Palliative care strategy: Palliative Care Matters for All

Outcome 4: Adults with serious or life-threatening illnesses will be identified earlier and be able to access general palliative care and specialist palliative care services whenever and wherever needed.

Identification of palliative care needs

We want all adults living with any serious or life-threatening illnesses to stay as well as possible and to receive the right care and support when their health changes, along with their families and carers.

Many adults will be living with one or more serious illnesses that mean their health fluctuates but gets worse over time. Changes in health can be due to serious illness complications or a new life-threatening illness. This means that what might happen and when is often uncertain and unpredictable. People in this situation can often benefit from palliative care for months or years before they are dying. A majority of these will be older people.

We know that focusing on how long a person might live and difficulties in trying to identify whether they have a 'terminal illness' means people miss out on being offered palliative care and are at risk of receiving health and care which is not of benefit or value to them. Recognising who needs palliative care is a challenging, but important, role for busy health and social care staff. Screening and clinical identification is followed by a review and person-centred assessment, based on what matters to the person and their family or carers.

There are tools to help health and social care staff, teams, organisations and service planners identify more people earlier for palliative care assessment and future care planning. For instance, the SPICT (Supportive and Palliative Care Indicators Tool) is used widely to identify adults in the community, care homes, hospitals, and now in prisons. SPICT has clinical and care indicators for each of the main illnesses associated with palliative care need and general indicators of increasing needs. These include unplanned hospital admissions, poorly managed symptoms and more care and support needs.

Population screening tools search primary health care records to help staff and teams identify and prioritise adults with frailty for clinical review and holistic needs assessment. The Electronic Frailty Index is in general use, and there are prototype electronic tools that can screen GP practice records to identify more people for palliative care assessment and future care planning.^[15]

When a person's physical wellbeing and functioning declines, and they need more personal care, that often prompts a review that can include identifying them as likely to benefit from palliative care. Widely used tools are the Australia Modified Karnofsky Performance Status tool^[16] and the Barthel Index.

Promoting consistent use of tools is important for all HSCPs and Health Boards to enable staff, people themselves, and others who know the person, to recognise changes over time.

Understanding the needs of palliative care service users

Primary care teams, GPs and community nurses have a central role in palliative care, including leading improvements in early identification and providing holistic care for people and families. A Key Information Summary (KIS) electronic care record is often used for care planning and coordination.

We know that what makes the most difference is the offer of a review and assessment of holistic needs from the primary care team; a social worker; social care staff at home or in a care home; or another trusted nurse, doctor or staff member. Staff education tools, like the Spectrum of Palliative Care poster, can enable more health and social care staff to offer people earlier general palliative care and/or involve a specialist service.

Some adults identified for palliative care will have multi-dimensional needs, including management or treatment of pain and other symptoms, mental health issues and family and carer support needs. Different health and social care professionals will be involved in holistic reviews and discussions with people depending on their circumstances, problems and place of care. When a person or situation is more complicated, advice or a further assessment may be needed from a palliative care specialist or another specialist or service.

Future care planning may begin with a palliative care review. A palliative care review and assessment is an opportunity for people to talk about their lives, what they hope for and any worries they may have. Treatment and care options and medicines can be reviewed to improve overall health and avoid unnecessary tests, treatments or side effects. This can also include discussion on any practical or social problems that they may need help with.

Palliative care reviews also include exploring people's values, beliefs, faith and cultural practices and preferences, alongside offering spiritual care in line with the Scottish Spiritual Care Framework.

Person-centred palliative care includes the people that are important to the person - particularly carers, family members and close friends. Carers of someone meeting the criteria for a 'terminal illness' in line with BASRiS are entitled to have their own support needs considered and addressed via an accelerated adult carer support plan or young carer statement, in line with the Carers (Scotland) Act.

Health and social care professionals and teams providing palliative care will use review processes and assessment tools suited to their work situation. A key tool for assessing the holistic palliative care needs of adults is the Integrated Patient Outcome Scale, and one that is widely used to guide support for carers of someone receiving palliative care is the Carer Support Needs Assessment Tool Intervention.

Delivery of adult palliative care

Palliative care is delivered in the community, through care at home; in a care home; or in a community hospital by multi-disciplinary teams of primary and secondary health care and social care staff. Many different staff may be involved, including GPs; nurses; community pharmacists; social workers; allied health professionals, including physiotherapists, occupational therapists, and dieticians; care at home staff; and care home staff. Unscheduled NHS services – NHS 24, primary care out-of-hours, Scottish Ambulance Service, and hospital emergency departments – provide essential urgent palliative care, along with emergency social work and rapid response social care services.

Palliative care in acute hospitals is important at many points in the illness journeys of people admitted with a wide range of serious illnesses and complications. Specialist inpatient and outpatient treatments continue to be important for people who are dying. Many medical, nursing, allied health professional, pharmacy, social work and spiritual care staff and teams provide palliative care as part of their other roles.

Palliative care is relevant for people with many long-term conditions, and should be better integrated with other treatments and introduced well before the final weeks of life. Specialist palliative care review can be prompted by poorly controlled symptoms despite optimal treatment of the underlying health conditions or other holistic needs.

Adult specialist palliative care

Adult specialist palliative care teams offer a wide range of services, including direct care in 14 independent hospices and 7 NHS palliative care units. They may also provide specialist outpatient clinics and day care services.

Specialist palliative care community services deliver expert care, and support primary care teams, social care staff and the many other staff caring for people and their families at home, in care homes and in other places of care, right across Scotland. A core team of specialist nurses is supported by palliative medicine consultants and other specialist medical staff, with access to other palliative care specialists and services where needed.

In hospitals, specialist palliative care services offer expert advice and patient and family assessments, for increasing numbers of people with diverse serious illnesses, or share care with hospital staff from other specialities and teams. Specialist medical and nursing staff enhance delivery of Realistic Medicine, contribute to shortening hospital stays, and help support timely discharge home. For example, people with incurable cancers receiving newer treatments have improved outcomes, but life can include temporary improvements or rapid declines, with persistent symptoms. Complex decision-making and wider concerns are often best addressed by palliative care integrated with cancer care from diagnosis.^[17]

In addition to specialist palliative medicine consultants; nurse specialists; and other specialist medical staff, specialist palliative care services may include pharmacy; social work; family support; occupational therapy; physiotherapy; lymphoedema services; psychology; hospice at home; telephone advice; spiritual care; and bereavement support. Our survey^[18] reported limited funding or allocated time for specialist nurses and many of these other staff. Independent hospice services and NHS specialist palliative services were working hard with other NHS and local authority services to try and address gaps.

Detailed research into patient and family needs and journeys showed that specialist palliative care being provided in the community, hospices and hospitals is complex, highly specialised and cost-effective.^[19]

We know some adults find it harder to access general and specialist palliative care services, or avoid engaging with them because of personal circumstances, family situation, faith or cultural beliefs and practices.^[20] This includes people with learning disabilities or mental illness, LGBTQI+ people and people from minority ethnic communities.

Emergency situations and urgent palliative care for adults

Many adults with serious or life-threatening illnesses, and their families and carers, require urgent palliative care because their health and care needs change, sometimes rapidly and unexpectedly. In 2022/23, over 59,000 people visited a hospital emergency department in the last six months of life, and 94% of all hospital admissions were for emergency care during that time.^[21]

We know that people depend on timely support from unscheduled healthcare services and rapid response social care. Being identified for palliative care already; having a future care plan; and knowing how to get the right help in a crisis make a big difference to how these services are used and whether they meet people's needs. Local telephone advice lines for people and families are available in some HSCPs and Health Boards, and those who have had access to a special helpline, in addition to NHS 24, rated these highly.^[22]

Most adult specialist palliative care services across Scotland offer designated professional advice lines to colleagues working in hospitals, the community, care homes and to the Scottish Ambulance Service. These advice lines are staffed by senior specialist palliative care medical and/or nursing staff. This optimises provision of palliative care by specialist teams working in partnership with other teams caring for people in all places of care and with all types of serious illnesses. It is important that this specialist advice is available at all times of the day and night, including at weekends.

Rural and Island communities have adopted innovative approaches to palliative care service delivery in response to their populations and geography. Ongoing challenges are addressed through a range of integrated and joint working with palliative care specialists, who might be based in other Health Boards, and with local health and social care staff working in the community and small hospitals.

Palliative care in NHS Shetland

NHS Shetland cares for a population of 23,000. Most people live in Lerwick, with the rest dispersed throughout rural areas of the mainland and the outer isles.

The Board's unique palliative care service is provided by primary care and community clinicians, social care, care homes and a small Rural General Hospital. The nine residential care homes provide beds for a small number of people needing palliative care, with support from primary care and community staff. Within the Board's nurse led oncology team there are two palliative care clinical nurse specialists, who provide support and input for patients and families with more complex needs. There is an excellent relationship with the Palliative Care Service based at Roxburghe House in NHS Grampian, which provides 24-hour specialist advice as required.

Details of people receiving palliative care are held and shared between out-of-hours primary care clinicians, with direct phone access provided via the hospital switchboard to reduce the burden and provide more support for people, their families and carers.

Though the Board's lack of specialist service may be seen as a disadvantage, working as a team, with support when required, allows general palliative care skills to be maintained and developed to a high standard to provide a bespoke service to the local population.

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:

4.1. Work with Healthcare Improvement Scotland (HIS) to improve guidance and promote improvements in use of evidence-based tools to support proactive identification and review of adults with unmet palliative care needs, their families and carers, by staff and teams working across health and social care in all HSCPs and Health Boards.

4.2. Work with NHS National Services Scotland (NSS), HIS and digital science experts to explore further development and implementation of national health records screening tools to improve identification of adults with serious or life-threatening illnesses for earlier palliative care and future care planning.

4.3. Explore viable options with NHS 24 and other delivery partners to provide a 24/7 national palliative care advice line (via the 111 system) for patients, families and carers that reduces delays in access to urgent primary care and social care and connects with locally delivered palliative care telephone helplines and services.

4.4. Support collaborative working to promote inclusion of palliative care and care around dying in service planning and delivery for people with one or more long term health conditions.

4.5. Support innovative models of care and consider options for service developments and partnership working to increase equity of access to adult specialist palliative care, both in-hours and out-of-hours, in all Health Boards and HSCPs, including a specific focus on people who have more barriers to accessing the specialist palliative care they need.

4.6. Explore options with Health Boards and HSCPs to make sure there is consistent access at all times (24/7) to specialist clinical care from a consultant in palliative medicine, and from senior nurse specialists, whenever a person is receiving inpatient hospital or community hospital specialist palliative care, including contractual arrangements to support rural and island Health Boards.

4.7. Work with Health Boards, HSCPs and third sector organisations to improve access to urgent palliative care services in the community that can reduce avoidable hospital admissions and shorten inpatient stays, and provide more effective, timely admission processes for those needing hospital care. This includes improving access to specialist palliative care advice in hospital and at home within wider national and local work on unscheduled care and early hospital discharge.

4.8. Work with Health Boards, HSCPs and third sector organisations to support improved provision of professional-to-professional specialist palliative care clinical advice lines, ensuring these are available 24/7 in all parts of Scotland, so that other health and care staff providing palliative care, including the Scottish Ambulance Service, can access specialist palliative care advice at all times.

4.9. Work with Health Boards, HSCPs, third sector organisations, and other delivery partners and community groups, to improve palliative care, care around dying and bereavement support for people from minority communities and other groups who face barriers to accessing palliative care or who need flexible approaches tailored to their health conditions, situation, personal circumstances, values and preferences.