'Bare-bones' to 'silver linings': lessons on integrating a palliative approach to care in long-term care in Western Canada.

BACKGROUND: 'Whole-person' palliative approaches to care (PAC) are important for enhancing the quality of life of residents with life-limiting conditions in long-term care (LTC). This research is part of a larger, four province study, the 'SALTY (Seniors Adding Life to Years)' project to address quality of care in later life. A Quality Improvement (QI) project to integrate a PAC (PAC-QI) in LTC was implemented in Western Canada in four diverse facilities that varied in terms of ownership, leadership models, bed size and geography. Two palliative 'link nurses' were hired for 1 day a week at each site over a two-year time frame to facilitate a PAC and support education and training. This paper evaluates the challenges with embedding the PAC-QI into LTC, from the perspectives of the direct care, or front-line team members. Sixteen focus groups were undertaken with 80 front-line workers who were predominantly RNs/LPNs (n = 25), or Health Care Aides (HCAs; n = 32). A total of 23 other individuals from the ranks of dieticians, social workers, recreation and rehabilitation therapists and activity coordinators also participated. Each focus group was taped and transcribed and thematically analyzed by research team members to develop and consolidate the findings related to challenges with embedding the PAC. RESULTS: Thematic analyses revealed that front-line workers are deeply committed to providing high quality PAC, but face challenges related to longstanding conditions in LTC notably, staff shortages, and perceived lack of time for providing compassionate care. The environment is also characterized by diverse views on what a PAC is, and when it should be applied. Our research suggests that integrated, holistic and sustainable PAC depends upon access to adequate resources for education, training for front-line care workers, and supportive leadership. CONCLUSIONS: The urgent need for integrated PAC models in LTC has been accentuated by the current COVID-19 pandemic. Consequently, it is more imperative than ever before to move forwards with such models in order to promote quality of care and quality of life for residents and families, and to support job satisfaction for essential care workers.

Conceptual foundations of a palliative approach: a knowledge synthesis.

BACKGROUND: Much of what we understand about the design of healthcare systems to support care of the dying comes from our experiences with providing palliative care for dying cancer patients. It is increasingly recognized that in addition to cancer, high quality end of life care should be an integral part of care that is provided for those with other advancing chronic life-limiting conditions. A "palliative approach" has been articulated as one way of conceptualizing this care. However, there is a lack of conceptual clarity regarding the essential characteristics of a palliative approach to care. The goal of this research was to delineate the key characteristics of a palliative approach found in the empiric literature in order to establish conceptual clarity. METHODS: We conducted a knowledge synthesis of empirical peer-reviewed literature. Search terms pertaining to "palliative care" and "chronic life-limiting conditions" were identified. A comprehensive database search of 11 research databases for the intersection of these terms yielded 190,204 documents. A subsequent computer-assisted approach using statistical predictive classification methods was used to identify relevant documents, resulting in a final yield of 91 studies. Narrative synthesis methods and thematic analysis were used to then identify and conceptualize key characteristics of a palliative approach. RESULTS: The following three overarching themes were conceptualized to delineate a palliative approach: (1) upstream orientation towards the needs of people who have life-limiting conditions and their families, (2) adaptation of palliative care knowledge and expertise, (3) operationalization of a palliative approach through integration into systems and models of care that do not specialize in palliative care. CONCLUSION: Our findings provide much needed conceptual clarity regarding a palliative approach. Such clarity is of fundamental importance for the development of healthcare systems that facilitate the integration of a palliative approach in the care of people who have chronic life-limiting conditions.

'Close to' a palliative approach: nurses' and care aides' descriptions of caring for people with advancing chronic life-limiting conditions.

AIMS AND OBJECTIVES: The purpose of the study was to examine nurses' and nursing assistants' perspectives of a palliative approach in a variety of nursing care settings that do not specialise in palliative care. BACKGROUND: Ageing populations worldwide are drawing increasing attention to palliative care. In particular, people with advancing chronic life-limiting conditions often have unmet needs and may die in acute medical, residential care and home health settings without access to palliative care. A palliative approach offers an upstream orientation to adopt palliative care principles to meet the needs of people with life-limiting chronic conditions, adapt palliative care knowledge to other chronic illness conditions, and integrate and contextualise this knowledge within the healthcare system (Sawatzky et al. 2016). DESIGN: A qualitative study using the method of interpretive description carried out by a nursing research-practice collaborative, Initiative for a Palliative Approach: Evidence and Leadership (iPANEL). METHODS: Twenty-five nurses and five nursing assistants from across British Columbia, Canada participated in interviews and focus groups. Thematic analysis was used to analyse the data. RESULTS: The overarching theme was that of participants close to a palliative approach in that they cared for people who would benefit from a palliative approach, they were committed to providing better end-of-life care, and they understood palliative approach as an extension of specialised palliative care services. Participants varied in their self-reported capacity to integrate a palliative approach, as they were influenced by role clarity, interprofessional collaboration and knowledge. CONCLUSIONS: Integration of a palliative approach requires a conceptual shift and can be enhanced through interpersonal relationships and communication, role clarification and education. RELEVANCE TO CLINICAL PRACTICE: Nurses care for people with advancing chronic life-limiting conditions in a variety of settings who would benefit from a palliative approach.

A palliative approach to care of residents with dementia.

Dementia is a progressive, life-limiting illness. People with the condition who move into a care home deserve palliative care. This article discusses an interprofessional pilot workshop for direct care providers held in a care home in British Columbia, Canada. The workshop aimed to incorporate a palliative approach into dementia care for residents. Workshop development, teaching strategies, evaluation and outcomes are shared. The four-hour workshop was structured to promote critical reflection and challenge participants to consider that people with dementia and their families need palliative care much earlier than during the last days of life. Commitment to change statements gathered as part of the workshop indicated that participation increased knowledge, skill and confidence to incorporate a palliative approach into care for people with advanced dementia and their families.

Home care nurses' decisions about the need for and amount of service at the end of life.

AIMS: We explore home care nurse decision-making about the need for and amount of service by clients and families at the end of life. We identify factors nurses refer to when describing these decisions, situated within contextual features of nursing practice. BACKGROUND: Home care nurses are often responsible for decisions which have an impact on the access of clients and families to services at the end of life. Understanding how these decisions, are made, factors that are considered, and contextual influences is critical for improving access and enhancing care. METHODS: Qualitative data were collected between 2006 and 2008 from two samples of home care nurses: the first group (n = 29) recorded narrative descriptions of decisions made during visits to families. The second group (n = 27) completed in-person interviews focusing on access to care and their interactions with clients and families. Data were analysed with thematic coding and constant comparison. FINDINGS: Participants described assessing client and family needs and capacity. These assessments, at times integrated with considerations about relationships with clients and families, inform predictive judgements about future visits; these judgments are integrated with workload and home health resource considerations. In describing decisions, participants referred to concepts such as expertise, practice ideals and approaches to care. CONCLUSION: Findings highlight the role of considerations of family caregiver capacity, the influence of relationships and the importance of the context of practice, as part of a complete understanding of the complexity of access to care at the end of life.

Articulating the role of relationships in access to home care nursing at the end of life.

In this article, we draw on data collected from two samples of home care nurses to examine how relationships between nurses and family caregivers intersected with access to palliative home care nursing services. Participants referred to relationships as important for their practical benefits and for access to care: good relationships enhanced the nurse's ability to assess clients and families and fostered the family's trust in the nurse's care. Although emphasizing the need to build and maintain relationships (often requiring time), participants simultaneously referred to beliefs about the need to control the personal emotions invoked in relationships so as to ensure appropriate access for clients and families. Future research should further explore how the organizational and resource context, and the culture of palliative care, shape nurses' beliefs about relationships in their practice, the nature and types of relationships that can develop, and both client and family caregivers' access to care.

Core aspects of "empowering" caregivers as articulated by leaders in home health care: palliative and chronic illness contexts.

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.

Self-Perceived Competence of Nurses and Care Aides Providing a Palliative Approach in Home, Hospital, and Residential Care Settings: A Cross-Sectional Survey.

BACKGROUND AND PURPOSE: A palliative approach involves adapting and integrating palliative care knowledge and expertise earlier on and across sectors of care for people who have life-limiting chronic conditions. This study explored the extent to which nurses' and care aides' self-perceived palliative care competence may explain variation in the application of a palliative approach across nursing care settings that do not specialize in palliative care. A secondary objective was to psychometrically evaluate an instrument for measuring self-perceived palliative care competence.Methods and procedures: Data were collected via a cross-sectional survey (N = 1468) of registered nurses, licensed practical nurses, and care aides at 114 randomly selected hospital-based medical units, home care offices, and residential care facilities. The questionnaire included the Palliative Care Nursing Self-Competence Scale. Multilevel logistic regression and multigroup confirmatory factor analyses were conducted. RESULTS: In addition to self-perceived competence, factors associated with a palliative approach include identification of patients who have life-limiting conditions and who would benefit from a palliative approach, and work environment. The psychometric analyses of the Palliative Care Nursing Self-Competence Scale confirmed a 10-dimensional structure, strong internal consistency reliability, and measurement equivalence.Discussion and conclusion: This study provides information for future development and research on interventions for integrating a palliative approach.

Supporting Interprofessional Engagement in Serious Illness Conversations: An Adapted Resource.

Communication is vital to quality palliative care nursing particularly when caring for someone with a chronic life-limiting illness and their family. Conversations about future decline and preferred care are considered challenging and difficult and are often avoided, resulting in missed opportunities for improving care. To support more, earlier, better conversations, health care organizations in British Columbia, Canada, adopted the Serious Illness Care Program inclusive of the Serious Illness Conversation Guide developed by Ariadne Labs. Workshops for interprofessional team members have been held throughout the province. Nurses and allied health identified the need for more guidance in using the guide in the contexts of their clinical practice. Specifically challenging has been prognosis communication that falls within the scope of practice for each profession. Informed by workshop feedback, an expert team of nurse clinicians and educators tailored an interprofessional clinician reference guide to optimize the guide's use across health care settings. In this article, we present the adaptations focusing on (1) the role of nurses and allied health in serious illness communication, (2) prognosis communication, and (3) a range of role-play scenarios specific to nonphysician practice for serious illness conversations that may arise within the process of care.

Telenursing in hospice palliative care.

During the last months of life, many people with advanced illness will be living in their homes. Coping with changing symptoms, and ultimately preparing for death, becomes part of daily life. Whether the ill person is at home for days or for months, they depend on family or friends to be primary caregivers, supported by home-based services. However, after physician and home health offices close, many patients and their caregivers are left to cope alone. The authors describe an innovative partnership between B.C. NurseLine (a provincial tele-triage and health information call centre), the British Columbia Ministry of Health and Fraser Health Hospice Palliative Care program that created after-hours access to care for dying patients and their families in one of Canada's largest health authorities. The article outlines how information and communications technology enabled merging the capacity and expertise of B.C. NurseLine with the expertise of specialized community-based palliative care services to achieve outcomes of improved symptom management, decreased visits to emergency rooms and enhanced support for families who are caring for loved ones at home. For nurses caring for home-based patients, there are lessons to be learned about how to maximize technology to create systems that both improve access to care and are sustainable in the future.

Embedding a Palliative Approach in Nursing Care Delivery: An Integrated Knowledge Synthesis.

A palliative approach involves adapting and integrating principles and values from palliative care into the care of persons who have life-limiting conditions throughout their illness trajectories. The aim of this research was to determine what approaches to nursing care delivery support the integration of a palliative approach in hospital, residential, and home care settings. The findings substantiate the importance of embedding the values and tenets of a palliative approach into nursing care delivery, the roles that nurses have in working with interdisciplinary teams to integrate a palliative approach, and the need for practice supports to facilitate that embedding and integration.

Unravelling the Tensions Between Chronic Disease Management and End-of-Life Planning.

An increasing appreciation for the burden that chronic conditions represent for people and for societies has triggered an evolving body of popular and professional conceptualizations of the nature of the chronic disease challenge. In this discussion article, we trace the trajectory of thinking about chronic illness care, surfacing underlying assumptions and drivers that have shaped current dominant models of service delivery. We note significant gaps in these conceptualizations, especially with respect to the reality that many chronic conditions are life limiting. Contrasting chronic disease theorizing with the conversations that have arisen around end-of-life care for other kinds of health conditions, we argue for a shift in our thinking to accommodate the implications of life limitation in our service delivery planning. We see significant leadership potential in optimizing the role nurses can play across the chronic disease trajectory by integrating the healthy optimism of self-care management with the profound compassion of a person-centered palliative approach.

Translational Scholarship and a Palliative Approach: Enlisting the Knowledge-As-Action Framework.

Based on a retheorized epistemology for knowledge translation (KT) that problematizes the "know-do gap" and conceptualizes the knower, knowledge, and action as inseparable, this paper describes the application of the Knowledge-As-Action Framework. When applied as a heuristic device to support an inquiry process, the framework with the metaphor of a kite facilitates a responsiveness to the complexities that characterize KT. Examples from a KT demonstration project on the integration of a palliative approach at 3 clinical sites illustrate the interrelatedness of 6 dimensions-the local context, processes, people, knowledge, fluctuating realities, and values.

A systematic review of oxygen and airflow effect on relief of dyspnea at rest in patients with advanced disease of any cause.

Oxygen is used frequently to relieve dyspnea in patients with advanced illness. The objective of this study was to critically appraise the scientific basis for oxygen therapy as a therapeutic intervention to manage dyspnea at rest in patients with advanced disease. A systematic search of all relevant databases was done using MeSH terms and appropriate key words. Both investigators reviewed 294 citations and possible articles were retrieved. Using the inclusion and exclusion criteria of the research question, five articles were found to be relevant to the question. The articles were graded according to the study design and qualitatively compared. No systematic reviews of the intervention exist. Study designs were case series and case control studies. These primary studies had small samples and did not have matched or cohort controls, therefore providing only level 4 evidence. There was only a total of 83 patients and the majority of the patients were hypoxic and already on oxygen. This systematic review and critical appraisal found low-grade scientific evidence that oxygen and airflow improve dyspnea in some patients with advanced disease at rest. However, there is no evidence to identify which patients will benefit from airflow or supplemental oxygen or to determine when to use airflow versus supplemental oxygen. Further research is required to provide scientific evidence to evaluate oxygen and airflow effectiveness and determine the place of oxygen and airflow in the management of dyspnea at rest in patients with advanced disease.

Applying research into practice: a guide to determine the next palliative home care nurse visit.

Beyond their own family caregivers, home healthcare nurses play a pivotal role in caring for those dying at home. However, deciding the timing of the next visit for these patients and their families is not straightforward. The Palliative Care: Determining Next Home Care Nurse Visit decision guide supports clinicians in their decision-making process of planning visits to most effectively meet the needs and goals of patients and families during the final months of life.