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Background: Improving equity and early access to palliative care for underserved populations in Canada is a priority. Little is known regarding access to palliative and end-of-life care in the Black population. Methods: We undertook a scoping review using the framework by Arksey and O'Malley to identify knowledge, access gaps, and experiences of palliative and end-of-life care among Blacks living with life-limiting illnesses in Canada. Primary studies, discussion papers, books, and reports were considered eligible. We followed a comprehensive search strategy developed by an information scientist. Searches were performed in the following bibliographic databases: Medline, EMBASE, PsycINFO via OVID, CINAHL via EBSCOhost, Scopus and Cochrane Library via Wiley. The search strategy was derived from three main concepts: (1) Black people; (2) Canada and Canadian provinces; (3) Palliative, hospice, or end-of-life care. No publication date or language limits were applied. Titles and abstracts were screened for eligibility by one reviewer and full text by two independent reviewers. Results: The search yielded 233 articles. Nineteen articles were selected for full-text review, and 7 articles met the inclusion criteria. These studies were published between 2010 and 2021, and conducted in the provinces of Ontario and Nova Scotia only. Studies used both quantitative and qualitative methods and included cancer decedents, next of kin, family caregivers and religious leaders. Sample sizes in various studies ranged from 6 − 2,606 participants. Included studies reported a general lack of understanding about palliative and end-of-life care, positive and negative experiences, and limited access to palliative and end-of-life care for Blacks, across all care settings. Conclusion: Findings suggest limited knowledge of palliative care and inequities in access to palliative and end-of-life care for Blacks living with life-limiting illnesses in 2 Canadian provinces. There is an urgent need for research to inform tailored and culturally acceptable strategies to improve understanding and access to palliative care and end-of-life care among Blacks in Canada. [ABSTRACT FROM AUTHOR]

Background: Specialist-level palliative care support is intended for patients with complex physical and psychosocial needs. In addition to direct clinical care, specialist teams can be utilized to support the delivery of community-based palliative care by providing 24/7 access to advice and support for primary care providers, patients, and their families. Aim: This paper describes how a specialist palliative care team, based in a tertiary level hospital, can provide timely access to palliative care for patients in a surrounding sub-region that has historically lacked a robust network of community-based palliative care supports. Design: A retrospective database analysis was conducted from January 1 -- December 31, 2019, to describe the demographic and clinical characteristics of patients referred to the Palliative Care Consult Team who reside in the sub-region of Scarborough, Ontario. Data were reviewed to highlight the role the team plays in supporting endof- life care for this community of patients, families, and providers. Patients referred to the Palliative Care Consult Team with a residential address within the sub-region of interest were the focus. Results: In total, 343 patients living in the selected sub-region were seen by the Palliative Care Consult Team during a 12-month period, representing 18% of the team's annual clinical volume. The majority of these patients (94%) had a cancer diagnosis. Median Palliative Performance Scale score at time of initial consult was 40 for inpatients and 60 for ambulatory patients. More than half the patients 56%) were "full code" at the time of initial palliative care consultation. Median survival from initial consult to death was 18 days for inpatients and 68 days for ambulatory patients. More than half of the patients (54%) died in a palliative care unit, with a smaller percentage dying in the home setting (7%). Conclusions: Our report highlights the utilization of a database as a quality improvement tool to illustrate our institution's palliative care mission and vision of engaging in the provision of palliative care expertise to community-based patients and healthcare colleagues. [ABSTRACT FROM AUTHOR]

Background: Returning home from the hospital for palliative‐focused care is a common transition, but the process can be emotionally distressing and logistically challenging for patients and caregivers. While interventions exist to aid in the transition, none have been developed in partnership with patients and caregivers. Objective: To undergo the initial stages of codesign to create an intervention (Advancing the Care Experience for patients receiving Palliative care as they Transition from hospital to Home [ACEPATH]) to improve the experience of hospital‐to‐home transitions for adult patients receiving palliative care and their caregiver(s). Methods: The codesign process consisted of (1) the development of codesign workshop (CDW) materials to communicate key findings from prior research to CDW participants; (2) CDWs with patients, caregivers and healthcare providers (HCPs); and (3) low‐fidelity prototype testing to review CDW outputs and develop low‐fidelity prototypes of interventions. HCPs provided feedback on the viability of low‐fidelity prototypes. Results: Three patients, seven caregivers and five HCPs participated in eight CDWs from July 2022 to March 2023. CDWs resulted in four intervention prototypes: a checklist, quick reference sheets, a patient/caregiver workbook and a transition navigator role. Outputs from CDWs included descriptions of interventions and measures of success. In April 2023, the four prototypes were presented in four low‐fidelity prototype sessions to 20 HCPs. Participants in the low‐fidelity prototype sessions provided feedback on what the interventions could look like, what problems the interventions were trying to solve and concerns about the interventions. Conclusion: Insights gained from this codesign work will inform high‐fidelity prototype testing and the eventual implementation and evaluation of an ACEPATH intervention that aims to improve hospital‐to‐home transitions for patients receiving a palliative approach to care. Patient or Public Contribution: Patients and caregivers with lived experience attended CDWs aimed at designing an intervention to improve the transition from hospital to home. Their direct involvement aligns the intervention with patients' and caregivers' needs when transitioning from hospital to home. Furthermore, four patient/caregiver advisors were engaged throughout the project (from grant writing through to manuscript writing) to ensure all stages were patient‐ and caregiver‐centred. [ABSTRACT FROM AUTHOR]

Background At the end of life, individuals may experience physical symptoms such as pain, and guidelines recommend medications to manage these symptoms. Yet, little is known about the symptom management long-term care (LTC) residents receive at the end of life. Our research team developed a metric--whether residents receive one or more prescriptions for an end-of-life symptom management medication in their last two weeks--to explore end-of-life care for LTC residents. This qualitative study aimed to inform the refinement of the end-of-life prescribing metric, including the acceptability and applicability to assess the quality of a resident's symptom management at end-of-life. Methods We conducted 14 semi-structured interviews with Ontario health-care providers (physicians and nurses) who work in LTC homes and family caregivers of residents who died in LTC. Interviews were conducted virtually between February 2021 and December 2022, and were analyzed using thematic analysis. Results We identified three major themes relating to perceptions of the metric: 1) appropriateness, 2) health-care provider applicability, and 3) caregiver applicability. Participants noted that the metric may be appropriate to assess end-of-life care, but noted important nuances. Regarding applicability, health-care providers found value in the metric and that it could inform their practice. Conversely, caregivers found limited value in the metric. Conclusion The proposed metric captures a very specific aspect of end-of- life care--whether end-of-life medications were prescribed or not. Participants deemed that the metric may reflect whether LTC homes have processes to manage a resident's end-of-life symptoms with medication. However, participants thought the metric could not provide a complete picture of end-of-life care and its quality. [ABSTRACT FROM AUTHOR]

Indices of aggressive or supportive end-of-life (EOL) care are used to evaluate health services quality. Disparities according to sex were previously described, with studies showing that male sex is associated with aggressive EOL care. This is a secondary analysis of 69,983 patients who died of a GI malignancy in Ontario between 2006 and 2018. Quality indices from the last 14–30 days of life and aggregate measures for aggressive and supportive EOL care were derived from administrative data. Hospitalizations, emergency department use, intensive care unit admissions, and receipt of chemotherapy were considered indices of aggressive care, while physician house call and palliative home care were considered indices of supportive care. Overall, a smaller proportion of females experienced aggressive care at EOL (14.3% vs. 19.0%, standardized difference = 0.13, where ≥0.1 is a meaningful difference). Over time, rates of aggressive care were stable, while rates of supportive care increased for both sexes. Logistic regression showed that younger females (ages 18–39) had increased odds of experiencing aggressive EOL care (OR 1.71, 95% CI 1.30–2.25), but there was no such association for males. Quality of EOL care varies according to sex, with a smaller proportion of females experiencing aggressive EOL care. [ABSTRACT FROM AUTHOR]

In Ontario, Canada, several training programs have been created to improve home-based palliative care in First Nations communities, though they primarily focus on meeting needs at end-of-life. Therefore, education focused on incorporating an early palliative care approach for community health-related workers is necessary. To address this gap, we tested the CAPACITI curriculum with 12 health care providers working in First Nations communities across Ontario, 11 of whom were members of a First Nations community, and engaged them in a collaborative process to codesign an education program that they felt was representative of First Nations values and culture. The co-designers were trained as nurses (n = 8), personal support workers (n = 2), a social worker (n = 1), and a physician (n = 1). We met with them for 12 weekly one-hour sessions. They completed a workbook of questions and recommendations to tailor the education program to a First Nations community context. We incorporated these recommendations into the new education program by reviewing existing material, making notes of suggested changes, and adding new content. We redesigned the education program according to several themes: incorporating culture, recognizing First Nations health care workers and knowledge, and approaching education wholistically. The resulting program, Supporting the Journey Home: Growing the Community Bundle to Care for Those with Serious Illness, gives First Nations health care providers practical resources to operationalize an early palliative care approach with community members. To our knowledge, this is the first study to describe the process of redesigning an existing program to create a co-designed palliative care education program with First Nations health care providers. [ABSTRACT FROM AUTHOR]

Background: This paper focuses on the sustainability of existing palliative care teams that provide home-based care in a shared care model. For the purposes of this study, following Evashwick and Ory (2003), sustainability is understood and approached as the ability to continue the program over time. Understanding factors that influence the sustainability of teams and ways to mitigate these factors is paramount to improving the longevity and quality of service delivery models of this kind. Methods: Using qualitative data collected in interviews, the aim of this study is twofold: (1) to explore the factors that affect the sustainability of the teams at three different scales, and; (2) based on the results of this study, to propose a set of recommendations that will contribute to the sustainability of PC teams. Results: Sustainability was conceptualized from two angles: internal and external. An overview of external sustainability was provided and the merging of data from all participant groups showed that the sustainability of teams was largely dependent on actors and organizations at the local (community), regional (Local Health Integration Network or LHIN) and provincial scales. The three scales are not self-contained or singular entities but rather are connected. Integration and collaboration within and between scales is necessary, as community capacity will inevitably reach its threshold without support of the province, which provides funding to the LHIN. While the community continues to advocate for the teams, in the long-term, they will need additional supports from the LHIN and province. The province has the authority and capacity to engrain its support for teams through a formal strategy. The recommendations are presented based on scale to better illustrate how actors and organizations could move forward. Conclusions: This study may inform program and policy specific to strategic ways to improve the provision of team-based palliative home care using a shared care model, while simultaneously providing direction for team-based program delivery and sustainability for other jurisdictions. [ABSTRACT FROM AUTHOR]

This paper reports on the transformation that has occurred in the care of people living with HIV/AIDS in a Toronto Hospice. Casey House opened in the pre-HAART era to care exclusively for people with HIV/AIDS, an incurable disease. At the time, all patients were admitted for palliative care and all deaths were due to AIDS-defining conditions. AIDS-defining malignancies accounted for 22 percent of deaths, mainly, Kaposi sarcoma and lymphoma. In the post-HAART era, AIDS-defining malignancies dropped dramatically and non-AIDS-defining malignancies became a significant cause of death, including liver cancer, lung cancer and gastric cancers. In the post-HAART era, people living with HIV/AIDS served at Casey House have changed considerably, with increasing numbers of patients facing homelessness and mental health issues, including substance use. Casey House offers a picture of the evolving epidemic and provides insight into changes and improvements made in the care of these patients. [ABSTRACT FROM AUTHOR]

Over the past 4 years, the Hospice Palliative Care Network Project, co-led by the Temmy Latner Centre for Palliative Care, Mount Sinai Hospital, and the Toronto Community Care Access Centre, has been working toward developing an innovative model of home palliative care coordination and service delivery. After a successful completion of stage one involving data collection of approximately 400 variables to a common Linux database repository, the current stage of the Project is to compare various modes of care delivery and disseminate the results to internal and external evaluation stakeholders. The Temmy Latner Centre's customized Panacea Information Management System (PIMS) had been linked to the Linux repository in order to customize reports to determine the optimal model of coordination and service delivery that could serve as a template for home palliative care delivery in Ontario. The objective of this paper is to outline the development and functionality of the PIMS and to evaluate its contribution in terms of improved data quality and health outcomes; in other words, to justify the information systems investment by demonstrating the relationship between this investment and improved health system delivery and effectiveness. [ABSTRACT FROM AUTHOR]

Background: Most individuals who typically receive palliative care (PC) tend to have cancer and a relatively short prognosis (< 6 months). People with other life-limiting illnesses can also benefit from a palliative care approach. However, little is known about those who receive palliative home care in Ontario, Canada's largest province. To address this gap, the goal of this project was to understand the needs, symptoms and potential differences between those with a shorter (< 6 months) and longer prognosis (6+ months) for individuals receiving PC in the community. Methods: A cross-sectional analysis was conducted using interRAI Palliative Care (interRAI PC) assessment data collected between 2011 and 2018. Individuals with a shorter prognosis (< 6 months; n = 48,019 or 64.1%) were compared to those with a longer prognosis (6+ months; n = 26,945) across several clinical symptoms. The standardized difference (stdiff), between proportions, was calculated to identify statistically meaningful differences between those with a shorter and longer prognosis. Values of the stdiff of 0.2 or higher (absolute value) indicated a statistically significant difference. Results: Overall, cancer was the most prevalent diagnosis (83.2%). Those with a shorter prognosis were significantly more likely to experience fatigue (75.3% vs. 59.5%; stdiff = 0.34) and shortness of breath at rest (22.1% vs. 13.4%; stdiff = 0.23). However, the two groups were similar in terms of severe pain (73.5% vs. 66.5%; stdiff = − 0.15), depressive symptoms (13.2% vs. 10.7%; stdiff = 0.08) and nausea (35.7% vs. 29.4%; stdiff = 0.13). Conclusions: These results highlight the importance of earlier identification of individuals who could benefit from a palliative approach to their care as individuals with a longer prognosis also experience high rates of symptoms such as pain and nausea. Providing PC earlier in the illness trajectory has the potential to improve an individual's overall quality of life throughout the duration of their illness. [ABSTRACT FROM AUTHOR]

Background: Options available to Canadians at the end of life increased with the legalization of medical assistance in dying (MAiD). Bill C-14 modified the Canadian Criminal Code allowing individuals who meet very specific criteria to receive a medical intervention to hasten their death. June 2019 marked 3 years since the legislation has changed and while met with favour from most Canadians who believe it will provide enhanced options for quality of life at the end of life, there remains much debate over both its moral implications and practical components. Little is known regarding the Canadian healthcare provider experience with MAiD, in particular in rural and remote parts of the country such as northwestern Ontario. Objectives: The purpose of this study was to explore physicians' experiences in Northwestern Ontario with MAiD. The geographic location of this study is of particular significance as physicians in rural and remote parts of Canada face unique challenges in the provision of high-quality palliative and end-of-life services. This qualitative research focused on developing a better understanding of physicians' perceptions and practices with MAiD, in particular regarding access, decision-making, provision of service and role clarity. Methods: The researchers employed an exploratory qualitative research approach, using 1 semi-structured focus group and 18 semi-structured interviews comprising 9 set of questions. Data were collected through audio-taped semi-structured interviews, in person and by telephone. Findings: Four distinct but interconnected themes emerged from thematic analysis of the transcripts of the focus group and interviews: physician perception of patient awareness, appreciation and understanding of MAiD; challenges providing true choice at end of life; burgeoning relationships between palliative care and MAiD; and physician recommendations. Conclusion: The results of this study provide a snapshot of the Northwestern physician experiences with MAiD and contribute to the growing body of work exploring these issues on a national scale. MAiD is highlighted as both a rewarding and challenging experience for physicians in Northwestern Ontario in this study. [ABSTRACT FROM AUTHOR]

Background: Pain is a prevalent symptom at the end of life and negatively impacts quality of life. Despite this, little population level data exist that describe pain frequency and associated factors at the end of life. The purpose of this study was to explore the prevalence of clinically significant pain at the end of life and identify predictors of increased pain. Methods: Retrospective population-level cohort study of all decedents in Ontario, Canada, from April 1, 2011 to March 31, 2015 who received a home care assessment in the last 30 days of life (n = 20,349). Severe daily pain in the last 30 days of life using linked Ontario health administrative databases. Severe pain is defined using a validated pain scale combining pain frequency and intensity: daily pain of severe intensity. Results: Severe daily pain was reported in 17.2% of 20,349 decedents. Increased risk of severe daily pain was observed in decedents who were female, younger and functionally impaired. Those who were cognitively impaired had a lower risk of reporting pain. Disease trajectory impacted pain; those who died of a terminal illness (i.e. cancer) were more likely to experience pain than those with frailty (odds ratio 1.66). Conclusion: Pain is a common fear of those contemplating end of life, but severe pain is reported in less than 1 in 5 of our population in the last month of life. Certain subpopulations may be more likely to report severe pain at the end of life and may benefit from earlier palliative care referral and intervention. [ABSTRACT FROM AUTHOR]

Background: In Canada, access to palliative care is a growing concern, particularly in rural communities. These communities have constrained health care services and accessing local palliative care can be challenging. The Site Suitability Model (SSM) was developed to identify rural "candidate" communities with need for palliative care services and existing health service capacity that could be enhanced to support a secondary palliative care hub. The purpose of this study was to test the feasibility of implementing the SSM in Ontario by generating a ranked summary of rural "candidate" communities as potential secondary palliative care hubs.Methods: Using Census data combined with community-level data, the SSM was applied to assess the suitability of 12 communities as rural secondary palliative care hubs. Scores from 0 to 1 were generated for four equally-weighted components: (1) population as the total population living within a 1-h drive of a candidate community; (2) isolation as travel time from that community to the nearest community with palliative care services; (3) vulnerability as community need based on a palliative care index score; and (4) community readiness as five dimensions of fit between a candidate community and a secondary palliative care hub. Component scores were summed for the SSM score and adjusted to range from 0 to 1.Results: Population scores for the 12 communities ranged widely (0.19-1.00), as did isolation scores (0.16-0.94). Vulnerability scores ranged more narrowly (0.27-0.35), while community readiness scores ranged from 0.4-1.0. These component scores revealed information about each community's particular strengths and weaknesses. Final SSM scores ranged from a low of 0.33 to a high of 0.76.Conclusions: The SSM was readily implemented in Ontario. Final scores generated a ranked list based on the relative suitability of candidate communities to become secondary palliative care hubs. This list provides information for policy makers to make allocation decisions regarding rural palliative services. The calculation of each community's scores also generates information for local policy makers about how best to provide these services within their communities. The multi-factorial structure of the model enables decision makers to adapt the relative weights of its components. [ABSTRACT FROM AUTHOR]

Introduction: Ontario delisted high-strength fentanyl, hydromorphone and morphine from the public drug formulary for non-palliative care prescribers on 31 January, 2017. Our aim is to assess the early impact of this policy on prescribing patterns and to examine whether this impact varied by prescriber type, opioid type and opioid strength. Methods: We conducted a population-based, cross-sectional study on palliative and non-palliative care patients dispensed fentanyl, hydromorphone or morphine through the Ontario public drug program between 1 January, 2014, and 31 July, 2017. For each month during the study period, we reported the total number of high-strength opioid recipients stratified by prescriber type, and the total volume of each drug dispensed, stratified by strength. We used interventional autoregressive integrated moving average (ARIMA) models to assess the policy's impact on prescribing patterns. Results: We observed a 98% decrease in the total number of publicly funded recipients of high-strength opioids between December 2016 and July 2017 (5930 to 133 recipients) for all prescribers. The policy led to a significant decline in the total volume of all three opioids dispensed: hydromorphone from 20 374 621 to 16 952 097 mg (p < .01); morphine from 40 644 190 to 33 555 480 mg (p < .03); and fentanyl from 9 604 913 to 5 842 405 mcg/h (p < .01). For both fentanyl and hydromorphone, this reduction generally corresponded to an increase in the number of low-strength opioids dispensed. Conclusion: Delisting high-strength opioids substantially reduced the number of highstrength opioid recipients and reduced the overall volume of long-acting opioids dispensed in Ontario through the public drug program. Future studies should examine its impact on patient outcomes. [ABSTRACT FROM AUTHOR]

Background: Delirium is a very common and distressing neuropsychiatric syndrome in palliative care. Increasing age, the presence of dementia and advanced cancer are well-known predisposing risk factors for delirium development. Sleep-wake cycle disturbance is frequently seen during delirium and melatonin has a pivotal role in the regulation of circadian rhythms. Current evidence across various settings suggests a potential preventative role for melatonin in patients at risk of delirium, but no studies are currently reported in patients with advanced cancer. The aim of this article is to describe the design of a feasibility study that is being conducted to inform a larger randomized, placebo-controlled, double-blind trial (RCT) to evaluate the role of exogenously administered melatonin in preventing delirium in patients with advanced cancer.Methods/design: Adult patients with a cancer diagnosis who are admitted to the palliative care unit will be randomized into a treatment or placebo group. The pharmacological intervention consists of a single daily dose of immediate-release melatonin (3 mg) at 21:00 ± 1 h, from day 1 to day 28 of admission. The primary objective of this initial study is to assess the feasibility of conducting the proposed RCT by testing recruitment and retention rates, appropriateness of study outcome measures, acceptability of study procedures and effectiveness of the blinding process. The primary outcome measure of the proposed larger RCT is time to first inpatient incident episode of delirium. We also plan to collect data on incident rates of delirium and patient-days of delirium, adjusting for length of admission.Discussion: The outcomes of this feasibility study will provide information on recruitment and retention rates, protocol violation frequency, effectiveness of the blinding process, acceptability of the study procedures, and safety of the proposed intervention. This will inform the design of a fully powered randomized controlled trial to evaluate the preventative role of melatonin administration in patients with advanced cancer.Trial Registration: Registered with ClinicalTrials.gov: NCT02200172 Registered on 21 July 2014. Health Canada protocol number: BRI-MELAT-2013 (Final approved protocol version (Version 3): 18 June 2014) (Notice of Amended Authorization (NOA) received 14 November 2014). [ABSTRACT FROM AUTHOR]

Background: In the pursuit to provide the highest quality of person centered palliative care, client preferences, needs, and wishes surrounding end of life should be used to inform the plan of care. During a clinical assessment for care services, clients may voluntarily express a ‘wish to die’ either directly to the clinician or it may be indirectly reported second-hand to the clinician through an informal caregiver or family member. This is the first study using data gathered from the interRAI Palliative Care Assessment instrument (interRAI PC) to examine socio-demographic, clinical, and psycho-social factors of palliative home care clients with the voluntary expression of a ‘wish to die now'. Factors associated with the risk for depression within this group were also identified. Awareness and understanding of clients who express the ‘wish to die’ is needed to better tailor a person-centered approach to end-of-life care. Methods: This cross-sectional study included assessment records gathered from 4,840 palliative home care clients collected as part of pilot implementation of the interRAI PC assessment instrument in Ontario, Canada from 2006 through 2011. Results: During the clinical assessment, 308 palliative home care clients (6.7 %) had voluntarily expressed a ‘wish to die now'. Independent factors emerging from multivariate logistic regression analyses predicting the expression of a ‘wish to die’ included not being married/widowed, a shorter estimated prognosis, depressive symptoms, functional impairment, too much sleep (excessive amount), feeling completion regarding financial/legal matters, and struggling with the meaning of life. Among persons who expressed a ‘wish to die now', those who exhibited depressive symptoms (23.8 %, n = 64) were also more likely to exhibit cognitive impairment, have decline in cognition in the last 90 days, exhibit weight loss, have informal caregivers exhibiting distress, ‘not have a consistent positive outlook on life’ and report ‘struggling with the meaning of life’. Conclusion: When clients voluntary express a wish to die clinicians should take notice and initiate follow-up to better understand the context of this meaning for the individual. Clients who expressed a ‘wish to die’ did not all experience pain, depression, and psychological distress suggesting an individualized approach to care management be taken. [ABSTRACT FROM AUTHOR]

Introduction The interRAI Palliative Care (interRAI PC) assessment instrument provides a standardized, comprehensive means to identify person-specific need and supports clinicians to address important factors such as aspects of function, health, and social support. The interRAI Clinical Assessment Protocols (CAPs) inform clinicians of priority issues requiring further investigation where specific intervention may be warranted and equip clinicians with evidence to better inform development of a person-specific plan of care. This is the first study to describe the interRAI PC CAP development process and provide an overview of distributional properties of the eight interRAI PC CAPs among community dwelling adults receiving palliative home care services. Methods Secondary data analysis used interRAI PC assessments (N = 6,769) collected as part of regular clinical practice at baseline (N = 6,769) and follow-up (N = 1,000). Clients across six regional jurisdictions in Ontario, Canada, assessed to receive palliative homecare services between 2006 and 2011 were included (mean age 70.0 years; ±13.4 years). Descriptive analyses focused on the eight interRAI PC CAPs: Fatigue, Sleep Disturbance, Nutrition, Pressure Ulcers, Pain, Dyspnea, Mood Disturbance and Delirium. Results The majority of clients triggered at least one CAP while two thirds triggered two or more. Triggering rates ranged from 74% for the Fatigue CAP to less than 15% for the Delirium and Pressure Ulcers CAPs. The hierarchical CAP triggering structure suggested Fatigue and Dyspnea CAPs were persistent issues prevalent among the majority of clients while Delirium and Pressure Ulcers CAPs rarely trigger in isolation and most often trigger later in the illness trajectory. Conclusion When any of the eight interRAI PC CAPs are triggered, clinicians should take notice. CAPs triggered at high rates such as fatigue, dyspnea, and pain warrant increased attention for the majority of clients. Consideration of triggered CAPs provide evidence to inform a collaborative decision making process on whether or not issues raised by the CAPs should be addressed in the plan of care. Integrating evidence from the interRAI PC CAPs into the clinical decision making process support care planning to address client strengths, preferences and needs with greater acuity. [ABSTRACT FROM AUTHOR]

Background: The Richmond Agitation-Sedation Scale (RASS), which assesses level of sedation and agitation, is a simple observational instrument which was developed and validated for the intensive care setting. Although used and recommended in palliative care settings, further validation is required in this patient population. The aim of this study was to explore the validity and feasibility of a version of the RASS modified for palliative care populations (RASS-PAL). Methods: A prospective study, using a mixed methods approach, was conducted. Thirteen health care professionals (physicians and nurses) working in an acute palliative care unit assessed ten consecutive patients with an agitated delirium or receiving palliative sedation. Patients were assessed at five designated time points using the RASS-PAL. Health care professionals completed a short survey and data from semi-structured interviews was analyzed using thematic analysis. Results: The inter-rater intraclass correlation coefficient range of the RASS-PAL was 0.84 to 0.98 for the five time points. Professionals agreed that the tool was useful for assessing sedation and was easy to use. Its role in monitoring delirium however was deemed problematic. Professionals felt that it may assist interprofessional communication. The need for formal education on why and how to use the instrument was highlighted. Conclusion: This study provides preliminary validity evidence for the use of the RASS-PAL by physicians and nurses working in a palliative care unit, specifically for assessing sedation and agitation levels in the management of palliative sedation. Further validity evidence should be sought, particularly in the context of assessing delirium. [ABSTRACT FROM AUTHOR]

Background: Patients often view "palliative care" (PC) as an approach that is synonymous with end-of-life and death, leading to shock and fear. Differing cultural and social norms and religious affiliations greatly determine perception of PC among diverse populations. Methods: This prospective observational study aimed to explore perceptions of PC among South Asian community members at one Canadian site. Patients who identified themselves as being of South Asian origin were consented and enrolled at a PC Clinic at a community hospital in Brampton, Ontario serving a large South Asian population. Participants filled out an 18-question survey created for the study and responded to a semi-structured interview consisting of 8 questions that further probed their perceptions of PC. Survey responses and semi-structured interviews content were analyzed by four authors who reached consensus on key exploratory findings. Results: Thirty-four participants of South Asian origin were recruited (61.8% males), and they were distributed by their age group as follows: [(30–49) - 18%; (50–64) – 21%; (65–79) - 41%; (≥ 80) – 21%]. Five main exploratory findings emerged: (i) differing attitudes towards talking about death; (ii) the key role of family in providing care; (iii) a significant lack of prior knowledge of PC; (iv) a common emphasis on the importance of alleviating suffering and pain to maintain comfort; and (v) that cultural values, faith, or spiritual belief do not pose a necessary challenge to acceptance of PC services. Conclusions: Observations from this study provide a source of reference to understand the key findings and variability in perceptions of palliative care in South Asian communities. Culturally competent interventions based on trends observed in this study could assist Palliative Physicians in delivering personalized care to South Asian populations. [ABSTRACT FROM AUTHOR]

Background: Currently, there are no formalized measures for the quality of home based palliative care in Ontario. This study developed a set of potential quality indicators for seriously ill home care clients using a standardized assessment. Methods: Secondary analysis of Resident Assessment Instrument for Home Care data for Ontario completed between 2006 and 2013 was used to develop quality indicators (QIs) thought to be relevant to the needs of older (65+) seriously ill clients. QIs were developed through a review of the literature and consultation with subject matter experts in palliative care. Serious illness was defined as a prognosis of less than 6 months to live or the presence of severe health instability. The rates of the QIs were stratified across Ontario's geographic regions, and across four common life-limiting illnesses to observe variation. Results: Within the sample, 14,312 clients were considered to be seriously ill and were more likely to experience negative health outcomes such as cognitive performance (OR = 2.77; 95% CI: 2.66–2.89) and pain (OR = 1.59; 95% CI: 1.53–1.64). Twenty subject matter experts were consulted and a list of seven QIs was developed. Indicators with the highest overall rates were prevalence of falls (50%) prevalence of daily pain (47%), and prevalence of caregiver distress (42%). The range in QI rates was largest across regions for prevalence of caregiver distress (21.5%), the prevalence of falls (16.6%), and the prevalence of social isolation (13.7%). Those with some form of dementia were most likely to have a caregiver that was distressed (52.6%) or to experience a fall (53.3%). Conclusion: Home care clients in Ontario who are seriously ill are experiencing high rates of negative health outcomes, many of which are amenable to change. The RAI-HC can be a useful tool in identifying these clients in order to better understand their needs and abilities. These results contribute significantly to the process of creating and validating a standardized set of QIs that can be generated by organizations using the RAI-HC as part of normal clinical practice. [ABSTRACT FROM AUTHOR]