Terminal Lucidity in a Pediatric Oncology Clinic.

ABSTRACT: The sporadic occurrence of unusually enhanced mental clarity before death has been documented over time and cultures, and reported in patients with and without neurodegenerative diseases, psychiatric disorders, and other neurocognitive deficits, as well as those with nonterminal and terminal conditions. Using a purposive sampling method via existing professional networks, clinical presentations of terminal lucidity in pediatric populations, as witnessed by pediatric oncologists and medical personnel, were solicited. We document clinical presentations suggestive of terminal lucidity in children, which were compiled by their attending physician at two large tertiary pediatric hospitals. Unanticipated and unexplained changes in mental clarity, verbal communication, and/or physical capability in the days and hours before the death of the pediatric patients were observed. Each patient's medical condition should not have allowed for such changes. The phenomenon known as terminal lucidity provides a conceptual framework for these deviations, although more systematic documentation and clinical research is required before definitive conclusions can be drawn.

How compassionate communities are implemented and evaluated in practice: a scoping review.

BACKGROUND: Compassionate communities are rooted in a health promotion approach to palliative care, aiming to support solidarity among community members at the end of life. Hundreds of compassionate communities have been developed internationally in recent years. However, it remains unknown how their implementation on the ground aligns with core strategies of health promotion. The aim of this review is to describe the practical implementation and evaluation of compassionate communities. METHODS: We undertook a scoping review of the empirical peer-reviewed literature on compassionate communities. Bibliographic searches in five databases were developed with information specialists. We included studies in English describing health promotion activities applied to end-of-life and palliative care. Qualitative analysis used inductive and deductive strategies based on existing frameworks for categorization of health promotion activities, barriers and facilitators for implementation and evaluation measures. A participatory research approach with community partners was used to design the review and interpret its findings. RESULTS: Sixty-three articles were included for analysis. 74.6% were published after 2011. Health services organizations and providers are most often engaged as compassionate community leaders, with community members mainly engaged as target users. Adaptation to local culture and social context is the most frequently reported barrier for implementation, with support and external factors mostly reported as facilitators. Early stages of compassionate community development are rarely reported in the literature (stakeholder mobilization, needs assessment, priority-setting). Health promotion strategies tend to focus on the development of personal skills, mainly through the use of education and awareness programs. Few activities focused on strengthening community action and building healthy public policies. Evaluation was reported in 30% of articles, 88% of evaluation being analyzed at the individual level, as opposed to community processes and outcomes. CONCLUSIONS: The empirical literature on compassionate communities demonstrates a wide variety of health promotion practices. Much international experience has been developed in education and awareness programs on death and dying. Health promotion strategies based on community strengthening and policies need to be consolidated. Future research should pay attention to community-led initiatives and evaluations that may not be currently reported in the peer-review literature.

What sources of bereavement support are perceived helpful by bereaved people and why? Empirical evidence for the compassionate communities approach.

AIMS: To determine who provides bereavement support in the community, what sources are perceived to be the most or least helpful and for what reason, and to identify the empirical elements for optimal support in developing any future compassionate communities approach in palliative care. DESIGN: A population-based cross-sectional investigation of bereavement experiences. Sources of support (informal, community and professional) were categorised according to the Public Health Model of Bereavement Support; most helpful reasons were categorised using the Social Provisions Scale, and least helpful were analysed using inductive content analysis. SETTING AND PARTICIPANTS: Bereaved people were recruited from databases of funeral providers in Australia via an anonymous postal survey (2013-2014). RESULTS: In total, 678 bereaved people responded to the survey. The most frequently used sources of support were in the informal category such as family, friends and funeral providers. While the professional category sources were the least used, they had the highest proportions of perceived unhelpfulness whereas the lowest proportions of unhelpfulness were in the informal category. The functional types of helpful support were Attachment, Reliable Alliance, Social Integration and Guidance. The five themes for least helpful support were: Insensitivity, Absence of Anticipated Support, Poor Advice, Lack of Empathy and Systemic Hindrance. CONCLUSION: A public health approach, as exemplified by compassionate communities policies and practices, should be adopted to support the majority of bereaved people as much of this support is already provided in informal and other community settings by a range of people already involved in the everyday lives of those recently bereaved. This study has provided further support for the need to strengthen the compassionate communities approach, not only for end of life care for dying patients but also along the continuum of bereavement support.

The impact of a new public health approach to end-of-life care: A systematic review.

BACKGROUND: Communities play an increasingly significant role in their own health and social care, and evidence demonstrates the positive impact of this work on a range of health outcomes. Interest is building regarding the application of the principles of the new public health approach to those facing the end of life and their families and communities. AIM: To review the evidence relating to the impact of a new public health approach to end-of-life care, specifically as this applies to efforts to strengthen community action. DESIGN: A systematic review employing narrative synthesis. Both meta-ethnography and the use of descriptive statistics supported analysis. DATA SOURCES: Eight databases (AMED, ASSIA, BiblioMap, CINAHL, Cochrane Reviews, EMBASE, MEDLINE and PsycINFO) were searched from the earliest record to March 2015 using set eligibility criteria. RESULTS: Eight articles were included in the analysis. Three main themes emerged from the meta-ethnography: making a practical difference, individual learning and personal growth and developing community capacity. The quantitative findings mapped to the meta-ethnography and demonstrated that engaging communities can lead to improved outcomes for carers such as decreased fatigue or isolation, increase in size of caring networks and that wider social networks can influence factors such as place of death and involvement of palliative care services. CONCLUSION: Evidence exists for the impact of community engagement in end-of-life care. Impact assessment should be an integral part of future initiatives and policy makers should recognise that these approaches can influence complex issues such as carer support, community capacity, wellbeing and social isolation.

INSPIRE (INvestigating Social and PractIcal suppoRts at the End of life): Pilot randomised trial of a community social and practical support intervention for adults with life-limiting illness.

BACKGROUND: For most people, home is the preferred place of care and death. Despite the development of specialist palliative care and primary care models of community based service delivery, people who are dying, and their families/carers, can experience isolation, feel excluded from social circles and distanced from their communities. Loneliness and social isolation can have a detrimental impact on both health and quality of life. Internationally, models of social and practical support at the end of life are gaining momentum as a result of the Compassionate Communities movement. These models have not yet been subjected to rigorous evaluation. The aims of the study described in this protocol are: (1) to evaluate the feasibility, acceptability and potential effectiveness of The Good Neighbour Partnership (GNP), a new volunteer-led model of social and practical care/support for community dwelling adults in Ireland who are living with advanced life-limiting illness; and (2) to pilot the method for a Phase III Randomised Controlled Trial (RCT). DESIGN: The INSPIRE study will be conducted within the Medical Research Council (MRC) Framework for the Evaluation of Complex Interventions (Phases 0-2) and includes an exploratory two-arm delayed intervention randomised controlled trial. Eighty patients and/or their carers will be randomly allocated to one of two groups: (I) Intervention: GNP in addition to standard care or (II) Control: Standard Care. Recipients of the GNP will be asked for their views on participating in both the study and the intervention. Quantitative and qualitative data will be gathered from both groups over eight weeks through face-to-face interviews which will be conducted before, during and after the intervention. The primary outcome is the effect of the intervention on social and practical need. Secondary outcomes are quality of life, loneliness, social support, social capital, unscheduled health service utilisation, caregiver burden, adverse impacts, and satisfaction with intervention. Volunteers engaged in the GNP will also be assessed in terms of their death anxiety, death self efficacy, self-reported knowledge and confidence with eleven skills considered necessary to be effective GNP volunteers. DISCUSSION: The INSPIRE study addresses an important knowledge gap, providing evidence on the efficacy, utility and acceptability of a unique model of social and practical support for people living at home, with advanced life-limiting illness. The findings will be important in informing the development (and evaluation) of similar service models and policy elsewhere both nationally and internationally. TRIAL REGISTRATION: ISRCTN18400594 18(th) February 2015.

Existential ageing and dying: A scoping review.

BACKGROUND: After significant early interest in aging and dying, recent empirical studies have been few and theoretically fragmented. OBJECTIVE: The aims of this review were to map what is empirically known about the intersections between existential aging (a sense of passing years that evoke a sense of nearness-to-death) and dying identity and to describe the available evidence. METHOD: Articles were reviewed employing PRISMA guidelines. Seven data bases were searched resulted in 165 records. Of these 165 records a final selection of 24 studies that met the criteria were examined. RESULTS: Evidence from the review found that the formation of the identity of dying alongside existential aging was associated with personal changes related to self/gerotranscendence, self-concerns about the inevitability of death (mortality salience), self-concerns about the prospect of death (death anxiety), attitudes toward the older self as a moderator of attitudes to death (aging attitudes), or simply anticipating the death of self (the future). Collectively, these studies found that death and dying were threats or challenges to life as an increasingly aging identity and that this seems to require compensation or accommodation. CONCLUSION: These studies confirm the importance of nearness-to-death on identity formation and psychological change in older populations. However, most of the studies were quantitative and tested for pre-existing ideas and concepts. There is a need for more qualitative studies to search for wider or parallel meanings about identity change in the face of aging and death, more longitudinal designs, and greater attention to mixed methods approaches, especially for populations for whom talk or writing may be restrictive.

Bereavement care reimagined.

Bereavement, a specific kind of grief in response to a death, has been embedded in human history, in cultural patterns, with ritual, ceremony, and community kindness being the mainstay of grief support. The advent of professionalised grief counselling has seen the increasing domination of professional support as the best way to support someone bereaved, with a consequent loss of the varied forms of community support. The availability of professional grief counselling is limited, with only a small percentage of bereaved people accessing it or needing to access it. In this article, we argue for a realignment of professional grief services, strengthening community actions, and reorientation of health care in keeping with the Ottawa Charter for Health Promotion. Community sources of grief support are being reinvented in multiple ways. Professional services can develop links and relationships with these communities of support. A population-based public health approach to bereavement care is needed. This can only be achieved through communities and professionals working together. This partnership working underlines three implications for practice. These are (I) love and friendship must be the bedrock of support for grief and loss and the strengthening of these supports should be the priority for all therapeutic and social actions, (II) the multiple and varied community and civic sector sources of grief support should be the mainstay of the bereaved, and (III) bereavement professionals should work in the context of community, linking their clients with sustainable community supports.

How does community engagement evolve in different compassionate community contexts? A longitudinal comparative ethnographic research protocol.

Background: Compassionate communities build on health promoting palliative care that aims to address gaps in access, quality, and continuity of care in the context of dying, death, loss, and grief. While community engagement is a core principle of public health palliative care, it has received little attention in empirical studies of compassionate communities. Objectives: The objectives of this research are to describe the process of community engagement initiated by two compassionate communities projects, to understand the influence of contextual factors on community engagement over time, and assess the contribution of community engagement on proximal outcomes and the potential for sustaining compassionate communities. Research Approach and Design: We use a community-based participatory action-research approach to study two compassionate communities initiatives in Montreal (Canada). We develop a longitudinal comparative ethnographic design to study how community engagement evolves in different compassionate communities contexts. Methods and Analysis: Data collection includes focus groups, review of key documents and project logbooks, participant observation, semi-structured interviews with key informants, and questionnaires with a focus on community engagement. Grounded in the ecology of engagement theory and the Canadian compassionate communities evaluation framework, data analysis is structured around longitudinal and comparative axes to assess the evolution of community engagement over time and to explore the contextual factors influencing the process of community engagement and its impacts according to local context. Ethic: This research is approved by the research ethics board of the Centre hospitalier de l'Université de Montréal (approval certificate #18.353). Discussion: Understanding the process of community engagement in two compassionate communities will contribute to a deeper understanding of the relationships between local context, community engagement processes, and their effect on compassionate communities outcomes.

Family care of the dying in the Republic of Moldova: a qualitative study.

This paper reports the principle findings of a national, cross-sectional, interview-based study of the experiences of people who cared for a dying family member in the Republic of Moldova. Study data, collected from 102 interviews, covered four broad areas: the experiences of the dying person; family members' own experiences of caring; the practice (or non-practice) of any traditional customs for dying or death; and family carers' views of their own needs in these circumstances. Most carers reported high levels of psychological distress. Dying persons were reported to experience significant and unrelieved suffering. The practice of traditional customs was uneven, and there were significant levels of non-practice. Most respondents expressed a need for greater professional support, respite, specialized equipment and medicines, and home help from health care professionals. The implications of these findings are discussed in terms of potential local developments and international aid.

Dying and death reimagined.

This article presents an interview with lead authors Dr Libby Sallnow and Dr Richard Smith of the 'Report of the Lancet Commission on the Value of death: bring death back to life' published in January 2022. The authors are interviewed by Julian Abel, Director of 'Compassionate Communities UK', and Allan Kellehear the Co-Editor-in-Chief of 'Palliative Care & Social Practice'. The interview covers the reasons why the authors believe it is now time to review our major ways of providing care at the end of life including the current efforts in palliative care. The interview also underlines the important points made in the Report, provides reflections on some of its limitations, and suggests the role readers may play in contributing to the Report's recommendations and challenges.

Access to palliative care reimagined.

Access to palliative care is commonly considered as solely a health services challenge rather than a community challenge. Successive healthcare reports continue to pose the question of access and its solution in terms that ask what a service can do rather than what an ally a service can become. However, the question is not what can we do for disadvantaged communities, but rather, what can we do together with them as fellow providers of palliative care. The first part of this article reviews the most common recommendations offered for increasing access to palliative care. The second part advocates an alternative way to address this challenge by employing the key practice methods of a new public health / health promotion approach to palliative care.

Home away from home? A case study of bedside objects in a hospice.

This is a descriptive case study employing a photographic survey of the numerous objects that patients and their social networks bring to a hospice setting. Photographs were taken of all objects kept by the bedside by 31 inpatients in a hospice in the UK county of Durham. These objects ranged from assorted food and drink, greetings cards and magazines, to more specific personal items such as family photos, children's drawings, and religious icons. A total of 176 objects were analysed. There were two principle findings. First, patients appeared to bring objects to a hospice setting that reflected their desire to partially recreate their home settings or functions, however modestly. Second, despite a major diversity of objects, and the fact that most objects underlined desires for distraction, entertainment and social contact, almost every individual patient harboured at least one personally unique object. These two observations--creating some semblance of 'home' and the existence of uniqueness amid a plethora of expected patient paraphernalia--suggest important reconsideration of both hospice settings and the possibility of new ways to engage patients about meaning, illness and loss.

Dying as a social relationship: a sociological review of debates on the determination of death.

The research literature about 'brain death' is largely characterized by biomedical, bioethical and legal writing. This has led to overlooking wider but no less pertinent social, historical and cultural understandings about death. By ignoring the work of other social and clinical colleagues in the study of dying, the literature on the determination of death has become unnecessarily abstract and socially disconnected from parallel concerns about death and dying. This has led, and continues to lead to, incomplete suggestions and narrow discussions about the nature of death as well as an ongoing misunderstanding of general public and health care staff responses to brain death criteria. This paper provides a sociological outline of these problems through a review of the key literature on the determination of death.

Palliative Curriculum Re-imagined: A Critical Evaluation of the UK Palliative Medicine Syllabus.

The UK Palliative Medicine Syllabus is critically evaluated to assess its relationship and relevance to contemporary palliative care policy and direction. Three criteria are employed for this review: (1) relevance to non-cancer dying, ageing, caregivers, and bereaved populations; (2) uptake and adoption of well-being models of public health alongside traditional illness and disease models of clinical understanding; and (3) uptake and integration of public health insights and methodologies for social support. We conclude that the current syllabus falls dramatically short on all 3 criteria. Suggestions are made for future consultation and revision.