Experiences of carers supporting dying renal patients managed without dialysis

Aim: To explore the impact of being a family carer to patients with stage 5 chronic kidney disease managed without dialysis.
Background: Increasing numbers of patients with renal disease worldwide are making the decision not to embark on dialysis. This group has significant physical and psychological symptom burdens similar to or greater than those in advanced cancer patients. Little is known about the impact on family carers.
Design: Exploratory, qualitative design.
Methods: The study was undertaken with 19 carers caring for patients managed in a Renal Supportive Care Service in the UK between 2006–2008. Sixty-one semi-structured interviews and detailed field notes inform the analysis.
Findings: ‘Caring from diagnosis to death’ was the overarching theme illustrated by three sub-themes: (i) Caregiver's plight – making sense of the disease and potential deterioration; (ii) Having to care indefinitely; and (iii) Avoiding talk of death. ‘Caring from diagnosis to death’ coincides with an original concept analysis of renal supportive care, which is considered an adjunct to the management of patients with renal disease at all stages of their illness.
Conclusion: There is a clear need for further research internationally and theory-based nursing interventions to support carers of patients managed without dialysis. The development of a holistic, integrated care pathway based on carer perspectives, which includes identification of information needs related to original diagnosis, associated comorbidities, treatment options, prognosis, and assistance in developing strategies to manage communication with patients as the end of life approaches, is required.

Effect of preventive primary care outreach on health related quality of life among older adults at risk of functional decline: Randomised controlled trial

Objective: To evaluate the impact of a provider initiated primary care outreach intervention compared with usual care among older adults at risk of functional decline. Design: Randomised controlled trial. Setting: Patients enrolled with 35 family physicians in five primary care networks in Hamilton, Ontario, Canada. Participants Patients: were eligible if they were 75 years of age or older and were not receiving home care services. Of 3166 potentially eligible patients, 2662 (84%) completed the validated postal questionnaire used to determine risk of functional decline. Of 1724 patients who met the risk criteria, 769 (45%) agreed to participate and 719 were randomised. Intervention: The 12 month intervention, provided by experienced home care nurses in 2004-6, consisted of a comprehensive initial assessment using the resident assessment instrument for home care; collaborative care planning with patients, their families, and family physicians; health promotion; and referral to community health and social support services. Main outcome measures: Quality adjusted life years (QALYs), use and costs of health and social services, functional status, self rated health, and mortality. Results: The mean difference in QALYs between intervention and control patients during the study period was not statistically significant (0.017, 95% confidence interval -0.022 to 0.056; P=0.388). The mean difference in overall cost of prescription drugs and services between the intervention and control groups was not statistically significant, (-$C165 (£107; €118; $162), 95% confidence interval -$C16 545 to $C16 214; P=0.984). Changes over 12 months in functional status and self rated health were not significantly different between the intervention and control groups. Ten patients died in each group. Conclusions: The results of this study do not support adoption of this preventive primary care intervention for this target population of high risk older adults. Trial registration: Clinical trials NCT00134836.

A Qualitative Evaluation of the Provision of Bereavement Care Accessed by Service Users Living in a Health and Social Care Trust Area in Northern Ireland

Within the health and social care sector in the United Kingdom, the
management of death and bereavement has become increasingly
challenging. This service evaluation sought to explore the bereavement
care offered to individuals living in one Health and Social Care
Trust catchment area of Northern Ireland. Qualitative interviews
were conducted with key government and voluntary agency staff.
The findings indicated that much of the bereavement provision is
based on the interest and initiative of individual staff members, with
few processes to assess the level of bereavement care needed and those
best skilled to provide it. Recommendations are made for a bereavement
care strategy that outlines a bereavement needs assessment process,
identifying the scope of interventions and protocols for practice.

The End of the Urban-Rural Divide?

The urban-rural divide in China was an entrenched feature of Chinese society in the Maoist era. This divide generated and continues to generate inequality as between the rural population and the urban population. In post-Deng China, legal and administrative distinctions between urban and rural have become blurred, especially with the development of rural-urban migration. Nevertheless, the urban-rural divide still exists, and the income of farmers is below that of urban residents. In this paper, it is argued that the emergence of the phenomenon of “quasi-commons” in rural China, crossing the “borders” of the urbanrural divide, may increase farmers’ income in the future and bridge this divide. The paper focuses on different forms of “quasi-commons” (the sharing and use of communal land) emerging in rural areas, including the farmland shareholding cooperatives and transforming rural land management rights into shares in joint ventures. There are divergent views held by Chinese academics and policy makers about “quasi-commons” in rural China, as well as the direction of change in the rural land system. However, most of the proposals for reform have been polarized between nationalization and privatization of rural land. Looking beyond this “boundary thinking” and drawing on the discourses of “the commons” (for example, the writings of Hardin, Heller and Ostrom), this paper analyses the theoretical models of both the nationalization and privatization schemes and their shortcomings. The present essay also analyses the prospect for, and the barriers to the emerging commons in rural China.

Quality of care for residents dying in Ontario long-term care facilities:Findings from a survey of directors of care

The purpose of this study was to collect information on the practice of end-of-life (EOL) care in long-term care (LTC) facilities in the Province of Ontario, Canada. A cross-sectional survey of directors of care in all licensed LTC facilities in the province was conducted between September 2003 and April 2004. Directors of care from 426 (76% response rate) facilities completed the postal survey questionnaire. The survey results identified communication problems between service providers and families, inadequate staffing levels to provide quality care to dying residents, and the need for training to improve staff skills in providing EOL care. Directors of care endorsed the use of a number of strategies that would improve the care of dying residents. Logistic regression analysis identified the eight most important items predictive of facility staff having the ability to provide quality EOL care. The findings contribute to the current discussion on policies for meeting the care needs of residents in LTC facilities until life's end. © 2006 Centre for Bioethics, IRCM.

The spirit of palliative practice:A qualitative inquiry into the spiritual journey of palliative care physicians

Objective: Much is known about the important role of spirituality in the delivery of multidimensional care for patients at the end of life. Establishing a strong physician-patient relationship in a palliative context requires physicians to have the self-awareness essential to establishing shared meaning and relationships with their patients. However, little is known about this phenomenon and therefore, this study seeks a greater understanding of physician spirituality and how caring for the terminally ill influences this inner aspect. Method: A qualitative descriptive study was used involving face-to-face interviews with six practicing palliative care physicians. Results: Conceptualized as a separate entity from religion, spirituality was described by participants as a notion relating to meaning, personal discovery, self-reflection, support, connectedness, and guidance. Spirituality and the delivery of care for the terminally ill appeared to be interrelated in a dynamic relationship where a physician's spiritual growth occurred as a result of patient interaction and that spiritual growth, in turn, was essential for providing compassionate care for the palliative patient. Spirituality also served as an influential force for physicians to engage in self-care practices. Significance of results: With spirituality as a pervasive force not only in the lives of palliative care patients, but also in those of healthcare providers, it may prove to be beneficial to use this information to guide future practice in training and education for palliative physicians in both the spiritual care of patients and in practitioner self care. Copyright © Cambridge University Press 2010.

A proposed systems approach to the evaluation of integrated palliative care

Background. There is increasing global interest in regional palliative care networks (PCN) to integrate care, creating systems that are more cost-effective and responsive in multi-agency settings. Networks are particularly relevant where different professional skill sets are required to serve the broad spectrum of end-of-life needs. We propose a comprehensive framework for evaluating PCNs, focusing on the nature and extent of inter-professional collaboration, community readiness, and client-centred care. Methods. In the absence of an overarching structure for examining PCNs, a framework was developed based on previous models of health system evaluation, explicit theory, and the research literature relevant to PCN functioning. This research evidence was used to substantiate the choice of model factors. Results. The proposed framework takes a systems approach with system structure, process of care, and patient outcomes levels of consideration. Each factor represented makes an independent contribution to the description and assessment of the network. Conclusions. Realizing palliative patients' needs for complex packages of treatment and social support, in a seamless, cost-effective manner, are major drivers of the impetus for network-integrated care. The framework proposed is a first step to guide evaluation to inform the development of appropriate strategies to further promote collaboration within the PCN and, ultimately, optimal palliative care that meets patients' needs and expectations. © 2010 Bainbridge et al; licensee BioMed Central Ltd.

A shared care model pilot for palliative home care in a rural area:Impact on symptoms, distress, and place of death

Context: Shared care models integrating family physician services with interdisciplinary palliative care specialist teams are critical to improve access to quality palliative home care and address multiple domains of end-of-life issues and needs. Objectives: To examine the impact of a shared care pilot program on the primary outcomes of symptom severity and emotional distress (patient and family separately) over time and, secondarily, the concordance between patient preferences and place of death. Methods: An inception cohort of patients (n = 95) with advanced, progressive disease, expected to die within six months, were recruited from three rural family physician group practices (21 physicians) and followed prospectively until death or pilot end. Serial measurement of symptoms, emotional distress (patient and family), and preferences for place of death was performed, with analysis of changes in distress outcomes assessed using t-tests and general linear models. Results: Symptoms trended toward improvement, with a significant reduction in anxiety from baseline to 14 days noted. Symptom and emotional distress were maintained below high severity (7-10), and a high rate of home death compared with population norms was observed. Conclusion: Future controlled studies are needed to examine outcomes for shared care models with comparison groups. Shared care models build on family physician capacity and as such are promising in the development of palliative home care programs to improve access to quality palliative home care and foster health system integration. © 2011 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

Reaching common ground:A patient-family-based conceptual framework of quality EOL care

Improvement in the quality of end-of-life (EOL) care is a priority health care issue since serious deficiencies in quality of care have been reported across care settings. Increasing pressure is now focused on Canadian health care organizations to be accountable for the quality of palliative and EOL care delivered. Numerous domains of quality EOL care upon which to create accountability frameworks are now published, with some derived from the patient/family perspective. There is a need to reach common ground on the domains of quality EOL care valued by patients and families in order to develop consistent performance measures and set priorities for health care improvement. This paper describes a meta-synthesis study to develop a common conceptual framework of quality EOL care integrating attributes of quality valued by patients and their families. © 2005 Centre for Bioethics, IRCM.