Independent hospice care in the community: two case studies

Following its remarkable success over the past 25 years the hospice movement is now at a watershed in its development. The growing legitimacy of palliative care as a health care specialty has coincided with the development of the internal market within public sector services, and the promotion of community care. The impact of these changes is now being felt by the hospice movement and may well result in radically new forms of service provision. The focus of this paper is on the future direction of the hospices. We argue, that in the present policy context the main priority must be palliative care in the community, using two case studies of innovative services to illustrate how this might be achieved. We also explore a variety of factors which may constrain the development of community care for dying people. These include the diminishing experience of families and primary health care workers in managing death and dying and the often strongly held belief that hospice care must be in-patient care. New community services may also face difficulties both in finding a market niche which complements rather than supersedes existing provision, and in securing service contracts where provision cuts across the health and social care divide. These issues are explored through an examination of the models of care developed by the two hospice groups, their integration within existing networks of provision, and their relationship with purchasing authorities.     

恶性肿瘤患者临终关怀需求的影响因素分析

目的 探讨新疆医院恶性肿瘤患者临终关怀需求影响因素。 方法 2016年1-12月以不记名调查方式随机调查2所医院恶性肿瘤患者是否愿意接受临终关怀需求以及患者一般信息、疾病信息、治疗方法等。并采用单因素χ²检验和多因素logistic逐步回归分析影响恶性肿瘤患者临终关怀需求因素。 结果 276名被调查的恶性肿瘤患者中,30.07%的患者选择愿意接受临终关怀治疗。将经过单因素分析后差异有统计学意义的因素进行多元逐步logistic回归分析,显示恶性肿瘤临终关怀需求影响因素为年龄(OR=1.723)、学历(OR=2.471)、宗教信仰(OR=2.709)和付费方式(OR=1.836)。 结论 应对恶性肿瘤患者根据临终关怀需求影响因素采取针对性措施,进行心理、营养、疼痛的评估及管理,通过通俗易懂的方式宣教。     

我国姑息护理的发展现状与分析

综述了始息护理的内涵与模式，明白指出其在我国目前的发展现状，提出了我国始息护理的不足与发展的若干建议和目标。     

Supporting hospice volunteers and caregivers through community-based participatory research

Drawing on the results of community-based research with a local hospice organisation, this article addresses the need to enhance social support for caregivers of people with life-threatening illnesses. The goal of the research was to involve palliative care stakeholders in the identification, prioritisation and implementation of social support interventions for caregivers who provide palliative care support as hospice volunteers and as family members of those at end-of-life. Guided by a community-based participatory research approach, primary data were collected from 39 volunteer and family member caregivers through four focus groups and nine personal diaries in July 2008. Content analysis and modified constant comparison techniques resulted in emergent themes and priorities relating to challenges, existing coping strategies and resources, and potential support interventions. The findings revealed communication, emotional support, education, advocacy and personal fatigue as the most important challenges to be addressed through support interventions at the organisational (professional support, volunteer mentoring and continuing education) and household levels (caregiver assessments, telephone support and follow-up). There was convergence in how caregivers perceived and access existing social supports, yet a crucial divergence in the availability of resources among volunteers and family members. The findings are discussed in the light of the capacity for hospices to implement social supports and the potential efficacy of the community-based participatory research approach for enhancing social support for caregivers in other parts of health-care and social care.     

Constructing a new role for family carers and volunteers providing care towards the end of life: an action research approach exploring a new model of hospice care

The objective of this study was to understand the conceptualisation and development of a novel way of providing end-of-life care in a Cottage Hospice setting, with a focus on the role of family carers and volunteers within this care model. A participatory action research design enabled a situational analysis, together with change processes. The study setting was a hospice in the South of England, and its network of wider associates in the local health economy. Participants were purposively sampled to provide relevant information. Data collection (2017–2018) included documents (e.g., meeting minutes) and interviews (individual and group) with external (e.g., GPs) and internal (e.g., staff, managers, volunteers, patients, family carers) stakeholders. These were followed by action cycles conducted by a core action group which explored issues related to family and young carers, the relationship between the main and Cottage Hospices and workforce engagement with the change process. Iterative, inductive, thematic analysis was followed by axial coding facilitated within NVivo. Twenty-six individual and eight follow-up interviews, two group interviews and five discrete action cycles were completed. At the core was a focus on disruption of the norm of professionally provided and mediated care, with three main themes: imagining the future of Cottage Hospice (growing demand, a home-like space, innovative roles for families and volunteers); developing the role of family caregivers (making agreements, meeting needs, social inclusion and the ‘unknown’ expectations) and quality and safety issues (negative perceptions, personalised care and volunteer roles). Change was viewed as both a threat and an opportunity. Cottage Hospice represents the possibility of a truly new way of meeting the needs of dying people and their families, and could act as a template for progressive service developments elsewhere.     

General practice and specialist palliative care teams: an exploration of their working relationship from the perspective of clinical staff working in New Zealand

With the future focus on palliative and end‐of‐life care provision in the community, the role of the general practice team and their relationship with specialist palliative care providers is key to responding effectively to the projected increase in palliative care need. Studies have highlighted the potential to improve co‐ordination and minimise fragmentation of care for people living with palliative care need through a partnership between generalist services and specialist palliative care. However, to date, the exact nature of this partnership approach has not been well defined and debate exists about how to make such partnerships work successfully. The aim of this study was to explore how general practice and specialist palliative care team (SPCT) members view their relationship in terms of partnership working. Five focus group discussions with general practices and SPCT members (n = 35) were conducted in 2012 in two different regions of New Zealand and analysed using a general inductive approach. The findings indicate that participants’ understanding of partnership working was informed by their identity as a generalist or specialist, their existing rules of engagement and the approach they took towards sustaining the partnership. Considerable commitment to partnership working was shown by all participating teams. However, their working relationship was based primarily on trust and personal liaison, with limited formal systems in place to enable partnership working. Tensions between the cultures of ‘generalism’ and ‘specialism’ also provided challenges for those endeavouring to meet palliative care need collaboratively in the community. Further research is required to better understand the factors associated with successful partnership working between general practices and specialist palliative care in order to develop robust strategies to support a more sustainable model of community palliative care.     

晚期癌症患者居家宁养服务与住院姑息治疗成本-效益分析

目的:分析晚期癌症患者居家与住院姑息性治疗的疗效及医疗费用支出,为晚期癌症患者居家及住院治疗提供参考。方法:统计50位居家接受宁养服务和50位住院接受姑息治疗的患者的医疗费用并进行比较分析,通过问卷调查统计他们的生活质量并进行对比分析。结果:居家接受宁养服务的患者的医疗费用明显低于住院接受姑息治疗的患者(P<0.05),两组患者的生活质量无明显差异(P>0.05)。结论:晚期癌症患者居家接受宁养服务是一种较好的选择,且可避免医疗资源的浪费和过度治疗。     

IAGG/IAGG GARN International Survey of End-of-Life Care in Nursing Homes

This article reports the findings of a survey on end-of-life (EOL) care in nursing homes of 18 long-term care experts across 15 countries. The experts were chosen as a convenience-based sample of known experts in each country. The survey was administered in 2016 and included both open-ended responses for defining hospice care, palliative care, and “end of life,” and a series of questions related to the following areas—attitudes toward EOL care, current practice and EOL interventions, structure of care, and routine barriers. Overall experts strongly agreed that hospice and palliative care should be available in long-term care facilities and that both are defined by holistic, interdisciplinary approaches using measures of comfort across domains. However, it appears the experts felt that in most countries the reality fell short of what they believed would be ideal care. As a result, experts call for increased training, communication, and access to specialized EOL services within the nursing home.     

Fluid and Electrolyte Fluxes in the Gut

The relative contributions of diet and endogenous reserves to fluxes, the bidirectional movement of absorbed and secreted fluids and electrolytes, the sodium pump, and “intracellular shunts”—these are some of the factors involved in creating optimal intraluminal conditions for digestion and absorption. Also discussed are the derangements caused by vomiting, diarrhea, fistulae, and intestinal sequestration.     

A family support service for homeless children and parents: users' perspectives and characteristics

The objective of the present study was to establish the psychosocial characteristics and perspectives of 49 consecutive homeless families who received input from a new designated family support worker (FSW) post at a large statutory hostel for homeless parents and children. The FSW provided: assessment of social, educational and health needs; support and parent training; and liaison with and referral to specialist services. Measures included quantitative questionnaires (i.e. the Hospital Anxiety and Depression Scale, the Parenting Daily Hassles Scale, the Eyberg Child Behaviour Inventory, and the Health of the Nation Outcome Scales for Children and Adolescents), and a qualitative (semistructured) interview on service experiences and satisfaction. The psychosocial measures indicated high rates of parenting difficulties, mental health and related needs among children and their parents. Parenting difficulties were associated with child behaviour problems. Parents expressed satisfaction with the service whilst they were residents at the hostel, but they were often not clear about the objectives of agencies and interventions. Family support interventions have a key role in service provision for homeless and other vulnerable families by providing direct parenting interventions and ensuring that specialist agencies are appropriately involved. Family support worker involvement needs to continue when families are re-housed in the community.     

Development of a distance education palliative care programme for allied health professionals in Australia

A postal survey of allied health professionals working in hospice and palliative care in Australia was conducted in 1995. Its aims were to investigate the education presently provided for allied health professionals in this field and the interest of these workers in further education. A total of 223 questionnaires were returned. One hundred and sixty-five respondents stated that no specific education for allied health professionals was provided in their workplace. Almost all considered that there was a need for more palliative care education for allied health professionals. Seventy-five per cent said they were interested in distance education in palliative care. The implications of these findings for further training are discussed, as well as the development of a post-graduate distance education package.