The Department of Health have published a response to an independent review on choice in end of life care.
It details the six commitments that the government has made to the public to end variation in end of life care across the health system by 2020
The author reflects on the results of the National Survey off Bereaved People. Topics covered include the percentage of respondents who rated the overall quality of end-of-life care for their relative as outstanding, the lower percentage of respondents who evaluated hospital case as outstanding and the reasons for the stagnation in the survey results. Also mentioned is the commitment to promote high-quality care for adults at the end of their life. To read the full article, log in using your NHS OpenAthens details
Children’s hospices are a key provider of palliative care for children and young people with life-limiting and life-threatening conditions. However, despite recent policy attention to the provision of paediatric palliative care, little is known about the role of children’s hospice staff and the factors that may impact on their wellbeing at work. This study explored the rewards and challenges of working in a children’s hospice with an aim to identify staff support and development needs.
Open Access Article
Hospice at home (HAH) services aim to enable patients to be cared for and die in their place of choice, if that is at home, and to achieve a ‘good death’. There is a considerable range of HAH services operating in England. The published evidence focuses on evaluations of individual services which vary considerably, and there is a lack of consistency in terms of the outcome measures reported. The evidence, therefore, does not provide generalisable information, so the question ‘What are the features of hospice at home service models that work, for whom, and under what circumstances?’ remains unanswered. The study aims to answer this question.
Open Access Article
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.
Almost two thirds (65%) of nurses do not have sufficient time to provide high quality care for patients who are dying, an exclusive survey conducted jointly by Nursing Standard and Marie Curie has found.
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The aim of this review is to provide an overview of the users’ and providers’ perspectives on music therapy in palliative care within one research article.
Open Access Article
Dignity therapy is becoming established in adult settings, with research supporting its effectiveness. This article aims to summarise and synthesise the research that has explored dignity therapy and related meaning-making interventions in palliative care with young people. To read the full article, log in using your SSOTP (legacy account) NHS OpenAthens details. MPFT - You can request a copy of this article by replying to this email. Please ensure you are clear which article you are requesting.
Macmillan Cancer Support’s census shows:
The number of new cases per specialist cancer nurse is dramatically different across the country;
A greater proportion of specialist cancer nurses being paid in lower pay bands than in 2014;
Higher vacancy rates in specialist cancer nurse and cancer support worker roles than the UK average for health and social work
The proportion of specialist cancer nurses aged over 50 has increased;
Undergraduate nursing students encounter patients at the end of life during their clinical training. They need to confront dying and death under supportive circumstances in order to be prepared for similar situations in their future career.
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The nutritional needs of patients receiving palliative care should be routinely assessed, taking into account disease trajectory and nutrition-related symptoms. The social and emotional aspects of eating and drinking should also be acknowledged; as should the distress that weight loss and anorexia engenders in patients and their families. Practical strategies to optimise nutritional intake are discussed. Open and sensitive communication of patients’ needs and wishes is essential, especially when discussing complementary nutrition approaches. A holistic, multidisciplinary approach is key to meeting nutritional needs, and the goals of nutritional intervention should be regularly reviewed in the light of disease progression.
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Dementia is a chronic, progressive disease that is now much more widely recognised and treated. Patients with dementia may require palliative care when they reach the end stage of their illness, or they may have mild–moderate cognitive symptoms comorbid with a life-limiting illness. The variety of presentations necessitates a highly individual approach to care planning, and patients should be encouraged to set their own goals and contribute to advanced care planning where possible. Assessment and management of distressing symptoms at the end of life can be greatly helped by a detailed knowledge of the individuals’ prior wishes, interdisciplinary communication and recognition of changes in presentation that may result from new symptoms, for example, onset of pain, nutritional deficits and infection.. To read the full article, log in using your NHS OpenAthens details.
The materials are a response to a survey by Age UK and the Malnutrition Task Force that shows conversations about death are taboo for many people.
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Timely identifying people with intellectual disabilities in need of palliative care is important. Therefore, we developed PALLI: a screening tool for deteriorating health, indicative of a limited life expectancy. Here, we aimed to describe development of PALLI and to explore its applicability.. To read the full article, log in using your NHS OpenAthens details.
Gail Wilson has been instrumental in pioneering a compassionate communities initiative that uses local networks of informal carers to enable people to die in their own homes, if that is where they want to be. The initiative involves formal services working with the informal networks to deliver care to suitable patients. After a pilot in Cornwall it will be introduced in Devon. To read the full article, log in using your MPFT NHS OpenAthens details.
The service was created as a partnership between the palliative care team and older people’s mental health services, to make sure appropriate support is provided. It’s the only one of its kind in the North West.
Opioid and sedative use are common ‘active’ practices in the provision of mainstream palliative care services, and are typically distinguished from euthanasia on the basis that they do not shorten survival time. Even supposing that they did, it is often argued that they are justified and distinguished from euthanasia via appeal to Aquinas’ Doctrine of Double Effect. In this essay, I will appraise the empirical evidence regarding opioid/sedative use and survival time, and argue for a position of agnosticism. I will then argue that the Doctrine of Double Effect is a useful ethical tool but is ultimately not a sound ethical principle, and even if it were, it is unclear whether palliative opioid/sedative use satisfy its four criteria. Although this essay does not establish any definitive proofs, it aims to provide reasons to doubt—and therefore weaken—the often-claimed ethical distinction between euthanasia and palliative opioid/sedative use. . To read the full article, log in using your NHS OpenAthens details.
What nurses in their thousands told our third annual Nursing Standard-Marie Curie poll on end of life care provision
Almost two thirds (65%) of nurses say staffing shortages are the main barrier to providing good care to dying patients, an exclusive survey by Nursing Standard and Marie Curie reveals. To read the full article, log in using your MPFT NHS OpenAthens details.
Young people who have learning disabilities commonly have many complex and severe life-limiting conditions that result in premature death. Too often neither they nor their family and friends are prepared for end of life situations. End of life care planning is helpful in eliciting and honouring the young person’s wishes, as far as possible. However, it can be challenging due to communication difficulties and limited understanding of the meaning of death and dying. To read the full article, log in using your MPFT NHS OpenAthens details.
The growing UK population together with demographic changes is challenging health and social care services. Health services are being reconfigured in response to this, drawing on the NHS Five Year Forward View to meet the increased demand. The 3-year review of progress outlined progress towards the intended transformations to manage growing demand while also recognising the constraints of financial sustainability. ... Importantly, planning is needed to ensure that the growing need for palliative care can be met. To read the full article, log in using your MPFT NHS OpenAthens details.
Around 80% of hospital patients will have swallowing difficulties in the last 72 hours of life, so the trust that runs Shropshire’s two acute hospitals has introduced an alternative to nil by mouth which improves both patient experience, and allows loved ones to be involved in their care.
‘Taste for Pleasure’ means that when receiving end of life mouth care (cleaning and hydrating the mouth), hospital staff at The Shrewsbury and Telford Hospital NHS Trust (SaTH), which runs the Royal Shrewsbury Hospital (RSH) and the Princess Royal Hospital in Telford (PRH), can use the patient’s favourite flavours to provide moisture. These flavours can be anything from blackcurrant squash to tea, all the way up to whiskey!
Half of nursing home residents (NHR) suffer from dementia. End-of-life hospitalizations are often burdensome in residents with dementia. A systematic review was conducted to study the occurrence of hospitalizations at the end of life in NHR with dementia and to compare these figures to NHR without dementia. Open Access Article
Allied health professionals aspire to become evidence-based practitioners but disparity exists between best practice and clinical practice. One example is outcome measurement; despite being committed to using outcome measures, allied health professionals struggle to use them. This study aimed to explore the process of introducing outcome measures into a practice setting. To read the full article, log in using your MPFT NHS OpenAthens details
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.
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.
Nurses and certified nursing assistants (CNA) have a crucial role in 24/7 continuity of palliative care for many vulnerable patients and families, however, their perspective has been largely omitted in reported barriers to palliative care. To read the full article, log in using your MPFT NHS OpenAthens details.
Dystonia is a challenging neurological symptom found in paediatric palliative care (PPC).1 While well defined as a movement disorder characterised by sustained or intermittent muscle contractions associated with abnormal movement and posturing, dystonia is less well recognised and identified by clinicians.2 A wide range of therapies exist but consensus is often lacking regarding choice of treatment. No studies to date have analysed differences in management of dystonia between palliative care and neurology services.. To read the full article, log in using your NHS OpenAthens details.
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Advance care planning (ACP) is the process of discussing and documenting wishes and preferences for future care. Research about ACP for people with intellectual disabilities (ID) is limited. This study describes what is important for ACP in the palliative phase of people with intellectual disabilities.. 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.
The objective of this study was to explore nurses' perceptions of end-of-life care following the withdrawal of the Liverpool Care Pathway (LCP). To read the full article, log in using your MPFT NHS OpenAthens details.
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”.
Free access. On reflection- If you ask people how they hope to die, you will usually hear two kinds of answers. Some people want to go very quickly, for example, through a sudden massive stroke, preferably in their sleep. Others would rather have a couple of years to come to terms with the prospect of death: a gradual decline from cancer, perhaps, with time to fulfil their last cherished wishes, put their affairs in order and gather their family around them for the end. I would have given the second of these answers myself in the past,......
To describe and explain the process of transition from cure‐focused to comfort‐focused healthcare as perceived and reported by patients, family members and healthcare providers.. 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.
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.
Objective: The aim of this paper was to assess the effects on cancer patient symptom distress of an eHealth system that alerts clinicians to significant changes in the patient’s symptoms, as reported by a family caregiver.
The profiles provide a snapshot overview of end of life care at various geographies. They are intended to help local government and health services to improve care at the end of life.
Complex need for patients with a terminal illness distinguishes those who would benefit from specialist palliative care from those who could be cared for by non-specialists. However, the nature of this complexity is not well defined or understood. This study describes how health professionals, from three distinct settings in the United Kingdom, understand complex need in palliative care.
Open Access Article
The focus of this project is on improving the provision of primary palliative care (PC) by general practitioners (GPs). While approximately 10–15% of the incurable, seriously ill or dying people will be in need of specialist PC, the vast majority can be adequately treated within generalist care. The strengthening of the GP’s role in PC, as well as ensuring close collaboration between specialist PC services and GPs have been identified as top priorities for the improvement of PC in Germany. Despite healthcare policy actions, diverse obstacles still exist to successful implementation of primary PC on a structural, process, and economic level. Therefore, this project aims at addressing barriers and facilitators to primary PC delivery in general practice in Germany.
Open Access Article
liative care in the UK has been ranked as the best in the world. So where did palliative care go so wrong that a 168-page document is required to inform staff how to care for dying patients if it has been going so well for so long? Those nearing the end of their life deserve to be given optimum care, attention, compassion and consideration, but this is not always the case.
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Open access. The aim of this study was to explore first-line nurse managers’ perceptions of the challenges involved in decision-making concerning older patients who wish to die.
The aim of palliative care is to improve the quality of life of patients and families through the prevention and relief of suffering. Frequently, patients may choose to receive palliative care in the home. The objective of this paper is to summarize the quality and primary outcomes measured within the palliative care in the home literature. This will synthesize the current state of the literature and inform future work.
Open Access Article
People with schizophrenia are at risk of receiving poorer end of life care than other patients. They are often undertreated, avoid treatment and are about half as likely to access palliative care. There are limited options for end of life care for this under-serviced group in need. This study aims to address the paucity of research by documenting possible need, experiences of health care service use and factors affecting palliative care use for people with schizophrenia who have advanced life limiting illness.
Open Access Article
People with learning disabilities are often marginalised in healthcare, including in hospice settings, and as a result may not receive effective end of life care. Research in hospice settings has identified that many staff lack confidence, skills and knowledge in caring for people with learning disabilities, which can have a negative effect on the care these individuals receive. To address these issues, the author has proposed a service improvement initiative, which she developed as part of her learning disability nursing degree programme. This proposed initiative aimed to enhance end of life care for people with learning disabilities through the implementation of a community learning disability link nurse in the hospice setting.
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To identify effective treatments and risk factors associated with death rattle in adults at the end of life.. 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.
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).
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A new approach to end of life care is bringing more personalised support to dying patients at a large acute trust.
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