Guidance on End of Life Care-Updated July 2014 INTRODUCTION Definition of End of Life Care: End of Life care helps all those with advanced, progressive, incurable illness to live as well as possible until they die. It enables the supportive and palliative care needs of both patient and family to be identified and met through the last phase of life and into bereavement. It includes management of pain and other symptoms and provision of psychological, social, spiritual and practical support National Council for Palliative Care Delivering excellent care for patients at the end of their lives: The provision of end of life care should co-exist within all disease pathways and is about understanding and delivering appropriate care at the appropriate time by the most appropriate person during the last estimated 6 12 months* of life. *Timeframe is given as guidance only and is not exhaustive. For some patients, e.g. those with motor neurone disease or dementia, end of life care may start earlier than the last estimated 6 12 months of life. With the patient s permission, all of those concerned with the patient s care and well-being should be kept informed of any decisions which impact upon the patient s care. All care requires an ongoing, continuing and effective dialogue between the patient, carers, partners and relatives. This is essential to inform general care planning, and is necessary to elicit any decisions the patient wishes to make in advance, and to check whether those decisions have changed. The differences between general care planning and decisions made in advance National End of Life Care Programme 2010 Priorities of care for dying patients: 1. The possibility that a person may die within the next few days or hours is recognised and communicated clearly, decisions made and actions taken in accordance with the person s needs and wishes, and these are regularly reviewed and decisions revised accordingly. 2. Sensitive communication takes place between staff and the person who is dying, and those identified as important to them.
3. The dying person, and those identified as important to them, are involved in decisions about treatment and care to the extent that the dying person wants. 4. The needs of families and others identified as important to the dying person are actively explored, respected and met as far as possible. 5. An individual plan of care, which includes food and drink, symptom control and psychological, social and spiritual support, is agreed, coordinated and delivered with compassion. One Chance To Get It Right, Priorities of care for the dying patient. The leadership alliance for the care of dying people, June 2014. Engagement with patients, families, carers and professionals. The leadership alliance for the care of dying people, March 2014. GUIDANCE What will we be using to help us to deliver the highest quality end of life care in Southern Health? Our aim is to develop a care plan for the care of people in the last days and hours of life. This will be accompanied by good practice guidance for healthcare professionals. These care plans will be patient-centred and travel with the patient should they travel between organisations for their care. Thus we are developing this care planning in collaboration with other organisations (for example hospices and acute trusts). The care planning process will be called 'Achieving Priorities of Care' We are developing pan-hampshire documentation in partnership with other organisations to assist care planning which will be piloted from September 2014. Your team may be one of the pilot sites. Achieving Priorities of Care These are the principles of end of life care that we expect all of our staff to follow: 1. Recognition of Dying Phase 2. Decision Making The possibility that a person may die within the next few days or hours is recognised and communicated clearly. Decisions are made and actions taken in accordance with the persons' wishes and needs. These are regularly reviewed and decisions revised accordingly. Sensitive communication takes place between staff and the person who is dying, and those identified as important to them. The dying person, and those identified as
3. Care Planning 4. Care after Death important to them, are involved in decisions about treatment and care to the extent that the dying person wants. An individual plan of care, which includes food and drink, symptom control and psychological, social and spiritual support, is agreed, coordinated and delivered with compassion. The needs of families and others identified as important to the dying person are actively explored, respected and met as far as possible. Consider tissue donation and discuss with family if appropriate Offering support and information to family / carers and addressing any specific religious, spiritual or cultural requirements 1. Recognition of Dying How can staff learn more about identifying life-limiting illness?.. Use the End of Life Care decision tool About 1% of the population die each year, yet it is difficult to predict or identify which patients may be in the last year or so of life. Of the 20 patient deaths on an average GP list only 5 will be due to cancer. The majority can be predicted. If predicted earlier, some supportive care measures could be introduced that would enable earlier discussion of the patient s wishes, improve care aligned to their preferences and fewer crises. In short, if we could identify these patients, we would be able to provide better care for them as they approach the end of their lives. Gold Standard Framework (GSF) goldstandardsframework home page 'It's about living well until you die'
GSF helps clinicians to identify patients in the last years of life, assess their needs, symptoms and preferences and plan care on that basis, enabling patients to live and die where they choose. GSF embodies an approach that centres on the needs of patients and their families and encourages inter-professional teams to work together. GSF can help coordinate better care provided by generalists across different settings 5 goals of GSF - To provide for patients with any final illness: 1. Consistent high quality care 2. Alignment with patients preferences 3. Pre-planning and anticipation of needs 4. Improved staff confidence and teamwork 5. More home based, less hospital based care The GSF prognostic indicators guidance, suggests which adult patients with any condition predicted to be in the final 6-12 months of life might be in need of supportive/palliative care. It was developed originally to support primary care teams using the Gold Standards Framework (GSF) and Quality Outcome Framework (QOF) to include more of the appropriate patients on their Palliative/Supportive Care Registers, and thereby to encourage better prediction of possible need and provision of care. End of life care decision tool The decision tool has been developed to replicate elements of the GSF in promoting a pro active and anticipatory approach to care. Here are key points about the tool: The focus is more on improving prediction of need for support, rather than pure prognostication of time remaining. It is for use in any care setting and has been designed to help health care professionals make a judgement on where a patient or client may be on life s journey. It has been designed to help health care professionals to make a clinical judgement on what level of care and specialist input may be required and at what time. \
2. Decision Making and Care Planning Out of a number of important comments and concerns raised In the Neuberger Report https://www.gov.uk/government/publications/review-of-liverpool-care-pathway-for-dying-patients it was recognised that as a nation we need to become more open about discussing death and dying. It is very important that healthcare professionals do not shy away from discussions with patients and relatives about this. If we can introduce these discussions, and thus prompt Advance Care Planning earlier in person s illness. Then we can improve all of our care. From provision of equipment to complex decision-making. The positive impact on the patient, carers and families is also likely to be significantly improved. Guided by the patient, particular attention should be focused on explanation,, discussion, documentation and communication of the following: Please ensure that you are familiar with guidance about Mental Capacity Advance Care Planning Lasting Power of Attorney (Health and Wellbeing) Advance Decisions to refuse treatment Attempted Cardiopulmonary Resuscitation Discussions / Decisions Preferred Place of Care discussions/ Decisions Writing/ documenting and communicating all of these.
Holistic Assessment Of Supportive and Palliative Care Needs For Adults Requiring End of Life Care Step 1 Step 2 Step 3 Step 4 Step 5 Step 6 Discussions as the end of life approaches Assessment care Planning and Review Discussions Co-ordination as the of end of life Care approaches Delivery of high Quality services in Different settings Care in the last Days Care after Death Open, honest communication Identifying triggers for discussion Agreed care plan and regular review of needs and preferences Assessing needs of carers Strategic co-ordination Co-ordinations of individual patient care Rapid response services High quality care provision in all settings Acute hospitals, Community, care homes, extra care housing, hospices, community hospitals, prisons, secure hospitals and hostels Ambulance services Identification of the dying phase Review of needs and preferences for place of death Support for both patient and carer Recognition of wishes regarding resuscitation and organ donation Recognition that end of life care does not stop at the point of death Timely verification and certification of death or referral to coroner Care and support of carer and family, including emotional and practical bereavement support Spiritual Care Services Support for Carers and Families Information for Patients and Carers
3. Symptom management We will add a link to the Palliative Care Handbook (Version 8 due for publication shortly)- with advice on Symptom Management Pharmacological and Non-Pharmacological Syringe Drivers NICE Guidance Spiritual, Psychological and Social Care Bereavement 4. Care After Death- Tissue/ Organ Donation Tissue donation can help thousands of people each year. Donated tissue such as skin, bones and eyes can save or dramatically improve the lives of many people suffering from illness or injury. Many are not aware that we can donate some tissues after death whatever our age. There is no age limit for donation of tissues Bone, skin and eyes. http://www.nhsbt.nhs.uk/tissuedonation/ or Call 0300 123 23 23 Bereavement links see EOLC home page