Living and Dying Well: Building on Progress

5 Working Group progress and recommendations

28 One of the key actions arising from Living and Dying Well¹ was the establishment of a series of short life working groups ( SLWGs) to undertake collaborative and development work and make recommendations to the National Advisory Group on a number of areas identified as requiring further detailed consideration. The majority of this work is now complete.

29 Six SLWGs (numbers 2-7 below) were formed, drawing their membership from across relevant areas of health and social care and beyond. Their progress may be summarised as follows:

Standards for Palliative and End of Life Care in Scotland

30 The establishment of this group, SLWG 1, was deferred pending the outcomes of some of the other working groups, and will now be subsumed within the plans for continuous quality improvement previously outlined.

Palliative and End of Life Care Guidelines

31 National palliative and end of life care guidelines were considered by SLWG 2, which recognised that the relative absence of good quality evidence in this area made it difficult to create national guidelines using a process such as the Scottish Intercollegiate Guidelines Network ( SIGN). Instead, the group mapped the availability of existing palliative and end of life care guidelines within NHS Boards and found that while several Board areas had developed and maintained their own set of guidelines, the availability of such guidance across Scotland was variable. The group decided that rather than set up and maintain a process for agreeing national guidance, there should be an agreed list of topics for which NHS Boards should provide guidelines. In consultation with NHS Boards, SLWG 2 has therefore developed a list of 30 core topics for which guidelines should be available in all NHS Board areas (see Appendix 1).

Action 2

NHS Boards with key stakeholders should review the recommendations within the final report of SLWG 2 (see Appendix 1) and update as necessary their Living and Dying Well¹ Delivery Plans to ensure that guidance on all the core topic areas identified in the report is available throughout the Board area.

Action 3

To support the implementation of Building on Progress NHS Quality Improvement Scotland will work with NHS Boards and the Scottish Partnership for Palliative Care to agree a national guideline in each topic area and a mechanism for reviewing and updating its content in the light of developing evidence and expertise. NHS Boards who do not currently have their own guidelines should use those of NHS Lothian in the meantime. www.palliativecareguidelines.scot.nhs.uk

Referral Criteria to Specialist Palliative Care

32 SLWG 2 also addressed the issue of consistent and appropriate referral to specialist palliative care. The group agreed that referrals should be made on the basis of need rather than diagnosis, in situations where generalist practitioners require specialist advice on the patient's complex needs. Referrals should also be made in a manner which reflects the diversity of people's life circumstances, whether they relate to age, disability, gender, race, religion/belief or sexual orientation. SLWG 2 undertook a literature search, surveyed NHS Boards, voluntary hospices and key stakeholders, and collated referral criteria currently in use to produce a set of criteria recommended for use in all NHS Boards in the future (see Appendix 1).

Action 4

NHS Boards should review the recommendations within final report of SLWG 2 (see Appendix 1) and update as necessary their Living and Dying Well¹ Delivery Plans to ensure their current criteria for referral to specialist palliative care reflect the recommendations.

Recommendations for Assessment Tools

33 Living and Dying Well¹ recognised that the key to providing appropriate palliative and end of life care is first of all to identify those likely to benefit from it, and then to initiate a cyclical process of assessment and review to determine the ongoing palliative care needs of patients and their families. This may be at any time from the point of diagnosis, at the point of actual or anticipated deterioration, or on presentation of difficult or complex symptoms. In each of these cases, the consistent use of appropriate assessment tools is essential. To ensure a coherent national approach to this issue, SLWG 3 was established to develop recommendations regarding:

• assessment tools for early identification of patients who may need palliative care
• assessment tools to identify patients with increasing palliative care needs
• assessment tools for symptoms.

34 In their exploration of each of these areas, the group undertook extensive literature reviews and consultation with NHS Boards. Their final report presents detailed recommendations on particular tools and their use. These are summarised in the Actions below and included in the Appendices.

Action 5

NHS Boards should review the recommendations within final report of SLWG 3 (Assessment Tools - (see Appendix 3) and update as necessary their Living and Dying Well¹ Delivery Plans, the recommendations include:

• all relevant staff and contractors are aware of the Gold Standards Framework - Prognostic Indicator Guidance ( GSF- PIG) as a tool for identifying patients with increasing palliative care needs and limited prognosis. In addition, the Supportive and Palliative Care Indicator Tool ( SPICT) - (see Appendix 2) developed by the University of Edinburgh and NHS Lothian, can be used to help identify patients for holistic assessment.
• NHS Boards should ensure that tools to identify patients with increasing palliative care needs, such as, the Palliative Performance Scale version 2 ( PPS v2) (see Appendix 4) are adopted to identify changing dependency and increasing support and palliative care needs in all settings including acute hospitals, community hospitals, hospices and care homes.
• NHS Boards should ensure the use of appropriate tools for symptom assessment, such as:
  • The Edmonton Symptom Assessment Scale ( ESAS) - (see Appendix 5)
    M.D. Anderson Symptom Inventory ( MDASI) - (see Appendix 6)
    Condensed Memorial Symptom Assessment Scale ( CMSAS) - (see Appendix 7)
    The Cambridge Palliative Assessment Schedule ( CAMPAS-R) - (see Appendix 8)

35 Appropriate assessment of palliative and end of life care needs in turn allows for a more person-centred approach and the appropriate planning of care. Living and Dying Well¹ recognised that pro-active care planning can enhance quality of life and help to prevent crises and unscheduled hospital admissions. It also gives healthcare professionals the opportunity to listen to patients and families and to develop a shared understanding of their needs and goals in a relationship based on empathy and mutual respect. Without this, the implementation of a high quality/appropriate palliative care approach is not possible.

Advance Care Planning

36 SLWG 3 was tasked with the additional remit of producing recommendations on advance care planning. A sub-group was formed to advise on a consistent approach and to provide clarity in the face of the existing variety of documentation in use. This group examined the concept of advance care planning, reviewed evidence and best practice, and consulted widely. It also worked with the Long Term Conditions Collaborative ⁵ on guidance and recommendations on the development and sharing of anticipatory care plans.

37 The group's final report (see Appendix 9) distinguishes between the philosophy of advance care planning and the process/practicality of completion of an anticipatory care plan. The group proposes the following working definition of advance care planning:

• " Advance care planning, as a philosophy, promotes discussion in which individuals, their care providers and often those close to them, make decisions with respect to their future health or personal and practical aspects of care."

38 Advance care planning (often referred to as ACP) means adopting a "thinking ahead" philosophy of care that allows practitioners and their teams to work with patients and those close to them to set and achieve common goals that will ensure the right thing being done at the right time, by the right person, with the right outcome, to the right quality standard. It is important to note that, as with any decision-making and consent process, the capacity of the patient is taken into consideration and the Adults with Incapacity (Scotland) Act applied accordingly. Advance care planning can facilitate a patient's previously expressed wishes about what is to happen to them at the end of life, by informing decision making when he/she is no longer able to communicate.

39 The GMC (2010) ¹² advises advance care planning for patients in whom loss of capacity is expected. An anticipatory care plan is the document which captures the outputs from these discussions, and which should, with the patient's consent, be shared in cross-care settings with others involved in his/her care. The electronic palliative care summary and the SBAR tool (Situation/Background/Assessment/Recommendations) are examples of documentation which may form an anticipatory care plan and include the core elements (hyperlink). The group has provided within its final report an example toolkit on how to document the outcome of applying the concept of Advance Care Planning and a set of guidance for local teams under the heading Anticipatory Care Planning: Frequently asked questions (see Appendix 9).

40 The group concludes in its final report that the philosophy of advance care planning needs to be accepted as an overall concept, covering an umbrella of terms and processes, and including anticipatory care planning for patients with long term conditions. This aim is echoed in the Healthcare Quality Strategy⁴ and in the key Quality Ambition of mutually beneficial partnerships between patients and families and those delivering services which respect individual needs and values and demonstrate compassion, continuity, clear communication and shared decision-making. The group's recommendations towards bringing this about are reflected in the Actions below.

Action 6

NHS Boards with key stakeholders should review the recommendations within the final report of SLWG 3 (Advance/Anticipatory Care Planning - (see Appendix 9) and update as necessary their Living and Dying Well¹ Delivery Plans, the recommendations include:

• anticipatory care plans include the core components, such as the electronic palliative care summary and SBAR are in place for patients with both malignant and non-malignant disease
• with the appropriate patient consent they are shared with and accessed by all health and social care professionals working with the patient and family.

Action 7

NHS Education for Scotland and NHS Boards should work together to plan and implement a co-ordinated, staged approach to the acquisition by relevant staff of the necessary skills and confidence to initiate sensitive communication by:

• identifying a lead in each Board area to co-ordinate the education/implementation process over a two- to three-year period
• providing sessions to multi-disciplinary groups on advance/anticipatory planning that includes communication skills to enable health professionals to focus on shared decision-making
• providing sessions to particular teams with identified operational leads taking forward the implementation process.

Action 8

NHS Quality Improvement Scotland and NHS Boards should work together to carry out formal audit and evaluation of the consistent use and the outcomes of anticipatory care planning documentation for example, ePCS and SBAR.

Information for Patients and Carers

41 If patients and carers are to become full partners in decision-making and the planning of care, it is essential that appropriate, timely and easily accessible information is available to them. SLWG 4 was therefore set up as a National Palliative Care Patient and Carer Information Project. Following a successful bid by NHS Forth Valley for Scottish Government Living and Dying Well¹ funding, a project manager was appointed to take the work forward. Core and reference groups were established with key representation from Scottish Government, NHS and national voluntary organisations, and project phases and objectives were agreed as follows:

• obtaining patient, carer and healthcare professional's perspectives in terms of types of information required
• scoping of existing information resources and similar projects
• design and pilot of patient and carer information
• final production, launch and public awareness-raising
• exit strategy.

42 Considerable progress has now been made, and following feedback on pilot materials the project will go live in the near future. An integrated approach to patient and carer information has been assured through the links established with a number of key organisations and initiatives and the list of topics to be included in the final resource has been agreed. It is established that the final outcome will be a web-based resource, hosted by NHS Inform (see Additional Resources). The content will be reviewed and updated as appropriate by the Scottish Partnership for Palliative Care, in consultation with key stakeholders.

Palliative and End of Life Care in Acute Setting

43 The Scottish Government aims to provide consistently high quality palliative and end of life care to everyone in Scotland who needs it in every care setting. The particular significance of hospital care during the last five years of life, and thus in the implementation of Living and Dying Well¹, has been previously noted. Part of that implementation was the setting up of SLWG 5 to develop recommendations on the delivery of palliative and end of life care in acute care settings. For the purpose of the SLWG report, an acute hospital is defined as one to which patients with serious illness can be admitted as an emergency for assessment diagnosis and treatment.

44 Palliative care in the UK has traditionally been community focussed, originating in independent or NHS funded hospices which were often physically separate from acute hospitals. The provision of good quality palliative care is a core function of hospitals. Every hospital admission to an acute hospital of a patient with an advanced illness is an essential opportunity to assess the patients' palliative care needs. These needs may include symptom control, information about their illness in addition to current and future care plans - well in advance of the patient reaching the last few days of life. Clear documentation and transfer of this information to other care settings will support the continued planning and delivery of palliative and end of life care.

45 For the aims of Living and Dying Well¹ to be achieved in hospitals, the SLWG report highlights the importance of embedding palliative care in the culture and practice of acute hospitals across Scotland. The report goes on to recommend how this can be achieved through a clear structure that includes the development of a Acute Hospital Palliative Care Service.

46 The Acute Hospital Palliative Care Service is defined as a structured planned service or programme by which palliative care is provided by acute hospital staff, involving specialist palliative care when necessary. In many hospitals this will involve mixed models of hospice/hospital service provision depending on the local situation.

47 Following extensive consultation, this group has made a series of recommendations.

Action 9

NHS Boards should review the recommendations within the final report of SLWG 5 (see Appendix 10) and update, as necessary, their Living and Dying Well¹ Delivery Plans, the recommendations include:

• All acute hospitals should have a clear organisational structure by which to implement Living and Dying Well¹. This should be planned and supported by an Acute Hospital Palliative Care Service that (a) supports all hospital staff to deliver palliative care and (b) provides a specialist service for those with complex needs. The Hospital Palliative Care Service should facilitate and lead the implementation of actions 2-9 within the report.
• The Scottish Partnership for Palliative Care will set up a National Group for Palliative Care in Hospitals to provide support for the implementation of SLWG 5 recommendations. This may include providing advice, guidance, disseminating learning and sharing good practice.

Service Configurations to Meet the Needs of Adolescents and Young Adults with Palliative and End of Life Care Needs

48 Living and Dying Well¹ aims to ensure a cohesive and consistent approach to palliative and end of life care based on clinical need regardless of diagnosis or of age. The specific needs of adolescents and young adults have been addressed by SLWG 6 which was set up to examine the following areas:

• examining and making recommendations on the service configurations necessary to meet the palliative care needs of adolescents and young adults
• ensuring continuity as young people move into adult services, including adult palliative care services
• providing guidance to improve the quality of care at the end of life to this same group of individuals.

49 This group included input from young people who have palliative care needs and a parent whose child died in young adulthood, as well as from social work and health professionals. A survey of NHS Boards was undertaken to obtain a picture of current services addressing the needs of young adolescents and young adults with palliative and end of life needs and good practice identified informed the group's final recommendations (see Appendix 11). The group has noted in its final report that effective provision of care for this age group demands adaptation and preparation from professionals working in both children's and adult services, and that integration with other Scottish Government national policies such as Delivering a Healthy Future¹⁵ and Getting it Right for Every Child⁸ will facilitate and enhance such collaboration.

Action 10

NHS Boards should review the final report of SLWG 6 (see Appendix 11) - and update as necessary their Living and Dying Well¹ Delivery Plans to ensure the recommendations within the report are addressed.

Action 11

NHS Education for Scotland, NHS Quality Improvement Scotland and the Scottish Partnership for Palliative Care should work in partnership to support the implementation of SLWG 6 recommendations, specifically; NHS Education for Scotland should:

• continue to develop educational resources about the care of adolescents and young people
• further develop the Managed Knowledge Network ( MKN) for all staff working in Scotland with an interest in young people's health.

Exploration of Ideas and Issues Addressing Palliative and End of Life Care from a Public Health and Health Promotion Perspective

50 Living and Dying Well¹ recognised that the provision of palliative and end of life care is influenced by the social and cultural context in which it takes place. It also noted that cultural resistance in modern western societies to acknowledging the reality of death and dying as inevitable and integral parts of life, and reluctance to discuss these, can contribute to poor communication and planning of end of life care. SLWG 7 was therefore established to explore public attitudes to care, loss, dying, death and bereavement and to consider what approaches might be taken in this area to underpin improvements in palliative and end of life care.

51 Many people are denied the opportunity they may wish for to discuss and plan for their death and dying. There is limited general understanding of the long term effects of bereavement and loss, together with a lack of opportunity to share common experiences. The group reported that there are potential benefits to be derived from a more open approach to these issues - for society, its public services and communities, and for individuals. SLWG 7 developed a vision of a Scottish society in which:

• people are able to talk about death and deal with related issues in a constructive way
• children grow up treating dying as an inevitable part of ordinary life
• people are comfortable using words such as 'death', 'dead', and 'dying' and are able to make choices relating to their own dying and death
• health and social care professionals and volunteers in all care settings feel able to have discussions relating to death, dying and bereavement with patients and families, and with colleagues
• communities of all kinds are empowered to provide effective support to those dealing with death, dying, bereavement and loss.

52 SLWG 7 explored the potential of public health and health promoting approaches to these issues and consulted widely on its vision and on suggested approaches to bringing it about. The group's final report notes the Healthcare Quality Strategy⁴ ambition to improve person-centredness by delivering care based on mutually empathic relationships between staff, patients, carers and families and points out that for such developments to occur in the context of palliative and end of life care, and for appropriate advance/anticipatory care planning and effective person-centred care and support to be in place for everyone, there needs to be a culture of open discussion about death, dying and bereavement. Staff must be comfortable addressing 'difficult' issues and patients must feel comfortable in expressing choices and feelings in the context of such discussions. The report makes ten recommendations (see Appendix 12) towards achieving these aims, including the recommendation that a broad-based coalition be established to lead and co-ordinate further work in this area, and tasked in particular with raising public awareness and promoting community involvement in the issues of death, dying and bereavement across central and local government and appropriate agencies and organisations in all sectors of Scotland's multi-cultural and multi-faith society.

Action 12

The Scottish Partnership for Palliative Care should facilitate and lead the establishment of a broad-based coalition to take forward the work recommended by SLWG 7 (see Appendix 12).