BrumYODO is a local collective set up with the aim of encouraging people to talk about death and dying in Birmingham.
Lack of openness and willingness to talk about death and dying has affected the quality of and access to support services for people at the end of their lives.
We spoke with people who may be less likely to receive good care – whether because of diagnosis, age, ethnic background, sexual orientation, gender identity, disability or social circumstances – to tell us about their experience of end of life care, and the barriers which may prevent them from experiencing good, personalised care at the end of life.
In the last year an estimated 48,000 people in England experienced poor care in the last 3 months of their life[i], a new report from a coalition of charities today warns. This represents 10 per cent of people who died and is based on responses from relatives and carers collected by the Office of National Statistics (ONS).
The need to ‘fight’ and remain positive could be having a negative effect on people living with cancer, a new report from Macmillan Cancer Support has revealed.
When palliative care expert Jane Carpenter’s homeless cousin died in a traffic accident and a post-mortem revealed he had advanced cancer, she decided to make a difference for others like him. To read the full article, log in using your NHS OpenAthens details
Discover how applying a flexible approach to training can have a positive impact on patient care, in a new case study from Kent Community Health NHS Trust.
By delivering more than 850 training sessions to staff in dispersed locations, the trust has:
improved the end-of-life care service being delivered to patients;
increased staff confidence in having end-of-life care conversations.
An end of life care service is providing joined-up care for patients. Care co-ordinators arrange packages of care so patients can die in the place of their choice – often at home. The result is high satisfaction rates among patients, families and staff. To read the full article, log in using your NHS OpenAthens details
Open access. The aim of this study was to examine the reported characteristics of extant studies on palliative care for patients with idiopathic pulmonary fibrosis.
A palliative care charity has devised a new approach to end of life care based on the Human Rights Act. Login using your SSSFT NHS OpenAthens details for full text. SSOTP - You can request a copy of this article by replying to this email. Please ensure you are clear which article you requesting.
To explore community nurses’ decision-making processes around the prescribing of anticipatory medications for people who are dying. Login using your SSSFT NHS OpenAthens for full text. SSOTP - You can request a copy of this article by replying to this email. Please ensure you are clear which article you are requesting.
Advance care planning (ACP) aids can help prepare patients, family members, and physicians for in-the-moment medical decision-making. We wished to describe the content and approach of paper-based ACP aids in order to characterize existing aids and inform the development of a new ACP aid. Open Access Article
There is huge variation in the quality of care that people receive at the end of their life.
A second class ending: discussion paper cover
People whose needs are the most overlooked are often those who are least able to advocate for themselves. This is particularly true for people experiencing homelessness.
Open access. Increasing attention to palliative care for the general population has led to the development of various evidence-based or consensus-based tools and interventions. However, specific tools and interventions are needed for people with severe mental illness (SMI) who have a life-threatening illness. The aim of this systematic review is to summarize the scientific evidence on tools and interventions in palliative care for this group.
Findings demonstrate that families hold an inherent capacity to make meaning of the death and enact family thereafter. Family relations arose as interplay of different, contradicting forces. Nurses should facilitate families’ meaning-making of the death, attend to their converging and diverging sense of loss and strengthen family caring. Login using your SSSFT NHS OpenAthens for full text. SSOTP - You can request a copy of this article by replying to this email. Please ensure you are clear which article you are requesting.
People experiencing homelessness often encounter progressive incurable somatic diseases in combination with psychiatric and psychosocial problems, and many need palliative care at the end of their lives. Little is known about how palliative care for this group can be started in good time and provided optimally. The objective of this paper is to give insight into the extent people experiencing homelessness have access to good palliative care. Open Access Article
A national review by the Care Quality Commission (CQC) has found that people from certain groups in society are experiencing poorer quality care at the end of their lives than others because providers and commissioners do not always understand or fully consider their specific needs.
To explore palliative care nurses’ attitudes, roles and concrete experience with regard to addressing sexual issues in their daily practice.. To read the full article, log in using your SSSFT NHS OpenAthens details. SSOTP - You can request a copy of this article by replying to this email. Please ensure you are clear which article you are requesting.
Aim:
To investigate the association between advance care planning (ACP) and home death in patients with advanced cancer. To read the full article, log in using your MPFT NHS OpenAthens details.
This article is part of Evidence Based Nursing (EBN) Perspectives. In this series, commentaries from the past 2 years from a specific nursing theme are brought together and highlights are discussed. The topic for this edition is advance care planning and palliative care. From October 2014 to the October 2016 edition, 12 commentaries were published on the chosen topic. Key themes are extrapolated from these commentaries, and the implications for practice and future research are explored. To read the full article, log in using your NHS OpenAthens details
EBN Perspectives brings together key issues from the commentaries in one of our nursing topic themes.
This article is part of Evidence Based Nursing (EBN) Perspectives. In this series, commentaries from the past 2 years from a specific nursing theme are brought together and highlights are discussed. The topic for this edition is advance care planning and palliative care. From October 2014 to the October 2016 edition, 12 commentaries were published on the chosen topic. Key themes are extrapolated from these commentaries, and the implications for practice and future research are explored. To read the full article, log in using your NHS OpenAthens details
Advance care planning (ACP) has been suggested to improve the quality of life (QoL) and mental wellbeing in severely ill patients and their relatives. To read the full article, log in using your MPFT NHS OpenAthens details.
UK policy and guidance state that people should have their preferences and priorities for end of life care recorded in the form of an advance care plan. However, for people with dementia and their families, issues of reduced capacity, difficulties with discussing end of life preferences and staff understanding can make this process challenges. This research focus summarises two studies that explore these issues. Login using your SSSFT NHS OpenAthens details for full text. SSOTP - You can request a copy of this article by replying to this email. Please ensure you are clear which article you requesting.
Despite universal recognition of the importance of Advance care planning (ACP) for people with dementia, who gradually lose their ability to make informed decisions themselves, ACP still only happens infrequently, and evidence-based recommendations on when and how to perform this complex process are lacking. We aimed to develop evidence-based clinical recommendations to guide professionals across settings in the practical application of ACP in dementia care.
Open Access Article
Advance care planning (ACP) is a process in which professionals, patients and their relatives discuss wishes and options for future care. ACP in the palliative phase reduces the chance that decisions have to be taken suddenly and can therefore improve the quality of life and death. The primary aim of this study is to explore how ACP takes place in cases of people with intellectual disabilities (ID).. To read the full article, log in using your NHS Athens details. To access full-text: click “Log in/Register” (top right hand side). Click ‘Institutional Login’ then select 'OpenAthens Federation', then ‘NHS England’. Enter your Athens details to view the article.
This article consider some clinical and population level approaches to advanced care of chronic conditions and end of life care. One approach aims to follow patient values and preferences about acceptable end of life (EOL) as elicited by questionnaires. The grounds for emphasising patients’ preferences and the adequacy of the questionnaires are examined. Other approaches involve additional aims such as meeting patient and family members needs, providing information, cost effectiveness and satisfying professionals' preferences for a certain type of EOL experience. Issues raised by adding these (and other) aims are examined. To read the full article, log in using your NHS OpenAthens details.
There is a lack of appropriate, validated person-centred outcome measures (PCOM) for paediatric palliative care in the scientific literature, and as a result there is not a tool to drive and evaluate care of children and young people. To read the full article, log in using your MPFT NHS OpenAthens details.
Commentary on:
Ramasamy Venkatasalu M, Whiting D, Cairnduff K. Life after the Liverpool Care Pathway (LCP): a qualitative study of critical care practitioners delivering end-of-life care. J Adv Nurs 2015;71:2108–18.
Implications for practice and research
Experienced practitioners can deliver high-quality end-of-life care without the Liverpool Care Pathway (LCP) but junior nursing and medical staff need clear guidance and support. Evidence-based guidance on family involvement is needed to avoid future controversies.
Research is needed into how managers and practitioners can address the organisational, professional and cultural factors that undermined the implementation of the LCP and are likely to hinder high-quality end-of-life care in the future. To read the full article, log in using your NHS Athens
The nature and quality of end-of-life care received by adults with intellectual disabilities in out-of-home, non-institutional community agency residences in Western nations is not well understood. Please contact the library to request a copy of this article - http://bit.ly/1Xyazai
the aim of this article is to help improve the support provided by community nurses to autistic individuals.
To read the full article, choose Open Athens “Institutional Login” and search for “Midlands Partnership”.
Samei Huda highlights a recent RCT of antipsychotics for delirium palliative care, which suggests we need non-drug alternatives for this group of patients.
End-of-life conversations are rarely initiated by care staff in long-term care facilities. A possible explanation is care staff’s lack of self-efficacy in such conversations. Research into the determinants of self-efficacy for nurses and care assistants in end-of-life communication is scarce and self-efficacy might differ between care staff of mental health facilities, nursing homes, and care homes. This study aimed to explore differences between care staff in mental health facilities, nursing homes, and care homes with regard to knowledge about palliative care, time pressure, and self-efficacy in end-of-life communication, as well as aiming to identify determinants of high self-efficacy in end-of-life communication. Open Access Article
This literature review aimed to answer the focus question: are district nurses well placed to provide equitable end of life care (EOL) for homeless individuals? It focused on 10 primary research studies, from which two themes emerged and subsequently formed the basis of the discussion... To read the full article, log in using your MPFT NHS OpenAthens details.
Religion should be included in the vital discussions about the care people and those close to them want to receive in the last two to three days of life, according to the National Institute for Health and Care Excellence (NICE).
Login using your SSSFT NHS OpenAthens details for full text. SSOTP - You can request a copy of this article by replying to this email. Please ensure you are clear which article you requesting.
Religion should be included in the vital discussions about the care people and those close to them want to receive in the last two to three days of life, according to the National Institute for Health and Care Excellence (NICE). Login using your SSSFT NHS OpenAthens details for full text. SSOTP - You can request a copy of this article by replying to this email. Please ensure you are clear which article you requesting.
Religion should be included in discussions about the care of people in the last two to three days of life, according to the National Institute for Health and Care Excellence (NICE). To read the full article, log in using your NHS OpenAthens details
Asking patients with palliative care needs about their end-of-life (EoL) preferences is widely acknowledged as an important aspect of EoL care. However, the issue of how to ask patients these questions has not been fully explored. Most prior studies in this area do not differentiate between patients' pragmatic preferences and ideal preferences, and between preferences concerning place of care (PoC) and place of death (PoD).
To read the full article, log in using your SSOTP NHS OpenAthens details. SSSFT - You can request a copy of this article by replying to this email. Please ensure you are clear which article you are requesting.
Asking patients with palliative care needs about their end-of-life (EoL) preferences is widely acknowledged as an important aspect of EoL care. However, the issue of how to ask patients these questions has not been fully explored. Most prior studies in this area do not differentiate between patients' pragmatic preferences and ideal preferences, and between preferences concerning place of care (PoC) and place of death (PoD). To read the full article, log in using your SSOTP NHS OpenAthens details. SSSFT - You can request a copy of this article by replying to this email. Please ensure you are clear which article you are requesting.
This paper examines the development and psychometric characteristics of three instruments about end of life, designed for use with adults with intellectual disability (ID). Respectively, the instruments assess understanding of the concept of death, end-of-life planning, and fear of death. Please contact the library to request a copy of this article - http://bit.ly/1Xyazai
The acute hospital palliative care team at London North West University Healthcare NHS Trust provides specialist palliative care advice and supports end-of-life care across the trust. We have experienced a year-on-year increase in demand for our services and have previously managed this by recruiting more clinical nurse specialists. The appointment of two assistant practitioners to support end-of-life care has allowed us to look at a different model of care and new ways of working to meet increasing demands on our service. To read the full article, log in using your MPFT NHS OpenAthens details
Open access. Response to letter re Advanced care planning. We thank Dr Waite for alerting readers to further useful guidance on advanced care planning. While we agree that there is much to be done from the 2009 Royal College of Physicians report, we have chosen to address the aspects of Mrs S's end-of-life care. In particular, we have focused on the synergies between the psychiatric staff and the local hospice.
The need for coordinated, seven-day end of life care in north Manchester was evident from the statistics. Deaths in hospital were higher than the national and regional average. In 40% of cases, there was no medical need for the patient to be in hospital in the first place, and research showed 73% of patients would prefer to die at home. To read the full article, log in using your NHS OpenAthens details
Healthcare professionals should not be reluctant to talk to patients about death and dying
A report by the Royal College of Physicians reveals that while open discussions are fundamental to managing care, giving patients choices and control over the rest of their lives, professionals continue to find them challenging. To read the full article, log in using your MPFT NHS OpenAthens details.
Anxiety adversely affects quality of life and is common in adults with advanced life-limiting disease. There are no UK-wide guidelines on the assessment and management of anxiety in this specific population and there is little evidence regarding drug treatments. This study aimed to explore how palliative care physicians assess and manage anxiety in their patients, and to identify barriers encountered.
Open Access Article
Observational pain tools (OPTs) are widely recommended in health care policies, clinical guidelines, and recommendations for pain assessment and management. However, it is unclear whether and how these tools are used for patients with advanced dementia approaching the end of life.. To read the full article, log in using your MPFT NHS OpenAthens details. SSOTP (legacy account) - You can request a copy of this article by replying to this email. Please ensure you are clear which article you are requesting.
The objective of this study was to develop a critical, evidence-based understanding of the experiences of people from Culturally and Linguistically Diverse (CALD) backgrounds, and their caregivers, in a palliative care setting.
Open Access Article
Family carers manage a wide range of responsibilities in the lives and care of patients receiving palliative care. They fulfil multiple roles and perform activities within different settings. This has immediate consequences on family carers’ every-day lives. According to literature, family carers in palliative care are both part of the formal and informal care network, but also persons in need of support. This article aims to investigate 1) burdens and rewards associated with family caregiving and 2) what family carers find helpful in their contact with professionals from integrated palliative care initiatives (IPC-i) and other services.
Open Access Article
Open access. Among all cancer patients in the palliative phase, ¾ have reached the age of 65. An aging population will increase the number of people afflicted with cancer, and create challenges for patients, family members and health services. Nevertheless, limited research has focused explicitly on the experiences and needs of older cancer patients in the palliative phase and their families. Therefore, the aim of this study is to explore what older home dwelling cancer patients in the palliative phase and their close family members, as individuals and as a family, experience as important and difficult when facing the health services.