Individuals with an intellectual disability are vulnerable to having end-of-life decisions made for them merely due to the presence of a disability. As a result, decisions made by others may not reflect the exact wishes of the individual. Please contact the library to request a copy of this article - http://bit.ly/1Xyazai
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.
Discover how Leeds Teaching Hospitals provided a tailored approach to training, in the final of a suite of case studies focused on enhancing end-of-life care.
In addition to trust-wide training opportunities, the palliative care and end-of-life care specialists offered bespoke departmental teaching and focused interventions to improve care within specific clinical areas.
Despite informal caregivers' integral role in supporting people affected by disease or disability, economic evaluations often ignore the costs and benefits experienced by this group, especially in the palliative setting. The purpose of this systematic review is to identify preference-based instruments for measuring care-related outcomes and provide guidance on the selection of instrument in palliative care economic evaluations. Open Access Article
Lwing at HM Prison Norwich is not a conventional setting for healthcare. It is home to 15 prisoners with extra and palliative care needs, including dementia and cancer. 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.
A team from HM Prison Norwich has received the Gold Standards Framework Quality Hallmark Award – the first national recognition of care provided to prisoners in the final months of their lives. To read the full article, log in using your NHS OpenAthens details
Learning from existing good practice examples, listening to the experiences of our staff, and feedback from our patients and families, led to production of a draft ‘same day discharge home to die pathway’. Widespread consultation was undertaken with staff across the trust.
“We recognised that there were many good examples of rapid discharges home, but this was not always consistent, particularly where same day discharges to die at home had been identified, and where prevention of delay is paramount”.
When adults with cancer, chronic obstructive pulmonary disease or heart failure at the end-stage of life received specialized home-based end-of-life care (multidisciplinary care, including specialist palliative-care nurses, family physicians, palliative-care consultants, physiotherapists, occupational therapists, nutritionists, and social care workers) more died at home compared with usual care (on average 591 versus 444 died at home per 1000 people). Usual care varied considerably across studies; two trials used home care but this was not specialized end-of-life care. Moderate-quality evidence detected no differences between groups in terms of admission to hospital during 6 to 24-months follow-up or the number of inpatient days in two years.
Families with dying children must be put at the heart of care, new guidance from NICE (The National Institute for Health and Care Excellence) says.
We advise people working in health and social care to make sure mothers and fathers, brothers and sisters, get the practical and emotional support they need to care for a family member at the end of life.
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.
Sadly, however, palliative and end of life care can be harder to access for those who come from black and minority ethnic communities and deprived areas; those who are homeless; those held in secure and detained settings; those who have learning disabilities; those suffering with dementia or with long term conditions. And the quality of care they receive can be poorer.
Delivering excellent end of life care is among the biggest challenges faced by nurses today, regardless of their level of experience or place of work. Just about every nurse will be confronted with a dying patient at some stage, so it is essential they have the training and resources to cope. To read the full article, log in using your NHS OpenAthens details
Neurodegenerative diseases progress slowly, creating increasing physical disability with unpredictable disease trajectories. The disease’s life-threatening nature often places these patients in palliative care. There are several factors that complicate the care of patients with neurodegenerative diseases in palliative care units. To read the full article, log in using your NHS OpenAthens details
Most staff working in intellectual disability services will be confronted with people with intellectual disabilities who need support around death, dying and bereavement. Previous studies suggest that intellectual disability staff tend to protect clients from knowing about death and avoid communication about death. The aims of this study were to gain further insight into the individual, organisational and contextual factors that affect the communication of death-related bad news to people with intellectual disabilities by intellectual disability staff and to develop guidelines for services to enable appropriate communication with clients about death and 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.
Shrewsbury and Telford Hospital NHS Trust Staff have been working hard to have a clear process for when an End of Life Care Patient wishes to get married in Hospital.