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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.
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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.
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Serviços de Saúde Comunitária/organização & administração , Serviço Hospitalar de Emergência/estatística & dados numéricos , Aceitação pelo Paciente de Cuidados de Saúde/estatística & dados numéricos , Atenção Primária à Saúde/estatística & dados numéricos , Serviços de Saúde Comunitária/economia , Análise Custo-Benefício , Serviço Hospitalar de Emergência/economia , Pesquisa sobre Serviços de Saúde , Hospitalização , Humanos , Atenção Primária à Saúde/economia , Reprodutibilidade dos Testes , Estudos Retrospectivos , Apoio SocialRESUMO
BACKGROUND: A program of Compassionate City or Community (CC) has been designed and developed in the City of Vic (43,964 habitants, Barcelona, Spain), based on The Compassionate City Charter and other public health literature and experiments, with the joint leadership of the City Council and the Chair of Palliative Care at the University of Vic, and as an expansion of a comprehensive and integrated system of palliative care. METHODS: The program started with an assessment of needs of the city as identified by 48 social organizations with a foundational workshop and a semi-structured survey. After this assessment, the mission, vision, values and aims were agreed. The main aims consisted in promoting changes in social and cultural attitudes toward the end of life (EoL) and providing integrated care for people with advanced chronic conditions and social needs such as loneliness, poverty, low access to services at home, or conflict. The selected slogan was "Living with meaning, dignity, and support the end of life". RESULTS: The program for the first year has included 19 activities (cultural, training, informative, and mixed) and followed by 1,260 attendants, and the training activities were followed by 147 people. Local and regional sponsors are funding the initiative. After a year, a quantitative and qualitative evaluation was performed, showing high participation and satisfaction of the attendants and organizations. In the second year, the care for particular vulnerable people defined as targets (EoL and social factors described before) will start with volunteers with more organizations to join the project. CONCLUSIONS: The key identified factors for the initial success are: the strong joint leadership between social department of the Council and the University; clear aims and targets; high participation rates; the limited size of the geographical context; which allowed high participation and recognition; and the commitment to evaluate results.
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Cidades , Serviços de Saúde Comunitária/organização & administração , Colaboração Intersetorial , Modelos Organizacionais , Cuidados Paliativos/organização & administração , Universidades , Humanos , EspanhaRESUMO
The clinical and social epidemiology of living with a life-threatening or life-limiting illness, frail ageing, long-term caregiving, and grief and bereavement is well documented in the palliative care, psycho-oncology and psychiatric literature but this investigation asks what interest exists from the mainstream public health sector in these health and illness experiences. This paper reports a content analysis of 7 key British public health journals, 14 major public health textbooks and 3 public health websites employing key word and synonym searches to assess the size and quality of interest in populations related to ageing, dying, caregiving, and grief and bereavement. Compared with other public health issues, such as obesity and tobacco use, for examples, interest in the social experience and epidemiology of end-of-life experiences is extremely low. Reasons for this lack of interest are explored.
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Luto , Cuidadores/psicologia , Necessidades e Demandas de Serviços de Saúde , Cuidados Paliativos , Saúde Pública , Assistência Terminal/psicologia , Pesar , Humanos , Reino UnidoRESUMO
Palliative care, since its inception over 60â years ago, has set the standard of how to care for people who are dying. Key features among these standards have been the professional development of clinical specialisms such as palliative medicine and palliative nursing; the essential addition of the multidisciplinary team to these two new specialisms that included social, spiritual and allied health workers-an outgrowth of the recognition that routine work with the dying, their carers, and the bereaved required more than solely clinical skills; and the unique partnership with communities that yielded the volunteer movement within palliative care. Professional, evidence-based symptom management and the importance of supportive care in its widest possible sense were and remain the cornerstones of the modern palliative care approach. However, the majority of people with terminal illnesses do not have access to palliative care teams, whose main focus of care remains patients with cancer. In the context outlined above this paper therefore poses two key questions: how can we provide an equitable level of care for all people irrespective of diagnosis and how can we increase the range and quality of non-medical/nursing supportive care in a context of diminishing resources? We argue that an important opportunity and solution can be found by adopting the principles of a public health approach to end-of-life care.
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Atenção à Saúde/normas , Cuidados Paliativos/normas , Prática de Saúde Pública/normas , Assistência Terminal/normas , Acessibilidade aos Serviços de Saúde/normas , Necessidades e Demandas de Serviços de Saúde/normas , HumanosRESUMO
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.
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Redes Comunitárias/estatística & dados numéricos , Cuidados Paliativos/métodos , Qualidade de Vida , Projetos de Pesquisa , Apoio Social , Adulto , Cuidadores , Análise Custo-Benefício , Feminino , Humanos , Irlanda , Masculino , Projetos Piloto , Características de Residência , Inquéritos e QuestionáriosRESUMO
This article is a review of Robert Kastenbaum's 1979 essay entitled "Healthy dying: A paradoxical quest continues." It begins with a summary of the arguments and challenges in the original essay. This is followed by an evaluation of his original claims in the light of contemporary insights in modern public health history and empirical studies of near-death experiences and death bed visions. The recent development of health promotion in palliative care is described in relation to these developments and Kastenbaum's early question about the paradoxical quest for health while dying is again posed against this background. Given our modern understanding of "health" in current global health policy and debates, it is argued that "healthy dying" is no paradox. Instead, the pursuit of health at the end of life represents a realistic modern desire to compress morbidity, minimize unnecessary suffering, and enhance quality of life at this time.