End-of-Life Care Among Patients With Kidney Failure on Maintenance Dialysis: A Retrospective Population-Based Study.

Background: Nephrologists routinely provide end-of-life care for patients with kidney failure (KF) on maintenance dialysis. Involvement of primary care and palliative care physicians may enhance this experience. Objective: The objective was to describe outpatient care patterns in the last year of life and the end-of-life acute care utilization for patients with KF on maintenance dialysis. Design: Retrospective cohort study using population-level health administrative data. Setting & Participants: Outpatient and inpatient care during the last year of life among patients who died between 2017 and 2019, receiving maintenance dialysis in Ontario, Canada. Measurements: The primary exposure is patterns of physician specialties providing outpatient care in the last year of life. Outcomes include outpatient encounters in the last year of life, acute care visitation in the last month of life, and place of death. Methods: We reported the count and percentage of categorical outcomes and the median (interquartile range) for numeric outcomes. We produced time series plots of the mean monthly percentage of encounters to different specialties stratified by physician specialty patterns. We evaluated differences in outcomes by physician specialty patterns using analysis of variance (ANOVA) and Pearson's chi-square tests (P < .05, two-tailed). Results: Among 6866 patients, the median age at death was 73, 36.1% were female, and 87.8% resided in urban regions. Three patterns emerged: a primary care, nephrology, and palliative care triad (25.5%); a primary care and nephrology dyad (59.3%); and a non-primary care pattern (15.2%). Palliative care involvement is concentrated near death. Of all, 81.4% spent at least 1 day in hospital or emergency department in the last month, but those with primary care, palliative care, and nephrology involvement had the fewest acute care deaths (65.8%). Limitations: Outpatient care patterns were defined using physician billing codes, potentially missing care from other providers. Conclusions: Nephrology and primary care predominantly manage outpatient care in the last year of life for patients with KF on maintenance dialysis, with consistent acute care use across care patterns except for the place of death. Future research should explore associations between patterns of care and end-of-life outcomes to identify the most optimal model of care for patients with KF on maintenance dialysis.

Contexte: Il est courant pour les néphrologues de prodiguer des soins de fin de vie aux patients souffrant d'insuffisance rénale (IR) sous dialyse d'entretien. Cette expérience pourrait être enrichie par la participation des médecins des unités de soins primaires et de soins palliatifs. Objectif: Cette étude visait à décrire les modèles de soins ambulatoires prodigués au cours de la dernière année de vie et l'utilisation des soins aigus en fin de vie chez les patients atteints d'IR sous dialyse d'entretien. Conception: Étude de cohorte populationnelle rétrospective réalisée à partir des données administratives du système de santé. Cadre et sujets de l'étude: Les soins ambulatoires et hospitaliers au cours de la dernière année de vie chez les patients décédés sous dialyse d'entretien entre 2017 et 2019 en Ontario (Canada). Mesures: La principale mesure est le profil des spécialités médicales qui fournissent des soins ambulatoires dans la dernière année de vie. Les données recueillies comprennent les consultations externes au cours de la dernière année de vie, les visites en soins aigus au cours du dernier mois de vie et le lieu du décès. Méthodologie: Nous avons rapporté le nombre et le pourcentage de résultats catégoriels, ainsi que la médiane (écart interquartile) des résultats numériques. Nous avons produit des graphiques chronologiques du pourcentage mensuel moyen de consultations avec différentes spécialités, stratifiées selon les spécialités médicales. Nous avons évalué les différences dans les résultats selon les profils de spécialités médicales en utilisant les tests ANOVA et Chi-Square de Pearson (P <,05; bilatéral). Résultats: Des 6 866 patients inclus (âge médian au décès: 73 ans), 36,1% étaient des femmes et 87,8% vivaient en région urbaine. Trois modèles sont apparus: une triade soins primaires, néphrologie et soins palliatifs (25,5%); une dyade soins primaires et néphrologie (59,3%); et un modèle de soins non primaires (15,2%). La participation des soins palliatifs est concentrée autour du moment du décès. Une grande majorité des patients (81,4%) avait passé au moins une journée à l'hôpital ou aux urgences au cours du dernier mois, mais les personnes qui avaient bénéficié d'une triade de soins (primaires, néphrologie et soins palliatifs) présentaient une moins grande proportion de décès en soins aigus (65,8%). Limites: Les modèles de soins ambulatoires ont été définis à l'aide des codes de facturation des médecins, ce qui pourrait avoir exclu les soins dispensés par d'autres prestataires. Conclusion: Les soins ambulatoires au cours de la dernière année de vie des patients atteints d'IR sous dialyse d'entretien sont principalement prodigués par la néphrologie et les soins primaires, avec une utilisation constante des soins aigus dans tous les modèles de soins, sauf pour le lieu du décès. Les futures recherches devraient explorer les liens entre les modèles de soins et les résultats en fin de vie afin d'identifier le modèle de soins le plus optimal pour les patients atteints d'IR sous dialyse d'entretien.

Advancing the Care Experience for patients receiving Palliative care as they Transition from hospital to Home (ACEPATH): Codesigning an intervention to improve patient and family caregiver experiences.

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.

Long-term bereavement outcomes in family members of those who died in acute care hospitals before and during the first wave of COVID-19: A cohort study.

BACKGROUND: Severe grief is highly distressing and prevalent up to 1 year post-death among people bereaved during the first wave of COVID-19, but no study has assessed changes in grief severity beyond this timeframe. AIM: Understand the trajectory of grief during the pandemic by reassessing grief symptoms in our original cohort 12-18 months post-death. DESIGN: Prospective matched cohort study. SETTINGS/PARTICIPANTS: Family members of decedents who died in an acute care hospital between November 1, 2019 and August 31, 2020 in Ottawa, Canada. Family members of patients who died of COVID (COVID +ve) were matched 2:1 with those who died of non-COVID illness (COVID -ve) during pandemic wave 1 or immediately prior to its onset (pre-COVID). Grief was assessed using the Inventory of Complicated Grief (ICG). RESULTS: Follow-up assessment was completed by 92% (111/121) of family members in the initial cohort. Mean ICG score on the 12-18-month assessment was 19.9 (SD = 11.8), and severe grief (ICG > 25) was present in 28.8% of participants. One-third (33.3%) had either a persistently high (>25) or worsening ICG score (⩾4-point increase between assessments). Using a modified Poisson regression analysis, persistently high or worsening ICG scores were associated with endotracheal intubation in the deceased, but not cause of death (COVID +ve, COVID -ve, pre-COVID) or physical presence of the family member in the final 48 h of life. CONCLUSIONS: Severe grief is a substantial source of psychological morbidity in the wake of the COVID-19 pandemic, persisting more than a year post-death. Our findings highlight an acute need for effective and scalable means of addressing severe grief.

Comorbidities, symptoms and end-of-life medication use in hospitalised decedents before and during the COVID-19 pandemic: a retrospective regional cohort study in Ottawa, Canada.

OBJECTIVE: To compare comorbidities, symptoms and end-of-life (EoL) palliative medication (antisecretories, opioids, antipsychotics and sedatives) use among decedents before and during the COVID-19 pandemic. DESIGN: In a retrospective cohort study, decedent records in three acute care hospitals were abstracted, generating a prepandemic (November 2019-February 2020) group (pre-COVID) and two intrapandemic (March-August 2020, wave 1) groups, one without (COVID-ve) and one with COVID-19 infection (COVID+ve). Control group decedents were matched 2:1 on age, sex and care service (medicine/intensive care unit (ICU)) with COVID+ve decedents. SETTING: Three regional acute care teaching hospitals in Ottawa, Canada PARTICIPANTS: Decedents (N=425): COVID+ve (n=85), COVID-ve (n=170) and pre-COVID (n=170). MAIN OUTCOME MEASURES: Data were abstracted regarding demographics, admission comorbidities and symptoms, and EoL medication use; opioid doses were standardised to parenteral morphine equivalent daily dose (MEDD), and the predictors of upper quartile MEDD in the last 24 hours of life were examined in multivariable logistic regression with adjusted ORs (aORs) and 95% CIs. RESULTS: The prevalence of dementia (41% vs 28% and 26%, p=0.03), breathlessness (63.5% vs 42% and 47%, p<0.01), cough (40% vs 27% and 19%, p<0.01) and fever (54% vs 9% and 13.5%) was higher in COVID+ve versus pre-COVID and COVID-ve groups, respectively. The median (IQR) of MEDD over the last 72 hours of life was 16.7 (9-36.5) vs 13.5 (5.7-21.8) and 10.5 (5.3-23.8) for COVID+ve versus pre-COVID and COVID-ve groups, respectively, (p=0.007). Male sex, COVID+ve grouping, ICU death and high-flow nasal cannula use predicted upper quartile MEDD dose, aORs (95% CIs): 1.84 (1.05 to 3.22), 2.62 (1.29 to 5.3), 5.14 (2.47 to 10.7) and 1.93 (1.05 to 3.52), respectively. COVID+ve group decedents used highest lorazepam and propofol doses. CONCLUSIONS: COVID-19 decedents, particularly those in ICU, required higher EoL opioid and sedating medication doses than matched prepandemic or intrapandemic controls. These findings should inform and guide clinical practice.

Bereavement outcomes in family members of those who died in acute care hospitals before and during the first wave of COVID-19: A cohort study.

BACKGROUND: The COVID-19 pandemic has caused millions of deaths worldwide, leading to symptoms of grief among the bereaved. Neither the burden of severe grief nor its predictors are fully known within the context of the pandemic. AIM: To determine the prevalence and predictors of severe grief in family members who were bereaved early in the COVID-19 pandemic. DESIGN: Prospective, matched cohort study. SETTING/PARTICIPANTS: Family members of people who died in an acute hospital in Ottawa, Canada between November 1, 2019 and August 31, 2020. We matched relatives of patients who died of COVID (COVID +ve) with those who died of non-COVID illness either during wave 1 of the pandemic (COVID -ve) or immediately prior to its onset (pre-COVID). We abstracted decedents' medical records, contacted family members >6 months post loss, and assessed grief symptoms using the Inventory of Complicated Grief-revised. RESULTS: We abstracted data for 425 decedents (85 COVID +ve, 170 COVID -ve, and 170 pre-COVID), and 110 of 165 contacted family members (67%) consented to participate. Pre-COVID family members were physically present more in the last 48 h of life; the COVID +ve cohort were more present virtually. Overall, 35 family members (28.9%) had severe grief symptoms, and the prevalence was similar among the cohorts (p = 0.91). Grief severity was not correlated with demographic factors, physical presence in the final 48 h of life, intubation, or relationship with the deceased. CONCLUSION: Severe grief is common among family members bereaved during the COVID-19 pandemic, regardless of the cause or circumstances of death, and even if their loss took place before the onset of the pandemic. This suggests that aspects of the pandemic itself contribute to severe grief, and factors that normally mitigate grief may not be as effective.

Comparative end-of-life communication and support in hospitalised decedents before and during the COVID-19 pandemic: a retrospective regional cohort study in Ottawa, Canada.

OBJECTIVE: To compare end-of-life in-person family presence, patient-family communication and healthcare team-family communication encounters in hospitalised decedents before and during the COVID-19 pandemic. DESIGN: In a regional multicentre retrospective cohort study, electronic health record data were abstracted for a prepandemic group (pre-COVID) and two intrapandemic (March-August 2020, wave 1) groups, one COVID-19 free (COVID-ve) and one with COVID-19 infection (COVID+ve). Pre-COVID and COVID-ve groups were matched 2:1 (age, sex and care service) with the COVID+ve group. SETTING: One quaternary and two tertiary adult, acute care hospitals in Ottawa, Canada. PARTICIPANTS: Decedents (n=425): COVID+ve (n=85), COVID-ve (n=170) and pre-COVID (n=170). MAIN OUTCOME MEASURES: End-of-life (last 48 hours) in-person family presence and virtual (video) patient-family communication, and end-of-life (last 5 days) virtual team-family communication encounter occurrences were examined using logistic regression with ORs and 95% CIs. End-of-life (last 5 days) rates of in-person and telephone team-family communication encounters were examined using mixed-effects negative binomial models with incidence rate ratios (IRRs) and 95% CIs. RESULTS: End-of-life in-person family presence decreased progressively across pre-COVID (90.6%), COVID-ve (79.4%) and COVID+ve (47.1%) groups: adjusted ORs=0.38 (0.2-0.73) and 0.09 (0.04-0.17) for COVID-ve and COVID+ve groups, respectively. COVID-ve and COVID+ve groups had reduced in-person but increased telephone team-family communication encounters: IRRs=0.76 (0.64-0.9) and 0.61 (0.47-0.79) for in-person, and IRRs=2.6 (2.1-3.3) and 4.8 (3.7-6.1) for telephone communications, respectively. Virtual team-family communication encounters occurred in 17/85 (20%) and 10/170 (5.9%) of the COVID+ve and COVID-ve groups, respectively: adjusted OR=3.68 (1.51-8.95). CONCLUSIONS: In hospitalised COVID-19 pandemic wave 1 decedents, in-person family presence and in-person team-family communication encounters decreased at end of life, particularly in the COVID+ve group; virtual modalities were adopted for communication, and telephone use increased in team-family communication encounters. The implications of these communication changes for the patient, family and healthcare team warrant further study.