Palliative care strategy: Palliative Care Matters for All

Outcome 5: Adults living with serious or life-threatening illnesses and children with serious health conditions will be offered person-centred future care planning involving their families and carers, and care plans will be recorded and shared using national digital systems

Future care planning

Future care planning is about supporting adults and children, their families and carers to think and plan ahead for changes in their life, health and care. It can be relevant for anyone whose health or care needs might change due to their health conditions or disabilities, but is particularly helpful for adults with serious or life-threatening illnesses or children with a serious health condition. It is an integral part of palliative care that focuses on each adult or child and what matters for them now and in the future. Future care planning includes, and involves, the people important to the adult or child, such as family, carers, parents and support workers.

Scotland's Future Care Planning Programme aims to improve person-centred care coordination and urgent care across the health and care system in all Health Boards. This is an iterative programme of national work based on consultations and engagement with many stakeholders, including members of the public; service users; health and social care staff; national and third sector organisations for adults and children; and policy makers.

Future care planning differs from anticipatory or advance care planning in important ways. Whilst these were mainly healthcare plans that invited people to express choices and wishes about future loss of capacity, care when dying and cardiopulmonary resuscitation, future care planning accepts and manages the inherent uncertainties of the illness journeys experienced by each adult, child or young person.

Future care planning discussions around what matters to an adult or child in their life, health and care open up wider conversations that include making personalised plans for treatment and care options to guide future decisions. This is particularly important when an adult or child might need urgent help from unscheduled healthcare services or emergency social care, and matters well before they are dying.

Future care planning continues through transitions from children's services into adult health and care. It can include other aspects of life relevant to palliative care, like managing finances; making a will; plans for a pet or property; or digital legacy planning.

It is important for future care planning to be tailored to the individual and to take account of human rights; legal position; and the roles of proxy decision makers, if the person is a child or an adult with impairments that affect their capacity to make health and care decisions now or in the future. These legal proxies include parents and carers with parental responsibility, guardians, and people named in a welfare Power of Attorney.

Digital recording and sharing of care plans are key, whether adults and children are at home; in hospital; in a palliative care unit or hospice; in a care home; or in another place of care.

Future care planning in the community

Future care planning in the community may start when an adult or child is well or stable, but could need urgent support or help in the future, and the plans can change with them over time. Future care planning covers a range of different health and care plans, but our initial focus is on integrated, urgent health and care plans, and draws on existing projects from across Scotland. Many different health and social care staff can contribute to conversations about future care planning if they are supported and trained, reducing workload for GPs. Community groups, third sector organisations and volunteers can offer support and advice too.

A person-centred care plan summarises what matters to the adult or child and anything staff providing urgent or emergency care need to know about them, alongside important clinical advice and social care information provided by experienced staff who usually care for them. Existing care plans inform treatment and care if the adult or child is admitted to hospital, where the focus of care planning shifts to a detailed clinical treatment plan tailored to that admission. Continuity of care on discharge home or to a care home can be improved by updating or starting a community care plan.

Future care plans recorded digitally, using national digital platform technology and different user applications (including a person-held version), can be linked to other health and care records in the community, care homes, hospices and hospitals to enable the person's plans to be recorded, updated and shared with relevant health and social care staff.

Since 2016, the NHS Scotland Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) integrated adult policy^[23] and Children/Young People Acute Deterioration Management (CYPADM) guidance have provided a clear, national framework for decision making, communication and recording on standard paper forms. Health and care records are increasingly digital, so the Future Care Planning Group^[24] will be considering how best to record and share cardiopulmonary resuscitation plans and other emergency treatment measures for adults, children and young people transitioning to adult services via digital systems.

As part of the finalisation of the strategy and development of the delivery plan, Scottish Government will work with delivery partners to further develop the following proposed actions, timings and appropriate governance arrangements:

5.1. Support a national partnership programme for future care planning, overseen by the National Future Care Planning Working Group, that is person-centred, inclusive and takes a 'Once for Scotland' and 'digital' approach to development and delivery for children, young people and adults whose life, health or care may change, and which is suitable for all places of care.

5.2. Continue to work with NHS Education for Scotland (NES) Digital, and other national organisations and partners, to develop and implement a national electronic urgent and emergency care plan for health and social care, accessible to staff working in the community, NHS unscheduled care services and hospitals in all Health Boards, starting with health care staff and extending to social care staff, care homes and independent hospices.

5.3. Continue to work with NES Digital, other national organisations and partners to develop and implement a national electronic hospital urgent care plan to improve treatment and care during a single hospital admission, that connects digitally with community urgent and emergency care plans.

5.4. Continue to work with NES, and other national organisations and partners, to develop and deliver national education and implementation resources on future care planning for use across Scotland.

5.5. Promote future care planning across all sectors and involve a wide range of stakeholders, including members of the public; adults; young people; families; parents and carers; minority groups; patient support groups; and third sector organisations, in the development and delivery of accessible and inclusive resources and information about future care planning.