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

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. Effective palliative care can prevent and relieve suffering through the early identification, accurate assessment and management of pain and other problems, whether physical, psychosocial or spiritual.

'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.

Provision of palliative care

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

Identification of those who need palliative care

It is important to be able to identify individuals whose health is at risk of deterioration at an early stage. This will allow early and proactive assessment and delivery of the most appropriate care. Healthcare Improvement Scotland (HIS) has published various tools which have enabled earlier identification of those who may benefit from a palliative approach to their care. The SPICT (Supportive and Palliative Care Indicators Tool) and PPS (Palliative Performance Scale v2) have both been adopted successfully within some care homes in Scotland for this purpose. Glasgow City's Riverside Care Home used the PPS along with a Supportive Palliative Action Register to assist staff in identifying any change or decline within people living in their care home. Care home staff should consider how they can incorporate such tools and assessments within normal practice to help identify people that may be at risk of deterioration.

Assessing symptoms/needs and planning

Assessing symptoms can be particularly difficult where there is associated cognitive impairment, such as in the context of delirium or dementia. There is a risk of diagnostic overshadowing, whereby physical symptoms such as pain are not recognised and instead changes in behaviours are incorrectly attributed to dementia. Families, friends and the care home team are key to recognising distress, from their knowledge of the person and their normal patterns of behaviour. Other health and social care staff, who do not know the individual as well, must listen to the concerns of those that are closest to the person. Training in the use of appropriate symptom assessment tools (e.g. Doloplus-2 or the Abbey Pain Scale), and early involvement of dementia link workers can help ensure that those living with dementia receive the care and treatment they require.

Distress and suffering is not just about pain and other physical symptoms. Careful consideration must be given to all 4 domains of palliative care, including any psychological, spiritual and social factors which may be contributing to distress. Adopting a holistic approach to assessment and care is of prime importance, and can be aided by tools such as the HOPE approach to spiritual assessment.

A co-ordinated MDT approach to care is important at the end of life. Anticipatory Care Plans should be reviewed to ensure they are firmly rooted in a clear understanding of the values, beliefs and preferences of the individual. This may include the discontinuation of unnecessary medication and a review of treatment goals, including sensitive discussion around cardiopulmonary resuscitation (CPR).

What skills and knowledge are needed to provide palliative care?

Scottish Social Services Council and NHS Education for Scotland has published 'Enriching and improving experience', a framework to support the learning and development needs of the health and social service workforce in Scotland. They have identified five domains which reflect the core knowledge and skills considered integral to the delivery of high-quality palliative and end of life care. Each domain presents four levels of knowledge, skills and experience that outline what health and care workers need to know and do. People working in care homes and their employers should use this framework to identify learning needs in relation to palliative and end of life care.

The Scottish Palliative Care Guidelines have been developed by a multi-disciplinary group of professionals and provide practical, evidence-based or best-practice guidance on a range of symptoms and other palliative care issues. These include guidance on assessing pain in people living with cognitive impairment.

Accessing specialist palliative care services when required

Most of the care for someone who is approaching the end of their life can be provided with compassion, skill and knowledge by the care home team. However, sometimes symptoms will be more troublesome, or there may be other complex factors involved in providing care. In these circumstances the wider MDT should be involved, including timely intervention from specialists in palliative care as required.

There is wide variation in access to specialist palliative care across Scotland. HSCPs and 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. A named individual, team or service from the specialist palliative care should be easily accessible and provide timely support to the MDT and care home. They should foster close "co-working" and "shared learning" relationships with the care homes in their area.

Some care homes have found it extremely helpful to participate in Project ECHO. These multi-site videoconferencing meetings with an emphasis on shared learning and peer support have often focused on palliative and end of life care issues, with input from the local specialist palliative care team. Project ECHO is described in more detail within the data, digital and technology section of the framework.

Responding promptly to change

There may be times when an unexpected change occurs with an individual's symptoms or condition, and so prompt access to assessments, advice and support from the Primary Care and MDT is essential. Many areas of Scotland have a dedicated out of hours palliative care line, allowing direct and fast access to community nursing staff for people who are nearing the end of life. It is recommended that all HSCPs ensure that there are arrangements to allow prompt access to nursing and medical staff throughout the 24-hour period.

"Very difficult to get in touch with health care professionals."

People should also have timely access to appropriate medication, equipment such as pressure relieving mattresses and syringe pumps, and to community nursing (particularly where there are no registered nurses in the care home).

'Just in case medication', as recommended in the Scottish Palliative Care Guidelines should be available for everyone who is assessed to be in their last weeks of life. Further work needs to be undertaken to explore the legislative and contractual barriers to requisitioning and holding a stock supply of medicines in care homes in Scotland.

Families and friends

It is particularly important that families and friends are kept informed, involved and supported as their loved one is approaching the end of their life. Clear compassionate communication and unrestricted visiting are key to achieving this. Care home staff are best placed to lead in this area, as they have established relationships with the people that are close to the individual. However, the GP and other members of the MDT should be available to support the care home staff and speak with family and friends when required.

Dealing with loss

Those who work or live in care homes describe the strong bonds and connections that develop between staff and those living in the care home, and so the death of an individual can have a profound effect on everyone. Care home staff will often have to break the news that someone has died whilst they are still coming to terms with the information themselves.

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.