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The Gold Standards Framework

Author:
GSF Centre CIC
Publisher:
GSF CENTRE CIC
Place of publication:
Shrewsbury

The Gold Standards Framework (GSF) is a systematic evidence based approach to optimising the care for patients nearing the end of life delivered by generalist providers. It is concerned with helping people to live well until the end of life and includes care in the final years of life for people with any end stage illness in any setting. The National GSF Centre CIC is the national training and coordinating centre for all programmes, enabling generalist frontline staff to provide quality care for people nearing the end of life, whatever their illness, wherever the setting. It aims to support best implementation of GSF in all settings, using a common framework and toolkit of resources. GSF improves the quality, coordination and organisation of care in primary care, care homes and acute hospitals. This enables more patients to receive the type of care they want, in their preferred place, with greater cost efficiency through reduced hospitalisation.

Journal

BMJ Supportive and Palliative Care

Publisher:
BMJ Publishing Group

Published quarterly in print and continuously online, this journal connects many disciplines and specialities throughout the world by providing high quality, clinically relevant research, reviews, comment, information and news of international importance. The journal aims to be relevant to a wider range of clinician and healthcare workers working with palliative medicine, specialist or generalist palliative care, supportive care, psychosocial-oncology and end of life care. Coverage on Social Care Online from this journal is limited to relevant systematic reviews only. (Edited publisher abstract)

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Dementia: managing end-of-life problems (palliative care)

Author:
NHS EVIDENCE
Publisher:
NHS Evidence
Publication year:
2010
Place of publication:
London

This Clinical Knowledge Summaries draws on evidence-based information and practical information about managing end of life care for people with dementia. It includes an overview of the principles of palliative care and managing common end-of-life problems. Key points are presented in a clear and informative style. Includes an example scenario on managing end-of-life care. Aimed primarily at healthcare professionals working in primary and first-contact care.

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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.

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Phasing out the Liverpool Care Pathway: a briefing for social care providers

Authors:
SOCIAL CARE INSTITUTE FOR EXCELLENCE, et al
Publisher:
Social Care Institute for Excellence
Publication year:
2013
Pagination:
2
Place of publication:
London

This briefing answers the key questions that social care providers may have about the use of the Liverpool Care Pathway following the Government announcement that the Pathway will be phased out and replaced with an end of life care plan. The briefing has been produced by SCIE in association with Care Providers Alliance, English Community Care Association and United Kingdom Homecare Assocation. (Original abstract)

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The role of care homes in end of life care. Briefing 2: place and cause of death for permanent and temporary residents of care homes

Author:
NATIONAL END OF LIFE CARE INTELLIGENCE NETWORK
Publisher:
Public Health England
Publication year:
2017
Pagination:
14
Place of publication:
London

This briefing paper describes recent trends in the demographics of people who receive end of life care in a care home, presenting data on the place and cause of death for permanent and temporary residents of care homes. It also provides analyses of variation by geographical region. It reports that nearly two thirds (62 per cent) of people who died in care homes have dementia or Alzheimer’s disease as an underlying or contributory cause of death. It is the second of two briefings produced by National End of Life Care Intelligence Network to describe the important role that care homes play in the care of people at the end of life. (Edited publisher abstract)

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Palliative and end of life care delivery plan

Author:
NHS WALES
Publisher:
Welsh Government
Publication year:
2017
Pagination:
27
Place of publication:
Cardiff

A three year plan outlining how NHS Wales intend to improve palliative and end of life care services for patients and their families though 2017-2020. The plan covers all aspects of palliative and end of life care, delivered by both primary and secondary care and the voluntary sector. It also details specific priorities across the themes of: supporting living and dying well; detecting and identifying patients early; delivering fast effective care; reducing the distress of terminal illness for patients and their families; improving information; targeting research; and education and training. (Edited publisher abstract)

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Delivering high quality end of life care for people who have a learning disability: resources and tips for commissioners, service providers and health and social care staff

Authors:
NHS ENGLAND, PALLIATIVE CARE FOR PEOPLE WITH LEARNING DISABILITIES
Publisher:
NHS England
Publication year:
2017
Pagination:
57
Place of publication:
Redditch

This ‘top tips’ guide aims to support commissioners, providers and clinicians to reduce inequalities in palliative and end of life for people with a learning disability, focusing on ‘The Ambitions for Palliative and End of Life Care’. These six ambitions, which provide a framework for national and local health and care system leaders to take action to improve palliative and end of life care, 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; Each community is prepared to help. This document sets how to achieve each ambition, signposts relevant tools and resources and provides good practice examples. (Edited publisher abstract)

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Good decision making: what you need to know about the Mental Capacity Act and end of life care

Authors:
NATIONAL COUNCIL FOR PALLIATIVE CARE, DYING MATTERS COALITION
Publishers:
National Council for Palliative Care, Dying Matters Coalition
Publication year:
2017
Pagination:
20
Place of publication:
London
Edition:
2nd

This booklet provides information to help people approaching the end of life, their families and carers, and health and social care staff to understand the Mental Capacity Act (MCA) and how it affects decision-making at the end of life. It explains how people can use the MCA to express and protect their wishes about their future care and what it means for carers. It includes information on assessing a person’s capacity to make a decisions, making a best interests decisions, Independent Mental Capacity Advocates, and Deprivation of Liberty Safeguards (DOLS). (Edited publisher abstract)

Journal article

The will-to-live scale: development, validation, and significance for elderly people

Author:
CARMEL Sara
Journal article citation:
Aging and Mental Health, 21(3), 2017, pp.289-296.
Publisher:
Taylor and Francis

Objectives: In old age, the will-to-live (WTL) is one of the most important indicators of subjective well-being (SWB). However, few studies to date have focused on WTL. In these studies, WTL has mainly been evaluated via indirect questions concerning factors that may influence peoples’ WTL, or by measures directed to patients with specific diseases. The current study describes the development and psychometric properties of a new WTL scale. Method: The five-item WTL scale was developed on the basis of previous qualitative and quantitative research, and was evaluated in a longitudinal study of a random sample of 868 adults, aged 75+. Results: Confirmatory factor analytic (CFA) models were computed showing that each of the five items contributed significantly to measurement of a single WTL latent factor. Goodness-of-fit statistics were in ideal parameters for these CFA models at each point of data collection. Moreover, temporal analyses indicated that the relative contribution to measurement for each item was equivalent across time, attesting to reliability of measurement and the construct validity of WTL measurement. Concurrent validity was supported by significant positive correlations between WTL and life satisfaction, happiness, self-rated health, morale, self-rated aging, and, as expected, by inverse associations of WTL with depression and loneliness. Conclusion: The results of these analyses indicate that the WTL scale is a valid and reliable instrument. Considering the importance of the WTL concept in late life, and the psychometric properties of the WTL scale, the authors recommend it for use in research and practice related to older adults’ SWB and end-of-life care. (Edited publisher abstract)

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