Dying old: and preferably alone? Agency, resistance and dissent at the end of life

Older people who die alone are commonly portrayed negatively in the academic and popular literature. Dying alone is viewed either as an outcome of anti-social behaviour or the result of family, neighbourhood or social services neglect. The idea that people may be exercising agency, resistance or dissent at the end of life and that they do not want attention from services or the wider community receives little or no consideration. By comparing the community and professional views with those of the elderly about end of life preferences, this paper argues that the academic and community image of the elderly as ’’victims’’ has eclipsed the usual ability to see this group in pluralist terms. This stereotype of older people who die alone has negative consequences for sociological and policy analysis

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

YesAims: 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.Health Department of Western Australia

Bereavement and palliative care: A public health perspective

In recent years there has been an increasing emphasis upon public health perspectives that place palliative care in the context of end-of-life services across whole populations. There is little corresponding public health interest in bereavement. Yet if we have to develop relevant, coherent, and comprehensive end-of-life care policies and practices, public health approaches to palliative care need to be accompanied by public health approaches to bereavement care. We argue here that palliative care services should match their commitment to providing a good death with a commitment to supporting good grief, and that this means investing their efforts principally in developing community capacity for bereavement care rather than seeking to deliver specialized bereavement services to relatives and friends of those who have received palliative care services

New public health approaches to end-of-life care

The palliative and end-of-life care movement worldwide has been a success story in many respects. Palliative care services exist in many countries throughout the world and are increasingly integrated into mainstream health services. Despite these achievements, the movement continues to face challenges from demographic trends, changing patterns of illness, and social contexts of care which suggest increasing need for services. Questions have been raised regarding the appropriateness of building further services, as compared with new perspectives on care, which see communities and professionals working in partnership. These perspectives are collectively known as the new public health perspective and this chapter details the emergence of new public health perspectives in end-of-life care

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

YesBACKGROUND: 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

Journeying with Morrie: challenging notions of professional delivery of spiritual care at the end of life

The spiritual welfare of dying people has in recent years moved from the domain of religion to become the concern of health care professionals, particularly as part of the ideal of holism that underpins palliative care. Professional delivery of spiritual care incorporates the features of assessment, control and treatment which may involve varying degrees of intrusion into the patient's deeply personal inner self. Using a case study approach, this article explores meanings of spirituality and understandings of what is meant by the term 'spiritual care'. It argues that biographical and community approaches to spiritual care of dying people may be more congruent with the concept of the 'whole person' because this support is rooted in an intimate contextual knowledge of the dying person by the caregiver. This challenges the dominant discourses of professional expertise to embrace informal personal and collective competence in this important aspect of end of life care

Palliative curriculum re-imagined: A critical evaluation of the UK Palliative Medicine Syllabus

YesThe 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

The impact of emotions on practicum learning

Nine mature aged, experienced practitioners enrolled to gain a BSW qualification in social work were interviewed regarding a course requirement to complete the first placement. At the time of interview no recognition of prior learning for previous experience in the field was made possible for these students. As educators we had experienced considerable hostility from students who believed they should be exempt from completing this course requirement. This paper reports on interviews with the nine students, where we consider how student sentiment about completing the practice learning component might impact upon their learning experience. As anticipated, some students expressed strong negative views about being on placement. However, others were much more positive about the experience. These mixed views prompted us to explore further the relationship between emotion and practice learning. The article begins with a review of the literature concerning mature student engagement with tertiary education, followed by an overview of theory and research related to the ways feelings and emotion influence learning. Using passages from the interviews, expressions of participant anxiety, anger and excitement about the practicum are discussed with the view to extending discourse about practicum learning to include consideration of emotional intelligence and investment.<br /

‘That eccentric use of land at the top of the hill’: Cemeteries and stories of the city

Most contemporary research accounts for conflict within cemetery space, but does not consider the potentially contested and poorly understood role of cemeteries within their broader cityscape. This study draws on stories from cemetery managers across England and Wales to narrate this multifunctionality, as they hold the pivotal role which oversees both the day-to-day running of the cemetery, and its strategic role within a given municipality. The study outlines how cemeteries hold multiple functions in the cities in which they are located, specifically contributing to greenspace or green infrastructure, civic identity and local place attachment. These varying city level roles in turn impact on what is deemed (il)legitimate behaviour within the cemetery. Moreover, they raise important considerations for urban planners and policymakers who currently have little guidance on planning for new or existing cemeteries but are critical in the ongoing successful development of cities

Crafting communities: promoting inclusion, empowerment, and learning between older women

While social policy and planning documents are replete with ominous warnings about the cost of an ageing population, this article tells a different story about the productive and self-sustaining networks that exist among older women in the community who do craftwork. From our research conducted in Victoria, Australia during 2007&ndash;2008 we discovered a resilient and committed group of older women quietly and steadily contributing to community fundraising, building social networks, and providing learning opportunities to each other in diverse ways. Through our conversations with nine craftswomen we have been able to articulate clear links between the theory and models commonly espoused in the community development literature and the life-enriching practices used in organising informal community craft group activities. From our interviews with the older women we provide evidence of sustained participation, the generation of social capital, and the fostering of life-long learning. While none of the women we spoke to were trained in community development and did not use language commonly associated with feminist ideology, the relationship between the informal group work with principles of empowerment and self-efficacy were unmistakeable. We conclude with a discussion of the implications of our findings for critical social work practice.<br /