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.
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.