Search results for ‘Subject term:"end of life care"’ Sort:
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Follow-up to PHSO report: dying without dignity. First Report of Session 2015–16
- Author:
- GREAT BRITAIN. Parliament. House of Commons. Public Administration Select Committee
- Publisher:
- The Stationery Office
- Publication year:
- 2015
- Pagination:
- 25
- Place of publication:
- London
This is a follow-up to the ‘Dying without dignity’ report which identified systemic issues affecting the quality and delivery of end of life care and used case studies to show how patients—and those close to them—had been affected by poor care. This report outlines the key areas in which significant and fast-paced improvements are expected. These are: culture, behaviour and training; the provision of integrated, 24/7 palliative and End of Life Care (EOLC) services; and leadership and commissioning. It also invites the Government to set out how it will ensure that the necessary improvements to end of life care provision are delivered. The report highlights the need to ensure that progress can be assessed objectively and suggests that clear targets for improvement are needed to enable such assessments. It concludes that comprehensive monitoring and reporting of progress against targets will also be required, and the Government must set out where responsibility for improving and monitoring end of life care lies. (Edited publisher abstract)
National End of Life Care Intelligence Network: what we know now 2014
- Author:
- NATIONAL END OF LIFE CARE INTELLIGENCE NETWORK
- Publisher:
- Public Health England
- Publication year:
- 2015
- Pagination:
- 55
- Place of publication:
- London
This report is a compilation of key findings and information on end of life care that was produced by NEoLCIN and its partners during 2014. It shows that there is a growing understanding within the health sector of what is important to people at the end of life. Key findings from the report include: the proportion of people dying at home or in care homes continues to increase; patients with an Electronic Palliative Care Co-ordination System (EPaCCS) record and those receiving palliative care services such as hospice at home, Gold Standards Framework or Macmillan services are more likely to die in the place of their preference; two in five people with dementia die in hospital, indicating that the trend towards increasing hospital deaths for people living with dementia has reversed; factors most important to people at the end of their life were having pain and other symptoms managed effectively, being surrounded by loved ones and being treated with dignity; and more GPs are having conversations with people about their end of life care wishes but 25 per cent still say they have never initiated such a conversation. (Edited publisher abstract)
Dying without dignity: investigations by the Parliamentary and Health Service Ombudsman into complaints about end of life care
- Author:
- PARLIAMENTARY AND HEALTH SERVICE OMBUDSMAN
- Publisher:
- Parliamentary and Health Service Ombudsman
- Publication year:
- 2015
- Pagination:
- 27
- Place of publication:
- London
Using 12 cases from different health care settings this report illustrates some of the main themes that the Parliamentary and Health Service Ombudsman come across when investigating complaints in end of life care. Key themes identified are: not recognising that people are dying, and not responding to their needs; poor symptom control; poor communication; inadequate out-of-hours services; poor care planning; and delays in diagnosis and referrals for treatment. The report supports several of the findings from the House of Commons Health Select Committee report on End of Life Care, in particular the need for more access to palliative care services; improved resources for support in the community; and better leadership. It calls for the Ambitions for End of Life Care Partnership to use the findings to improve standards and quality of end of life care in England. (Edited publisher abstract)
Care after death: guidance for staff responsible for care after death
- Author:
- WILSON Jo
- Publisher:
- Hospice UK
- Publication year:
- 2015
- Pagination:
- 34
- Place of publication:
- London
This guidance aims to help ensure that a person who has died is cared for and that there is well co-ordinated support which respects the wishes of the deceased and their families. The document is aimed at the different professionals involved in care and support for people just before and after death, including: nurses, doctors, mortuary staff, ambulance staff, pathologists and funeral directors. The guidance covers many different aspects of care after death for adults including: respecting the religious or cultural wishes of the deceased and their family where possible and ensuring legal obligations are met; ensuring timely verification of death; preparing the deceased for viewing, where appropriate, and supporting the family; offering the family present the opportunity to participate in the process and supporting them to do so; ensuring, where relevant, that families are informed about the need for post mortem examination and given information about tissue retention and disposal methods; preparing the deceased for transfer to the mortuary or the funeral directors premises; ensuring the privacy, dignity and respect of the deceased is maintained at all times; facilitating people’s wishes for organ donation; and returning the deceased’s property. (Edited publisher abstract)
Living and dying with dignity in Chinese society: perspectives of older palliative care patients in Hong Kong
- Authors:
- HO Andy Hau Yan, et al
- Journal article citation:
- Age and Ageing, 42(4), 2013, pp.455-461.
- Publisher:
- Oxford University Press
Background: The empirical Dignity Model has profoundly influenced the provision of palliative care for older terminally ill patients in the West, as it provides practical guidance and intervention strategies for promoting dignity and reducing distress at the end-of-life. Objective: To examine the concept of ‘living and dying with dignity’ in the Chinese context, and explore the generalisability of the Dignity Model to older terminal patients in Hong Kong. Methods: using qualitative interviews, the concept of dignity was explored among 16 older Chinese palliative care patients with terminal cancer. Framework analysis with both deductive and inductive methods was employed. Results: The three major categories of themes of the Dignity Model were broadly supported. However, the subtheme of death anxiety was not supported, while two subthemes of generativity/legacy and resilience/fighting spirit manifested differently in the Chinese context. Furthermore, four new emergent themes have been identified. They include enduring pain, moral transcendence, spiritual surrender and transgenerational unity. Conclusion: These findings highlight both a cultural and a familial dimension in the construct of dignity, underline the paramount importance of cultural awareness and competence for working with ethnically diverse groups, and call for a culturally sensitive and family oriented approach to palliative care interventions with older Chinese terminal patients. (Publisher abstract)
National bereavement survey (VOICES) 2012: England
- Author:
- GREAT BRITAIN. Office of National Statistics
- Publisher:
- Great Britain. Office for National Statistics
- Publication year:
- 2013
- Pagination:
- 18
- Place of publication:
- London
The National Bereavement Survey (VOICES) aims to assess the quality of care delivered in the last three months of life for adults who died in England and to assess variations in the quality of care delivered in different parts of the country and to different groups of patients. The survey participants were 49,207 bereaved relatives of individuals whose death was registered from 1st January 2012 and 30th April 2012. Key findings are presented on the following themes: quality of care; dignity and respect; coordination of care; pain relief; decision making; preferences and choice; support for relatives, friends and carers; and quality of care for people with dementia. (Original abstract)
Do models of care designed for terminally ill ‘home alone’ people improve their end-of-life experience? A patient perspective
- Authors:
- AOUN Samar, et al
- Journal article citation:
- Health and Social Care in the Community, 20(6), November 2012, pp.599-606.
- Publisher:
- Wiley
People living alone with a terminal illness are less likely to die at home than those living with a family carer. This article discusses models of care that can extend the period of care at home for dying people living alone, whilst supporting quality of life and maintaining a sense of dignity. The study, conducted by a community-based hospice care service in Western Australia, tested 2 models of care for dying people who live alone at home. The first model consisted of a pendant with a button that the patients can press in an emergency to link them to a call centre. The second model consisted of an extra 30 hours of care-aide support over the 3-month period. Twenty six palliative care patients were randomly assigned to either having a personal alarm or additional care-aide hours. All patients were interviewed post intervention about the benefits and barriers experienced with the model of care they used. In addition, 8 patients completed in-depth semi-structured interviews. The findings showed that the care-aide model of care resulted in benefits such as: easing the burden of everyday living; supporting well-being; enhancing quality of life and preserving a sense of dignity; and reducing loneliness and isolation. The personal alarm model of care: imparted a sense of security; provided peace of mind; and helped to deal with feelings of isolation. Participants in both groups felt that they could remain at home longer.
Maintaining dignity in later life: a longitudinal qualitative study of older people's experiences of support and care
- Authors:
- LLOYD Liz, et al
- Publisher:
- New Dynamics of Ageing
- Publication year:
- 2011
- Pagination:
- 3p.
- Place of publication:
- Sheffield
In later life, health problems can be complex and life-threatening and lead to a loss of independence, identity and dignity. This briefing summarises the findings of a study to examine preparations for the end of life made by older people with supportive care needs and the factors that support or undermine a sense of dignity. The participants were 34 individuals aged 70 years and over who lived at home and had health problems that required support and care to varying degrees. Participants were interviewed several times over the period between June 2008 and December 2010 about the changes occurring in their everyday lives and whether they felt the help they received promoted or undermined their dignity. All the participants talked about the challenges their health problems posed to their sense of self and their identity. Their accounts highlight the ways in which older people adapt to a growing need for help whilst also striving to maintain their independence. The evidence shows that thoughtless and unkind behaviour exacerbates the loss of dignity and sense of self whilst sympathetic and respectable care can help to maintain it.
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)
The impact of providing end-of-life care during a pandemic on the mental health and wellbeing of health and social care staff: systematic review and meta-synthesis
- Authors:
- PORTER Bryony, et al
- Journal article citation:
- Social Science and Medicine, 287, September 2021, p.114397.
- Publisher:
- Elsevier
Background: Disease outbreaks and disasters can result in excess deaths and severe disruption of usual end-of-life care processes. We aimed to: i) synthesise evidence describing the experiences of health and social care staff providing end-of-life care during a disease outbreak or humanitarian disaster, ii) understand the impact on their mental health and wellbeing and, iii) identify means of support. Methods: A systematic review with meta-synthesis was conducted including studies of health and social care staff providing end-of-life care during disease outbreaks (Ebola, COVID-19, SARs, MERs) or humanitarian disasters (2001–2020). MEDLINE (Ovid), Embase, PsycInfo, Web of Science, and grey literature databases were searched systematically, with forward and backward citation searching of included studies. Any research study designs, in any care settings, were included. Study quality was assessed using an appraisal tool relevant to each study design. Qualitative meta-synthesis was used to analyse the findings, which were then reported narratively. PROSPERO registration: CRD42020181444. Results: Nineteen studies were included, including 10 Ebola studies and two COVID-19 studies. The analysis generated two superordinate themes: individual experience and organisational responsibilities. Individual experience comprised four themes: dignity in death, positive experiences, negative experience and support for staff. Organisational responsibilities comprised four themes: preparation, adaption, resources, and Personal Protective Equipment (PPE). Discussion: No studies quantitively measured the impact of providing end-of-life care on staff mental health and wellbeing, however qualitative studies described experiences in varied settings. Serious disease outbreaks and disasters can expose care staff to abnormally high levels of mortality and suffering. Health and social care systems need to proactively prepare for future events and enable peer support mechanisms that may help mitigate experiences of psychological distress in humanitarian crises. (Edited publisher abstract)