Search results for ‘Subject term:"end of life care"’ Sort:
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End of life care audit: dying in hospital. National report for England 2016
- Author:
- ROYAL COLLEGE OF PHYSICIANS
- Publisher:
- Royal College of Physicians
- Publication year:
- 2016
- Pagination:
- 110
- Place of publication:
- London
Reports on the results of the second biennial national audit of care of the dying in hospitals in England. The audit is the first to be carried out following the official withdrawal of the Liverpool Care Pathway (LCP) and provides a detailed investigation of the care of dying people against the five priorities of care established in ‘One Chance to Get it Right’. The audit comprised of an organisational audit and a case note review. In total, 142 sites from 137 out of 142 possible trusts submitted data to the organisational audit and 9302 unique patient datasets were submitted. The results show that there has been steady progress in the care of dying people since the previous audit carried out in 2013. Improvements were found in: recognition that patients are dying and that they have received holistic assessments of their care; the amount and quality of communication; symptom control; and a commitment to education, training, reporting and continuous improvement in caring for dying people. The audit also identified a number of areas that need improvement, including the provision of 24-7 palliative care services. A list of key recommendations from the organisational audit and the case note review are included. The audit was funded by NHS England and Marie Curie, and commissioned by the Healthcare Quality Improvement Partnership. (Edited publisher abstract)
National Audit of Care at the End of Life: third round of the audit (2021/22) report: England and Wales
- Author:
- HEALTHCARE QUALITY IMPROVEMENT PARTNERSHIP
- Publisher:
- Healthcare Quality Improvement Partnership
- Publication year:
- 2022
- Pagination:
- 37
- Place of publication:
- London
This report set outs the findings of the third round of NACEL which took place in 2021. Results are compared to round two, which took place in 2019. The audit was not undertaken in 2020, due to the Covid-19 pandemic. The audit comprised: an Organisational Level Audit covering Trust/Health Board (T/HB) and hospital/submission (H/S) level questions for 2020/21; a Case Note Review (CNR) which reviewed 20 consecutive deaths between 12th April 2021 and 25th April 2021 and 20 consecutive deaths between 1st May 2021 and 14th May 2021 for acute providers and up to 40 consecutive deaths in April and May 2021 for community providers; a Quality Survey (QS) completed online, or by telephone, by the bereaved person; and new for 2021, a Staff Reported Measure (SRM), completed online. Key themes are taken from one audit element only, each element uses a different sample and therefore cannot be compared. Data for all elements of the audit was collected between June and October 2021. The report finds that results on all key metrics regarding the recording of conversations with the dying person remain similar to 2019, pre-pandemic levels. However, from the Quality Survey, the proportion strongly disagreeing or disagreeing with the statement 'staff communicated sensitively with the dying person' increased from 7% (2019) to 11%. Findings from the Case Note Review in 2021 suggest continued strong compliance on involvement in decision making, with similar results to those reported when this theme was last tested in 2018. However, from the Quality Survey, in 2021, 23% of people felt they would like to be more involved in the person's care compared to 19% in 2019. Third round findings from the Case Note Review showed similar results for the existence of an individualised plan of care, 73% of cases compared to 71% in 2019, suggesting this is an ongoing area for improvement. The overall rating of care and support to the person who died, and the overall rating of care and support provided to families and others, are lower than in 2019. (Edited publisher abstract)
A decision aid to support family carers of people living with dementia towards the end-of-life: Coproduction process, outcome and reflections
- Authors:
- DAVIES Nathan, et al
- Journal article citation:
- Health Expectations, 24(5), 2021, pp.1677-1691. Online only
- Publisher:
- Wiley
Background: Family carers of people living with dementia often need support with making decisions about care. Many find end-of-life care decisions particularly difficult. The aim of this article is to present an evidence- and theoretical-based process for developing a decision aid to support family carers of people with dementia towards the end-of-life. Methods: Following a systematic process, we developed a decision aid using coproduction methods and matrices to synthesize data from a systematic review and qualitative interviews with people living with dementia and family carers. Data were presented to coproduction workshops of people living with dementia, family carers, practitioners and professionals. Development was guided by the Ottawa Decision Support Framework and a modified Interprofessional Shared Decision-Making model. Results: The decision aid covers four decision areas: (1) changes in care; (2) eating and drinking difficulties; (3) everyday well-being; and (4) healthcare, tests and medication. We present an interactive decision aid, using a variety of approaches including written text, Frequently Asked Questions, top tips and illustrative quotes from people living with dementia and family carers. Conclusion: This is the first decision aid that focusses on multiple decisions towards the end-of-life in dementia care. The process offers a template for others to develop decision aids or similar interventions, and how to include people living with dementia in coproduction. Patient or Public Contribution: Family carers provided feedback on data collection, data analysis and the decision aid, and one is a coauthor. People living with dementia and family carers were integral to the coproduction workshops. (Edited publisher abstract)
A national review of choice in end of life care: consultation paper and response form
- Author:
- CHOICE REVIEW
- Publisher:
- National Council for Palliative Care
- Publication year:
- 2014
- Pagination:
- 7
- Place of publication:
- London
A consultation document seeking views on the choices that are important to people at the end of life, what they would mean in practice and whether and how they could be made a reality. Almost half a million people die in England each year. However, significant numbers of people do not currently have proper opportunities for their choices about how, when and where they receive end of life care to be identified, discussed or met. This consultation is part of a Government review of choices in end of life care – to help shape its national choice offer. The review is being undertaken by an independent programme board, chaired by the Chief Executive of the National Council for Palliative Care. The information gathered will outline the kinds of choices that people would like to be able to make at the end of life and information about the funding, systems and processes that would be needed to enable choices to be acted upon. The review focuses on end of life care for adults aged 18 and over, and within the current legal framework. Therefore, it does not focus on assisted dying or anything that would involve changes to mental capacity legislation. The consultation period closes on 30 September 2014. (Edited publisher abstract)
Getting started: involving people with personal experience
- Author:
- NATIONAL COUNCIL FOR PALLIATIVE CARE
- Publisher:
- National Council for Palliative Care
- Publication year:
- 2010
- Pagination:
- 10p.
- Place of publication:
- London
This document is an introductory guide to user involvement in end of life care. It aims to show why it’s important to involve people, the potential benefits, and how to get started. User involvement is about people with personal experience, such as patients and carers, having a genuine stake in how services are commissioned, developed and provided. It is based on: recognition of people with personal experience’s unique expertise and insight, which comes from firsthand knowledge of conditions and services; and the right of patients, families and carers to have a say in how services are delivered. The document considers various problems in involving users in end of life care, and suggests a number of ways of connecting with people. It concludes by considering the way forward.
Dignity in care
- Author:
- SOCIAL CARE INSTITUTE FOR EXCELLENCE
- Publisher:
- Social Care Institute for Excellence
- Publication year:
- 2020
- Place of publication:
- London
This practical guide helps to define dignity in care, as well as how best to implement it. Care with dignity is a central part of quality in care work – it supports the self-respect of the person, recognising their capacities and ambitions, and does nothing to undermine it; and it values what they can do, who they are, and the life they have lived. The guide is aimed at care providers, managers and staff who work with adults – especially older adults. It defines the meaning of real everyday dignity to the lives of people receiving social care, their carers, families and friends, as well as the managers and staff who provide it. Topics discussed include: defining dignity; recognising the individual; skills and strengths; communication; freedom to choose; privacy; involvement and inclusion; warmth and kindness; a dignified life; and a dignified death. Throughout the guide, the links between dignity and key policy issues, including Care Quality Commission (CQC) regulations, are highlighted. (Edited publisher abstract)
Exploring the utilization of end-of-life documentation among an online sample of sexual- and gender-minority individuals in the United States
- Authors:
- MARSACK Jessica, STEPHENSON Rob
- Journal article citation:
- Journal of Gay and Lesbian Social Services, 29(3), 2017, pp.273-279.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia, USA
Lesbian, gay, bisexual, transgender, and queer (LGBTQ) persons often receive end-of-life care incongruent with wishes. Evidence with heterosexual samples supports associations among end-of-life documentation (do not resuscitate [DNR] orders, durable power of attorney for health care orders [DPOAH], living wills [LW]), and care consistent with wishes. However, little is known about the knowledge, attitudes, and willingness regarding utilisation of these documents among LGBTQ persons. Of 107 participants, most had heard of each document (95% DNR, 91% DPOAH, 97% LW), but had not procured them (26% DNR, 50% DPOAH, 51% LW). Answers above 4 on a 5-point Likert scale indicated willingness to pursue these documents and belief documents would be enforced. However, approximately one-third of respondents believed documents would be enforced more for heterosexual persons than themselves. This result indicates sexuality or gender minority-related stigma may be a barrier to document utilisation. Future research, policies, and guidelines should address these concerns. (Edited publisher abstract)
Our commitment to you for end of life care: the Government response to the Review of Choice in End of Life Care
- Author:
- GREAT BRITAIN. Department of Health
- Publisher:
- Great Britain. Department of Health
- Publication year:
- 2016
- Pagination:
- 60
- Place of publication:
- London
Government response to an independent review of choice in end of life care which sets out a national commitment to ensure that all people to have high quality, personalised end of life care built around their needs and preferences. It outlines six commitments to end variation in end of life care across the health system by 2020. These are: honest discussions between care professionals and dying people; dying people making informed choices about their care; personalised care plans for all; the discussion of personalised care plans with care professionals; the involvement of family and carers in dying people’s care; and a main contact so dying people and their families know who to contact at any time. Part Two sets out the detail of the vision to support and deliver the commitment. This will be achieved through greater personalised care, improvements to quality of end of life care in all settings, identifying and spreading innovation and best practice, improved leadership and commissioning, a skilled workforce, partnership working to improve care and increase community resilience and strengthened accountability and transparency. (Edited publisher abstract)
Bridging the gap: strengthening relations between hospices and Muslims of Britain
- Authors:
- AHMED Sughra, SIDDIQI Naved
- Publisher:
- Woolf Institute
- Publication year:
- 2015
- Pagination:
- 45
- Place of publication:
- Cambridge
Explores the extent to which hospices and Muslim communities are reaching out to each other and working together. The study looked at the top five local authorities in the UK where there is a significant Muslim population and identified the lack of data on religion and ethnicity as a key barrier in planning and monitoring services for people in Muslim communities, including both ageing Muslims and children with life-shortening conditions. The report highlights some excellent examples of good practice by hospices to broaden access to their services, through communication, engagement with the local community and good spiritual and cultural understanding, particularly in relation to children’s hospices. In addition to tackling data gaps, the report’s key recommendations include: hospices and other providers should use specialist community television and radio outlets to promote their services to people from Muslim communities; Muslim burial services and mosques should store more detailed information on a deceased person’s end of life care, including a clear record of where a death occurred; hospices should actively seek to communicate with local Muslim women through groups and clubs, as well as other services like maternity classes and neonatal services. The report also includes a framework of measures for hospices to increase their engagement with people from Muslim communities. These include: inviting Muslims to become trustees and employing bilingual Muslim staff across clinical and non-clinical teams. (Edited publisher abstract)
Experiences of integrated care and the Integrated Care Ageing team
- Author:
- HEALTHWATCH ISLINGTON
- Publisher:
- Healthwatch Islington
- Publication year:
- 2015
- Pagination:
- 10
- Place of publication:
- London
Outlines users' experiences of the Integrated Care Ageing Team (ICAT) service and how care home residents and carers are being involved in their treatment, and in conversations about their end of life care. The ICAT service has been set up so that patients are seen by a medical specialist in older people's health who considers their needs holistically and tries to coordinate their care. The ICAT service is based both at Whittington Health and University College Hospital. In all, twenty interviews were conducted that provided information on eleven service users' experience of the ICAT service. Seven interviews were held with the service user, three with a relative of the service user, and ten interviews were conducted with a member of staff closely associated with the care of the service user. The report examines the health improvements from the ICAT intervention, the level of involvement of service users and relatives, the relationship between service users and ICAT doctors, issues of privacy, discharge from hospital, end of life care, and the relationship with care home staff. The report shows that although service users and relatives were not particularly aware of the ICAT service specifically, integration seems to be working with the service. Service users who could remember, and relatives, generally reported that the service had known who they were and that the service user's story had not needed to be repeated. Nursing home staff also noted that the ICAT service had enabled them to provide a better service to the users. There was positive feedback about service users and relatives being involved appropriately in service users' care and similarly about respect for their privacy in the delivery of care. (Edited publisher abstract)