Together, alone: Personal experiences of virtual funeral attendance during the COVID-19 global pandemic.

The COVID-19 pandemic caused profound distortions in how deaths were marked by those left to mourn their passing. Public health restrictions prohibited gatherings of friends and families for traditional funerals, causing an upsurge in reliance on virtual alternatives. The aim of this study was to explore the experiences of individuals attending virtual funerals following a death of any cause, including reasons for choosing virtual attendance, perceived differences relative to in person attendance, and the extent to which mourning practices were accommodated. Between May 2021 and June 2022, we identified 57 participants with virtual funeral attendance experience. They identified many shortcomings of virtual funerals, captured under themes including, socialization, community support, sharing food, physical contact, consoling the bereaved, sharing memories, and connection. There were features of virtual funerals that participants appreciated, summarized by themes including, accessibility, taking part or marking the event, closure, technological advantages and privacy. Despite a sense that virtual funerals provided an opportunity to grieve "together, alone," most conceded it was better than not being able to take part at all. This study provides detailed information about participating in virtual funerals, identifying features of this experience that should be examined to determine how those may influence grieving processes and bereavement outcomes.

The first casualty of COVID-19 for patients nearing death was human dignity: Understanding the experience of palliative care patients during the COVID-19 pandemic.

The COVID-19 pandemic changed the way people lived, but also the way they died. It accentuated the physical, psychological, social, and spiritual vulnerabilities of patients approaching death. This study explored the lived experience of palliative inpatients during the pandemic. We conducted interviews with 22 palliative inpatients registered in a Canadian urban palliative care program, aimed to uncover how the pandemic impacted participants' experiences of approaching end-of-life. The reflexive thematic analysis revealed 6 themes: putting off going into hospital, the influence of the pandemic on hospital experience, maintaining dignity in care, emotional impact of nearing death, making sense of end-of-life circumstances and coping with end-of-life. Findings highlight the vulnerability of patients approaching death, and how that was accentuated during the pandemic. Findings reveal how the pandemic strained, threatened, and undermined human connectedness. These lived experiences of palliative inpatients offer guidance for future pandemic planning and strategies for providing optimal palliative care.

"It took so much of the humanness away": Health care professional experiences providing care to dying patients during COVID-19.

COVID-19 has affected healthcare in profound and unprecedented ways, distorting the experiences of patients and healthcare professionals (HCPs) alike. One area that has received little attention is how COVID-19 affected HCPs caring for dying patients. The goal of this study was to examine the experiences of HCPs working with dying patients during the COVID-19 pandemic. Between July 2020-July 2021, we recruited HCPs (N = 25) across Canada. We conducted semi-structured interviews, using a qualitative study design rooted in constructivist grounded theory methodology. The core themes identified were the impact of the pandemic on care utilization, the impact of infection control measures on provision of care, moral distress in the workplace, impact on psychological wellbeing, and adaptive strategies to help HCPs manage emotions and navigate pandemic imposed changes. This is the first Canadian study to qualitatively examine the experiences of HCPs providing care to dying patients during the COVID-19 pandemic. Implications include informing supportive strategies and shaping policies for HCPs providing palliative care.

Neuroticism as a moderator of symptom-related distress and depression in 4 noncancer end-of-life populations.

OBJECTIVES: Neuroticism is a significant predictor of adverse psychological outcomes in patients with cancer. Less is known about how this relationship manifests in those with noncancer illness at the end-of-life (EOL). The objective of this study was to examine the impact of neuroticism as a moderator of physical symptoms and development of depression in patients with amyotrophic lateral sclerosis (ALS), chronic obstructive pulmonary disease (COPD), end-stage renal disease (ESRD), and frailty in the last 6 months of life. METHODS: We met this objective using secondary data collected in the Dignity and Distress across End-of-Life Populations study. The data included N = 404 patients with ALS (N = 101), COPD (N = 100), ESRD (N = 101), and frailty (N = 102) in the estimated last 6 months of life, with a range of illness-related symptoms, assessed longitudinally at 2 time points. We examined neuroticism as a moderator of illness-related symptoms at Time 1 (∼6 months before death) and depression at Time 2 (∼3 months before death) using ordinary least squares regression. RESULTS: Results revealed that neuroticism significantly moderated the relationship between the following symptoms and depression measured 3 months later: drowsiness, fatigue, shortness of breath, wellbeing (ALS); drowsiness, trouble sleeping, will to live, activity (COPD); constipation (ESRD); and weakness and will to live (frailty). SIGNIFICANCE OF RESULTS: These findings suggest that neuroticism represents a vulnerability factor that either attenuates or amplifies the relationship of specific illness and depressive symptoms in these noncancer illness groups at the EOL. Identifying those high in neuroticism may provide insight into patient populations that require special care at the EOL.

Psychological Comorbidity and Intervention in Inflammatory Bowel Disease.

Inflammatory bowel disease (IBD) is associated with significant psychological comorbidities, with associated impacts on patient quality of life, disease course, and health care costs. The present article reviews the latest evidence on the etiology of psychological comorbidities in IBD, with a focus on shared inflammatory pathways. The current state of practice in managing and understanding psychological comorbidities from the perspective of both gastroenterology practice and psychological treatment is reviewed, with a focus on evidence-based treatments shown to be effective in managing depression, anxiety, stress, and improving IBD-related health outcomes.

An environmental scan of visitation policies in Canadian intensive care units during the first wave of the COVID-19 pandemic.

PURPOSE: In response to the rapid spread of SARS-CoV-2, hospitals in Canada enacted temporary visitor restrictions to limit the spread of COVID-19 and preserve personal protective equipment supplies. This study describes the extent, variation, and fluctuation of Canadian adult intensive care unit (ICU) visitation policies before and during the first wave of the COVID-19 pandemic. METHODS: We conducted an environmental scan of Canadian hospital visitation policies throughout the first wave of the pandemic. We conducted a two-phased study analyzing both quantitative and qualitative data. RESULTS: We collected 257 documents with reference to visitation policies (preCOVID, 101 [39%]; midCOVID, 71 [28%]; and lateCOVID, 85 [33%]). Of these 257 documents, 38 (15%) were ICU-specific and 70 (27%) referenced the ICU. Most policies during the midCOVID/lateCOVID pandemic period allowed no visitors with specific exceptions (e.g., end-of-life). Framework analysis revealed five overarching themes: 1) reasons for restricted visitation policies; 2) visitation policies and expectations; 3) exceptions to visitation policy; 4) patient and family-centred care; and 5) communication and transparency. CONCLUSIONS: During the first wave of the COVID-19 pandemic, most Canadian hospitals had public-facing visitor restriction policies with specific exception categories, most commonly for patients at end-of-life, patients requiring assistance, or COVID-19 positive patients (varying from not allowed to case-by-case). Further studies are needed to understand the consistency with which visitation policies were operationalized and how they may have impacted patient- and family-centred care.

RéSUMé: OBJECTIF: En réponse à la propagation rapide du SRAS-CoV-2, les hôpitaux du Canada ont adopté des restrictions temporaires pour les visites afin de limiter la propagation de la COVID-19 et de préserver les stocks d'équipements de protection individuelle. Cette étude décrit l'ampleur, les variations et fluctuations des politiques canadiennes concernant les visites aux unités de soins intensifs (USI) pour adultes avant et pendant la première vague de la pandémie de COVID-19. MéTHODE: Nous avons réalisé une étude de milieu des politiques hospitalières canadiennes concernant les visites tout au long de la première vague de la pandémie. Nous avons mené une étude en deux phases analysant des données quantitatives et qualitatives. RéSULTATS: Nous avons recueilli 257 documents faisant référence aux politiques de visites (pré-COVID, 101 [39 %]; mid-COVID, 71 [28 %]; et COVID-tardif, 85 [33 %]). Sur ces 257 documents, 38 (15 %) étaient spécifiques aux USI et 70 (27 %) faisaient référence aux USI. La plupart des politiques au cours de la période pandémique mid-COVID/COVID-tardif ne permettaient aucune visite sauf exception spécifique (p. ex., fin de vie). L'analyse du cadre a révélé cinq thèmes généraux : 1) les raisons des restrictions des politiques de visites; 2) les politiques et attentes en matière de visites; 3) les exceptions aux politiques de visites; 4) les soins aux patients et centrés sur la famille; et 5) la communication et la transparence. CONCLUSION: Au cours de la première vague de la pandémie de COVID-19, la plupart des hôpitaux canadiens avaient des politiques de restriction des visites s'appliquant au public avec des catégories d'exception spécifiques, le plus souvent pour les patients en fin de vie, les patients nécessitant de l'aide ou les patients COVID-positifs (variant d'une interdiction au cas par cas). D'autres études sont nécessaires pour comprendre l'uniformité avec laquelle les politiques de visites ont été mises en œuvre et comment elles ont pu avoir une incidence sur les soins centrés sur le patient et la famille.

The 5-Year Incidence of Mental Disorders in a Population-Based ICU Survivor Cohort.

OBJECTIVE: To estimate incidence of newly diagnosed mental disorders among ICU patients. DESIGN: Retrospective-matched cohort study using a population-based administrative database. SETTING: Manitoba, Canada. PARTICIPANTS: A total of 49,439 ICU patients admitted between 2000 and 2012 were compared with two control groups (hospitalized: n = 146,968 and general population: n = 141,937), matched on age (± 2 yr), sex, region of residence, and hospitalization year. INTERVENTION: None. MEASUREMENTS AND MAIN RESULTS: Incident mental disorders (mood, anxiety, substance use, personality, posttraumatic stress disorder, schizophrenia, and psychotic disorders) not diagnosed during the 5-year period before the index ICU or hospital admission date (including matched general population group), but diagnosed during the subsequent 5-year period. Multivariable survival models adjusted for sociodemographic variables, Charlson comorbidity index, admission diagnostic category, and number of ICU and non-ICU exposures. ICU cohort had a 14.5% (95% CI, 14.0-15.0) and 42.7% (95% CI, 42.0-43.5) age- and sex-standardized incidence of any diagnosed mental disorder at 1 and 5 years post-ICU exposure, respectively. In multivariable analysis, ICU cohort had increased risk of any diagnosed mental disorder at all time points versus the hospitalized cohort (year 5: adjusted hazard ratio, 2.00; 95% CI, 1.80-2.23) and the general population cohort (year 5: adjusted hazard ratio, 3.52; 95% CI, 3.23-3.83). A newly diagnosed mental disorder was associated with younger age, female sex, more recent admitting years, presence of preexisting comorbidities, and repeat ICU admission. CONCLUSIONS: ICU admission is associated with an increased incidence of mood, anxiety, substance use, and personality disorders over a 5-year period.

Psychotherapeutic Considerations for Patients With Terminal Illness.

Dignity has gained increasing attention as a vital component of quality of life and quality of end-of-life care. This article reviews psychological, spiritual, existential, and physical issues facing patients at the end of life as well as practical considerations in providing therapy for this population. The authors reviewed several evidence-based treatments for enhancing end-of-life experience and mitigating suffering, including a primary focus on dignity therapy and an additional review of meaning-centered psychotherapy, acceptance and commitment therapy, and cognitive-behavioral therapy. Each of these therapies has an emerging evidence base, but they have not been compared to each other in trials. Thus, the choice of psychotherapy for patients at the end of life will reflect patient characteristics, therapist orientation and expertise with various approaches, and feasibility within the care context. Future research is needed to directly compare the efficacy and feasibility of these interventions to determine optimal care delivery.

Preventing Posttraumatic Stress in ICU Survivors: A Single-Center Pilot Randomized Controlled Trial of ICU Diaries and Psychoeducation.

OBJECTIVES: Critical illness can have a significant psychological impact on patients and their families. To inform the design of a larger trial, we assessed feasibility of ICU diaries and psychoeducation to prevent posttraumatic stress disorder, depression, and anxiety following ICU stays. DESIGN: Four-arm pilot randomized controlled trial. SETTING: A 10-bed tertiary ICU in Winnipeg, MB, Canada. PATIENTS: Critically ill patients greater than 17 years old with predicted ICU stays greater than 72 hours and mechanical ventilation duration greater than 24 hours. INTERVENTIONS: Patients were randomized to usual care, ICU diary, psychoeducation, or both ICU diary and psychoeducation. MEASUREMENTS AND MAIN RESULTS: Our primary objective was to determine feasibility measured by enrollment/mo. Secondary outcomes included acceptability of the ICU diary intervention and psychological distress, including patients' memories 1 week post ICU using the ICU Memory Tool, posttraumatic stress disorder (Impact of Events Scale-Revised), depression, and anxiety symptoms (Hospital Anxiety and Depression Scale) 30 and 90 days post ICU. Over 3.5 years, we enrolled 58 patients, an average of 1.9 participants/mo. Families and healthcare providers wrote a mean of 3.2 diary entries/d (SD, 2.9) and indicated positive attitudes and low perceived burden toward ICU diary participation. A majority of patients reported distressing memories of their ICU stay. Those who received the diary intervention had significantly lower median Hospital Anxiety and Depression Scale anxiety (3.0 [interquartile range, 2-6.25] vs 8.0 [interquartile range, 7-10]; p = 0.01) and depression (3.0 [interquartile range, 1.75-5.25] vs 5.0 [interquartile range, 4-9]; p = 0.04) symptom scores at 90 days than patients who did not receive a diary. CONCLUSIONS: ICU diaries are a feasible intervention in a tertiary Canadian ICU context. Preliminary evidence supports the efficacy of ICU diaries to reduce psychological morbidity following discharge.

The 5-year pre- and post-hospitalization treated prevalence of mental disorders and psychotropic medication use in critically ill patients: a Canadian population-based study.

PURPOSE: The interplay between critical illness and mental disorders is poorly understood. The purpose of this study is to measure both the treated prevalence of mental disorders and psychotropic medication use before and after hospitalization and the impact of intensive care unit (ICU) admission on these outcomes. METHODS: Using a population-based administrative database in Manitoba, Canada, 49,439 ICU patients admitted between 2000 and 2012 were compared to two matched comparison groups (hospitalized; n = 146,968 and general population; n = 141,937). Treated prevalence of mental disorders and psychotropic medication prescriptions were measured in the 5-year periods before and after the hospitalization. Multivariable models compared adjusted prevalence ratios (APRs) between populations. RESULTS: The 5-year treated mental disorder prevalence in the ICU population increased from 41.5% pre-hospitalization to 55.6% post-hospitalization. Compared to non-ICU hospitalized patients, the adjusted treated mental disorder prevalence in ICU patients was lower prior to hospitalization (1-year APR 0.94, 95% CI 0.92-0.97, p < 0.0001; 5-year APR 0.99, 95% CI 0.98-1.00, p = 0.1), but higher following discharge (1-year APR 1.08, 95% CI 1.05-1.11, p < 0.0001, 5-year APR 1.03, 95% CI 1.01-1.05, p < 0.0001). A high proportion of ICU patients received antidepressant, anxiolytic and sedative-hypnotic prescriptions before and after their hospitalization. In multivariable analyses, ICU exposure was associated with an increase in mood, anxiety and psychotic disorders, and sedative-hypnotics use (p < 0.0001 for all Time × Group interactions). CONCLUSIONS: During the 5 years after admission to ICU, there is a significant increase in treated prevalence of mental disorders and psychotropic medication use compared to the 5 years prior to ICU and compared to general population and hospital cohorts. Prevention and intervention programs that identify and treat mental disorders among survivors of critical illness warrant further study.

Dignity and Distress towards the End of Life across Four Non-Cancer Populations.

OBJECTIVE: The purpose of this study was to identify four non-cancer populations that might benefit from a palliative approach; and describe and compare the prevalence and patterns of dignity related distress across these diverse clinical populations. DESIGN: A prospective, multi-site approach was used. SETTING: Outpatient clinics, inpatient facilities or personal care homes, located in Winnipeg, Manitoba and Edmonton, Alberta, Canada. PARTICIPANTS: Patients with advanced Amyotrophic Lateral Sclerosis (ALS), Chronic Obstructive Pulmonary Disease (COPD), End Stage Renal Disease (ESRD); and the institutionalized alert frail elderly. MAIN OUTCOME MEASURE: In addition to standardized measures of physical, psychological and spiritual aspects of patient experience, the Patient Dignity Inventory (PDI). RESULTS: Between February 2009 and December 2012, 404 participants were recruited (ALS, 101; COPD, 100; ESRD, 101; and frail elderly, 102). Depending on group designation, 35% to 58% died within one year of taking part in the study. While moderate to severe loss of sense of dignity did not differ significantly across the four study populations (4-11%), the number of PDI items reported as problematic was significantly different i.e. ALS 6.2 (5.2), COPD 5.6 (5.9), frail elderly 3.0 (4.4) and ESRD 2.3 (3.9) [p < .0001]. Each of the study populations also revealed unique and distinct patterns of physical, psychological and existential distress. CONCLUSION: People with ALS, COPD, ESRD and the frail elderly face unique challenges as they move towards the end of life. Knowing the intricacies of distress and how they differ across these groups broadens our understanding of end-of-life experience within non-cancer populations and how best to meet their palliative care needs.

Cause and rate of death in people with schizophrenia across the lifespan: a population-based study in Manitoba, Canada.

OBJECTIVE: To compare the causes and rates of death for people with and without schizophrenia in Manitoba, Canada. METHOD: Using de-identified administrative databases at the Manitoba Centre for Health Policy, a population-based analysis was performed to compare age- and sex-adjusted 10-year (1999-2008) mortality rates, overall and by specific cause, of decedents aged 10 years or older who had 1 diagnosis of schizophrenia (ICD-9-CM code 295, ICD-10-CA codes F20, F21, F23.2, F25) over a 12-year period (N = 9,038) to the rest of the population (N = 969,090). RESULTS: The mortality rate for those with schizophrenia was double that of the rest of the population (20.00% vs. 9.37%). The all-cause mortality rate was higher for people with schizophrenia compared to all others (168.9 vs. 99.1 per thousand; relative risk [RR] = 1.70, P < .0001); rates of death due to suicide (RR = 8.67, P < .0001), injury (RR = 2.35, P < .0001), respiratory illness (RR = 2.00, P < .0001), and circulatory illness (RR = 1.64, P < .0001) were also significantly higher in people with schizophrenia. Overall cancer deaths were similar (28.6 vs. 27.3 per thousand, P = .42, NS) except in the middle-aged group (40-59), in which cancer death rates were significantly higher for those with schizophrenia (28.7 vs. 11.6 per thousand; RR = 2.48, P < .01). Mortality rates due to lung cancer were significantly higher in people with schizophrenia (9.4 vs. 6.4 per thousand, RR = 1.45, P < .001). CONCLUSIONS: People with schizophrenia are at increased risk of death compared to the general population, and the majority of these deaths are occurring in older age from physical disease processes. Risk of cancer mortality is significantly higher in middle-aged but not younger or older patients with schizophrenia. Understanding these patients' vulnerabilities to physical illness has important public health implications for prevention, screening, and treatment as the population ages.

Comparative health care use patterns of people with schizophrenia near the end of life: a population-based study in Manitoba, Canada.

CONTEXT: The rate of health care and palliative care utilization for patients with schizophrenia near the end-of-life is currently unknown. OBJECTIVE: Compare rate of health care services, including palliative care, used in the last 6-24months of life for patients with and without schizophrenia. DESIGN: Using the de-identified administrative data Repository at the Manitoba Centre for Health Policy; a matched cohort study between 1995/96 and 2007/08,comparing healthcare services utilized six months to two years prior to death of all (de-identified) decedents with a diagnosis of schizophrenia >10years to decedents without a schizophrenia diagnosis. SETTING: province of Manitoba, Canada (population 1.235 million). PARTICIPANTS: Schizophrenia definition: ICD-9-CM 295, or ICD-10-CA code of F20, F21, F23.2, F25 in hospital or physician files, over a 12-year period 1987-1998, in the 12years prior to death for each individual. Decedents were matched (1:3) on age, sex, geography and date of death ±2months. MAIN OUTCOME MEASURES: Health service utilization rates within six-months to two years prior to death. RESULTS: In the last six months of life, compared to their matched cohort: decedents with schizophrenia had higher rates (52.1% vs. 24.4%, p<.00001) and number of days (89.2 vs. 40.3days, p<.0001) residing in a nursing home; had higher ambulatory visit rates to general practitioners (6.4 vs. 5.5 visits per person, p<.0001), higher rate of visits to psychiatrists (0.53 vs. 0.07 visits per person) and lower rates of seeing other specialists. They were less likely to have opioid analgesia (aRR=0.7157, p-value=0.0006) or to receive palliative care (aOR=0.48, 95% CI 0.41-0.57). CONCLUSION: End-of-life care is lacking for patients with schizophrenia. Compared to their matched cohort, these patients were much more likely to die in nursing homes, less likely to see specialists (other than psychiatrists), less likely to be prescribed analgesics, and less likely to receive palliative care.