Palliative care strategy: Palliative Care Matters for All

Outcome 6: Quality and experiences of care around dying and bereavement support are improved for adults, their families and carers, in all places of care.

What happens when a person dies, and the care and support given, has a big impact on long term experiences of grief. It is important not to over-medicalise dying and to support families and carers through anticipatory grief, and with bereavement after someone has died.

Friends, neighbours, personal networks and local communities have a key role in supporting the person and their family and carers. It is essential that health and social care staff recognise this and work alongside them, and that planners also recognise the wider support available to people and factor this into whole system planning.^[25]

We have used the term 'care around dying' to describe all aspects of holistic care for a person who is dying and in the last hours, days and weeks of their life; care after their death; and support with loss and grief for families and carers throughout this time and when they are bereaved. We have not used the older term 'end of life' or 'end of life care,' as this can be confusing when it refers to variable and uncertain periods of time, given the unpredictable life expectancies and experiences of adults or children who have serious illnesses or health conditions.

Caring for people who are dying involves health and social care staff, teams and services in all places of care. The person who is dying may need to move between different places of care, and it is essential that whole-system approaches provide good co-ordination and communication to enable this to happen as quickly and safely as possible, and in the best interests of the person and their family and carers.

We know that the main priorities for someone who is dying are being comfortable and free from pain and other symptoms; with people important to them; maintaining dignity and self-respect; and being safe and well cared for.^[26] These are all more important than being at home. While most people say that they would prefer to die at home because this is where they feel most comfortable, people often change their mind due to worsening physical or mental health problems, increasing care needs, or home circumstances. Even when there is a previous plan or wish to be at home, some situations may mean the best option is admission to a hospital, hospice or specialist palliative care unit, or a care home.

The burdens of caring or not having a carer are important too. Carers talked about the demands and challenges of caring, but some gave examples of being resilient and feeling fulfilled in their role. Dignity and respect for a person's views, wishes, beliefs, faith or religious practices and their culture are all part of person-centred care around dying.

How those close to the person who is dying experience events around the time of death has a big impact on their grief. People who are bereaved need to be well supported before and around the time of dying and feel confident that the person who died was comfortable and received good and compassionate care. Good care of a person who is dying begins with a process of recognising that death is approaching, while acknowledging that there is still uncertainty, and everyone is different.

The language someone uses when talking with people who are dying, and their families and carers, makes a big difference. It is important to explain in clear and simple terms what is happening with the person's health and to say why they are likely to die soon. It is also important to discuss what often happens when someone is dying and what those around them can do to help care for them. People with different types of illness need care that is tailored to their needs, and decisions about care need to be shared and to include plans for stopping tests, treatments and medicines that will not work or help the person.

Dying at home

Improving the quality of care and offering enough support at home for people who are dying remains a priority and involves a network of people around the person, starting with their families, carers and friends, and extending into local communities. These people provide vital support, alongside social care staff, primary care teams, community pharmacists, allied health professionals, and social workers, supported by palliative care specialists as needed. NHS 24, the Scottish Ambulance Service, primary care out-of-hours, and emergency social work and social care staff all provide essential urgent palliative care by telephone or through direct care.

Knowing who to contact and having a palliative care helpline number helps families and carers feel more confident and secure when someone is dying at home. A key professional to coordinate care also makes a big difference, and this has often been the district nurse.

Scottish Ambulance Service (SAS) Macmillan Palliative Care Programme

This mandatory training programme for all ambulance clinicians equips them to de-escalate crisis situations at home by providing person-centred communication, urgent palliative care assessment and symptom management.

It links to the NES Framework Enriching and Improving Experience (NES 2018) and includes self-directed learning and bespoke training in palliative care and clinical communication. New guidance and medicines management systems allows SAS crews to carry and give injectable medicines for urgent symptom management. More people stay at home and experience high quality urgent palliative care, while reducing avoidable and costly transfers to hospital.

Planning for care around dying is an important aspect of well-coordinated care at home. This includes making sure there is a care plan that is regularly reviewed and shared within teams and across services.

Providing care equipment at the right time can be challenging, and people may be reluctant to accept it in advance. Reliable processes to assess changing personal care needs and deliver equipment quickly are essential for care around dying at home. Primary Care Teams and community pharmacists work together to provide support and a supply of 'just in case' medicines for pain and symptom management, or these may be given when someone goes home from hospital. Patients and families with experiences of these medicines spoke of needing clearer information and explanations about what they mean and how they are to be used.

Hospice at home

There is a growing number of rapid response palliative care outreach services available for people who are dying at home. Hospice at home is one such model of care, where staff with palliative care training can visit several times a day and/or stay in the home overnight to provide additional, short-term personal and nursing support to supplement other health and social care. These services are not available in all Health Boards and HSCPs, and often rely on third sector organisations sharing the costs and service management.

Marie Curie Hospice Care at Home

These services operate in many parts of Scotland through partnership arrangements with HSCPs. Expert Marie Curie staff work with district nurses, primary care and local palliative care services to provide planned and urgent support for people at home, tailored to their individual needs and preferences, with a focus on care around dying.

Jim* was referred to Marie Curie Hospice Care by his district nurse to support him to stay at home with Mary*, his wife. Jim's condition was changing quickly, and over the next 10 days he became unable to get out of bed and needed regular medicines for symptom management. It was clear he would die soon. Arrangements were made for Marie Curie Hospice Care staff to be with him in the house overnight that weekend and for several more nights. The Marie Curie staff provided care, comfort, encouragement and advice for the family, and contacted the local specialist palliative care team for additional advice when needed to manage Jim's symptoms overnight.

Mary said afterwards that she would not have coped without the Hospice Care service. Having their support allowed her to be Jim's wife in the last few days of his life and keep him at home, as they both wished. This helped Mary to cope with Jim's death at the time and helps her still. Hospice Care at Home is about all members of the different teams working as one and being around the dying person and their family, day and night.

*Not their real names

Dying in a care home

Care home residents are increasingly frail; many have dementia; and most will be cared for in their care home when they are dying, as highlighted in our My Health, My Care, My Home – Healthcare Framework for Adults Living in Care Homes. Experienced care home staff provide personalised palliative care for residents, with support from a wider multi-disciplinary community team and access to palliative care advice from primary care out-of-hours teams.

It is important for a resident who is dying to be given any palliative care medicines they may need without delay. This requires planning ahead, having the right medicines available, training and support for care home staff and information for residents and families.

Dying in hospital

Hospitals will continue to be a place where people die and there is a need to ensure that there is quality of care around dying, and for this to be monitored as a key service outcome in every hospital. Improved palliative care in the community, future care planning and timely urgent palliative care can reduce the need for hospital attendances, but people admitted for treatment of serious or life-threatening illnesses may die during that admission or be in a

specialist unit when their health deteriorates, and it becomes clear they are dying.

While ward staff and teams provide most of the care to people who are dying, hospital palliative care teams should be available to offer specialist palliative care assessments and advice.

Dying in a hospice or specialist palliative care unit

Referral to a hospice or specialist palliative care unit for care around dying may become necessary when the complexities of the person's pain and symptoms, mental health problems, family situation or personal or home circumstances need the full expertise of a specialist, multi-disciplinary team. Independent hospices and NHS specialist palliative care units are centres of excellence in supporting care around death, as well as many other aspects of specialist palliative care across the health and care system.

Care after someone has died and bereavement support

Bereavement care is the support people need when dealing with grief before and after someone has died. This includes emotional, psychological, practical and financial support. Everyone who experiences a bereavement will have some level of need, which will vary from one person to another, such as the need for acknowledgement and compassion.

Public education about grief helps everyone to understand and support each other better through this time. Some people will need additional support beyond their own networks, and it is important to provide information and signposting for this. Some people will also need additional support, such as counselling, or more intensive or specialist therapeutic support. This is described as a Pyramid Model of Grief and Bereavement Support by Bereavement Network Europe.

Bereavement care encompasses the support that people of all ages need from their families, friends, places of work or education and communities, as well as from health and social care staff and specialist support and services.

Bereavement will affect everyone at some stage in their life. It has been estimated that around 328,000 people in Scotland are bereaved each year. Bereavement disproportionately affects older people, but children experience care and bereavement more than we might expect. Most children have experienced a bereavement by the age of 8.

People who care for a friend or family member may experience anticipatory grief, which can have effects on their quality of life; their ability to care; and have a long-term impact on mental health. Good bereavement support can have a protective effect on long-term impacts for children, as well as mental health and wellbeing for all, and impacts on work and the economy. This should therefore be offered proactively, as part of palliative care. There are specialist bereavement support services for children and young people, including those delivered by Children's Hospices Across Scotland (CHAS), adult hospices and NHS paediatric palliative care services.

In 2022 the UK Bereavement Commission reported that:

"Facing a bereavement can be one of the most profound upheavals any one of us experiences. The evidence submitted to the Commission indicated that the impacts of grief are both intense and wide ranging, touching all areas of life. The emotional impacts of grief vary and are changeable over time, often lasting for many months or years in different forms. While most people are able to continue with their existing responsibilities after some time, for some people intense emotional pain does not go away. Grief has physiological impacts, practical impacts on work, school and home life and also people's longer term economic wellbeing." ^[27]

Bereavement services are offered through skilled staff working in the NHS, hospices, the care sector, third sector organisations and faith communities. However, it is important that signposting and co-ordination make sure there is equitable access and capacity. Health Boards and HSCPs have a key role to provide information on local support.

It is also important that workplaces and education settings support staff, children and students through times of bereavement. Resources to support this include the Bereavement Charter for Children and Adults in Scotland and Good Life, Good Death, Good Grief.

Staff involved in palliative care, who are not part of a formal bereavement support or spiritual care service, will be supporting people as part of their everyday role. This includes respecting personal, family, cultural or faith practices. NES' Support Around Death provides education and resources for staff across health and social care who need skills and support in dealing with care around dying as a key part of their work.

Staff may, themselves, also need additional support when regularly providing care around dying, as well as when care has been particularly challenging for an individual or the whole team, or when staff experience personal losses or bereavements.

In addition to bereavement support from staff providing palliative care and wider networks of support, everyone who is bereaved should receive information about what to do when someone has died in Scotland through a leaflet called: When someone has died – information for you. This includes legal, practical and financial information and wider bereavement support.

People who are bereaved may also need practical financial support, such as the Social Security Scotland Funeral Support Payment, which people on a low income can apply for to contribute towards funeral costs. Awareness periods, such as National Grief Awareness week and Baby Loss Awareness week, are a key opportunity for Social Security Scotland to highlight both the Funeral Support Payment and alternative bereavement support that may be available to clients, through social media, newsletters and website activity.

Work is continuing to ensure that Scottish Government webpages in relation to Funeral Poverty and the Funeral Support Payment signpost clients to other forms of bereavement support available.

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:

6.1. Oversee an update to the national guidance on Care around Death, and work with Health Boards and HSCPs to make sure it is implemented as best practice in all places of care in Scotland.

6.2. Work with Health Boards, HSCPs, primary care teams and pharmacy services to promote timely provision and use of 'just in case medicines' for adults dying at home and residents in care homes, and improve staff education and public information.

6.3. Work with HSCPs and Health Boards to promote and develop effective models of urgent palliative care, able to provide rapid access to coordinated health and social care support for adults dying at home, their families and carers.

6.4. Work with SAS and NES to ensure palliative care continues to be part of core training and professional development for ambulance clinicians.

6.5. Oversee an update to the public information leaflet "When someone has died – information for you" with NES and other partners, and promote its use, along with additional local information through Health Board Bereavement Leads, HSCPs and other organisations, including NHS Inform.

6.6. Continue to champion, co-ordinate and work in partnership with key stakeholders to ensure compassionate advice, resources and support are available for people experiencing bereavement, following the death of an adult with serious or life-threatening illnesses, or with a child who has a serious health condition, and explore improvements to bereavement care.

6.7. Work with NES and other partners to develop a new education and training resource on bereavement care for staff across health and social care, that includes staff support and spiritual care as part of the Support Around Death resources.