Home care for terminally ill Turks and Moroccans and their families in the Netherlands: carers' experiences and factors influencing ease of access and use of services

The aim of this study was to explore the experiences of relatives of elderly terminally ill Turks and Moroccans regarding Dutch professional home care and the barriers to the use this care. Nine Turkish and ten Moroccan family members, who recently looked after dying members of their families, were interviewed using a semi-structured topic list. The data was analyzed using the method described by Glaser and Strauss. The results of this study make it clear that there is no uniform pattern in the use of home care. However, family members who did use home care facilities were all satisfied. Furthermore, on the basis of this study, several factors influencing access to and use of home care were discerned, e.g., illness, family structure, decision making, pressure from the community, information and formal referrals. In addition, the authors found that ‘preferences regarding family care’ influenced all former factors.     

无缝隙护理在优质护理服务中的应用

目的 探讨无缝隙护理在优质护理服务中的应用,旨在为患者提供更人性化的护理,进而提高患者的满意度.方法 通过弹性排班,实行对患者包干到人的工作制度,加强护理的责任心,提高工作积极性.结果患者满意度较改革前提高8.2%,护理工作质量明显提高,护患关系更加和谐.结论 开展无缝隙护理是提供优质护理服务的重要手段,强调以患者为中心的整体护理理念,提高护理服务质量,提升医院的核心竞争力.     

Advance care planning in Belgium and The Netherlands: a nationwide retrospective study via sentinel networks of general practitioners

Context

Advance care planning (ACP) is an important part of patient-centered palliative care. There have been few nationwide studies of ACP, especially in Europe.

Objectives

To investigate the prevalence and characteristics of ACP in two European countries and identify the associated factors.

Methods

A mortality follow-back study was undertaken in 2007 via representative nationwide Sentinel Networks of general practitioners (GPs) in Belgium and The Netherlands using similar standardized procedures. All GPs reported on each non-suddenly deceased patient in their practice. Our main outcome measure was whether or not ACP, that is, an agreement for medical treatment and/or medical decisions in the last phase of life in the case of the patient losing competence, was present.

Results

Among 1072 non-sudden deaths, ACP was done with 34% of patients and most often related to the forgoing of potential life-prolonging treatments in general (24%). In 8% of cases, ACP was made in consultation with the patient and in writing. In 23% of cases, care was planned with the patient’s family only. Multivariate analysis revealed that ACP was more often made with patients if they were capable of decision making during the last three days of life (odds ratio [OR] 3.86; 95% confidence interval [CI] 2.4-6.1), received treatment aimed at palliation in the last week (OR 2.57; 95% CI 1.6-4.2), had contact with a GP in the last week (OR 2.71; 95% CI 1.7-4.1), died of cancer (OR 1.46; 95% CI 1.1-2.0), or died at home (OR 2.16; 95% CI 1.5-3.0).

Conclusion

In these countries, ACP is done with approximately one-third of the studied terminally ill patient population. Most agreements are made only verbally, and care also is often planned with family only. ACP relates strongly both to patient factors and to health care measures performed at the very end of life.     

Negotiations about helpfulness--the relationship between formal and informal care in home care arrangements

Scand J Caring Sci; 2011; 25; 706–715 Negotiations about helpfulness – the relationship between formal and informal care in home care arrangements Background: Informal caregiving by family members is the most common way of caring for sick people at home. However, the number of care arrangements, in which both formal (nurses) and informal (family members) caregivers are involved, is considerable and increasing. Despite implicit assumptions in research that the involvement of nurses in home care arrangements is inherently beneficial, there is evidence that their involvement may have a destabilising effect. Aims: The purpose of this study was to investigate the relationship between nurses and family caregivers and its impact on the actual care that is provided. Method: Eighty‐eight interviews with family caregivers (n = 57) and nurses (n = 31) were conducted in Germany and analysed according to the Grounded Theory methodology. Findings: The relationship between formal and informal care is an encounter of two quite different perspectives that is focused on a negotiation process about caregiving work and the helpfulness of the actions taken and the interventions used. For family caregivers, it is determined by the goal of facilitating work and care for their sick family member. The nurses’ work is characterised by a process of shaping different realities in different homes. The results reveal the processes that lead to the involvement of nurses into home care arrangements and offer a deeper understanding of the negotiation processes between formal and informal caregivers. Conclusions: To provide sufficient support in home care, nurses need the ability to engage in negotiation processes that take the whole home care arrangement into account. Developmental work is needed to design services that are helpful for family caregivers.     

Use and Types of Advance Care Planning Prior to Image-Guided Procedures

BackgroundAdvance care planning is a well-supported means of improving care for patients by clarifying goals and preferences prior to an intervention.PurposeThe purpose of this study was to assess the prevalence and types of advance care planning occurring prior to image-guided procedures.MethodsAll image-guided procedures performed at two healthcare systems over a 3-month period were reviewed, including 1384 procedures for 999 inpatients and 1255 procedures for 1217 outpatients.FindingsOf 2,639 total image-guided procedures, 36% of inpatient procedures and 18% of outpatient procedures had advance care planning documented within 3 months prior to the procedure. Use was more prevalent prior to procedures near the end of life (p < .01) and tended to be less structured forms such as goals of care discussions (p < .01). Use was more common in non-Hispanic and male patients (p = .04).DiscussionAdvance care planning prior to image-guided procedures may be underutilized with disparities in this care.     

Teleological care and the last years of life

The final years of life present challenges for care. In middle‐/high‐income countries, the percentage of people of advanced age in the population is growing, and the dying process continues to become more complex and protracted. We propose that a new understanding of care, ‘teleological care’, be considered as an important response to the contemporary challenges of the final years of life. Teleological care is a philosophy of care built around the root idea of a telos (i.e. end) in three senses: (1) the end of life as a temporal limit; (2) the ends of life as the individual's purpose and meaning; (3) the end of life as the meaning of life as a whole. In its practice, teleological care adheres to principles of (1) fidelity of practitioner to patient; (2) generalism of practitioners; and (3) coordination of care within existing services. With this philosophy and practice, care is administered by generalist health care professionals arranging for flow between care that attempts to reverse, stop or slow the disease process when appropriate, with care to address symptoms, and with care that responds to the difficulties of dying. Teleological care involves already existing programmes in roughly their present forms, serving as an overarching layer of organization added to the existing systems. Teleological care refocuses the concept of care to the patient's perspective with emotional, spiritual and practical support for facing the end of life, and a space for narrative and reflection within a wider circle of care.     

Patient satisfaction and outcome using emergency care practitioners in New Zealand

Objective: A patient satisfaction survey was undertaken in the Kapiti District of the Wellington Region to ascertain patients' experience and opinions of New Zealand's first extended care paramedic (ECP) service before consideration is given to extending it to other locations within the region. Patient outcomes were also analysed for 1 week following ECP care. Methods: One hundred patients, 50 attended by ECPs and 50 by standard emergency ambulance service paramedics, were interviewed by an independent assessor, either in person or by phone according to patient preference. The questionnaire was aimed at comparing the experience of both groups of patients, dividing them into those treated at home and those transferred to the ED. ED and general practice records were then reviewed to determine whether the ECP‐treated patients attended either facility within 7 days and why. Results: Patients were very satisfied with their experience of both groups of paramedics but expressed a clear desire to be treated at home if possible. Of the 50 ECP‐treated patients, 11 were transferred directly to the ED. Only one clinical complication arose over the next 7 days in those treated in the community: a seizure in a patient with refractory epilepsy. Conclusion: The avoidance of unnecessary transfers to hospital is beneficial to patients, the ambulance service and the ED. This study demonstrates that patients are very satisfied with their assessment and treatment by ECPs, endorsing the proposal that the scheme should be extended across the Wellington Region, and perhaps New Zealand.     

End of Life Care and Decision Making: How Far We Have Come,How Far We Have to Go

While enormous progress has been made in improving the quality of care and the decision-making process for patients at the end of life, as a society we still have far to go to ensure that dying patients and their families have a comfortable and dignified death. In particular, reexamination and reconfiguration of our current decision framework is essential as our elderly population with chronic disease and slowly fatal conditions expands. With less certain disease paths and more complex and ambiguous choices, the growth of this geriatric population challenges us to develop a broader conceptualization of end of life care planning, so that end of life considerations are integrated into a larger anticipatory framework addressing options and needs as patients gradually decline. Within this framework hospice becomes a natural, integrated option along a continuum of care planning, rather than an abrupt alternative at a late stage of illness. End of life care planning must positively anticipate a robust array of needs and concerns well beyond the dramatic decisions to withhold or withdraw life-prolonging technologies usually found in advance directives. To embrace this broader framework it is critical that primary care physicians as well as disease specialists receive training in fundamental aspects of both geriatric and palliative care. Professionals from both of these disciplines must share expertise with each other, and should collaborate in advocacy efforts to effectuate changes in the clinical, policy and legislative arenas. [Article copies available for a fee from The Haworth Document Delivery Service: 1-800-342-9678. E-mail address: getinfo@haworthpressinc.com <Website: http://www.haworthpressinc.com>]     

Predictors of elders' and family caregivers' use of formal home services

The purposes of this study were to examine the characteristics of care recipients, caregivers, and their relationship to predict the use of formal services in the home by functionally impaired elders, and to explore the effect of informal care on formal service use in the home. A secondary analysis of data from the informal caregiver questionnaire and the community survey of the 1989 National Long-Term Care Survey was performed using logistic regression analysis. Results showed that the utilization of formal services was less frequent as the hours of informal care increased. Care recipient characteristics that emerged as important predictors included residence in elder housing, recent hospitalization, gender, limitations in activities of daily living, recipient of Medicaid, age, quantity of informal care, and number of household members. Important caregiver characteristics included difficulty getting around outside, rearrangement of work hours, and bowel and bladder care performed by female caregivers. The findings from this study support the consideration of both care recipient and caregiver characteristics when predicting the utilization of formal service use in the home. Data also support the development of interventions to promote the caregiving process. © 1998 John Wiley & Sons, Inc. Res Nurs Health 21:533–543, 1998     

End-of-life care pathways in acute and hospice care: an integrative review

ContextOver the past decade, there has been widespread adoption of end-of-life care pathways as a tool to better manage care of the dying in a variety of care settings. The adoption of various end-of-life care pathways has occurred despite lack of robust evidence for their use.ObjectivesThis integrative review identified published studies evaluating the impact of an end-of-life care pathway in the acute and hospice care setting from January 1996 to April 2010.MethodsA search of the electronic databases Scopus and Cumulative Index of Nursing and Allied Health Literature as well as Medline and the World Wide Web were undertaken. This search used Medical Subject Headings key words including “end-of-life care,” “dying,” “palliative care,” “pathways,” “acute care,” and “evaluation.” Articles were reviewed by two authors using a critical appraisal tool.ResultsThe search revealed 638 articles. Of these, 26 articles met the inclusion criteria for this integrative review. No randomized controlled trials were reported. The majority of these articles reported baseline and post implementation pathway chart audit data, whereas a smaller number were local, national, or international benchmarking studies. Most of the studies emerged from the United Kingdom, with a smaller number from the United States, The Netherlands, and Australia.ConclusionExisting data demonstrate the utility of the end-of-life pathway in improving care of the dying. The absence of randomized controlled trial data, however, precludes definitive recommendations and underscores the importance of ongoing research.     

国际居家护理模式现况与研究进展

随着全球老龄化的加剧,居家护理成为健康养老的新理念。如何为老年人提供连续实用、经济便利的居家照护服务,已成为各个国家长期照护体系改革的目标。目前国际上具有代表性的居家护理体系包括私人及社会保险支付费用、私有机构提供服务的模式(美国模式);政府支付费用、私有机构提供服务为主的模式(加拿大模式);政府与个人共同支付费用、多元化服务提供主体的模式(澳大利亚模式);保险支付费用、多元化服务提供主体的模式(日本模式)。本文总结以美国、加拿大、澳大利亚、日本为代表的居家护理模式,阐述居家护理的核心要素,分析其特征及优缺点,提出我国应借鉴其他国家居家护理的长处,结合我国社会制度和经济水平的特点,创建符合国情的居家护理模式。