Palliative care in small-scale living facilities: a scoping review.

BACKGROUND: Innovative small-scale facilities for dementia focus on providing quality of life and maintaining the functional abilities of residents while offering residents a home for life. To fulfill the home-for-life principle, palliative care approaches are necessary to maintain quality of life in these facilities. Few studies have reported on how palliative care is provided to residents in small-scale facilities. The aim of our review is to determine the extent to which palliative care approaches are reported in small-scale facilities. METHODS: A scoping review of the literature using recommended methods from the Joanna Briggs Institute. Four databases, CINAHL, PubMed, PsycINFO, and Web of Science, were searched for studies published from 1995 to 2023. One reviewer completed the title, abstract and full-text screening and data extraction; two additional team members piloted the screening and extraction process and met with the main reviewer to make decisions about article inclusion and ensure consistency and accuracy in the review process. The extracted data was open-coded and analyzed using thematic analysis. The data was then synthesized into themes using palliative care domains for dementia. RESULTS: Of the 800 articles obtained in the search, only ten met the inclusion criteria: six from Japan, two from the Netherlands, and one each from Austria and the United States. In most small-scale facilities, palliative care is important, with facilities prioritizing family involvement and person-centred care, minimizing resident discomfort and enhancing residents' remaining abilities until the end of life. The included studies did not discuss palliative care policies or professional staff training in depth. CONCLUSIONS: This study provides an overview of the literature on palliative care in small-scale facilities for individuals with dementia. Most facilities focus on residents' wishes at the end of life to enhance comfort and provide a home-like environment. However, more research is needed to further understand the quality of palliative care approaches in these homes.

Who Doesn't Come Home? Factors Influencing Mortality Among Long-Term Care Residents Transitioning to and From Emergency Departments in Two Canadian Cities.

Residents of long-term care (LTC) whose deaths are imminent are likely to trigger a transfer to the emergency department (ED), which may not be appropriate. Using data from an observational study, we employed structural equation modeling to examine relationships among organizational and resident variables and death during transitions between LTC and ED. We identified 524 residents involved in 637 transfers from 38 LTC facilities and 2 EDs. Our model fit the data, (χ2 = 72.91, df = 56, p = .064), explaining 15% variance in resident death. Sustained shortness of breath (SOB), persistent decreased level of consciousness (LOC) and high triage acuity at ED presentation were direct and significant predictors of death. The estimated model can be used as a framework for future research. Standardized reporting of SOB and changes in LOC, scoring of resident acuity in LTC and timely palliative care consultation for families in the ED, when they are present, warrant further investigation.

Inappropriateness of health care in Canada: a systematic review protocol.

BACKGROUND: There is increasing recognition in Canada and globally that a substantial proportion of health care delivered is inappropriate as evidenced by (1) harmful and/or ineffective practices being overused, (2) effective clinical practices being underused, and (3) other clinical practices being misused. Inappropriate health care leads to negative patient experiences, poor health outcomes, and inefficient use of scarce health care resources. The purpose of this study is to conduct a systematic review of inappropriate health care in Canada. Our specific objectives are to (1) systematically search and critically review published and grey literature for studies on inappropriate health care in Canada; (2) estimate the nature and magnitude of inappropriate health care in Canada and its provincial and territorial jurisdictions. METHODS: We will include all quantitative study designs reporting objective or subjective measurements of inappropriate health care in Canada over the last 10 years. We will search the following online databases: MEDLINE, Cochrane Central Register of Controlled Trials, EconLit, and ISI-Web of Knowledge, which contains Web of Science Core Collection-Citation Indexes, Science Citation Index Expanded, Conference Proceedings Citation Index-Science, and Conference Proceedings Citation Index-Social Science & Humanities. We will also search grey literature sources to identify provincial and national audits of inappropriate health care. Two authors will independently screen, assess data quality, and extract data for synthesis. Study findings will be synthesized narratively. We will organize our data into three care categorizations: preventive care, acute care, and chronic care. We will provide a compendium of inappropriate health care for each care category for Canada and each Canadian province and territory, where sufficient data exists, by calculating (1) overall medians of underuse, overuse, and misuse of clinical practices and (2) the range of medians of underuse, overuse, and misuse for each clinical practice investigated. DISCUSSION: This review will result in the first-ever evidence-based compendium of inappropriate health care in Canada. We will also develop detailed reports of inappropriate health care for each Canadian province and territory. SYSTEMATIC REVIEW REGISTRATION: PROSPERO CRD42018093495.

The minimally effective dose of sucrose for procedural pain relief in neonates: a randomized controlled trial.

BACKGROUND: Orally administered sucrose is effective and safe in reducing pain intensity during single, tissue-damaging procedures in neonates, and is commonly recommended in neonatal pain guidelines. However, there is wide variability in sucrose doses examined in research, and more than a 20-fold variation across neonatal care settings. The aim of this study was to determine the minimally effective dose of 24% sucrose for reducing pain in hospitalized neonates undergoing a single skin-breaking heel lance procedure. METHODS: A total of 245 neonates from 4 Canadian tertiary neonatal intensive care units (NICUs), born between 24 and 42 weeks gestational age (GA), were prospectively randomized to receive one of three doses of 24% sucrose, plus non-nutritive sucking/pacifier, 2 min before a routine heel lance: 0.1 ml (Group 1; n = 81), 0.5 ml (Group 2; n = 81), or 1.0 ml (Group 3; n = 83). The primary outcome was pain intensity measured at 30 and 60 s following the heel lance, using the Premature Infant Pain Profile-Revised (PIPP-R). The secondary outcome was the incidence of adverse events. Analysis of covariance models, adjusting for GA and study site examined between group differences in pain intensity across intervention groups. RESULTS: There was no difference in mean pain intensity PIPP-R scores between treatment groups at 30 s (P = .97) and 60 s (P = .93); however, pain was not fully eliminated during the heel lance procedure. There were 5 reported adverse events among 5/245 (2.0%) neonates, with no significant differences in the proportion of events by sucrose dose (P = .62). All events resolved spontaneously without medical intervention. CONCLUSIONS: The minimally effective dose of 24% sucrose required to treat pain associated with a single heel lance in neonates was 0.1 ml. Further evaluation regarding the sustained effectiveness of this dose in reducing pain intensity in neonates for repeated painful procedures is warranted. TRIAL REGISTRATION: ClinicalTrials.gov : NCT02134873. Date: May 5, 2014 (retrospectively registered).

Screening for Frailty in Canada's Health Care System: A Time for Action.

As Canada's population ages, frailty - with its increased risk of functional decline, deterioration in health status, and death - will become increasingly common. The physiology of frailty reflects its multisystem, multi-organ origins. About a quarter of Canadians over age 65 are frail, increasing to over half in those older than 85. Our health care system is organized around single-organ systems, impairing our ability to effectively treat people having multiple disorders and functional limitations. To address frailty, we must recognize when it occurs, increase awareness of its significance, develop holistic models of care, and generate better evidence for its treatment. Recognizing how frailty impacts lifespan will allow for integration of care goals into treatment options. Different settings in the Canadian health care system will require different strategies and tools to assess frailty. Given the magnitude of challenges frailty poses for the health care system as currently organized, policy changes will be essential.

Impact of Symptoms and Care Practices on Nursing Home Residents at the End of Life: A Rating by Front-line Care Providers.

OBJECTIVES: Burdensome symptoms and potentially inappropriate care practices are common at the end of life for nursing home residents. Appropriately managing symptoms and limiting aggressive care practices is key to high-quality end-of-life care. Little research is available, however, on the opinions of nursing home care providers about the impact of symptoms and practices for both residents and care facilities. Our objectives were to (1) identify common burdensome symptoms and potentially inappropriate practices at the end of life for nursing home residents, (2) develop and assess the feasibility of a procedure to have various groups of nursing home care providers rate impact of symptoms and practices, and (3) generate recommendations for action and further research, with key policy and decision makers. DESIGN: Proof-of-concept study. Partnered research by researchers, health professionals, and decision makers to identify and explore the impact of burdensome symptoms and potentially inappropriate care practices for nursing home residents at the end of life. SETTING: Thirty-six nursing homes from Alberta, Manitoba, and Saskatchewan. PARTICIPANTS: A total of 6007 residents (prevalence rating); 4 medical directors, 5 directors of care, 4 nurse practitioners, 4 registered nurses, 5 licensed practical nurses, 5 care aides (impact rating); and 13 key policy or decision makers from Alberta, British Columbia, and Manitoba (expert panel). METHODS: Based on a literature search and data in the Resident Assessment Instrument-Minimum Data Set (RAI-MDS) 2.0, we generated lists of burdensome symptoms and potentially inappropriate care practices for nursing home residents at the end of life. We rated prevalence of those symptoms and practices in the last quarter before death as high, medium, or low. Care providers rated the burden of symptoms and inappropriateness of practices as high, medium, or low. Directors of care rated the unnecessary cost of those symptoms and practices to a nursing home as high, medium, or low. We ranked symptoms and practices based on those ratings. We discussed our findings in an interactive expert panel and generated recommendations for action and further research. MEASUREMENTS: RAI-MDS 2.0 (symptom prevalence rating); online survey to rate symptoms and practices (impact rating). RESULTS: The 3 most prevalent symptoms were urinary incontinence (79.7%), fecal incontinence (66.7%), and responsive behaviors (63%). The 3 most prevalent practices were polypharmacy (9+ medications; 55.2%), antipsychotic use with no diagnosis of psychosis (29.2%), and physical restraint use (18.7%). The symptoms rated as having highest overall impact were pain, responsive behaviors, and urinary incontinence. Practices rated as having the most impact were polypharmacy, hospital and emergency department transitions, and antipsychotic use with no diagnosis of psychosis. CONCLUSION: Burdensome symptoms and inappropriate care practices near the end of life for residents in nursing homes are highly prevalent. Attending to those symptoms and practices is necessary to improve the quality of dying for nursing home residents. Our study provides preliminary demonstration of the feasibility and importance of engaging the spectrum of care providers in assessing the impact of symptoms and care practices on resident experience. Experiences of this proof-of-concept study will be the basis for the development of an indicator profile to monitor and improve quality of end-of-life care in nursing homes in the future.

Information acquisition for women facing surgical treatment for breast cancer: influencing factors and selected outcomes.

OBJECTIVE: To examine, summarize, and critically assess the literature focusing on information use by early-stage breast cancer patients. METHODS: Empirical articles reporting the information needs, sources used/preferred, and intervention-related outcomes experienced by patients in the context of making a treatment choice were chosen. Several healthcare databases were searched. Articles were limited to those published in English between January 1, 1986 and March 31, 2006. RESULTS: A total of 25 articles met the inclusion criteria. Information needs were consistent, and highest rankings were for (in order): information about chances for a cure, stage of disease, and treatment options. Results were equivocal regarding the factors found to influence information need: age, time since diagnosis, and preferred role in decision-making. The highest ranked information sources accessed and preferred were physicians. Age, education, and type of treatment chosen influenced source choice. Patients using consumer decision aids (CDAs) had less decisional conflict, higher satisfaction with the decision made and the decision process, and higher knowledge levels. CONCLUSION: Information needs and source use were influenced by several personal and contextual factors. PRACTICE IMPLICATIONS: A better understanding of source use could provide more effective ways of disseminating information to patients.