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.

The Compassionate Communities Connectors model for end-of-life care: implementation and evaluation.

Objectives: This pilot project aimed to develop, implement and evaluate a model of care delivered by community volunteers, called Compassionate Communities Connectors. The Connectors' principal task was to support people living with advanced life-limiting illnesses or palliative care needs by enhancing their supportive networks with Caring Helpers enlisted from the local community. Methods: The project was undertaken in Western Australia, 2020-2022. A mixed methods research design incorporated a prospective cohort longitudinal design with two cross-sectional measurements, pre- and post-intervention. The primary outcome was the effect of the intervention on social connectedness. Secondary outcomes were the effect of the intervention on unmet practical or social needs and support from social networks, and the self-reported impact of the programme on social wellbeing such as coping with daily activities, access to formal services, community links, social activity and reducing social isolation. Results: Twenty Connectors were trained but 13 participated; 43 patients participated but 30 completed the study. Over half of these patients lived alone and 80% of their needs were in the social domain. There were significant improvements in social connectedness, reflected in reduced social isolation, better coping with daily activities and a two-fold increase in supportive networks. The programme was able to address gaps that formal services could not, particularly for people who lived alone, or were socially isolated in more rural communities that are out of the frequent reach of formal services. Conclusions: This project led to an ongoing programme that has been incorporated by the health service as 'business as usual', demonstrating rapid translation into practice. It has laid solid grounds for community capacity building with successful measurable outcomes in line with reports on similar programmes. Ongoing work is focused on replication in other communities to help them establish a similar model of care that better integrates formal and informal networks.

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.

The Compassionate Communities Connectors model for end-of-life care: a community and health service partnership in Western Australia.

BACKGROUND: There is an international drive towards increasing provision of community-led models of social and practical support for people living with advanced illness. AIM: This feasibility project aims to develop, implement and evaluate a model of community volunteers, identified as Compassionate Communities Connectors, to support people living with advanced life limiting illnesses/palliative care needs. The aims also include the development and evaluation of a training programme for volunteers and assessment of the feasibility, acceptability and preliminary effectiveness of this model of care. METHODS: The approach seeks to map and mobilise people's personal networks of care through the Connectors enlisting Caring Helpers (community volunteers). Up to 10 Connectors will be trained to work with at least 30 families selected by the palliative care service as requiring support. The primary outcome is the effect of the intervention on social connectedness. Secondary outcomes are the intervention's effect on unplanned hospital utilisation, caregiver support needs, advance care plans and satisfaction with intervention for patients/carers, volunteers and service providers. CONCLUSION: It is expected that this intervention will enhance patient, carer and family social, psychological and practical support and reduce the need for dying people to be admitted to a hospital.

Matching response to need: What makes social networks fit for providing bereavement support?

The objectives of this study were to explore the goodness of fit between the bereaved peoples' needs and the support offered by their social networks; to ascertain whether this support was experienced as helpful or unhelpful by bereaved people; and to explore both the types of social networks that offer effective support and the characteristics of the communities that encourage and nurture such networks. This study was based on qualitative interviews from twenty bereaved people, in Western Australia, interviewed in 2013. A framework analysis of these interviews was undertaken using a deductive approach based on the goodness of fit framework. Much of this support is provided informally in community settings by a range of people already involved in the everyday lives of those recently bereaved; and that support can be helpful or unhelpful depending on its amount, timing, function and structure. Improving the fit between the bereaved person's needs and the support offered may thus involve identifying and enhancing the caring capacity of existing networks. An important strategy for achieving this is to train community members in mapping and developing these naturally occurring networks. Some such networks will include relationships of long standing, others may be circles of care formed during a period of caring. Peer support bereavement networks develop from these existing networks and may also recruit new members who were not part of the caring circle. The findings endorse social models of bereavement care that fit within a public health approach rather than relying solely on professional care. As exemplified by Compassionate Communities policies and practices, establishing collaboration between community networks and professional services is vital for effective and sustainable bereavement care.

Botulinum Toxin A: A Novel Therapeutic Modality for Upper Extremity Chronic Regional Pain Syndrome.

BACKGROUND: Complex regional pain syndromes (CRPS) is a disease that is poorly understood. It is a chronic pain syndrome characterized by sympathetic disruptions as well as CNS sensitization. Botulinum Toxin-A has been shown to have efficacy in Raynaud's as well as other neuropathic pain disorders. Perhaps BTX-A warrants experimentation in the treatment of CRPS. METHODS: Patients with CRPS refractory to 2 or more regional sympathetic nerve blocks in 2007 were included in the study. Patient's were asked to rank their initial pain on a visual analog scale of 0 to 10 (10 being the worst pain). "Tenderness maps" were marked on patient's areas of most pain in 1 by 1 centimeter grids. Each box on the grid was injected with 10 IU of BTX-A after nerve blocks with 1% lidocaine. Treatment sessions occured on a monthly basis with VAS pain scores being re-assessed immediately before the new treatment. t Test, linear regression, and Cohen's D-test were used to analyze the correlation of the data. RESULTS: Study sample was 20 patients. Etiology of CRPS was 6 amputations, 4 crush injuries, 4 penetrating injuries, and 2 lacerations. Average pain reduction on VAS scale achieved was 2.05 points. Average percentage pain reduction was 22.94%. Cohen's D Test also showed a meaningful difference with a score of 1.01. Linear regression R2 = 0.491. Maximum pain reduction, on average, was achieved by treatment 9. CONCLUSION: Despite the esoteric etiology of CRPS, BTX-A has a well-demonstrated mechanism of effect. BTX-A should be further explored as a treatment modality for CRPS.

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.

Development and Management of Networks of Care at the End of Life (the REDCUIDA Intervention): Protocol for a Nonrandomized Controlled Trial.

BACKGROUND: End-of-life needs can be only partly met by formalized health and palliative care resources. This creates the opportunity for the social support network of family and community to play a crucial role in this stage of life. Compassionate communities can be the missing piece to a complete care model at the end of life. OBJECTIVE: The main objective of this study is to evaluate the REDCUIDA (Redes de Cuidados or Network of Care) intervention for the development and management of networks of care around people with advanced disease or at the end of life. METHODS: The study is a 2-year nonrandomized controlled trial using 2 parallel groups. For the intervention group, we will combine palliative care treatment with a community promoter intervention, compared with a control group without intervention. Participants will be patients under a community palliative care team's supervision with and without intervention. The community promotor will deliver the intervention in 7 sessions at 2 levels: the patient and family level will identify unmet needs, and the community level will activate resources to develop social networks to satisfy patient and family needs. A sample size of 320 patients per group per 100,000 inhabitants will offer adequate information and will give the study 80% power to detect a 20% increase in unmet needs, decrease families' burden, improve families' satisfaction, and decrease the use of health system resources, the primary end point. Results will be based on patients' baseline and final analysis (after 7 weeks of the intervention). We will carry out descriptive analyses of variables related to patients' needs and of people involved in the social network. We will analyze pre- and postintervention data for each group, including measures of central tendency, confidence intervals for the 95% average, contingency tables, and a linear regression. For continuous variables, we will use Student t test to compare independent samples with normal distribution and Mann-Whitney U test for nonnormal distributions. For discrete variables, we will use Mann-Whitney U test. For dichotomous variables we will use Pearson chi-square test. All tests will be carried out with a significance level alpha=.05. RESULTS: Ethical approval for this study was given by the Clinical Research Committee of Andalusian Health Service, Spain (CI 1020-N-17), in June 2018. The community promoter has been identified, received an expert community-based palliative care course, and will start making contacts in the community and the palliative care teams involved in the research project. CONCLUSIONS: The results of this study will provide evidence of the benefit of the REDCUIDA protocol on the development and assessment of networks of compassionate communities at the end of life. It will provide information about clinical and emotional improvements, satisfaction, proxy burden, and health care resource consumption regarding patients in palliative care. REGISTERED REPORT IDENTIFIER: RR1-10.2196/10515.

Palliative care for all? How can Brazil develop a palliative care service founded on principles of equity and access for all?

PURPOSE OF REVIEW: Despite the historical international development of palliative care over the last 50 years, provision of equity of care and access to appropriate medication remains a major problem in many countries across the world. Interest in the public health approach to end-of-life care has grown over the last 20 years. Models of palliative care, which are affordable and provide equity of care are changing through these new concepts. We describe an existing model of practice in a primary care setting in Rio Grande in Brazil, which could act as a template for redesign of palliative care services. RECENT FINDINGS: Traditional models of palliative care have focussed on the physical, social, psychological and spiritual domains. Abel and Kellehear have proposed a new model, uniting specialist and generalist palliative care with compassionate communities and the civic component encapsulated in the compassionate city charter. This model is more comprehensive, emphasizing both harm reduction and health and well being promotion, and is currently being rolled out within the Family Health Strategy in Rio Grande in Brazil. SUMMARY: An existing model of palliative care, which includes the public health approach in Rio Grande be used as a basis for more equitable palliative care in Brazil, to meet a large unmet need.

The buddy group - peer support for the bereaved.

We describe in this paper the story of the 'Buddy Groups' for bereaved people that were set up at Weston Hospicecare in 2008 and have endured ever since. The group have helped bereaved people to find meaning and value despite their grief. We observed that, through the strength of the relationships formed, people were able to recover well. Group members reported back to us the significant value they placed on being in a Buddy Group.

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.