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AimTo synthesize information about management of end of life care in people with dementia using review papers.BackgroundThere are increasing numbers of people being diagnosed with dementia worldwide, and the needs of people with dementia and their carers at the end of life may be different from those with other chronic diseases. By highlighting the challenges of palliative care in persons with dementia and the ways they are best managed, practitioners in primary care may be able to improve services for this group of people at the end of life.MethodsA search of electronic databases of English language papers published in peer-reviewed journals, 2000–2011 inclusive was undertaken using broad terms related to palliative care and dementia. 6167 papers were identified. Titles and abstracts were read. Papers were included if they were literature reviews of palliative or end of life care for people with dementia/Parkinson's disease/Lewy body dementia/cognitive impairment/Alzheimer's disease or any other cognitive impairment, in any setting (hospital, care home, community) and covering people of all ages. Papers were excluded if they covered palliative care focusing on other conditions, or were about an aspect of dementia care and treatment not related to palliative care.FindingsOur critical synthesis generated five main themes from this review of the reviews: (1) carers’ (family caregivers’) experiences; (2) person-centred care; (3) practice (including advance care planning, pain and comfort, nutrition, medical complications and minimizing the distress of behavioural symptoms); (4) system factors, including ethical dilemmas, decision making, information, and training; and (5) research priorities. There appears to be good evidence on the care and management of patients with dementia at the end of life which can be used to influence policy development and emerging specificity about research priorities in palliative care practice for people with dementia. [ABSTRACT FROM PUBLISHER]

Objective: Palliative care for children is becoming an important subspecialty of healthcare. Although concurrent administration of curative and palliative care is recommended, timely referral to pediatric palliative care (PPC) services remains problematic. This literature review aims to identify barriers and recommendations for proper implementation of palliative care for children through the looking glass of PPC guidelines.Method: To identify studies on PPC guidelines, five databases were searched systematically between 1960 and 2015: Scopus, PubMed, PsycINFO, the Web of Science, and CINAHL. No restrictions were placed on the type of methodology employed in the studies.Results: Concerning barriers, most of the papers focused on gaps within medical practice and the lack of evidence-based research. Common recommendations therefore included: training and education of healthcare staff, formation of a multidisciplinary PPC team, research on the benefits of PPC, and raising awareness about PPC. A small number of publications reported on the absence of clear guidance in PPC documents regarding bereavement care, as well as on the difficulties and challenges involved in multidisciplinary care teams.Significance Of Results: Our results indicate that a critical assessment of both the research guidelines and medical practice is required in order to promote timely implementation of PPC for pediatric patients. [ABSTRACT FROM AUTHOR]

The 2002 Dutch Euthanasia law applies to patients aged 12 years and older. Developments in end-of-life care and decision-making in the last decade have sparked the debate about usefulness and necessity to extend euthanasia to include children under 12 years of age. This paper describes two opposite positions: the affirmative position of a pediatrician and expert in pediatric palliative care and the negative position of a jurist and specialist in health law. [ABSTRACT FROM AUTHOR]

Objective: Our objective was to review how meditation could comfort the terminally ill.Method: Our methodology was a literature search, which included books, journals, papers in collections, and online databases. The main search engines employed were Google Scholar and the Durham University Library. The main databases consulted were the Christian Meditation Centre, Project Meditation, and Stress-Related Facts and Well-Being at Monash. We were specifically interested in data acquired from clinical and nonclinical trials. The arguments needed to be based on qualitative and quantitative scientific data. Papers were published between 1985 and 2014. We then subdivided the review into three subcategories: physical, emotional, and self-awareness. When reviewing each category, we put our results into tabular form. In each table, we noted the percentage of terminally ill patients (TIPs) and non-terminally ill patients (NTIPs), and whether meditation had comforted them.Results: Our review demonstrated that there are many areas that have yet to be researched. First, very little work has been done on how meditation affects the physical health of TIPs, including such variables as blood pressure, chronic pain, and sleeping patterns. However, no research has been done on heart disease, hypertension, depression, among others. Second, virtually no research has been conducted on how meditation affects the mental health of TIPs. Notably neglected areas include anxiety, compliance, depression, and stress. Third, no research has been done on whether meditation increases self-awareness in TIPs. In each of these cases, most NTIPs reacted positively; however, no research has been done on why TIPs reacted differently.Significance Of Results: Our results demonstrate the need for further research on how meditation affects terminally ill patients. In turn, this would enrich the debate on whether meditation should be prescribed for the dying. [ABSTRACT FROM AUTHOR]

Objective: There is growing recognition of the importance of increasing preparedness for and the provision of palliative care in humanitarian crises. The primary objective of this review is to interpret the existing literature on culture and palliative care to query the recommendation that humanitarian healthcare providers, teams, and organizations integrate palliative care into their practice in ways that are attentive to and respectful of cultural differences.Methods: A critical interpretive synthesis was applied to a systematic literature review guided by the PRISMA framework. Analysis was based on directed data extraction and was team based, to ensure rigor and consistency.Results: In total, 112 articles covering 51 countries and 9 major worldviews met inclusion criteria. This literature describes culture as it influences perspectives on death and dying, expectations of palliative care, and challenges to providing culturally sensitive care. A key pattern highlighted in articles with respect to the culture and palliative care literature is that culture is invoked in this literature as a sort of catch-all for non-white, non-Christian, indigenous practices, and preferences for palliative care. It is important that humanitarian healthcare providers and organizations aiming to enact their commitment of respect for all persons through attention to potential culturally specific approaches to pain management, suffering, and dying in specific crisis settings do so without reproducing Othering and reductionistic understandings of what culturally sensitive care in humanitarian crises settings involves.Significance Of Results: This paper clarifies and unpacks the diverse influences of culture in palliative care with the goal of supporting the preparedness and capacity of humanitarian healthcare providers to provide palliative care. In doing so, it aids in thinking through what constitutes culturally sensitive practice when it comes to palliative care needs in humanitarian crises. Providing such care is particularly challenging but also tremendously important given that healthcare providers from diverse cultures are brought together under high stress conditions. [ABSTRACT FROM AUTHOR]

Palliative care and medical-legal partnership are complementary disciplines dedicated to integrating care to treat the whole patient and intervening before a legal or medical issue is at a crisis point. In this paper, we discuss the founding and operations of the Yale Palliative Medical Legal Partnership, give examples of typical cases, explain special considerations in this area of law, and propose areas for further research. [ABSTRACT FROM AUTHOR]

Objectives: Electrochemotherapy uses electric fields to facilitate the influx of chemotherapy into cancer cells, producing a targeted effect. For head and neck cancer, it is mainly used for palliation of non-skin-origin metastases. It is used infrequently in the UK. This paper presents our experience and a UK survey to identify its frequency of use. Methods: Between 2016 and 2019, a prospective database was created and reviewed. Only patients with non-skin-origin metastatic head and neck cancer, with no other palliative options, were included. Survival length, complications and symptomatic benefit were assessed. The survey was conducted via e-mail. Results: Five patients were included: three with squamous cell carcinoma, one with esthesioneuroblastoma and one with hepatocellular carcinoma. Survival ranged from 1 month to over 20 months. Minor complications were seen. Only 15 out of 69 UK head and neck multidisciplinary teams offer electrochemotherapy. Conclusion: Electrochemotherapy is a well-tolerated adjunct to standard palliation of metastatic head and neck cancer, and is offered by a limited number of UK multidisciplinary teams. [ABSTRACT FROM AUTHOR]

For many years, dementia care has been dominated by the standard medical approach, in which dementia is treated mainly with drugs, such as anti-anxiety, antidepressant and anti-psychotic medications. With the aim of seeking effective treatments for patients with dementia, over the last years, several contributions have criticised the pervasive use of drugs for the management of behavioural and physiological symptoms related to dementia, proposing personalised interventions aimed at supporting patients and their relatives from diagnosis until death. With particular reference to long-term settings, in this work, we aim at understanding the organisational implications of three types of interventions (labelled supportive care interventions – SCIs) that have characterised this shift in dementia care: person-centred, palliative and multi-disciplinary care. Conducted by following the integrative review method, our review underlines how SCIs have controversial consequences on the quality of care, the care-givers' quality of life and cultural backgrounds. After an in-depth analysis of selected papers, we offer some considerations about the implications of SCIs for long-term care organisations and future research directions. [ABSTRACT FROM AUTHOR]

Objectives: Families facing end-stage nonmalignant chronic diseases (NMCDs) are presented with similar symptom burdens and need for psycho-social-spiritual support as their counterparts with advanced cancers. However, NMCD patients tend to face more variable disease trajectories, and thus may require different anticipatory supports, delivered in familiar environments. The Life Rainbow Programme (LRP) provides holistic, transdisciplinary, community-based end-of-life care for patients with NMCDs and their caregivers. This paper reports on the 3-month outcomes using a single-group, pre-post comparison.Method: Patients with end-stage NMCDs were screened for eligibility by a medical team before being referred to the LRP. Patients were assessed at baseline (T0), 1 month (T1), and 3 months (T2) using the Integrated Palliative Outcome Scale (IPOS). Their hospital use in the previous month was also measured by presentations at accident and emergency services, admissions to intensive care units, and number of hospital bed-days. Caregivers were assessed at T0 and T2 using the Chinese version of the Modified Caregiver Strain Index, and self-reported health, psychological, spiritual, and overall well-being. Over-time changes in outcomes for patients, and caregivers, were tested using paired-sample t-tests, Wilcoxon-signed rank tests, and chi-square tests.Results: Seventy-four patients and 36 caregivers participated in this research study. Patients reported significant improvements in all IPOS domains at both 1 and 3 months [ranging from Cohen's d = 0.495 (nausea) to 1.793 (depression and information needs fulfilled)]. Average hospital bed-days in the previous month fell from 3.50 to 1.68, comparing baseline and 1 month (p < 0.05). At 3 months, caregiver strain was significantly reduced (r = 0.332), while spiritual well-being was enhanced (r = 0.333).Significance: After receiving 3 month's LRP services, patients with end-stage NMCDs and their caregivers experienced significant improvements in the quality of life and well-being, and their hospital bed-days were reduced. [ABSTRACT FROM AUTHOR]

Objective: Multimedia interventions are increasingly used to deliver information in order to promote self-care among patients with degenerative conditions. We carried out a realist review of the literature to investigate how the characteristics of multimedia psychoeducational interventions combine with the contexts in which they are introduced to help or hinder their effectiveness in supporting self-care for patients with degenerative conditions.Method: Electronic databases (Medline, Science Direct, PSYCHinfo, EBSCO, and Embase) were searched in order to identify papers containing information on multimedia psychoeducational interventions. Using a realist review approach, we reviewed all relevant studies to identify theories that explained how the interventions work.Results: Ten papers were included in the review. All interventions sought to promote self-care behaviors among participants. We examined the development and content of the multimedia interventions and the impact of patient motivation and of the organizational context of implementation. We judged seven studies to be methodologically weak. All completed studies showed small effects in favor of the intervention.Significance Of Results: Multimedia interventions may provide high-quality information in an accessible format, with the potential to promote self-care among patients with degenerative conditions, if the patient perceives the information as important and develops confidence about self-care. The evidence base is weak, so that research is needed to investigate effective modes of delivery at different resource levels. We recommend that developers consider how an intervention will reduce uncertainty and increase confidence in self-care, as well as the impact of the context in which it will be employed. [ABSTRACT FROM AUTHOR]

This paper claims that palliative care (PC) is a suitable approach for offering comprehensive support to patients with life-threatening illness and unavoidable asthenia, to enhance their quality of life in aging and chronic illness. There are however some conceptual barriers to accessing that care on the Chinese Mainland: (1) Death-denying culture and society; (2) Misguidance and malpractice derived from the biomedical model; (3) Prejudice against PC and certain deviant understandings of filial piety culture. To counter these obstacles, the study introduces the philosophy of Chinese Taoist Chuang-tze to enlighten the public from ignorance and remove some illusions about death and dying; inspire people to face and accept illness and death calmly, and keep harmony and inner peace of mind to alleviate suffering, with the aim of providing wisdom and a shift of attitude toward life and death. Chuang-tze's thoughts are consistent with the provision of palliative care, and to a certain degree, can promote its acceptability and delivery, and the conception of good death in practice. [ABSTRACT FROM AUTHOR]

This paper explores the common argument proposed by opponents of the legalization of euthanasia that permitting ending a patient's life at their request will lead to the eventual legalization of terminating life without request. The author's examination of data does not support the conclusion that a causal connection exists between legalizing ending of life on request and an increase in the number of cases without request. [ABSTRACT FROM AUTHOR]

Objective: This paper aims to explore the extent to which the "revivalist" discourse of a good death, which promotes an awareness of dying shapes the lived realities of palliative care patients and their families in Portugal.Method: An ethnographic approach was developed. Participant observation was carried out in 2 palliative care units, and this was complemented by in-depth interviews. Ten terminally ill patients, 20 family members, and 20 palliative care professionals were interviewed.Results: The "revivalist" good death script might not be suitable for all dying people, as they might not want an open awareness of dying and, thereby, the acknowledgment of imminent potential death. This might be related to cultural factors and personal circumstances. The "social embeddedness narrative" offers an alternative to the "revivalist" good death script.Significance Of Results: The "revivalist" discourse, which calls for an open awareness of dying, is not a cultural preference in a palliative care context in Portugal, as it is not in accord with its familial nature. [ABSTRACT FROM AUTHOR]

Objectives: The cognitive state of the dying in the last days of life may deteriorate, resulting in a reduced ability to communicate their care needs. Distressing symptoms, physical and existential, may go unrecognized and untreated. The objectives of this integrative review were to systematically interrogate the literature to determine the changing conscious state of dying adults and to identify changes in their care needs.Methods: An integrative review protocol was registered with PROSPERO (CRD42020160475). The World Health Organization definition of palliative care informed the review. CINAHL, MEDLINE (OVID), Scopus, PsycINFO, Cochrane Library, and PubMed were searched from inception to October 2019 using search strategies for each database. Inclusion and exclusion criteria were applied. Methodological quality was appraised using the Joanna Briggs Institute Checklist for the Case Series appraisal tool. Extracted data were synthesized using a narrative approach.Results: Of 5,136 papers identified, 11 quantitative case series studies were included. Six themes were identified: conscious state and change over time, awareness, pain, absence of holistic care, the voiceless patient, and signs and symptoms of dying.Significance Of Results: In the last days of life, the physical and conscious state of the dying patient declines, resulting in an inability to express their care needs. Dignity in dying and freedom from pain and suffering are both an imperative and a human right; and unvoiced care needs can result in unnecessary suffering and distress. This review revealed that little is known about how healthcare professionals assess holistic care needs at this vulnerable time. Although much has been written about palliative and end-of-life care, the assessment of care needs when patients are no longer able to voice their own needs has largely been ignored, with little attention from clinical, educational, or research perspectives. This gap in evidence has important implications for the dying and their families. [ABSTRACT FROM AUTHOR]

Objective: Occupation, or meaningful activity, can contribute to the well-being and quality of life of all individuals. It is thus a logical tautology that occupation should be enabled for those at the end of life. Our present review examines current provision of these processes by Occupational Therapist, who can be much-valued members of multidisciplinary palliative care teams.Method: Following a literature search and critical selection, 10 global papers were identified examining occupation and occupational therapy at the end of life in the acute, hospice, and community environments.Results: Universally, there appeared to be a dearth of therapists working in end-of-life care. Provision of palliative care in hospitals was found to be compensatory or rehabilitative. Hospice therapy emerged as pleasingly occupational, though the number of hospice places was disappointingly few. Community literature was sparse, so it proved challenging to draw definitive conclusions. Promising research refracted light on occupation at home; however, it also revealed stretched domiciliary services, where clients are not well informed about the potential scope of occupational therapy.Significance Of Results: A "good death" involving a quality end-of-life experience is the foundational goal overarching all therapy and medicine in the provision of palliative care. Arguably, an occupation-focused approach provided by therapists meets client needs to enable meaningful experiences in the limited time left to them. Current occupational therapy practice environments are not necessarily achieving these goals in commensurate fashion. There is a need to promote the role of occupational therapy and circumscribe what therapists can offer. Further research is necessitated across all environments and future funding for therapist positions in palliative teams. End-of-life care can be complex and challenging; however, therapists can facilitate fulfillment of client-centered occupational goals. In engaging with personally constructed nuances of meaning, quality of life can be improved in those deserving of a significant and emotionally rich daily existence during their final days. [ABSTRACT FROM AUTHOR]

Objective: Management of head and neck cancer patients provides unique challenges. Palliation serves to optimise quality-of-life by alleviating suffering and maintaining dignity. Prompt recognition and management of suffering is paramount to achieving this. This study aimed to assess perceived confidence, knowledge and adequacy of palliative training among UK-based otolaryngologists. Method: Eight multiple-choice questions developed by five palliative care consultants via the Delphi method were distributed over five weeks. Knowledge, perceived confidence and palliative exposure among middle-grade and consultant otolaryngologists were assessed, alongside training deficits. Results: Overall, 145 responses were collated from middle-grade (n = 88, 60.7 per cent) and consultant (n = 57, 39.3 per cent) otolaryngologists. The mean knowledge score was 5 out of 10, with 22.1 per cent (n = 32) stating confidence in palliative management. The overwhelming majority (n = 129, 88.9 per cent) advocated further training. Conclusion: A broad understanding of palliative care, alongside appropriate specialist involvement, is key in meeting the clinical needs of palliative patients. Curriculum integration of educational modalities such as simulation and online training may optimise palliative care. [ABSTRACT FROM AUTHOR]

One of the first steps to early integrate palliative care into oncology practice is a timely and efficient evaluation of symptoms (Bakitas et al., 2015; Davis et al., 2015; Temel et al., 2010). In a recent position paper, the Italian Association of Medical Oncology tells oncologists that they "must be able to prevent, recognize, measure, and treat all cancer-related symptoms" (Zagonel et al., 2017). Major international scientific societies such as the American Society of Clinical Oncology and the European Society of Medical Oncology have often defined the key role of symptoms evaluation and management to force the integration of palliative care into oncology (Davis et al., 2015; Ferrel et al., 2017). Nevertheless, a recent survey conducted by the Italian Association of Medical Oncology shows that only 20% of oncologists regularly uses valid tools to evaluate symptoms, 45% exclusively use them in the context of clinical trials, 30% use them only occasionally, and 5% never use them (Zagonel et al., 2016). [ABSTRACT FROM AUTHOR]

Objective: This paper presents a case of an isolated pituitary fossa metastasis on a background of a previously treated tonsillar squamous cell carcinoma. Case report: A 64-year-old male, diagnosed with a primary p16-negative squamous cell carcinoma in the right tonsil, was treated with a course of chemoradiotherapy with curative intent. Positron emission tomography/computed tomography, performed at six months post-treatment, revealed a good local response and no distant metastases. The patient was placed on routine follow up at two-monthly intervals. Two months into follow up, he presented with a right-sided oculomotor nerve palsy and partial Horner's syndrome. Imaging and biopsy revealed a pituitary fossa metastasis (p16-negative squamous cell carcinoma), and a further positron emission tomography/computed tomography visualised this lesion. He was deemed unsuitable for further intervention and underwent palliative radiotherapy for symptom control. Conclusion: This case represents the first reported isolated pituitary fossa metastasis from a tonsillar squamous cell carcinoma. A high degree of clinical suspicion is recommended, along with a low threshold for biopsy and a cautioned use of positron emission tomography/computed tomography, when investigating such patients. [ABSTRACT FROM AUTHOR]

ABSTRACTObjective:Living with a parent who is approaching the end of life is profoundly troubling for young people. Research indicates that family communication about life-limiting parental illness can influence how young people manage living with dying. In particular, open communication between family members has been shown to be helpful. This paper reports on a study of young people's experiences of family interaction when a parent is dying and considers the practice of open communication in the context of young people's involvement in giving and receiving family care.Methods: A narrative approach was employed based on in-depth semistructured interviews with 10 young people (aged 13-21) living with a parent thought to be in the last year of life.Results: Young people's attitudes toward open communication between family members were more ambivalent and ambiguous than previous research suggests. Parental attempts at open communication were sometimes overlooked by young people, indicating that there may be differences between knowledge given and young people's acknowledgment of sensitive information. Some young people valued open communication as a signifier of the close relationships between family members, while others wanted to exercise more control over what they knew, when, and how. Young people's accounts challenged the positioning of young people as passive recipients of information. Young people were active in shaping family communication in their everyday lives, and deliberative acts of speaking or remaining silent were one way in which young people exercised care for themselves and others.Significance Of Results: This study extends research on communication within families when a parent has a life-limiting illness and suggests that supporting young people's agency in determining how they receive information may be more beneficial than promoting open communication between family members. [ABSTRACT FROM AUTHOR]

ABSTRACTObjective:Experiences of bereavement can be stressful and are frequently complicated by emotional, familial, and financial issues. Some-though not all-caregivers may benefit from bereavement support. While considered standard within palliative care services in Australia, bereavement support is not widely utilized by family caregivers. There is little research focused on the forms of bereavement support desired or required by family caregivers, how such care is viewed, and/or how bereavement support is experienced. This study examined the experiences of bereaved family caregivers and their impressions of and interactions with bereavement support.Method: This paper reports on one aspect of a broader study designed to explore a range of experiences of patients and caregivers to and through palliative care. Focusing on experiences of bereavement, it draws on qualitative semistructured interviews with 15 family caregivers of palliative care patients within a specialist palliative care unit of an Australian metropolitan hospital. The interviews for this stage of the study were initiated 3-9 months after an initial interview with a family caregiver, during which time the palliative patient had died, and they covered family caregivers' experiences of bereavement and bereavement support. Interviews were digitally audiotaped and transcribed in full. A thematic analysis was conducted utilizing the framework approach wherein interview transcripts were reviewed, key themes identified, and explanations developed.Results: The research identified four prevalent themes: (1) sociocultural constructions of bereavement support as for the incapable or socially isolated; (2) perceptions of bereavement support services as narrow in scope; (3) the "personal" character of bereavement and subsequent incompatibility with formalized support, and (4) issues around the timing and style of approaches to being offered support.Significance Of Results: Systematic pre-bereavement planning and careful communication about the services offered by palliative care bereavement support centers may improve receipt of support among bereaved family caregivers in need. [ABSTRACT FROM AUTHOR]

ABSTRACTObjective:Compassion fatigue, burnout, and vicarious traumatization are prominent topics in the current literature on the impact of the rewarding but challenging work of healthcare professionals who care for patients with life-limiting illnesses. The positive effects of caregiving constitute a newly emerging outcome that has been relatively unexplored in the pediatric literature, and yet they may play an important role in contributing to the satisfaction and well-being of the healthcare professionals who care for children who have a life-limiting illness.Method: This paper reports the results of a secondary analysis of qualitative interview transcripts that explored the experiences of hospital-based pediatric healthcare providers caring for children with varied life-limiting illnesses. In-depth qualitative interviews were conducted with 25 healthcare professionals (9 social workers, 8 nurses, and 8 physicians). The majority of participants were women (80%), with an age range between 20 and 60 years, and most (84%) had the experience of caring for more than 15 dying children. Thematic analysis was conducted using interpretive description and constant comparison.Results: Every healthcare professional interviewed experienced personal growth as a result of their providing care for dying children. Three dimensions of personal growth were most consistently reported: (1) new or altered life perspectives, (2) enhanced personal resources, and (3) benevolence.Significance Of Results: A deeper understanding of the phenomenon of personal growth could help healthcare organizations to implement innovative approaches that would counterbalance compassion fatigue, and thereby enhance both healthcare provider well-being and child and family outcomes. [ABSTRACT FROM AUTHOR]

Background: The COVID-19 pandemic disrupted many areas of life, including culturally accepted practices at end-of-life care, funeral rites, and access to social, community, and professional support. This survey investigated the mental health outcomes of Australians bereaved during this time to determine how these factors might have impacted bereavement outcomes. Methods: An online survey indexing pandemic and bereavement experiences, levels of grief, depression, anxiety, and health, work, and social impairment. Latent class analysis (LCA) was used to identify groups of individuals who shared similar symptom patterns. Multinomial regressions identified pandemic-related, loss-related, and sociodemographic correlates of class membership. Results: 1911 Australian adults completed the survey. The LCA identified four classes: low symptoms (46.8%), grief (17.3%), depression/anxiety (17.7%), and grief/depression/anxiety (18.2%). The latter group reported the highest levels of health, work, and social impairment. The death of a child or partner and an inability to care for the deceased due to COVID-19 public health measures were correlated with grief symptoms (with or without depression and anxiety). Preparedness for the person's death and levels of pandemic-related loneliness and social isolation differentiated all four classes. Unemployment was associated with depression/anxiety (with or without grief). Conclusions: COVID-19 had profound impacts for the way we lived and died, with effects that are likely to ricochet through society into the foreseeable future. These lessons learned must inform policymakers and healthcare professionals to improve bereavement care and ensure preparedness during and following future predicted pandemics to prevent negative impacts. [ABSTRACT FROM AUTHOR]

This paper examines some demographic and medical factors associated with the likelihood of residing in a care home during the last month of life for persons aged 70 and over in France and, if so, of remaining in the care home throughout or being transferred to hospital. The data are from the Fin de vie en France (End of Life in France) survey undertaken in 2010. During the last month of life, very old people are more likely to be living in a care home but are not less likely to be transferred to hospital. Medical conditions and residential trajectories are closely related. People with dementia or mental disorders are more likely to live in a care home and, if so, to stay there until they die. Compared to care homes, a more technical and medication-based approach is taken in hospitals and care home residents who are transferred to hospital more often receive medication while those remaining in care homes more often receive support from a psychologist. In hospitals as in care homes, few older persons had recourse to advance directives and hospice programmes were not widespread. Promoting these two factors may help to increase the quality of end of life and facilitate an ethical approach to end-of-life care. [ABSTRACT FROM PUBLISHER]

Objective: Sleep disturbances are a common issue for those who provide informal care to someone with a life-limiting condition. The negative consequences of poor sleep are well documented. The purpose of the present study was to determine the sleep patterns of caregivers of patients with advanced cancer.Method: An extensive systematic review of studies reporting empirical sleep data was undertaken in 2015 in accordance with the PRISMA Statement. A total of eight electronic databases were searched, with no date restrictions imposed. Additionally, a search of the bibliographies of the studies identified during the electronic search was conducted. Search terms included: "sleep," "insomnia," "sleep disturbance," "circadian rhythm," "caregiver," "carer," "advanced cancer," "palliative cancer," and MESH suggestions. The inclusion criteria required studies to be in English and to report primary qualitative and/or quantitative research that examined sleep in caregivers of patients with advanced cancer. Unpublished studies, conference papers, and dissertations were excluded.Results: Overall, 10 studies met the inclusion criteria and were included in the review. Two major findings emerged from the data synthesis. First, at least 72% of caregivers reported moderate to severe sleep disturbance as measured by the Pittsburgh Sleep Quality Index. Second, objective measurement of caregivers' sleep identified that some caregivers experienced up to a 44% reduction in their total sleep time compared to the recommended eight hours.Significance Of Results: Reduction in total sleep time appears to be the biggest issue facing caregivers' sleep. Future studies need to explore the specific factors that cause these sleep disturbances and thus help to identify interventions to optimize sleep. [ABSTRACT FROM AUTHOR]

Objective: The formation of a strong bond between patients and therapists can lead to successful treatment outcomes. Yet, little is known about the mechanisms that function to control this relationship. The objective of this case report was to examine the ruptures and repairs in the working alliance between a young therapist and an elderly caregiver, and to suggest ways in which to deal with age-related challenges to such an alliance.Method: In order to examine the ruptures and repairs in a working alliance, this case report reflects on the interdependent relationship among therapist variables, patient variables, and the therapeutic alliance. The clinical experience presented describes a newly educated psychologist's struggles to overcome the challenges in forming a strong working alliance with an elderly dying cancer patient's spouse. The spouse was enrolled in the DOMUS study (Clinicaltrials.gov: NTC01885637), an ongoing randomized controlled trial of a patient-and-caregiver intervention for facilitating the transition from an oncology ward to palliative at-home care, and then bereavement. As part of the DOMUS study, the patient and spouse received a psychological intervention based on existential-phenomenological therapy.Results: A therapist's therapeutic approach to breaking down age-related barriers to communication matters greatly. The existential-phenomenological method of epoché offers a way to effectively address ruptures and repairs in a working alliance, as it enhances the therapist's openness to learning. In addition, the insights of senior supervisors can promote a therapist's openness to learning.Significance Of Results: In conclusion, the method of epoché benefits the working alliance in several ways, as it enhances personal insight and provides methods for repairing an alliance. The reflections in this paper may be applied to clinical settings in oncology, gerontology, and palliative care, which are likely to be of great interest to young clinicians experiencing age-related challenges in their daily work. [ABSTRACT FROM AUTHOR]

Objective: Conducting research with the bereaved presents an immediate ethical challenge, as they are undoubtedly a vulnerable group, associated with high levels of distress and susceptible to both physical and mental health issues. A comprehensive understanding of the potential therapeutic benefits for bereaved relatives participating in palliative care research is limited, and therefore the ethics of engaging this group remain questionable.Method: This paper describes a secondary analysis of qualitative data collected in the Care of the Dying Evaluation (CODE) project, examining the experiences of patients who died at home. It explores the motivations and potential benefits for bereaved relatives participating in research with reference to the recently developed concepts in bereavement theory. Cognitive interviews were conducted with 15 bereaved relatives and secondary analysis using a content analysis framework was employed to classify the data.Results: The results center around six recurring concepts identified as adaptive in current bereavement theory: an opportunity to share the narrative accounts of the final hours of their relative's life; a search for sense and meaning in loss; an ongoing bond/attachment with the deceased; altruistic motivations; oscillation between loss and restorative orientations; and a sense of resilience. Overall, the participants found that taking part in the research was valuable and that it could be described as offering therapeutic benefits.Significance Of Results: The need for bereaved relatives to take part in research studies should be encouraged, as they provide an accurate proxy for the patient's experience of end-of-life care while also providing a valuable account of their own perspective as family member and carer. In addition, we highlight the need for ethics committees to be aware of the potential benefits for bereaved relatives participating in research of this kind. [ABSTRACT FROM AUTHOR]

Objective: A systematic review was conducted in order to explore the effectiveness of communication-skills training interventions in end-of-life care with noncancer acute-based healthcare staff.Method: Articles were included if they (1) focused on communication-skills training in end-of-life/palliative care for noncancer acute-based staff and (2) reported an outcome related to behavior change with regard to communication. Sixteen online databases were searched, which resulted in 4,038 potential articles. Screening of titles left 393 articles that met the inclusion criteria. Abstracts (n = 346) and full-text articles (n = 47) were reviewed, leaving 10 papers that met the criteria for our review. All articles explored the effect of communication-skills training on aspects of staff behavior; one study measured the effect on self-efficacy, another explored the impact on knowledge and competence, and another measured comfort levels in discussing the end of life with patients/families. Seven studies measured a number of outcomes, including confidence, attitude, preparedness, stress, and communication skills.Results: Few studies have focused on end-of-life communication-skills training in noncancer acute-based services. Those that do have report positive effects on staff behavior with regard to communication about the end of life with patients and families. The studies varied in terms of the population studied and the health services involved, and they scored only moderately or weakly on quality. It is a challenge to draw a definite conclusion about the effectiveness of training interventions in end-of-life communication because of this. However, the findings from our review demonstrate the potential effectiveness of a range of training interventions with healthcare professionals on confidence, attitude, self-efficacy, and communication skills.Significance Of Results: Further research is needed to fully explore the effectiveness of existing training interventions in this population, and evidence using objective measures is particularly needed. Ideally, randomized controlled trials or studies using control groups and longer follow-ups are needed to test the effectiveness of interventions. [ABSTRACT FROM AUTHOR]

There is a growing body of literature documenting the positive effects of both religiousness and spirituality on human health, particularly among those who are ageing or diagnosed with a life-limiting illness. These positive effects provide buffers to life's stressors such as those associated with mental illness, care-giver burden, substance abuse and social disruption resulting from war. An important aspect of health care for individuals of all ages involves completion of a spiritual assessment. This paper explores the concept of spirituality and spiritual assessment, which has many definitions in the literature, and also provides examples of assessment tools from theology, nursing, social work and medicine. [ABSTRACT FROM PUBLISHER]

Objective: The objective of this conceptual paper was to present important constructs in attachment theory as they apply to parent and caregiver behavior in pediatric palliative care. Clarification of these constructs is provided with specific reference to their clinical application as well as their reflection in current empirical literature. Social attachment theory is proposed as a developmentally contextual model for the study of parenting in pediatric palliative and end-of-life care.Method: A comprehensive search was conducted of pertinent literatures. These included classic as well as recent theory and research in attachment theory in addition to the empirical literatures on parent and family experience in pediatric palliative care, serious illness, and beyond to parental bereavement. Other relevant literature was examined with respect to the phenomena of concern.Results: The empirical literature in pediatric palliative care supports the use of central concepts in attachment theory as foundational for further inquiry. This is evidenced in the emphasis on the importance of parental protection of the child, as well as executive activities such as decision making and other prominent parental operations, parental psychological resolution of the child's diagnosis and illness as well as coping and meaning making, and the core significance of parental relationships with providers who provide secure-base and safe-haven functions.Significance Of Results: The promise for developing integrated, conceptually based interventions from construction through implementation is of urgent importance to children and families receiving pediatric palliative care services. Focusing on key parental behaviors and processes within the context of a well-studied and contextually appropriate model will inform this task efficiently. The attachment paradigm meets these criteria and has promise in allowing us to move forward in developing well-defined, inclusive, and conceptually grounded protocols for child and family psychosocial research, practice, and education in this specialty. [ABSTRACT FROM AUTHOR]

Objective: Despite the availability of palliative care in many countries, legalization of euthanasia and physician-assisted suicide (EAS) continues to be debated-particularly around ethical and legal issues--and the surrounding controversy shows no signs of abating. Responding to EAS requests is considered one of the most difficult healthcare responsibilities. In the present paper, we highlight some of the less frequently discussed practical implications for palliative care provision if EAS were to be legalized. Our aim was not to take an explicit anti-EAS stance or expand on findings from systematic reviews or philosophical and ethico-legal treatises, but rather to offer clinical perspectives and the potential pragmatic implications of legalized EAS for palliative care provision, patients and families, healthcare professionals, and the broader community.Method: We provide insights from our multidisciplinary clinical experience, coupled with those from various jurisdictions where EAS is, or has been, legalized.Results: We believe that these issues, many of which are encountered at the bedside, must be considered in detail so that the pragmatic implications of EAS can be comprehensively considered.Significance Of Results: Increased resources and effort must be directed toward training, research, community engagement, and ensuring adequate resourcing for palliative care before further consideration is given to allocating resources for legalizing euthanasia and physician-assisted suicide. [ABSTRACT FROM AUTHOR]

Objective: Caregiving partners constitute a unique group, who provide both physical and emotional care for patients. There has been extensive research conducted on caregivers during either the caregiving or bereavement phase; however, these phases are often treated as separate entities rather than as part of a continuum.Method: In this paper, utilizing relevant literature and clinical observations, we map the emotional journey and lived experience of caregivers moving from disease progression, to the end of life, to the dying process itself, and then through life after the death of a partner. Along this journey, we identify the links between pre-death caregiving and bereavement.Results: Our illustration raises awareness regarding the unmet needs experienced by caregiving partners across the continuum and provides an alternative framework through which clinicians can view this course.Significance: of Results We bolster arguments for improved palliative care services and early interventions with distressed caregiving partners by emphasizing continuity of care both before and after a patient's death. [ABSTRACT FROM AUTHOR]

Objectives: Social work is considered to be a key player in Hospice and Palliative Care. To prove this claim, the Social Worker Task Force within the European Association for Palliative Care (EAPC) decided to carry out a survey. The aim of this survey was to generate basic data and thus to create a basis for further development of Palliative Care Social Work (PCSW) in Europe.Method: The online survey consisted of two parts: in Part 1, the 57 collective members of the EAPC were asked to fill in an online questionnaire containing questions about basic data. In Part 2, individual Palliative Care Social Workers (SWs) from all over Europe were asked to fill in another questionnaire with a focus on the basic conditions concerning their jobs as well, as on their tasks and roles.Results: Thirty-two collective members of the EAPC completed the online questionnaire. SWs can be found in all of the Palliative Care settings, but there are considerable differences between the countries concerning the prevalence of SWs. Only five countries (20%) reported specialized qualification training in PCSW and just around half of the responding SWs had such a specialized training. The responding SWs (n = 360) were quite content with their working conditions. Tasks concerning patient and family and tasks concerning the interprofessional team were most prominent. There is a significant role overlap with other professions.Significance Of Results: The study reveals a very mixed picture of PCSW in Europe. This could be due to the high adaptability of social work, which is to be as flexible as possible to the needs of its clients. However, significant patterns, similarities, and differences emerge. The present study may, therefore, serve as a basis for further in-depth studies. [ABSTRACT FROM AUTHOR]

BackgroundPalliative cancer care is by definition multi-professional in nature. An interdisciplinary approach to disease management emphasising continuity of care results in increased quality of life for patients and families. Complex disease management demands the provision of a full spectrum of high-quality care; requiring both specialist and generalist services. Appointed keyworkers are knowledgeable about patient preferences enabling effective coordination of care and promotes collaborative team-working. The need for diversity in the provision of palliative care is recommended but can challenge effective interdisciplinary collaboration by creating tension and limiting the interdisciplinary team (IDT) from reaching its full potential resulting in adverse outcomes.PurposeThe purpose of this paper is to review the literature available regarding how IDTs and keyworkers influence high-quality palliative care; evaluate how professional culture barriers can influence team collaboration; discuss the keyworker role in minimising these barriers and clinical implications.MethodologyA review of the English literature from 2003 to 2013 was performed using the databases PubMed (NML), OVID Medline and Google Scholar.Results and conclusionKeyworkers can help overcome professional culture barriers that result from ineffective team communication. Facilitating improved communication regarding professional roles fosters mutual understanding among team members. The dissemination of relevant and timely information minimises fragmentation, prompting team decision-making and promotes continuity of high-quality palliative care. [ABSTRACT FROM AUTHOR]

Objective: The importance of palliative care education for nurses has been recognized worldwide. The study aims to explore the experiences of nurses working with children with palliative care needs and to identify any related educational needs.Methods: The electronic databases of CINAHL, Cochrane, PubMed, OVID, Social Care Online, Web of Science, Scopus, and ProQuest were searched for the period 2000-2015.Results: Finding revealed that working with children with palliative care needs is an emotionally struggling job for nurses, especially when they try to manage the transition of pediatric patients from curative to palliative care. Staffing level and time constraints comprise a major obstacle in pediatric palliative care. Focusing on invasive treatment and technology in spite of the feelings that it will not improve patients' health status intensifies the feeling of guilt and helplessness for nurses. Finally, nurses asserted the importance of receiving pediatric palliative care education, especially how to communicate with children with palliative care needs and their families.Significance Of Results: Further research is recommended with regard to nurses' experience in communication with children with palliative care needs. Nursing education in pediatric palliative care is significantly important, especially how to communicate with children with palliative care needs and their families. [ABSTRACT FROM AUTHOR]

BackgroundPatients require information to make informed decisions and consent to medical treatment. Shared decision making (SDM) is a methodology that promotes a patient-centred approach to informed consent and demonstrates respect for autonomyPurposeThe purpose of this paper is to critically review the legal and ethical issues relevant to Canadian and UK informed consent and SDM practices and how these processes relate to current palliative care practices, with a particular emphasis on radiation therapy.MethodologyA review of the English literature from 2003 to 2013 was performed using the databases PubMed (NML), OVID Medline and Google Scholar.Results and ConclusionsThe literature identifies that palliative cancer patients desire the opportunity to be involved with decision-making discussions, which has shown to increase knowledge and result in better health-related outcomes. However, ethical and legal issues regarding the practicality of including this patient population in SDM discussions raises questions about validity of consent. For SDM to be considered a valid methodology to obtain informed consent, open and honest communication between the patient and multidisciplinary team is essential. Treatment options for palliative cancer patients are often complex and SDM allows healthcare professionals and patients to exchange information and negotiate feasible treatment options based on medical expertise and patient preferences.Legal frameworks have defined current standards of practice for various healthcare professions, including radiation therapy. Radiation therapists, as members of the multidisciplinary team, are currently key contributors in providing information to patients regarding the radiotherapy process. Individuals working within advanced practice roles have the ability to develop skills once considered to be within medical domains and have begun to incorporate the delegated act of obtaining informed consent into practice which has shown to increase professional autonomy, accountability and improves patient-centred care. [ABSTRACT FROM AUTHOR]

This critique of the term ‘carer’ argues that, although developed as a result of well-intentioned and socially-engaged research, it fails the people with whom it is most concerned, that is ‘carers’ and those who are cared for. The paper considers the historical and political development of the term ‘carer’ before examining research in various ‘carer’-related settings in the United Kingdom, namely mental health, physical and intellectual impairment, cancer and palliative care and older adulthood and dementia. The article concludes that the term ‘carer’ is ineffective and that its continued use should be reconsidered. This conclusion is based on the consistent failure of the term ‘carer’ as a recognisable and valid description of the relationship between ‘carers’ and those for whom they care. Furthermore, use of the term may imply burden and therefore devalue the individual who is cared for and in this way polarises two individuals who would otherwise work together. Consequently, this commentary suggests that descriptions of the caring relationship that focus on the relationship from which it arose would be both more acceptable and useful to those it concerns. Furthermore, a more accessible term may increase uptake of support services currently aimed at ‘carers’, therefore inadvertently meeting the original aims of the term, that is, to increase support for ‘carers’. [ABSTRACT FROM PUBLISHER]

Aim: To explore (1) experiences of primary care physicians (PCPs) and oncological medical specialists about providing care to patients living longer with incurable cancer, and (2) their preferences concerning different care approaches (palliative support, psychological/survivorship care support). Background: At present, oncological medical specialists as well as PCPs are exploring how to improve and better tailor care to patients living longer with incurable cancer. Our previous study at the in-patient oncology unit showed that patients living longer with incurable cancer experience problems in how to deal with a prognosis that is insecure and fluctuating. To date, it could be argued that treating these patients can be done with a 'palliative care' or a 'survivorship/psychosocial care' approach. It is unknown what happens in actual medical practice. Methods: We performed multidisciplinary group meetings: 6 focus groups (3 homogenous groups with PCPs (n = 15) and 3 multidisciplinary groups (n = 17 PCPs and n = 6 medical specialists) across different parts of the Netherlands. Qualitative data were analysed with thematic analysis. Findings and conclusions: In the near future, PCPs will have an increasing number of patients living longer with incurable cancer. However, in a single PCP practice, the experience with incurable cancer patients remains low, partly because patients often prefer to stay in contact with their medical specialist. PCPs as well as medical specialists show concerns in how they can address this disease phase with the right care approach, including the appropriate label (e.g. palliative, chronic, etc.). They all preferred to be in contact early in the disease process, to be able to discuss and take care for the patients' physical and psychological well-being. Medical specialists can have an important role by timely referring their patients to their PCPs. Moreover, the disease label 'chronic' can possibly assist patients to live their life in the best possible way. [ABSTRACT FROM AUTHOR]

Canada is six years into a new era of legalized medical assistance in dying (MAiD). The law continues to evolve, following a pattern in which Canadian courts rule that legal restrictions on eligibility for MAiD are unconstitutional and Parliament responds by gradually expanding eligibility for MAiD. The central tension underlying this dialogue between courts and government has focused on two conceptions of how to best promote and protect the interests of people who are vulnerable by virtue of intolerable and irremediable suffering due to an illness, disease, or disability. Do we, as a society, have a duty to protect vulnerable people from seeking certain medical procedures that are contrary to their interests, as those are perceived by others? Or do we have a duty to uphold their rights to autonomy, including the right to make choices within a range that may be constrained by many factors, some of which may be socially unjust? This is a recurrent problem in bioethics and medical law, which we explore through the lens of how Canadian courts and Parliament have grappled with defining eligibility for MAiD. [ABSTRACT FROM AUTHOR]

Introduction: Radiation-induced nausea and vomiting (RINV) is a common side effect of single fraction palliative radiotherapy. Patients experiencing RINV have significantly reduced quality of life and a prescription of prophylactic antiemetics, principally 5-HT3 antagonists, is recommended. There is a growing body of evidence relating to indications for this, but as yet there are no national guidelines. Methods: A retrospective audit aimed to determine the extent to which patients at high and moderate emetogenic risk receiving single fraction radiotherapy were prescribed prophylactic emetic medication in line with the current evidence base. Results: A total of 60 patients were included in the audit; of these patients, 50 were consented for the risk of nausea and/or vomiting. Prophylactic antiemetics were only prescribed to 28 (46·7%) of all audited patients. Out of the 50 patients who provided informed consent, only 24 (48%) were prescribed an antiemetic prior to their treatment. Conclusion: Antiemetic prescribing for single fraction patients at moderate to high emetogenic risk at a large regional centre is underutilised in relation to published evidence. Amended guidance and further audits are recommended to ensure that this patient group is best supported. [ABSTRACT FROM AUTHOR]

Objective: Israel serves as a case study for understanding the importance of undergraduate palliative care (PC) education in implementing, developing, and enabling access to palliative care services. This article presents the findings collected from the five medical schools.Method: This qualitative study supported by a survey explores and describes the state of undergraduate PC education at medical schools in Israel. The survey included questions on voluntary and mandatory courses, allocation of different course models, teaching methods, time frame, content, institutions involved, and examinations. Semi-structured interviews with teaching faculty were conducted at the same locations.Results: Eleven expert interviews and five surveys demonstrate that PC is taught as a mandatory subject at only two out of the five Israeli universities. To enhance PC in Israel, it needs to become a mandatory subject for all undergraduate medical students. To teach communication, cultural safety, and other basic competencies, new interactive teaching forms need to be developed and adapted. In this regard, nationwide cooperation is proposed. An exchange between medical schools and university clinics is seen as beneficial. The new generation of students is open to PC philosophy and multidimensional care provision but resources to support their growth as professionals and people remain limited.Significance Of Results: This study underlines the importance of teaching in PC at medical schools. Undergraduate education is a central measure of PC status and should be used as such worldwide. The improvement of the teaching situation would automatically lead to a better practical implementation for the benefit of people. Medical schools should cooperate, as the formation of expertise exchange across medical schools would automatically lead to better PC education. [ABSTRACT FROM AUTHOR]

Objective: The entire family is affected when a parent is severely ill. Parents often need and appreciate professional support when talking to children about illness and death. The family talk intervention (FTI) is family-centered and intends to promote communication about the illness and its consequences, support parenting to enhance family coping and help family members share experiences with each other to create a shared family history. This study aimed to explore potential effects of FTI in specialized palliative home care, as reported by parents.Method: This pre-post test intervention pilot was conducted in specialized palliative home care. A convergent mixed-method design was used to analyze interview and questionnaire data. Twenty families with dependent children were recruited from two specialized palliative home care units in Stockholm, Sweden.Results: Parents reported that family communication improved after participation in FTI as family members learned communication strategies that facilitated open sharing of thoughts and feelings. Increased open communication helped family members gain a better understanding of each other's perspectives. Parents reported that relationships with their partner and children had improved as they now shared several strategies for maintaining family relationships. Parents were also less worried following participation in FTI. The ill parents stated that they gained a sense of security and were less worried about the future.Significance Of Results: This study adds to the evidence that FTI may be a useful intervention for families with dependent children and an ill parent in a palliative care setting. This trial is registered at ClinicalTrials.gov Identifier NCT03119545. [ABSTRACT FROM AUTHOR]

Objectives: Dignity therapy (DT) is a brief, individualized intervention, which provides terminally ill patients with an opportunity to convey memories, essential disclosures, and prepare a final generativity document. DT addresses psychosocial and existential issues, enhancing a sense of meaning and purpose. Several studies have considered the legacy topics most frequently discussed by patients near the end of life. To date, no Portuguese study has done that analysis.Method: We conducted a qualitative analysis of 17 generativity documents derived from a randomized controlled trial (RCT). Inductive content analysis was used to identify emerging themes.Results: From the 39 RCT participants receiving DT, 17 gave consent for their generativity document to undergo qualitative analysis. Nine patients were female; mean age of 65 years, with a range from 46 to 79 years. Seven themes emerged: "Significant people and things"; "Remarkable moments"; "Acknowledgments"; "Reflection on the course of life"; "Personal values"; "Messages left to others"; and "Requests and last wishes".Significance Of Results: Generativity document analysis provides useful information for patients nearing death, including their remarkable life moments and memories, core values, concerns, and wishes for their loved ones. Being conscious of these dominant themes may allow health providers to support humanized and personalized care to vulnerable patients and their families, enhancing how professionals perceive and respond to personhood within the clinical setting. [ABSTRACT FROM AUTHOR]

Objective: Inadequate deliberation processes about ethical problems occurring in palliative care settings may negatively impact both patients and healthcare professionals. Better knowledge of the palliative care professionals' practices regarding such processes could help identify specific education needs to improve the quality of palliative care in the context of complex ethical situations. Therefore, this descriptive study aimed to (1) examine ethical deliberation processes in interprofessional teams in five palliative care settings; (2) identify organizational factors that constrain such processes; and (3) based on this knowledge, identify priority education needs for future and current palliative care professionals.Method: The study involved three data collection activities: (1) direct observation of simulated interprofessional ethical deliberations in various palliative care settings; (2) individual semi-structured interviews; and (3) deliberative dialogues.Results: Thirty-six healthcare professionals took part in the simulated ethical deliberations and in the deliberative dialogue activities, and 13 were met in an individual interview. The study results revealed suboptimal interprofessional collaboration and ethical deliberation competencies, particularly regarding awareness of the ethical issue under consideration, clarification of conflicting values, reasonable decision making, and implementation planning. Participants also reported facing serious organizational constraints that challenged ethical deliberation processes.Significance Of Results: This study confirmed the need for professional education in interprofessional collaboration and ethical deliberation so that palliative care professionals can adequately face current and future ethical challenges. It also enabled the identification of educational priorities in this regard. Future research should focus on identifying promising educational activities, assessing their effectiveness, and measuring their impact on patient and family experience and the quality of palliative care. [ABSTRACT FROM AUTHOR]

Background: Preserving personal dignity is an important aim of palliative care. Little is known about how physicians perceive and preserve dignity of patients from non-western migration backgrounds. Insight in this is important given the increased demand for culturally sensitive palliative care.Aim: To gain insight in how Dutch physicians perceive and preserve dignity in the last phase of life for patients from non-western migration backgrounds.Design: Qualitative thematic analysis of semi-structured interviews.Participants: Fifteen physicians experienced in palliative care.Results: Physicians experienced dilemmas in preserving dignity of non-western patients in three situations: (a) relief of suffering in the terminal phase, (b) termination of interventions and treatment, and (c) disclosure of diagnosis. Physicians wanted to grant the needs of patients in the last phase of their lives, which was central to physicians' view on dignity, but dilemmas arose when this conflicted with physicians' other personal and professional values. To make the dilemmas manageable, physicians assessed whether needs of patients were authentic, but due to linguistic, cultural, and communication barriers, this was difficult with non-western patients. To find a way out of the dilemmas, physicians had three strategies: accept and go along with patient's wishes, convince or overrule the patient or family, or seek solutions that were acceptable for all.Conclusions: Physicians encounter dilemmas providing palliative care for people from non-western backgrounds. Future physicians can be trained in connective strategies and seeking middle grounds to optimally preserve patients' dignity while being in concordance with their personal and professional values. [ABSTRACT FROM AUTHOR]

Objective: Considering the risk of spiritual distress among terminally ill patients, experts long agree that spiritual care has to be an integral component of palliative care. Despite this consensus, the role of spirituality among family caregivers remains largely unexplored. We aimed to describe how spirituality manifests in the lived experience of family caregivers (FCs) in a palliative care context.Method: As part of a secondary analysis, data derived from two qualitative primary studies on FCs' burdens and needs in the context of caring for a patient with a diagnosis of incurable cancer. Previously transcribed interviews were examined by means of a thematic analysis, transcending the focus of the primary studies to examine how spirituality arises and/or persists in the life of FCs from the time of diagnosis of incurable cancer up until bereavement.Results: Twenty-nine narratives were explored and all included spirituality as a relevant theme. Analysis revealed four aspects associated with the presence of spirituality among FCs' experiences: "Connectedness," "Religious Faith," "Transcendence," "Hope," and a fifth overarching aspect which we named "Ongoing integration of spiritual experience." Spirituality appeared as a multilayered phenomenon and was shaped individually among FCs' narratives.Significance Of Results: In view of the results, exploring and discussing spirituality and underlying experiences in the situation as an FC seems likely to widen the perspective on FCs' problems and needs. Further research on spiritual needs among FCs of patients with incurable life-limiting cancer is deemed necessary. [ABSTRACT FROM AUTHOR]

Objective: Telephone availability is integrated into our home-based palliative care team (HPCT) with the aim of helping terminally ill patients and their caregivers alleviate their physical and psychosocial suffering, in addition to the team's home visits. We aimed to compare the differences between non-callers (patients with no phone calls during the team's follow-up period) vs. callers (≥1 phone call during the team's follow-up period) across sociodemographic, clinical, physical, and psychosocial variables.Method: Retrospective analysis of all patients with and without phone call entries registered in our anonymized database, from October 2018 to September 2020.Results: We analyzed 389 patients: 58% were male, and the average age was 71 years old; 84% had malignancies, with a mean palliative performance status of 45%. The majority of patients (n = 281, 72%) made at least one phone call to HPCT. On average, a mean of 2.5 calls (SD = 3.61; range: 0-26) per patient was registered. Callers compared with non-callers more frequently lived with someone (p = 0.030), preferred home as a place to die (p = 0.039), had more doctor (p = 0.010) and nurse home visits (p = 0.006), a prolonged HPCT follow-up time (p = 0.053), along with more frequent emergency room visits (p < 0.001) and hospitalizations (p = 0.043). Moreover, those who made at least one phone call to the HPCT had a higher frequency of conspiracy of silence (p = 0.046), anxiety (p = 0.044), and lower palliative performance status (p = 0.001). No statistically significant associations or differences were found for the other variables.Significance Of Results: Several factors seem to correlate with an increased number of phone calls, and physical suffering does not play a relevant role in triggering contacts, in contrast with psychosocial and other clinical factors. [ABSTRACT FROM AUTHOR]

In England, processes of regulation and inspection have been established to ensure that older people living in long-term care settings receive quality care. This paper describes how dying and death in care homes for older people is regulated and inspected. A documentary analysis was undertaken of the standard that addresses dying and death in the 2001 Care Homes for Older People: National Minimum Standards. Present in the standard is a 'good death' template drawn from constructions of best practice in palliative care. The way in which this national standard is enacted in the inspection process is described using a content analysis of the inspection reports from 226 care homes for older people. These present a narrow focus on dying and death, one that emphasises the older person's wishes and the degree of adherence to policies and procedures concerned with the dying and death event. A regulated death attenuates the 'good death' template and reflects both the inspection process and capabilities of the residents of care homes. If the regulation and inspection process is to integrate dying with living, a broader conception and regime of inspection is required. Only then will end-of-life care be provided that meets the diverse needs of older people who live in care homes. [ABSTRACT FROM AUTHOR]

Aim: To explore the extent to which national policy in end-of-life care (EOLC) in England influences and guides local practice, helping to ensure that care for older people at the EOL is of a consistently good quality. Background: Whilst policy is recognised as an important component in determining the effectiveness of EOLC, there is scant literature which attempts to interrogate how this happens or to hypothesise the mechanisms linking policy to better outcomes. Method: This article reports on the second phase of a realist evaluation comprising three case studies of clinical commissioning groups, including 98 in-depth interviews with stakeholders, meeting observation and documentary analysis. Findings: This study reveals the key contextual factors which need to be in place at micro, meso and macro levels if good quality EOLC for older people is to be achieved. The findings provide insight into rising local inequalities and reveal areas of dissonance between stakeholder priorities. Whilst patients privilege the importance of receiving care and compassion in familiar surroundings at EOL, there remains a clear tension between this and the medical drive to cure disease and extend life. The apparent devaluing of social care and subsequent lack of resource has impacted significantly on the way in which dying is experienced. Patient experience at EOL, shaped by the care received both formally and informally, is driven by a fragmented health and social care system. Whilst the importance of system integration appears to have been recognised, significant challenges remain in terms of shaping policy to adequately reflect this. This study highlights the priority attached by patients and their families to the social and relational aspect of death and dying and shines a light on the stark disparities between the health and social care systems which became even more evident at the height of the Covid-19 pandemic. [ABSTRACT FROM AUTHOR]

Objective: Dignity therapy (DT) is a kind of psychotherapy that identifies the main concerns of end-of-life patients that affect their perception of dignity and helps them to find a new meaning in life. Most prior studies on DT analyze outcomes for palliative care patients. The aim of this systematic review is to explore the outcomes of DT in palliative care patients' family members.Method: In June 2020, a bibliographic search was performed using the terms "Dignity Therapy" and "Palliative Care" in the following databases: Cochrane library, TRIP database, PUBMED, Scopus, and Web of Knowledge. Of the 294 articles found, 8 met the selection criteria and were considered in the present study. No articles were excluded based on their publication date.Results: Family members generally believe that DT helps them to better prepare the patient's end-of-life and overcome the bereavement phase. The legacy document was considered a source of comfort, and most would recommend DT to other people in their situation. DT is generally considered as important as any other aspect of the patient's treatment.Significance Of Results: There is evidence of the benefits of DT for palliative patients' family members. However, there are still few studies that evaluate these outcomes. The existing evidence is poorly generalized, and thus, further studies are needed to deeply explore the benefits of this therapy both for patients and their families. [ABSTRACT FROM AUTHOR]