Palliative care strategy: Palliative Care Matters for All

Outcome 3: National and local leaders will have access to relevant data to inform planning and delivery of services, and will put in place improved ways to monitor and evaluate the outcomes and experiences of children and adults receiving palliative care, as well as their families and carers.

People's experiences of palliative care

In the past, an indicator of a "good death" has been place of care, with national data collection and service outcomes focussed on this and time spent at home in the final months of life. This is based on the premise that dying at home is what most people would choose. However, while most people say they prefer to be at home or in a homely setting as much as possible, this can often change closer to dying.

Various systems and tools, including Care Opinion, patient-reported experience measures (PREMs) and patient reported outcomes (PROMS), are being used to collect information about people's experiences of palliative care services. National tools, such as the Person-centred Framework, are also in development. However, at present this type of information is not collected and analysed routinely at a national level for palliative care.

We need to understand, measure and learn from people's experiences of palliative care, care around dying and bereavement to improve the quality of outcomes for adults and children, families and carers.

Planning and delivery of services

Having accurate, up to date, readily available data will enable service planners to improve adult, paediatric and neonatal palliative care services now and in the future.

Public Health Scotland (PHS) publishes annual information on the percentage of time that people of all ages spend at home or in a community setting in the last six months of life, as well as on place and causes of death. This data is available through a data dashboard to inform local planning for adult palliative care services.

While we have some data from PHS on location of death and the numbers of children living with serious health conditions from the 2018/19 Children in Scotland Requiring Palliative Care 3 (CHiSP3) study and the strategy paediatric palliative care survey, there is currently no national data collection system for children's palliative care. Data on the needs of individual children, their families and carers, and service provision from general paediatric and specialist paediatric palliative care services, along with activity data, should be collected and reported at a national level.

Few HSCPs or Health Boards report having a dedicated resource for managing, reporting or collecting data on palliative care and care around dying^[14]. Where HSCPs have analytical support, they can bring together and utilise data with their partners to improve care and experiences across whole systems.

HSCPs and Health Boards report a need to improve the systems for accessing population data, as well as its usefulness for Health Boards and HSCPs. Whilst they use the current national data on palliative care, they need better access to local population data and local analytical support, and more clarity on what data and data sets should be collected for consistency; minimum data sets; quantitative and qualitative data; and how data is reported. This would enable them to plan better how their resources should be used.

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:

3.1. Work with PHS, Health Boards, HSCPs and other key partners, including paediatric palliative care planners and service providers, across all sectors to improve the quality and range of palliative care data collected, analysed and reported. Such data can be used to inform improvement, experiences and delivery of palliative care for adults and children, families and carers. This includes:

• updating and improving the existing adult palliative care population data reporting systems; and providing access for service planners and health and care staff.
• developing a national approach to data collection on paediatric palliative care services for babies, children and young people (0 -18 years) and developing a new dashboard that can be accessed by paediatric palliative care service planners and health and care staff.
• development of a Scottish minimum data set for all adult specialist palliative care services.
• development of a Scottish minimum data set for all paediatric and neonatal specialist palliative care services and transitions.
• working with HSCPs and Health Boards to develop a data template that supports them to collect, analyse and report high quality data on general palliative care and specialist palliative care services delivered to adults, children and young people for service planning and improvement, which includes user experiences in all places of care.

3.2. Explore evidence based and emerging co-design approaches to hearing and measuring people's experiences of palliative care, care around dying and bereavement support in palliative care for all places of care, and establish a consistent national approach to help improve these experiences.