Search results for ‘Subject term:"end of life care"’ Sort:
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Scoping exercise on generalist services for adults at the end of life: research, knowledge, policy and future research needs: report 1: overview and recommendations for future research in generalist and end of life care
- Authors:
- HIGGINSON Irene J., et al
- Publisher:
- National Co-ordinating Centre for NHS Service Delivery and Organisation
- Publication year:
- 2007
- Pagination:
- 47p., bibliog.
- Place of publication:
- London
The aims of this study were to define what was meant and understood by generalist end of life care, to map the existing knowledge base, to identify methodological and ethical issues, to consult with stakeholders, and to assess how existing knowledge and research mapped against priority issues identified by stakeholders. It included a literature review and consultation with key informants associated with care at the end of life in London, Cambridgeshire and the East of England, Warwickshire, and Scotland, and in English national organisations. The report makes four recommendations for future research: primary research to define and evaluate models of collaborative working in primary and secondary end of life care, primary research to define and evaluate models of provision of generalist out of hours care at the end of life, a systematic literature review of place of care and place of death of people dying from non-malignant disease, and primary research to define and evaluate models and/or organisation of care of the dying in different settings.
Using evidence for transformation change for homecare workers and service users in palliative and end of life care
- Authors:
- IRISS, NHS EDUCATION FOR SCOTLAND
- Publisher:
- IRISS
- Publication year:
- 2017
- Pagination:
- 4
- Place of publication:
- Glasgow
Brings together evidence from research, practice, and improvement from three linked reports from the NHS Education for Scotland Networked Evidence Search and Summary Service on what works in supporting care at home staff providing palliative and end of life care. It reports that the role of care at home staff is emotionally and practically demanding, yet there is often little or no training or support. The report highlights what staff need to support them and the actions that need to be put in place. These include suggestions to improve staff access to information; learning and development needs; and service improvement in the areas of multi-agency communication and bereavement support. (Edited publisher abstract)
Living and dying well: a national action plan for palliative and end of life care in Scotland
- Author:
- SCOTLAND. Scottish Government
- Publisher:
- Scotland. Scottish Government
- Publication year:
- 2008
- Pagination:
- 38p.
- Place of publication:
- Edinburgh
This publication is the outcome of an extensive process of collaboration across Scotland, including the involvement of all special and territorial NHS Boards, Scottish Government Health and Community Care national improvement programmes, the Scottish Primary Care Cancer Group, the Care Commission, the Scottish Partnership for Palliative Care (SPPC), academic bodies, palliative care networks and key representatives of the voluntary sector, including voluntary hospices, national charities and umbrella bodies. The document is not intended to be a palliative care manual, but rather a plan to ensure that good palliative and end of life care is available for all patients and families who need it in a consistent, comprehensive, appropriate and equitable manner across all care settings in Scotland. It is intended for all health and social care policy makers, planners and practitioners, and is designed to produce achievable and measurable changes which will ensure quality improvement and enhance patient and carer experience. The document also identifies some changes which can be made in the short and medium term, and some which will take a little longer and will require further collaborative and developmental work, as well as additional input of time and resources.
Palliative and end of life care in Scotland: the case for a cohesive approach
- Author:
- SCOTTISH PARTNERSHIP FOR PALLIATIVE CARE
- Publisher:
- Scottish Partnership for Palliative Care
- Publication year:
- 2007
- Pagination:
- 64p.
- Place of publication:
- Edinburgh
This report provides recommendations to the Scottish Executive for developing a cohesive approach to palliative and end of life care in Scotland. The work was undertaken with the aim of ensuring equity in access to and standards of palliative and end of life care across Scotland on the basis of clinical need not diagnosis. This report focuses on those elements of palliative care which are likely to be delivered in the last 12 months of life, including both general palliative care and specialist palliative care.
Better care every step of the way: report on the quality of palliative and end of life care in care homes for adults and older people
- Author:
- CARE COMMISSION
- Publisher:
- Scottish Commission for the Regulation of Care
- Publication year:
- 2009
- Pagination:
- 23p.
- Place of publication:
- Dundee
This report aims to raise awareness of the need for good palliative and end of life care in all care homes. Palliative care is about ensuring a good quality of life for both residents and their families at every stage of a life limiting illness which can be from diagnosis onwards. One part of palliative care is care given towards the end of life, that is, care given in the last few months, days and hours of a person’s life. This report reflects findings between April 2007 and the end of March 2008 during 1,036 inspections and three investigations into complaints. The report focuses on whether staff in care homes have an understanding of what palliative and end of life care is, and how well they are delivering palliative and end of life care to residents and their families. Inspections showed that 587 (57%) of the care homes in the sample understood the importance of providing palliative and end of life care. Examples of good practice are given throughout the report. However the report found many care homes had fallen short of best practice. Recommendations are made.
Respecting the autonomy of the living and dying
- Author:
- STAVERT Jill
- Journal article citation:
- Journal of Integrated Care, 28(4), 2020, pp.379-385.
- Publisher:
- Emerald
Purpose: The purpose of this study is to inform those who are supporting persons who are dying and are responsible for planning, commissioning or delivering palliative care about the need to support and maximise the decision-making ability and choices of persons with advanced dementia or severe frailty. Design/methodology/approach: This article will consider the legal and human rights principles applicable to Scotland, and indeed to other jurisdictions, which govern decisions about care and treatment of persons with and without capacity and the application of these principles to palliative care situations. Findings: It is important that those involved in the care and support of the dying are fully aware of the need to support and maximise their decision-making ability concerning palliative care and treatment choices. Research limitations/implications: It is a well-established legal and human rights principle that the decisions of a person with capacity must be respected, including decisions about palliative care and treatment at the end of life. Moreover, recent developments in international human rights law reinforce the message that this principle applies equally to all. Applying this principle into persons with advanced dementia or severe frailty therefore requires skilled assessment and supported decision-making in order to optimise capacity and respect autonomy. Originality/value: The discussion applies the United Nations Convention on the Rights of Persons with Disabilities approach concerning equality of rights enjoyment and supported decision-making to palliative care and treatment situations. (Edited publisher abstract)
Care home residents who die in hospital: exploring factors, processes and experiences
- Authors:
- ALCORN Gemma, MURRAY Scott A., HOCKLEY Jo
- Journal article citation:
- Age and Ageing, 49(3), 2020, p.468–480.
- Publisher:
- Oxford University Press
Background: Care home residents are increasingly frail with complex health and social care needs. Their transfer to hospital at the end-of-life can be associated with unwanted interventions and distress. However, hospitals do enable provision of care that some residents wish to receive. This study aimed to explore the factors that influence hospital admission of care home residents who then died in hospital. Methods: This study combined in-depth case note review of care home residents dying in two Scottish teaching hospitals during a 6-month period and semi-structured interviews with a purposive sample of 26 care home staff and two relatives. Results: During the 6-month period, 109 care home residents died in hospital. Most admissions occurred out-of-hours (69%) and most were due to a sudden event or acute change in clinical condition (72%). Length of stay in hospital before death was short, with 42% of deaths occurring within 3 days. Anticipatory Care Planning (ACP) regarding hospital admission was documented in 44%. Care home staff wanted to care for residents who were dying; however, uncertain trajectories of decline, acute events, challenges of ACP, relationship with family and lack of external support impeded this. Conclusions: Managing acute changes on the background of uncertain trajectories is challenging in care homes. Enhanced support is required to improve and embed ACP in care homes and to provide rapid, 24 hours-a-day support to manage difficult symptoms and acute changes. (Edited publisher abstract)
Developing the Senses Framework to support relationship-centred care for people with advanced dementia until the end of life in care homes
- Author:
- WATSON Julie
- Journal article citation:
- Dementia: the International Journal of Social Research and Practice, 18(2), 2019, pp.545-466.
- Publisher:
- Sage
People with advanced dementia living in care homes can experience social death before their physical death. Social death occurs when a person is no longer recognised as being an active agent within their relationships. A shift is required in how we perceive people with advanced dementia so that the ways they continue to be active in their relationships are noticed. Paying attention to embodied and interembodied selfhood broadens the scope and opportunities for relationships with people with advanced dementia, acting as a counter to social death. This has the potential to improve the quality of care, including end of life care, of people with advanced dementia in care homes. This study examined the role of embodied and interembodied selfhood within care-giving/care-receiving relationships in a specialist dementia care home. Empirical findings and their implications for the development of relationship-centred care and the Senses Framework in care homes are discussed. (Publisher abstract)
Trees that bend in the wind: exploring the experiences of front line support workers delivering palliative and end of life care
- Author:
- SCOTTISH CARE
- Publisher:
- Scottish Care
- Publication year:
- 2017
- Pagination:
- 47
- Place of publication:
- Ayr
This report highlights the experiences of front line support workers working in home care and care home services who are caring for people with palliative and end of life care needs. A total of 50 staff in four areas of Scotland took part in structured focus groups, and their views and experiences are discussed across the following themes: the individual nature of palliative and end of life care; the complexity and variety of skills required to deliver palliative and end of life care; the importance of experience; what constitutes good person-centred palliative and end of life care; how staff manage the emotional challenges of their work; and the value attached to end of life and palliative care. The report highlights the potential contribution of social care staff to supporting the work of Integrated Joint Boards in achieving positive end of life outcomes, including the benefits of joint team-working and the value of Anticipatory Care Planning. It also stresses the need to explore the role of commissioning practice in relation to palliative and end of life care in social care delivery. The report makes recommendations for the future direction of palliative and end of life care in Scotland based on the principle of person-centred integrated services. (Edited publisher abstract)
Dying to care: a report into social care at the end of life
- Author:
- MARIE CURIE
- Publisher:
- Marie Curie
- Publication year:
- 2016
- Pagination:
- 28
- Place of publication:
- London
This report, produced by Marie Curie in partnership with Hospice UK, the Association of Palliative Care Social Workers, and MND Scotland, looks at the role social care services play in supporting people with palliative care needs or at the end of life in Scotland. It explains how social care can help people to remain at home, get out of hospital, stay connected to their communities and live as well as possible before they die. It highlights the increasing number of people in Scotland who need palliative care services as more people are living longer with increasingly complex conditions, the numbers currently receiving services and levels of unmet need. It also identifies barriers that get in the way of good social care at the end of life and the ways in which services can improve to ensure that people get the care they need. These include: communication, access to rapid support and timely assessment, age appropriate support and availability of social security benefits. The report explains how, in order to meet future demand at end of life, the professional care workforce, informal carers such as families and friends, and volunteers will need to support people with palliative social care needs. The report includes the following recommendations: ensure social care packages start immediately when they are needed and that they are adaptable to changes, end social care charges for people living with any terminal illness, improved sharing of patient information between health and social care teams, fast track devolved benefits for patients and their carers, and improved palliative care and bereavement training for professionals. (Edited publisher abstract)