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BACKGROUND: Moral distress is a serious problem for health care personnel. Surveys, individual interviews, and focus groups may not capture all of the effects of, and responses to, moral distress. Therefore, we used a new participatory action research approach-moral conflict assessment (MCA)-to characterize moral distress and to facilitate the development of interventions for this problem. AIM: To characterize moral distress by analyzing responses of intensive care unit (ICU) personnel who participated in the MCA process. RESEARCH DESIGN: In this qualitative study, we invited all ICU personnel at 3 urban hospitals to participate in individual or group sessions using the 8-step MCA tool. These sessions were facilitated by either a clinical ethicist or a counseling psychologist who was trained in this process. During each session, one of the researchers took notes and prepared a report for each MCA which were analyzed using qualitative content analysis. PARTICIPANTS AND RESEARCH CONTEXT: A total of 24 participants took part in 15 sessions, individually or in groups; 14 were nurses and nurse leaders, 2 were physicians, and 8 were other health professionals. ETHICAL CONSIDERATIONS: This study was approved by the Providence Health Care/University of British Columbia Behavioural Research Ethics Board. Each participant provided written informed consent. RESULTS: The main causes of moral distress related to goals of care, communication, teamwork, respect for patient's preferences, and the managerial system. Suggested solutions included communication strategies and educational activities for health care providers, patients, family members, and others about teamwork, advance directives, and end-of-life care. Participants acknowledged that using the MCA process helped them to reflect on their own thoughts and use their moral agency to turn a distressing situation into a learning and improvement opportunity. CONCLUSIONS: Using the MCA tool helped participants to characterize their moral distress in a systematic way, and to arrive at new potential solutions.

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BACKGROUND: High rates of health care utilization at the end of life may be a marker of care that does not align with patient-stated preferences. We sought to describe trends in end-of-life care and factors associated with dying in hospital. METHODS: We conducted a population-level retrospective cohort study of adult decedents in Ontario between Apr. 1, 2004, and Mar. 31, 2015, using linked administrative data sets, including the Office of the Registrar General for Deaths database, the hospital Discharge Abstract Database, the National Ambulatory Care Reporting System and physicians' billing claims (Ontario Health Insurance Plan). The primary outcome was place of death. To determine health care utilization and health care costs during the 6 months before death, we also identified admissions to hospital and to the intensive care unit, emergency department visits, and receipt of mechanical ventilation and palliative care. RESULTS: In the last 6 months of life, 77.3% of 962 462 decedents presented to an emergency department, 68.4% were admitted to hospital, 19.4% were admitted to an intensive care unit, and 13.9% received mechanical ventilation. Forty-five percent of all deaths occurred in hospital, a proportion that declined marginally over time, whereas receipt of palliative care increased during terminal hospital admissions (from 14.0% in fiscal year 2004/05 to 29.3% in 2014/15, p < 0.001) and in the last 6 months of life (from 28.1% in 2004/05 to 57.7% in 2014/15, p < 0.001). The proportion of decedents who presented to the emergency department, were admitted to hospital or were admitted to the intensive care unit in the last 6 months of life did not change over 11 years. The mean total health care costs in the last 6 months of life were highest among those dying in hospital, with most costs attributable to inpatient medical care. INTERPRETATION: Health care utilization in the last 6 months of life was substantial and did not decrease over time. It is possible that increased capacity for palliative, hospice and home care at the end of life may help to better align health system resources with the preferences of most patients, a topic that should be explored in future studies.

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Urban centers are increasingly ethnically diverse. However, some visible minorities are less likely than their majority counterparts to seek and receive services and treatment for dementia. This study explored experiences of South Asian Canadians, Canada's largest visible minority group, prior to dementia diagnosis. Six persons with dementia and eight of their family carers described their early perceptions of dementia-related changes, actions taken, including help seeking and diagnosis, and affective responses. Early signs were attributed to aging or personality. Even after cognitive enhancers were prescribed, some respondents continued to believe that the dementia symptoms were 'normal'. Family carers' affective responses may be related to their attributions. Before seeking medical attention, family carers modified physical or social environments because of symptoms. Help seeking was delayed up to four years, even with significant dementia symptoms. Recognition of a health problem was influenced by safety concerns, emergence of new symptoms following trauma, and treatment for other health problems. For some, relatives living outside the home or outside Canada were instrumental in recognizing a problem and convincing family carers and persons with dementia to seek medical attention. The pathway to diagnosis might be easier with outreach to help South Asian immigrants differentiate between normal aging and dementia. Symptom recognition by physicians treating other acute conditions was a portal to dementia services for others. Screening and referral in acute care could result in earlier diagnosis and treatment.

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Risk is a multifaceted and complex concept that mediates quality of life through the balance between risk taking and risk avoidance. Society expects older adults to identify and manage their personal risks yet little is known about the meaning of risk in their daily lives and how they balance the tensions between taking and avoiding risks. Therefore the purpose of this study was to explore how older adults construe risk. A qualitative exploratory study that incorporated photovoice methodology was used. Seventeen older adults, over a weeklong period, took pictures and kept a log of the places, spaces, events, activities, or situations that best represented risk. Subsequently, they participated in a follow-up individual interview. Older adults viewed risk both positively and negatively, judging the saliency of a risk according to criteria that related both to the risk itself and to personal characteristics. Although risk was avoided in specific situations, risk taking was participants' primary approach to risk, which assumed three forms: adaptive, opportunistic, and/or unjustifiable. Contrary to societal views, older adults view risk as constructive and personally relevant, and as something to be taken and need to be supported in risk taking rather than risk avoidance.

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BACKGROUND: Disruptive behaviors are frequent and often the first predictor of institutionalization. The goal of this multi-center study was to explore the perceptions of family and staff members on the potential contribution of environmental factors that influence disruptive behaviors and quality of life of residents with dementia living in long-term care homes. METHODS: Data were collected using 15 nominal focus groups with 45 family and 59 staff members from eight care units. Groups discussed and created lists of factors that could either reduce disruptive behaviors and facilitate quality of life or encourage disruptive behaviors and impede the quality of life of residents. Then each participant individually selected the nine most important facilitators and obstacles. Themes were identified from the lists of data and operational categories and definitions were developed for independent coding by four researchers. RESULTS: Participants from both family and staff nominal focus groups highlighted facility, staffing, and resident factors to consider when creating optimal environments. Human environments were perceived to be more important than physical environments and flexibility was judged to be essential. Noise was identified as one of the most important factors influencing behavior and quality of life of residents. CONCLUSION: Specialized physical design features can be useful for maintaining quality of life and reducing disruptive behaviors, but they are not sufficient. Although they can ease some of the anxieties and set the stage for social interactions, individuals who make up the human environment are just as important in promoting well-being among residents.

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BACKGROUND: Oral health care for frail elders is grossly inadequate almost everywhere, and our knowledge of regulating and financing oral care in this context is unclear. OBJECTIVE: This scoping study examined and summarised the published literature available and the gaps in knowledge about regulating and financing oral care in long-term care (LTC) facilities. METHODS: We limited the electronic search to reports on regulating and financing oral care, including reports, commentaries, reviews and policy statements on financing and regulating oral health-related services. RESULTS: The broad electronic search identified 1168 citations, which produced 42 references, including 26 pieces of grey literature for a total of 68 papers. Specific information was found on public and private funding of care and on difficulties regulating care because of professional segregation, difficulties assessing need for care, uncertainty on appropriateness of treatments and issues around scope of professional practice. A wide range of information along with 19 implications and 18 specific gaps in knowledge emerged relevant to financing and regulating oral healthcare services in LTC facilities. CONCLUSIONS: Effort has been given to enhancing oral care for frail elders, but there is little agreement on how the care should be regulated or financed within the LTC sector.

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While complementary and alternative medicine (CAM) can improve quality of life at end of life, little research exists on hospice residents' interest in using and sharing CAM experiences with a partner/friend/other family member. A pilot study conducted in British Columbia, Canada explored the extent of hospice residents' interest and openness to CAM use. A convenience sample of 48 hospice residents from 9 hospice sites completed questionnaire-based interviews. The majority of participants were Caucasian women over 60 years old. 81 percent expressed interest in receiving CAM; 79 percent used CAM prior to entering the hospice setting. 50 percent of those interested in using CAM felt their partner/friend/other family member would also be interested in receiving CAM, and half of that 50 percent reported personal interest in sharing the experience. Reasons reported for CAM interest were to enhance well-being, relaxation, and for pain relief. Further research could explore how resident-caregiver dyads may benefit from shared CAM experiences over the illness trajectory.

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Increasing evidence suggests that early diagnosis and management of dementia-related symptoms may improve the quality of life for patients and their families. However, individuals may wait from 1-3 years from the onset of symptoms before receiving a diagnosis. The objective of this qualitative study was to explore the perceptions and experiences of problem recognition, and the process of obtaining a diagnosis among individuals with early-stage dementia and their primary carers. From 2006-2009, six Anglo-Canadians with dementia and seven of their carers were recruited from the Alzheimer's Society of Calgary to participate in semi-structured interviews. Using an inductive, thematic approach to the analysis, five major themes were identified: becoming aware of memory problems, attributing meanings to symptoms, initiating help-seeking, acknowledging the severity of cognitive changes and finally obtaining a definitive diagnosis. Individuals with dementia reported noticing memory difficulties earlier than their carers. However, initial symptoms were perceived as ambiguous, and were normalised and attributed to concurrent health problems. The diagnostic process was typically characterised by multiple visits and interactions with health professionals, and a diagnosis was obtained as more severe cognitive deficits emerged. Throughout the diagnostic pathway, carers played dynamic roles. Carers initially served as a source of encouragement to seek help, but they eventually became actively involved over concerns about alternative diagnoses and illness management. A better understanding of the pre-diagnosis period, and the complex interactions between people's beliefs and attributions about symptoms, may elucidate some of the barriers as well as strategies to promote a timelier dementia diagnosis.

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This study holistically explores the experience of dying and end-of-life care for older persons with dementia in long-term care (LTC) from the perspective of care providers. Using a focused ethnography methodology, seven researchers interviewed LTC staff, residents' families, volunteers, management staff, and spiritual advisers/clergy over a five-day period. Research was guided by two key questions: What is the dying experience of people living in LTC from the perspective of different care providers? and, What are the salient issues in providing palliative care for elderly people dying in LTC? Based on a thematic analysis of verbatim data, three common themes were identified: tension between completing job tasks on time and "being there" for residents; the importance of family-like bonds between front-line staff and residents; and the importance of communication among staff and between staff and residents and their families at the end of life. Findings are discussed in relation to their implications for policies and practices that can support whole-person care and ultimately a good death for residents of LTC facilities.

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PURPOSE: The aim of this study is to determine if more males than females are admitted to adult intensive care units (ICUs). MATERIALS AND METHODS: In 9 tertiary and community hospitals in British Columbia, Canada, we expressed the number of patients admitted to hospital and to ICU from 1998 to 2008 as a proportion of the population of the main regions served by these hospitals, and for ICU patients in 1 tertiary hospital, as a proportion of the hospital population. Patients not residing in the region of this tertiary hospital or whose addresses were unknown and admissions for sex-specific diagnoses were excluded from the main analyses. Male proportion was divided by female proportion for age groups by decade. Multivariate regression was used to determine the association between sex and admission to ICU after adjustment for confounders. RESULTS: Normalized male-to-female ratio of ICU admissions to the 9 hospitals was greater than 1. In the tertiary hospital analyzed in more detail, the male-to-female ratio for admissions to hospital or to ICU, normalized to the population in the community or hospital, respectively, was greater than 1 for all age groups, and this ratio increased with age. After adjustment for covariates, males and females less than 80 years of age were roughly equally likely to be admitted to ICU from hospital, but in patients aged 80 or older, men were much more likely than women to be admitted (odds ratio, 2.14; 95% confidence interval, 1.56-2.94). CONCLUSION: More men than women are admitted to ICUs; this difference is especially prominent in elderly patients.

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