Evaluation of the Strengthening a Palliative Approach in Long Term Care (SPA-LTC) programme: a protocol of a cluster randomised control trial.

INTRODUCTION: Despite the high mortality rates in long-term care (LTC) homes, most do not have a formalised palliative programme. Hence, our research team has developed the Strengthening a Palliative Approach in Long Term Care (SPA-LTC) programme. The goal of the proposed study is to examine the implementation and effectiveness of the SPA-LTC programme. METHODS AND ANALYSIS: A cross-jurisdictional, effectiveness-implementation type II hybrid cluster randomised control trial design will be used to assess the SPA-LTC programme for 18 LTC homes (six homes within each of three provinces). Randomisation will occur at the level of the LTC home within each province, using a 1:1 ratio (three homes in the intervention and control groups). Baseline staff surveys will take place over a 3-month period at the beginning for both the intervention and control groups. The intervention group will then receive facilitated training and education for staff, and residents and their family members will participate in the SPA-LTC programme. Postintervention data collection will be conducted in a similar manner as in the baseline period for both groups. The overall target sample size will be 594 (297 per arm, 33 resident/family member participants per home, 18 homes). Data collection and analysis will involve organisational, staff, resident and family measures. The primary outcome will be a binary measure capturing any emergency department use in the last 6 months of life (resident); with secondary outcomes including location of death (resident), satisfaction and decisional conflict (family), knowledge and confidence implementing a palliative approach (staff), along with implementation outcomes (ie, feasibility, reach, fidelity and perceived sustainability of the SPA-LTC programme). The primary outcome will be analysed via multivariable logistic regression using generalised estimating equations. Intention-to-treat principles will be used in the analysis. ETHICS AND DISSEMINATION: The study has received ethical approval. Results will be disseminated at various presentations and feedback sessions; at provincial, national and international conferences, and in a series of manuscripts that will be submitted to peer-reviewed, open access journals. TRIAL REGISTRATION NUMBER: NCT039359.

A pilot evaluation of the Strengthening a Palliative Approach in Long-Term Care (SPA-LTC) program.

BACKGROUND: Despite increased annual mortality in long-term care (LTC) homes, research has shown that care of dying residents and their families is currently suboptimal in these settings. The purpose of this study was to evaluate resident and family outcomes associated with the Strengthening a Palliative Approach in LTC (SPA-LTC) program, developed to help encourage meaningful end of life discussions and planning. METHODS: The study employs a mixed method design in four LTC homes across Southern Ontario. Data were collected from residents and families of the LTC homes through chart reviews, interviews, and focus groups. Interviews with family who attended a Palliative Care Conference included both closed-ended and open-ended questions. RESULTS: In total, 39 residents/families agreed to participate in the study. Positive intervention outcomes included a reduction in the proportion of emergency department use at end of life and hospital deaths for those participating in SPA-LTC, improved support for families, and increased family involvement in the care of residents. For families who attended a Palliative Care Conference, both quantitative and qualitative findings revealed that families benefited from attending them. Residents stated that they appreciated learning about a palliative approach to care and being informed about their current status. CONCLUSIONS: The benefits of SPA-LTC for residents and families justify its continued use within LTC. Study results also suggest that certain enhancements of the program could further promote future integration of best practices within a palliative approach to care within the LTC context. However, the generalizability of these results across LTC homes in different regions and countries is limited given the small sample size.

Palliative Care Models in Long-Term Care: A Scoping Review.

OBJECTIVE: The goal of this scoping review was to identify existing palliative models in long-term care (LTC) homes and differentiate between the key components of each in terms of training/capacity-building strategies; resident, family and staff support; and advance care planning (ACP) and goals-of-care discussions. METHODS: We conducted a scoping review based on established methods to summarize the international literature on palliative models and programs for LTC. We analyzed the data using tabular summaries and content analysis. RESULTS: We extracted data from 46 articles related to palliative programs, training/capacity building, family support, ACP and goals of care. Study results highlighted that three key components are needed in a palliative program in LTC: (1) training and capacity building; (2) support for residents, family and staff; and (3) ACP, goals-of-care discussion and informed consent. CONCLUSION: This scoping review provided important information about key components to be included in a palliative program in LTC. Future work is needed to develop a model that suits the unique characteristics in the Canadian context.

A Stakeholder Analysis of the Strengthening a Palliative Approach in Long-Term Care Model.

OBJECTIVE: The purpose of this study was to conduct a stakeholder analysis of the strengthening a palliative approach to long-term care (SPA-LTC) model and refine it based on feedback from long-term care (LTC) residents and their families, staff, researchers and decision makers. METHODS: We used a mixed-methods design to conduct a stakeholder analysis of the SPA-LTC model that consisted of two sequential components: qualitative focus groups with LTC staff followed by a quantitative survey with key stakeholders. RESULTS: Twenty-one LTC staff provided feedback about the SPA-LTC model after residents relocated to LTC, during advanced illness and at end of life and in the period of grief and bereavement. This feedback helped to guide revisions of the model. According to the survey results, the SPA-LTC model was well received by 35 stakeholders, but its feasibility was questioned. CONCLUSION: The Canadian SPA-LTC model is evidence based and endorsed by LTC staff and stakeholders. Efforts are needed to determine the feasibility of implementing the model to ensure that residents' needs are made a priority while in LTC.

An Analysis of Documents Guiding Palliative Care in Five Canadian Provinces.

ABSTRACTThe purpose of this study was to analyse the consistency and extent of palliative content across high-level guiding documents related to the care of persons residing in Canadian long-term care homes. A systematic search was conducted examining documents at the national level and across five provinces (Alberta, Ontario, Saskatchewan, Manitoba, and Quebec). Twenty-five documents were selected based on inclusion criteria from 273 documents identified in the systematic search. The majority of these documents were created nationally (48%) or in Ontario (28%). Documents varied in palliative topics discussed, and long-term care was discussed minimally. A minimal number of palliative care guiding documents were found. Long-term care specific documents were absent, and all documents lacked consistency on palliative topics. It is imperative that palliative principles are present and consistent in high-level documents in order to improve the quality of life and care for long-term care residents across Canada.

"Who would want to die like that?" Perspectives on dying alone in a long-term care setting.

The discourse of dying alone is negatively weighted and models of a good death identify not dying alone as a key outcome. Understanding why dying alone is viewed negatively and its effects on care is a priority. In separate focus groups with long-term care residents, family caregivers, and staff, we identified evidence for four different perspectives on the importance of presence at the time of death. However, while each individual had their own unique perspective on dying alone, the predominant view expressed across respondent groups was that having human connection near the end of one's life was important.

Meaningful connections in dementia end of life care in long term care homes.

BACKGROUND: Most persons with dementia die in long term care (LTC) homes, where palliative approaches are appropriate. However, palliative approaches have not been widely implemented and there is limited understanding of staff and family experiences of dying and bereavement in this context. METHOD: This descriptive qualitative study explored family and staff experiences of end of life and end of life care for persons with dementia in LTC homes. Eighteen focus groups were conducted with 77 staff members and 19 relatives of persons with dementia at four LTC homes in four Canadian provinces. RESULTS: Three themes emerged: knowing the resident, the understanding that they are all human beings, and the long slow decline and death of residents with dementia. DISCUSSION: Intimate knowledge of the person with dementia, obtained through longstanding relationships, was foundational for person-centred end of life care. Health care aides need to be included in end of life care planning to take advantage of their knowledge of residents with dementia. There were unmet bereavement support needs among staff, particularly health care aides. Persons with dementia were affected by death around them and existing rituals for marking deaths in LTC homes may not fit their needs. Staff were uncomfortable answering relatives' questions about end of life. CONCLUSIONS: Longstanding intimate relationships enhanced end of life care but left health care aides with unmet bereavement support needs. Staff in LTC homes should be supported to answer questions about the trajectory of decline of dementia and death. Further research about residents' experiences of deaths of other residents is needed.

Assessing Palliative Care Content in Dementia Care Guidelines: A Systematic Review.

CONTEXT: Families of persons with dementia continue to report unmet needs during end of life (EOL). Strategies to improve care and quality of life for persons with dementia include development of clinical practice guidelines (CPGs) and an integrative palliative approach. OBJECTIVES: We aimed to assess palliative care content in dementia CPGs to identify the presence or limitations of recommendations and discussion pertaining to common issues or domains affected by illness as described by the Canadian Hospice Palliative Care Association "Square of Care." DESIGN: A systematic review of databases and gray literature was conducted for recent CPGs. Guidelines meeting inclusion criteria were evaluated using the Appraisal of Guidelines for Research and Evaluation II instrument. Quality CPGs were analyzed through organizational template analysis using illness domains described by the "Canadian Hospice Palliative Care Association Model." The study protocol is registered at PROSPERO (CRD 42015025369). RESULTS: Eleven CPGs were selected and analyzed from 3779 citations. Nine guidelines demonstrated the maximum level of content regarding physical, psychological, and social care. Conversely, spiritual care was either absent (three) or minimal (three) in CPGs. Six CPGs did not address loss or grief, and seven CPGs did not address or had minimal content regarding EOL care. CONCLUSIONS: The lack of content surrounding grief represents a gap for this population at high risk for complicated grief and chronic sorrow. Results of this review require attention by CPG developers and researchers to develop evidence-based recommendations surrounding spiritual care, EOL, and grief.

Interdisciplinary Approaches to Managing Pain in Older Adults.

An interdisciplinary approach to managing pain has been widely used in managing specific pain conditions (eg, lower back and fibromyalgia) but not reviewed specifically for older adults. Interdisciplinary approaches have been used in primary, residential long-term, and acute care settings, where a variety of health care professionals work on pain teams to manage pain in older adults. Given the multidimensional nature of pain in older adults, interdisciplinary approaches to managing pain are recommended in practice. This article reviews the rationale supporting an interdisciplinary approach to managing pain in older adults and summarizes studies that have evaluated this approach.

The evaluation of a national interprofessional palliative care workshop.

The purpose of this study was to evaluate the impact of a palliative/end-of-life care workshop on students' perceptions of professional identity, team understanding, and their readiness for interprofessional education (IPE). A before-and-after design was used combining both qualitative and quantitative methods. A survey was completed by 25 undergraduate students from a variety of health care professional schools across Canada, both before and after they attended the five-day workshop. There was a significant increase in students' readiness for IPE, perceptions of professional identity, and team understanding after they attended the palliative care workshop. Students stated that learning about other professionals' backgrounds and becoming more sensitive to other team members and their scopes of practice helped change the way they would practice. The findings from this study will contribute to our understanding of student attitudes around IPE and palliative care.

Role of the nurse practitioner in providing palliative care in long-term care homes.

AIM: The purpose of this study, which was part of a large national case study of nurse practitioner (NP) integration in long-term care (LTC), was to explore the NP role in providing palliative care in LTC. METHODS: Using a qualitative descriptive design, data was collected from five LTC homes across Canada using 35 focus groups and 25 individual interviews. In total, 143 individuals working in LTC participated, including 9 physicians, 20 licensed nurses, 15 personal support workers, 19 managers, 10 registered nurse team managers or leaders, 31 allied health care providers, 4 NPs, 14 residents, and 21 family members. The data was coded and analysed using thematic analysis. FINDINGS: NPs provide palliative care for residents and their family members, collaborate with other health-care providers by providing consultation and education to optimise palliative care practices, work within the organisation to build capacity and help others learn about the NP role in palliative care to better integrate it within the team, and improve system outcomes such as accessibility of care and number of hospital visits. CONCLUSIONS: NPs contribute to palliative care in LTC settings through multifaceted collaborative processes that ultimately promote the experience of a positive death for residents, their family members, and formal caregivers.

To report or not to report: a descriptive study exploring ICU nurses' perceptions of error and error reporting.

OBJECTIVE: To explore the emergent factors influencing nurses' error reporting preferences, scenarios were developed to probe reporting situations in the intensive care unit. SETTING: Three Canadian intensive care unit settings including: one urban academic tertiary hospital, one community hospital and one academic paediatric hospital. RESEARCH METHODOLOGY/DESIGN: Using qualitative descriptive methodology, semi-structured interviews were guided by a script which included a series of both closed and open-ended questions. One near miss and four error scenarios were used as prompts during the interview. Four of the five scenarios were identical across all the three sites; however, one scenario differed in the community site to reflect the distinct practice environment. MAIN OUTCOME MEASURES: Three key points of analysis included: nurses' error perception, decision to report the scenario and style of reporting (formal and/or informal). RESULTS: At least 81% of the 37 participants stated that they would report the events in the respective scenarios. Deviations from standards of practice emerged as the primary rationale for participants' perception of error. CONCLUSION: Nurses working in the intensive care unit readily perceive and are willing to report errors or near misses; however they may choose informal or formal methods to report.