Palliative and End-of-Life Care by Integration Authorities: advice note

Palliative Care Services

Palliative care is provided through a mix of inter-dependant specialist and non-specialist services.

Specialist Palliative Care

Specialist Palliative Care Services provide care directly, support others in provision of PEOLC clinically through advisory roles, and provide out of hours support across all settings in health and social care. Such services are often well integrated into their local communities and provide leadership related to PEOLC. The majority of specialist palliative care services also provide a broad range of education and training to support local populations and professionals in provision of palliative care. Such services provide an accessible resource that can be drawn upon when care needs require more than standard approaches.

Specialist palliative care services often include an in-patient unit which in many settings will be the local hospice, but will have a wide range of services including – out patient reviews, day care, community support services and hospital care services.

It is important that specialist palliative care services are involved in the strategic commissioning process for PEOLC, in order to influence and inform commissioning decisions.

Hospices and Specialist In-Patient Units

Many Partnership areas will have specialist services and these will often be hospices. Such specialist services have been used as hubs from which other services can be supported. Some specialist services do not have this model, and they provide in-patient care from within designated areas of a hospital, whilst others operate with a day care or community model.

Hospices have historically led the development and provision of palliative care. Their specialist expertise has often supported non-specialist services at the end of life, .

They may have also provided

• Direct care in all settings
• Support for care through advice, discussion and advisory reviews in all settings
• Out of Hours support
• Education and training across all settings and professional groups
• Leadership

Hospices also typically are able to attract high numbers of volunteers, and generate significant levels of charitable income from their communities.

As stated above, involving palliative care specialists in the strategic commissioning process for PEOLC will be important. This relationship is reciprocal, as the same process will inform what is required from hospices, including in-patient hospice and community based care, which hospices have been moving increasingly to support and provide.

One example of the wider contribution hospices can make, from Strathcarron Hospice

Strathcarron Hospice@Home

Susan was already known to the Strathcarron Community Clinical Nurse Specialist, so her symptom control was being assessed regularly. She was referred to Hospice@Home for carer support and personal care. She had refused personal carers, and her husband was not coping. The Hospice@Home nurse had significant conversations with Susan and discussed her personal wishes regarding resuscitation, and her concern that her husband Tom wasn’t coping. We helped with her last wishes and also helped her plan her funeral - it was reassuring to her husband that, although the funeral was very simple, it was exactly as she wished.

We helped her husband understand what to expect at the end, and why Susan no longer wanted to eat or drink. We provided pre-bereavement counselling for Tom and complementary therapies for both of them, which they found helpful. We showed Tom how to provide personal care for Susan, and helped with some practical care for him after her death.

Hospitals

Hospitals typically serve the communities they are set in. PEOLC is one of the key components of hospital care. It is known that on given day in Scotland:

• Around 30% of people admitted to hospital are likely to be in the last year of life,
• 90% of these emergency admissions lead to return to community setting,
• 10% will die in the hospital setting; and
• Overall the majority of deaths occur in the hospital setting in Scotland.

For many of those admitted the hospital admission may be the time when they are diagnosed with the illness that will lead to their death, or when the progression of existing conditions is identified and discussed.

Arrangements for transitions of care between hospital, home, hospice, community hospital and care home should be established so that they are robust, clear and purposeful.

Hospital and Community Based Collaboration and Coordination of Care.

A young woman with long term disabilities and lung disease admitted to hospital with pneumonia. Her breathing was so poor support in a medical high dependency unit was required. She had recovered from such episodes before. On this occasion, it became clear that recovery seemed unlikely, and the medical team spoke with her and her parents about end of life care. She had expressed clearly that she wished to be at home and not in hospital should she be dying. She needed a level of oxygen support that meant that moving out of a high dependency environment would not be possible without sudden decline. In conjunction with the hospital palliative care service, and in discussion with the young woman and her family, medications were used to ease the sense of discomfort from breathlessness. Over a day this allowed for a tapering off of the ventilator support. In parallel the team and her family spoke with her community team, and plans were made for her transfer home, understanding that during the journey itself there was a high risk of death occurring. She and her family knew and trusted her community team. Appropriate medications were provided and prescriptions completed in advance of discharge on the 24 ^th of December. Her community nurse stayed with her and the family at home - and she was able to be at home for a short time prior to her death.

Non-specialist Care

Most palliative care is provided by non-specialists, in non specialist settings, and will usually not be identified as ‘palliative’. The focus on community provision – in which social care and care provided by families and carers are the major contributors - will be ever more significant. The coordination of care across settings and services is central to the strategic framework for action on palliative and end of life care. Partnerships will be aware of the variety of local support which work together to provide the required care. The relevant community services and supports will include:

• Care homes
• Care at home
• Community nursing services
• GPs.

Public Health Approaches to Palliative Care

An overarching population health and wellbeing approach that encompasses more than health and social care services is helpful, and it should harness the capacities and capabilities of families, friends and local communities. Good Life Good Death Good Grief has been funded by the Scottish Government to provide a hub supporting the development of practice in this area. ^{[16] [17]} Informal and unpaid carers provide the greatest share of support to people at the end of life, and support for these carers will be affected by forthcoming regulations under the Carers Act and these will set timescales for the preparation of a young carer statement or adult carer support plan where a person being cared-for is considered to be terminally ill. Volunteers also play a significant role and support for them should also be taken into account.

One example of this overarching population approach is provided by Compassionate Inverclyde.

Compassionate Inverclyde

Inverclyde HSCP

Compassionate Inverclyde is an innovative, multi-agency, community-wide initiative which aims to build a compassionate community in Inverclyde by encouraging an ethos that end-of-life is the responsibility of the whole community and not just one part of it (such as the NHS).

A number of agencies are signed up to Compassionate Inverclyde, including:

• Inverclyde HSCP

• Inverclyde Council

• carers

• third sector organisations

• Police Scotland

• the independent care sector

• community representatives

• faith organisations and others.

The programme is led by Ardgowan Hospice. There are many strands to the initiative, including No One Dies Alone ( NODA which is in the process of development and will focus heavily on deploying and training volunteers to develop community led responses to palliative care). It is envisaged that Compassionate Inverclyde will contribute to the Acute Service Review. A successful launch of the initiative was held at the Beacon Arts Centre in March 2017 which was opened by the Scottish Governments’ Communities Minister, Aileen Campbell.

To date the initiative has been unfunded and has developed through the voluntary efforts and in-kind contributions of the partner agencies, but represents another example of working together for better outcomes.

Support for Developing Commissioning Plans for Palliative and End of Life Care

The Scottish Partnership for Palliative Care (SPPC) ^[1] plays a particular role running network functions which connect health and social care professionals from hospitals, social care services, primary care, hospices and other charities, to find and share ways of improving people’s experiences of declining health, death, dying and bereavement. SPPC is significantly funded by the Scottish Government and its membership to fulfil this role, and its activities aim to offer to support PEOLC in all settings, across statutory, voluntary and independent sectors.

Partnerships should also consider other national resources which provide guidance regarding high quality, safe and effective PEOLC.

These resources include:

• Health and Social Care Standards ^[18]
• Scottish Palliative Care Guidelines ^[19]
• SIGN Guidelines, which include guidance on palliative care for specific conditions such as heart failure ^[20]
• NICE Guidance on end of life care ^[21] and End of life care for infants, children and young people ^[22] amongst others
• A Road Less Lonely - Moving forward with public health approaches to death, dying and bereavement in Scotland (2018) ^[23]
• The The NES and SSSC - Education and Development framework and an introductory learning resource ^[24]
• Resources developed as part of the Learning Disabilities and Palliative Care Project ^[25]

Healthcare Improvement Scotland, and in particular the iHUB and the ‘Living Well in Communities’ ^[26] work stream, focuses on key areas of health and social care that can prevent unnecessary admission to hospital and enable people to remain at home or in a homely setting, with support from their family and the community.