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Why you should read this article: • To recognise that being able to die well with dementia is of equal importance to living well with dementia • To consider why there may be a low uptake of advance care planning (ACP) in people with dementia • To learn about when to initiate an ACP discussion with a person with dementia. Recent policy focus in dementia care has been on living well with the condition; however, being able to die well with dementia is of equal importance. Advance care planning (ACP) enables people to consider, express and record their wishes and preferences for palliative and end of life care, however there is a low uptake of ACP in people with dementia. Although ACP discussions should be initiated as soon as possible after a diagnosis of dementia, there are other opportunities and transition points in the person’s care during which health and social care professionals could promote, engage in and support ACP discussions. This article considers the importance of ACP in dementia care and uses a case study to explore opportunities for initiating and engaging in ACP with people with dementia. [ABSTRACT FROM AUTHOR]

Why you should read this article: • To appreciate that the gradual and uncertain trajectory in frailty can be a barrier to advance care planning • To recognise the importance of the early recognition of frailty in prompting conversations on end of life care • To acknowledge the need for all healthcare professionals to receive better education on frailty and its effects. Background: Older people with frailty are susceptible to sudden and rapid deterioration, so discussing their wishes and preferences for care at the end of life should be a priority. However, frailty is often not considered or recognised, which impedes patient-centred decision-making. Aim: To explore the views and perceptions of senior healthcare professionals regarding the usefulness of the Clinical Frailty Scale (CFS) in identifying frailty; whether a CFS score of severe frailty leads senior healthcare professionals to recognise that the person is likely to be approaching the end of life; and whether a CFS score of severe frailty prompts senior healthcare professionals to have conversations about advance care planning and end of life care with patients. Method: Semi-structured individual interviews were undertaken with seven senior healthcare professionals at one hospital in England. Data were analysed using thematic analysis. Findings: Frailty appeared to be complex, multifaceted and at times difficult to identify. A diagnosis of severe frailty did not necessarily prompt advance care planning and end of life care conversations. Such conversations were more likely to happen if the person had comorbidities, for example cancer. Prognostication appeared to be challenging, partly due to the gradual and uncertain trajectory in frailty and a lack of understanding, on the part of healthcare professionals, of the condition and its effects. Conclusion: People with severe frailty may be disadvantaged in terms of receiving appropriate end of life care. Better education on frailty for all healthcare professionals would facilitate conversations about advance care planning and end of life care with patients diagnosed with severe frailty. [ABSTRACT FROM AUTHOR]

Why you should read this article: • To understand how simulation can create a safe environment conducive to deep and meaningful learning • To recognise the importance of enhancing the communication and clinical skills of children’s hospice staff • To learn about a quality improvement project conducted to test simulated learning at a children’s hospice. Simulated learning has well known positive effects but its use in palliative care education is limited. A quality improvement project was undertaken at a children’s hospice to develop and evaluate simulation workshops. The aim was to increase the knowledge, skills and confidence of nurses and healthcare assistants in managing challenging situations commonly experienced when caring for children with life-limiting conditions and their families. The Plan, Do, Study, Act (PDSA) model for improvement was used to test simulation workshops on a small scale using a post-workshop questionnaire and reflective diaries. Despite some initial anxiety, participants felt that the workshop had enhanced their confidence, knowledge and skills, particularly in relation to conducting challenging conversations. The project has provided insight and evidence to develop simulated learning at the children’s hospice and further afield. [ABSTRACT FROM AUTHOR]

Nurses in care homes want their residents to have ‘a good death’ but reaching that outcome can be challenging, particularly for people with advanced dementia. [ABSTRACT FROM AUTHOR]

Why you should read this article: • To gain insight into caring for people at the end of life in the emergency department • To enhance your understanding of the concept of a good death • To count towards revalidation as part of your 35 hours of CPD, or you may wish to write a reflective account (UK readers) • To contribute towards your professional development and local registration renewal requirements (non-UK readers) The focus of care in the emergency department (ED) is on saving or sustaining life, but some patients admitted to the ED die in the ED. Nurses whose focus is on saving lives may therefore find themselves providing end of life care to patients and their families in a stressful and distressing environment. Providing optimal end of life care involves reflecting on what a good death looks like and how patients can be supported to have a good death. This article describes the barriers to optimal end of life care in the ED and prompts nurses to think about how they can enhance their practice when caring for dying patients and their families. [ABSTRACT FROM AUTHOR]

More than half of all people with learning disabilities will die before they reach 65, prompting researchers to call for radical changes in the way they receive end of life care, an area that research indicates is poorly understood. [ABSTRACT FROM AUTHOR]

Why you should read this article: • To recognise that children with complex care needs are at increased risk of developing serious illness which could lead to sepsis • To be aware of a bespoke virtual learning education programme on the care of the acutely unwell child for community palliative healthcare professionals • To identify the need for hospices and community palliative care services to share resources and ensure evidence-based practice for acutely unwell children Children with complex care needs are at an increased risk of developing serious illness which could lead to sepsis. Many children receiving palliative care do not have a completed advance care plan identifying their wishes for ongoing care, which means they would require active intervention if they were to become acutely unwell. Sepsis is the immune system's overreaction to an infection or injury and about 25,000 children are admitted to hospital with sepsis in the UK each year. Early recognition of the acutely unwell child and escalation of concerns from the community to an acute care setting is required to manage and treat a child who is deteriorating. This article describes a project of three phases which aimed to explore the assessment tools available to support recognition and screening of children who became acutely unwell while accessing community palliative care services. It also identifies the importance of working together in partnership with external organisations and acknowledges the achievements of all of the partners involved. [ABSTRACT FROM AUTHOR]

Why you should read this article: • To enhance your understanding of cultural competence in the context of end of life care • To understand the importance of culturally competent end of life care for patients and their families • To consider the role of district nurses in providing culturally competent end of life care The UK population is increasingly diverse, which means that nurses care for patients from a range of ethnic and cultural backgrounds. When caring for people from ethnic minority backgrounds nurses need to apply cultural competence. Developing cultural competence involves appreciating the influence of culture on people's lives, understanding how cultural factors may shape people's healthcare needs and becoming aware of one's own cultural background. It has been shown that palliative and end of life care provision for people from ethnic minority backgrounds is often inadequate in the UK. This article explores cultural competence in end of life care provided by district nurses to people at home. [ABSTRACT FROM AUTHOR]

The death of a patient can be a difficult part of being a nurse and, depending on the healthcare setting you work in, may be something you rarely encounter. Regardless of whether you experience patient deaths regularly or rarely in your role, it is important to know what is expected of you as a registered healthcare professional. From keeping the patient comfortable in their final hours and maintaining their dignity to supporting family members and performing checks to verify death, there is a lot to get right. Failing to do this correctly can have serious consequences, with some nurses even being struck off the register for getting care wrong. [ABSTRACT FROM AUTHOR]

Why you should read this article: • To increase your knowledge of the principles of moving and handling the body of a deceased child • To enhance your decision-making about the practical aspects of the care of children after death • To consider the development of policies and training to standardise care after death in children's hospices Background: Children's hospices provide a range of services for babies, children and young people who have a life-limiting or life-threatening condition, including care after death in specialist 'cool bedrooms'. Care after death is a challenging but important element of hospice care. Aim: The aims of the study were to identify the practices of staff providing care after death in UK children's hospices, notably their moving and handling practices and their management of physiological deterioration, and to produce recommendations that promote safe and consistent practice in moving and handling and in managing physiological deterioration after death in UK children's hospices. Method: An electronic survey was sent to all 54 UK children's hospices. Free-text responses were analysed using deductive content analysis and used to add depth to the quantitative findings. Findings: Out of 54 children's hospices, 33 responded to the survey. There were great variations in the way hospices delivered care after death, notably in length of stay, interventions and equipment. The lack of consistent practice grounded in evidence-based policy and training may mean that some staff experience higher levels of stress and anxiety than others and that some staff take risks when providing care after death, particularly to express empathy towards bereaved families. Conclusion: Recommendations are made about moving and handling a child's body after death and managing its physiological deterioration. Hospices can use these recommendations to develop policy and training, standardise what is expected of staff and support practitioners in adequately caring for children after death. [ABSTRACT FROM AUTHOR]

About in the 46,300 UK experience children the death of a parent each year, according to figures from the Childhood Bereavement Network – that is 127 children every day. And when a parent dies from a prolonged illness, such as cancer, evidence suggests their dependant children experience higher levels of maladaptive grief and symptoms of post-traumatic stress than children whose parent has died suddenly or naturally. [ABSTRACT FROM AUTHOR]

Why you should read this article: • To be aware of the challenges of delivering good-quality end of life care to people with learning disabilities • To recognise the need for partnership working between learning disability and palliative care services • To learn about one particular end of life care pathway being used for people with learning disabilities There is ample evidence of inconsistencies in end of life care service provision for people with learning disabilities. In 2013, in response to the findings of the first report of the Confidential Inquiry into Premature Deaths of People with Learning Disabilities, a multidisciplinary steering group - including learning disability nurses and palliative care staff - was established in Berkshire, in the UK, to support learning disability staff to provide good-quality end of life care to service users. Findings from a literature review and a retrospective audit informed the development of an end of life care pathway for people with learning disabilities. The pathway aims to provide learning disability staff with a unified and structured approach that places the service user at the centre of care and enhances partnership working with palliative care services. The pathway prompts the development of a personalised care plan that respects the wishes of the person and their family. The pathway is now in use by community learning disability teams across the county. In this article the authors explain the background and rationale for the pathway and describe its development and implementation. [ABSTRACT FROM AUTHOR]

Terminal agitation is a palliative symptom that patients sometimes experience as they enter the last days and hours of their life, and which can leave nurses feeling distressed, according to research. [ABSTRACT FROM AUTHOR]

A woman living with dementia once told me that she had tried to discuss her declining health with several health and social care professionals. She was in her nineties with multiple long-term conditions and aware she was approaching the end of her life. She began these discussions by saying: ‘I won’t be here this time next year.’ This was often met with a response such as: ‘Don’t be silly, you will outlive us all.’ The absurdity made her laugh. [ABSTRACT FROM AUTHOR]

Providing clinically assisted hydration (CAH) to dying patients is one of the most contentious issues in end of life care. A major study is under way to assess the risks and benefits. Why is providing hydration in this way not as clear-cut as many assume? [ABSTRACT FROM AUTHOR]

Death is inevitable, which makes having conversations about it vitally important. [ABSTRACT FROM AUTHOR]

Children and young people's nursing can go in fascinating directions – and it can be a lot of fun too. We hear from children's nursing pioneers with different career pathways about the reasons they entered the field, and what makes them stay. [ABSTRACT FROM AUTHOR]

The article discusses the results of a study on the status of palliative care for patients with advanced case of dementia. Topics mentioned include some issues regarding end of life care for people with advanced dementia, the best practice for practitioners providing care for patients with dementia, the use of open communication, clear information and a person-centered technique as an early intervention of dementia, and the types of advance care plans in the United Kingdom.

Competing Interests: Competing interests: None declared.

Alison Pickard had been a nurse for more than 40 years, often caring for patients at the end of life, when she was diagnosed with motor neurone disease (MND). [ABSTRACT FROM AUTHOR]

This article presents a literature review that was undertaken to explore the challenges experienced by paid carers when providing palliative care to adults with intellectual disabilities. The outcomes show that providing palliative care to people with intellectual disabilities is fraught with difficulties. Professionals, whether they work in palliative care services or in intellectual disability services, face an array of challenges that limit their ability to provide high-quality care. These challenges include limited experience, difficulties in identifying and managing symptoms, such as pain and distress – partly because of diagnostic overshadowing – and suboptimal coordination of care, collaboration between services and communication with patients. This article outlines some recommendations arising from the literature that may improve the provision of palliative care for people with intellectual disabilities. [ABSTRACT FROM AUTHOR]

Quality of life is a major consideration in children's palliative care, particularly at the end of life. Optimal symptom management is crucial in maintaining quality of life, with the aim being to ensure the child is as comfortable as possible. Ensuring adequate hydration will often be part of symptom management but may be associated with several practical and ethical challenges. Subcutaneous fluid administration in children's palliative care is relatively uncommon, so there is a lack of evidence on the topic. This article demonstrates that it is feasible to use subcutaneous fluid therapy in the children's hospice setting to address patients' hydration needs and manage their symptoms. It presents a case study of a child who received subcutaneous fluids in a children's hospice for dehydration and myoclonus. It uses the case study to discuss subcutaneous fluid therapy in the children's palliative care setting, including its indications and contraindications, administration, complications and important factors to consider. [ABSTRACT FROM AUTHOR]

This is the introductory article in a six-part series in Nursing Older People exploring the nursing care of people living with advanced dementia. It discusses the complex and progressive array of nursing required to meet the needs of individuals, the provision of personal care, learning and leadership, meaningful activity, and palliative and end of life care. A main theme of the series is the exceptional nursing skills and knowledge required to deliver evidence-informed care with compassion and respect for people living with advanced dementia. This introductory article provides background information to contextualise advanced dementia and identify the main challenges facing nurses, nurse educators and nurse leaders. [ABSTRACT FROM AUTHOR]

The aim of this literature review was to analyse the available evidence from families and carers of patients with life-limiting conditions to identify any inconsistencies in the provision of palliative care by district nurses. A systematic search of medical and nursing databases such as Cumulative Index to Nursing and Allied Health Literature (CINAHL), PubMed, MEDLINE, Summon and the Cochrane Library was conducted using several keywords. Following a critical analysis of the available evidence, ten primary research studies were selected that addressed the research question. The literature review identified two main themes from the ten primary research studies: access to palliative care services and the quality of palliative care provided by district nurses. The literature review identified that there was often suboptimal coordination of district nursing palliative care services and significant variations in access to these services. While family members' and carers' perceptions of palliative care provided by district nurses were frequently positive, outof-hours palliative care was often regarded as inadequate. The introduction of a named palliative care district nurse could improve access to palliative care, ensuring district nursing services are consistent and providing enhanced support for patients, carers and families. The evidence identified in this literature review indicates that palliative care services are accessed primarily through district nurses and that district nurses are optimally placed to coordinate services. However, further research is required into the extent of district nurses' palliative care knowledge and skills to inform future educational initiatives. [ABSTRACT FROM AUTHOR]

This article describes an initiative in a small independent hospice to develop an equalities steering committee to identify and meet the needs of underrepresented groups in the local community. The involvement of clinical staff, particularly nurses, as well as local equality engagement officers and representatives from marginalised groups, supports the development of service improvement plans. The committee promotes fairer access to palliative care services by raising awareness of equality issues, removing barriers and addressing the challenges in achieving high-quality, end of life care. [ABSTRACT FROM AUTHOR]

AUTH Why you should read this article: • To enhance your knowledge of the role of 'arts-in-health' initiatives • To understand how a Singing Medicine project can improve the outcomes of children with long-term conditions in hospital • To recognise how the concept of the 'hospital family' can benefit children and their relatives Aim: The aim of this study was to explore family members' perceptions of a Singing Medicine project undertaken by children with long-term conditions in one children's hospital. Method: A qualitative approach was used involving semi-structured interviews with the family members of children aged 3-14 years who had long-term conditions and were being cared for at one children's hospital in England. Interviews were digitally recorded, anonymised and stored in a password-protected space. Data were analysed using thematic analysis. Findings: Analysis identified five themes: people in purple shirts; music and emotions; being part of a 'hospital family'; distraction therapy; and lasting effects and life after illness and death. The negative effect for children of being separated from their homes and families during long-term hospital stays was evident, but positive effects, such as developing new relationships, were also identified. Participating in the Singing Medicine project provided children with opportunities to express themselves. The concept of belonging to a hospital family emerged from the study, which could potentially reduce stressors and enhance children's well-being and capacity to cope with long-term illness. Conclusion: The findings showed that participation in 'arts-in-health' initiatives such as the Singing Medicine project was associated with benefits for children with long-term conditions and their families, such as a reduction in negative emotions and enhanced well-being through distraction and the sharing of positive experiences. Ensuring that children who spend prolonged periods of time in hospital have opportunities to play and express themselves is a priority for healthcare services. [ABSTRACT FROM AUTHOR]

It is the privilege of nurses to be present at the beginning and the end of life, says RCN professional lead for community and end of life care Carolyn Doyle. [ABSTRACT FROM AUTHOR]

Motor neurone disease (MND) results in disabilities that affect most activities in daily life. Patients with MND require care and support with these activities at some stage. Care for people with disabilities in the UK is usually provided informally by family members, friends and significant others. Health and social care services also provide care for people in their homes. However, there is a paucity of evidence on how well health and social care professionals who are not MND specialists are prepared. This study explored how generalist health and social care professionals perceived their preparedness to care for patients with MND at home in palliative and end of life care. It found that practitioners needed formal training and that support from the multidisciplinary team was valued. Practitioners need to be updated about how to care for patients with MND. [ABSTRACT FROM AUTHOR]

Supporting and managing end of life in emergency departments (EDs) is often difficult and is becoming increasingly commonplace. Patients who present at the end of life are often triaged as low priority as their signs and symptoms are not considered life-threatening and they are often exposed to unnecessary and inappropriate tests and investigations. This results in increased stress and distress for patients and their family and carers in an environment that is not suited to this type of care. There are few specified palliative care pathways that provide the level of care required by these patients. This article describes the Time is Precious (TiP) project, the development of a palliative care decision-making framework to support and address the needs of patients who present to an ED at end of life, in a timely and appropriate manner. It also reports findings of an evaluation of TiP that show patients are identified more quickly and cared for more appropriately as nursing and medical care can be tailored to meet their needs. [ABSTRACT FROM AUTHOR]

Many of us became nurses because of our acute sensitivity to emotion, starting at a young age. [ABSTRACT FROM AUTHOR]

COVID-19 has been called the biggest healthcare challenge in a generation. [ABSTRACT FROM AUTHOR]

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. This article introduces the ADVANCE toolkit featuring a values-based framework that aims to help caregivers who work with young people who have learning disabilities, including nurses, social workers and care assistants, develop their confidence and skills in end of life care planning. The ADVANCE toolkit enables insight in knowing how, when and with whom to discuss the sensitive topic of planning for end of life care. In this article, six activities are included for readers to complete with a view to enabling engagement with the material presented. [ABSTRACT FROM AUTHOR]

Idiopathic pulmonary fibrosis is a life-limiting interstitial lung disease. We do not know what causes it and there is no cure. People experience debilitating symptoms and delays before a diagnosis is confirmed are not uncommon. Palliative and end of life care for these patients is of variable quality. This article introduces and discusses the complexities of recognition, treatment and management of idiopathic pulmonary fibrosis, emphasising the importance of the primary care and community nurse roles. The implications for nursing practice in managing this group of people to live well and to die well will be explored. [ABSTRACT FROM AUTHOR]

The prevalence of long-term health conditions is increasing as the population ages. Resources are limited and costs are increasing. Patients are often elderly with multiple co-morbidities. This article focuses on heart failure and the complexities and challenges of managing it in a community setting. It describes the authors' roles of heart failure specialist nurse and advanced community practitioner for long-term conditions, and how they have worked together to improve patients' experiences and provide timely, holistic care. Their aim is to reduce unnecessary hospital admissions, improve patients' quality of life and end of life care, and support their family and carers. [ABSTRACT FROM AUTHOR]

The article focuses on the opportunity being offered by care homes to registered nurses to use their knowledge and skills to provide nursing care to older people with complex needs. Topics discussed the range of people to be cared for by registered nurses in care homes, other specialists who work with nurses in care homes, and care homes as a learning environment for nurses.

Dame Cicely Sounders is not well known as a nursing theorist, but is undoubtedly worthy of her recognition as the founder of the modern hospice movement. She developed the theory of 'total pain' which bases care of the dying on the whole person; treating not just the physical expressions or perceptions of pain, but also the psychological, social and spiritual aspects. This article considers how other models of end of life nursing care compare to Dame Cicely's theory and whether total pain theory can be applied in practice today. [ABSTRACT FROM AUTHOR]

Providing end of life care (EOLC) in emergency departments (EDs) is challenging because of minimal resources, lack of staff education and outdated models of care. Dynamic, chaotic environments like EDs require systematic, clear and concise principles and goals for patient care. Death in EDs is inevitable, therefore staff should be equipped to provide optimal care to this vulnerable patient group. This article reviews the literature on the barriers to providing EOLC in EDs, and makes recommendations for clinical practice and further research. EOLC refers to care of terminally and critically ill patients in their final days and hours of life. [ABSTRACT FROM AUTHOR]