The public health end-of-life care movement: History, principles, and styles of practice

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Palliative care - the new essentials

yesBackground: 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 comorbidities 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

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

Shared near-death and related illness experiences: Steps on an unscheduled journey

ABSTRACT: This paper discusses the key social features in shared journeys into near-death experiences (NDEs) and related illness experiences of other people. Of special interest in this paper is the way that those persons who are not ill or near death account for their sharing of these experiences. These are often people who are caregivers or intimates of NDErs or dying people but who claim to share part of the NDE or dying experience. We provide case examples to illustrate the essential psychological and social experiences that these people undergo during their joint experiences with NDErs and other seriously ill people. From an analysis of the recurrent themes emergent in these joint experiences we identify and discuss the major conceptual steps in the creation of their personal explanations: (1) Exit the Familiar, (2) Extraordinary Experiences, (3) Extraordinary Experiences End, (4) What Happened to Me? (5) The World Responds, and (6) The Return of the Native. In the final analysis, the processes that these people undergo in the search for explanations is similar in most respects to those at the center of near-death and other related illness experiences

Shared near-death and related illness experiences: Steps on an unscheduled journey

ABSTRACT: This paper discusses the key social features in shared journeys into near-death experiences (NDEs) and related illness experiences of other people. Of special interest in this paper is the way that those persons who are not ill or near death account for their sharing of these experiences. These are often people who are caregivers or intimates of NDErs or dying people but who claim to share part of the NDE or dying experience. We provide case examples to illustrate the essential psychological and social experiences that these people undergo during their joint experiences with NDErs and other seriously ill people. From an analysis of the recurrent themes emergent in these joint experiences we identify and discuss the major conceptual steps in the creation of their personal explanations: (1) Exit the Familiar, (2) Extraordinary Experiences, (3) Extraordinary Experiences End, (4) What Happened to Me? (5) The World Responds, and (6) The Return of the Native. In the final analysis, the processes that these people undergo in the search for explanations is similar in most respects to those at the center of near-death and other related illness experiences

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

YesBackground: Reducing emergency admissions to hospital has been a cornerstone of health care policy. There is little evidence of systematic interventions which achieved this aim across a population. We report the impact on unplanned admissions to hospital through a complex intervention over a 44 month period in Frome, Somerset. Aim: A population health complex intervention of an enhanced model of primary care and compassionate communities to improve population health and reduce emergency admissions to hospital Design: A cohort retrospective study of a complex intervention on all emergency admissions in Frome compared to Somerset from April 2013 to December 2017. Setting: Frome Medical Practice, Somerset Methods: Patients were identified using broad criteria including anyone with 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% CI: 2.8, 13.1; p=0.006) in unplanned hospital admissions across the whole population of Frome, over the study period from April 2014 to December 2017. At the same time, there was sharp increase in the number of admissions per quarter, within the Somerset, with an increase in the number of unplanned admissions of 236 per quarter (95% CI: 152, 320; p<0.001). Conclusion: The complex intervention in Frome was associated with highly significant reductions in unplanned admissions to hospital with reduction of healthcare costs across the whole population of From

The qualitative DIGNISPACE study: The co-design of a life review, meaning-making and legacy leaving digital intervention for young people with life-limiting conditions

Background: Young people with life-limiting conditions have unmet psycho-spiritual needs. Dignity Therapy is a psycho-therapeutic end-of-life intervention that addresses life review, meaning making and legacy leaving. Studies of Dignity Therapy including young people are limited. Aim: To co-design a digital Dignity Therapy-based intervention for young people with life-limiting conditions (DIGNISPACE). Design: A qualitative study including focus groups (n=5) with hospice-based healthcare professionals (n=23), semi-structured interviews with young people with life-limiting conditions (n=13) and family carers (n=12). Data were analyzed using framework analysis. Results: Three main themes were derived; intervention purpose, amendments to the Dignity Therapy question protocol and content for a digital application. Findings influenced the development of DIGNISPACE and a model of dignity in young people with life-limiting conditions. Conclusions: DIGNISPACE addresses the psycho-spiritual needs of young people with life-limiting conditions, including tenets of the model of dignity in young people with life-limiting conditions in its content and delivery

The Qualitative DIGNISPACE Study: The Co-Design of a Life Review, Meaning-Making and Legacy Leaving Digital Intervention for Young People with Life-Limiting Conditions

Background: Young people with life-limiting conditions have unmet psycho-spiritual needs. Dignity Therapy is a psycho-therapeutic end-of-life intervention that addresses life review, meaning making and legacy leaving. Studies of Dignity Therapy including young people are limited. Aim: To co-design a digital Dignity Therapy-based intervention for young people with life-limiting conditions (DIGNISPACE). Design: A qualitative study including focus groups (n=5) with hospice-based healthcare professionals (n=23), semi-structured interviews with young people with life-limiting conditions (n=13) and family carers (n=12). Data were analyzed using framework analysis. Results: Three main themes were derived; intervention purpose, amendments to the Dignity Therapy question protocol and content for a digital application. Findings influenced the development of DIGNISPACE and a model of dignity in young people with life-limiting conditions. Conclusions: DIGNISPACE addresses the psycho-spiritual needs of young people with life-limiting conditions, including tenets of the model of dignity in young people with life-limiting conditions in its content and delivery

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