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Background: This integrative review explores the use of digital health technologies in palliative care within Southeast Asia. Despite extensive documentation of digital health in palliative care in Western nations, its application in Southeast Asia remains underdeveloped. Method: The review includes a total of four papers meeting the eligibility criteria. Findings: The findings reveal limited studies of digital health adoption in palliative care. Key technologies include mobile health applications, electronic health records and telemedicine platforms. Challenges, such as health inequities, data security and the need for technology validation were identified. The review underscores the necessity for region-specific research to address these challenges and improve the integration of digital health in palliative care. Conclusion: This study highlights the potential of digital health to enhance palliative care delivery and patient outcomes in Southeast Asia, advocating for increased adoption and tailored implementation strategies. [ABSTRACT FROM AUTHOR]

An introduction is presented in which the editor welcomes Sonja McILfatrick as the journal's consultant editor, offers update on the partnership of the journal with the European Association of Palliate Care as well as future outlook on the commissioning of papers and commentaries, publication of papers and ethnic diversification of its editorial board.

The provision of palliative care in the UK has traditionally focused on people with cancer. People who are elderly, live in rural areas or have diagnoses other than cancer often have difficulty accessing palliative care services. Community hospitals could be important for those groups currently under-served. A literature review was conducted to determine the role played by community hospitals in the provision of palliative care in the UK. Papers were identified using a keyword search of six electronic databases and hand search of five journals. Fifteen papers were identified according to inclusion and exclusion criteria. Findings indicate that many community hospitals in the UK already have the resources to counter inequalities in access to general palliative care. Much of the evidence uses quantitative methods based on small or non-representative samples and retrospective data collection approaches. Insufficient information about the populations involved meant that findings could not be fully interpreted. More prospective research using qualitative methods involving patients, carers and nurses is required to fully understand the complexities of providing palliative care in this setting. [ABSTRACT FROM AUTHOR]

Appropriate diluent selection in continuous subcutaneous infusion optimises symptom management and client well-being. The responsibility of diluent selection is commonly one of the attending nurse. This paper was developed with the intention of providing nurses with practical instruction for diluent selection when preparing medications for administration subcutaneously using a syringe driver. A literature review was undertaken of published journal databases and published guidelines sites. Recommendations regarding diluent choice were reviewed in two iterations by an expert panel of palliative care nurse clinicians. The principles for diluent selection are presented. They are based primarily on expert opinion level of evidence given a lack of primary research evidence in the area of diluent selection. There is a pressing need for manufacturers' guidance on diluent selection and independent research to establish the impact of diluents on drug and drug combinations when using syringe drivers. Until such time that this evidence is available to guide practice, clinicians need to be trained to inspect solutions and assess the effectiveness of the medication in controlling symptoms. The capacity of this paper to provide practical instruction has been limited by the lack of rigorous evidence available, and indeed, the process of developing this guide identified perhaps more questions than answers available at the present time. [ABSTRACT FROM AUTHOR]

Aim: To explore the role of UK district nurses in providing care for adult patients with a terminal diagnosis by reviewing qualitative research. Design: Meta-ethnography was used to conduct the synthesis. Data sources: CINAHL, MEDLINE and British Nursing Index (BNI) were searched comprehensively for primary research relating to the role of UK district nurses in palliative care. Review methods: The abstracts and titles of 700 papers were screened against inclusion criteria, of these 97 full papers were appraised. Some 24 studies reported in 25 papers were selected for inclusion in the synthesis. Findings: In total, five key themes were identified: valuing the role; practical role; relationships with patients and families; providing psychological support; and role uncertainty. Further synthesis yielded two ‘lines of argument’. The concept of the ‘expert friend’ argues that the atypical relationship district nurses cultivate with patients underpins district nurses’ provision of palliative care and profoundly influences the nature of psychological support given. Secondly, the concept of ‘threat and opportunity’ encapsulates the threat district nurses can feel to their traditional role in palliative care through changing health and social policy, while recognising the benefits that access to specialist knowledge and better training can bring. Conclusion: The findings have implications for understanding the motivators and barriers experienced by district nurses delivering palliative care in a time of unprecedented change to community health services [ABSTRACT FROM AUTHOR]

Background: In palliative care, caregivers frequently act as surrogate decision-makers, but their knowledge of patients' preferences for end-of-life care is sometimes scarce and incorrect. Advance Directives might be a powerful communication tool to promote the dialogue between patients and caregivers. Aims: This work aims to find evidence supporting the use of the Advance Directives documents by health practitioners as a communication tool to improve caregivers' capacity as health surrogates in palliative care. Methods: A literature review was conducted in four databases—Medline, Web of Science, Scopus, and Cochrane to identify studies published until February 27th, 2021, analysing advance directive's use as a communication tool between palliative patients and their caregivers. Findings: Of the 1251 papers screened, only one article met the defined criteria, presenting results statistically favourable to advance directive's use, although with the risk of significant bias. Conclusions: Although the results seem promising, more studies are needed to validate this strategy scientifically. [ABSTRACT FROM AUTHOR]

It is estimated that 60% of patients diagnosed with head and neck cancer will receive radiotherapy at some stage in their disease trajectory. The aim of this literature review was to find and analyse papers pertaining to the lived experiences of patients with head and neck cancer receiving radiotherapy. The review identified a limited number of high-quality research papers focusing on this topic, with only 10 papers fitting the inclusion/exclusion criteria. The majority of the investigative studies were not generalisable owing to small sample sizes and many of them being conducted in only one centre. However, the findings do highlight and contribute to the understanding of the lived experiences of this patient group and provide some insight into the unique physical, social, and psychological difficulties they encounter as a result of their treatment. There appears to be a need for further high-level research into these patients, particularly focusing on the provision of support and information prior to, during, and following radiotherapy. Further attention needs to be paid to preparing patients for the slow recovery following radiotherapy. Interventional studies are also required to develop clinical guidelines and protocols that can assist health professionals in meeting the holistic needs of this patient group. [ABSTRACT FROM AUTHOR]

An understanding of the impact of recurrent metastatic breast cancer diagnosis is vital to palliative care nurses since the prognosis for such women is generally poor and many present with a complex range of physical and psychosocial problems. However, while many quantitative studies have focused on quality of life in patients receiving different treatments for their metastatic disease, researchers have paid very little attention to the personal impact of recurrent disease and few qualitative papers have been published on this phenomenon. This literature review, therefore, provides an overview of the main issues affecting breast cancer patients with recurrent metastases, and identifies the key differences between this group and those diagnosed with other forms of breast cancer. In total, the literature search identified 10 papers which attempt to describe women's reactions to a diagnosis of recurrent metastatic breast cancer, although many do not focus solely on the experiences of this group of patients. The review provides fresh insight into these experiences and explores common themes arising from the literature so that nurses may better understand the patient's experience and respond to their needs appropriately. [ABSTRACT FROM AUTHOR]

Background: Many palliative care health settings that care for children and young people (CYP) at the end of life use the buccal mucosa as a route of drug administration to manage the sudden onset of symptoms, such as seizures, agitation and dyspnoea, and for breakthrough pain management. The buccal route is a minimally invasive method that delivers fast symptom relief and is useful for those with swallowing impairment or reduced enteral absorption. Aim: This paper reports on a small retrospective study involving 26 CYP who received end-of-life care between January and December 2017 to review the advantages and disadvantages of using buccal opioids for breakthrough pain relief with a focus on diamorphine as the preferred opioid. Method: A retrospective case note review. Findings: This paper shares the clinical practice experiences from one UK organisation of care for CYP at the end of their lives and contributes to the growing body of pharmacological evidence. Conclusion: Buccal opioids, specifically buccal diamorphine, are an effective strategy to treat breakthrough pain or dyspnoea in CYP. [ABSTRACT FROM AUTHOR]

Background: Pain is prevalent among older people, yet is often under-recognised and undertreated in people with dementia. The nurse has a central role in identifying and appropriately assessing pain in order to provide effective treatment. Research however suggests there are significant deficits in this area. Aim: To explore the evidence on nurses' knowledge and attitudes to pain assessment in older people with dementia. Design: A systematic narrative review of peer-reviewed articles published between 2000 and 2014. Data sources: Seven electronic data bases (CINAHL, MEDLINE, PsycInfo, Wiley, Pubmed, ProQuest and OVID) were searched and articles focusing on nurses knowledge and attitudes on pain assessment towards people with dementia. Methods: Research participants within the studies reviewed were to include registered nurses involved in the assessment and management of pain in older adults with dementia from across all healthcare settings (e.g. dementia units, nursing homes, community and acute settings). Results: Data were systematically analysed from 1 1 papers. Using an inductive approach for thematic content analysis informed by the theory of planned behaviour, five themes were identified. These included: 1) Challenges in diagnosing pain in dementia 2) Inadequacies of pain assessment tools 3) Time constraints and workload pressures 4) Lack of interdisciplinary teamwork and communication 5) Training and education. Conclusion: Nurses play a key role in the effective management of pain through the use of pain assessment tools, behavioural observation, and analgesic choice. Pain assessment in dementia remains challenging for nurses due to the complexity and individualisation of pain behaviours. The accessibility of appropriate training, workforce stability and a standardised approach to pain assessment are key to the successful management of pain in older people with dementia. [ABSTRACT FROM AUTHOR]

Background: Most deaths occur in people over the age of 65 years, yet there is widespread evidence that older people have inequitable access to good palliative and end-of-life care. For people with dementia, there are further barriers to receiving palliative care. Identifying when older people with dementia are reaching the end of their lives is not straightforward. A palliative approach to care has been recognised as key in UK practice guidance; the National Institute of Health and Care Excellence recommends that, from diagnosis, people living with dementia should be offered flexible, needs-based palliative care that takes into account how unpredictable dementia progression can be. However there are still wide gaps in care in the dementia pathway, largely because commissioning is fragmented. Method: This paper describes the Admiral Nurse case management approach to palliative care by benchmarking its practice against the European Association of Palliative Care white paper recommendations for palliative care in dementia. [ABSTRACT FROM AUTHOR]

The article summarizes several published research articles relevant to palliative care. It includes the synopses of a paper in "Palliative Medicine" by D. Clark et al investigating the proportion of in-patients in Scottish hospitals that die within certain time points, a report by M. R. O'Brien and colleagues on the experiences of people with motor neurone disease (MND) and a paper by H. Golla et al stating Germany's perception of palliative care.

Pain is a complex symptom that is commonly feared in palliative care owing to its significant effects on patients' quality of life (QoL), and is directly associated with morbidity. More specifically, the management of breakthrough pain (BTP) is particularly important. Opioids play a major part in the management of BTP, and the various transmucosal immediate-release fentanyl (TIRF) products are a common treatment choice. This paper considers the strength of the evidence underlying recommendations regarding the use of TIRF. Failure to consider the quality of evidence in practice can lead to misguided recommendations. Guidelines should therefore be used to inform clinicians of the quality of the underlying evidence and whether recommendations are strong or weak. The GRADE (Grading of Recommendations Assessment, Development, and Evaluation) approach is increasingly being adopted worldwide as it provides a system for rating quality of evidence and strength of recommendations that is clear, comprehensive, transparent, and practical. This paper adopts the GRADE approach to assess the strength of recommendations made in a 2011 review by Zeppetella in order to develop guidelines for the use of TIRF. The recommendations include that TIRF products can be considered for first-line treatment and that they should be individualised to patients who are on a background opioid. [ABSTRACT FROM AUTHOR]

Psychological distress is common in palliative care patients and their families, and anger is a complex component of distress experienced by many patients at the end of life. Anger can be a form of tension release, as well as a coping mechanism for the patient and a way to disguise fear and anxiety.The interdisciplinary team are responsible for recognising psychological distress in patients, assessing their needs, and providing adequate psychological support. Although a certain level of psychological distress such as anger is expected in terminally ill patients owing to their situation, such responses may also be dysfunctional. This paper aims to highlight the challenges and complexities of adequately assessing and supporting palliative care patients who are presenting with psychological distress in the form of anger, in order to relieve their suffering and assist them in resolving their issues and improving their quality of life. Anger can be difficult to treat, and for some patients can be more distressing than some physical symptoms. Hence this paper also aims to offer anger management guidance to palliative care practitioners. [ABSTRACT FROM AUTHOR]

There are difficulties in assessing, managing, and evaluating neuropathic pain in dying children, particularly those with neurological impairment. Neuropathic pain in children often presents differently to how it presents in the adult population. Comprehensive assessment as well as pharmacological and non-pharmacological interventions are crucial to its successful management and frequently require input from an interdisciplinary team. Notwithstanding the need for further research, this paper brings together research papers, reviews, and clinical guidelines to present an exploration of existing evidence regarding care for children with neuropathic pain and their families. [ABSTRACT FROM AUTHOR]

This review paper explores the use of telehealth in relation to palliative care in the UK. Information technology (IT) developments are being harnessed throughout society, and there is growing interest in the ways in which they can be used to meet and support patients' health needs in the community. The aim of the literature review was to scope the information available from published and unpublished research, with particular reference to older people. The evidence suggests that, despite the challenges, there are numerous examples of good practice in relation to telehealth, palliative and end-of-life care, and older people. Developments in technology that have increased the capacity to improve care, through reaching greater numbers of people of all age groups, mean that telehealth has much to offer people living with and dying from advanced illness. However, some of the evaluative evidence is limited and further rigour is needed when evaluating future telehealth innovations. [ABSTRACT FROM AUTHOR]

Around 1-3% of the world's population has intellectual disabilities (Mash and Wolfe, 2004). Communication difficulties are a major obstacle in providing effective palliative care to this group. Problems may arise due to a lack of comprehension and a lack of verbal skills, affecting assessment and the provision of psychosocial support. This paper maps the communication difficulties experienced by people with intellectual disabilities within a palliative care setting, drawing on several research studies carried out by the authors. These include the time-consuming nature of effective communication, and difficulties around breaking bad news. The paper explores the ways in which people with intellectual disabilities may (mis)understand verbal information. Strategies for managing communication difficulties are outlined, including ways to use clear, unambiguous language. The authors conclude that the ability to communicate effectively with people with intellectual disabilities is a useful skill that will benefit all patients. [ABSTRACT FROM AUTHOR]

Palliative care should be fully accessible to all those who need it. However, some individuals may be disadvantaged from a palliative care perspective, for a variety of different reasons. This paper brings together three practitioners working in different professional roles who all have a similar interest: palliative care for people with intellectual disabilities. Each practitioner will describe how they are developing local, practice-based initiatives in an effort to improve palliative care for this marginalised group in North Staffordshire, congruent with local and national policies. [ABSTRACT FROM AUTHOR]

As the number of patients with end-stage renal disease continues to grow in Hong Kong, many are opting to be managed conservatively without dialysis. A new service was initiated in Tuen Mun Hospital in 2004 aimed at offering palliative care to dying patients with renal failure. This paper presents retrospective data reflecting our dealings with patients who decided not to initiate or considered discontinuation of dialysis. In total, 107 patients received palliative care from the inception of the new service in August 2004 until July 2006. The findings illustrate that decisions related to initiation or withdrawal of dialysis are often related to personal beliefs and sentiments. Further exploration using qualitative methodology is recommended. The case history expounds a situation in which the patient cannot participate in decision-making concerning treatment options and offers some exploration of the ethical intricacies involved in treating very sick patients with dialysis therapy. [ABSTRACT FROM AUTHOR]

Background: There are an increasing number of people living with dementia, as well as an expectation that care decisions are made collaboratively with those with the disease entering the end stage and their families. This has increased the burden on family carers. Aim: To explore the evidence on the decisional support needs of informal carers of people with end-stage dementia. Design: A rapid scoping review was undertaken of peer-reviewed publications between 2000 and 2016, which included all health-care settings and the person's own home. Six databases were searched (CINAHL, MEDLINE, EMBASE, BNI, PSYCHINFO, Web of Science) and all papers meeting the inclusion criteria were read. A thematic analysis was undertaken of the selected papers using a pragmatic approach based on how the papers addressed the research question. Results: Sixty papers were individually appraised, with 40 being included in the review. Of these papers, 11 were literature reviews and 29 were primary studies. The themes identified were: the influential factors in carer decision making, the scope of carer decision making, the conflicts/problems in carer decision making, the resources carers need to make decisions and the impact of carer decision making. Conclusion: To date, the emphasis in dementia care has been on living well with dementia, but realistically there is a need to plan for a 'good death' that includes the person and their carers. There is a need to support people with dementia and their carers to make an advance care plan, while the person with dementia can take part in the decision-making process. This proactive intervention is likely to reduce carer decision burden at end of life and facilitate achievement of death in the person's preferred place, which is usually the home or care home. [ABSTRACT FROM AUTHOR]

Aim: To analyse the use of e-Health technologies and mobile apps in palliative care (PC). Methods: Search on PubMed, using 'telemedicine', 'ehealth', 'mobile health', 'telecare', 'health information systems' and 'palliative care'. Original Portuguese, Spanish, French and English papers were included. Google Play and App Store (iOS) were searched for mobile apps using 'palliative care', 'medical apps' and 'symptom management'. Results: Twenty-five papers and forty mobile apps were analysed. Teleconsultation is the principal e-Health technology. Mobile apps focus on communication, drugs, tools/clinical guidelines, hospice, symptom management and PC information. Conclusions: e-Health is an emergent topic in PC. Teleconsultation enhances communication among patients, families and PC teams, reinforces partnership and decreases the burden on families and use of the emergency services. Implications for practice: e-Health technologies are a good strategy in PC but further research based on different methodological approaches is needed to promote evidence-based practice. [ABSTRACT FROM AUTHOR]

In the palliative phase of a person's illness, the needs of the patient and informal caregivers are paramount. Caregivers often look to palliative care practitioners for support, guidance and emotional comfort. This article reviews the role of the informal caregiver at the end of life, summarising their concerns and needs. The paper also highlights caregiver difficulties in making the coping transition when the patient's medical condition becomes advanced and they require end-of-life care. The focus of the review is placed on discussions about Advanced Care Planning (ACP). ACP is a complex legal, ethical and practical issue that can enable caregivers to consider future strategies and enable them to provide high quality care at the end of life. The paper looks at some of the ethical and legal issues associated with this sensitive end-of-life issue. [ABSTRACT FROM AUTHOR]

Background: Rapid identification of the palliative care needs of individuals with a diagnosis of advanced lung cancer is crucial to maximise the patient's quality of life by upholding exemplary standards of patient-centred holistic care. The clinical nurse specialist is in an ideal position to contribute to the identification and management of the palliative care needs of individuals with advanced lung cancer through the assessment and timely prescribing of medications to manage distressing symptoms. Aim: This paper reviews and critiques the role of the clinical nurse specialist as an independent non-medical prescriber in the management of palliative symptoms in end-of-life care for patients with advanced lung cancer. Results: Published literature highlights the positive impact the clinical nurse specialist has as a non-medical prescriber in addressing the palliative needs of individuals with lung cancer. However, there are barriers and challenges, and to overcome these, maximising resources and the availability of support is required to ensure the delivery of timely, person-centred care. Conclusion: The clinical nurse specialist as a non-medical prescriber is an evolving role. There are a range of factors that may influence the clinical nurse specialist to confidently and competently undertake this role. These include the perception that there will be an escalation in the workload, concerns about increased accountability and inadequate mentoring for this new role. To incentivise this role, multidisciplinary support is essential in promoting the clinical nurse specialist's confidence for developing this service to individuals with advanced lung cancer. [ABSTRACT FROM AUTHOR]

Background: This paper investigates the palliative care competencies (knowledge, behaviours, attitudes) and education needs of nurses and healthcare assistants (HCAs) who provide supportive (Level 2) palliative care. Methods: A mixed-methods study using a sequential exploratory design was used, with findings integrated across sources. Qualitative focus groups were conducted in 2018 with a sample of staff (n=11, all female; nurses=4; HCAs=7) providing supportive palliative care in a single service setting. A quantitative survey, also conducted in 2018, explored the issue with a wider sample within the same setting (n=36; nurses=18; HCAs=18; female=32). Results: Qualitatively, communication was highlighted as an important domain of the competence framework, with many participants acknowledging that the ability to communicate effectively is essential. Quantitatively, participants scored in the lower range for competency variables. A significant difference was observed between HCAs and nurses on measures of knowledge (t= -2.718; df=30; p<.05) and behaviour (t=-3.576; df=30; p<.05), with HCAs scoring significantly higher than nurses. In relation to education, while some participants report being indecisive regarding engaging in education/training, others highlighted the benefit of education, especially its ability to impact on their current practice. Conclusion: This research contributes to understanding palliative care competencies among nurses and HCAs working in palliative care, and has important implications for the education and training of nurses and HCAs working in Level 2 palliative care in Ireland. [ABSTRACT FROM AUTHOR]

Breakthrough pain is common in patients with cancer. This paper describes the clinical features of breakthrough cancer pain (BTcP) and its impact on activities of daily living. It also describes the principles of BTcP management, highlighting some of the current issues and problems. A follow-up paper will describe current approaches to managing BTcP. [ABSTRACT FROM AUTHOR]

This paper will highlight some of the pertinent issues associated with palliative and end-of-life decision-making in relation to dementia. To achieve this, the author will consider why there is disparity in relation to shared decision-making practices across non-malignant disease through exploration of models of disease trajectories. The author will then go on to highlight how people living with dementia, a non-malignant disease, have a human right to receive palliative care and be an active agent in the shared decision-making process about their future and care preferences. The challenges of shared decision-making in dementia care will be discussed along with some implications for nursing practice. The aim of this paper is to provide nurses, practising across all settings, with an overview of the fundamental importance of timely palliative and end-of-life shared decision-making in dementia care. [ABSTRACT FROM AUTHOR]

Pleural effusions are a common cause of symptoms in patients with malignancy and can adversely affect quality of life. However, not all effusions in the setting of malignancy are due to the cancer itself and therefore it is essential to perform an extensive assessment to diagnose the underlying aetiology. There are a number of treatment options available to manage a malignant effusion and reduce the associated symptomatology. The choice of intervention depends on a number of factors and, in particular, patient preference. In this paper, we will discuss the role of an indwelling pleural catheter in the outpatient management of individuals with malignant effusions. [ABSTRACT FROM AUTHOR]

Background: Reports from patients on seeing or hearing a dead relative or dreaming a highly significant dream at the end of life can be perplexing for health professionals who may wonder how best to respond. Aim: The aim of this study was to systematically review the literature on deathbed phenomena (DBP), and provide suggestions for a clinical response to dying patients’ recounts of these hard-to-explain phenomena. Methods: The authors searched for relevant studies which reported on DBP within a palliative care context. Eligibility criteria were established, a review process was employed and a narrative synthesis approach was used to interpret the data. Results: In total, eight papers met the inclusion criteria. Reported prevalence of DBP ranged from 24–51% with common themes described. Distinguishing between DBP and hallucinations was discussed, requiring very different clinical responses. Phenomena were timed most often in the last hours or days before death. Experiencing a DBP was, in most cases, deeply meaningful, bringing comfort, peace and reassurance. Health professionals were not surprised to hear of a DBP, but were not always well prepared to respond appropriately. Conclusions: Rather than simply dismissing DBP as medication related or the physiological effects of dying, the significance of these events and the comfort afforded by them to patients and carers should be recognised. Disclosure of DBP may enable health professionals to discuss more spiritual and existential concerns, which have the potential to offer hope, meaning and connection. We propose strategies and approaches for strengthening compassionate clinical practice in this area. [ABSTRACT FROM AUTHOR]

Background: This paper builds on findings from phase one of a participatory action research study, which investigated support for family carers at the end of life in an acute hospital setting in Scotland, UK (Dosser and Kennedy, 2012). The research presented here is the second phase of the participatory action research study, in which nursing staff from an acute hospital ward are involved in ongoing analysis of data and ideas guided by action cycles and reflection. Methods: Two key change initiatives are reported; improving nurses’ communication skills and improving the environment for family carers of loved ones at the end of life within the acute hospital setting. To address these points, nurses were enrolled on a communications skills course, and a new room for family carers was integrated into the hospital. Results: Data were analysed from interviews and questionnaires with the nurses, and from insights gathered in a reflective diary taken by the researcher. The changes implemented improved the confidence of participants in communicating with carers as well as patients and colleagues. Conclusion: The findings highlight practical strategies and communication issues that can potentially impact on the grief experience of family carers, such as having a safe space nearby to rest in private, away from the bedside. [ABSTRACT FROM AUTHOR]

In Thailand, several barriers exist that prevent people with life-limiting illnesses from accessing good-quality palliative care, namely: lack of palliative care providers; lack of training and education for the palliative care workforce; and issues with availability and distribution of opioids. Without palliative care, people suffer needlessly during the last months of their life. This paper gives an analysis of these issues and provides recommendations for clinical practice, research and health policy that may help to alleviate these issues. [ABSTRACT FROM AUTHOR]

Background: Following patient preferences at the end of life should improve outcomes of care, yet patient preferences regarding bladder and bowel care are not often accommodated, as they are not well known in the literature. Aims: This scoping review sought to identify bladder and bowel care preferences of patients at the end of life in published literature. Methods: Papers published in or after 1997 (in English) that focused on adult preferences for bladder and bowel care at the end of life were included. Findings: Scant literature exists on preferences for bladder and bowel care for adult patients at end of life. Further investigation is warranted to arrive at a better understanding of preferences regarding bladder and bowel symptom management. Conclusions: Future research should explore if prioritising the symptoms caused by incontinence, among the many symptoms experienced at the end of life, could be achieved through careful questioning and development of a standardised tool focused on improving patient care and incorporating patient preferences for care. [ABSTRACT FROM AUTHOR]

Background: Staff working in community palliative care services are accustomed to the intimate conversations that a patient being at home can engender. Being at home can provide a safe space for a patient to express difficulties, including expressing a desire for hastened death. With the implementation of voluntary assisted dying in Victoria in mid-2019, palliative care services have needed to review and adapt policies and practices to incorporate this new procedure. While it was anticipated that a small percentage of people would request access to voluntary assisted dying, in the wake of such significant change, there were numerous implications for palliative care services to consider. This paper describes both the organisational and individual changes undertaken by one community-based palliative care service, in anticipation of legalised assistance in dying. The range of responses to the issues raised are discussed, in preparation for, and in the early days of, voluntary assisted dying. [ABSTRACT FROM AUTHOR]

Abstract Spirituality could be understood as a personal belief, a relation with sacred, divine experience, a sense of purpose and meaning towards life, authenticity and connectedness. It is a continually evolving, highly complex, contextual, subjective, and sensitive construct. A continuous development is seen around understanding about spirituality and spiritual concepts, such as spiritual experiences, spiritual pain and spiritual distress, especially among patients and families at the end of life. The concepts, values, attitudes, and beliefs around spirituality, spiritual needs and expressions vary among different individuals, cultures, and religions. There is a dearth of literature around spirituality, especially among Muslim patients and families at the end of life. The complexities around the concept of spirituality in the literature raise several ethical and methodological concerns for a novice researcher while planning and conducting a study on spirituality during end-of-life care in a hospice setting, especially among a Muslim population. This paper aims to share some of the methodological and ethical challenges that can be faced by qualitative researchers while conducting research around spirituality and end-of-life care in an Islamic/Muslim context. Major challenges include defining the term spirituality, spirituality and culture, communication, power relations, language and translation, recruitment and selection of the participants, emotional distress, and reflexivity and reciprocity. Having an in-depth understanding of these challenges can guide researchers to address these issues adequately in their spirituality research in a Muslim context. [ABSTRACT FROM AUTHOR]

Education is viewed as central to improving future palliative care for children and families across all countries. International education initiatives will ensure practitioners are aware of global health issues and can provide culturally sensitive care. Creative and innovative means of meeting such directives are required to achieve meaningful student learning. This paper focuses on one innovation, a children’s palliative care workshop using case studies as a teaching method, with nursing students from the USA and nursing and midwifery students from the UK. Key learning points arising from student evaluation were recorded under three main themes, these were: differences across countries, similarities across countries, and making learning fun and memorable. Findings indicated that this joint learning activity was viewed positively by all students and has enabled them to learn with and from each other, potentially impacting on their future practice. [ABSTRACT FROM AUTHOR]

The first Australian palliative care nurse practitioner (NP) was endorsed in 2003. In 2009 the Victoria Department of Health funded the development of the Victorian Palliative Care Nurse Practitioner Collaborative (VPCNPC). Its aim was to promote the NP role, develop resources, and provide education and mentorship to NPs, nurse practitioner candidates (NPCs), and health service managers. Four key objectives were developed: identify the demographic profile of palliative care NPCs in Victoria; develop an education curriculum and practical resources to support the training and education of palliative care NPCs and NPs; provide mentorship to NPs, NPCs, and service managers; and ensure effective communication with all key stakeholders. An NPC survey was also conducted to explore NPC demographics, models of care, the hours of study required for the role, the mentoring process, and education needs. This paper reports on the establishment o f the VPCNPC, the steps taken to achieve its objectives, and the results of the survey. The NP role in palliative care in Australia continues to evolve, and the VPCNPC provides a structure and resources to clearly articulate the benefits of the role to nursing and clinical services. [ABSTRACT FROM AUTHOR]

Neonates and babies have the highest death rate in the paediatric population. Perinatal palliative care aims to enhance the quality of life of babies with a life-limiting condition and their families. However, very little data is available on perinatal palliative care and its impact on babies and families along their journey. End-of-life decision-making for babies with an adverse prognosis also remains ethically challenging. This paper provides an overview of perinatal palliative care and its development, and then considers some of the issues affecting this field by looking at single national, institutional, and patient case studies. [ABSTRACT FROM AUTHOR]

Little is known about the quality of the end-of-life care patients receive at home. This paper reports findings from a study that explored bereaved relatives' and carers' experiences of end-of-life care at home using the Care of the Dying Evaluation (CODE) questionnaire. Narrative data from questionnaires completed by 72 carers of patients who had died at home in the North West of England underwent qualitative analysis. In general good quality care was provided, but there were times when adequate support was not evident in relation to pain control and what to expect when death was imminent. The study provides useful information for those who provide end-of-life care at home. [ABSTRACT FROM AUTHOR]

Most terminally ill people express a preference for dying at home. Within established models of palliative care, achieving death at home is a particular challenge for homeless people. This paper describes a quality-improvement project undertaken by a community-based palliative care service in Melbourne, Australia, to understand homeless people's palliative care needs and the challenges that workers face. Six semi-structured interviews with workers in hospital and community-based settings were undertaken and a case study documented. The results were used to initiate discussion about how policy and protocols for the community-based palliative care service might serve this population more effectively. The findings confirmed that homeless people have complex psychosocial and medical needs. They may be periodically uncontactable or living in unsafe settings, experience isolation from social support networks, and have issues of compliance with treatment protocols exacerbated by mental health problems and/or substance abuse. Service providers had particular challenges in meeting the palliative care needs of homeless people. A flexible, compassionate, and coordinated response is required, and more work is needed to explore how the needs of this particular group can be met. [ABSTRACT FROM AUTHOR]

Complex palliative wounds, although uncommon, are extremely distressing for patients because of their associated symptoms. Managing these symptoms presents significant challenges to clinicians. As the majority of these patients will be managed at home, district nurses will be the main providers of care. The quality of the literature in this field is limited due to the small number of patients presenting with these wounds and the difficulties associated with researching issues within palliative care. However, the literature available identifies that community nurses would value greater education in managing these wounds because the accepted wound healing theories and management strategies do not apply. This underpins the rationale for developing an educational resource to provide district nurses with current, evidence-based information to support their woundmanagement decisions in caring for this patient group. This paper reports the development, through an action research work-based project, of such an interactive educational package. [ABSTRACT FROM AUTHOR]

Malignant pleural effusion (MPE) is a distressing condition for the patient, causing many symptoms such as shortness of breath, dry cough, an uncomfortable feeling of heaviness in the chest, and pleuritic pain. MPE reduces quality of life and functional status. It indicates that the disease is now advanced and life expectancy is generally short, with a median prognosis of 3-12 months depending on the stage of the disease and the underlying malignancy. This paper discusses the palliative treatment options for MPE, which include thoracentesis, medical pleurodesis, and indwelling pleural catheter. It is important that decisions about treatment are made within the multidisciplinary team and alongside the patient and family. Treatment goals are concerned with the relief or elimination of dyspnoea, restoration of near-normal activity and function, and avoidance of inpatient care. [ABSTRACT FROM AUTHOR]

Advance care planning (ACP) is a process being championed within health and social care, particularly since the publication of the UK Department of Health's 2008 End of Life Care Strategy. However, its implementation in dementia care is yet to be fully realised and can pose significant ethical and legal dilemmas for the generic and specialist workforce, the patient themselves, and their family or loved ones. Challenges may be attributable to inadequate communication, capacity issues, missed opportunities, and the perception that dementia is not a life-limiting illness. The aim of this paper is to highlight the benefits of ACP for individuals with dementia while appraising the recognised barriers to assist in developing some realistic recommendations for future practice. [ABSTRACT FROM AUTHOR]

Considering the worldwide ageing of populations, there is a growing need for rehabilitation programmes specifically designed for geriatric patients. The authors developed and implemented a post-acute geriatric rehabilitation programme in a skilled nursing facility for patients with advanced chronic obstructive pulmonary disease (COPD)-the GR-COPD programme. This paper describes the characteristics of the programme and presents three case studies to illustrate its possible benefits for individual patients. The case studies show that integration of rehabilitation and palliative care components is essential, as patients with advanced COPD admitted to hospital for an acute exacerbation often suffer from high symptom burden, deteriorating quality of life, and poor prognosis. Development and implementation of a post-acute GR-COPD programme is feasible and can offer substantial benefits for patients with advanced COPD admitted to hospital for an acute exacerbation. [ABSTRACT FROM AUTHOR]

This paper reports on a longitudinal follow-up evaluation of an interprofessional experiential course to support the development of effective communication and interpersonal relationship skills in palliative care: 'It's good to listen: advanced communication skills in end of life care'. The course was developed from evidence-based guidance produced by the West of Scotland Cancer Network and NHS Education for Scotland in 2009. The aim of the study was to explore the factors that support or hinder the sustainable integration of skills and learning from the course into clinical practice. Three focus groups were held across the NHS Board area. Following analysis of the transcripts the emergent themes were grouped under four headings; impact on practice, facilitating factors, hindering factors, and organisational issues. The findings suggest that organisations should consider the value they place on supporting interpersonal skills in end-of-life care and how they can enhance the facilitating factors and mitigate hindering factors to ensure sustainability and behavioural change. [ABSTRACT FROM AUTHOR]

Approximately 3 million health-care workers throughout the world, and more than 1 million in Europe, experience a percutaneous injury each year as a result of accidents with needles or other sharps. The consequences of this can be devastating, ranging from fear, anxiety, discomfort, and embarrassment to contraction of blood-borne infections. A new European Union Directive on the prevention of sharps injuries that must be implemented by May 2013 aims to ensure that health-care workers throughout Europe have access to safer sharps and needle-free devices. The present paper outlines what the introduction of this directive will mean for health-care services, with particular consideration of palliative and specialist palliative care services. [ABSTRACT FROM AUTHOR]

Most children with a life-limiting condition are cared for in the family home by their parents, who require professional support to provide this care. Owing to advances in medicine and medical technology these children are living longer and, given the often relentless and all-encompassing nature of caring for children with life-limiting conditions, respite (facilitation of short breaks) is considered central to quality palliative care provision for children and their families. However, there is still ambiguity in exactly what is meant by the term 'respite', what constitutes respite care, whether the services currently provided meet the needs of the child and family, and how respite is best provided. This paper reviews the literature relating to respite as a component of children's palliative care. Themes from the literature are identified and discussed. Challenges for the providers of respite care are identified and suggestions made regarding the future development of responsive and family-focused respite care. [ABSTRACT FROM AUTHOR]

Background: Nutritional problems often manifest during late-stage dementia, and some families may request to instigate artificial nutrition and hydration (ANH) therapies. In the US, an estimated one-third of nursing home patients with a severe cognitive impairment have artificial feeding tubes inserted. Fear that a relative could experience extreme hunger or thirst if they are not mechanically fed tends to be the main driver behind family's requests to implement artificial or enteral feeding methods. In contrast, artificial hydration is rarely given to older people with dementia in the UK and this practice of non-intervention tends to apply across all healthcare and hospice type environments. Aim: This literature review aims to evaluate the evidence to support the use and non-use of ANH. Method: A literature review was undertaken to examine the evidence around ANH for patients with dementia to offer support to families or carers contemplating feeding choices. Conclusion: This paper challenges the implementation of invasive ANH worldwide. It highlights how resorting to ANH does not necessarily lead to improvements in comfort, survival or wound healing. The risk of aspiration does not appear to significantly alter either. [ABSTRACT FROM AUTHOR]

Emotional support is important for health professionals working in the demanding area of hospice/palliative care. While physical safety practices and effective human resource support are generally available to staff, one New Zealand hospice has taken this a step further by developing an emotional safety policy that incorporates personal, professional, and organizational measures designed to protect and promote staff members' emotional safety and to minimize stress and fatigue. The aim of this paper is to provide the background and rationale for this work, to introduce a case study around best practice, and to describe the development of the emotional safety policy, which provides effective support for all staff working at the hospice. [ABSTRACT FROM AUTHOR]

In one UK hospice, inpatient unit records showed that over 8 years 12 needlestick injuries related to continuous subcutaneous infusion of medication occurred. Following a change-over to Teflon cannulae no further incidents were reported. However, when the more sensitive and accurate McKinley T34 syringe drivers were introduced in 2007 a new problem of recurrent occlusion alarm sounding manifested. Investigation revealed that the Teflon cannulae were often kinking, delaying medication delivery and necessitating re-siting of the cannula. The action research approach was used to find an alternative device to improve practice and ensure that both staff and patients were safeguarded. This paper explains how that process was followed until a satisfactory alternative was sourced and evidenced, including an account of the problems that were experienced along the way. [ABSTRACT FROM AUTHOR]

Over recent years there have been several political imperatives in the UK directed toward children's palliative care and ensuring that services are high-quality, coordinated, family-centred, and able to meet the needs of children with complex disabilities. In addition, in 2010 the health and social care regulation authority in England-the Care Quality Commission (CQC)-aligned hospices with regulation and inspection requirements. This context has acted as a driver for the creation of effective education and training to ensure a skilled and expert workforce. Against this backdrop, this paper describes a project to develop a learning and development strategy for Children's Hospices across London (CHaL). CHaL educators worked with a research team to develop a unified strategy that was based on evidence of good practice, embedded in required CQC outcomes, and validated with a wider audience. The resultant strategy contains a set of four key learning and development principles that are applicable and transferable across different hospices. [ABSTRACT FROM AUTHOR]

Background: The UK Department of Health's End of Life Care Strategy highlighted the low percentage of patients who achieve their wish to die at home (~20%). Figures in south west London were below the London regional average. This paper reports an attempt to improve the proportion of patients from one hospital in the area achieving their preferred place of death. Methodology: A funded initiative by two local primary care trusts allowed the development of a 7-day-per-week fast-track discharge service provided by the hospital palliative care team. The hospital team acted as coordinators, ensured that the correct medication and equipment would be available at the home, and personally transferred the patients to community services. Results: Data is presented from the first representative period of fast-track discharging (June 2009-July 2010). A total of 110 discharges were facilitated over this time, with the rate increasing as the service developed. The vast majority of discharges occurred within 72 hours, and a significant number (~20%) occurred within 24 hours. Conclusions: The data indicate that the new service is effective. There are logistical problems in providing such a service and these are discussed. Further work is required to determine the feasibility of extending this service model to other acute hospitals and to evaluate its health-economic impact. [ABSTRACT FROM AUTHOR]