Palliative care advocates a holistic, multiprofessional approach to the care of people with life-threatening disease. In addition to the control of physical symptoms attention should also be paid to psychosocial, cultural and spiritual aspects of the patient's experience of illness. Guidance documents and research evidence reflect the complexity of the patient's journey and the need to regularly assess these areas of need over time. Cultural background can shape how patients respond to life-threatening illness, as can the beliefs held by the patients, whether religious or more broadly spiritual. Research evidence shows the importance of identifying and addressing cultural and spiritual aspects of care held by patients, families and staff. These are often neglected in clinical practice due to the focus on biomedical concerns and staff discomfort in engaging with beliefs and culture. Recent studies have highlighted gaps in the research, and some methodological difficulties and indicate many patients welcome healthcare staff enquiring about the importance of their beliefs and culture. Identifying research priorities is necessary to guide future research and strengthen the evidence base. To read the full article, log in using your NHS OpenAthens details
More than a third (34 per cent) of Health and Wellbeing Boards (HWBs) do not consider the needs of dying people in their assessments of the health and care needs of their local populations, according to a new report which highlights that end of life care is being overlooked by many health and care leaders in England.
The report, published today by the charity Hospice UK, also shows that well over half (57 per cent) of HWBs do not include the needs of dying adults and children in their key strategies that inform local service planning, with no change since 2014.
This integrated checklist from the London End of Life Care Clinical Network is a resource for commissioners to review their existing services and to use those parts that are most relevant or needed locally.
Rationale and key points:
This article provides nurses with information about how to care for a patient after death, and support their family and loved ones in the community setting.
1) Care after death involves supporting the family and significant others, and providing personal care to the patient.
2) It is important to ensure privacy, dignity and respect of the deceased and to recognise this is a sensitive and difficult time for families.
3) Staff undertaking care after death should be offered support.
4) Local and national guidelines should be followed. To read the full article, log in using your NHS OpenAthens details
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.
Adult social care to be assessed on end-of-life care after a CQC review finds inequality in the care different groups of people receive in their final days
Practicing healthcare professionals and graduates exiting training programs are often ill-equipped to facilitate important discussions about end-of-life care with patients and their families. We conducted a systematic review to evaluate the effectiveness of educational interventions aimed at providing healthcare professionals with training in end-of-life communication skills, compared to usual curriculum.
Increasing evidence demonstrates the benefits of early end-of-life care discussions with patients with life-threatening illness and their families. However, these conversations often do not occur. This review explores some of the many barriers faced by clinicians in relation to end-of-life care discussions, including prognostic uncertainty, fear of causing distress, navigating patient readiness and feeling unprepared for these conversations. The value of core clinical communication skills, potential strategies for improvement and areas for future research are also discussed. To read the full article, log in using your NHS OpenAthens details
VARIATION IN the quality of care provision has been found following the first national audit of end of life care in hospitals since the withdrawal of the controversial Liverpool Care Pathway (LCP). Login using your SSSFT NHS OpenAthens details for full text. SSOTP - request a copy of the article from the library http://bit.ly/1Xyazai
LAST DECEMBER the National Institute for Health and Care Excellence (2015) published a guideline recommending that patients approaching the end of life should receive individualised care. Login using your SSSFT NHS OpenAthens details for full text. SSOTP - request a copy of the article from the library http://bit.ly/1Xyazai
Commentary on:
Gott M, Allen R, Moeke-Maxwell T, et al. ‘No matter what the cost’: a qualitative study of the financial costs faced by family and whānau caregivers within a palliative care context. Palliative Med 2015;29:518–528.
Implications for practice and research
Healthcare providers should consider the range and significance of unsubsidised costs incurred by family caregivers of patients with palliative care needs.
Future research needs to describe the extent and variation of costs borne by family caregivers of palliative care patients. To read the full article, log in using your NHS OpenAthens details
Music therapy during palliative and end-of-life care is well established and positive benefits for patients have been reported.
Aim: Assess the effectiveness of music therapy versus standard care alone or standard care in combination with other therapies for improving psychological, physiological and social outcomes among adult patients in any palliative care setting.
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The first major examination of end of life hospital care since the Liverpool Care Pathway was abandoned found inconsistent quality of care in the NHS. To read the full article, log in using your NHS OpenAthens details
To explore patients' and family caregivers' experiences and perceptions of Hospice at Home care. Login using your SSSFT NHS OpenAthens for full text. SSOTP - request a copy of the article from the library - http://bit.ly/1Xyazai
older people aged 80 and over are increasingly providing end-of-life care to spouses at home and often do so for long periods of time, while also trying to manage their own illnesses and disabilities. Little of the research on older spousal carers has focussed on the oldest carers; hence, the needs of this particular population are not fully known. Please contact the library to receive a copy of this article - http://bit.ly/1Xyazai
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.
In recent years, a number of shortcomings in the NHS have been identified in end-of-life care delivered in hospital for people with long-term conditions other than terminal cancer. This article gives an overview of the findings of a Dignity in Care travel scholarship, which was undertaken to establish whether an American shared informed decision aid, specifically designed to initiate therapeutic conversations for this patient group, might reasonably be adopted in an NHS setting. One tool specifically for this purpose was in use in the USA at the time, and its efficacy formed part of a broader research study being carried out at Dartmouth Hitchcock Medical Center (DHMC) in New England. Concurrently in the UK, The Health Foundation supported a 3-year study that focused exclusively on the development of a range of 'option grids' for clinical interventions and did not include an end-of-life model. To read the full article, log in using your NHS OpenAthens details
There is a paucity of cross-national population-based research on hospitalisations of people at the end of life. We aimed to compare, in four European countries, the frequency, time, length of and factors associated with hospitalisations in the last 3 months of life. To read the full article, log in using your NHS OpenAthens details
Nigel Hawkes finds out how the nominees for the palliative care award are working to improve care and keep people out of hospital. To read the full article, log in using your NHS OpenAthens details
This update follows a joint statement issued in September 2014 when NHS England and PHE announced their plans to work together to test the feasibility of developing a national palliative care clinical dataset. The feasibility work involved a number of pilot sites trialling the dataset and feedback from these sites indicate that the dataset has been beneficial in a number of ways. A full evaluation is now underway and will be published in the summer, alongside the dataset which will be available for local use on a voluntary basis.
The first partnership between charity Marie Curie and a Welsh health board is set to bolster end of life care for people in south Wales. To read the full article, log in using your NHS OpenAthens details
Greenwich & Bexley Community Hospice are working with the Oxleas Advanced Dementia Service to improve care for people with advanced dementia. Supported by a grant from the St James Place Foundation, we have seconded a Palliative Care Clinical Nurse Specialist to a new 2 1/2 day a week role specifically supporting people with advanced dementia.
Last month, the British Medical Association (BMA) published its final report into end of life care in the UK. This great film summarizes the issues of talking about dying.
The new one-year Spotlight project, which builds on the foundations of the previous three-year Clinical Priorities programme, will identify best practice in end of life care pathways and aims to work with other professional bodies to ensure this best practice is widely disseminated. The project will also be offering learning and sharing experience to GPs and their practice staff. In 2016 the RCGP will also plans to publish an end of life care position statement which will be tailored to the specific healthcare system in each of the four nations of the UK.
A rapid response service for patients at the end of life has experienced higher than expected demand in its first months.To read the full article, log in using your NHS OpenAthens details
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
Every palliative care formulary contains equivalence charts for commonly used opioids such as morphine, oxycodone, buprenorphine, and fentanyl, the bedrock of pain control in cancer. Two new studies examined how dosing is applied in clinical practice. To read the full article, log in using your NHS OpenAthens details
The BMA launched a major project in November 2014 to examine both the public and medical professionals' attitudes on aspects of end-of-life care and physician-assisted dying.
We wanted to explore:
how the reality, and perceptions, of end of life care compare to models of good practice;
the challenges of providing good care at the end of life; and
the possible impact on the doctor-patient relationship if physician-assisted dying were to be legalised.
An article highlighting challenges and opportunities for researchers working in the area of palliative and end of life care has published in BMJ Supportive & Palliative Care, this week.
The commentary piece, by NIHR Senior Investigator Professor Irene Higginson, talks about the importance of the roles of research organisations like the NIHR, in funding leading-edge, needs-led research to improve palliative and end of life care across all disease areas.
Palliative care advocates a holistic, multiprofessional approach to the care of people with life-threatening disease. In addition to the control of physical symptoms attention should also be paid to psychosocial, cultural and spiritual aspects of the patient's experience of illness. Guidance documents and research evidence reflect the complexity of the patient's journey and the need to regularly assess these areas of need over time. Cultural background can shape how patients respond to life-threatening illness, as can the beliefs held by the patients, whether religious or more broadly spiritual. Research evidence shows the importance of identifying and addressing cultural and spiritual aspects of care held by patients, families and staff. These are often neglected in clinical practice due to the focus on biomedical concerns and staff discomfort in engaging with beliefs and culture. Recent studies have highlighted gaps in the research, and some methodological difficulties and indicate many patients welcome healthcare staff enquiring about the importance of their beliefs and culture. Identifying research priorities is necessary to guide future research and strengthen the evidence base. To read the full article, log in using your NHS OpenAthens details
The government must ensure dying people have access to 24/7 community nursing, according to the End of Life Care Coalition. To read the full article, log in using your NHS Athens
PEOPLE WHO have dementia do not receive appropriate end of life care and sufficient pain relief, a conference heard. Login using your SSSFT NHS Athens for full text. SSOTP - request a copy of the article from the library http://www.sssft.nhs.uk/library
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).
Poor communication in the NHS has a profound impact on patient care, staff burnout and public funds, a new report published by Marie Curie today warns1.
The report’s author, Andrew McDonald, formerly a top civil servant, argues that inadequacies in communication are damaging medical care and wasting much-needed NHS resources. The total cost, in England alone, is likely to be far in excess of £1 billion a year.
In attempting to protect people with learning disabilities, staff can prevent them from making informed decisions. A LEADING nurse has said that many people with learning disabilities die a ‘disenfanchised death’ because the staff caring for them want to protect them from the reality of their impending demise. Login using your SSSFT NHS Athens for full text. SSOTP - request a copy of the article from the library http://www.sssft.nhs.uk/library
Objective Improving quality of life (QOL) is the central focus of palliative care support for children with life-limiting illness (LLI), but achieving this can be challenging.
Intervention MyQuality is an online tool that enables families to choose and monitor parameters they identify as having an impact on their QOL, which aims to improve patient–professional communications and also to enhance patient empowerment within healthcare dialogues.
Background: Most studies on euthanasia fail to explain the intentions of health professionals when faced with performing euthanasia and are atheoretical. To read the full article, log in using your NHS Athens
Public Health England (PHE) and the Housing Learning & Improvement Network (Housing LIN) have published two practical resources aimed at improving services around housing and end of life care and on the built environment's role in promoting active ageing. The free documents are intended to build on a major undertaking by PHE, NHS England and its partners to improve integration and partnership working between health, social care and housing.
Two £25 vouchers are up for grabs in the library’s ‘Making the Most of Information’ survey.
To take part, just visit http://goo.gl/AdN4ok by Friday 19th February.
A bill aimed at improving patient choice in end of life care has passed two more stages in parliament and moved closer to becoming law. To read the full article, log in using your NHS Athens
Open access. End-of-life care has been given increasing importance within healthcare settings. In June 2014, the Leadership Alliance for the Care of Dying People published One Chance to Get it Right. This nationally accepted guidance replaces previous end-of-life care pathways such as the Liverpool Care Pathway and outlines how dying patients should be managed irrespective of setting. Increasingly, patients with mental health problems are entering their final days of life within psychiatric in-patient or acute hospital settings, and psychiatrists need to be aware of the new guidance and ready to implement it within psychiatric practice.
Dementia is a life-limiting condition that is largely a disease of ageing. However, older people in general, and older people with dementia in particular, have not always had equal access to effective palliative and end of life care. As a result, people with dementia at the end of life often receive aggressive and burdensome interventions, or inadequate assessment and management of their symptoms. Patterns in how people with dementia experience and present symptoms as they near the end of life can indicate when the goals of care should change and a palliative approach should be adopted. To read the full article, log in using your NHS Athens
Starting the conversation about spiritual needs and being with a person in spiritual distress can be difficult for staff and volunteers. Expressing spiritual distress is a challenge for patients and their loved ones, as knowing where to begin and how to put feelings into words can feel impossible.
The St Barnabas Hospice Spiritual Wellbeing Boxes have been developed to make vital interaction between patients, their loved ones, our staff and volunteers a little easier.
This resource aims to help frontline professionals and providers working in community settings and commissioners maintain a holistic approach to the people dying, caring or bereaved.
It provides information to help ensure that commissioning and delivery of services and practice takes account of spiritual needs of the largest 6 faith groups in England and remains appropriate to the community setting in which they work.
The palliative care needs of people with learning disabilities are not always recognised, resulting in many having no choice about their death, a conference has heard. To read the full article, log in using your NHS Athens
The film tells the story of Molly, her daughter and the care package around Molly that allowed her to remain at home and die peacefully. It’s a great story of what happens when the system works well and families talk in advance about a loved one’s wishes.
Over 12 minutes Molly’s increasing frailty is set out, how the family prepared for her death and what happened at the end. The most moving section of the film starts at 8’22”
Editorial. Library Services do not currently have access to this journal, but you can request a copy of the article online and we will try to get a copy to you: http://bit.ly/1Xyazai
Physicians are increasingly confronted with people with intellectual disabilities (ID) who are facing life-threatening diseases. We aimed to explore when and based on which information sources and signals physicians recognised that a patient with ID would die in the foreseeable future. Insights may help in identifying patients in need of palliative care. Login using your SSSFT NHS OpenAthens for full text. SSOTP - request a copy of the article from the library - www.sssft.nhs.uk/library
Commentary on:
Rosenwax L, Spilsbury K, Arendts G, et al. Community-based palliative care is associated with reduced emergency department use by people with dementia in their last year of life: a retrospective cohort study. Palliat Med 2015;29:727–36.
Implications for practice and research
We need to better understand how community palliative care should be organised and delivered to optimise well-being for the dementia population.
Research is needed to explore and explain the nature of the relationship between community palliative care and emergency department (ED) use.
More work is needed to examine which palliative care principles are most effective in reducing ED visits. To read the full article, log in using your NHS Athens
Commentary on:
Tomlinson E, Stott J. Assisted dying in dementia: a systematic review of the international literature on the attitudes of health professionals, patients, carers and the public, and the factors associated with these. Int J Geriatr Psychiatry 2015;30:10–20.
Implications for practice and research
Different levels of advocating for assisted dying between people with dementia and health professionals may mean professionals need more confidence, support and awareness to have these conversations.
Further qualitative research is needed to explore in more detail the views carers and people with dementia have about assisted dying. To read the full article, log in using your NHS Athens
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 World Health Organization (WHO) has defined palliative care as an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.1 Globally, it is estimated that every year over 20 million people will require palliative care at the end of life. Of these 69% are adults over 60 years. These older population, who make up the vast majority of residents within care home settings, are more … To read the full article, log in using your NHS Athens
The World Health Organization (WHO) has defined palliative care as an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.1 Globally, it is estimated that every year over 20 million people will require palliative care at the end of life. Of these 69% are adults over 60 years. These older population, who make up the vast majority of residents within care home settings, are more … To read the full article, log in using your NHS Athens
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