"I, and the people important to me, have opportunities to have honest, informed, and timely conversations and to know that I might die soon. I am asked what matters most to me. Those who care for me know that and work with me to do what’s possible."

What the citizens of Lancashire and South Cumbria say this means for them

"Being asked what matters to me as an individual is extremely important to me. Not everyone has the same needs and requirements so to have individual plans of care and conversations is good."

"Regardless of my diagnosis I need to know what to expect in the future and what will happen if I am unwell. I need people to communicate with me in a way that I understand, not using jargon."

"I will be listened to and respected, even if people caring for me don’t agree with my personal choices, and that I should be enabled, as far as possible, to live the remainder of my life the way I want to live it."

"Having a named person to turn to when I don’t understand, need more information, or have things I want to say. Keeping my information confidential and helping me to feel safe and welcome."

Lancashire and South Cumbria commitments towards making this happen

• We will take the time to listen and to find out what matters to you, including understanding your goals and preferences
• We will regularly review your care to ensure any changes to your care needs, or your preferences for how you'd like to be cared for are kept updated
• We will improve the early identification of those that are likely to be in the last year of life and those approaching their final days of life
• We will support people to feel more confident and prepared for having conversations around death and dying and planning for the future
• We will provide private space and timely opportunities for end-of-life care planning conversations, if people wish to have them
• We will value people as active partners in their care and decision making, so that they are supported to retain as much control as they wish to have
• We will provide accessible information so that people will know what palliative, end of life and bereavement care and support they can expect
• We will provide people with personal health budgets to allow them to personalise and coordinate their own palliative and end of life care
• We will ensure (with your consent), all health and social care professionals have the necessary information to be able to care for you effectively
• We will provide safe and efficient transportation to your preferred place of care where this is available and appropriate to your care needs
• We will work together across services to assess and respond to the care and support needs of a person and those important to them, including bereavement support

Enablers and responsibilities

Enabler

• Early identification tools are in use - e.g. EARLY tool, gold standards framework, SHADOW tool for care homes, amber care bundle, other digital tools that support early identification

• Public health approaches are being taken towards death, dying and bereavement - e.g. compassionate communities, dying matters

• There is dedicated private space and opportunity for sensitive conversations - e.g. dedicated consulting rooms, longer appointment times

• Personalised care and support planning is being proactively offered and regularly reviewed - e.g. concerns checklist, holistic needs assessment, advance care planning and understanding peoples wishes - for example preferred place of care, organ and tissue donation, DNACPR, escalation plans, anticipatory clinical management planning, future life planning, ICD deactivation, mental capacity assessment/best interests, processes in place for regular review

• Patient and public information on palliative and end of life care is accessible setting out what patients and carers can expect, available in different formats and languages, signposting across statutory and voluntary services and care homes

• Personal health budgets specifically to support end-of-life

• Electronic palliative care coordination systems (EPaCCS) includes platforms for patients to share or to view their own plans

• Palliative and end of life care pathways at place are integrated to meet individual needs - e.g. across health, social, third sector, through joint MDT’s, trusted assessment processes, integrated discharge summaries

• Pre and post bereavement support helping people to prepare for loss, grief, and bereavement - e.g. in care homes, across maternity, children’s and adult’s services, including sudden and traumatic death

• Patient and public engagement - gaining service user and carer feedback and involving them in service evaluation and design

• Equality and diversity strategy to deliver palliative and end of life care services and support that meet the needs of marginalised groups working within best practice when supporting individuals that may feel marginalised e.g. LGBTQ+, homeless people, prisoners, immigrants, travelling community

Commissioner Levers

• Underpinning guidance detailed on page 1^1-4

• National Specialist Level Palliative & End of Life Care Services Specification (Adults)⁵

• Enhanced Health in Care Homes Framework⁶

• NHS Continuing Health Care fast-track pathway¹⁸

• Universal Principles for Advance Care Planning⁷

• NHS Virtual ward guidance¹⁹

• NHS Chaplaincy guidance²⁰

• Clinical leadership and peer leadership throughout ICS, ICP and place-based partnerships

• Joint Strategic Needs Assessment The Well Pathway- Dementia Care ²²

Provider Levers

• Named clinical and board executive lead

• Organisational palliative and end of life care strategy

• Place based partnership groups

• Annual audits

• Incident reviews

• Job roles and responsibilities

• Data sharing agreements

• Education and training

• Clinical appointment scheduling

• Universal Principles of Advance Care Planning⁷

• Information Standard for End of Life Care⁸

• North West anticipatory clinical management planning guidance ⁹

• Local public information portals

• Single point of referral/care

• The Well Pathway- Dementia Care ²²

Measurements of success

• 0.6% of the practice population will be on a palliative care register
• 60% of people that die will have been on the palliative care register (include breakdown of cancer, non-cancer and dementia)
• 60% of people identified as palliative will have been given the opportunity to discuss a personalised care and support plan before they die
• % of people that die will have a CPR decision or discussion recorded
• Number of organisations having robust systems in place to share advance care/anticipatory care plans electronically
• % Achieving their preferred place of death
• Survey of service users and bereaved people (consider Place or ICS wide approach)

• National Audit for Care at the End of Life (NACEL)

• Patient case studies

• Audit of standards of advance care planning against northwest anticipatory clinical management planning guidance

NB: Baseline data should consider skewed data arising due to COVID-19.

Best practice examples

Outcomes: A pathway has been developed to share the document with GP, out of hours medical services, Pendleside Hospice and E.D. flags have been added to the individual organisations systems to alert to the existence of the 'what if' document. NWAS are aware of the document but cannot flag as their system flag an addresses.

Swan model end of life & bereavement care Fylde Coast

Scope of coverage: Patients in Blackpool Teaching Hospitals with life limiting illnesses, last days & their families, including bereavement and carer support.

Lead contact: Jackie Brunton, lead nurse EoL & bereavement care, Blackpool Teaching Hospitals.

Brief description: SWAN End of Life and Bereavement Care Team | Blackpool Teaching Hospitals NHS Foundation Trust (bfwh.nhs.uk)

The Swan model of care is about providing excellent, individualised end of life and bereavement care for every patient and every family, every time. It is patient and family focused and centres on meeting the unique needs of each individual and their loved ones.

The Swan model is instigated at the point of recognition of dying and is used to support care throughout end of life, into bereavement and beyond. Staff inform the family wherever possible of what the Swan model means and swan signage will be used throughout the Trust included on documentation, information, comfort packs, swan sign is placed on the door or curtain of the area in which the dying person is being cared for. It acts as a visual reminder for all staff to employ the principes of the Swan model in their care for that person and their loved ones, and reminds everyone, including other visitors, to be mindful of maintaining as peaceful an environment as possible.

The Swan is an enabling model which supports generalists to be specialists in end of life and bereavement care. It’s ethos is about empowering staff and giving them permission to care and to break the rules that don’t exist. We will maintain standards that we would expect for our own loved ones, find out to know what matters most and support making this happen.

Outcomes: Impact is monitored through bereaved experience in national and local audit.