Palliative and end of life care strategy: aims, principles and priorities

Overview

We have set up a Strategy Steering Group to oversee the development and delivery of a new palliative and end of life care strategy and associated work programmes. As part of this work, the Strategy Steering Group have developed the following aims, principles and priorities which the new strategy must work towards.

Overarching aims

• everyone in Scotland receives well-coordinated, timely and high-quality palliative care, care around death and bereavement support based on their needs and preferences including support for families and carers
• Scotland is a place where people and communities can come together to support each other, take action, and talk openly about planning ahead, serious illness, dying, death, and bereavement

Principles

Development and delivery of the Palliative and End of Life Care (PEOLC) Strategy reflects core values for health and social care in Scotland and aligns with other national policy initiatives, standards, recommendations, and best practice guidance. We are committed to:

• equitable and timely access to general palliative care and specialist palliative care services as needed by each person of any age living with any illnesses in all places
• a person-centred approach aligned with GIRFE (Getting it Right for Everyone) and delivery of personalised outcomes (What matters to you)
• understanding and responding to determinants of people’s experiences towards the end of life and in bereavement (including financial insecurity, housing, employment, and information in accessible formats)
• shared understanding, openness, and engagement with planning ahead (anticipatory care planning), palliative care, dying, death and bereavement among patients and families, service providers, educators, policy makers, and commissioners
• valuing, respecting, and nurturing the strengths of individuals and local communities as partners and leaders in supporting each other to improve experiences towards the end of life, including respect for diversity and promoting equity
• collaborative design with current and future service users - people with lived experience and their families and carers; those who will need palliative care and end of life care in future, and the wider population of Scotland
• care delivered by a multidisciplinary, multi-agency workforce that is trained and skilled, valued and supported
• demonstrating professionalism through the approach, behaviour, and attitudes of Realistic Medicine
• an inclusive, multi-sectoral and transdisciplinary partnership approach involving staff, managers, service providers and policy makers responsible for delivering specialist and general palliative care from statutory, independent, and third sector organisations, including volunteers
• fair, transparent, and ethical commissioning/funding processes
• an ongoing, delivery-focused strategy programme with measurable outcomes, milestones and evaluation continued beyond 5 years
• integration and alignment of palliative care within all related strategies and policies
• a ‘human rights’ approach where the standards and principles of human rights are integrated into policy and the running of organisations so people can access services and support without difficulty or obstruction
• UK, European and international palliative care partnerships, including with middle- and lower-income countries

Outline structure

The strategy development and delivery programme will include engagement and consultation on the following priorities:

• understanding and valuing what matters to patients/families and carers, and the wider public
• strategic leadership, partnerships, and accountability for all palliative and end of life care provision at national, regional, and local levels, and across statutory and third sector organisations
• integrated service planning, commissioning, and funding of specialist palliative care services for adults, young people and children in acute hospitals, community, hospice, and other care settings
• continuity and equity of access to paediatric palliative care and end of life care across all places of care for babies, children, and young people (including transition to adult services)
• meaningful and effective data and information gathering including mapping current and future provision and costs
• monitoring and evaluation, measurement of outcomes including people’s experiences, and economic evaluation
• building, training, and sustaining the workforce through education for everyone delivering palliative care across health and social care; and support for them as people dealing with dying, death, loss, and bereavement
• person-centred care planning and care coordination – anticipatory care planning (ACP), digital health records
• support for nationally recognised guidance and resources (e.g., Scottish palliative care guidelines for adults and children/young people, devices, and care after death including confirmation of death)
• timely, all-hours access to care and advice, and medicines and equipment required for patient safety and dignity
• public health palliative care (including compassionate communities/social networks), and health literacy
• new technology, and emerging care models (e.g., supportive palliative care in cancer and renal medicine)
• innovation, continuous quality improvement, and research

Engagement with delivery partners through the steering group, reference group, working groups and associated networks as well as people with lived experience informs each of these key areas.

Engagement will incorporate implications of and contributions to development of the National Care Service, the Care Homes Framework and other programmes within the Care and Wellbeing Portfolio (including place of care, preventive and proactive care, integrated planned care, and integrated urgent and unscheduled care).

How we will develop and deliver this strategy

A whole system, public health approach to service planning/development requires:

Background data

Identification of a ‘defined’ population, and mapping holistic care and support needs that take account of diverse patient journeys and predicted increases in demand for palliative care in Scotland:

• development of a ‘value framework’ describing important outcomes for patients, families and carers, professionals, and delivery providers, and how to measure them
• mapping of specialist palliative care service models and funding across Scotland, both statutory and third sector, to identify best practice examples to build and spread
• mapping of current service provision and resource use/ budget allocations for ‘general’ palliative care across sectors and places of care (including primary care, social care, care homes, cancer services, acute hospital specialities, supportive care models, and hospital based complex clinical care, both in-hours and out-of-hours

Leadership, commitment, collaboration, and accountability - nationally and locally

• national recognition of the importance of palliative care, care around death, loss and bereavement in Scotland
• partnerships and consensus building through a range of trans-organisational networks/partnerships responsible and accountable for resource use, and which have a culture of stewardship of all resources within the system
• integration of health care, social care, third sector provision, voluntary and community-led support, in the context of a new National Care Service
• prioritisation of equitable planning and integrated commissioning of palliative care services in acute hospitals, community, care home, care at home, hospice and other third sector settings
• development of sustainable infrastructures and an ongoing delivery programme
• local and national education, training, and support to enable the workforce (specialist and general providers) to deliver care
• agreement of quality standards and related programmes of improvement and assurance
• data-driven development, implementation and evaluation including population data gathering and monitoring, national minimum datasets, service evaluation, economic analysis, and outcomes data

Public involvement and collaboration with service users including carers

Public consultation and involvement are integral to development and delivery of the strategy. This includes the values, preferences, and priorities of:

• people with a serious illness (e.g. cancer; declining organ function - lung, heart, kidneys, liver; progressive neurological conditions; major stroke
• people with underlying conditions and physical and/or mental health problems complicating one main serious illness and/or several advanced, progressive illnesses (multimorbidity)
• older people with frailty and/or dementia
• people with learning disabilities
• babies, children and young people with life-limiting and life-threatening conditions and their families
• young people experiencing transitions to adult palliative care services
• carers - including family members, close friends, and parents; bereaved people
• people with additional risks and challenges (e.g., homelessness/ vulnerably housed people, substance dependency, financial insecurity, prisoners, refugees)
• bereaved people including children and young people
• patient/carer support and advocacy groups; volunteers; teachers/educators, and the wider public

Public health palliative care

This approach creates opportunities for community-led developments that include:

• fostering cultures and opportunities where living with serious illness or declining health, dying and bereavement are discussed openly
• strengthening community action, equipping people with skills, knowledge, networks, resources, confidence, and opportunities to support each other
• providing information and education to allow people to develop their personal skills and knowledge relating to serious illness, dying, death and bereavement
• ensuring public policies make provisions for ill health, dying, loss and caring
• ensuring health and social care services promote education and empowerment of individuals and communities relating to serious illness, dying, and bereavement