Death, Dying and Older People Death, dying and bereavement is a major part of the life experience of older people in Scotland:

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1 Welcome to a special Improvement Network Bulletin edition focussing on palliative and end of life care. We would welcome your feedback on the Bulletins and suggestions for future topics contact us Please forward this Bulletin to all appropriate people in whatever agency and role they work across the partnership. Send as attachment Death, Dying and Older People Death, dying and bereavement is a major part of the life experience of older people in Scotland: 54,000 people died in Scotland last year, and 80% of these people were over the age of 65. Around 224,000 people are bereaved in Scotland each year, and this is something that disproportionately affects older people. Of the 54,000 people who died last year, 70% had palliative care needs. Palliative and end of life care is therefore critical to delivering the key aims of Reshaping Care for Older People. Palliative care not just for dying people Palliative care is a holistic approach to meeting the physical, practical, functional, social, emotional and spiritual needs of patients and carers facing progressive illness and bereavement. A palliative care approach should be used as appropriate alongside active disease management from an early stage in the disease process. Palliative care also encompasses a health promoting element concerning encouraging openness about death, dying and bereavement in society so that people are aware of ways to live and support each other with death, dying and bereavement in all its forms. How can improving palliative care help meet the specific outcomes set out within Reshaping Care for Older People? Good palliative care, including anticipatory care planning and a willingness by staff, patients and carers to be open about issues relating to death, dying and bereavement, is key to increasing the proportion of older people who are able to die at home or in their preferred place of care, and a corresponding reduction in the need for emergency admission to hospital. jitscotland.org.uk 1

2 Practical examples: The Joint Improvement Team (JiT) has produced a WebEx which explains why palliative and end of life care is central to delivering the aims of RCOP and presents relevant practical case studies: o North East Glasgow palliative care fast-track discharge service o Falkirk evening admission prevention service o Grampian Care Home project o Highland rural services o Care at home in South Lanarkshire The JiT website presents various case studies, including many that are particularly relevant to palliative and end of life care, for instance: o Nairn Anticipatory Care Planning and Integration o Delivering Better Outcomes Midlothian The Scottish Partnership for Palliative Care website highlights some practical examples, including: o A volunteer training programme about advance care planning o Audit of Palliative Care Summary (epcs) in NHS Forth Valley o What are the barriers to dying at home in Ayrshire? o Providing an effective palliative care service from community pharmacies Resources to support good palliative and end of life care: Liverpool Care Pathway for the dying patient and some evidence relating to its use. Anticipatory Care Planning: o Information for members of the public o Scottish Government FAQs on anticipatory care planning The Supportive and Palliative Care Action Register (SPAR) The electronic palliative care summary (epcs), soon to be subsumed within the Key Information Summary (KIS) currently being rolled out across Scotland. The Good Life, Good Death, Good Grief initiative has a website providing links to further information, resources and support for professionals, carers and anyone directly affected by death, dying and bereavement. The Supportive and Palliative Care Indicators Tool (SPICT) The NHS Lothian palliative care guidelines are widely used across Scotland, and updated national Scottish guidelines are currently being developed. Information about Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) policy for adults: o for staff o for members of the public jitscotland.org.uk 2

3 Education and Information The NHS Education Scotland Palliative Care in Practice website aims to support health and care workers to develop their knowledge and understanding in the principles of palliative and end of life care and advance care planning. End of life care for all (e-elca) was developed in England but is available to NHSScotland staff, and aims to enhance the training and education of health and social care staff involved in delivering end of life care. The Scottish Partnership for Palliative Care produces a monthly e-bulletin providing up-todate information about policy, practice, education, research and news relating to palliative care in Scotland. The Scottish Grief and Bereavement Hub provides resources and networking for improving the quality of bereavement care throughout NHSScotland and in partner agencies. Measurement and Impact NHS Healthcare Improvement Scotland (HIS) recently published a set of Palliative Care Indicators. The JiT Webex on palliative and end of life care explores evidencing impact. Available data and evidence The Marie Curie Cancer Care End of Life Care Atlas is designed to provide insights into care provision in local areas. The Nuffield Trust are running several projects looking at patterns of care at the end of life. Policy Context Living and Dying Well, a national action plan for palliative and end of life care in Scotland Living and Dying Well, building on progress Good Life, Good Death, Good Grief is an alliance of individuals and organisations who believe that Scotland should be a place where people can be open about death, dying and bereavement. The Good Life, Good Death, Good Grief website explains the rationale for health promoting palliative care the need for more openness about death, dying and bereavement. jitscotland.org.uk 3

4 Palliative Care in Care Homes: Relevant resources on palliative care for those working in Care Homes have been signposted on the Pearl Trees website. Making Good Care Better, national practice statements for general palliative care in adult care homes in Scotland. Care News the quarterly news bulletin of the Care Inspectorate. The following resources were published by the English National End of Life Care Programme, and provide some information and background: o Supporting people to live and die well: A framework for social care at the end of life o The route to success in end of life care achieving quality for social work o End of Life Care in extra care housing - a practical toolkit for managers and care and support workers in extra care housing schemes illustrating how extra care housing staff can talk about end of life care with residents and work to ensure their wishes and preferences are met. The Association of Palliative Care Social Workers (APCSW) website outlines the role of a palliative care social worker. Resources for the Public: The NHS Inform Palliative Care Zone provides practical information for people nearing the end of life and for their families. Good Life, Good Death, Good Grief provides links to support organisations and materials for individuals, carers and families directly affected by death, dying and bereavement. Final Fling aims to provide a one stop shop for end of life care needs, including services such as making a will and planning a funeral. Solicitors for Older People in Scotland (SOPS) is a group of Scottish Law firms dedicated to providing legal services to older people in a caring and sensitive way. Events Scottish Partnership for Palliative Care Annual Conference: Palliative Care in Many Guises, 31 October 2013, Royal College of Physicians, Edinburgh. jitscotland.org.uk 4

5 Appendix 1 RESHAPING CARE PATHWAY Areas where palliative care influences RCOP outcomes are highlighted in red. Preventative and Anticipatory Care Proactive Care and Support at Home Effective Care at Times of Transition Hospital and Care Home(s) Build social networks and opportunities for participation. Early diagnosis of dementia. Prevention of Falls and Fractures. Information & Support for Self Management & self directed support. Prediction of risk of recurrent admissions. Anticipatory Care Planning. Suitable, and varied, housing and housing support. Responsive flexible, self-directed home care. Integrated Case/Care Management. Carer Support. Rapid access to equipment. Timely adaptations, including housing adaptations. Reablement & Rehabilitation. Specialist clinical advice for community teams. NHS24, SAS and Out of Hours access ACPs. Range of Intermediate Care alternatives to emergency admission. Responsive and flexible palliative care. Medicines Management. Access to range of housing options. Urgent triage to identify frail older people. Early assessment and rehab in the appropriate specialist unit. Prevention and treatment of delirium. Effective and timely discharge home or transfer to intermediate care. Medicine reconciliation and reviews. Specialist clinical support for care homes. Support for carers. Telehealthcare. Support for carers. Carers as equal Partners. jitscotland.org.uk 5