%

All deaths(n = 369)

Category 1(n = 341)

Category 2(n = 28)

Figure 18: (CNR) Possibility of drowsiness as a result of prescribed medications discussed with families and others


95% 95% 89%

2% 2% 0%3% 3%11%

0%20%40%60%80%

100%

All deaths(n = 290)

Category 1(n = 281)

Category 2(n = 9)

Figure 17: (CNR) Families and others were involved in discussing the individualised plan of care


Where an individualised plan of care existed (see section 5.4), there was documented evidence, for Category 1 deaths in round two, that families and others had the opportunity to be involved in discussing the plan of care, or a reason why not recorded, in 97% of cases (figure 17).

For Category 1 deaths in round two, there was evidence that the possibility of drowsiness, if likely as a result of prescribed medications, was discussed with families and others, or a reason why not recorded, in 19% of cases (figure 18).

Discussion about the risks and benefits of hydration options with families and others were recorded, or a reason why not documented, in 45% of cases in round two (figure 19).


39

Communication with the dying person: Families’ and others’ comments

As mentioned in section 5.2, 21% (32/153) of auditors’ comments from the Case Note Review identified communication as a learning point.

“No documented specific evidence of discussion with family re: nutrition/hydration.”

“Better documentation of what conversation took place with family regarding process of dying.”

Of the auditors’ comments highlighting areas of excellent practice from the Case Note Review, 52% (77/147) were about communication.

“Good involvement of family in care.”

“Detailed documentation of regular conversations with family; aware that patient unlikely to survive. Medical team answered any questions, discussed withdrawal of active treatment and continuous infusion commencement. Good support provided to family.”

The risks and benefits of nutrition options were documented as being discussed with the families and others, or a reason why not documented, in 34% of cases in round two (figure 20). For these three areas, instances where there was no documented discussion, and no reason why not recorded, is as follows; for the possibility of drowsiness it was 81%; for the risks and benefits of hydration options, 55% and for the risks and benefits of nutrition options, 66%, suggesting less compliance in these areas.


21%13%

66%

0%

20%

40%

60%

80%

100%

Category 1(n = 342)

Figure 20: (CNR) Risks and benefits of nutrition options discussed with families and others (Category 2 not asked)


40

Summary: Communication with the families and others

There was documented evidence in the case notes that the possibility that the patient may die had been discussed with the families and others in almost all cases. There was also high compliance with documenting discussions with families and others about the individualised plan of care, where such a plan existed.

For conversations about drowsiness as a result of medications, hydration and nutrition options, the Case Note Review showed a higher proportion of cases where no discussion with families and others was documented, and no reason why not recorded.

Recommendation 1 Ensure that clinical teams delivering end of life care clearly and sensitively communicate with the dying person, where possible, and those important to the dying person, the possibility of side effects, such as drowsiness, from medications prescribed at the end of life. All communication should be documented in the patient’s care records.

Recommendation 2 Ensure that clinical teams delivering end of life care clearly and sensitively communicate with the dying person, where possible, and those important to the dying person, the risks and benefits of hydration and nutrition options, with documentation of the communication in the patient’s care records. This should include documenting whether the patient has been supported to eat and drink if this was the patient’s wish, and that their hydration/nutrition status has been regularly reviewed.


41

The Five priorities for care of the dying person make clear that there must be an individualised plan of care. The plan for end of life care should be documented and should be part of other care planning processes. The dying person and those important to them should have the opportunity to discuss the plan (this point is discussed under ‘communication with the dying person’ (section 5.2) and ‘communication with families and others’ (section 5.3)).

In this section, the results from the Case Note Review relating to the individualised plan of care are presented.

Priority 5: An individual plan of care, which includes food and drink, symptom control and psychological, social and spiritual support, is agreed, co-ordinated and delivered with compassion (One Chance To Get It Right).

NICE QS144: Adults in the last days of life who are likely to need symptom control are prescribed anticipatory medicines with individualised indications for use, dosage and route of administration(Statement 3, NICE Quality Standard 144).

NICE QS144: Adults in the last days of life have their hydration status assessed daily, and have a discussion about the risks and benefits of hydration options (Statement 4, NICE Quality Standard 144).

Individualised plan of care: Round two (2019/20) summary score

For round two of NACEL, the summary score for ‘individualised plan of care’ is calculated using the following information collected in the Case Note Review (a weighting of 1.0 is allocated unless indicated otherwise):

• documented evidence that patient had an individualised care plan (weighting 0.5)

• regular review of patient and plan of care (weighting 0.5)

• documented evidence of preferred place of death as indicated by patient

• documented review of (weighting 0.25 each):

o routine recording of vital signs

o blood sugar monitoring

o administration of oxygen

o administration of antibiotics

o routine blood tests

o other medication

• documented assessment of hydration status once dying phase recognised

• documented assessment of nutrition status once dying phase recognised

• holistic assessment of needs covering 14 domains (weighting 0.25 each)


5.4 Individualised plan of care

Individualised planof care 7.1

42

The range of hospital mean summary scores for ‘individualised plan of care’ is shown in figure 21. The mean value of the summary score across the whole sample of case notes is 7.1 (n=316).

0

1

2

3

4

5

6

7

8

9

10

Figure 21: Hospital mean summary scores: Individualised plan of care (n = 14)

For Category 1 deaths in round two, there was documented evidence that the patient who was dying had an individualised plan of care in 82% of cases (figure 22). Category 2 deaths are much less likely to have a plan in place (29%) (figure 22), although this reported figure from Northern Ireland illustrates that in some instances, end of life care planning may be being pursued in tandem with care planning generally.

In the round one Case Note Review element of the audit (in which Northern Ireland did not participate), the phrase ‘end of life care plan’ was used in the key question about the existence of a plan of care, possibly leading auditors to respond ‘no’ where a specific ‘end of life’ template was not being used. For round two, the question was re-phrased to ask ‘Is there documented evidence that the patient who was dying had an individualised plan of care addressing their end of life care needs?’. The following additional guidance was provided: ‘Please respond 'Yes' if a plan of care personalised to the individual was used which covered their specific end of life care needs such as food and drink, symptom control, psychological, social and spiritual support. This plan of care does not need to be a separate document to the general clinical and nursing care plans’. This change in definitional guidance has helped clarify with clinical reviewers, how to respond to the question appropriately.


Range = 5.9 – 8.0

78% 82%

29%22% 18%

71%

0%

20%

40%

60%

80%

100%

All deaths(n = 373)

Category 1(n = 342)

Category 2(n = 31)

Figure 22: (CNR) Patient who was dying had an individualised plan of care

Yes No

43

61%

39%

Figure 26: (CNR) The patient's nutrition status was reviewed regularly once the dying phase

was recognised (Category 1) (n = 338)

Yes No

11% 11% 12%

89% 89% 88%

0%

20%

40%

60%

80%

100%

All deaths(n = 374)

Category 1(n = 341)

Category 2(n = 33)

Figure 24: (CNR) Preferred place of death documented as indicated by the patient

Yes No

91% 91% 89%

9% 9% 11%1% 1% 0%

0%

20%

40%

60%

80%

100%

All deaths(n = 290)

Category 1(n = 281)

Category 2(n = 9)

Figure 23: (CNR) Patient's individualised plan of care was reviewed regularly

Yes Patient died before a review was necessary No

In the second round of NACEL, for Category 1 deaths, where a plan existed, the patient and their plan of care was reviewed regularly, or the patient died before the review was necessary, in 100% of cases (figure 23), suggesting full compliance in this area. For Category 2 deaths, 100% of care plans were reviewed or the patient died before the review was necessary, where a care plan was in existence (figure23).

The summary score for ‘individualised plan of care’ includes an indicator on documentation of the preferred place of death as indicated by the patient (figure 24). For Category 1 deaths, this was 11% and 12% for Category 2 deaths.

Hydration status was documented as being assessed daily once the dying phase was recognised in 77% of cases, and nutrition status in 61% of cases (figures 25 and 26).


77%

23%

Figure 25: (CNR) The patient's hydration status was assessed daily once the dying

phase was recognised (Category 1) (n = 340)

Yes No

44

73%68%

57% 60% 56%

18%

1%2%

3%

20%20%

65%

26% 30%40%

20% 23%17%

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Recording of vitalsigns

(n = 342)

Other medication(n = 335)

Routine bloodtests

(n = 342)

Administration ofantibiotics(n = 342)

Administration ofoxygen

(n = 341)

Blood sugarmonitoring

(n = 342)

Figure 29: (CNR) The benefit of starting, stopping or continuing the interventions documented as being reviewed in the patient's plan of care (Category 2 not asked)

Yes N/A No

65%

28%

7%

Figure 27: (CNR) Patient was supported to drink as long as they were able and wished to

do so (Category 2 not asked) (n = 341)

Yes N/A No

60%31%

9%

Figure 28: (CNR) Patient was supported to eat as long as they were able and wished to do so

(Category 2 not asked) (n = 342)

Yes N/A No

There was documented evidence that the dying person was supported to drink, as long as they were able and wished to do so, in 93% of cases (including where this was N/A) (figure 27). In relation to the dying person being supported to eat, or where this was not applicable, this was in 91% of cases (figure 28).

Priority 1 of the Five priorities for care for the dying person (One Chance To Get It Right, 2014) (considered in section 1.4) emphasises the importance of regular review and revision of decisions accordingly. The remaining metrics in the ‘individualised plan of care’ summary score relate to documentation of review and assessment. As shown in figure 29, the benefit of starting, stopping or continuing routine recording of vital signs, the administration of oxygen and antibiotics, routine blood tests and other medication was reviewed and documented in between 56% and 73% of cases. A review was not recorded in between 17% and 40% of cases. Blood sugar monitoring was reviewed in 18% of cases, but was not applicable in 65% of cases.


45

97%

95%

97%

89%

87%

91%

87%

76%

86%

81%

74%

70%

61%

58%

1%

1%

2%

2%

2%

3%

2%

4%

4%

8%

3%

2%

5%

3%

10%

12%

7%

11%

22%

11%

18%

23%

26%

31%

39%

0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%

Pressure areas (n = 341)

Hygiene requirements (n = 341)

Bladder function (n = 341)

Pain(n = 342)

Bowel function (n = 341)

Dyspnoea/breathing difficulty (n = 340)

Agitation/delirium (n = 341)

Mouth care (n = 339)

Anxiety/distress (n = 340)

Noisy breathing/death rattle (n =341)

Nausea/vomiting (n = 340)

Social/practical needs (n = 341)

Emotional/psychological needs (n = 340)

Spiritual/religious/cultural needs (n = 339)

Figure 30: (CNR) Documented evidence of an assessment of the following needs (Category 1 only)

Yes N/A No

n = 6,670

n = 6,643

n = 6,658

n = 6,667

Assessment of needs across 14 domains was included in the ‘individualised plan of care’ summary score. Figure 30 shows which needs were assessed as part of holistic needs assessment. Compliance was generally high when assessing physical needs (from 74% for nausea/vomiting to 97% for pressure care).

Lower compliance was recorded for other needs, with the percentage stating ‘no’ at 39% for spiritual/religious/cultural needs and 26% for social/practical needs. For emotional/psychological needs, for Category 1 deaths, the percentage stating ‘yes’ was 61% in round two (figure 30).


46

3% 3% 6%5% 5% 3%

88% 88% 88%

4% 4% 3%

0%20%40%60%80%

100%

All deaths(n = 374)

Category 1(n = 341)

Category 2(n = 33)

Figure 31: (CNR) Patient had participated in advance care planning

Yes, prior to admission Yes, during the final admission No advance care plan N/A

12%

79%

8% 1%0%

20%40%60%80%

100%

Category 1(n = 342)

Figure 32: (CNR) Anticipatory medication was prescribed for symptoms likely to occur in the last days of life (Category 2 not asked)

Yes, prescribed but not used Yes, prescribed and administered No N/A

31% 27%

42%

0%

20%

40%

60%

Category 1(n = 310)

Figure 33: (CNR) An indication for the use of the medication was included within the prescription (Category 2 not asked)

Yes, for all medications prescribed Yes, for some medications prescribed No

n = 6,670

n = 6,670

n = 6,643

n = 6,658

n = 6,667

Advance care planning is an important part of individualised care planning. Analysis from round two indicates that in Northern Ireland, there is limited advance care planning occurring, reported as 88% across both Category 1 and Category 2 deaths (figure 31).

Anticipatory medicines: results from Case Note Review and Organisational Level Audit


In round two, new questions were included in the Case Note Review element on anticipatory prescribing for Category 1 deaths only.

There was documented evidence that anticipatory medication was prescribed, and administered, for symptoms likely to occur in the last days of life, in 79% of cases, prescribed but not used in 12%, and no evidence regarding anticipatory prescribing in 8%, of cases (figure 32). For 1% of cases, patients were in the HDU/ICU setting with symptoms managed by existing IV infusions and the question was therefore not applicable (figure 32).

An indication for the use of the medication was included within the prescription for all medications prescribed in 31% of cases, for some medications prescribed, in 27%, and no indication documented in 42% of cases (figure 33).

47

51% 54%

19%

49% 46%

81%

0%

20%

40%

60%

80%

100%

All deaths(n = 374)

Category 1(n = 342)

Category 2(n = 32)

Figure 36: (CNR) The patient had a continual infusion of medications, for example via a syringe pump

Yes No

19%

63%

18%

0%

20%

40%

60%

80%

Category 1(n = 310)

Figure 34: (CNR) A discussion about the use of anticipatory medication was undertaken with the patient (Category 2 not asked)


For those patients where anticipatory medicine was prescribed, a discussion with the patient about their use was held in 19% of cases, with no documented discussion and no reason why not, in 18% of cases (figure 34). This discussion was much more likely to be held with people important to the dying person (74% of cases), but in 22% of cases there was no discussion recorded and no reason why not (figure 35).

A question on the use of continual infusion of medication was asked for all people who died in round two of the audit. As shown in figure 36, for Category 1 deaths, 54% of patients had a continual infusion of medications, for example via syringe pump. For Category 2 deaths, this was 19% (figure 36).


74%

5%

22%

0%

20%

40%

60%

80%

Category 1(n = 310)

Figure 35: (CNR) A discussion about the use of anticipatory medication was undertaken with families/others (Category 2 not asked)


48

100%

Figure 39: (H/S) Guidelines for anticipatory prescribing covering individualised

indications for use, dosage & route (n = 20)

Yes No

75%

25%

Figure 40: (H/S) Guidance on anticpatory prescribing for patients transferring from

hospital to home (n= 20)

Yes No

80% 80%

100%

5% 5% 0%14% 15%

0%0%

20%

40%

60%

80%

100%

All deaths(n = 189)

Category 1(n = 183)

Category 2(n = 6)

Figure 38: (CNR) The need for a syringe pump was discussed with families/others


27% 27%33%

58% 58%50%

15% 15% 17%

0%

20%

40%

60%

80%

All deaths(n = 189)

Category 1(n = 183)

Category 2(n = 6)

Figure 37: (CNR) The need for a syringe pump was discussed with the patient


Where a syringe pump was in place, for Category 1 deaths, a discussion with the patient took place in 27% of cases, with no and no reason recorded in 15% of cases (figure 37), and with the family/others in 80% of cases, with no and no reason recorded in 15% of cases (figure 38).

From the Organisational Level Audit, all hospitals in Northern Ireland indicated they have guidelines for anticipatory prescribing which specifically requires medication to have individualised indications for use, dosage and route of administration (figure 39). 75% of hospital guidelines include guidance on anticipatory prescribing for patients transferring from hospital to home or care home to die (figure 40).


49

An important element of individualised care planning is understanding the wishes and preferences of dying people, and those important to them. Advanced care planning is one element of this. Given that on average, the dying person was in hospital up to three and a half days before dying in Northern Ireland, it is documented in 5% of cases only that the dying person had participated in end of life care planning during the final admission. It was documented that 3% of dying people had participated in advance care planning prior to their last admission. This is in relation to all deaths.

Individualised plan of care: Families’ and others’ comments

From the Case Note Review narrative responses about areas of excellent practice, the following areas were identified:

• 17% (25/147) related to anticipatory medication

• 7% (11/147) related to care planning

• 5% (7/147) related to advance care planning

• 5% (7/147) related to active treatment

• 2% (3/147) related to DNACPR

• 1% (2/147) related to hydration/nutrition

“Family contacted and allowed extended time to stay with patient at time of death. Attempt made to stop active treatment and discussed with family who were resistive.”

“Clear identification/plan/communication/appropriate management.”

“Good documentation of conversations with nominated person. Good clear plan and excellent anticipatory prescribing for end of life.”

Furthermore, the following learning points were identified from the Case Note Review:

• 25% (38/153) related to hydration/nutrition

• 12% (18/153) related to anticipatory medication

• 8% (12/153) related to active treatment

• 7% (11/153) related to DNACPR

• 6% (9/153) related to care planning

• 3% (5/153) related to advance care planning

“With regard to nutrition and hydration - the patient was semi-conscious since admission. All Oral meds prescribed but unable to take.”

“Resuscitated from cardiac arrest and then a ceiling of care was set. Recognition and established escalation plan earlier would have been useful.”


50

Summary: Individualised plan of care

The results for the existence of an individualised plan of care for every patient suggest high compliance with this standard at 82%. However, there are still almost a fifth (18%) of Category 1 cases with no documented care plan for the dying person. Further, a proportion of narrative comments from those completing the Case Note Review highlighted concerns with end of life care planning and missed opportunities to do so.

The recording of the review of the benefit of starting, stopping or continuing interventions has provided a baseline position for Northern Ireland from round two of the audit.

There was evidence that there was higher compliance with documentation of assessment of the patient’s physical care needs, than other areas such as emotional/psychological and spiritual/religious/cultural needs in Northern Ireland. Given that the median time from recognition of death to dying was almost three and a half days in Northern Ireland, there may be opportunities to improve further the need for every dying person to have an individualised plan of care at the end of life.

Further, analysis indicated that participation in advance care planning was limited, even though Northern Ireland have guidance available, across all care settings, to facilitate this process. Given that the median time from recognition of death to dying was almost three and a half days in Northern Ireland, there may well have been missed opportunities for patients to participate in advance care planning.

Whilst anticipatory medications were prescribed in the majority (91%) of cases, there were no indications for usage documented in 42% of cases. Discussions about anticipatory prescribing were more likely to take place with families and others, than with the patient. There is scope for better recording of such conversations. Within Northern Ireland, there are regional guidelines (The Regional Palliative Care Management Group: Guidance for the Management of Symptoms in Adults in the Last Days of Life) with regard to anticipatory prescribing which should be a reference point, and be utilised by all hospitals in Northern Ireland.

Recommendation 3 Ensure that patients at the end of life have an individualised plan of care which addresses and documents the following needs:-

- Emotional and psychological needs- Spiritual, religious and cultural needs, and- Social and practical needs.

NG31 Care of Dying adults in the last days of life states that a plan for care and treatment must be developed to meet the dying person’s own needs and wishes in relation to how their care should be managed and any treatment preferences they may want to express. This plan must include attention to symptom control (e.g. relief of pain and other discomforts) and the person’s physical, emotional, psychological, social, spiritual, cultural and religious needs.


51

http://www.professionalpalliativehub.com/sites/default/files/RPMG%20End%20of%20Life%20Guidance%202018_0.pdf

Recommendation 4Ensure that every opportunity is taken to give dying people the option to participate in advance care planning, to reflect their choices and wishes at the end of their life. This should include documenting in the patient’s care records, the preferred place to die (if known), and facilitating this wherever possible.

Recommendation 5Implement processes to ensure that communication with those close to the dying person on the use of anticipatory medicine is documented in the patient’s care record. This should include documented evidence of an individualised indication for the use of the anticipatory medication.


52

Regional guidance recognises the need for providers to work with commissioners to ensure access to an adequately resourced specialist palliative care (SPC) workforce to provide leadership, education and training, including for pre-qualifying education, and support to non-specialist front-line health and care workers. In this section, findings from the Organisational Level Audit regarding the specialist and non-specialist workforce are presented.

Notes to Priority 5: There must be prompt referral to, and input from, specialist palliative care for any patient and situation that requires this (One Chance To Get It Right).

Notes to Priority 5: [service providers must] work with commissioners and specialist palliative care professionals to ensure adequate access to specialist assessment, advice and active management. ‘Adequate’ means that service providers and commissioners are expected to ensure provision for specialist palliative medical and nursing cover routinely 9am – 5 pm seven days a week and a 24 hour telephone advice service (One Chance To Get It Right).

Ongoing education and training for all health and care staff: [….all] staff who have contact with dying people must have the skills to do this effectively and compassionately. This includes clinical and support staff (e.g. porters, reception staff and ward clerks). Those organisations that deliver such care have the prime responsibility for ensuring that the people they employ are competent to carry out their roles effectively, including facilitating and funding ongoing professional development, where this is appropriate (One Chance To Get It Right).

Workforce/specialist palliative care: Round two (2019/20) summary score

The summary score for ‘workforce/specialist palliative care’ is calculated using information collected in the Organisational Level Audit (a weighting of 1.0 is allocated unless indicated otherwise):

• does the hospital/site have access to a specialist palliative care service?• availability of face-to-face specialist palliative care service (doctor and/or nurse) 8 hours a day, 7

days a week • availability of telephone advice service (doctor and/or nurse) 24 hours a day, 7 days a week• training (weighting 0.25 each)

o end of life care training and education included in induction programmeo end of life care education and training included in mandatory/priority trainingo other training in relation to end of life careo communication skills training specifically addressing end of life care

5.5 Workforce/specialist palliative care

Workforce/specialist palliative care 5.1

53

95%

Figure 42: (H/S) Access to a Specialist Palliative Care service (n = 20)

Yes No

0

2

4

6

8

10

Figure 41: Hospital mean summary scores: Workforce/specialist palliative care (n = 18)

The range of hospital mean summary scores for ‘workforce/specialist palliative care’ is shown in figure 41. The mean value of the summary score across participating hospitals is 5.1 (n=18).

No hospitals in Northern Ireland have a face-to-face specialist care service (doctor and/or nurse) available 8 hours a day, 7 days a week (figure 43). 33% of hospitals report having a telephone specialist palliative care service (doctor and/or nurse) available 24 hours a day, 7 days a week (figure 44).


From the Organisational Level Audit, 95% of hospitals reported that they had access to a specialist palliative care service (figure 42). Figures 43 and 44 show the collated information, for face-to-face and telephone availability of the specialist palliative care team, used to create the component metrics for the summary score.

Range = 3.8 – 6.9

100%

Yes No

Figure 43: (H/S) Is the face-to-face specialist palliative care service (doctor and/or nurse)

available 8 hours a day, 7 days a week? (n = 19)

33%

67%

Yes No

Figure 44: (H/S) Is the telephone specialist palliative care service (doctor and/or nurse)

available 24 hours a day, 7 days a week? (n = 18)

54

Figures 45 to 48 give a further breakdown of the availability of specialist palliative care services on different days of the week.

Reviewing medical days of face-to-face availability, 63% of hospitals reported having availability from Monday to Friday (figure 45), whereas for nursing staff, 100% reported having Monday to Friday availability (figure 46). Seven day a week availability of medical staff for telephone advice is reported for 44% of hospitals (figure 47), for nursing staff, telephone advice availability is from Monday to Friday only in 100% of hospitals (figure 48).

The mean hours of availability for specialist palliative care doctors and nurses, face-to-face and telephone, weekdays and weekends are illustrated in figure 49. There is no weekend face-to-face availability of either doctors or nurses. Doctors are available on average 16 hours over the weekend period for telephone advice only.

Figure 49: (H/S) Mean hours available in the specialist palliative care team

Face-to-face

weekdays

(hours out of 120)

Face-to-face

weekends

(hours out of 48)

Telephone

weekdays

(hours out of 120)

Telephone

weekends

(hours out of 48)

Doctors 20 0 57 16

Nurses 37 0 37 0


63%

37%

Figure 45: (H/S) Specialist palliative care doctor availability face-to-face (n = 19)

Monday to Friday only

Monday to Saturdayonly

7 days a week

Other 100%

Figure 46: (H/S) Specialist palliative care nurse availability face-to-face (n = 19)



7 days a week

Other

56%

44%



7 days a week

Other

Figure 47: (H/S) Specialist palliative care doctor availability via telephone advice service (n = 18)

100%



7 days a week

Other

Figure 48: (H/S) Specialist palliative care nurse availability via telephone advice service (n = 19)

55

55%45%

25%

75%

100%

0%

100%

0%0%

20%40%60%80%

100%

Yes No Yes No Yes No Yes No

Induction programme(n = 20)

Mandatory/prioritytraining(n = 20)

Communication skills(n = 20)

Other training(n = 20)

Figure 50: (H/S) Training available

• 55% of hospitals report that they have end of life care training within their induction programme.

• 25% of hospitals have end of life care training within mandatory/priority training programmes.• 100% of hospitals provide communications skills training specifically addressing end of life care.• 100% of hospitals provide other forms of training in relation to end of life care (other than

those areas noted above).

Workforce indicators, and in particular vacancy rates, are a way of measuring the stability of the workforce delivering care. They also potentially indicate the availability of specialist palliative care staff as a resource. From the Organisational Level Audit, the following mean vacancy rates were reported across the specialist palliative care workforce:-

• Medical staff – 25%2 (however, of the 16 responses provided, 9 hospitals reported vacancy rates for medical staff at 13%2 and over, with 7 hospitals reporting very low or no medical staff vacancies, so considerable variation is reported).

• Nursing – 1%3, • AHPs – 0%4.

Workforce/specialist palliative care: Families’ and others’ comments

From the Case Note Review narrative responses about areas of excellent practice, 20% (29/147) of these comments related to the involvement of the specialist palliative care team.

“Early involvement of the Specialist Palliative Care Team.”

“Specialist palliative care input shows evidence of documented end of life care plan and discussions very well documented.”

“Regular review by specialist palliative care allowed for regular review and planning of care.”

Of the auditors’ comments about the learning points identified from completing the Case Note Review, 3% (5/153) related to there being delays in the referral of the patient to the specialist palliative care team.

“Palliative care team involved only for last 2 days.”

“Very late palliative care involvement.”


56

Summary: Workforce/specialist palliative care

Most hospitals (95%) have access to a specialist palliative care service. However, doctors are available face-to-face Monday to Friday in 63% of hospitals and 100% of hospitals have nurse availability Monday to Friday only, suggesting that seven day palliative care services are not yet available in a large proportion of the NHS in Northern Ireland. However, the definition of ‘adequate’ is from One Chance To Get It Right which is not endorsed in Northern Ireland at this stage.

Recommendation 6Require all Trust Boards to receive an annual end of life performance report and action plan as part of the Trust Governance framework. The report and plan should aim to improve end of life care by building upon the learning from NACEL, the regional palliative care work plan and complaints and feedback from surveys, including those from bereaved people.

Recommendation 7Work towards having specialist palliative care doctor and/or nurse telephone advice availability 24 hours a day, seven days a week. This is a part of an ongoing review of the specialist palliative care workforce in Northern Ireland, which also considers the allocation of the available resource across all settings, both face-to-face and telephone.

Recommendation 8Work towards end of life care training programmes becoming embedded as part of induction programmes and also as part of mandatory/priority training programmes in Northern Ireland.


57

6. Additional requirements in round two of NACEL

Staff Reported Measure (SRM) development

It was a contractual requirement of HQIP that the NHSBN consider the development of a Staff Reported Measure (SRM) during the second round of NACEL, as the fourth element of the audit. The full rollout of the SRM is to occur during the third round of NACEL. The rationale for developing the SRM was that staff working with patients who are approaching end of life must be properly prepared for this role and must be supported by their trust, including being equipped with the right level of skills and knowledge, and being given sufficient time and support to provide this care. Staff are also well placed to observe and judge the quality of care received by dying patients and those close to the patient. Staff experience is a vital component of the whole picture of care at the end of life that can be built from the NACEL data.

NACEL has collected information in the Organisational Level Audit on whether training was provided to staff, but the effectiveness and impact of such training is difficult to measure effectively through the Organisational Level Audit. The object of the SRM component would be to capture the wider impact of training and preparation – not just the mechanisms, but the effectiveness and outcome in relation to caring for dying people and those close to them.

The SRM was developed during the summer of 2019 and followed the process outlined below:-

1. Desk-based research occurred which identified where similar, validated staff surveys/measures were in use in the NHS.

2. Following this, a long list of questions was developed which covered three different aspects for staff who may encounter dying people in the course of their work or be involved in delivering end of life care:-

• staff member demographics;• questions directed at the individual staff member regarding their confidence and

experience in dealing with dying patients and those important to them; and• questions directed at hospital procedures and processes, including availability of training.

3. A Delphi process, based on a consensus approach, was undertaken with the NACEL Steering Group and Advisory Groups to determine a short list of questions. The process took the form of three rounds, before a short list of questions was agreed for piloting. The NACEL Steering Group took the view that narrative questions would be excluded from the SRM. With the exception of the staff demographic questions, all questions were asked with a Likert scale response. A ‘not applicable’ response was permitted.

4. In round three, the SRM will take the form of an online survey, as per the Quality Survey. The online survey is linked back to the individual organisation/submission but is not linked back to individual staff members within an organisation, and therefore remains anonymous.

5. During the summer of 2019, the SRM was piloted with 11 different sites (across 7 organisations), covering both acute and community hospital providers. NACEL project leads at the sites were requested to ask at least 20 members of staff to complete the survey. This was not just for staff who come into direct contact with the dying person and those important to them, but to staff who may come into contact with the dying as part of their work.

58

6. Additional requirements in round two of NACEL

• Guidance was circulated to the pilot sites, including which staff to approach and which areas should be covered. A month was given for all responses to be received.

• 195 responses were received from the 11 sites. • All sites were requested to feedback on a number of different areas, including the ease of use of

the online technology, the questions asked, the coverage of staff, etc. • All pilot sites were given a dashboard with the results of their findings compared to the whole

sample. • Following the pilot, the SRM has undergone a validation exercise in readiness for full rollout. The

validation exercise indicated two strong sub-scales (reflecting the two differing aspects of the SRM) and that two questions did not fit either sub-scale.

• For the full rollout of the SRM, the NACEL Steering Group has agreed that all acute providers will be requested to submit 100 staff responses, community hospitals to submit 20 responses and mental health providers to submit 20 responses.

• The SRM will be open in line with the data collection timescales for the main audit.• A new ‘staff experience’ summary score will be developed for the third round of NACEL, and the

findings from the SRM will be used to triangulate with the other elements of NACEL.

59

7. Third round of NACEL

NACEL has been commissioned by HQIP to run as an annual audit, initially for three years from 2017 to 2020. The NHSBN is in discussion with HQIP regarding a contract extension to deliver a further two years of the audit. The PHA in Northern Ireland will commission the NHS Benchmarking Network to deliver NACEL for a third round.

NACEL round three will be delivered during the 2020/21 financial year. The scope and content of NACEL is under discussion with HQIP, the funders of the audit, the NACEL Steering Group and Advisory Group following feedback from audit participants, however the content is likely to remain the same between rounds two and three.

The findings from round one and round two of NACEL have been successful in identifying key priorities for improvements in care at the end of life in acute and community hospitals in Northern Ireland, and there is evidence that the findings from the first two rounds are actively being used. The NHSBN team, together with the Co-Clinical Leads have spoken at conferences and workshops on the NACEL findings over the time period of the first two rounds.

In round three of NACEL, the following elements will be undertaken:

1. An audit for acute and community hospital providers which will run along the lines of the round two audit, that is, a reduced Case Note Review concentrating upon the key areas identified for improvement. The Quality Survey will continue to be administered to those close to the dying person, recognising that bereaved carers are well place to give feedback on the overall quality of care received. As in round two, the Case Note Review element and Quality Survey element will remain unlinked. Northern Ireland will participant in the Quality Survey for the first time in round three.

2. The introduction of a new Staff Reported Measure (see section 6). 3. The re-introduction of the trust/HB overview data specification in order to assess progress with

the ‘governance’ theme. Metrics requested will be reviewed by the NACEL Steering Group. 4. Whilst there will be a spotlight audit on end of life care provided in mental health inpatient

settings in round three of the audit, Northern Ireland will not be participating in this audit element.

At the time of publication NACEL round three has been postponed due to COVID - 19.

60

8. Glossary

Acronyms and abbreviations

CNR Case Note Review (see page 62 for definition)

DNACPR Do Not Attempt Cardiopulmonary Resuscitation

DPIA Data Protection Impact Assessment

e-ELCA End of Life Care for All - e-Learning

ESR Electronic Staff Record

GDPR General Data Protection Regulation

GMC General Medical Council

H/S Hospital/Site organisational level audit

HB Health Board (in Wales)

HDU High Dependency Unit

HQIPThe Healthcare Quality Improvement Partnership is led by a consortium of the Academy of Medical Royal Colleges, the Royal College of Nursing and National Voices

HSCBHealth and Social Care Board in Northern Ireland is a statutory organisation which commissions health and social care services for the population of Northern Ireland

ICS Integrated Care System

ICU Intensive Care Unit

IV Intravenous

NACELThe National Audit of Care at the End of Life commissioned by HQIP from NHSBN in October 2017

NCAPOP National Clinical Audit Programme and the Clinical Outcome Review Programmes

NHSBNThe NHS Benchmarking Network is the in-house benchmarking service of the NHS promoting service and quality improvement through benchmarking and sharing good practice

NICE National Institute for Clinical Health and Excellence

NMC Nursing and Midwifery Council

OLA Organisational Level Audit (see page 62 for definition)

PHAPublic Health Agency in Northern Ireland, which provides a focus on public health and wellbeing bringing together a wide range of public health functions under one organisation

QS Quality Survey (see page 63 for definition)

SPC Specialist Palliative Care

SRM Staff Reported Measure (see page 63 for definition)

61

8. Glossary

Terms used in this report

‘Anticipatory

medication’

Medication prescribed in anticipation of symptoms, designed to enable

rapid relief at whatever time the patient develops distressing symptoms.

Audit Summary The Audit Summary component of NACEL was requested from each hospital

or site and covered four key metrics; three on the overall number of deaths

within the audit period, and a final one on how many Quality Survey letters

were sent to bereaved carers by the hospital or site. Case Note Review The Case Note Review component of round one and round two of NACEL. A

set of questions completed for each death in the first two weeks of April

and May 2019 (acute hospitals) or all deaths occurring during April and May

2019 (community hospital providers).Category 1 death Definition of deaths to be included in NACEL. Category 1: It was recognised

that the patient may die - it had been recognised by the hospital staff that

the patient may die imminently (i.e. within hours or days). Life sustaining

treatments may still be being offered in parallel to end of life care.Category 2 death Definition of deaths to be included in NACEL. Category 2: The patient was

not expected to die - imminent death was not recognised or expected by

the hospital staff. However, the patient may have had a life limiting

condition or, for example, be frail, so that whilst death wasn't recognised as

being imminent, hospital staff were "not surprised" that the patient died.‘Families and

others’, ‘nominated

person’, ‘next of

kin’, ‘carer’

These terms are used interchangeably in this report to refer to ‘those

important to the dying person’ as used in One Chance To Get It Right. It is

recognised that some dying people do not have such a person.

‘Five priorities for

care’

The Five priorities for care of the dying person as set out in One Chance To

Get It Right.

‘Individualised plan

of care’

An ‘individualised plan of care’ as envisaged in NICE guidance (NG31). This

could include any form of care plan that documents an individualised plan

for care at the end of life.

‘Learning from deaths’

This is a national framework for NHS trusts (England only) on identifying,

reporting and learning from deaths in care.

‘Likert Scale’ A Likert Scale is a type of rating scale used to measure attitudes or opinions.

With this scale, respondents are asked to rate items on a level of

agreement.

‘Medical Examiners’ From April 2019, a national system of Medical Examiners was introduced (in

England and Wales) to provide greater scrutiny of deaths. The system offers

a point of contact for bereaved families to raise concerns about the care

provided to a loved one prior to death.Organisational

Level Audit

The Organisational Level Audit element of NACEL is where a set of

questions is completed at overall hospital or site level. The metrics

requested related to the financial year 2018/19.

62

8. Glossary

Terms used in this report

Project Lead The person who will act as the lead contact for this project within

participating organisations. This role will be the primary recipient of any

correspondence and will be responsible for co-ordinating the data

collection.Quality Survey The survey designed for round one of NACEL and administered once again

in round two of NACEL to capture the views of those important to the dying

person.

Staff Reported Measure

The Staff Reported Measure element of the audit, which was piloted in

round two, captures the views of staff who work closely with people who

are dying and those important to them.

Submission A hospital or site identified by the participating organisation to be audited

separately.

Sudden death Deaths which were sudden and unexpected; this included, but was not limited to, the following:

• all deaths in Accident and Emergency departments• deaths within 4 hours of admission to hospital• deaths due to a life-threatening acute condition caused by a sudden

catastrophic event, with a full escalation of treatment plan in place.

63

9. References

Department of Health. HSS(MD) 21/2014 - Advice To Health And Social Care Professionals For The

Care Of The Dying Person In The Final Days And Hours Of Life – Phasing Out Of The Liverpool Care

Pathway In Northern Ireland By 31 October 2014. 2014

DHSSP. Living Matters Dying Matters. 2010

DHSSP. Transforming Your Care. 2011

HSC Annual Commissioning Plans

HSC Advance Care Planning Summary. V9.6.15

Macmillan Cancer Support & the Public Health Agency. Your Life Your Choices.

NCHSPCS. Breaking Bad News. Regional Guidelines. 2003

NICE. Guideline NG31, Care of dying adults in the last days of life. 2015

NICE. Quality Standard 13, End of life care for adults. November 2011

NICE. Quality Standard 144, Care of dying adults in the last days of life. March 2017

PHA/HSCB. 10,000 Voices Initiative. 2015

Lets talk About https://aiihpc.org/our_work/policy-practice/lets-talk-about/

PHA/Regional Palliative Medicine Group Northern Ireland. Guidance for the Management of

Symptoms in Adults in the Last Days of Life. 2014

RQIA. Review of the Implementation of the Palliative and End of Life Care Strategy. 2016

The Leadership Alliance for the Care of Dying People. One Chance to Get it Right. Improving

people’s experience of care in the last few days and hours of life. June 2014

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https://aiihpc.org/our_work/policy-practice/lets-talk-about/

Appendix 1: Hospital score table

Key theme NI regional summary score

Recognising the possibility of imminent death (RD) -

Communication with the dying person (CDP) 7.2

Communication with families and others (CFO) 6.9

Individual plan of care (IPC) 7.1

Workforce/specialist palliative care (W) 5.1

Not every hospital has received a full set of summary scores. To receive a full set, hospitals were required to provide completed responses for the ‘workforce/specialist palliative care' summary score component indicators from the Organisational Level Audit and five or more Case Note Review responses for each component indicator.

The number of Case Note Reviews completed for each submission is included at Appendix 8.

65

Organisation and submission nameCDP CFO IPC W

7.2 6.9 7.1 5.1

Belfast Health and Social Care Trust - Cancer Centre, Belfast - - - 3.8

Belfast Health and Social Care Trust - Belfast City Hospital 6.4 7.5 7.3 3.8

Belfast Health and Social Care Trust - Royal Victoria Hospital, Belfast 8.2 6.5 6.8 3.8

Belfast Health and Social Care Trust - Mater Hospital (Excluding Mental Health), Belfast

5.9 6.8 7.0 -

Belfast Health and Social Care Trust - Musgrave Park Hospital, Belfast - - - -

Northern Health and Social Care Trust - Antrim Area Hospital 8.4 7.0 6.3 6.9

Northern Health and Social Care Trust - Causeway Hospital 6.7 6.9 5.9 6.9

Northern Health and Social Care Trust - Dalriada Hospital 3.2 5.4 7.8 6.9

Northern Health and Social Care Trust - Mid Ulster Hospital - - - 6.9

Northern Health and Social Care Trust - Inver Intermediate Care Unit - - - 6.9

Northern Health and Social Care Trust - Robinson Memorial 8.0 6.4 8.0 6.9

South Eastern Health and Social Care Trust - Ulster Hospital 7.7 6.7 7.3 5.0

South Eastern Health and Social Care Trust - Lagan Valley and DowneHospitals

8.7 7.4 7.9 5.0

Southern Health and Social Care Trust - Daisy Hill Hospital 7.5 7.1 6.8 3.8

Southern Health and Social Care Trust - Lurgan Hospital - - - 3.8

Southern Health and Social Care Trust - South Tyrone Hospital - - - 3.8

Southern Health and Social Care Trust - Craigavon Area Hospital 6.6 6.5 7.2 3.8

Western Health and Social Care Trust - Altnagelvin Hospital 7.6 7.3 7.6 5.0

Western Health and Social Care Trust - South West Acute 7.5 7.0 7.5 5.0

Western Health and Social Care Trust - Omagh Hospital 3.6 5.0 7.0 5.0

Appendix 1: Hospital score table

66

Appendix 2: Method for scoring

A scoring system was devised in round one of NACEL for England and Wales to summarise the audit under key themes. A similar summary score methodology has been adopted for round two of NACEL for Northern Ireland.

This appendix sets out the component indicators of the five key themes and an explanation of how the summary scores are calculated.

The NACEL key themes for round two were developed by the NACEL Steering Group and were discussed with the wider NACEL Advisory Group. The themes are based on the Five priorities for care:• Recognising the possibility of imminent death• Communication with the dying person • Communication with the nominated person • Individualised plan of care • Workforce/specialist palliative care

Key points on the summary scores for round two of NACEL are:-• The summary scores only contain data provided for Category 1 deaths.• Whilst Category 2 deaths are not included in the summary scores, the findings for Category 2

deaths are reported in the online benchmarking toolkit, and reference is made to Category 2 deaths throughout the round two report.

• No summary score has been calculated for the ‘recognising the possibility of imminent death’ theme, as the metrics used to calculate this summary score have been utilised in the two communication themes.

• Only indicators from one element of the audit (either Organisational Level Audit or the Case Note Review) are utilised for each theme. At least five indicators were used for each summary score, to provide granularity in the results.

67

https://members.nhsbenchmarking.nhs.uk/


Key theme Source Component indicators

Recognising the possibility of imminent death (RD)

Case note review

No summary score.

Communication with the dying person (CDP)

Case note review

5 questions on discussions with the dying person on plan of care, the possibility that the patient may die, side effects of medication (including drowsiness), hydration and nutrition.

Communication with families and others(CFO)

Case note review

6 questions on discussions with the nominated person on plan of care, notification of possible and imminent death, side effects of medication, hydration and nutrition.

Individual plan of care (IPC)

Case note review

25 questions on having a care plan that was reviewed regularly, assessment of 14 needs, the benefit of starting, stopping or continuing 6 interventions, review of hydration and nutrition status and preferred place of death.

Workforce/specialist palliative care (W)

Hospital/site overview

7 questions on specialist palliative care access, seven day availability and training.

The component indicators and scoring for each theme are as follows:

Audit element Scoring for each

component indicator

Total score for theme

Case Note Review Yes = 1*

No, but reason recorded or

N/A = 1

No and no reason recorded

= 0

*Please note, a number of

metrics are weighted as

detailed in the tables below

• Each component indicator scored for

each case note

• Total score for each case note

calculated by summing indicator scores

• Case note scores averaged (over whole

sample or hospital)

• Shown as score out of 10 (equating to

maximum available score)

Organisational

Level Audit

Yes = 1

No = 0

• Each component indicator scored for

each hospital

• Total score for each hospital calculated

by summing indictor scores

• Hospital scores averaged

• Shown as score out of 10 (equating to

maximum available score)

Methods of scoring

The basic principle for scoring for each audit element is outlined below.

68


5.2 Communication with the dying person (Source: Case Note Review)

Section Question

Scoring

Yes

No but reason

recorded and/or N/A

No and no reason

recorded


Is there documented evidence that the possibility that the patient may die had been discussed with the patient?

1 1 0

Individualised end of life care planning - The patient

Is there documented evidence that the patient was involved in discussing the individualised plan of care?

1 1 0

Individualised end of life care planning - Symptom management

Is there documented evidence that the possibility of drowsiness, if likely, as a result of prescribed medications, was discussed with the patient?

1 1 0

Individualised end of life care planning - Drinking and assisted hydration

Is there documented evidence that a discussion about the risks and benefits of hydration options was undertaken with the patient once the dying phase was recognised?

1 1 0

Individualised end of life care planning - Eating and assisted nutrition

Is there documented evidence that a discussion about the risks and benefits of nutrition options was undertaken with the patient once the dying phase was recognised?

1 1 0

Maximum possible score: 5

5.3 Communication with families and others (Source: Case Note Review)

Section Question

Scoring

Yes

No but reason

recorded and/or N/A

No and no reason

recorded


Is there documented evidence that the possibility that the patient may die had been discussed with the nominated person(s)?

1 1 0


Is there documented evidence that the nominated person(s) were notified that the patient was about to die?

1 1 0


Is there documented evidence that the nominated person(s) was involved in discussing an individualised plan of care for the patient?

1 1 0

Individualised end of life care planning - Symptom management

Is there documented evidence that the possibility of drowsiness, if likely, as a result of prescribed medications, was discussed with the nominated person(s)?

0.5 0.5 0


Is there documented evidence that a discussion about the risks and benefits of hydration options was undertaken with the nominated person(s)?

1 1 0


Is there documented evidence that a discussion about the risks and benefits of nutrition options was undertaken with the nominated person(s)?

0.5 0.5 0


69


5.4 Individualised plan of care (Source: Case Note Review)

Section Question

Scoring

Yes

No but reason

recorded and/or N/A

No and no reason

recorded

Individualised end of life care planning - Advance care planning

Was there documented evidence of the preferred place of death as indicated by the patient?

1 - 0


Is there documented evidence that the patient who was dying had an individualised plan of care addressing their end of life care needs?

0.5 - 0


Is there documented evidence that the patient and their individualised plan of care were reviewed regularly?

0.5 0.5 0


Is there documented evidence of an assessment of the following needs:

agitation/delirium 0.25 0.25 0

dyspnoea/breathing difficulty 0.25 0.25 0

nausea/vomiting 0.25 0.25 0

pain 0.25 0.25 0

noisy breathing/death rattle 0.25 0.25 0

anxiety/distress 0.25 0.25 0

bladder function 0.25 0.25 0

bowel function 0.25 0.25 0

pressure areas 0.25 0.25 0

hygiene requirements 0.25 0.25 0

mouth care 0.25 0.25 0

emotional/psychological needs 0.25 0.25 0

spiritual/religious/cultural needs 0.25 0.25 0

social/practical needs 0.25 0.25 0


Was the benefit of starting, stopping or continuing the following interventions documented as being reviewed in the patient's plan of care?

routine recording of vital signs 0.25 0.25 0

blood sugar monitoring 0.25 0.25 0

the administration of oxygen 0.25 0.25 0

the administration of antibiotics 0.25 0.25 0

routine blood tests 0.25 0.25 0

other medication 0.25 0.25 0


Is there documented evidence that the patient's hydration status was assessed daily once the dying phase was recognised?

1 - 0


Is there documented evidence that the patient's nutrition status was reviewed regularly once the dying phase was recognised?

1 - 0


70

5.5 Workforce/specialist palliative care (Source: Hospital/site overview)

Section QuestionScoring

Yes No

Specialist palliative care workforce

Does your hospital/site have access to a Specialist Palliative Care service?

1 0


Is the face to face specialist palliative care service (doctor and/or nurse) available 8 hours a day, 7 days a week?

1 0


Is the telephone specialist palliative care service (doctor and/or nurse) available 24 hours a day, 7 days a week?

1 0

Staff training for all hospital/site staff

In the period between 1st April 2018 and 31st March 2019 was the following available:

End of life care training included in induction programme

0.25 0

End of life care training included in mandatory/priority training

0.25 0

Communication skills training specifically addressing end of life care

0.25 0

Other training in relation to end of life care 0.25 0



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Age profile All deaths Category 1 Category 2

18-64 11.47% 11.11% 15.15%

65-74 13.60% 13.74% 12.12%

75-84 33.60% 34.80% 21.21%

85-94 36.27% 34.80% 51.52%

95+ 5.07% 5.56% 0.00%

Number of responses 375 342 33

Appendix 3: Patient demographics

Age All deaths Category 1 Category 2

Range 34 - 103 35 - 103 34 - 93

Mean 80 80 79

Median 82 82 85


Gender profile All deaths Category 1 Category 2

Male 49.60% 49.71% 48.48%

Female 50.40% 50.29% 51.52%

Other 0.00% 0.00% 0.00%


Usual place of residency All deaths Category 1 Category 2

Home 75.73% 76.02% 72.73%

Residential home 3.73% 3.22% 9.09%

Nursing home 18.40% 18.71% 15.15%

Prison 0.00% 0.00% 0.00%

No fixed abode 0.00% 0.00% 0.00%

NHS other hospital provider 0.80% 0.58% 3.03%

Other 1.33% 1.46% 0.00%


Ethnicity profile All deaths Category 1 Category 2

White 43.50% 43.86% 39.40%

Mixed 0.00% 0.00% 0.00%

Asian or Asian British 0.00% 0.00% 0.00%

Black or Black British 0.00% 0.00% 0.00%

Other Ethnic Groups 0.53% 0.58% 0.00%

Not stated 56.00% 55.56% 60.60%


72

Primary cause of death All deaths Category 1 Category 2

Cancer 17.96% 18.48% 12.50%

Chronic respiratory disease 7.24% 7.33% 6.25%

Dementia 4.29% 4.69% 0.00%

Heart failure 6.97% 6.74% 9.38%

Neurological conditions 1.61% 1.76% 0.00%

Pneumonia 27.08% 26.98% 28.13%

Renal failure 1.61% 1.76% 0.00%

Stroke 6.43% 6.45% 6.25%

Other 26.27% 25.22% 37.50%

No access to death certificate 0.54% 0.59% 0.00%


Appendix 4: Characteristics of deaths in hospitals

Day of death All deaths Category 1 Category 2

Monday 14.93% 14.91% 15.15%

Tuesday 12.53% 12.28% 15.15%

Wednesday 14.67% 14.62% 15.15%

Thursday 16.80% 17.25% 12.12%

Friday 17.33% 17.54% 15.15%

Saturday 12.00% 12.28% 9.09%

Sunday 11.73% 11.11% 18.18%


Time of death All deaths Category 1 Category 2

00:00 – 06:00 25.33% 25.44% 24.24%

06:01 – 12:00 26.13% 25.15% 36.36%

12:01 – 18:00 21.07% 20.76% 24.24%

18:01 – 23:59 27.47% 28.65% 15.15%


Length of stay profile All deaths Category 1 Category 2

0 – 1 days 9.14% 9.41% 6.25%

2 – 10 days 38.17% 36.76% 53.13%

11 – 20 days 27.69% 27.65% 28.13%

21 – 30 days 11.83% 12.94% 0.00%

31 – 40 days 3.49% 3.24% 6.25%

41 – 50 days 2.69% 2.65% 3.13%

51 – 60 days 2.15% 2.35% 0.00%

61 – 70 days 0.81% 0.88% 0.00%

71 – 80 days 1.34% 1.47% 0.00%

81 – 90 days 0.27% 0.29% 0.00%

90+ 2.42% 2.35% 3.13%


73

Number of deaths (with exclusions) Average per submission

Number of deaths within the audit period (excl. deaths in A&E and within 4 hours of admission) as a percentage of all deaths in the audit period

97.41%

Number of responses 19

Appendix 5: Audit summary

Number of deaths in A&E Average per submission

Number of deaths in A&E within the audit period as a percentage of all deaths in the audit period

2.14%


Number of deaths within 4 hours of admission Average per submission

Number of deaths within 4 hours of admission within the audit period as a percentage of all deaths in the audit period

0.45%


74

Appendix 6: Indicators included in the report


Recognising the possibility of imminent death: Chart figures

Page Figure Section Question Response options All deaths Category

1Category

2

29 1CNR – Patient demographics

Q2. There are two categories of deaths for patients included in the audit. Indicate whether for this patient:

Category 1 91.20% - -

Category 2 8.80% - -Number of responses

375 - -

30 2

CNR –Recognising the possibility of imminent death

Time from recognition of dying to death (mean) Q3. + Q4. Date and time of recognition of dying & Q5. + Q6. Date and time of death (days)

1 day - 22.64% -

2 days - 12.89% -

3 days - 10.06% -

4 days - 5.66% -

5 days - 7.55% -

6 days - 2.20% -

7 days - 4.40% -

8 days - 5.03% -

9 days - 5.66% -

10 days - 2.52% -

11 days - 4.09% -

12 days - 1.26% -

13 days - 2.20% -

14 days - 1.89% -

14 + days - 11.95% -Number of responses

-318

-

30 3


Time from recognition of dying to death (mean) Q3. + Q4. Date and time of recognition of dying & Q5. + Q6. Date and time of death (hours – up to 24)

0 - 4 hours - 23.61% -

4 - 8 hours - 20.83% -

8 - 12 hours - 15.28% -

12 - 16 hours - 18.06% -

16 - 20 hours - 16.67% -

20 - 24 hours - 5.56% -Number of responses

-72

-

30 4


Time from admission to recognition of dying (mean) Q1. + Q2. Date and time of the final admission & Q3. + Q4. Date and time of recognition of dying

1 day - 32.39% -

2 days - 9.75% -

3 days - 4.40% -

4 days - 5.35% -

5 days - 4.40% -

6 days - 5.03% -

7 days - 4.40% -

8 days - 3.46% -

9 days - 1.89% -

10 days - 2.20% -

11 days - 1.57% -

12 days - 2.83% -

13 days - 2.83% -

14 days - 0.31% -

14 + days - 19.18% -

Number of responses

-318

-

75



Recognising the possibility of imminent death: Chart figures

Page Figure Section Question Response optionsAll

deaths Category

1Category

2

31 5


Time from admission to recognition of dying (mean) Q1. + Q3. Date and time of admission (Q1 + Q2) to recognition of dying & Q5. + Q6 (hours – up to 24)

0 - 4 hours - 55.34% -

4 - 8 hours - 14.56% -

8 - 12 hours - 5.83% -

12 - 16 hours - 11.65% -

16 - 20 hours - 7.77% -

20 - 24 hours - 4.85% -

Number of responses

-103

-

31 6-7


Time from admission to death profile (mean) Q1. + Q2. Date and time of the final admission & Q5. + Q6. Date and time of death

0 - 1 days 9.14% 9.41% 6.25%

2 - 10 days 38.17% 36.76% 53.13%

11 - 20 days 27.69% 27.65% 28.13%

21 - 30 days 11.83% 12.94% 0.00%

31 - 40 days 3.49% 3.24% 6.25%

41 - 50 days 2.69% 2.65% 3.13%

51 - 60 days 2.15% 2.35% 0.00%

61 - 70 days 0.81% 0.88% 0.00%

71 - 80 days 1.34% 1.47% 0.00%

81 - 90 days 0.27% 0.29% 0.00%

90+ 2.42% 2.35% 3.13%

Number of responses

372 340 32

Recognising the possibility of imminent death: Narrative figures

Page Note Section Question Response optionsAll

deaths Category

1Category

2

29 1


Time from recognition of dying to death (median) Q3. + Q4. Date and time of recognition of dying & Q5. + Q6. Date and time of death

Hours - 88.58 -

Number of responses - 318 -

76



Communication with the dying person: Chart figures

Page Figure Section Question Response options All deathsCategory

1Category

2

34 9


Q7. Is there documented evidence that the possibility that the patient may die had been discussed with the patient?

Yes - 23.10% -

No but reason recorded

- 61.99% -


- 14.91% -


34 10

CNR –Individualised end of life care planning

Q5. Is there documented evidence that the patient was involved in discussing the individualised plan of care?

Yes 23.79% 24.56% 0.00%No but reason recorded

63.45% 62.99% 77.77%


12.76% 12.46% 22.22%


35 11


Q13. Is there documented evidence that the possibility of drowsiness, if likely, as a result of prescribed medications, was discussed with the patient?

Yes 2.70% 2.93% 0.00%No but reason recorded/N/A

57.84% 56.89% 68.96%


39.46% 40.18% 31.03%


35 12


Q19. Is there documented evidence that a discussion about the risks and benefits of hydration options was undertaken with the patient once the dying phase was recognised?

Yes - 6.45% -No but reason recorded/N/A

- 65.98% -


- 27.57% -


35 13


Q23. Is there documented evidence that a discussion about the risks and benefits of nutrition options was undertaken with the patient once the dying phase was recognised?

Yes - 5.85% -

No but reason recorded/N/A

- 65.20% -


- 28.95% -


77



Communication with families and others: Chart figures


deathsCategory

1Category

2

38 15


Q8. Is there documented evidence that the possibility that the patient may die had been discussed with the nominated person(s)?

Yes - 96.49% -No but reason recorded

- 1.46% -


- 2.05% -


38 16


Q9. Is there documented evidence that the nominated person(s) were notified that the patient was about to die?


- 35.96% -


- 6.73% -


39 17


Q6. Is there documented evidence that the nominated person(s) was involved in discussing an individualised plan of care for the patient?

Yes 95.17% 95.37% 88.89%No but reason recorded

1.72% 1.78% 0.00%


3.10% 2.85% 11.11%


39 18


Q14. Is there documented evidence that the possibility of drowsiness, if likely, as a result of prescribed medications, was discussed with the nominated person(s)?


14.63% 11.14% 57.14%


78.05% 81.23% 39.29%


39 19


Q20. Is there documented evidence that a discussion about the risks and benefits of hydration options was undertaken with the nominated person(s)?


- 11.11% -


- 54.68% -


40 20


Q24. Is there documented evidence that a discussion about the risks and benefits of nutrition options was undertaken with the nominated person(s)?


- 12.87% -


- 66.08% -


78



Individualised plan of care: Chart figures


deathsCategory

1Category

2

43 22


Q3. Is there documented evidence that the patient who was dying had an individualised plan of care addressing their end of life care needs?

Yes 78.02% 82.46% 29.03%

No 21.98% 17.54% 70.97%


44 23


Q4. Is there documented evidence that the patient and their individualised plan of care were reviewed regularly?

Yes 90.69% 90.75% 88.89%Patient died before a review was necessary

0.69% 8.54% 11.11%

No 8.62% 0.71% 0.00%


44 24


Q2. Was there documented evidence of the preferred place of death as indicated by the patient?

Yes 10.70% 10.56% 12.12%

No 89.30% 89.44% 87.88


44 25


Q18. Is there documented evidence that the patient's hydration status was assessed daily once the dying phase was recognised?

Yes - 77.06% -

No - 22.94% -


44 26


Q22. Is there documented evidence that the patient's nutrition status was reviewed regularly once the dying phase was recognised?

Yes - 60.65% -

No - 39.35% -


45 27


Q21. Is there documented evidence that the patient was supported to drink as long as they were able and wished to do so?

Yes - 65.10% -

No - 27.57% -

N/A - 7.33% -


45 28


Q25. Is there documented evidence that the patient was supported to eat as long as they were able to and wished to do so?

Yes - 59.65% -

No - 30.99% -

N/A - 9.36% -


45 29


Q23. In the period between the recognition that the patient might die and death, were any of the following interventions documented as being reviewed in the patient's plan of care?

routine recording of vital signs

Yes - 72.81% -

No - 26.02% -

N/A - 1.17% -


routine blood tests

Yes - 57.31% -

No - 39.77% -

N/A - 2.92% -


blood sugar monitoring

Yes - 17.54% -

No - 17.25% -

N/A - 65.20% -


79





deathsCategory

1Category

2

45 29


the administration of oxygen

Yes - 56.30% -

No - 23.46% -

N/A - 20.23% -


the administration of antibiotics

Yes - 60.23% -

No - 19.88% -

N/A - 19.88% -


other medication

Yes - 67.76% -

No - 30.15% -

N/A - 2.09% -


46 30


Q7. Is there documented evidence of an assessment of the following needs:

Pressure areas

Yes 96.79% 97.36% 90.91%No 2.67% 2.35% 6.06%N/A 0.53% 0.29% 3.03%Number of responses 374 341 33

Hygiene requirements


Bladder function


Pain


Bowel function


Dyspnoea/breathing difficulty


Mouth care


Agitation/deliriumYes 85.29% 86.80% 69.70%No 11.76% 11.14% 18.18%N/A 2.94% 2.05% 12.12%Number of responses 374 341 33

80





deaths Category

1Category

2

46 30


Q7. Is there documented evidence of an assessment of the following needs:

Anxiety/distress


Noisy breathing/death rattle


Nausea/vomiting


Social/practical needs


Emotional/psychological needs


Spiritual/religious/cultural needs


47 31


Q1. Is there documented evidence that the patient had participated in advance care planning prior to the recognition that the patient might die, and had their wishes recorded?

Yes, prior to admission 3.21% 2.93% 6.06%Yes, during the final admission

4.55% 4.69% 3.03%

No advance care plan 88.24% 88.27% 87.88%N/A 4.01% 4.11% 3.03%Number of responses 374 341 33

47 32


Q9. Is there documented evidence that anticipatory medication was prescribed for symptoms likely to occur in the last days of life?

Yes, prescribed & administered

- 11.70% -

Yes, prescribed but not used

- 78.95% -

No - 8.48% -N/A - 0.88% -


47 33


Q10. Is there documented evidence that an indication for the use of the medication was included within the prescription?

Yes, for all medications prescribed

- 30.97% -

Yes, for some medications prescribed

- 26.77% -

No - 42.26% -Number of responses - 310 -

81





deaths Category

1Category

2

48 34


Q11. Is there documented evidence that a discussion about the use of anticipatory medication was undertaken with the patient?


- 62.91% -

No & no reason recorded

- 18.06% -


48 35


Q12. Is there documented evidence that a discussion about the use of anticipatory medication was undertaken with the nominated person(s)?


- 4.52% -


- 21.61% -


48 36


Q15. Is there documented evidence that the patient had a continual infusion of medications, for example via a syringe pump?

Yes 50.53% 53.51% 18.75%No 49.47% 46.49% 81.25%Number of responses 374 342 32

49 37


Q16. Is there evidence of a documented discussion with the patient on the need for a syringe pump?


58.21% 58.48% 50.00%


14.81% 14.75% 16.67%


49 38


Q17. Is there evidence of a documented discussion with the nominated person on the need for a syringe pump?


5.30% 5.47% 0.00%


14.29% 14.75% 0.00%


49 39

H/S –Anticipatory prescribing

Does your hospital have guidelines for anticipatory prescribing which specifically requires medication to have individualised indications for use, dosage and route of administration?

Yes 100.00% - -No 0.00% - -Number of responses 20 - -

49 40

H/S –Anticipatory prescribing

Do the hospital guidelines include guidance on anticipatory prescribing for patients transferring from hospital to home or care home to die?

Yes 75.00% - -No 25.00% - -Number of responses 20 - -

82


5.5 Workforce/Specialist Palliative Care

Workforce/specialist palliative care: Chart figuresPage Figure Section Question Response options NI region

54 42

H/S –Specialist Palliative Care workforce

Does your hospital/site have access to a Specialist Palliative Care service?

Yes 95.00%

No 5.00%

Number of responses20

54 43


Is the face-to-face specialist palliative service (doctor and/or nurse) available 8 hours a day, 7 days a week?

Yes 0.00%No 100.00%


54 44


Is the telephone specialist palliative service (doctor and/or nurse) available 24 hours a day, 7 days a week?

Yes 33.33%No 66.67%


55 45


Specialist Palliative Care Doctor face-to-face availability

Monday to Friday only 63.16%Monday to Saturday only 0.00%7 days a week 0.00%Other 36.84%Number of responses 19

55 46


Specialist Palliative Care Nurse face-to-face availability


55 47


Specialist Palliative Care Doctor telephone availability


55 48


Specialist Palliative Care Nurse telephone availability


55 49


Doctor face-to-face weekday hours of availability

- 20.25


Doctor face-to-face weekend hours of availability

- 0


Doctor telephone weekday hours of availability

- 57.05


Doctor telephone weekend hours of availability

- 16


Nurse face-to-face weekday hours of availability

- 36.84


Nurse face-to-face weekend hours of availability

- 0

Number of responses 19Nurse telephone weekday hours of availability

- 36.97Number of responses 19

Nurse telephone weekend hours of availability

- 0Number of responses 19

83


5.5 Workforce/Specialist Palliative Care

Workforce/specialist palliative care: Chart figures

Page Figure Section Question Response options NI region

56 50H/S – Specialist Palliative Care workforce

In the period between 1st April 2018 and 31st March 2019 was the following available:

Induction programme

Yes 55.00%

No 45.00%


Mandatory/priority training

Yes 25.00%

No 75.00%


Communication skillsYes 100.00%

No 0.00%Number of responses 20

Other trainingYes 100.00%

No 0.00%Number of responses 20

Workforce/specialist palliative care: Narrative figures

Page Note Section Question Response options NI region


Medical staff vacancies in the SPC team (PAs)

- 25%



Nursing staff vacancies in the SPC team (WTE)

- 1%



AHP staff vacancies in the SPC team (WTE)

- 0%


84

Name Title Representing

Dr Suzanne Kite Co-Clinical Lead, NACEL NACEL

Elizabeth Rees Co-Clinical Lead, NACEL NACEL

Dr Anushta Sivananthan Mental Health Clinical Lead, NACEL NACEL

Claire Holditch Director NHS Benchmarking Network

Debbie Hibbert Programme Manager NHS Benchmarking Network

Professor Mike BennettSt Gemma’s Professor of Palliative Medicine, Academic Unit of Palliative Care

University of Leeds

Amanda Cheesley Professional Lead for End of Life Care Royal College of Nursing

Gloria Clark Project Manager The Patients Association

Dr Joe Cosgrove Consultant AnaesthetistRoyal College of Anaesthetists/Faculty of Intensive Care Medicine

Dr Sarah Cox Consultant in Palliative Care Royal College of Physicians

Andrew Dickman PharmacistAssociation of Supportive and Palliative Care Pharmacists

Carolyn Doyle Professional Lead for End of Life Care Royal College of Nursing

Professor John EllershawDirector of the Palliative Care Institute, University of Liverpool

Association for Palliative Medicine

Dr Premila Fade Consultant Geriatrician British Geriatrics Society

Sherree Fagge End of Life Care Lead NHS England/Improvement

Annette FurleyEnd of Life Doula/Member of NICE guideline committee

NACEL lay representative

Corrina Grimes AHP Consultant Northern Ireland Public Health Agency

Dr Melanie Jefferson Acting Clinical Lead for End of Life Care NHS Wales

Dr Di Laverty Chair National Nurses Group (Palliative Care)

Giselle Martin-Dominguez Professional Lead for End of Life Care Royal College of Nursing

Dr Catherine Millington-Sanders

General Practitioner Royal College of General Practitioners

Caroline NicholsonSenior Clinical Lecturer, Supportive and End of Life Care

British Geriatrics Society

Ann Ford End of Life Lead Care Quality Commission

85

Appendix 7: Steering Group, Advisory Group and Audit Team

The National Audit of Care at the End of Life Steering Group


Tina StrackAssociate Director, Quality & Improvement

Healthcare Quality Improvement Partnership (HQIP)

Kevin Tromans Chaplain College of Healthcare Chaplains

Diane WalkerPalliative Care in Partnership Macmillan Programme Manager

Northern Ireland Public Health Agency

Professor Bee WeeNational Clinical Director for End of Life Care

NHS England/Improvement

86

The National Audit of Care at the End of Life Steering Group (continued)

The National Audit of Care at the End of Life Advisory Group


Dr Amit Arora Consultant Geriatrician University Hospital of North Midlands

Adrienne Betteley Specialist Advisor for End of Life Care Macmillan Cancer Care

Jennifer Beveridge Analyst, Uptake and ImpactThe National Institute for Health and Care Excellence

Professor Adrian BlundellConsultant and Honorary Associate Professor in the Medicine of Older People

University of Nottingham

Dr David Calvin Specialist Palliative Care Service Lead Southern Health and Social Care Trust

Dr Sally Carding Consultant in Palliative Medicine Sue Ryder

Dr John Chambers Consultant in Palliative Medicine Northampton General Hospital

Leighton CoombsSenior Programme Analyst, Adoption & Impact

The National Institute for Health and Care Excellence

Becky Cooper Assistant Director, Palliative CareNorfolk Community Health and Care NHS Trust

Dr Thomas Cowling

Assistant Professor, Department of Health Services Research and PolicyFaculty of Public Health and PolicyLondon School of Hygiene and Tropical Medicine

Royal College of Surgeons

Susan Dewar District Nurse Sussex Community NHS Foundation Trust

Vivien Dunne Project ManagerHealthcare Quality Improvement Partnership (HQIP)

Ray Elder Strategic Lead Palliative CareSouth Eastern Health and Social Care Trust

Carol GrayStrategic Lead for Palliative and End of Life Care

Torbay and South Devon NHS Foundation Trust

Dr Paul Hopper Consultant PsychogeriatricianCentral and North West London NHS Foundation Trust



Johanna Kuila Policy Manager – Education Policy General Medical Council

Jean Maguire Macmillan Nurse Team Leader Belfast Health and Social Care Trust

Dr Cartriona MaylandYorkshire Cancer Research (YCR) Senior Clinical Research Fellow

University of Sheffield

Bernie Michaelides Head of Intermediate Care/Lead Nurse Western Health and Social Care Trust

Dr Ollie MintonMacmillan Consultant and Honorary Senior Lecturer in Palliative Medicine

St George’s Healthcare NHS Foundation Trust

Dr Paul Perkins Chief Medical Director Sue Ryder

John Powell End of Life LeadAssociation of Directors of Adult Social Services (ADASS)

Dr Amy Profitt Executive Secretary Association of Palliative Medicine

Charlotte RockRegional co-clinical lead for EoLC/Palliative Care for Yorkshire & the Humber/Palliative Care Lead Nurse

Harrogate and District NHS Foundation Trust

Dr Joy Ross Consultant in Palliative Medicine St Christopher's Hospice

Lucie Rudd End of Life Specialist Advisor Macmillan Cancer Care

Dr Rebekah SchiffConsultant Geriatrician and General Medicine/Service Lead Ageing and Health

Guys and St Thomas’ NHS Foundation Trust

Veronica SnowPalliative Care Implementation Board -Wales

Powys University Health Board

Lucy Sutton End of Life Care Lead Health Education England

Dr Elizabeth Teale

Clinical Senior Lecturer and Consultant in Elderly Care Medicine, Academic Unit of Elderly Care and Rehabilitation, University of Leeds

Bradford Institute for Health Research

Dr Grahame Tosh Executive Medical Director Marie Curie Cancer Care

Jessica Watkin Policy Manager – Standards and Ethics General Medical Council

Dr Victoria Wheatley Consultant in Palliative Care Cwm Taf University Health Board

Dr Carole Walford Chief Clinical Officer Hospice UK

87

The National Audit of Care at the End of Life Advisory Group (continued)


88

The National Audit of Care at the End of Life Audit Team


Claire Holditch Director NHS Benchmarking Network

Debbie Hibbert Programme Manager NHS Benchmarking Network

Jessica Grantham Technical Project Manager NHS Benchmarking Network

Jessica Walsh Project Manager NHS Benchmarking Network

Joylin Brockett Assistant Project Manager NHS Benchmarking Network

Amy Fokinther Project Coordinator NHS Benchmarking Network


89

Appendix 8: Audit participation

Organisation and submission name Peer group Site CNR

Belfast Health and Social Care Trust - Belfast City Hospital Acute ✓ 24

Belfast Health and Social Care Trust - Cancer Centre Acute ✓ 4

Belfast Health and Social Care Trust - Mater Hospital (Excluding Mental

Health)Acute ✓ 19

Belfast Health and Social Care Trust - Musgrave Park Hospital Acute ✓ 2

Belfast Health and Social Care Trust - Royal Victoria Hospital Acute ✓ 40

Northern Health and Social Care Trust - Antrim Area Hospital Acute ✓ 40

Northern Health and Social Care Trust - Causeway Hospital Acute ✓ 31

Northern Health and Social Care Trust - Dalriada Hospital Community ✓ 6

Northern Health and Social Care Trust - Inver Intermediate Care Unit Community ✓ 3

Northern Health and Social Care Trust - Mid Ulster Hospital Community ✓ 1

Northern Health and Social Care Trust - Robinson Memorial Community ✓ 9

South Eastern Health and Social Care Trust - Lagan Valley and Downe

HospitalsAcute ✓ 14

South Eastern Health and Social Care Trust - Ulster Hospital Acute ✓ 37

Southern Health and Social Care Trust - Craigavon Area Hospital Acute ✓ 40

Southern Health and Social Care Trust - Daisy Hill Hospital Acute ✓ 24

Southern Health and Social Care Trust - Lurgan Hospital Community ✓ 3

Southern Health and Social Care Trust - South Tyrone Hospital Community ✓ 6

Western Health and Social Care Trust - Altnagelvin Hospital Acute ✓ 40

Western Health and Social Care Trust - South West Acute Acute ✓ 23

Western Health and Social Care Trust - Omagh Hospital Community ✓ 9

national audit of care at the end of life · end of life (nacel) in northern ireland. the one...

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