Advances in technology and drug therapy have resulted in cancer patients living longer with malignant disease. However, most of these patients will face the end of life much sooner than the general population. Adopting a "palliative approach" is one innovation that has the potential to promote anticipatory planning and promote enhanced end-of-life care. Yet, in much of the western world, this upstream orientation has rarely been achieved. An emphasis on providing palliative care late in the illness trajectory has resulted in many challenges for the care of people with advanced cancer. We highlight a nursing research initiative, The Initiative for a Palliative Approach in Nursing: Evidence and Leadership (iPANEL), that aims to develop evidence to inform the integration of a palliative approach into the care of people with advancing chronic life-limiting conditions. Oncology nurses have an important role to play in facilitating a palliative approach, transforming the ways in which cancer patients are cared for within our health care system.
Quality improvement is an essential feature of the ongoing development of palliative care programs. Little has been written, however, about using quality improvement as a strategy to introduce research concepts to staff and administrators for the purpose of enhancing research readiness in healthcare settings. This article describes such an endeavor. The authors discuss two quality improvement initiatives undertaken by a palliative care program in Canada. These two examples demonstrate how the quality improvement process acted as a catalyst to enhance research readiness.
Home-based family caregivers are often assisted by home care services founded upon principles of health promotion, such as empowerment. Using an interpretive approach and in-depth qualitative interviews, the authors examine descriptions of family empowerment by leaders and managers in the field of home health care in the province of British Columbia, Canada. In a culture of fiscal restraint, dying at home, and self-care, participants described how home care nurses empower family caregivers to meet these objectives. This involves educating and informing caregivers, engaging them in planning and decision-making, and reassuring them that their role is manageable and worthwhile. Though some participants viewed providing supports as empowering (e.g., during times of crisis), others viewed them as disempowering (by promoting dependence). Empowered caregivers were characterized as able to provide home care, confident of their capabilities, and believing that their work is positive and beneficial. The long-term goal of empowerment was characterized as client self-care and/or family care and decreased dependence on formal services.
Although specialized palliative care services in rural areas are scarce, many people who are dying, and their families, want to remain in their homes or within their own community. As such, semirural communities across Canada have developed a variety of initiatives to address this need. The purpose of our paper is to describe a semirural palliative care program located in British Columbia.
We used univariate and bivariate analyses to examine all patients for whom a palliative care bed was requested in the Saanich Peninsula Hospital Palliative Care Unit (PCU) between Jan. 1, 2005, and Dec. 31, 2006.
Data suggest that there is provision of care for local residents in this semirural community. Throughout 2005 and 2006, SPH received a total of 411 requests for a palliative care bed with about three-quarters of admissions coming from other units within the hospital and from local residents.
Use of services data collected from hospital charts can provide valuable information to help inform program and policy decision-makers. Yet such information is limited in relation to answering the question of whether the end-of-life needs of local residents are being met. Future studies should consider input from families and patients to enhance our understanding of the role of a PCU in a semirural environment.
In this study, we explore how client and family caregiver 'empowerment' is interpreted by home-care nurses talking about their practice with palliative (and to a lesser extent, non-palliative) clients and families. We draw on secondary analysis of qualitative data collected through in-person interviews with 27 home-care nurses from a western Canadian health authority. First, we illustrate how the practice ideal of empowerment, in the sense of 'respecting autonomy and choices', can be understood as reflecting home-care nurses' needs to mitigate the emotional impact of feeling unable to effectively help palliative clients/families. Then, we illustrate how the practice ideal of empowerment, in the sense of 'promoting independence', can be understood to accomplish the need to shift responsibility for particular care tasks to clients and family members. Lastly, home-care nurses, talk about 'promoting choices' is also investigated. 'Choice' was framed narrowly with respect to allowing palliative clients and families to determine visit time and frequency. Findings are discussed in relation to the concept of 'responsibilization'.
Families of patients are well poised to comment on the end-of-life (EOL) care received by those patients and can provide feedback to care providers and decision makers. To better understand family-member evaluations of the quality of in-patient EOL care, this study draws on qualitative interview data (n = 24) to identify core aspects of EOL care that are important for family members. Based on this analysis, a conceptual framework of family members' assessments of their experiences with EOL health care services is developed. Findings suggest the need to distinguish between perceived substantive or tangible features of received care, interpretations of the causes and symbolic meanings of that care, and personal and affective outcomes. Practitioners are encouraged to reflect on how behaviours and communications may be interpreted by families. Attention also needs to be given to the changes in practice and organizational decision making that can facilitate more positive experiences for families and patients.
Since the inception of the modern hospice movement, the patient and family caregiver (FCG) have been considered the unit of care; family members are identified as 'clients' within palliative care philosophy. Little research has focused on how FCGs define their roles within the hospice palliative care (HPC) system. The aim of this study was to describe how FCGs of dying cancer patients view their roles in relation to the HPC system. Secondary analysis of interviews with 36 bereaved FCGs in Western Canada, guided by interpretive descriptive methods, found that FCGs perceived themselves as having two roles: client and co-worker. FCGs situated themselves as clients, where they actively sought help from the health care system. FCGs at times also perceived they had been situated as clients by health care providers, and were more resistant to accepting help. In other comments FCGs situated themselves as co-workers, seeking out an active role within the HPC team, whereas in other instances, felt they were situated as co-workers by a health care system with limited financial and human resources. Findings suggest that greater emphasis be placed on helping family members identify suitable interventions depending on how they view their roles within the HPC system. How we define family members in relation to the HPC system may also require reconsideration to reflect a more current conceptualization of realities in end-of-life care.