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Coventry and Warwickshire Unified Advance Care Planning Policy for Adults FINAL June 2013

Care And Support Towards Life’s End Coventry and Warwickshire

COVENTRY AND WARWICKSHIRE UNIFIED ADVANCE CARE PLANNING (ACP) POLICY FOR ADULTS

This organisation’s intranet holds the current approved document.

Notice to staff using a paper copy of this document: Staff must ensure that they are using the most up-to-date document to guide their practice and must check that the

version number of the paper copy matches that of the one on the intranet.

Version: FINAL VERSION

Replacing document: NEW

Ratifying body: Coventry and Warwickshire End of Life Care Provider Forum

Date ratified: Ratified on 21 June 2013

Date for review: July 2015

Care And Support Towards Life’s End

Coventry and Warwickshire

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Coventry and Warwickshire Unified Advance Care Planning Policy for Adults FINAL June 2013

VERSION CONTROL

Number assigned to document:

Document status FINAL

Version 2.0

DOCUMENT CHANGE HISTORY

Version Date Comments

1.0 05.10.12 DRAFT

2.0 05.06.13 FINAL

Foreword This policy has been developed as part of a work-stream established by the Coventry and Warwickshire End of Life Care Provider Forum for the benefit of individuals residing in Coventry and Warwickshire, their carers and the professionals supporting them. The development of this policy has involved close collaborative working over a period of 2 years with representation from organisations and providers of health and social care within Coventry and Warwickshire. The names of the ‘Coventry and Warwickshire Unified Advance Care Planning (ACP) Policy For Adults’ Working Group’ are named in Section 21.0. All those other individuals who have supported with developing this policy are listed in appendices 2 – 6 at the end of this policy. Users gave their feedback about the advance care planning process and documentation during the West Midlands (South) Health Innovation and Education Cluster (HIEC) advance care planning project. Additional feedback regarding advance care planning documentation was sought from health and social care professionals at a multi-disciplinary workshop held in April 2012. Support for the development of this policy was received from the Arden Clinical Senate on 7th June 2012 and subsequently on 6th September 2012 after the process was presented to all those in attendance on these dates.

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Coventry and Warwickshire Unified Advance Care Planning Policy for Adults FINAL June 2013

CONTENTS SECTION DESCRIPTION PAGE 1.0 INTRODUCTION 5 2.0 DEFINITIONS 7 3.0 PURPOSE 8 4.0 AUDIENCE 9 5.0 ASSOCIATED DOCUMENTS 9 6.0 RESPONSIBILITIES / DUTIES 10 7.0 PROCESS FOR ADVANCE CARE PLANNING 12 7.1 Individuals seeking to engage with ACP 12 7.2 Identifying individuals likely to be within the last year (or so) of life 12 7.3 Identifying individuals who will benefit from advance care planning 13 8.0 OFFERING ADVANCE CARE PLANNING 14 8.1 Key points regarding ACP 14 9.0 PORTFOLIO OF RECOMMENDED TOOLS AND DOCUMENTS 14 9.1 Suitable for health and social care professionals 14 9.2 Patient information leaflets 15 9.3 Hand-held record of advance care planning discussions for

individuals 15

9.4 Documenting the individual’s preferences in the health or social care record

16

9.5 Other useful tools for health and social care professionals to consider with individuals

16

10.0 DISCUSSING POSSIBLE FUTURE CARE OPTIONS 16 11.0 DOCUMENTING AN INDIVIDUAL’S FUTURE CARE PREFERENCES 17 11.4 Preferred Priorities for Care (PPC) Tool 18 11.5 Advance Decision to Refuse Treatment (ADRT) Tool 18 11.6 Do Not Attempt Cardio-Pulmonary Resuscitation (CPR) decisions 18 11.7 The ‘Greensleeves’ plastic wallet 19 12.0 WEST MIDLANDS AMBULANCE SERVICE 19 13.0 COMMUNICATING CARE PREFERENCES TO THE MULTI-

PROFESSIONAL TEAM 19

13.4 Patient-held documentation 20 13.5 Communicating an individual’s care preferences to carers 20 13.6 Written communication to other professionals 20 13.7 Electronic communication to other professionals 20 13.8 Verbal communication to other care professionals 21 13.9 Reviewing and updating information 21 14.0 RECORDING PREFERENCES CONTEMPORANEOUSLY IN A CARE

RECORD 21

15.0 TRAINING AND AWARENESS 21 16.0 DOCUMENT MANAGEMENT 22 17.0 MONITORING AND GOVERNANCE 22 18.0 CONFIDENTIALITY AND DATA PROTECTION 22 19.0 EQUALITY AND DIVERSITY 22 20.0 AUDIT 22 21.0 KEY INDIVIDUALS INVOLVED WITH DEVELOPING THIS DOCUMENT 23 22.0 REFERENCES 24

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Coventry and Warwickshire Unified Advance Care Planning Policy for Adults FINAL June 2013

APPENDICES APPENDIX TITLE: PAGE Appendix 1 Flow diagram for Advance Care Planning in Coventry and

Warwickshire with hyperlinks to all recommended resources for individuals and their relatives, and for health and social care professionals

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Appendix 2 Coventry and Warwickshire ACP Steering Group 29 Appendix 3 WM(S) HIEC ACP project team 29 Appendix 4 SHA-funded Coventry and Warwickshire Community ACP project team 29 Appendix 5 Coventry and Warwickshire End of Life Care (‘CASTLE’) Provider forum 30 Appendix 6 Acknowledgements 31

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Coventry and Warwickshire Unified Advance Care Planning Policy for Adults FINAL June 2013

1.0 INTRODUCTION

1.1 In April 2011 NHS Coventry and NHS Warwickshire formed the Arden Cluster to commission health services in Coventry and Warwickshire for the population of 910,000. This policy aims to streamline the process of advance care planning (ACP) for the benefit of individuals residing in Coventry and Warwickshire, aiming to improve coordination and communication between multi-professional teams across organisational boundaries, with a particular emphasis on improving end of life care. 1.2 The National End of Life Care Programme1 defines ACP as a process of discussion between an individual and their care provider irrespective of discipline. ACP enables a person’s preferences to be identified in the context of an anticipated deterioration in their condition. With the individual’s agreement it is recommended that this discussion is documented, regularly reviewed and communicated to key persons involved in their care. 1.3 The National End of Life Care Strategy: “Promoting high quality care for all adults at the end of life” July 2008 includes the following key elements of an end of life care pathway2:

Step 1 Discussions as the end of life approaches; Step 2 Assessment, care planning and review; Step 3 Coordination of care for individual patients; Step 4 Delivery of high quality services in different settings; Step 5 Care in the last days of life; and Step 6 Care after death.

1.4 ACP discussions may take place during Step 2 and are relevant for steps 3, 4, 5 and 6:-

1.5 The National Institute for Health and Clinical Excellence “End of life care for adults quality standards” number 3 states: “People approaching the end of life are offered comprehensive holistic assessments in response to their changing needs and preferences, with the opportunity to discuss, develop and review a personalised care plan for current and future support and treatment”3. 1.6 The General Medical Council “Consent guidance: patients and doctors making decisions together” dated 2008 paragraphs 57 – 58 and General Medical Council guidance “Treatment and care towards the end of life: Good practice in decision-making” July 2010 paragraphs 52 – 53 advocates that doctors support patients approaching death to “encourage them to think about what they might want for themselves… and to discuss their wishes and concerns…”4,5

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Coventry and Warwickshire Unified Advance Care Planning Policy for Adults FINAL June 2013

1.7 “Discussions should cover:

• the patient’s wishes, preferences or fears in relation to their future treatment and care • the feelings, beliefs or values that may be influencing the patient’s preferences and decisions • the family members, others close to the patient or any legal proxies that the patient would

like to be involved in decisions about their care • interventions which may be considered or undertaken in an emergency, such as

cardiopulmonary resuscitation (CPR), when it may be helpful to make decisions in advance • the patient’s preferred place of care (and how this may affect the treatment options available) • the patient’s needs for religious, spiritual or other personal support”.

1.8 The Royal College of Nursing and Royal College of General Practitioners joint “End of Life Care Patient Charter” published in 2011 assures that when an individual wishes staff will “Listen to your wishes about the remainder of your life, including your final days and hours, answer as best we can any questions that you have and provide you with the information that you feel you need; help you think ahead so as to identify the choices that you may face, assist you to record your decisions and do our best to ensure that your wishes are fulfilled, wherever possible, by all those who offer you care and support”6. 1.9 All health and social care professionals have a duty to provide tailored care to individuals in accordance with their own specific preferences. This is particularly important for individuals who are approaching the end of life who may deteriorate such that they are no longer able to communicate their preferences for care. 1.10 The benefits of ACP in accordance with this policy include:-

• Implementation of an agreed streamlined process for ACP across Coventry and Warwickshire

• Adoption of locally approved tools to identify individuals approaching the end of life • Identification of the preferences of individuals approaching the end of life using tools which

are recognised across the whole locality of health and social care providers and the voluntary sector

• Increased number of individuals dying in their preferred place of care • Increased number of patients on the GP practices’ supportive and palliative care registers • Improved person-centred care provided through effective communication across

organisational boundaries with the goal of contributing to improved end of life care • Improved proactive decision making regarding “Do Not Attempt Cardio-Pulmonary

Resuscitation” in patients approaching the end of life and communication of these decisions across organisational boundaries

• Reduction in the number of inappropriate hospital admissions at the end of life • Decreased complaints regarding end of life care (over 50% of hospital complaints are related

to end of life treatment - Health Commission data from 2004 to 2006)7 • Improved carer and family satisfaction as a result of improved care of individuals at the end

of life • Positive impact on bereavement for carers and family

1.11 ACP provides an excellent example of a QIPP initiative (Department of Health Quality, Innovation, Productivity and Prevention)8 involving integrated working across health and social care boundaries. 1.12 The Coventry and Warwickshire End of Life Care Provider Forum (‘C-A-S-T-L-E’ Forum) represents providers of end of life care and brings together health and social care professionals from Coventry and Warwickshire (see Appendix 5 for membership of the Forum). This forum supports the development of a streamlined process for ACP to be implemented across the health and social care sectors in Coventry and Warwickshire.

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Coventry and Warwickshire Unified Advance Care Planning Policy for Adults FINAL June 2013

2.0 DEFINITIONS 2.1 End of Life Care Care that helps all those with advanced, progressive, incurable illness to live as well as possible until they die. It enables the supportive and palliative care needs of both patient and family to be identified and met throughout the last phase of life and into bereavement. It includes management of pain and other symptoms and provision of psychological, social, spiritual and practical support. The definition of the beginning of end of life care is variable according to individual person; for example the time of diagnosis of a condition which usually carries a poor prognosis, e.g. motor neurone disease or when there is a deterioration in a chronic illness such that prognosis is measured in months or possibly a year or two (adapted from “National Council for Palliative Care 2006” page 47 of the National End of Life Care Strategy 2008)9. 2.2 Advance care planning (ACP) ACP is a voluntary process of discussion and review to help an individual who has capacity to anticipate how their condition may affect them in the future. If they wish an individual may record their choices about their future care and treatment and / or an advance decision to refuse a treatment in specific circumstances. These can then be referred to by those responsible for their care or treatment (whether professional staff or family carers) in the event that they lose capacity to decide once their illness progresses (adapted from “Capacity, care planning and advance care planning in life limiting illness: A Guide for Health and Social Care Staff” May 2011)1. 2.3 Advance statement An advance statement is a written statement which is either written down by the person themself or written down for them with their agreement by someone else. An advance statement is made by an individual before losing capacity to document their wishes and feelings. It may cover issues they wish to be considered in the case of future loss of capacity due to illness, such as the type of medical treatment they would want or not want, where they would prefer to live or how they wish to be cared for. It is helpful for a health or social care professional to support an individual when writing an advance statement, so that they may discuss the potential likely future treatment options or place(s) of care which are likely to be relevant or offered in the future. 2.3.1 Although advance statements are not legally binding, carers are required under the Mental Capacity Act to take them into account when considering the individual’s best interests. There is no set format for advance statements, although national examples exist such as the Preferred Priorities for Care (PPC) tool. For the local adaptation of the PPC see:- http://www.c-a-s-t-l-e.org.uk/media/13112/castle-ppc-may2013.pdf adapted from “Capacity, care planning and advance care planning in life limiting illness: A Guide for Health and Social Care Staff” May 20111; see also summary information leaflet explaining the tools used in general and advance care planning:- http://www.c-a-s-t-l-e.org.uk/media/12641/national-eolc-programme-differences-between-general-care-planning-_-decisions-made-in-advance-sept-2012.pdf 2.4 Advance decisions to refuse treatment (ADRT) If a person wishes to make a legally-binding refusal of treatment they may make a formal advance decision to refuse treatment (ADRT). This is a decision to refuse a specific treatment made in advance by a person who has capacity to do so. This decision only applies at a future time when that person lacks capacity to consent to, or refuse, the specified treatment. This is set out in section 24 of the Mental Capacity Act 10. Specific rules apply to advance decisions to refuse life-sustaining treatment.

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Coventry and Warwickshire Unified Advance Care Planning Policy for Adults FINAL June 2013

2.4.1 An advance decision to refuse treatment: • Can be made only by someone over the age of 18 who has mental capacity • Is a decision relating to refusal of specific treatment and may also include specific

circumstances • Can be verbal, but if an advance decision includes refusal of life sustaining treatment, it must

be in writing, signed and witnessed and include the statement ‘even if life is at risk’ • Will only come into effect if the individual loses capacity • Only comes into effect if the treatment and any circumstances are those specifically identified

in the advance decision to refuse treatment • Is legally binding if valid and applicable to the circumstances • Can be overridden by the Mental Health Act, but only for psychiatric treatment

2.4.2 A health care professional who needs to make a decision about a person’s medical treatment when that person lacks capacity is legally obliged to establish the validity and applicability of any ADRT, adapted from “Capacity, care planning and advance care planning in life limiting illness: A Guide for Health and Social Care Staff” May 20111; see also summary information leaflet explaining the tools used in general and advance care planning:- http://www.c-a-s-t-l-e.org.uk/media/12641/national-eolc-programme-differences-between-general-care-planning-_-decisions-made-in-advance-sept-2012.pdf 2.4.3 Further information explaining ADRTs:- http://www.c-a-s-t-l-e.org.uk/media/14598/eolc_adrt_guide_web_jan2013.pdf 2.5 Lasting Power of Attorney (LPA) Lasting Power of Attorney refers to the appointment of a person (an ‘attorney’) to take decisions on an individual’s behalf if that individual subsequently loses capacity. This is known as ‘Lasting Powers of Attorney’ (LPA) under the provisions of the Mental Capacity Act. LPA can apply to

• health and welfare or

• property and affairs. 2.5.1 Only health and welfare attorneys can make healthcare decisions, and they can only make decisions about life-sustaining treatment if this has been specifically allowed in the LPA document. LPAs come into effect only when the person in question loses capacity to make the decision(s) to which the powers of attorney relate. An LPA must be in a prescribed form and be registered with the Office of the Public Guardian. 2.5.2 It is important to ascertain the validity of any LPA and its scope. The Court of Protection can provide information about validity and provide directions about use of the LPA and, if required, removal of LPA powers if the attorney does not act in a person’s best interests. (Comprehensive information about this issue is available in the Mental Capacity Act Code of Practice, chapters 7 and 8; an explanation about the Court of Protection and its powers is in paragraph 8.1 of the Code of Practice)10. 3.0 PURPOSE 3.1 This policy is designed to provide health and social care professionals with an agreed framework for the implementation of ACP in Coventry and Warwickshire using a locally approved streamlined process based on local and national guidance (National End of Life Care Programme and The National End of Life Care Strategy 2008)1,2. 3.2 The process incorporates an integrated team approach to facilitate ACP across all care settings, coordinating services in the community, acute hospital and mental health trusts, the ambulance service, hospices and social care. The benefits of such a coordinated approach will facilitate improved communication regarding an individual’s future care preferences across organisational

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Coventry and Warwickshire Unified Advance Care Planning Policy for Adults FINAL June 2013

boundaries using locally recognised tools with the aim of achieving an individual’s preferences for care including their preferred place of care (and preferred place of care when they are dying) where possible. 3.3 While this policy focuses on implementing a streamlined process for ACP for individuals residing in Coventry and Warwickshire who are approaching the end of life, it is recognised that other individuals who do not have life-limiting illness may wish to engage with ACP. The processes and tools discussed in this document may also be of relevance to such individuals to record their future preferences. 4.0 AUDIENCE This policy is for approval at Executive level by the following NHS Trusts and orgnasiations in Coventry and Warwickshire:-

• South Warwickshire NHS Foundation Trust

• University Hospitals of Coventry and Warwickshire NHS Trust

• George Eliot Hospital NHS Trust

• Coventry and Warwickshire Partnership NHS Trust

• Health and Wellbeing Boards for Coventry and Warwickshire • The West Midlands Ambulance Service NHS Trust

The policy is also for the attention of:- The local Clinical Commissioning Groups:-

• Coventry and Rugby Clinical Commissioning Group

• South Warwickshire Clinical Commissioning Group

• Warwickshire North Clinical Commissioning Group

The Local Medical Committees:- • Coventry Local Medical Committee and

• Warwickshire Local Medical Committee

The local hospices:- • The Myton Hospices

• Mary Ann Evans Hospice and

• The Shakespeare Hospice

The independent Out of Hours Provider:- • Warwickshire Harmoni

This policy has been developed to apply to all health and social care staff working in these organisations and is relevant for any adult residing in Coventry and Warwickshire. 5.0 ASSOCIATED DOCUMENTS 5.1 RELATED POLICIES AND PROCEDURES This policy should not be read in isolation, and reference should be made to such policies as those listed below to assist with process, detail, documentation and supporting guidance.

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Coventry and Warwickshire Unified Advance Care Planning Policy for Adults FINAL June 2013

Other relevant policies and procedures for individual organisations (this is not an exhaustive list):-

• CONSENT • MENTAL CAPACITY ACT • TRANSFER

(to other health or social care institutions) • DISCHARGE

(e.g. from hospital, hospice or care home) • INFORMATION GOVERNANCE • EPaCCS (Electronic Palliative Care Coordination System) • CARDIO-PULMONARY RESUSCITATION (CPR) • COVENTRY AND WARWICKSHIRE UNIFIED ADULT DO NOT ATTEMPT

CARDIOPULMONARY RESUSCITATION (DNACPR) POLICY (including information sharing and security, IT security, electronic communication acceptable use, information risk management, information handling procedures).

See Section 22 - References for relevant national policy and guidance. 6.0 REPSONSIBILITIES / DUTIES The overarching responsibility for the ratification of this policy is held by the Chair of the Coventry and Warwickshire End of Life Care Provider (‘CASTLE’) Forum and Coventry and Warwickshire Unified Advance Care Planning (ACP) Policy Working Group (see Section 21). 6.1 WEST MIDLANDS (SOUTH) HIEC ADVANCE CARE PLANNING PROJECT

WM(S) HIEC ACP Project A 2010 – 2011 HIEC (Health Innovation and Education Cluster) pilot project which was led by Coventry and Warwickshire consultants in palliative medicine and senior health professionals to evaluate ACP in this locality:

• in order to improve healthcare for the benefit of patients in any care setting • through a more improved and streamlined approach to the care of the individual patient • to collaborate across organisational boundaries to support health and social care staff • to provide coordinated education for health and social care professionals for the benefit of

patients wherever they may be • to evaluate the ACP processes initiated through this project

This project and the evaluation thereof have provided the evidence for the need for this policy. (See Appendix 3 for the project team membership.) 6.2 WEST MIDLANDS SHA FUNDED COMMUNITY ACP PROJECT: COVENTRY AND

WARWICKSHIRE A 2011-2012 SHA funded project to provide ACP training in Coventry and Warwickshire for community staff working together in small localities (GPs, community nurses, care home staff, allied health professionals). One of the outcomes of this project (which also incorporates communication skills training in end of life care) was to identify the available tools for ACP through exploring the evidence of effectiveness and the experiences of other groups, including utilising the results from the WM(S) HIEC ACP project. This policy incorporates these recommended tools. (See Appendix 4 for the project team membership).

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Coventry and Warwickshire Unified Advance Care Planning Policy for Adults FINAL June 2013

6.3 COVENTRY AND WARWICKSHIRE END OF LIFE CARE PROVIDER FORUM The Coventry and Warwickshire End of Life Care Provider Forum (‘C-A-S-T-L-E’ Forum) represents providers of end of life care (see Appendix 5 for the membership of the Forum) and brings together NHS Warwickshire and NHS Coventry and the voluntary sector to

• provide the collective expertise to advise with respect to issues regarding End of Life Care in Coventry and Warwickshire as a whole

• receive and act upon information from the WM(S) HIEC ACP Project evaluating a streamlined process of advance care planning in Coventry and Warwickshire

• establish a policy to implement a streamlined advance care planning process for Coventry and Warwickshire as a whole, with the West Midlands SHA funded Coventry and Warwickshire community ACP project team.

6.4 OPERATIONAL ACCOUNTABILITY AND RESPONSIBILITY 6.4.1 Chief Executives of provider organisations are responsible for:

• Governance compliance for the policy and procedure • Ensuring that this policy adheres to statutory requirements and professional guidance • Supporting unified policy development with other organisations • Reviewing the policy every 2 years collaboratively with other involved organisations • Procuring and / or providing legal support

6.4.2 Executive Management Teams • Responsible for the operational level of care in that organisation • Promote and endorse the use of this policy for ACP in that organisation • Responsible for ensuring that there is an adequate level of resources and expertise to deal

with the range of issues with respect to ACP in that organisation, including ensuring that there are resources available to:-

o support with the ACP process (including electronic and hard copies of relevant tools and documents)

o provide education and training for staff

6.4.3 Clinical responsibility This policy and its appendices are relevant to all clinical staff across all sectors and settings of care including primary, secondary, independent, ambulance and voluntary. It applies to all designations and roles. It applies to all people employed in a caring capacity, including those employed by the local authority or employed privately by an agency. Any health or social care professional can initiate a discussion with the patient and carers (where appropriate) regarding ACP. The individual should, inform where able, those looking after them that there is an advance care plan about themselves and where this can be found.

6.4.4 Directors and Managers responsible for the delivery of care must ensure that:

• Staff are aware of the policy and how to access it. • The policy is implemented. • Ensuring professionals within their line management adhere to guidance from advisory

bodies. • Staff understand the importance of issues regarding ACP. • Staff are trained and updated in managing ACP decisions. • The policy is audited and the audit details are fed back to the nominated Director. • Ensure that ACP tools, resources, leaflets and policy are available as required.

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Coventry and Warwickshire Unified Advance Care Planning Policy for Adults FINAL June 2013

6.4.5 Clinical staff delivering care Individual health and social care professionals delivering care must

• Be aware that individual health and social care professionals are responsible for maintaining their own levels of competency and training and that they keep up-to-date with clinical developments in accordance with their own professional registration bodies.

• Maintain their own levels of competency and training specifically with respect to ACP in accordance with their own professional registration bodies.

• Attend education and training arranged within their organisations regarding ACP. • Adhere to the policy and procedure • Work within their own competencies and to seek support from senior professionals or others

where necessary. • Notify their line manager of any training needs • Notify other services of the advance care plan on transfer of the person • Participate in the audit process

6.4.6 Commissioners and Commissioned Services must:

• Ensure that services commissioned implement and adhere to the policy and procedure 6.4.7 The Ambulance Service staff must:

• Adhere to the policy and procedure • Notify their line manager of any training needs • Ensure that they are aware of an advance care plan either via the individual / relatives or the

health or social care professional requesting assistance 7.0 PROCESS FOR ADVANCE CARE PLANNING See Appendix 1 for a summary flow diagram for ACP in Coventry and Warwickshire This includes hyperlinks to all recommended ACP resources for individuals, their carers and health and social care professionals. http://www.c-a-s-t-l-e.org.uk/media/14601/flow_diagram___supporting_docs_17-5-13.pdf 7.1 Individuals seeking to engage with ACP Individuals who do not have life-limiting illness may wish to engage with ACP. The following paragraphs are intended to support ACP for individuals residing in Coventry and Warwickshire who are likely to be approaching the end of life, however the processes and tools discussed in this document may also be of relevance for individuals who do not have life-limiting illness to record their future preferences ideally in discussion with a health or social care professional. 7.2 Identifying individuals likely to be within the last year (or so) of life 7.2.1 Not everyone wishes to discuss their likely prognosis and future care. Individuals who prefer not to think about the future may feel distressed by ACP discussions. It is important that the issue of whether or not to discuss ACP is approached sensitively by an appropriately trained health or social care professional who has formed a good working relationship with the individual. 7.2.2 The ‘CASTLE document: “Introduction to ACP” – ‘A gift to your family’ may be useful to provide to assist when explaining ACP to an individual. http://www.c-a-s-t-l-e.org.uk/media/13094/castle-acp-introduction-_a-gift-to-your-family_-may2013.pdf Also ‘Planning for your future care’ from NEoLCP14 http://www.c-a-s-t-l-e.org.uk/media/12638/national-eolc-programme-planning-for-your-future-care-sept-2012.pdf 7.2.3 Individuals who do not wish to engage with the process of ACP may be content to discuss whom they would like to be approached on their behalf, in the event that they are unable to speak or communicate. Knowing in advance who to contact will support a health and social care professional when identifying that individual’s personal values, preferences or beliefs. This will assist with

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Coventry and Warwickshire Unified Advance Care Planning Policy for Adults FINAL June 2013

establishing an individual’s “best interests” or what would be for that individual’s “overall benefit”, in the event that the individual was unable to speak or communicate. In this situation an individual may find it helpful to use a wallet card such as the ‘CASTLE document: Wallet “Best Interests” ’ information card’: http://www.c-a-s-t-l-e.org.uk/media/13124/castle-wallet-_best-interests_-contact-cards-may2013.pdf 7.2.4 The Gold Standards Framework (GSF)11 is a systematic evidence based approach to optimising the care for patients nearing the end of life delivered by generalist providers. Patients identified as being in the last stages of life are managed expectantly to ensure

• Consistent high quality care • Alignment with patients’ preferences • Pre-planning and anticipation of needs (advance care planning) • Improved staff confidence and teamwork • More home based, less hospital based care

through improved communication, coordination of care, control of symptoms, continuing support, continued learning, carer and family support and care in the final days. Primary care teams coordinate care of these patients using the “GSF” Register or “GP Supportive and Palliative Care Register”. 7.2.5 The Coventry and Warwickshire Supportive and Palliative Care Indicators Tool (SPICT)12 has been developed locally by the West Midlands (South) ACP Project Team in conjunction with work carried out by colleagues in NHS Lothian (see also appendix 6). The Coventry and Warwickshire SPICT has been approved for use by the SPICT™ programme:- http://www.c-a-s-t-l-e.org.uk/planning-ahead/coventry-and-warwickshire-spict.aspx The Coventry and Warwickshire SPICT is the tool recommended to support Coventry and Warwickshire health and social care professionals to identify patients who would benefit from a supportive and palliative approach to their care. Patients who fulfill SPICT criteria are likely to be approaching the end of life. The Coventry and Warwickshire SPICT (Supportive and Palliative Care Indicators Tool)12:- http://www.c-a-s-t-l-e.org.uk/media/13207/castle-cw-spict-october-2012.pdf 7.3 Identifying individuals who may benefit from ACP 7.3.1 Individuals who may benefit from ACP include those who:-

• Express their future preferences for care either verbally or in writing. • Fulfil SPICT criteria (see section 8.4). • Are identified by the primary care team using the “GSF” Register or “GP Supportive and

Palliative Care Register”.

7.3.2 Other key time points when it may be appropriate to initiate ACP discussions:- • Life changing event, e.g. death of a spouse. • Following a new diagnosis of a life-limiting condition. • Significant change in treatment focus. • At the request of an individual.

7.3.3 However not everyone wishes to discuss their likely prognosis and future care. Individuals who prefer not to think about the future may feel distressed by ACP discussions. 7.3.4 It is important that the issue of whether or not to discuss ACP is approached sensitively by a health or social care professional who has developed a good working relationship with the individual. Nevertheless individuals who initially feel anxious about such discussions may later find that having discussed their expectations, future prognosis, and learned about possible treatments and care options, they feel a sense of relief in establishing a more defined future plan of care.

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Coventry and Warwickshire Unified Advance Care Planning Policy for Adults FINAL June 2013

8.0 OFFERING ACP See:-

• Support Sheet 3: “Advance Care Planning” April 2010; NHS National End of Life Care Programme13. http://www.c-a-s-t-l-e.org.uk/media/12635/national-eolc-programme-support-sheet-3-advance-care-planning-sept-2012.pdf

• The National End of Life Care Programme leaflet14:- “Planning for your future care” 1st Feb 2012; NHS National End of Life Care Programme, 3rd Floor, St John’s House, East Street, Leicester LE1 6NB http://www.c-a-s-t-l-e.org.uk/media/12638/national-eolc-programme-planning-for-your-future-care-sept-2012.pdf

8.1 Key points regarding ACP: • The ACP process is voluntary and should not be as a result of external pressure. • ACP is not simply a process of form filling. • Staff need appropriate training so that they have the necessary confidence, competence and

skills to facilitate ACP. • The result of the ACP process may be a statement of an individual’s wishes, preferences, beliefs

and values; this may include a choice for their preferred place of care and more specifically the preferred place of care during the dying phase.

• ACP is a changeable process and so it is important to ensure that there are opportunities for future review and that processes are in place to ensure that information remains accurate and up-to-date and reflects the need for change.

9.0 PORTFOLIO OF RECOMMENDED TOOLS AND DOCUMENTS A portfolio of recommended tools and documents are given in this policy which may be used in Coventry and Warwickshire to support with the ACP process as listed below. 9.1 Suitable for health and social care professionals:-

• Flow diagram for ACP in Coventry and Warwickshire http://www.c-a-s-t-l-e.org.uk/media/14601/flow_diagram___supporting_docs_17-5-13.pdf

• Coventry and Warwickshire SPICT tool to support staff with identifying patients who are likely to be approaching the end of life. http://www.c-a-s-t-l-e.org.uk/media/13207/castle-cw-spict-october-2012.pdf

• Assessing Capacity flow diagrams 1 and 2:- http://www.c-a-s-t-l-e.org.uk/media/13088/capacity-flow-diagram1-may2013.pdf http://www.c-a-s-t-l-e.org.uk/media/13091/capacity-flow-diagram2-may2013.pdf

• Best interests decision-making flow diagram:- http://www.c-a-s-t-l-e.org.uk/media/13079/best-interests_capacity-flow-diagram3-may2013.pdf

• Use of Independent Mental Capacity Advocates:- http://www.c-a-s-t-l-e.org.uk/media/13139/imca-service_capacity-flow-diagram4-may2013.pdf

• Explaining ACP – National End of Life Care Programme: Support Sheet 3 http://www.c-a-s-t-l-e.org.uk/media/12635/national-eolc-programme-support-sheet-3-advance-care-planning-sept-2012.pdf

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• Differences between general care planning and decisions made in advance – National End of Life Care Programme: http://www.c-a-s-t-l-e.org.uk/media/12641/national-eolc-programme-differences-between-general-care-planning-_-decisions-made-in-advance-sept-2012.pdf

• ADRT – A Guide… - National End of Life Care Programme: http://www.c-a-s-t-l-e.org.uk/media/14598/eolc_adrt_guide_web_jan2013.pdf

• Putting affairs in order -. http://www.c-a-s-t-l-e.org.uk/media/13115/castle-_putting-your-affairs-in-order_-may2013.pdf

• Funeral ideas and funeral planning: http://www.c-a-s-t-l-e.org.uk/media/13106/castle-funeral-ideas-p1-_-funeral-planning-p2-may2013.pdf

• Further information including organ and tissue donation: http://www.c-a-s-t-l-e.org.uk/media/13109/castle-further-information-incl_organ_tissue-donation-may2013.pdf

9.2 Patient information leaflets • Introductory leaflet to provide to assist when explaining ACP to an individual:

e.g. ‘CASTLE document: “Introduction to ACP” ’ http://www.c-a-s-t-l-e.org.uk/media/13094/castle-acp-introduction-_a-gift-to-your-family_-may2013.pdf

• Further information about ACP: The National End of Life Care Programme leaflet14: “Planning for your future care” 1st Feb 2012; NHS National End of Life Care Programme, 3rd Floor, St John’s House, East Street, Leicester LE1 6NB http://www.c-a-s-t-l-e.org.uk/media/12638/national-eolc-programme-planning-for-your-future-care-sept-2012.pdf

• Suggestions for future aspects of their care which individuals may like to consider:- “Your Values and Future Preferences” leaflet: http://www.c-a-s-t-l-e.org.uk/media/13127/castle-your-values-_-future-preferences-may2013.pdf

• ADRT – A Guide… - National End of Life Care Programme: http://www.c-a-s-t-l-e.org.uk/media/14598/eolc_adrt_guide_web_jan2013.pdf

9.3 Hand-held record of advance care planning discussions for individuals:-

• Front page for the collated ACP document: “CASTLE document: Front page for ACP” http://www.c-a-s-t-l-e.org.uk/media/13103/castle-front-page-for-acp-may2013.pdf

The ACP document itself which may consist of any or all of the following documents:

• Advance Statement, e.g. Preferred Priorities for Care (PPC) Tool http://www.c-a-s-t-l-e.org.uk/media/13112/castle-ppc-may2013.pdf

and / or • Advance Decision to Refuse Treatment (ADRT)

http://www.c-a-s-t-l-e.org.uk/media/13097/castle-adrt-may2013.pdf and / or

• Do Not Attempt Cardio-Pulmonary Resuscitation Form, the Coventry and Warwickshire Unified Adult DNACPR form – refer to ‘The Coventry and Warwickshire Unified Adult DNACPR Policy’ for further information. http://www.c-a-s-t-l-e.org.uk/media/12581/coventry_and_warwickshire_dnacpr_form-p1_and_guidance_notes-p2_may_2013.pdf

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as relevant and according to each individual’s circumstances. 9.4 Documenting the individual’s preferences in the health or social care record:- There is a need for health and social care professionals to record the preferences of an individual under their care in a contemporaneous way in the health care record, to ensure that this is kept up-to-date and accurate. This facilitates continuity of care and effective communication between health and social care staff within an organisation as well as providing robust evidence of the ACP process for the purposes of audit. Documenting a patient’s preferences for their future care in the health care record (with the ability to amend such details if their preferences change) is particularly important if an individual chooses to decline to keep a hand-held record of their future care preferences or where prognosis is extremely short (such as only hours to days to live). 9.4.1 Example tools to illustrate how to document ACP in:-

• Hospital inpatients – http://www.c-a-s-t-l-e.org.uk/media/13136/example-hospital-acp-documentation-may2013.pdf

• Community care settings – http://www.c-a-s-t-l-e.org.uk/media/13130/example-community-acp-documentation-may2013.pdf

• Hospices – http://www.c-a-s-t-l-e.org.uk/media/13133/example-hospice-acp-documentation-may2013.pdf

9.5 Other useful tools for health and social care professionals to consider with individuals, e.g:-

• Fridge sign which notifies where an individual keeps their hand-held ACP document – see “CASTLE document: Fridge sign” http://www.c-a-s-t-l-e.org.uk/media/13100/castle-fridge-sign-may2013.pdf

• Wallet information cards – o To explain that they have made an advance care plan and who knows about it – See

“CASTLE document: Wallet ACP information card” http://www.c-a-s-t-l-e.org.uk/media/13121/castle-wallet-acp-information-cards-may2013.pdf

o To give the names and contacts of those who can act in that person’s “Best Interests” See ‘CASTLE document: Wallet “Best Interests” information card’ http://www.c-a-s-t-l-e.org.uk/media/13124/castle-wallet-_best-interests_-contact-cards-may2013.pdf

10.0 DISCUSSING POSSIBLE FUTURE CARE OPTIONS 10.1 All health and social care staff should be open to any ACP discussion instigated by an individual. Staff require appropriate training to enable them to communicate effectively and understand any legal or ethical issues involved; if a health or social care professional does not feel competent to support an individual with ACP discussions, they should explain this to the patient and arrange for someone else to facilitate this with them. 10.2 Health and social care professionals who facilitate ACP require excellent communication skills and an understanding of the individual’s

o medical condition, o likely future path of their illness(es), o clinical treatments which may be offered to the individual in the future, o prognosis and o likely future care needs;

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examples of health care professionals with these skills and knowledge are GPs, senior community nurses, senior hospital medical and nursing staff, specialist nurses and specialist palliative care teams; social care staff may also support ACP discussions with appropriate experience and training.

10.3 The CASTLE patient information leaflet “Your Values and Future Preferences” may be used to provide individuals with some suggestions for future aspects of their care which they may like to consider:- http://www.c-a-s-t-l-e.org.uk/media/13127/castle-your-values-_-future-preferences-may2013.pdf

10.4 A multi-professional team approach to ACP crossing organisational boundaries is likely to be most beneficial. Discussions focus on the views of the individual although they may make a request for a carer, friend, partner or relative to be involved. 10.5 ACP requires that the individual has the capacity to discuss and understand the options available to them and agree what is then planned; it is necessary to maximise capacity by treating any transient conditions affecting cognition and optimising sensory function, such as impaired hearing. 10.6 Discussions take time and effort, usually requiring several meetings over days, weeks or months; the ACP process cannot be completed as a simple checklist exercise. Discussions should take place at the pace permitted by the individual and should involve truth, respect, time, compassion and empathy. Summarising the discussion is a useful way to ensure that the information collected is agreed and described in language which the individual understands. 11.0 DOCUMENTING AN INDIVIDUAL’S FUTURE CARE PREFERENCES 11.1 For an individual to engage in discussions about advance care planning, they must have capacity to make these decisions. For further information regarding assessment of capacity see:- • Assessing Capacity flow diagrams 1 and 2:-

http://www.c-a-s-t-l-e.org.uk/media/13088/capacity-flow-diagram1-may2013.pdf http://www.c-a-s-t-l-e.org.uk/media/13091/capacity-flow-diagram2-may2013.pdf

• Best interests decision-making flow diagram:- http://www.c-a-s-t-l-e.org.uk/media/13079/best-interests_capacity-flow-diagram3-may2013.pdf

• Use of Independent Mental Capacity Advocates:- http://www.c-a-s-t-l-e.org.uk/media/13139/imca-service_capacity-flow-diagram4-may2013.pdf

11.2 The wishes expressed during ACP become relevant when that person loses capacity. Wishes expressed in an advance statement (such as with the PPC) are not legally binding but should be taken into account when professionals are required to make a decision on a person’s behalf when that person lacks capacity. Should an individual wish to make a more formal advance decision to refuse treatment (ADRT) this should be done following the appropriate guidance. An ADRT only comes into force when a person lacks capacity. It is only legally binding if it is valid and applicable under the specific circumstances stated on the ADRT. 11.3 If there is no record of ACP or ADRT then decisions will be made in a person’s ‘Best Interests’. If an individual is unable to document their future care preferences they may be able nominate a preferred decision maker or someone to consult on their behalf to discuss their values in the event of not being able to communicate for themself. See ‘CASTLE document: Wallet “Best Interests” information card’ http://www.c-a-s-t-l-e.org.uk/media/13124/castle-wallet-_best-interests_-contact-cards-may2013.pdf

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11.4 Preferred Priorities for Care (PPC) Tool • The national Preferred Priorities for Care (PPC) tool15 has been adapted for local use in Coventry

and Warwickshire; http://www.c-a-s-t-l-e.org.uk/media/13112/castle-ppc-may2013.pdf

• This tool provides documentation in the form of an advance statement. Wishes expressed in an advance statement are not legally binding but should be taken into account when professionals are required to make a decision on a person’s behalf when that person lacks capacity.

• It must not be photocopied. • It may be held at the FRONT OF A CARE RECORD while the individual is in that care setting

using the ‘Greensleeves’ plastic wallet (see Section 11.7). • A summary of the preferences must be recorded in the individual’s care plan in a way that

ensures the information will be kept up-to-date as per Section 9.4.1. The PPC must remain with the individual at all times and accompanies the individual if they move between care settings, held within the ‘Greensleeves’ plastic wallet.

• It is the responsibility of the health or social care professional arranging the transfer of the individual between care settings to ensure that the:- o The advance care plan travels with the individual to the next care setting. o Staff or carers involved with the transfer are aware of the advance care plan. o Staff or carers expecting the individual at the destination are aware of the advance care plan.

• Health and social care professionals need to ensure that the individual and their carers are aware of the importance of carrying the advance care plan with them, in particular when they move care settings.

11.5 Advance Decision to Refuse Treatment (ADRT) Tool • Should an individual wish to make a more formal advance decision to refuse treatment (ADRT)

this should be done following the appropriate guidance. An ADRT only comes into force when a person lacks capacity. It is only legally binding if it is valid and applicable under the specific circumstances stated on the ADRT.

• The national ADRT tool16 has been adapted for local use in Coventry and Warwickshire, http://www.c-a-s-t-l-e.org.uk/media/13097/castle-adrt-may2013.pdf

• It may be held at the FRONT OF A CARE RECORD while the individual is in that care setting using the ‘Greensleeves’ plastic wallet (see Section 11.7).

• The ADRT must remain with the individual at all times and accompanies the individual if they move between care settings held within the ‘Greensleeves’ plastic wallet.

• It is the responsibility of the health or social care professional arranging the transfer of the individual between care settings to ensure that the:- o The ADRT travels with the individual to the next care setting. o Staff or carers involved with the transfer are aware of the ADRT. o Staff or carers expecting the individual at the destination are aware of the ADRT.

• Health and social care professionals need to ensure that the individual and their carers are aware of the importance of carrying the ADRT with them, in particular when they move care settings.

• If photocopied, a record of who holds a photocopy must be kept so that ALL copies may be updated in the event of the preferences being changed. A summary of the preferences may be recorded in the individual’s care plan in a way that ensures the information will be kept up-to-date as per Section 9.4.1 above.

11.6 Do Not Attempt Cardio-Pulmonary Resuscitation (CPR) decisions Do Not Attempt CPR (DNA-CPR) decisions are part of the ACP process. If a decision has been made that a patient is Not for CPR then this DNA-CPR decision should be communicated to others involved in the clinical care of the patient, in accordance with the Coventry and Warwickshire Unified Adult DNACPR Policy. See also:- http://www.c-a-s-t-l-e.org.uk/media/12581/coventry_and_warwickshire_dnacpr_form-p1_and_guidance_notes-p2_may_2013.pdf

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11.7 The ‘Greensleeves’ plastic wallet • Any ACP documentation (including a PPC, an ADRT or a DNACPR form) should be kept in the

Coventry and Warwickshire ‘Greensleeves’ plastic wallet. This documentation is the personal property of the individual and should move with that individual if he/she moves care settings.

• The ‘Greensleeves’ plastic wallet has a front sheet which highlights the contents of the wallet:- http://www.c-a-s-t-l-e.org.uk/media/13103/castle-front-page-for-acp-may2013.pdf

• The PPC and ADRT documents are held behind this front page in the green section of the wallet; a DNACPR form is held on the reverse in the red section of the wallet visible from behind.

• The ‘Greensleeves’ plastic wallet remains the personal property of the individual. If that individual is in a care setting where there is a set of health care records in use (e.g. Community Nursing care plan, Care Home record, inpatient Hospital records, inpatient Hospice records) then the ‘Greensleeves’ plastic wallet will be held at the front of these health care records. In some care settings (such as the hospital and hospice) the ‘Greensleeves’ plastic wallet will be filed in reverse so that the red section with the DNACPR form is uppermost for easy recognition and the green section of the wallet containing other ACP information is behind.

12.0 THE WEST MIDLANDS AMBULANCE SERVICE (WMAS)

12.1 Individuals being transferred by ambulance should be transferred with their ACP documentation contained within the 'Greensleeves' plastic wallet. 12.2 The contents of the 'Greensleeves' plastic wallet remain the property of that individual (or if he/she is unable to communicate, their relative or representative). This information must be highlighted to the WMAS crew prior to ambulance transfer. When transferring an individual from home the staff involved with organising the transfer (and the individual and/or their relatives) may inform the WMAS crew of the existence of this information. The WMAS crew may also clarify with the individual or relatives the focus of the patient's care and whether the patient is being managed palliatively. 12.3 The 'Greensleeves' plastic wallet and any ACP documentation (including a DNACPR form) must be accessible to the WMAS crew during the transfer. If the individual is being transported with their set of health care records, the 'Greensleeves' documentation should remain filed at the front of the individual's health care record. 13.0 COMMUNICATING CARE PREFERENCES TO THE MULTI-PROFESSIONAL TEAM

13.1 Staff have a duty of care to communicate effectively between teams for the benefit of their patients. Staff should identify the most appropriate way to communicate to other health and social care professionals about ACP discussions for individuals to ensure that other members of the health and social care team or teams involved in a patient’s care, have up-to-date information necessary to provide the patient with safe, effective and timely care. 13.2 GMC Guidance “Treatment and care towards the end of life: good practice in decision making” (1 July 2010)5; ‘Working in teams and across service boundaries’ states that “Most treatment and care at the end of life is delivered by multi-disciplinary and multi-agency teams, working together to meet the needs of patients as they move between different health and social care settings and access different services. This can include GP practices, local care homes, pharmacies, hospices, ambulance services, local hospitals, and local authority and voluntary sector support services”. 13.3 Doctors

• “must communicate effectively with other members of the health and social care team or teams involved in a patient’s care, sharing with them the information necessary to provide the patient with safe, effective and timely care”.

• “must make a record of the decisions made about a patient’s treatment and care, and who was consulted in relation to those decisions”.

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• “must do [their] best to make sure that all those consulted, especially those responsible for delivering care, are informed of the decisions and are clear about the goals and the agreed care plan, unless the patient indicates that particular individuals should not be informed”.

• “should check the handover arrangements where [they] work, and use the available systems and arrangements for information storage and exchange, to ensure that the agreed care plan is shared within the healthcare team, with both paid and unpaid carers outside the team and with other health professionals involved in providing the patient’s care. This is particularly important when patients move across different care settings (hospital, ambulance, care home) and during any out-of-hours period.

• Failure to communicate some or all relevant information can lead to inappropriate treatment being given (for example, DNACPR decisions not being known about) and failure to meet the patient’s needs (for example, their wish to remain at home not being taken into account)”.

13.4 Patient-held documentation

• Advance Statements or Advance Decisions to Refuse Treatment e.g. the locally adapted Preferred Priorities for Care, PPC http://www.c-a-s-t-l-e.org.uk/media/13112/castle-ppc-may2013.pdf and ADRT tools; http://www.c-a-s-t-l-e.org.uk/media/13097/castle-adrt-may2013.pdf provide documentation in the form of individualised hand-held records. These enable communication of the ACP discussions when an individual carries these documents with them on their person and shows them to other members of the health and social care team.

• These documents must remain with the individual at all times and accompany the individual when they move between care settings. These documents should be held in the ‘Greensleeves’ plastic wallet (see Section 11.7).

• Patient-held ACP documents (e.g. PPC, ADRT) may be held at the FRONT OF A CARE RECORD while the individual is in that care setting using the ‘Greensleeves’ plastic wallet (see section 11.7).

• A summary of the preferences must be recorded in the individual’s care plan in a way that ensures the information will be kept up-to-date (see Section 9.4.1).

13.5 Communicating an individual’s care preferences to carers With the individual’s consent their care preferences identified through ACP discussions may be communicated to their carers. It is often very important for carers to be involved with ACP discussions as they play an important role in aiming to fulfil an individual’s future preferences for care. 13.6 Written communication to other professionals Letters may be an appropriate way of highlighting that a patient has made an advance care plan. Letters are not a useful way of ensuring information in the advance care plan remains up-to-date and accurate. 13.7 Electronic communication to other professionals 13.7.1 An electronic alert system on a clinical database is helpful in identifying patients who are being managed with a supportive and palliative approach to care and who may have made an advance care plan. Examples of this include:-

• Electronic alert for patients on the GP “GSF” or “Supportive and Palliative Care Register” • The University Hospital of Coventry and Warwickshire NHS Trust CRRS (Clinical Results

Reporting System) database which has a Supportive and Palliative Care electronic alert which identifies patients who are being managed with a supportive and palliative care approach and reminds clinicians to check whether these patients are carrying an advance care plan.

13.7.2 The Coventry and Warwickshire Electronic Palliative Care Coordination System (EPaCCS) will provide a secure electronic means of communicating clinical information about an

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individual who is approaching the end of life across all relevant care settings. For further information see http://www.c-a-s-t-l-e.org.uk/planning-ahead/epaccs-(the-electronic-palliative-care-coordination-system-for-coventry-and-warwickshire).aspx 13.7.3 Emails may be an appropriate way of highlighting that a patient has made an advance care plan, provided that this transfer of information is via a secure mode of transfer of such information and is permitted in accordance with the organisation’s IT policy for secure confidential information transfer. Emails are not a useful way of ensuring information in the advance care plan remains up-to-date and accurate. 13.8 Verbal communication to other care professionals Verbal handover including telephone calls remain a very effective way of providing handover regarding individual’s ACP discussions and goals of care, particularly across different organisations. 13.9 Reviewing and updating information Staff have a duty to ensure that clinical information regarding a patient remains accurate and up-to-date. ACP is an on-going process, which needs continuous review as a patient’s condition changes. Organisations should ensure that processes are in place to ensure that advance care plans remain up-to-date and in accordance with a patient’s wishes. An illustration of how this may be achieved is given in Section 9.4.1. 14.0 RECORDING PREFERENCES CONTEMPORANEOUSLY IN A CARE RECORD Decisions made during ACP discussions may change as a result of many factors. Therefore organisations should ensure that processes are in place to ensure that advance care plans are reviewed whenever an individual’s circumstances change for whatever reason (whether physical, psychological, spiritual or social). Any changes must be recorded on the individual’s personal advance care plan and also on their EPaCCS record according to the relevant EPaCCS policy and procedure. Decisions may be changed at any time provided the individual has capacity to make new decisions. See also Section 9.4.1. 15.0 TRAINING AND AWARENESS 15.1 Individual organisations are required to ensure that relevant staff are aware of this local ACP policy. 15.2 Key relevant staff for formal training in facilitating ACP:-

o Acute Hospital Trusts: Consultants, registrars, SAS doctors, junior doctors (FY1, FY2, ST and CMT in medical and surgical specialties), ward managers, ward sisters, senior ward nurses, specialist nurses, allied health professionals.

o Community: GPs, GP registrars, community nurses (community matrons, district nurses), specialist nurses, allied health professionals.

o Ambulance service: Trained responders: emergency care assistants, paramedics, emergency care practitioners.

o Mental Health Trust: Consultants, registrars, SAS doctors, junior doctors, (FY1, FY2, ST and above), ward managers, ward sisters, specialist nurses, allied health professionals.

o Social Care: Care Home staff: Managers, key-worker nursing staff; home carers. o Hospices: Consultants, registrars, SAS doctors, junior doctors, (ST1 – 3), ward

managers, ward sisters, ward nurses, day hospice nurses, ‘hospice-at-home’ professionals, specialist nurses, allied health professionals.

15.3 Organisations may approach their local Specialist Palliative Care Team/s or other appropriately trained professionals to request specific training for staff.

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16.0 DOCUMENT MANAGEMENT 16.1 The ‘C-A-S-T-L-E’ website www.c-a-s-t-l-e.org.uk is the website of the Coventry and Warwickshire End of Life Care Provider Forum (‘C-A-S-T-L-E’ Forum).

16.2 A copy of this policy will be available on this website which is accessible for all health and social care professionals in Coventry and Warwickshire:- http://www.c-a-s-t-l-e.org.uk/planning-ahead.aspx

16.3 The policy will also be available on the Intranet pages of individual organisations. 17.0 MONITORING AND GOVERNANCE Individual organisations will need to ensure processes are in place to monitor the implementation of this policy. 18.0 CONFIDENTIALITY AND DATA PROTECTION Individual organisations will need to ensure implementation of this policy does not contravene other relevant policies and procedures for individual organisations, (see Section 5.0). 19.0 EQUALITY AND DIVERSITY This policy will not negatively impact on equality and diversity and may positively enhance equality and diversity by increasing awareness of ACP for all individuals irrespective of personal values, ethnic background, culture, religious and spiritual beliefs, underlying health issues, social circumstances and whether they are being cared for at home, in a care home, in hospital or in a hospice. 20.0 AUDIT Implementation of this policy will be subject to regular audit at an organisational level. Results of these audits will be made available to The Coventry and Warwickshire End of Life Care Provider Forum (‘C-A-S-T-L-E’ Forum). Useful measures to review for individual organisations may include:-

• availability of ACP training for relevant staff – see Section 6 • uptake of this ACP training by staff • improvement in confidence and competency of staff to facilitate ACP having received training • whether patients are identified as approaching the end of life • proportion of patients (identified as approaching the end of life) who are offered ACP • whether patients preferences for care are met at the end of life • whether patients achieved their preferred place of death (including reasons why not as

patients’ preferences change over time)

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21.0 KEY INDIVIDUALS INVOLVED WITH DEVELOPING THIS DOCUMENT ‘Coventry and Warwickshire Unified Advance Care Planning (ACP) Policy For Adults’ Working Group:-

Name Title Organisation Represented Dr Sarah MacLaran Consultant in Palliative Medicine,

Co-Chair of the UHCW End of Life Care Committee, UHCW Palliative Care Lead for “Transform” –National End of Life Care Programme: Transforming End of Life Care in Acute Hospitals –Route to Success Programme, Clinical Lead for EPaCCS for Coventry and Warwickshire

University Hospitals of Coventry and Warwickshire NHS Trust and The Myton Hospices

West Midlands (South) HIEC Advance Care Planning Project and West Midlands SHA funded Community Advance Care Planning Project for Coventry and Warwickshire

Angela Wall Community Matron Coventry and Warwickshire Partnership Trust

West Midlands (South) HIEC Advance Care Planning Project and West Midlands SHA funded Advance Care Planning Project for Coventry and Warwickshire

Jan Furlong West Midlands (South) HIEC Advance Care Planning Project Clinical Champion

Warwick University and Previously The Myton Hospices

West Midlands (South) HIEC Advance Care Planning Project and West Midlands SHA funded Advance Care Planning Project for Coventry and Warwickshire

Jodie Morris Macmillan Specialist Palliative Care Nurse, UHCW Advance Care Planning Champion for “Transform” –National End of Life Care Programme: Transforming End of Life Care in Acute Hospitals –Route to Success Programme

University Hospitals of Coventry and Warwickshire NHS Trust

West Midlands SHA funded Community Advance Care Planning Project for Coventry and Warwickshire, Coventry and Warwickshire End of Life Care Advance Care Planning Project

Tracey Evans Macmillan Specialist Palliative Care Nurse NHS Warwickshire Rugby Community Specialist Palliative Care Team

Sheila Henderson Macmillan Specialist Palliative Care Nurse NHS Warwickshire Rugby Community Specialist Palliative Care Team

On behalf of a collaborative working group including:

• West Midlands (South) HIEC Advance Care Planning Project Team

• West Midlands SHA funded Advance Care Planning Project Team for Coventry and Warwickshire

• Coventry and Warwickshire End of Life Care Provider Forum (‘C-A-S-T-L-E’ Forum)

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22.0 REFERENCES

1. The National End of Life Care Programme, www.endoflifecare.nhs.uk/ and “Capacity, care planning and advance care planning in life limiting illness; A Guide for Health and Social Care Staff” May 2011; NHS National End of Life Care Programme, 3rd Floor, St John’s House, East Street, Leicester LE1 6NB accessed 28 May 2013: http://www.endoflifecareforadults.nhs.uk/assets/downloads/ACP_booklet_June_2011__with_links.pdf

2. “The End of Life Care Strategy: Promoting high quality care for all adults at the end of life” July 2008; Accessed 28 May 2013: https://www.gov.uk/government/publications/end-of-life-care-strategy-promoting-high-quality-care-for-adults-at-the-end-of-their-life

3. The NHS National Institute for Health and Clinical Excellence “End of life care for adults quality standard” accessed 28 May 2013: http://www.nice.org.uk/guidance/qualitystandards/endoflifecare/home.jsp

4. General Medical Council Consent guidance published 2008 “Consent: patients and doctors making decisions together” accessed 28 May 2013: http://www.gmc-uk.org/guidance/ethical_guidance/consent_guidance_advanced_care_planning.asp

5. General Medical Council End of Life Care guidance published 1 July 2010 “Treatment and care towards the end of life: good practice in decision making” accessed 28 May 2013: http://www.gmc-uk.org/guidance/ethical_guidance/end_of_life_care.asp

6. Royal College of Nursing and Royal College of General Practitioners: “End of Life Care Patient Charter” Page 5 on the link below accessed 28 May 2013: http://www.rcgp.org.uk/clinical-and-research/clinical-resources/~/media/Files/CIRC/Matters%20of%20Life%20and%20Death%20FINAL.ashx

7. The Kings Fund End of Life Care Report 2009 (no longer available online)

8. The Department of Health Quality, Innovation, Productivity and Prevention (QIPP) programme accessed 28.5.13 http://www.improvement.nhs.uk/Default.aspx?alias=www.improvement.nhs.uk/qipp

9. Page 47 of “The End of Life Care Strategy: Promoting high quality care for all adults at the end

of life” July 2008; Accessed 28 May 2013: https://www.gov.uk/government/publications/end-of-life-care-strategy-promoting-high-quality-care-for-adults-at-the-end-of-their-life

10. The Mental Capacity Act including code of conduct: accessed 28 May 2013 http://www.justice.gov.uk/protecting-the-vulnerable/mental-capacity-act

11. The Gold Standards Framework “Enabling a gold standard of care for all people nearing the end of life” accessed 28 May 2013: http://www.goldstandardsframework.org.uk/AdvanceCarePlanning.html

12. ‘SPICT’ tool: Boyd K and Murray SA: “Recognising and managing key transitions in end of life care” Br Med J 16 Sept 2010 p 341: c4863; Accessed 28 May 2013

http://www.bmj.com/content/341/bmj.c4863.full

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Coventry and Warwickshire Unified Advance Care Planning Policy for Adults FINAL June 2013

13. Support sheet 3: “Advance Care Planning” April 2010; NHS National End of Life Care Programme, 3rd Floor, St John’s House, East Street, Leicester LE1 6NB accessed 28 May 2013: http://www.endoflifecareforadults.nhs.uk/assets/downloads/supportsheet3_1.pdf

14. “Planning your future care” 1st Feb 2012; NHS National End of Life Care Programme, 3rd Floor, St John’s House, East Street, Leicester LE1 6NB accessed 28 May 2013: http://www.endoflifecareforadults.nhs.uk/assets/downloads/EoLC_Planning_for_your_future_care_FINAL_010212.pdf

15. National End of Life Care Programme Preferred Priorities for Care document; accessed 28 May 2013: http://www.endoflifecare.nhs.uk/tools/core-tools/preferredprioritiesforcare

16. National example Advance Decision to Refuse Treatment document; accessed 20 Feb 2012: http://www.adrt.nhs.uk/pdf/EoLC_appendix1.pdf

17. “Decisions relating to Cardiopulmonary Resuscitation: A Joint Statement from the British Medical Association, the Resuscitation Council (UK) and the Royal College of Nursing”; October 2007 and updated November 2007 accessed 20 Feb 2012: http://www.resus.org.uk/pages/dnar.htm and http://www.resus.org.uk/pages/dnar.pdf

18. The Coventry and Warwickshire “High Level Procedure for Managing Expected Deaths in the Community including Do Not Attempt Cardiopulmonary Resuscitation Disorders”; produced in June 2011 with the endorsement of Her Majesty’s Coroner for Coventry and Warwickshire, the Chief Executive of the Arden Cluster, Coventry End of Life Care Clinical Lead and the Chief Executive Officer of South Warwickshire Foundation Trust/ Chair of the Coventry and Warwickshire End of Life Care Provider Forum (‘C-A-S-T-L-E’ Forum).

Further recommended resources:-

• Fact Sheet 2: “Advance Care Planning” Dec 2008; NHS National End of Life Care Programme, 3rd Floor, St John’s House, East Street, Leicester LE1 6NB accessed 28 May 2013: http://www.endoflifecareforadults.nhs.uk/assets/downloads/factsheet002.pdf

• Support sheet 4: “Advance Decisions to Refuse Treatment” April 2010; NHS National End of

Life Care Programme, 3rd Floor, St John’s House, East Street, Leicester LE1 6NB accessed 28 May 2013: http://www.endoflifecareforadults.nhs.uk/assets/downloads/supportsheet4_1.pdf

• British Medical Association “Consent tool kit”; Fifth Edition: December 2009; accessed 28

May 2013: http://bma.org.uk/practical-support-at-work/ethics/consent-tool-kit

• British Medical Association “Mental Capacity Act tool kit”; July 2008; accessed 28 May 2013:

http://bma.org.uk/practical-support-at-work/ethics/mental-capacity-tool-kit

• Royal College of Physicians Concise Guidance to Good Practice: A series of evidence-based guidelines for clinical management: Number 12: “Advance care planning” Accessed 28 May 2013 http://www.rcplondon.ac.uk/resources/concise-guidelines-advance-care-planning

• Recommended standards for recording "Do not attempt resuscitation" (DNAR) decisions: Accessed 28 May 2013 http://www.resus.org.uk/pages/DNARrstd.htm

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Coventry and Warwickshire Unified Advance Care Planning Policy for Adults FINAL June 2013

• Detering KM, Hancock AD, Reade MC et al “The impact of advance care planning on end of life care in elderly patients: randomised controlled trial” BMJ 2010;340:c1345; accessed 28 May 2013:

http://www.bmj.com/highwire/filestream/347616/field_highwire_article_pdf/0.pdf

• Strategy document: “Provision of End of Life Care Services for Adult Patients in Coventry”: “All people in Coventry at the end of life will be supported and cared for, feel safe and listened to and will be enabled to die with dignity and respect”; NHS Coventry 2009-2013

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Coventry and Warwickshire Unified Advance Care Planning Policy for Adults FINAL June 2013

Appendices:

PAGE Appendix 1 Flow diagram for Advance Care Planning in Coventry and Warwickshire 28 Appendix 2 Coventry and Warwickshire ACP Steering Group 29 Appendix 3 WM(S) HIEC ACP project team 29 Appendix 4 SHA-funded Coventry and Warwickshire Community ACP project team 29 Appendix 5 Appendix 6

Coventry and Warwickshire End of Life Care (‘CASTLE’) Provider forum Acknowledgements

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Page 28

Appendix 1: Flow diagram for Advance Care Planning in Coventry and Warwickshire:- Also available with all included documents hyperlinked via http://www.c-a-s-t-l-e.org.uk/planning-ahead.aspx

Appendix 2 – Coventry and Warwickshire ACP Steering Group Formed in December 2011 from the merging of the WM (S) HIEC ACP project team and the SHA-funded Coventry and Warwickshire Community ACP project team. The project team members from these two projects are listed below.

Appendix 3 – WM(S) HIEC ACP project team

Members of the project team:-

• Daniel Munday – WM(S) HIEC ACP Project Lead, Coventry Clinical End of Life Care Lead, Consultant in Palliative Medicine, Coventry Community Palliative Care Team

• Jo Poultney – WM(S) HIEC ACP Project Education Lead, Consultant in Palliative Medicine, Rugby Community Palliative Care Team and Coventry Myton Hospice

• Jan Furlong, Clinical Champion, WM(S) HIEC ACP Project • Veronica Nanton, Senior Research Fellow, WM(S) HIEC ACP Project, Warwick University • Sarah MacLaran, Consultant in Palliative Medicine, University Hospitals of Coventry and Warwickshire and

Coventry Myton Hospice, WM(S) HIEC ACP Project Facilitator • Steph Seeley, GP Rugby • Angela Wall, Coventry Community Matron • Natalie Adams, Lead Cancer and Palliative Care Nurse, South Warwickshire Foundation Trust • Jan Cooper, Principal Teaching Fellow/Deputy Director of Masters Programmes and CPD, Educational

Development & Research Team, Medical School, Warwick University • Helen West, Acting Cancer Services Lead, UHCW • Margaret Bosworth, Myton representative for the WM(S) HIEC ACP Project • Jarina Rashid-Porter, Head of Nursing and Adult Safeguarding, NHS Coventry • Jo Blackburn, Project Lead, End of Life Care Community Commissioning Team, NHS Warwickshire

WM(S) HIEC ACP project report (available via this link) Appendix 4 – SHA-funded Coventry and Warwickshire Community ACP project team

Members of the project team:-

• Jo Blackburn, Project Lead, End of Life Care Community Commissioning Team, NHS Warwickshire • Jodie Morris, End of Life Care Project Nurse • Sarah MacLaran, Consultant in Palliative Medicine, University Hospitals of Coventry and Warwickshire and

Coventry Myton Hospice, WM(S) HIEC ACP Project Facilitator • Jo Poultney – WM(S) HIEC ACP Project Education Lead, Consultant in Palliative Medicine, Rugby Community

Palliative Care Team and Coventry Myton Hospice • Daniel Munday, Associate Clinical Professor in Palliative Medicine, WM(S) HIEC ACP Project Lead,

Coventry Clinical End of Life Care Lead, Consultant in Palliative Medicine, Coventry Community Palliative Care Team

• Angela Wall, Coventry Community Matron • Jan Furlong, Clinical Champion, WM(S) HIEC ACP Project • Jan Cooper, Principal Teaching Fellow/Deputy Director of Masters Programmes and CPD, Educational

Development & Research Team, Medical School, Warwick University • Margaret Bosworth, Myton representative for the WM(S) HIEC ACP Project • Natalie Adams, Lead Cancer and Palliative Care Nurse, South Warwickshire Foundation Trust • Steph Seeley, GP Rugby • Sue Kavanagh, Lead for Coventry Care Homes • Julia Grant, Consultant in Palliative Medicine, George Eliot Hospital and North Warwickshire Community • David Williams, GP, Shipston-upon-Stour • Lesley Williams, Coventry and Warwickshire Partnership Trust • Jackie Farrington, Head of Learning and Development, South Warwickshire Foundation Trust • Bev Ballinger, Head of Clinical Services, Shakespeare Hospice, Stratford-upon-Avon • Yvonne Botterill, Community Nursing, South Warwickshire Foundation Trust • Dr Chris Taggart, Coventry GP and GP Clinical Tutor • Veronica Nanton, Senior Research Fellow, WM(S) HIEC ACP Project, Warwick University • Siobhan Clarke and Eva Golubeva, SHA-funded Coventry and Warwickshire Advance Care Planning and

Communications project administrators, South Warwickshire Foundation Trust

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Appendix 5 – Coventry and Warwickshire End of Life Care (‘CASTLE’) Provider forum

Members of the CWEOLC Provider Forum:- Chair:

• Glen Burley, Chief Executive Officer of South Warwickshire Foundation Trust and Chair Coventry and Warwickshire End of Life Care Provider Forum

Local Medical Committee Representation: • Dr Jamie MacPherson, Coventry Local Medical Committee • Dr Andrew Kennedy, Warwickshire Local Medical Committee

South Warwickshire Foundation Trust • Professor Ian Philp, Medical Director of South Warwickshire Foundation Trust and NHS Warwickshire • Dr Mandy Barnett, Consultant in Palliative Medicine, South Warwickshire Foundation Trust • Natalie Adams, Lead Cancer and Palliative Care Nurse, South Warwickshire Foundation Trust

NHS Warwickshire Commissioning • Jo Blackburn, Project Lead, End of Life Care Community Commissioning Team, NHS Warwickshire • Dr Andrew Kennedy, GP Commissioner, NHS Warwickshire

NHS Warwickshire Providers • Dr Jo Poultney, Consultant in Palliative Medicine, Rugby Community Palliative Care Team and Coventry Myton

Hospice • Heather Goding, Lead Palliative Care Nurse, NHS Warwickshire

UHCW (University Hospitals of Coventry and Warwickshire) NHS Trust • Mr Andy Hardy, Chief Executive Officer, University Hospitals of Coventry and Warwickshire • Mr Richard Kennedy, Chief Medical Officer, University Hospitals of Coventry and Warwickshire • Dr Sarah MacLaran, Consultant in Palliative Medicine, University Hospitals of Coventry and Warwickshire • Helen West, Acting Cancer Services Manager, University Hospitals of Coventry and Warwickshire

George Eliot Hospital NHS Trust • Mr Andy Arnold, Medical Director, George Eliot Hospital • Dawn Wardell, Nursing Director, George Eliot Hospital • Dr Julia Grant, Consultant in Palliative Medicine, George Eliot Hospital and North Warwickshire Community

Palliative Care Team • Heather Norgrove, Director of Stakeholder Engagement, George Eliot Hospital

Coventry and Warwickshire Partnership Trust • Dr Daniel Munday, Associate Clinical Professor in Palliative Medicine, WM(S) HIEC ACP Project Lead,

Coventry Clinical End of Life Care Lead, Consultant in Palliative Medicine, Coventry • Lesley Williams, Head of Community Services Pathway, Coventry & Warwickshire Partnership Trust • Dr Val Robson, GP Coventry, GP Lead, Arden Cancer Network • Rachel Marshallsay, Lead Admiral Nurse, North Warwickshire, Coventry & Warwickshire Partnership Trust • Nigel Barton, Director of Operations, Coventry and Warwickshire Partnership Trust • Alison Hawley, Commissioning, Coventry and Warwickshire Partnership Trust

Paediatric Palliative Care • Angela Thompson, Associate Specialist, Palliative Care Lead Paediatrician Coventry and Warwickshire

Arden Cluster • Stephen Jones, Chief Executive Officer, Arden Cluster • Dr Francis Campbell, Medical Director – Primary Care, Arden Cluster • Mr Martin Lee, Medical Director – Acute, Arden Cluster • Fay Baillie, Director of Nursing, Arden Cluster

The Myton Hospices • Kate Lee, Chief Executive Officer, The Myton Hospices • Dr Carole Tallon, Medical Director, The Myton Hospices; South Warwickshire Community Consultant in

Palliative Medicine • Margot Emery, Director of Nursing and Care Services, The Myton Hospices • Judith Raper, Locum Consultant in Palliative Medicine, Warwick Myton Hospice

Shakespeare Hospice • Angie Arnold, Chief Executive Officer, Shakespeare Hospice, Stratford-upon-Avon • Bev Ballinger, Head of Clinical Services, Shakespeare Hospice, Stratford-upon-Avon

Mary Ann Evans Hospice • Liz Hancock, Chief Executive Officer, Mary Ann Evans Hospice, Nuneaton • Maggi Cole, Clinical Services Manager, Mary Ann Evans Hospice, Nuneaton

Arden Cancer Network • Dr Peter Handslip, Medical Director, Arden Cancer Network • Danielle Taylor, Nurse Director, Arden Cancer Network

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• Becky Whiteman, Macmillan Nurse Director: Clinical Quality and Care, Arden Cancer Network IT services

• Tim Berry, General Manager IT Projects, NHS Warwickshire ICT Services, South Warwickshire NHS Foundation Trust

• Duncan Robinson, Associate Director of IT NHS Warwickshire ICT Services, South Warwickshire NHS Foundation Trust

Appendix 6 – Acknowledgements Thank you in addition to the following people for their support with the development of this policy:- Abbas Khalifa Multi-faith chaplain, The Myton Hospices Alison Hampton Chaplain, The Myton Hospices and Shakespeare Hospice Stig Graham Chaplain and Spiritual Care Team Co-ordinator, The Myton Hospices The collaborators who assisted with developing the Supportive and Palliative Care Indicators Tool, the SPICT[TM] Tool for use in Coventry and Warwickshire as part of the West Midlands South Health Innovation and Education Cluster Advance Care Planning Project, WM(S) HIEC ACP Project:-

• Dr Prithwish Banerjee, Heart Failure Lead Consultant, UHCW NHS Trust • Miss C Marshall, Consultant Vascular Surgeon, UHCW NHS Trust • Dr Alison Franks, Consultant in Clinical Oncology and Palliative Medicine, UHCW NHS Trust • Dr Clive Irwin, Consultant in Clinical Oncology, UHCW NHS Trust • Dr David Bennett-Jones, Consultant Renal Physician, UHCW NHS Trust • Dr John Wong, Consultant in Gastroenterology and Hepatology, UHCW NHS Trust • Dr Colin Gelder, Consultant Respiratory Physician and Community COPD Lead, UHCW NHS Trust • Dr David Parr, Consultant Respiratory Physician, UHCW NHS Trust • Dr Andrea Lindahl, Consultant Neurologist, UHCW NHS Trust • Dr Karim Saad, Consultant in Old Age Psychiatry, Coventry and Warwickshire Partnership Trust, and West

Midlands Dementia Lead Individuals residing in Coventry and Warwickshire and their carers who kindly gave their precious time and comments to support with the development of this policy through the West Midlands South Health Innovation and Education Cluster (HIEC) Advance Care Planning Project.

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