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Palliative and end of life care statutory: guidance for Integrated Care Boards (ICBs)
- Author:
- NHS ENGLAND
- Publisher:
- NHS England
- Publication year:
- 2022
- Pagination:
- 15
- Place of publication:
- London
This guidance has been developed by NHS England to support Integrated Care Boards (ICBs) with their duty to commission palliative care services. Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening or life-limiting illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. ICSs have a key role to play in ensuring that people with palliative and end of life care needs can access and receive high quality personalised care and support. The guidance is statutory and ICBs must have regard to it. It also contains links to resources and good practice for ICSs when planning locally and working collaboratively with local partners. (Edited publisher abstract)
On the brink: the future of end of life care
Highlights a range of widespread failures in care for dying people, revealing that some people at the end of life are unable to get access to social care for help with everyday tasks such as washing and changing clothes, and many families are being left without professional advice on how to care for their dying relative. The report also includes distressing examples such as badly coordinated nursing and care services leading to mix ups with pain medication, and a family members struggling to arrange a home visit from a nurse for their dying mother. The report says that a lack of support for people at home is putting extra pressure on an already overstretched NHS, with people dying in hospital spending an average of 13 days there. The report argues that shifting care out of hospitals will be better for people at the end of life and more cost effective, but warns that the right support needs to be in place at home and in other settings to enable this to happen. (Edited publisher abstract)
Community based participatory research for the development of a compassionate community: the case of Getxo Zurekin
- Authors:
- HASSON Naomi, et al
- Journal article citation:
- International Journal of Integrated Care, 22(1), 2022, p.2. Online only
- Publisher:
- International Foundation for Integrated Care
Introduction: In the face of a growing ageing population and rising care needs, compassionate communities seek to visualize the community as an equal partner in the complex task of providing quality social and health care at the end of life. Description: Getxo Zurekin is a social innovation example for the creation of a compassionate community in Getxo, one of the most populated cities in the province of Biscay, with 25.46% of its population aged over 65. Mixed methodologies have been applied, active listening and co-creation of actions and strategies towards improving care and quality of life for people and families facing advanced disease and end of life situations, with more than 80 people interviewed to conform the basis for a collective sense making. The initiative has reached more than 1,000 people in Getxo. Discussion: Following a systemic approach, horizontal relationships and cross-sectoral collaborations have allowed engaging the active involvement of local agents in the collective sense making and co- creation process. Conclusion: Getxo Zurekin represents an example of a participatory action research model, which has shown to be effective to meet initial targets towards creation of a compassionate community. (Edited publisher abstract)
Ambitions for palliative and end of life care: a national framework for local action 2021-2026
- Author:
- NATIONAL PALLIATIVE AND END OF LIFE CARE PARTNERSHIP
- Publisher:
- National Palliative and End of Life Care Partnership
- Publication year:
- 2021
- Pagination:
- 50
- Place of publication:
- London
- Edition:
- 2nd.
This national framework, co-produced by a partnership of 27 national organisations, sets out an overarching vision and six ambitions for how care for those nearing death should be delivered at local level. The framework can be used to benchmark services, develop local strategies and plans, support business cases and help shape learning and development offers. Key elements of the vision include: personalised care planning; shared records; evidence and information; involving, supporting and caring for those important to the dying person; education and training; 24/7 access; co-design; and leadership. The six ambitions are: each person is seen as an individual; each person gets fair access to care; maximising comfort and wellbeing; care is coordinated; all staff are prepared to care; and each community is prepared to help. Each ambition includes a statement to describe the ambition in practice, primarily from the point of view of a person nearing the end of life. While focusing on the experience of the dying person, each statement should also be read as an ambition for carers, families, those important to the dying person, and where appropriate for people who have been bereaved. (Edited publisher abstract)
Case study method to design and evaluate person-centred integrated palliative and end-of-life care
- Authors:
- CRUZ Giovanna I., MCGHEE Sarah M.
- Journal article citation:
- Journal of Integrated Care, 29(3), 2021, pp.231-241.
- Publisher:
- Emerald
Purpose: This case study aims to understand the experience of care from a patient/carer perspective and to describe how the method can be replicated to address gaps in evidence relating to integrated person-centred care. Design/methodology/approach: The case study was constructed using data extracted from personal diaries and medical records kept by a person with a complex condition, correspondence with family from the last 18 months of life and interviews with the carer and long-term conditions coordinator. The number of professionals or teams involved in providing care from statutory services, the third sector, and private providers were counted to understand the ecosystem of care. The number of contacts was plotted by provider and purpose of care. The type of care and hours of respite were estimated. A protocol was developed to assess the feasibility of replicating the data and analyses used. Findings: There were 35 care providers from the public, private and the third sector, demonstrating that only the patient or carer can identify the ecosystem of care. The majority of care was for respite and on average, the carer provided four hours of care per every respite care hour. The method was replicated successfully. Research: limitations/implications: The case study formed the basis of a workshop that brought together health care professionals from the public services and the third sector. The discussion led to the identification of gaps and areas where greater coordination between providers would benefit patients. Originality/value: The case study method combines contemporaneous patient and carer sources of data and health service activity to create a detailed account of care at the end of life. The approach addresses gaps in person-centred evidence for the development and evaluation of integrated palliative and end-of-life care (Edited publisher abstract)
The state of end of life care: building back better after Covid-19
- Author:
- THOMAS Chris
- Publisher:
- Institute for Public Policy Research
- Publication year:
- 2021
- Pagination:
- 38
- Place of publication:
- London
This report explores how to build back better end of life care after Covid-19. This should be based on delivering a managed shift to community-led end of life care. This would not be one size all – rather, it would be about a model led by the community, and through which people receive the specialist and non-specialist services that are right for them. The report identifies three disruptive trends in the 2020s: the pandemic’s aftershock – the ‘end of life care backlog’; more deaths in 2031 than in 2020 – total mortality will rise faster than the population grows over the coming decades; an ageing population means more complicated health needs. Key findings on resource allocation and healthcare utilisation, undertaken by Imperial College London, five areas where to focus efforts to accelerate managed delivery of high quality, community-led care in the decade to come: end of life care remains tied to hospitals; resilience on hospital care is higher in the North East, Yorkshire and the Humber, West Midlands and London; there is evidence of healthcare inequalities in healthcare and resource use; people do not feel confident in the whole workforce; and quality and access to care. The report makes a series of recommendations supporting a new framework for the shift to community-led end of life care in England, based on four elements: providing everyone; the right care; from the right person; at the right time. (Edited publisher abstract)
At the crossroads: how can the NHS Long Term Plan improve end of life care in England?
- Author:
- MACMILLAN CANCER SUPPORT
- Publisher:
- Macmillan Cancer Support
- Publication year:
- 2019
- Pagination:
- 48
- Place of publication:
- London
This report looks at how the implementation the Long Term Plan can lead to better end of life care in England. It is based around seven commitments in the new NHS Long Term Plan which have been identified as having the most relevance to end of life care. For each commitment, the report looks at what needs to happen in health and care to ensure services can be successful in delivering improvements to end of life care. The seven priorities cover: prioritising end of life care in all parts of the health and care system; personalising care through shared decision making and advance care planning; shared patient records; integrating care in the community; training professionals to support palliative and end of life care patients; whole system approaches; and quality improvement in social care. The report is based on insight gathered from health care professionals delivering end of life care in what remains a fragmented system. (Edited publisher abstract)
A different ending: addressing inequalities in end of life care: people with conditions other than cancer
- Author:
- CARE QUALITY COMMISSION
- Publisher:
- Care Quality Commission
- Publication year:
- 2016
- Pagination:
- 4
- Place of publication:
- Newcastle upon Tyne
This document outlines the barriers that prevented people with conditions other than cancer from receiving good care. The report is one of a suite of documents reporting on the Care Quality Commission end of life care thematic review, and is designed to be read in conjunction with the other documents. People reported that they felt that appropriate end of life care was not always available, and that the care they received was not as good as the care for people with cancer. The document focuses on key aspects of end of life care, including: unequal access to care; identifying the end of life phase; talking about end of life care; coordination of care; and care in the last days of life. The document sets out a number of key recommendations: providers of specialist palliative care services in all settings to take a proactive approach to meeting the needs of people with conditions other than cancer; health and care professionals, including GPs, to have early and ongoing conversations about care in the last phase of life as part of wider treatment and care planning; health and care staff to give people who may be approaching the end of life the opportunity to make advance care plans to record their wishes and choices about their care; and commissioners and providers to support staff by providing appropriate training in communication skills for end of life care. (Edited publisher abstract)
Moving healthcare closer to home: case study: Midhurst Macmillan Palliative Care Service: Sussex Community NHS Trust
- Author:
- MONITOR
- Publisher:
- Monitor
- Publication year:
- 2015
- Pagination:
- 5
- Place of publication:
- London
This is one of a suite of case studies designed to increase awareness of schemes to move healthcare closer to home. The Midhurst Macmillan Palliative Care Service provides acute-level care at home to patients nearing the end of their lives. Important features are personal case management to co-ordinate all aspects of care, a seven-day service and cross-skilled staff. Patients are assessed for psychosocial, medical and social needs at the same time. Single assessments help reduce stress and accelerate care planning. Counsellors work with patients and families before and after bereavement. (Edited publisher abstract)
Ambitions for palliative and end of life care: a national framework for local action 2015-2020
- Author:
- NATIONAL PALLIATIVE AND END OF LIFE CARE PARTNERSHIP
- Publisher:
- National Palliative and End of Life Care Partnership
- Publication year:
- 2015
- Pagination:
- 49
- Place of publication:
- London
This national framework for action sets out six ambitions – principles for how care for those nearing death should be delivered at local level. These include: each person is seen as an individual; each person gets fair access to care; maximising comfort and wellbeing; care is coordinated; all staff are prepared to care; and each community is prepared to help. For each ambition the report summarises what is already known and identifies what is needed to realise it. These are the foundations and building blocks which local health and social care leaders can use to build the accessible, responsive, effective, and personal care needed at the end of life. (Edited publisher abstract)