Use of ISDN video-phones for clients receiving palliative and antenatal home care

We examined the use of ISDN video-phones by health professionals and two types of home care clients: those receiving palliative care and those receiving antenatal care. In the palliative care group, there were four female clients and 15 health professionals; these clients on average had the video-phones at home for six weeks and made 12.5 calls per week. The antenatal care group consisted of six female clients and eight female registered nurses; these clients on average also had the video-phones at home for six weeks and made 12.5 calls per week. Exit interviews were conducted with three clients and eight staff in the palliative care group, and with six clients and three staff in the antenatal care group. Palliative care clients and their families commented that the visual feature of the phone enhanced the care that they received. In the antenatal group, the video-phone was used mainly for booking appointments and arranging home visits. In general, the technology was well received by clients and care providers.     

Retrospective evaluation of palliative care in Romania: the perspective of the involved professionals

Objective: Palliative care at home is a new service provision in Romania. This study evaluated retrospectively, after the patient's death, the provision of care at home from the perspective of professionals directly involved in the care process. The evaluation included assessment of the role of the professional, the functioning of the team, communication with patients and family, and overall judgment. The study is part of the development of palliative care at home, by multi-disciplinary teams in Romania.

Methods: Over a period of eighteen months five teams with a total of 19 professionals, provided palliative care for 103 patients with cancer in its terminal stage. During this period 80 patients died. A questionnaire was sent to the professionals involved. All responded resulting in 181 evaluations. These evaluations are the basis for analysis. The data were analyzed using SPSS.

Results: Of the 181 cases evaluated, 63 indicated an emotional burden on the professionals. GP's and nurses reported such a burden more frequently. A lack of knowledge of how to treat a special case was reported 56 times. This was especially so when a case was judged to be different from other cases, which often included (unexpected) complications. GP's reported cases with complications more frequently than oncologists and nurses. The multidisciplinary teams functioned very satisfactorily in treating patients. Although communication with patients/families was generally judged positively, communication with patients was sometimes viewed as problematic. The overall verdict was that the care delivered to the 80 patients was positive. Most professionals reported that they would deal with the cases in the same way again.

Conclusions: The patients who received palliative care and died, were treated well according to the professionals who evaluated the care process. Improvement of palliative care services at home may be achieved by provision of additional information on (acute) complications. Since palliative care at home is a new phenomenon in Romania, professionals working closely with the patient have to learn to cope with the emotional burden certain cases may include. Eur J Gen Pract 2005;11(3):101–6.     

Can specially trained community care workers effectively support patients and their families in the home setting at the end of life?

Surveys indicate that many Australians would prefer to die at home, but relatively few do. Recognising that patients and their families may not have the support they need to enable end‐of‐life care at home, a consortium of care providers developed, and received funding to trial, the Palliative Care Home Support Program (PCHSP) across seven health districts in New South Wales, Australia. The programme aimed to supplement end‐of‐life care in the home provided by existing multidisciplinary community palliative care teams, with specialist supportive community care workers (CCWs). An evaluation of the service was undertaken, focussing on the self‐reported impact of the service on family carers (FCs), with triangulation of findings from community palliative care teams and CCWs. Service evaluation data were obtained through postal surveys and/or qualitative interviews with FCs, community palliative care teams and CCWs. FCs also reported the experience of their loved one based on 10 items drawn from the Quality of Death and Dying Questionnaire (QODD). Thematic analysis of surveys and interviews found that the support provided by CCWs was valued by FCs for: enabling choice (i.e. to realise end‐of‐life care in the home); providing practical assistance (“hands‐on”); and for emotional support and reassurance. This was corroborated by community palliative care teams and CCWs. Responses by FCs on the QODD items indicated that in the last week of life, effective control of symptoms was occurring and quality of life was being maintained. This study suggests that satisfactory outcomes for patients and their families who wish to have end‐of‐life care in the home can be enabled with the additional support of specially trained CCWs. A notable benefit of the PCHSP model, which provided specific palliative care vocational training to an existing community care workforce, was a relatively rapid increase in the palliative care workforce across the state.     

Societal costs of home and hospital end‐of‐life care for palliative care patients in Ontario,Canada

In Canada, health system restructuring has led to a greater focus on home‐based palliative care as an alternative to institutionalised palliative care. However, little is known about the effect of this change on end‐of‐life care costs and the extent to which the financial burden of care has shifted from the acute care public sector to families. The purpose of this study was to assess the societal costs of end‐of‐life care associated with two places of death (hospital and home) using a prospective cohort design in a home‐based palliative care programme. Societal cost includes all costs incurred during the course of palliative care irrespective of payer (e.g. health system, out‐of‐pocket, informal care‐giving costs, etc.). Primary caregivers of terminal cancer patients were recruited from the Temmy Latner Centre for Palliative Care in Toronto, Canada. Demographic, service utilisation, care‐giving time, health and functional status, and death data were collected by telephone interviews with primary caregivers over the course of patients' palliative trajectory. Logistic regression was conducted to model an individual's propensity for home death. Total societal costs of end‐of‐life care and component costs were compared between home and hospital death using propensity score stratification. Costs were presented in 2012 Canadian dollars ($1.00CDN = $1.00USD). The estimated total societal cost of end‐of‐life care was $34,197.73 per patient over the entire palliative trajectory (4 months on average). Results showed no significant difference (P > 0.05) in total societal costs between home and hospital death patients. Higher hospitalisation costs for hospital death patients were replaced by higher unpaid caregiver time and outpatient service costs for home death patients. Thus, from a societal cost perspective, alternative sites of death, while not associated with a significant change in total societal cost of end‐of‐life care, resulted in changes in the distribution of costs borne by different stakeholders.     

Utilisation of home‐based physician,nurse and personal support worker services within a palliative care programme in Ontario,Canada: trends over 2005–2015

With health system restructuring in Canada and a general preference by care recipients and their families to receive palliative care at home, attention to home‐based palliative care continues to increase. A multidisciplinary team of health professionals is the most common delivery model for home‐based palliative care in Canada. However, little is known about the changing temporal trends in the propensity and intensity of home‐based palliative care. The purpose of this study was to assess the propensity to use home‐based palliative care services, and once used, the intensity of that use for three main service categories: physician visits, nurse visits and care by personal support workers (PSWs) over the last decade. Three prospective cohort data sets were used to track changes in service use over the period 2005 to 2015. Service use for each category was assessed using a two‐part model, and a Heckit regression was performed to assess the presence of selectivity bias. Service propensity was modelled using multivariate logistic regression analysis and service intensity was modelled using log‐transformed ordinary least squares regression analysis. Both the propensity and intensity to use home‐based physician visits and PSWs increased over the last decade, while service propensity and the intensity of nurse visits decreased. Meanwhile, there was a general tendency for service propensity and intensity to increase as the end of life approached. These findings demonstrate temporal changes towards increased use of home‐based palliative care, and a shift to substitute care away from nursing to less expensive forms of care, specifically PSWs. These findings may provide a general idea of the types of services that are used more intensely and require more resources from multidisciplinary teams, as increased use of home‐based palliative care has placed dramatic pressures on the budgets of local home and community care organisations.     

Partners in pediatric palliative care: a program to enhance collaboration between hospital and community palliative care services

The provision of high-quality palliative care services to dying children and their families often requires extensive collaboration between hospital-based and community-based care teams. This article describes the origins and development of the Partners in Pediatric Palliative Care program, which has provided pediatric-specific educational offerings and fostered joint endeavors between a palliative care service located in a tertiary care children's hospital and a wide range of hospice and home care agencies in 5 states. The Partners in Pediatric Palliative Care program is evaluated in terms of the favorable ratings that attendees have given the educational components, the relatively modest direct costs of mounting the regional meetings, and the expanded capacity to provide home-based palliative services to children and families who desire them. The Partners in Pediatric Palliative Care program provides another feasible means for hospitals and community agencies to work together to improve pediatric palliative care.     

Providing a children's palliative care service in the community through fixed-term grants: the staff perspective

BACKGROUND: Children's palliative care services have recently been awarded fixed-term grants, aimed at improving the provision of care for children with life-limiting conditions in the community. We report findings of a qualitative study to investigate the experience of a cohort of community children's nurses from teams involved in setting up or extending community-based children's palliative care services. The purpose of the study was to identify factors that affect service delivery, from the staff perspective, and to suggest ways of promoting their sustainable development. METHODS: Semi-structured telephone interviews were conducted with 21 nurses from 12 different teams providing palliative care for children at home and in hospices. Participants were questioned about the services they provided and their own roles in that provision. NVIVO qualitative data analysis software was used to explore themes arising from the transcribed recorded interviews. FINDINGS: Key findings were the importance of physical location in facilitating multidisciplinary communication, the importance of defining role boundaries between existing and new providers of children's palliative care, and the potentially detrimental impact of insecure funding on referral patterns and recruitment to posts. Staff named the opportunity to offer direct 'hands-on' care to families, access to work-based support and networking opportunities as important factors in helping them cope with the stresses involved in managing finite resources and the emotional challenges of their work. CONCLUSIONS: The maintenance of a mixed caseload with a significant proportion of direct care, provision of ongoing support and clearly defined roles are recommended as means of bolstering the ability of staff to develop their services. The deliberate locating of services to enhance communication between staff and guidance on the preparation of funding applications may further contribute to the sustainability of these services.     

Rural Nonphysician Providers'' Perspectives on Palliative Care Services in Northwestern Ontario, Canada

Most palliative care in rural remote areas is provided by nonphysicians. This paper reports a survey of interdisciplinary rural health service providers (not including physicians) to identify the strengths and weaknesses in palliative care service delivery in a rural and remote region in northwestern Ontario, Canada. Questionnaires were sent to 156 nurses, homemakers, social workers, and pastoral care workers who care for terminally ill persons and their families, and 122 were completed and returned (response rate 78%). Consistent with practice in most rural areas, 90% of respondents were generalists. Respondents identified several problems with palliative care services, including inadequate training for caregivers, inadequate support services for family and professional caregivers, inadequate human resources, and lack of organized volunteer programs. Suggestions for improvements included better education for service providers; better availability of palliative care services; more counseling and support services for patients, family members, and professionals; and greater availability of respite beds. Overall, respondents rated clients' needs as being better met than their own. The most frequently reported problems for care providers were related to the lack of supports for care provision.     

Taking the call-bell home: a qualitative evaluation of Tele-HomeCare for children

Tele-HomeCare (THC) delivers health care at home using telephone technologies. A THC service was developed as an adjunct to existing hospital and community care systems. It connected healthcare providers to children and families at home, during the initial transition from hospital to home, using video-conferencing phones and remote vital signs monitors. The goal was to support the transition from hospital to home, for children with subacute healthcare needs. This paper reports the qualitative evaluation of THC and describes the experiences of families supported by THC. A total of 16 mothers, four fathers and two adolescents from 16 families participated in a series of interviews conducted before, during and after THC. The interviews focused on the impact of THC on the children, on the families, and on their overall healthcare experience. Analysis of their accounts identified three subthemes: the stable child, a sense of security, and the healthcare-proficient parent. These subthemes were consistent across all time points and participants. Together they contributed to the overall effect of THC: the timely reunification of the family at home. THC was consistently reported to be an important resource that supported children and families during the transition from hospital to home. The benefits to children and families observed in this study may have also been a consequence of returning to their home environment, since THC allowed these children to be discharged home at a much earlier period. However, our findings are consistent with previous reports of the benefits of THC. Thus, THC is a successful method of healthcare service delivery that enables a safe return home with professional support provided remotely.     

A protocol for determining differences in consistency and depth of palliative care service provision across community sites

Numerous accounts document the difficulty in obtaining accurate data regarding the extent and composition of palliative care services. Compounding the problem is the lack of standardisation regarding categorisation and reporting across jurisdictions. In this study, we gathered both quantitative and spatial – or geographical – data to develop a composite picture that captures the extent, composition and depth of palliative care in the Canadian province of British Columbia (BC). The province is intensely urban in the southwest and is rural or remote in most of the remainder. For this study, we conducted a detailed telephone survey of all palliative care home care teams and facilities hosting designated beds in BC. We used geographic information systems to geocode locations of all hospice and hospital facilities. In‐home care data was obtained individually from each of five BC regional health authorities. In addition, we purchased accurate road travel time data to determine service areas around palliative facilities and to determine populations outside of a 1‐hour travel time to a facility. With this data, we were able to calculate three critical metrics: (i) the population served within 1 hour of palliative care facilities – and more critically those not served; (ii) a matrix that determines access to in‐home palliative care measured by both diversity of professionals as well as population served per palliative team member; and (iii) a ranking of palliative care services across the province based on physical accessibility as well as the extent of in‐home care. In combination, these metrics provide the basis for identifying areas of vulnerability with respect to not meeting potential palliative care need. In addition, the ranking provides a basis for rural/urban comparisons. Finally, the protocol introduced can be used in other areas and provides a means of comparing palliative care service provision amongst multiple jurisdictions.     

Developing services to support parents caring for a technology-dependent child at home

BACKGROUND: A group of children with complex health care needs have emerged as a result of medical advances and government policies emphasizing the community as the arena for care. Some of these children remain dependent on the medical technology that enabled them to survive and require care of a complex and intensive nature to be carried out by their parents at home. AIMS: To explore the experiences of families caring at home for a technology-dependent child; to examine their needs for practical and other support; and to examine how far services are currently meeting these needs. Methods In-depth interviews were conducted with the parents of 24 technology-dependent children and with 44 health, social care and other professionals. RESULTS: Services in the community were not sufficiently developed to support this group of families. Major problems were identified in the purchasing and provision of both short-term care/home support services and specialist equipment/therapies in the community. Service provision could be poorly planned and co-ordinated at an operational level and few families had a designated key worker. Parents felt that professionals did not always recognize either the emotional costs entailed in providing care of this nature or their expertise in caregiving. Information-giving to parents was often described as poor and participants reported that hospital professionals failed to negotiate the transfer of caregiving responsibility to parents. CONCLUSIONS: Services need to work in partnership with families and with each other at both strategic and operational levels, to develop integrated and co-ordinated services that can meet the needs of this group of families.     

The family and nurse in partnership: providing day-to-day care for rural cancer patients

OBJECTIVE: To explore demands made on family members in managing symptoms and providing for the day-to-day care of relatives with cancer in rural New South Wales and how specialist palliative care nurses support these family members. DESIGN: Cross sectional qualitative study. SETTING: Seven health centres across rural New South Wales that cover a broad geographical area and reflect the diversity in economic conditions, population density and distance from three major urban centres in New South Wales. SUBJECTS: The study involved two groups of participants. The first group consisted of one or more members of families of oncology patients who were accessed through health workers at the seven centres. Nineteen family members from 17 families were interviewed. The second group comprised 10 nursing staff working as specialist palliative care nurses across the same geographical area as the families. MAIN OUTCOME MEASURES: Physical care and symptom management were the two main areas of interest. RESULTS: The rural experience of caring for palliative care patients was challenging, with support nurses needing to take into consideration all aspects of the patients' and families' living environments. CONCLUSION: There is a need for equipment and basic resources to be readily available to practitioners, funding for ongoing education and 24-h care.     

A cost-minimization analysis of oncology home care versus hospital care

We compared the costs of patient care for two groups of 10 oncology patients. The test group was treated at home and had access to 24 h telephone support, and the control group was treated in hospital, either as inpatients or as outpatients. Direct variable costs were provided by health insurance companies. The time invested by the health-care staff was recorded. The amount of time devoted to patients was more uniform in hospital than in the patients' homes, which suggests that patients at home received a less generic, more specific form of care. The nurses spent four times as long caring for home care patients as for hospital patients. The total cost of home care was 64% of that of hospital care, although this difference was not significant. The mean daily costs were three times lower at home than in hospital. All direct costs, except laboratory tests, were lower at home. Pharmaceutical costs were six times lower at home. Telephone support for home oncology care was cost saving and avoided 27 nursing home visits, which represented 35 working hours and Pta270,000 in savings to the health insurance companies.     

‘Where do I go from here’? A cultural perspective on challenges to the use of hospice services

Do hospice services as shaped by a western perspective adequately fulfil the needs of persons from non‐Western cultures? Based on a Western view of palliative care, the vision outlined in the New Zealand Palliative Care Strategy (2001) is to deliver palliative care services, including hospice services, to all patients and their families requiring them in the context of an increasingly pluralistic and multicultural society. It is predicted that over the next two decades the proportion of people identifying as Māori, Pacific and Asian will dramatically increase within New Zealand. Ministry of Health information provided through a GAP analysis identified hospices as facing access‐to‐care pressures for Māori, Pacific and Asian patients. It is therefore critical to identify the challenges to hospice service access for Māori, Asian and Pacific patients. This project involved qualitative interviews with 37 cancer patients (Māori, Pacific and Asian self‐identified ethnicities), whānau/family and bereaved whanua/family, as well as 15 health professionals (e.g. referring GPs, oncologists, allied health professionals) within one District Health Board. Patients and their families included both those who utilised hospice services, as well as those non‐users of hospice services identified by a health professional as having palliative care needs. Challenges to hospice service utilisation reported in the findings include a lack of awareness in the communities of available services, as well as continuing misconceptions concerning the nature of hospice services. Language barriers were particularly reported for Asian patients and their families. Issues concerning the ethnic representativeness of the hospice services staff were raised. The findings highlight the importance of patient and family knowledge of hospice care for utilisation of services. This information can be used for future planning to enable hospices to both provide high quality evidence based palliative care services for patients and families and provide consultative services to primary healthcare providers in the community.     

Organizing palliative care for rural populations: a systematic review of the evidence

BACKGROUND: Palliative care services have developed mostly in urban areas. Rural areas typically are characterized by the lack of well-organized services, with primary care professionals, specifically GPs and community nurses, having to undertake most of the palliative care. Little is known, however, either of their views or of how best to organize palliative care in rural areas. OBJECTIVE: The aim of this study was to conduct a systematic literature review of studies that have examined the organization of rural palliative care and the views of professionals in rural areas. METHOD: Six electronic databases were searched for published studies between 1991 and 2001. Articles had to match against (i). MeSH or keyword terms relating to palliative, terminal or end of life care; and (ii). MeSH or keyword terms relating to rural. A data extraction framework was designed and used systematically by two reviewers to consider research question and method, sample characteristics, selection and size, study quality, summary results and implications. RESULTS: Twenty-six studies were identified. These were mostly questionnaire surveys and reports, and three qualitative studies. No randomized controlled studies or cohort studies were identified. Education and strategic issues were dominant research questions. Both the sample numbers and response rates in the surveys were variable. The qualitative studies had methodological strengths and elicited important views from nurses, carers and families. GPs were, however, unrepresented. Whilst the role of primary care emerged as an important theme, primary care professionals reported difficulties in obtaining education and training. There were also reported problems in symptom control and in the management of emotional issues such as bereavement counselling. Difficulties were also described in accessing specialist services such as hospices, and families were reported as having problems in accessing information. Developments in information technology such as telemedicine were seen as possible solutions to some of the problems. CONCLUSIONS: There is little published work on this topic. Most of the work identifies problems in the delivery of palliative care in rural areas. Whilst primary care professionals are seen as having a key role, there is a need to discover both their views and their needs in this field.     

Work activity analysis of Finnish occupational health professionals

BACKGROUND: Some Finnish studies have dealt with how occupational health nurses divide their working hours but other occupational health professionals have not been evaluated. AIMS: This study describes how occupational health professionals allocate their working hours between main tasks. METHODS: Questionnaires were sent to 250 occupational health professionals, of whom 176 (70%) returned the completed forms. The data were analysed by using frequencies, means and one-way analysis of variance test. RESULTS: Employee-oriented tasks accounted for roughly 50% of working hours from all occupational health professionals. The remaining working hours were shared between workplace visits, co-operation with partners, other occupational health care responsibilities and tasks in other health care fields, especially in the health care centres. These working hours varied greatly between the different occupational health professional groups. All units employed full-time occupational health nurses, but the services of physicians, physiotherapists and psychologists were usually provided part-time or even restricted to a few hours each week because these services were difficult to obtain. Occupational health nurses working in the municipal health care centres spent more time on workplace visits than other nurses. Employee-oriented tasks were emphasized more in physicians', physiotherapists' and psychologists' work, especially in private medical health care units and in the jointly owned health care units. CONCLUSIONS: The amount of time occupational health professionals are able to spend on workplace activities appears to be determined by the type of their employer.     

Empowerment through information: supporting rural families of oncology patients in palliative care

A research project examining the support needs of families caring for a relative in palliative care was conducted in New South Wales in 1997. Data were collected from 19 families and 10 specialist palliative care nurses from eight centres throughout New South Wales using audio-taped interviews. The findings show that information was one of the most important support needs for families to enable them to effectively care for their sick relative. The information provided needed to meet the individual and varying needs of families at different stages of their palliative care journey. Often the families described not knowing what their information needs were until a crisis occurred. Lack of information on a range of areas, from practical resources to providing physical care and managing medications, was problematic. Health professionals need to take responsibility in determining if families are aware of the information available, identify the most appropriate medium for this material and provide it at the pace and time wanted by the individual family.     

Health care needs of community-dwelling older adults

OBJECTIVE: To identify, assess, and rank the importance of health care needs of community-dwelling older adults. METHOD: A structured telephone interview with 107 respondents (physicians, direct service providers and administrators) about the importance of a list of 31 health care needs of older adults. Respondents also identified the single most important health issue facing local older adults now and in the next 5 to 10 years. RESULTS: The five most important health care needs, in descending order, are: care-giver support services, community long-term care services, services for people with dementia/Alzheimer's disease, palliative/end-of-life care, and services for cancer patients and their families. Community long-term care services were identified as the single most important health issue both now and in the next 5 to 10 years. CONCLUSION: The study findings should be of value to health and social service researchers, planners, providers and administrators regarding the needs of community-dwelling older adults.     

Pediatric palliative care instruction for residents: an introduction to IPPC

A 1-day training event for pediatric residents with interdisciplinary staff was held, which was modeled after the Initiative for Pediatric Palliative Care (IPPC). Training included relational communication, cultural humility, pain-symptom management, family-centered care, team problem solving, and strategic planning using didactic, small group, and plenary platforms. Two bereaved parents were co-learners and trainers. Twenty-six interdisciplinary staff participated. A positive impact was measured in new knowledge gained, value in collaborative learning with health care professionals and families, and ability to work with professionals outside participants' own unit. Confidence to advocate for improved pediatric palliative care was also noted. The IPPC curriculum is easily adapted for resident education. Incorporating family members as co-learners and teachers is valuable. Advocacy for pediatric palliative care may follow this type of experience.