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.

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.

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.

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.

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.

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.

Reducing emergency hospital admissions: a population health complex intervention of an enhanced model of primary care and compassionate communities.

BACKGROUND: Reducing emergency admissions to hospital has been a cornerstone of healthcare policy. Little evidence exists to show that systematic interventions across a population have achieved this aim. The authors report the impact of a complex intervention over a 44-month period in Frome, Somerset, on unplanned admissions to hospital. AIM: To evaluate a population health complex intervention of an enhanced model of primary care and compassionate communities on population health improvement and reduction of emergency admissions to hospital. DESIGN AND SETTING: A cohort retrospective study of a complex intervention on all emergency admissions in Frome Medical Practice, Somerset, compared with the remainder of Somerset, from April 2013 to December 2017. METHOD: Patients were identified using broad criteria, including anyone giving cause for concern. Patient-centred goal setting and care planning combined with a compassionate community social approach was implemented broadly across the population of Frome. RESULTS: There was a progressive reduction, by 7.9 cases per quarter (95% confidence interval [CI] = 2.8 to 13.1, P = 0.006), in unplanned hospital admissions across the whole population of Frome during the study period from April 2013 to December 2017, a decrease of 14.0%. At the same time, there was a 28.5% increase in admissions per quarter within Somerset, with a rise in the number of unplanned admissions of 236 per quarter (95% CI = 152 to 320, P<0.001). CONCLUSION: The complex intervention in Frome was associated with highly significant reductions in unplanned admissions to hospital, with a decrease in healthcare costs across the whole population of Frome.

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.

Palliative care-the new essentials.

BACKGROUND: If global palliative care is to successfully address challenges of unequal access, continuity of care, and health services reductionism, new practice models to address these issues need to be identified, debated and tested. This paper offers one such practice model based on a public health approach to palliative care that has so far shown promising evidence of effectiveness. METHODS: We describe how four essential elements within a public health model can work together to address quality and continuity of care as well as addressing the numerous barriers of access. These elements are: (I) specialist, and (II) generalist palliative care services working with (III) communities and neighbourhoods, working in their turn with their (IV) key civic institutions. RESULTS: The positive and negative impact and advantages of each of these elements is described and discussed. CONCLUSIONS: A solely clinical model of palliative care is inadequate to addressing the multiple co-morbidities and access issues characteristic of modern palliative care. A public health approach based on a close partnership between clinical services and communities/civic institutions is the optimal practice model.