In palliative care, administration of opioids is often indispensable for pain treatment. Pain assessment may help recognize pain and guide treatment in non-communicative patients. In the Netherlands the Rotterdam Elderly Pain Observation Scale (REPOS) is recommended to this aim, but not yet validated. Therefore the objective of this study was to validate the REPOS in non-communicative or unconscious end-of-life patients.
Open Access Article
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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.
To identify instruments that could assess the quality of dying and death and their psychometric properties. To assess the methodological quality of studies on measurement properties.. 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.
Despite UK national guidance on care after death, it is clear that the bereaved family can experience distress while waiting for the patient's death to be verified. This distress can escalate if there is a delay in verification....It is hoped that this guidance will help to avoid delays that may cause additional distress to grieving families. This article sets out the rationale for the guidance, as well as discussing outstanding concerns and proposals for future considerations
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Letters. Murray and colleagues discuss early introduction of palliative care. This remains uncommon for metastatic cancer, unless poor physical performance contraindicates drug treatment. As the authors state, evidence shows that early palliative care—or best supportive care, my preferred term—benefits both quality and quantity of life, even if used alone in metastatic cancer. To read the full article, log in using your NHS OpenAthens details
Editorial. Palliative sedation is a term used to describe the use of sedative drugs in dying patients to induce a state of decreased or absent awareness (unconsciousness) in order to relieve intolerable suffering from refractory symptoms.1 ,2 Perhaps, for many of us, this conjures up an image of an agitated patient who is rendered unconscious in the last hours of life as a result of the need for repeated doses of sedative drugs.
However, in the literature, ‘palliative sedation’ is used more broadly, sometimes as an umbrella term for all levels and patterns of sedation in those close to death.3 ,4 For example, a systematic review about palliative sedation includes a report of sedatives prescribed to 68/102 patients at some point in the last week of life,5 for whom ‘sublingual lorazepam tablets and clonazepam drops were commonly used and efficacious’. (This is the source of the figure quoted elsewhere that up to 67% of dying patients may need palliative sedation.) To read the full article, log in using your NHS OpenAthens details
We’ve just heard that SSOTP will not be renewing their agreement with SSSFT LKS for library services for this financial year. Because of this we will be reviewing our Be Aware bulletins. Sadly we won’t be accepting any new sign-ups from SSOTP staff and will be withdrawing some of the physical healthcare bulletins that we…
Implications for practice and research:
1) Patient-related challenges in pain management were universal across settings, indicating a need for education and practice development at all care settings.
2) Nurse-related and organisational factors influencing pain management vary across different care settings, implying a need for different approaches to improve nurse–physician relations and learning opportunities.
3) Patient-related challenges imply a need for research on administration of medications among persons with dementia to ensure pain relief in end stage.
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The Auditing Care at the End of Life (ACE) instrument contains 27 questions captured across 6 domains, which are indicative of quality end-of-life care for nursing home residents.
Open Access Article
This is an excellent, fascinating and highly accessible read on spirituality in hospice care for professionals in health and social care and the wider public. It presents rich and creative narratives on spiritual interactions with patients and families from a diverse range of experienced hospice healthcare professionals and volunteers.
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. To read a copy of the book in this review, please contact the library
Marie Curie publishes emergency admissions briefing
The charity argues that emergency admissions in the final year of life can often be avoided with adequate care in the community is provided
We say we need to boost NHS community services so there are enough beds and staff to ensure good end of life care.
The aim of this article is to report on a supplementary analysis exploring the experiences and questions of PeolcPSP survey respondents regarding symptoms, hydration and nutrition. Open Access Article
In the run up to Dying Matters Awareness Week 2018, Staffordshire’s Health and Wellbeing Board, alongside Together We're Better, have launched a campaign to encourage people to speak openly and honestly about death and dying and ensure their final wishes are known.
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.
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.
This study explored the lived experiences of clinical nurse specialists who can prescribe independently in their role of providing support to patients with palliative care needs within the community. Part 1 of this study examined how the study was carried out; this second part explores the findings. The nurses reported that being able to prescribe enabled them to provide seamless, holistic care, which gave patients faster access to medicines, especially at weekends when their GP was unavailable.
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understanding how best to provide palliative care for frail older people with non-malignant conditions is an international priority. We aimed to develop a community-based episodic model of short-term integrated palliative and supportive care (SIPS) based on the views of service users and other key stakeholders in the United Kingdom. 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.
The Cancer Vanguard will develop programmes to raise public awareness and work collaboratively with partners in education, health and social care to shift the focus towards prevention and early diagnosis, to provide a recovery package to aid those living with and beyond cancer and to greatly improve care at the end of life.
When receiving palliative care, patients and their families experience altered life situations in which they must negotiate challenges in daily life, increased care and new roles. With limited time, they also experience emotional changes that relate to their uncertain future. Transitions experienced in such situations are often studied by focusing on individual aspects, which are synthesized in the following study. The aim was to conduct a qualitative meta-synthesis to explore the experiences patients and their families gain during transitions in palliative care circumstances.
Open Access Article
the need for palliative and end of life care for the oldest old is growing rapidly. Family carers often report they do not feel well supported; for better practice and policy, we need better understanding of their experiences and how to support them.. To read the full article, log in using your MPFT NHS OpenAthens details.
Carers of patients with palliative care needs require careful assessment and support to undertake their role effectively. The carer component of palliative care is embedded in complex situations that necessarily focus on the patient. To read the full article, log in using your MPFT NHS OpenAthens details.
This report begins to highlight and challenge professional reluctance to engage in conversations with patients about uncertainty, treatment ceilings, resuscitation status and death. It offers some ‘mythbusters’ to get physicians thinking and signposts to tools and educational resources to support physicians and other healthcare professionals.
Conversations about end of life choices can be difficult. However, a Staffordshire GP wants us to have these conversations to make sure we are all prepared for when someone dies.
As part of Dying Matters Week (13-19 May 2019), the NHS in Staffordshire is encouraging people to plan ahead and start a conversation with family members. By planning in advance, less pressure will be placed on loved ones at the end of someone’s life.
To explore current practice and the role taken by UK memory services in helping carers of people with dementia prepare for the end of life.. To read the full article, log in using your MPFT NHS OpenAthens details.
NHS England will increase funding for children’s hospices to as much as £25 million a year, chief executive Simon Stevens announced today.
Medical advances mean the NHS can help seriously ill children and young people with more complex health issues live longer, more fulfilling lives.
For the year 2018, the French government plans a revision of bioethics laws, including certainly the recent Claeys-Leonetti law introducing the right to deep and continuous sedation at the request of palliative patients and prohibiting euthanasia for end-of-life patients. Because there is no published data on medical staff opposition to a deep and continuous palliative sedation request under Claeys-Leonetti law, we believe this report may give insight into physicians’ decision making, into the role of criteria for prudent practice, and thus contribute to the bioethical debate. Open Access Article
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
In this overview we discuss the palliative psychiatric care of older people towards the end of life. We briefly consider ethics, dementia care, delirium, depression, anxiety, grief and physician-assisted suicide. We also discuss hope, dignity, spirituality and existentialism. We hope that this article will encourage clinicians to reflect on the effects of terminal illnesses on the mental health of dying people and the current provision of palliative psychiatric care. . To read the full article, log in using your MPFT NHS OpenAthens details.
Background:
Acute hospitals provide a high proportion of end-of-life care but some families experience poor communication with clinical staff.
Aim:
To evaluate the use of the Family's Voice diary communication tool across nine healthcare settings. To read the full article, log in using your MPFT NHS OpenAthens details.
Recently, there has been dialogue on improving the provision of palliative care in the post-Liverpool care pathway era. Current literature includes recommendations for new ways of thinking that can reshape and align palliative care services with the principles of public health ... To read the full article, log in using your MPFT NHS OpenAthens details.
Although Alzheimer disease and other dementias are life limiting, only a minority of these patients or their proxy decision makers participate in advance care planning. We describe end‐of‐life care preferences and acute care and hospice use in the last 6 months of life for persons enrolled in a comprehensive dementia care management program.. 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.
Caring and supporting patients at the end of their lives comes with numerous challenges for healthcare professionals. One of the main challenges is how to communicate effectively with patients and those important to them. To read the full article, log in using your MPFT NHS OpenAthens details.
Activity participation may support clients in palliative care to maintain dignity and quality of life. Literature and policy documents state that occupational therapists should be part of the team in palliative care but provide limited guidance on how interventions should be employed. Thus, the aim was to describe occupational therapists’ experiences of enabling activity for seriously ill and dying clients. Open Access Article
GP surgeries will now be able to display a 'daffodil mark' as a sign of commitment to improving end of life care, as part of a new partnership between the Royal College of GPs and the terminal illness charity Marie Curie.
The mark, synonymous with the charity, is based on a new set of criteria called the Daffodil Standards – a set of eight quality improvement statements designed to support primary care teams in delivering care to patients living with an advanced, serious illness or at the end of their lives, and their loved ones.
Many people do not discuss end of life preferences with those closest to them, although this can be beneficial to the individual and wider population. This study evaluated a community intervention to promote end of life preparation and discussion among people who are currently well. Open Access Article
Free access. To evaluate the time course of “taking to bed” at the end of life and determine whether it differs according to age, sex, and condition leading to death.
The purpose of this study is to understand the significance and the role of the gratitude received from P/R for palliative care health professionals (PCHP). Open Access Article
Having a terminal or life-limiting illness can increase a person’s risk of taking their own life. Find out how to have compassionate conversations and offer support
When Robin Walton was a nursing student on a London hospital ward in the 1960s, a patient climbed out of the window one day and jumped to his death.
To read the full article, choose Open Athens “Institutional Login” and search for “Midlands Partnership”.
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
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
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.
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.
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
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
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
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
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
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
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.
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.
Nurses are being urged to recognise that dying lesbian, gay, bisexual and trans people often have different needs to the rest of the population, say nursing leaders concerned by new evidence of discrimination. To read the full article, log in using your NHS OpenAthens details
‘Enhanced Supportive Care’ was developed by specialists at The Christie NHS Foundation Trust, and will now be used by at least 21 more cancer centres across England, supported by incentives from NHS England.
The initiative encourages care teams to address more fully the needs of cancer patients – in particular, preventing and managing the adverse physical and psychological effects of cancer and its treatment.
This report details the 6 commitments that the government has made to the public to end variation in end of life care across the health system by 2020.
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
Commentary on:
Gomes B, Calanzani N, Koffman J, et al. Is dying in hospital better than home in incurable cancer and what factors influence this? A population-based study. BMC Med 2015;13:235.
Implications for practice and research
The findings of this study indicate that discussions about the patient's and relatives' preference relating to place of death, information about incurability and providing care at home including the possibility of respite for caregivers, increase the probability of home death.
Prospective studies including thorough multidimensional needs assessment are warranted along with randomised trials with interventions containing timely information of incurability and/or preference discussions. To read the full article, log in using your NHS OpenAthens details
Care home residents in England have variable access to health care services. There is currently no coherent policy or consensus about the best arrangements to meet these needs. The purpose of this review was to explore the evidence for how different service delivery models for care home residents support and/or improve wellbeing and health-related outcomes in older people living and dying in care homes.
Approaching end of life is often a time of vulnerability; this is particularly so for people with dementia and their families where loss of capacity and the ability to communicate, make assessment and shared decision-making difficult. Research has consistently shown that improvements in care and services are required to support better quality and more person-centred care for people with dementia towards and at end of life. However, the views of people with dementia about what factors contribute to high-quality care at this time are a neglected area. 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.
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. It is essential that clinicians offer patients facing life-threatening illness, and those close to them, the opportunity to discuss end-of-life issues in line with their information and decision-making preferences. With a growing and ageing global population, supporting both generalist and specialist providers of palliative care in this task is key. With careful preparation, fears of undertaking these discussions should not be a barrier to initiating them. To read the full article, log in using your NHS OpenAthens details
NCPC has just published a new guide on end of life care for older LGBT people.
The publication, “Being Accepted Being Me: Understanding the end of life care needs for older LGBT people” is intended to help health and social care staff and volunteers to learn more about listening, understanding and responding to the unique needs of LGBT people. It has been jointly produced and written by Kathryn Almack of the University of Nottingham and NCPC. It can be seen as a complement to the Marie Curie resource, Hiding Who I Am, released earlier this year, as well as NCPC’s previous publication & DVD
Most people say they do not want to die in hospital, but most people do die there. Where wishes are recorded, care is usually better. The preference was not thought to have been recorded for over 80% of people towards the end of life, in this study.
NHS Employers has produced a short video featuring Salford Royal Foundation Trust and its collaborative approach to delivering end-of-life care training to providers across the region.
Rated outstanding by the Care Quality Commission for its end-of-life care services, the hospital excels in facilitating shared learning and reciprocal training with other hospitals, care homes, primary care and the private sector.
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.
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.
For the NHS England 'Cancer in London' focus in September, we spoke to Carolyn Doyle - the Lead Nurse for the End of Life service in Basildon, Brentwood and Thurrock. Carolyn has over 20 years of experience in end of life care. She takes us through a day in the life of a Clinical Nurse Specialist and shows how to provide the best care for patients at end of life:
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
We will not update the guideline at this time.
We will amend the guideline to replace recommendation 1.1.12 about opioid equivalence for transdermal patches with a cross-reference to the more recent guidance in 'Controlled drugs: safe use and management (2016) NICE guideline NG46'.
We will transfer the guideline to the static list because:
No evidence was identified that would impact on the current guidance and no major ongoing research has been identified as due to be published in the near future (that is, within the next 3–5 years).
We are looking for the following to take part in our Consultation survey:
Roles that will have some regular contact with people receiving end of life care - for example: Healthcare assistants/Care workers; General Practitioners; Doctors (not specialising in end of life care);
Occupational Therapists; Nurses; Social Workers; Leaders of community groups
Those in roles which frequently involve providing end of life care - for example: Healthcare assistants/Care workers in end of life care services; Doctors specialising in end of life care; Occupational Therapists working in end of life care services; Nurses working in end of life care services; Social Workers working in end of life care services;
The Day Hospice is open for one day a week (Thursdays). Patients and their carers attend for part or all of the day hospice day (between 10.00am and 3.00pm). It provides support for people living with a life limiting illness, and their loved ones and carers, in an unhurried, safe and trusting environment.
The service offers holistic care (emotional, spiritual, social and medical), provided by a multidisciplinary team. The team comprises of a physiotherapist, occupational therapist, doctor, nurses, chaplain, complementary therapists and a dedicated group of local volunteers. The Hospice is further supported by other services such Macmillan CNS, Speech and language therapy, Lymphoedema therapy, Social Services and the Third Sector.
England’s most vulnerable children are unable to access the full range of care and support that the government has committed to, a new report by a cross-party group of MPs and peers has revealed
The aim of this study was to enhance understanding about homecare workers providing care to people with dementia at end of life by exploring homecare workers' perceptions of challenges and the support they needed and sometimes received.. To read the full article, log in using your MPFT NHS OpenAthens details.
Psychiatry today is mainly practised within a curative framework. However, many mental disorders are persistent and negatively affect quality of life as well as life expectancy. This tension between treatment goals and the actual illness trajectory has evoked a growing academic interest in ‘palliative psychiatry’, namely the application of a palliative care approach in patients with severe persistent mental illness. Recently, Trachsel et al presented a working definition of palliative psychiatry. This first official attempt to capture the concept is based on WHO’s widely accepted definition of palliative care but modified and limited to include only severe persistent psychiatric illness. While this is a welcome step in the discussion on palliative care approaches in psychiatry, it also opens up for new questions. One of the most evident is whether psychiatry actually needs its own definition of palliative care or, put differently, whether there is something about mental disorders that differs so radically from other medical conditions that it calls for a separate definition. We acknowledge the need to discuss the goals of psychiatric care in patients with severe persistent psychiatric illness. However, we question whether a separate definition of palliative care exclusive to psychiatry is the right way to go. In this paper, we discuss why.. To read the full article, log in using your NHS OpenAthens details.
Janet Scammell, Associate Professor (Nursing), Bournemouth University, considers the importance of education in ensuring nurses have the knowledge and skills to deliver person-centred care at the end of life. To read the full article, log in using your MPFT 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.
The purpose of this project was to explore how registered community nurses experienced providing holistic end-of-life care and how having a structured end-of-life care pathway plan would help develop their knowledge and skills, particularly in respect of communication and their ability and confidence in providing evidence-based compassionate care. For some practitioners there exists a lack of confidence surrounding end of life care, which can result in nurses' reluctance to become involved and avoid engaging in those ‘difficult conversations’. Following implementation, early reviews from practice suggest that incorporating the 19 steps of the plan into the delivery of community-based care at end of life has enhanced practice and patient experience.
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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.
Person-centred palliative care poses high demands on professionals and patients regarding appropriate and effective communication and informed decision-making. This is even more so for patients with limited health literacy, as they lack the necessary skills to find, understand and apply information about their health and healthcare. Recognizing patients with limited health literacy and adapting the communication, information provision and decision-making process to their skills and needs is essential to achieve desired person-centred palliative care. Open Access Article
Citing her own personal experiences, Amber Rudd has asked the Department for Work and Pensions (DWP) to set up an honest and in depth evaluation of how the benefits system supports people nearing the end of their life and those with severe conditions.
Leading learning disabilities research advocate Irene Tuffrey-Wijne uses her role to ‘shout about’ the need to involve service users in healthcare decisions that affect them
Irene Tuffrey-Wijne has made it her life’s mission to campaign on behalf of people with learning disabilities and autism when it comes to end of life care and bereavement. To read the full article, log in using your MPFT NHS OpenAthens details.
Previous research in England showed that deprivation level of a person’s place of residence affects the place of death and quality of care received at the end of life. People dying in their preferred place of death has also been shown to act as an indication for high quality of end of life care services and social equality. This study expands on current research to explore the effects of deprivation and place of residence on health related choices and place of death in Wales.
Open Access Article
Internationally, increasing attention is being paid to understanding patient experiences of health care. Within palliative care, the Views of Informal Carers – Evaluation of Services (VOICES) questionnaire is commonly used for this purpose. Among its objectives is to ask family members if their relatives were treated with dignity at the end of life. This is regarded as useful for understanding the quality of the health care received.
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In children with profound intellectual and multiple disabilities (PIMD), discussions about end-of-life decisions (EoLDs) are comparatively common. Nurses play a crucial role in the care for these children, yet their involvement in EoLD discussions is largely unknown. The objective of this research was to investigate the involvement in the hospital of nurses in discussions with parents and physicians about EoLDs for children with PIMD. . 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.
Over the last decade, paediatric palliative care teams (PPCTs) have been introduced to support children with life-limiting diseases and their families and to ensure continuity, coordination and quality of paediatric palliative care (PPC). However, implementing a PPCT into an organisation is a challenge. The objective of this study was to identify barriers and facilitators reported by healthcare professionals (HCPs) in primary, secondary or tertiary care for implementing a newly initiated multidisciplinary PPCT to bridge the gap between hospital and home.
Open Access Article
Compassion and collaborative practice are individually associated with high quality healthcare. When combined in a compassionate collaborative care (CCC) practice framework, they are reported to improve health, strengthen care provision, and control health costs. Little is known about how to integrate and measure CCC, yet it is fundamentally applied in palliative and end-of-life care settings. This study aimed to identify quality indicators of CCC by systematically reviewing and synthesizing the current state of the palliative and end-of-life care literature.
Open Access Article