Whose business is dying? Death, the home and palliative care

The process of dying at home brings the nexus between the paternalism of conventional palliative care and a social understanding of end of life care into sharp focus. Away from institutional places of care, issues of ownership, compliance and communal responsibility are heightened. At this interface, palliative care services are confronted with the irony of relinquishing their 'ownership' of dying whilst leading communities to reclaim their principal role in the business of dying. This benign – but enduring – paternalism remains a barrier to a paradigmatic shift towards a more complete understanding of the business of dying. Whilst nascent attempts to promote community engagement in end of life issues are evident in the interface between palliative care and public health, dying remains, for the most part, the remit of health care services. In this article, I contend that the business of dying is incompletely attended. This lack of attention will be partially redressed here by considering the home as a fitting death scene.

Supporting family caregivers with palliative symptom management: A qualitative analysis of the provision of an emergency medication kit in the home setting

Purpose The purpose of this qualitative analysis was to examine the experiences of family caregivers supporting a dying person in the home setting. In particular, it explores caregivers’ perceptions of receiving palliative care at home when supplied with an emergency medication kit (EMK). Results Most family caregivers described preexisting medication management strategies that were unable to provide timely intervention in symptoms. The EMK was largely viewed as an effective strategy in providing timely symptom control and preventing readmission to inpatient care. Caregivers reported varying levels of confidence in the administration of medication. Conclusion The provision of an EMK is an effective strategy for improving symptom control and preventing inpatient admissions of home-dwelling palliative care patients.

The use of emergency medication kits in community palliative care: An exploratory survey of views of current practice in Australian home-based palliative care services

Improving symptom management for palliative care patients has obvious benefits for patients and advantages for the clinicians, as workload demands and work-related stress can be reduced when the emergent symptoms of patients are managed in a timely manner. The use of emergency medication kits (EMKs) can provide such timely symptom relief. The purpose of this study was to conduct a survey of a local service to examine views on medication management before and after the implementation of an EMK and to conduct a nationwide prevalence survey examining the use of EMKs in Australia. Most respondents from community palliative care services indicated that EMKs were not being supplied to palliative care patients but believed such an intervention could improve patient care.

Therese Godshaw's nee Molling 70th birthday party at the Krakauer home; Boston Portraits Family

Left to right behind table: John Krakauer, Donald, Michael and Robert Godshaw (Children of Hal and Anne), Grandma Therese Godshaw nee Molling, Julius Pick (Grandfather of Robert, Michael and Donald). In front of table: Wendy and Gerry Godshaw (children of Kurt and Edith.

Therese Godshaw's nee Molling 70th birthday party at the Krakauer home; Boston Portraits Family

Left to right behind table: John Krakauer, Donald, Michael and Robert Godshaw (Children of Hal and Anne), Grandma Therese Godshaw nee Molling, Julius Pick (Grandfather of Robert, Michael and Donald). In front of table: Wendy and Gerry Godshaw (children of Kurt and Edith.

Solis-Cohen family papers, 1808-1990.

Correspondence, diaries, acount books, pamphlets, and other personal and professional materials pertaining to Jacob da Silva Solis and his descendents.

Home range and seasonal movements of Black Sea Bass (Centropristis striata) during their inshore residency at a reef in the mid-Atlantic Bight

Black Sea Bass (Centropristis striata) in the mid-Atlantic Bight undertake seasonal cross-shelf movements to occupy inshore rocky reefs and hardbottom habitats between spring and fall. Shelf-wide migrations of this stock are well documented, but movements and home ranges of fish during their inshore residency period have not been described. We tagged 122 Black Sea Bass with acoustic transmitters at a mid-Atlantic reef to estimate home-range size and factors that influence movements (>400 m) at a 46.1-km2 study site between May and November 2003. Activity of Black Sea Bass was greatest and most consistent during summer but declined rapidly in September as water temperatures at the bottom of the seafloor increased on the inner shelf. Black Sea Bass maintained relatively large home ranges that were fish-size invariant but highly variable (13.7–736.4 ha), underscoring the importance of large sample sizes in examination of population-level characteristics of mobile species with complex social interactions. On the basis of observed variations in movement patterns and the size of home ranges, we postulate the existence of groups of conspecifics that exhibit similar space-use behaviors. The group of males released earlier in the tagging period used larger home ranges than the group of males released later in our study. In addition, mean activity levels and the probability of movement among acoustic stations varied among groups of fish in a complex manner that depended on sex. These differences in movement behaviors may increase the vulnerability of male fish to passive fishing gears, further exacerbating variation in exploitation rates for this species among reefs.

Shallow-water benthic habitats of St. John, U.S. Virgin Islands

Coral reef ecosystems of the Virgin Islands Coral Reef National Monument, Virgin Islands National Park and the surrounding waters of St. John, U.S. Virgin Islands are a precious natural resource worthy of special protection and conservation. The mosaic of habitats including coral reefs, seagrasses and mangroves, are home to a diversity of marine organisms. These benthic habitats and their associated inhabitants provide many important ecosystem services to the community of St. John, such as fishing, tourism and shoreline protection. However, coral reef ecosystems throughout the U.S. Caribbean are under increasing pressure from environmental and anthropogenic stressors that threaten to destroy the natural heritage of these marine habitats. Mapping of benthic habitats is an integral component of any effective ecosystem-based management approach. Through the implementation of a multi-year interagency agreement, NOAA’s Center for Coastal Monitoring and Assessment - Biogeography Branch and the U.S. National Park Service (NPS) have completed benthic habitat mapping, field validation and accuracy assessment of maps for the nearshore marine environment of St. John. This work is an expansion of ongoing mapping and monitoring efforts conducted by NOAA and NPS in the U.S. Caribbean and replaces previous NOAA maps generated by Kendall et al. (2001) for the waters around St. John. The use of standardized protocols enables the condition of the coral reef ecosystems around St. John to be evaluated in context to the rest of the Virgin Island Territories and other U.S. coral ecosystems. The products from this effort provide an accurate assessment of the abundance and distribution of marine habitats surrounding St. John to support more effective management and conservation of ocean resources within the National Park system. This report documents the entire process of benthic habitat mapping in St. John. Chapter 1 provides a description of the benthic habitat classification scheme used to categorize the different habitats existing in the nearshore environment. Chapter 2 describes the steps required to create a benthic habitat map from visual interpretation of remotely sensed imagery. Chapter 3 details the process of accuracy assessment and reports on the thematic accuracy of the final maps. Finally, Chapter 4 is a summary of the basic map content and compares the new maps to a previous NOAA effort. Benthic habitat maps of the nearshore marine environment of St. John, U.S. Virgin Islands were created by visual interpretation of remotely sensed imagery. Overhead imagery, including color orthophotography and IKONOS satellite imagery, proved to be an excellent source from which to visually interpret the location, extent and attributes of marine habitats. NOAA scientists were able to accurately and reliably delineate the boundaries of features on digital imagery using a Geographic Information System (GIS) and fi eld investigations. The St. John habitat classification scheme defined benthic communities on the basis of four primary coral reef ecosystem attributes: 1) broad geographic zone, 2) geomorphological structure type, 3) dominant biological cover, and 4) degree of live coral cover. Every feature in the benthic habitat map was assigned a designation at each level of the scheme. The ability to apply any component of this scheme was dependent on being able to identify and delineate a given feature in remotely sensed imagery.

Archaeological Testing at the John Brice II (Jennings-Brice) House, 18AP53, 195 Prince George Street, Annapolis, Maryland

In the fall of 1989, emergency excavation was undertaken in conjunction with restoration work at the John Brice II (Jennings-Brice) House, 18AP53. The exact date of construction for this brick home is problematic, and it was hoped that archaeological investigation could provide conclusive evidence to firmly establish the structure's date of construction. Excavation of one 5 X 5 ft. unit revealed the presence of 10 separate soil layers and four features of note, described in detail below. Unfortunately, no builders trench or similar feature by which we might date the house's construction was recovered. Future plans and possibilities for excavation at the property are outlined with the hopes of performing subsequent work at this rich site. We anticipate a focus on the arrangement and changes in use of the houselot, amassing evidence to support the presence of a vernacular garden on the property during the 18th century, as well as researching refuse disposal patterns, and clues to changing lifeways through the 18th century.

Atopy, home environment and the risk of childhood-onset type 1 diabetes: a population-based case-control study

Background: The marked increases in the incidence of type 1 diabetes in recent decades strongly suggest the role of environmental influences. These environmental influences remain largely unknown.

Risks to home care workers: Professional perspectives

Care at home is fundamental to community care policy, but the simultaneous growth of health and safety regulation has implications for home care services because of the duty of employers towards home care workers. This grounded theory study set in Northern Ireland used data from 19 focus groups and nine semi-structured interviews with a range of health and social services professionals and managers to explore perspectives on planning long term care for older people. Home care workers faced a wide range of hazards in the homes of clients, who themselves were faced with adapting their living habits due to their changing health and care needs and 'risks.' Creative approaches were used to ensure the health and safety of home care workers and simultaneously to meet the choices of clients. Staff experienced feelings of conflict when they judged it necessary to impose their way of providing home care and thus impose their values on clients to create a safe working environment. There was variation between and within organizations in terms of the staff focus on client needs or on their employer responsibility towards home care workers. The planning of home care services must take account of both the choices of clients and the hazards facing home care staff.

Constructing a global understanding of the social ecology of leaving out of home care

Engagement with globalisation is growing in the field of youth transitions from out of home care. This includes cross national exchange of research, policy and practise, regional advocacy networking and global policy development. Furthering this emerging international child welfare perspective requires extending it to countries in the developing world and building conceptual frameworks which encompass a social ecology of care leaving, including its global dimension, the latter needs to address not only the needs, expectations and rights of care leavers but also the theories of change underpinning service design and delivery. Such a model is presented combining resilience and social capital as personal assets situated within a social ecology of support. To illustrate how this provides a means to help engage with the experience of countries where there appears to be very little information available on care leaving, a small scale South African initiative is considered. SA-YES is a youth mentoring project for young people leaving a variety of out of home placements. Planned as a three-year pilot, initial results are encouraging but require more rigorous evaluation focusing on program process and outcomes, quality of interpersonal relationships and synchronisation with cultural expectations and policy environment.

Reducing the psychological distress of family caregivers of home based palliative care patients: Longer term effects from a randomised controlled trial.

Background: Palliative care incorporates comprehensive support of family caregivers because many of them experience burden and distress. However, evidence-based support initiatives are few.

Purpose: We evaluated a one-to-one psychoeducational intervention aimed at mitigating the distress of caregivers of patients with advanced cancer receiving home-based palliative care. We hypothesised that caregivers would report decreased distress as assessed by the General Health Questionnaire (GHQ).

Method: A randomised controlled trial comparing two versions of the delivery of the intervention (one face-to-face home visit plus telephone calls versus two visits) plus standard care to a control group (standard care only) across four sites in Australia.

Results: Recruitment to the one visit condition was 57, the two visit condition 93, and the control 148. We previously reported non-significant changes in distress between times 1 (baseline) and 2 (1-week post-intervention) but significant gains in competence and preparedness. We report here changes in distress between times 1 and 3 (8-week post-death). There was significantly less worsening in distress between times 1 and 3 in the one visit intervention group than in the control group; however, no significant difference was found between the two visit intervention and the control group.

Conclusions: These results are consistent with the aim of the intervention, and they support existing evidence demonstrating that relatively short psychoeducational interventions can help family caregivers who are supporting a dying relative. The sustained benefit during the bereavement period may also have positive resource implications, which should be the subject of future inquiry. © 2014 The Authors. Psycho-Oncology published by John Wiley & Sons Ltd.