My Health, My Care, My Home - healthcare framework for adults living in care homes: summary

6. Palliative and End of Life Care

Enabling a person-centred and holistic approach to health and care when curative treatments are no longer possible and length of remaining life is reducing.

Palliative care supports people to have a good quality of life even when faced with serious, irreversible and progressive health conditions. 'End of life care' is also an important part of palliative care which addresses the physical, social, emotional, spiritual and accommodation needs of people who are approaching death.

Many adults and most older people living in care homes will benefit from a palliative approach to their care, which can be enabled and provided by members of the individual's family and community, and all the health and social professionals who have responsibilities for the person's care.

Social care staff working within care homes have a wealth of experience and expertise in adopting a palliative approach to care, and supporting someone who is nearing the end of their life. However, there may still be occasions when advice and support is required from Primary Care and specialist palliative care services. Health and Social Care Partnerships have responsibility to ensure that these specialist services are in place and easily available.

It is important to be able to identify individuals whose health is at risk of deterioration at an early stage to allow early and proactive assessment and delivery of the most appropriate care. Assessing symptoms can be particularly difficult where there is associated cognitive impairment, and there is a risk of diagnostic overshadowing, whereby physical symptoms such as pain are not recognised, and instead incorrectly attributed to dementia.

There is wide variation in access to specialist palliative care across Scotland. NHS boards should ensure that specialist palliative care services are available for the care homes in their area, as set out in the advice note on Strategic Commissioning of Palliative and End of Life Care by Integration Authorities. It is particularly important that families and friends are kept informed, involved and supported as their loved one approaches the end of their life.

Scotland's first bereavement charter was published in April 2020. This describes what good bereavement support and care looks like. This bereavement charter is particularly pertinent to people who live and work within care homes and should be used to guide the support that is offered to those who are bereaved.

Recommendations

• 6.1 Care homes should consider how they can incorporate identification tools and assessments within normal practice to help identify people who may require a palliative approach to their care, and support the individual as their health needs change.
• 6.2 Provide training in the use of appropriate symptom assessment tools, and enable early involvement of dementia link workers to ensure that those living with dementia receive the care and treatment they require.
• 6.3 Anticipatory Care Plans should be reviewed as people are nearing the end of life to ensure they are firmly rooted in a clear understanding of the values, beliefs and preferences of the individual.
• 6.4 Care home providers should use the 'enriching and improving experience' framework to identify need and plan the learning and development of their employed staff in relation to palliative and end of life care.

6.5 HSCPs and NHS boards should ensure that there is a specialist palliative care service available and easily accessible to the MDT, and these services should foster close "co-working" and "shared learning" relationships.

6.6 Care home providers and specialist palliative care teams should work together to explore shared learning and peer support opportunities, through initiatives such as Project Echo.

6.7 GPs and other members of the MDT should be available to support the care home staff with end of life care, and speak with relatives when required.

6.8 Dedicated out of hours palliative care lines, allowing direct and fast access to community nursing and medical staff for people who are nearing the end of life, should be available in all HSCPs.

6.9 There should be prompt access to appropriate medication (including anticipatory 'just in case medication' and oxygen) and equipment, such as syringe pumps and pressure relieving mattresses.

6.10 Scotland's bereavement charter should be adopted by all those working in and with care homes and used to guide the support that is offered to those who are bereaved.