Review of targets and indicators for health and social care in Scotland

End of life care

Expenditure on end of life care – In development ( HSCII)

Proportion of last 6 months of life spent at home or in community setting

Improve end of life care ( HSCII)

113. Palliative and end of life care are often grouped together. Here Palliative Care is understood to mean the provision of good care to people whose health is in irreversible decline, with any illness or condition, whose lives are coming to an inevitable close; they may continue to live life well, with their symptoms alleviated through good care for a period which may extend for months or even years. The care provided includes but is not limited to specialist palliative care. Palliative care includes, but is not limited to end of life care, which is about supporting people as they enter the process of dying.

114. At present, the indicator for improved palliative and end of life care is the proportion of the last six months of life spent at home or community setting. This indicator says little about the quality of care. In December 2015, the Scottish Government published the Strategic Framework for Action on Palliative and End of Life Care (SFA). It sets out a vision for the next five years, outcomes and ten commitments to support improvements in the delivery of palliative and end of life care across Scotland. One of the commitments in the SFA is to support improvements in the collection, analysis, interpretation and dissemination of data and evidence relating to needs, provision, activity, indicators and outcomes in respect of palliative and end of life care.

115. Another of the commitments relates to ehealth support for the effective sharing of end of life/Anticipatory Care Planning conversations. In this context there may be opportunities to make use of the Key Information Summary, which is currently the best available vehicle for making Anticipatory Care Plans available across services. These should arise from conversations with people about what matters to them. The commitment in the Health and Social Care Delivery Plan, published in December 2017, that all who could benefit from a Key Information Summary should have one by 2021, offers an opportunity to highlight the presence of these as an indicator of the quality of palliative and end of life care for those nearing death.

116. In addition, the palliative and end of life care clinical community has developed guidelines which are used as the key benchmark for good clinical practice in this area.

117. Recommendations:

a) Integration Authorities should be provided with data on the provision and quality of services for palliative and end of life care in their areas. Regular review of the impact of guidelines should take place.

b) The Key Information Summary, or its successor, might provide a useful driver for the place of the conversations around 'what matters to you', and therefore shared and supported decision making - and their recording in a shareable format.