Among neighbors: an ethnographic account of responsibilities in rural palliative care.
TL;DR: Insight is provided into the complex ways rurality influences understandings of responsibility in palliative care and proposed healthcare policy and practice changes, particularly those that originate from outside of the community, should undergo a careful analysis of their potential impact on the longstanding negotiated responsibilities.
Abstract: Objective Building high quality palliative care in rural areas must take into account the cultural dimensions of the rural context. The purpose of this qualitative study was to conduct an exploration of rural palliative care, with a particular focus on the responsibilities that support good palliative care from rural participants' perspectives. Method This ethnographic study was conducted in four rural communities in Western Canada between June 2009 and September 2010. Data included 51 days of field work, 95 semistructured interviews, and 74 hours of direct participant observation. Thematic analysis was used to provide a descriptive account of rural palliative care responsibilities. Results Findings focus on the complex web of responsibilities involving family, healthcare professionals, and administrators. Family practices of responsibility included provision of direct care, managing and coordinating care, and advocacy. Healthcare professional practices of responsibility consisted of interpreting their own competency in relation to palliative care, negotiating their role in relation to that interpretation, and individualizing care through a bureaucratic system. Administrators had three primary responsibilities in relation to palliative care delivery in their community: navigating the politics of palliative care, understanding the culture of the community, and communicating with the community. Significance of results Findings provide important insights into the complex ways rurality influences understandings of responsibility in palliative care. Families, healthcare providers, and administrators work together in fluid ways to support high quality palliative care in their communities. However, the very fluidity of these responsibilities can also work against high quality care, and are easily disrupted by healthcare changes. Proposed healthcare policy and practice changes, particularly those that originate from outside of the community, should undergo a careful analysis of their potential impact on the longstanding negotiated responsibilities.
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TL;DR: Using a nurse navigator to facilitate early palliative care for rural older adults living with advanced chronic illness is a promising innovation for meeting the needs of this population.
Abstract: Background Few services are available to support rural older adults living at home with advancing chronic illness. The objective of this project was to pilot a nurse-led navigation service to provide early palliative support for rural older adults and their families living at home with advancing chronic illness. Methods Twenty-five older adults and 11 family members living with advancing chronic illness received bi-weekly home visits by a nurse navigator over a 2-year period. Navigation services included symptom management, education, advance care planning, advocacy, mobilization of resources, and psychosocial support. The nurse navigator collected longitudinal data on older adult and family needs, and older adult quality of life and healthcare utilization. Results Satisfaction with the service was high. There was no attrition over the 2-year period except through death, and few cancelled visits, indicating a high degree of acceptability of the intervention. The navigator addressed complex, multi-faceted needs through connecting health, social, and informal community resources. Participants who indicated a preferred place of death were able to die in that preferred place ( n = 7). Emergency room use by participants was minimal and largely unpreventable by the nurse navigator. Longitudinal health-related quality of life scores for many participants were poor, lending further support to the need for more focused attention to this upstream palliative population. Conclusions Using a nurse navigator to facilitate early palliative care for rural older adults living with advanced chronic illness is a promising innovation for meeting the needs of this population. Further research is required to evaluate outcomes on a larger scale.
40 citations
Cites background from "Among neighbors: an ethnographic ac..."
...whom personal and professional relationships co-exist, and the commitment of local palliative champions, support good care [24]....
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TL;DR: Articulation of the rural voice is increasing; however, there still remain limited published rural studies reporting on patient and family caregivers’ experiences and perspectives on rural end-of-life care.
Abstract: Background:End-of-life care must be relevant to the dying person and their family caregiver regardless of where they live. Rural areas are distinct and need special consideration. Gaining end-of-life care experiences and perspectives of rural patients and their family caregivers is needed to ensure optimal rural care.Aims:To describe end-of-life care experiences and perspectives of rural patients and their family caregivers, to identify facilitators and barriers to receiving end-of-life care in rural/remote settings and to describe the influence of rural place and culture on end-of-life care experiences.Design:A systematic literature review utilising the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines.Data sources:Four databases (PubMed, CINAHL, Scopus and Web of Science) were searched in January 2016, using a date filter of January 2006 through January 2016; handsearching of included article references and six relevant journals; one author contacted; pre-defined search terms...
37 citations
28 citations
TL;DR: Findings show promise that disparities in access between urban and rural settings are not unavoidable, and positive aspects of rural and remote communities may be leveraged to improve care at end of life.
Abstract: INTRODUCTION Palliative care has been both more available and more heavily researched in urban than in rural areas. This research studies factors associated with palliative care program (PCP) enrollment and place of death across the urban/rural continuum. Importantly, rather than simply comparing urban and rural areas, this article examines how the effects of demographic, geographic, and socioeconomic factors differ across service delivery settings within the Canadian province of Nova Scotia. METHODS This study linked PCP patient enrollment files from three districts to Nova Scotia vital statistics death certificate data. Postal codes of the decedents were mapped to 2006 Canadian dissemination area census data. The study examined 23 860 adult residents of three district health authorities, who died from 2003 to 2009 with a terminal illness, organ failure, or frailty and who were not nursing home residents. Demographic, geographic, and socioeconomic predictors of PCP enrollment and place of death were investigated using logistic regression across the entire study area, and stratified by district of residence. Univariate and multivariate (adjusted) odds ratios (OR) and their 95% confidence intervals (CI) are reported. RESULTS Overall, 40.3% of the study subjects were enrolled in a PCP, and 73.4% died in hospital. Odds of PCP enrollment were highest for females (OR: 1.30; 95%CI: 1.22, 1.39), persons aged 50-64 years (OR: 1.50; 95%CI: 1.35, 1.67), and persons with a terminal disease such as cancer. While in overall multivariate analysis residents of census metropolitan areas and agglomerations had higher odds of enrollment (OR: 1.51; 95%CI: 1.29, 1.77), and those at greater distance from a PCP had lower odds (OR: 0.33; 95%CI: 0.27, 0.40), stratified analysis revealed a more nuanced picture. Within each district, travel time to PCP remained a significant predictor of enrollment but the magnitude of its effect differed markedly. There was no consistent relationship with urban/rural residence, social deprivation, or economic deprivation. Enrollment in a PCP was associated with lower adjusted odds of dying in hospital (OR: 0.78; 95%CI: 0.72, 0.84), and those living at greater distance from a PCP had higher odds of hospitalization (OR: 1.52; 95%CI: 1.28, 1.81), but there was no consistent relationship for urban/rural residence or across districts. CONCLUSIONS Geographic patterns of PCP enrollment and place of death differed by district, as did the impact of economic and social deprivation. Analysis and reporting of population-based indicators of access should be grounded in an understanding of the characteristics of geographic areas and local context of health services. Although more research is needed, these findings show promise that disparities in access between urban and rural settings are not unavoidable, and positive aspects of rural and remote communities may be leveraged to improve care at end of life.
25 citations
TL;DR: The ethical complexity that characterizes nurses' participation in MAiD is considered and strategies to support nurses' moral reflection and imagination as they seek to make sense of their decision to participate or not are proposed.
Abstract: With the advent of legalized medical assistance in dying [MAiD] in Canada in 2016, nursing is facing intriguing new ethical and theoretical challenges. Among them is the concept of conscientious objection, which was built into the legislation as a safeguard to protect the rights of healthcare workers who feel they cannot participate in something that feels morally or ethically wrong. In this paper, we consider the ethical complexity that characterizes nurses' participation in MAiD and propose strategies to support nurses' moral reflection and imagination as they seek to make sense of their decision to participate or not. Deconstructing the multiple and sometimes conflicting ethical and professional obligations inherent in nursing in such a context, we consider ways in which nurses can sustain their role as critically reflective moral agents within a context of a relational practice, serving the diverse needs of patients, families, and communities, as Canadian society continues to evolve within this new way of engaging with matters of living and dying.
16 citations
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Book•
04 Nov 1997
TL;DR: In this article, the authors present a second edition of the first part of a series of essays on the subject of moral philosophy with postscript, with a discussion of some questions about moral understandings.
Abstract: PREFACE TO THE SECOND EDITION PREFACE THE FIRST EDITION PART ONE. THE MIS-EN-SCENE: MORAL PHILOSOPHY NOW 1. The Subject of Moral Philosophy, with Postscript, 2007 2. Where Do Moral Theories Come From? Henry Sidgwick and Twentieth Century Ethics PART TWO. CLEARER VIEWS: AN EXPRESSIVE-COLLABORATIVE MODEL 3. Authority and Transparency The Examples of Feminist Skepticism 4. Charting Responsibilities: From Established Coordinates to Terra Incognita PART THREE. SELF- (AND OTHER) PORTRAITS: WHO ARE WE, AND HOW DO WE KNOW? 5. Picking Up Pieces: Lives, Stories and Integrity 6. Career Selves: Plans, Projects, and Plots in "Whole Life ethics" 7. Made A Slave, Born a Woman: Knowing Others' Places 8. Unnecessary Identities: Representational Practices and Moral Recognition PART FOUR: TESTING SIGHT LINES 9. The Politics of Transparency and the Moral Work of Truth 10. Peripheral Visions, Critical Practice EPILOGUE: SOME QUESTIONS ABOUT MORAL UNDERSTANDINGS NOTES BIBLIOGRAPHY
483 citations
TL;DR: It is recommended that palliative care should be defined as follows: Palliatives care is the person-centred attention to symptoms, psychological, social and existential distress in patients with limited prognosis, in order to optimise the quality of life of patients and their families or close friends.
157 citations
"Among neighbors: an ethnographic ac..." refers background in this paper
...In developed countries, a population aging with multiple chronic illnesses has focused efforts on providing integrated and interdisciplinary palliative services (Ahmedzai et al., 2004; Carstairs, 2005)....
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TL;DR: There is little strong evidence to inform palliative policy and service development in rural settings, which means Coordinated programs of research are clearly required to develop a body of knowledge that is adequate to support effective service and policy development.
Abstract: Background: Access to integrated, palliative care regardless of location of residence is a palliative care standard yet we know such access is limited for those living in rural and remote settings. As a beginning step in the development of research aimed at informing policy and program development, a comprehensive review of the state of knowledge regarding palliative care in rural contexts is required. Purpose: To identify, evaluate and synthesize the published literature on rural palliative care. Design: Comprehensive review. Methods: Computer searches were conducted on PubBMed, ISI Web of Science, PsycInfo, CINAHL, and Ageline using the search terms palliative care, hospice, terminal care, end-of-life care, end-of-life, and rural or remote. Results: One hundred fifty-eight studies were retrieved. After screening using relevance and quality criteria, 79 studies were included in the review. Studies were grouped by subject matter into one of three categories: patient and caregiver perspectives; pr...
123 citations
"Among neighbors: an ethnographic ac..." refers background in this paper
...Although much has been written about interdisciplinary approaches to palliative care in urban contexts, little research to date has focused on palliative care in rural contexts (Robinson et al., 2009)....
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...Much previous research in rural palliative care has emphasized programmatic deficits in rural palliative care and focused on innovative models of delivery (Robinson et al., 2009)....
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TL;DR: A theoretical model is conceptualized that conceptualizes the process of developing palliative care programs in four sequential phases: antecedent community conditions, a catalyst, creating the team, and growing the program.
Abstract: The population in Canada and other developing countries is aging, increasing the need for palliative care services. In rural communities, care of dying people is normally provided by health care professionals as part of a generalist practice, not by palliative care specialists. Despite a lack of specialists and resources, some rural communities have developed local palliative care programs. The goal of this research was to conceptualize rural communities' process of developing palliative care programs using a theoretical perspective of community capacity development. Data were from nine focus groups of interdisciplinary rural health care providers who provided palliative care in seven provinces/territories of Canada. The outcome is a theoretical model that conceptualizes the process of developing palliative care programs in four sequential phases: antecedent community conditions, a catalyst, creating the team, and growing the program. The activities of each phase are outlined. This research offers practical and theoretical knowledge to guide practitioners and planners seeking to develop palliative care programs in other rural communities.
75 citations
"Among neighbors: an ethnographic ac..." refers background in this paper
...Palliative care in rural areas must take into account the important cultural dimensions of the rural context (Kelley, 2007; Kelley et al., 2011)....
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...Several studies done within the Canadian context have pointed to the inherent capacity of rural communities for high quality palliative care (Kelley, 2007; Kelley et al., 2011; Pesut et al., 2011)....
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TL;DR: Although rural E OL care research is not extensive, the existing literature is helpful for realizing the importance of EOL care in rural communities, as well as for conceptualizing and planning EOL Care in rural Communities.
Abstract: : Context: Approximately 20% of North Americans and 25% of Europeans reside in rural areas. Planning and providing end-of-life (EOL) care in rural areas presents some unique challenges. Purpose: In order to understand these challenges, and other important issues or circumstances, a literature search was conducted to assess the state of science on rural EOL care. Methods: The following databases were searched for articles published from 1988 through 2003: EMBASE, Medline, CINAHL, AHMED, Psychinfo, ERIC, HealthStar, Sociological Abstracts, and Cochrane. All articles were systematically reviewed. Findings: Thirty-six research articles were identified. Only 1 randomized controlled trial was located. Most research was single site, small sample, and exploratory/descriptive in design. Four distinct foci in this body of research were noted: (1) identifying and describing differences between urban and rural EOL care; (2) exploring rural EOL care; (3) assessing the EOL needs and wishes of terminally ill or dying persons, their family members, and health care professionals in rural areas; and (4) exploring EOL education for rural EOL care providers. Conclusions: Although rural EOL care research is not extensive, the existing literature is helpful for realizing the importance of EOL care in rural communities, as well as for conceptualizing and planning EOL care in rural communities. One of the chief considerations for rural EOL care is that dying at home is a common wish, with home-based nursing care a key factor for this to become a reality. Another chief consideration is ensuring all rural health care professionals are both prepared for and supported while delivering EOL care.
73 citations
"Among neighbors: an ethnographic ac..." refers background in this paper
...…and scopes of practice tend to be broader in rural areas because of the lack of specialist and multidisciplinary teams (Rosenberg & Canning, 2004; Wilson et al., 2006; Smyth et al., 2010), and a number of recommendations have been made for developing interprofessional teams to improve access to…...
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