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Objectives: This study aimed to assess the acceptability, value, and perceived barriers of using electronic risk calculators for predicting and communicating the risk of death in community-dwelling older adults. Methods: One focus group and eight interviews were conducted with 16 participants with experience caring for patients or family members at end of life. A prototype mortality risk tool was used to anchor discussions. Data were analysed using a qualitative content analysis approach. Results: Five themes emerged: acceptability, communication, barriers to use, broadening the circle of care, and tool limitations. Participants found the tool helpful for preparation, planning, and providing care, but disagreed on its community availability. Personalized risk estimates were valued for facilitating early goals of care conversations and normalizing discussions about death. However, concerns were raised about the tool's interpretation for individuals with different language, cultural, or educational backgrounds. Conclusions: While electronic risk calculators were found to be acceptable, balancing autonomy with varying preferences for receiving the information and potential need for support is crucial. Innovation: Providing patient-oriented life-expectancy estimates can enhance decisional capacity and facilitate shared decision-making between patients, their families, and healthcare professionals. Further research is needed to explore effective communication of personalized risk tools and additional benefits, harms, and barriers to implementation.
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Exaggeration of type 2 immune responses promotes lung inflammation and altered lung development; however, eosinophils, despite expansion in the postnatal lung, have not been specifically assessed in the context of neonatal lung disease. Furthermore, early life factors including prematurity and respiratory infection predispose infants to chronic obstructive pulmonary disease later in life. To assess eosinophils in the developing lung and how they may contribute to chronic lung disease, we generated mice harboring eosinophil-specific deletion of the negative regulatory enzyme SH2 domain-containing inositol 5' phosphatase-1. This increased the activity and number of pulmonary eosinophils in the developing lung, which was associated with impaired lung development, expansion of activated alveolar macrophages (AMφ), multinucleated giant cell formation, enlargement of airspaces, and fibrosis. Despite regression of eosinophils following completion of lung development, AMφ-dominated inflammation persisted, alongside lung damage. Bone marrow chimera studies showed that SH2 domain-containing inositol 5' phosphatase-1-deficient eosinophils were not sufficient to drive inflammatory lung disease in adult steady-state mice but once inflammation and damage were present, it could not be resolved. Depletion of eosinophils during alveolarization alleviated pulmonary inflammation and lung pathology, demonstrating an eosinophil-intrinsic effect. These results show that the presence of activated eosinophils during alveolarization aggravates AMφs and promotes sustained inflammation and long-lasting lung pathology.
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BACKGROUND: Language barriers can impact health care and outcomes. Valid and reliable language data is central to studying health inequalities in linguistic minorities. In Canada, language variables are available in administrative health databases; however, the validity of these variables has not been studied. This study assessed concordance between language variables from administrative health databases and language variables from the Canadian Community Health Survey (CCHS) to identify Francophones in Ontario. METHODS: An Ontario combined sample of CCHS cycles from 2000 to 2012 (from participants who consented to link their data) was individually linked to three administrative databases (home care, long-term care [LTC], and mental health admissions). In total, 27,111 respondents had at least one encounter in one of the three databases. Language spoken at home (LOSH) and first official language spoken (FOLS) from CCHS were used as reference standards to assess their concordance with the language variables in administrative health databases, using the Cohen kappa, sensitivity, specificity, positive predictive value (PPV), and negative predictive values (NPV). RESULTS: Language variables from home care and LTC databases had the highest agreement with LOSH (kappa = 0.76 [95%CI, 0.735-0.793] and 0.75 [95%CI, 0.70-0.80], respectively) and FOLS (kappa = 0.66 for both). Sensitivity was higher with LOSH as the reference standard (75.5% [95%CI, 71.6-79.0] and 74.2% [95%CI, 67.3-80.1] for home care and LTC, respectively). With FOLS as the reference standard, the language variables in both data sources had modest sensitivity (53.1% [95%CI, 49.8-56.4] and 54.1% [95%CI, 48.3-59.7] in home care and LTC, respectively) but very high specificity (99.8% [95%CI, 99.7-99.9] and 99.6% [95%CI, 99.4-99.8]) and predictive values. The language variable from mental health admissions had poor agreement with all language variables in the CCHS. CONCLUSIONS: Language variables in home care and LTC health databases were most consistent with the language often spoken at home. Studies using language variables from administrative data can use the sensitivity and specificity reported from this study to gauge the level of mis-ascertainment error and the resulting bias.
Subject(s)
Language , Humans , Ontario , Female , Male , Middle Aged , Databases, Factual/statistics & numerical data , Adult , Aged , Communication Barriers , Health Surveys/statistics & numerical data , Health Surveys/methods , Long-Term Care/statistics & numerical data , Long-Term Care/standards , Long-Term Care/methods , Home Care Services/statistics & numerical data , Home Care Services/standards , Reproducibility of ResultsABSTRACT
BACKGROUND: Advancing health equity requires more contextualised evidence. OBJECTIVES: To synthesise published evidence using an existing framework on the origins of health disparities and determine care-related outcome disparities for residents of long-term care, comparing minoritised populations to the context-specific dominant population. DESIGN: Systematic review. SUBJECTS: Residents of 24-hour long-term care homes. METHODS: The protocol was registered a priori with PROSPERO (CRD42021269489). Literature published between 1 January 2000 and 26 September 2021, was searched, including studies comparing baseline characteristics and outcomes in minoritised versus dominant populations. Dual screening, two-reviewer verification for extraction, and risk of bias assessments were conducted to ensure rigour. Studies were synthesized using a conceptual framework to contextualise evidence according to multi-level factors contributing to the development of care disparities. RESULTS: Twenty-one of 34 included studies demonstrated disparities in care outcomes for minoritised groups compared to majority groups. Thirty-one studies observed differences in individual-level characteristics (e.g. age, education, underlying conditions) upon entry to homes, with several outcome disparities (e.g. restraint use, number of medications) present at baseline and remaining or worsening over time. Significant gaps in evidence were identified, particularly an absence of literature on provider information and evidence on the experience of intersecting minority identities that contribute to care-related outcome disparities in long-term care. CONCLUSION: This review found differences in minoritised populations' care-related outcomes. The findings provide guidance for future health equity policy and research-supporting diverse and intersectional capacity building in long-term care.
Subject(s)
Health Equity , Healthcare Disparities , Homes for the Aged , Long-Term Care , Nursing Homes , Humans , Aged , Male , FemaleABSTRACT
BACKGROUND: In Canada, only 15% of patients requiring palliative care receive such services in the year before death. We describe health care utilization patterns among home care users in their last 6 months of life to inform care planning for older people with varying mortality risks and evolving care needs as they decline. METHODS: Using population health administrative data from Ontario, we performed a retrospective cohort study involving home care clients aged 50 years and older who received at least 1 interRAI (Resident Assessment Instrument) Home Care assessment between April 2018 and September 2019. We report the proportion of clients who used acute care, long-term care, and palliative home care services within 6 months of their assessment, stratified by their predicted 6-month mortality risk using a prognostic tool called the Risk Evaluation for Support: Predictions for Elder-life in their Communities Tool (RESPECT) and vital status. RESULTS: The cohort included 247 377 adults, 11.9% of whom died within 6 months of an assessment. Among decedents, 50.6% of those with a RESPECT-estimated median survival of fewer than 3 months received at least 1 nonphysician palliative home care visit before death. This proportion declined to 38.7% and 29.5% among decedents with an estimated median survival between 3 and 6 months and between 6 and 12 months, respectively. INTERPRETATION: Many older adults in Ontario do not receive any palliative home care before death. Prognostic tools such as RESPECT may improve recognition of reduced life expectancies and palliative care needs of individuals in their final years of life.
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Home Care Services , Terminal Care , Humans , Middle Aged , Aged , Palliative Care/methods , Retrospective Studies , Delivery of Health Care , Ontario/epidemiology , Terminal Care/methodsABSTRACT
OBJECTIVES: Physicians and nurse practitioners (NPs) play critical roles in supporting palliative and end-of-life care in the community. We examined healthcare outcomes among patients who received home visits from physicians and NPs in the 90 days before death. METHODS: We conducted a retrospective cohort study using linked data of adult home care users in Ontario, Canada, who died between 1 January 2018 and 31 December 2019. Healthcare outcomes included medications for pain and symptom management, emergency department (ED) visits, hospitalisations and a community-based death. We compared the characteristics of and outcomes in decedents who received a home visit from an NP, physician and both to those who did not receive a home visit. RESULTS: Half (56.9%) of adult decedents in Ontario did not receive a home visit from a provider in the last 90 days of life; 34.5% received at least one visit from a physician, 3.8% from an NP and 4.9% from both. Compared with those without any visits, having at least one home visit reduced the odds of hospitalisation and ED visits, and increased the odds of receiving medications for pain and symptom management and achieving a community-based death. Observed effects were larger in patients who received at least one visit from both. CONCLUSIONS: Beyond home care, receiving home visits from primary care providers near the end of life may be associated with better outcomes that are aligned with patients' preferences-emphasising the importance of NPs and physicians' role in supporting people near the end of life.
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OBJECTIVE: To describe the timing of involvement of various physician specialties over the last year of life across different levels of primary care physician continuity for differing causes of death. METHODS: We conducted a retrospective cohort study of adults who died in Ontario, Canada, between 1 January 2013 and 31 December 2018, using linked population level health administrative data. Outcomes were median days between death and first and last outpatient palliative care specialist encounter, last outpatient encounter with other specialists and with the usual primary care physician. These were calculated by tertile of score on the Usual Provider Continuity Index, defined as the proportion of outpatient physician encounters with the patient's primary care physician. RESULTS: Patients' (n=395 839) mean age at death was 76 years. With increasing category of usual primary care physician continuity, a larger proportion were palliative care generalists, palliative care specialist involvement decreased in duration and was concentrated closer to death, the primary care physician was involved closer to death, and other specialist physicians ceased involvement earlier. For patients with cancer, palliative care specialist involvement was longer than for other patients. CONCLUSIONS: Compared with patients with lower continuity, those with higher usual provider continuity were more likely to have a primary care physician involved closer to death providing generalist palliative care.
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Background: Despite the demonstrated efficacy of approved COVID-19 vaccines, high levels of hesitancy were observed in the first few months of the COVID-19 vaccines' rollout. Factors contributing to vaccine hesitancy are well-described in the literature. Among the various strategies for promoting vaccine confidence, educational interventions provide a foundationally and widely implemented set of approaches for supporting individuals in their vaccine decisions. However, the evidence around the measurable impact of various educational strategies to improve vaccine confidence is limited. We conducted a scoping review with the aim of exploring and characterizing educational interventions delivered during the pandemic to support COVID-19 vaccine confidence in adults. Methods: We developed a search strategy with a medical information scientist and searched five databases, including Ovid MEDLINE and Web of Science, as well as grey literature. We considered all study designs and reports. Interventions delivered to children or adolescents, interventions on non-COVID-19 vaccines, as well as national or mass vaccination campaigns without documented interaction(s) between facilitator(s) and a specific audience were excluded. Articles were independently screened by three reviewers. After screening 4602 titles and abstracts and 174 full-text articles across two rounds of searches, 22 articles met our inclusion criteria. Ten additional studies were identified through hand searching. Data from included studies were charted and results were described narratively. Results: We included 32 studies and synthesized their educational delivery structure, participants (i.e., facilitators and priority audience), and content. Formal, group-based presentations were the most common type of educational intervention in the included studies (75%). A third of studies (34%) used multiple strategies, with many formal group-based presentations being coupled with additional individual-based interventions (29%). Given the novelty of the COVID-19 vaccines and the unique current context, studies reported personalized conversations, question periods, and addressing misinformation as important components of the educational approaches reviewed. Conclusions: Various educational interventions were delivered during the COVID-19 pandemic, with many initiatives involving multifaceted interventions utilizing both formal and informal approaches that leveraged community (cultural, religious) partnerships when developing and facilitating COVID-19 vaccine education. Train-the-trainer approaches with recognized community members could be of value as trust and personal connections were identified as strong enablers throughout the review.
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OBJECTIVES: To describe variations in the receipt of potentially inappropriate interventions in the last 100 days of life of patients with cancer according to patient characteristics and cancer site. METHODS: We conducted a population-based retrospective cohort study of cancer decedents in Ontario, Canada who died between 1 January 2013 and 31 December 2018. Potentially inappropriate interventions, including chemotherapy, major surgery, intensive care unit admission, cardiopulmonary resuscitation, defibrillation, dialysis, percutaneous coronary intervention, mechanical ventilation, feeding tube placement, blood transfusion and bronchoscopy, were captured via hospital discharge records. We used Poisson regression to examine associations between interventions and decedent age, sex, rurality, income and cancer site. RESULTS: Among 151 618 decedents, 81.3% received at least one intervention, and 21.4% received 3+ different interventions. Older patients (age 95-105 years vs 19-44 years, rate ratio (RR) 0.36, 95% CI 0.34 to 0.38) and women (RR 0.94, 95% CI 0.93 to 0.94) had lower intervention rates. Rural patients (RR 1.09, 95% CI 1.08 to 1.10), individuals in the highest area-level income quintile (vs lowest income quintile RR 1.02, 95% CI 1.01 to 1.04), and patients with pancreatic cancer (vs colorectal cancer RR 1.10, 95% CI 1.07 to 1.12) had higher intervention rates. CONCLUSIONS: Potentially inappropriate interventions were common in the last 100 days of life of cancer decedents. Variations in interventions may reflect differences in prognostic awareness, healthcare access, and care preferences and quality. Earlier identification of patients' palliative care needs and involvement of palliative care specialists may help reduce the use of these interventions at the end of life.
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OBJECTIVES: The COVID-19 pandemic has greatly affected the morbidity and mortality of residents in long-term care (LTC) homes. However, not much is known about its impact on staff's perception of their capacity to provide palliative and end-of-life (EOL) care for LTC residents over the course of the pandemic. We investigated changes in self-reported confidence among LTC workers and their experience in providing palliative and EOL care to residents before and during the COVID-19 pandemic. DESIGN: Mixed-methods evaluation using a survey (n = 19) and semistructured interviews (n = 28). SETTING AND PARTICIPANTS: Frontline workers from 9 LTC homes who participated in Communication at End-of-Life Program in Ontario, Canada, between August 2019 and March 2020. METHODS: The survey captured LTC staff's confidence level, including attitudes toward death and dying; relationships with residents and families; and participation in palliative and EOL care. The interviews identified facilitators and barriers to providing palliative and EOL care during the pandemic. RESULTS: The COVID-19 pandemic negatively impacted frontline LTC staff's confidence in their role as palliative care providers. Participants also reported notable challenges to providing resident-centered palliative and EOL care. Specifically, visitation restriction has led to increased loneliness and isolation of residents and impeded staff's ability to build supportive relationships with families. Furthermore, staffing shortages due to the single-site work restriction and illness increased workload. Psychological stress caused by a fear of COVID-19 infection and transmission also hindered staff's capacity to provide good palliative and EOL care. CONCLUSIONS AND IMPLICATIONS: Frontline LTC staff-even those who felt competent in their knowledge and skills in providing palliative and EOL care after receiving training-reported notable difficulties in providing resident-centered palliative and EOL care during the COVID-19 pandemic.
Subject(s)
COVID-19 , Terminal Care , Humans , Long-Term Care , Pandemics , Ontario/epidemiology , Palliative Care , DeathABSTRACT
BACKGROUND: Physician home visits are associated with better health outcomes, yet most patients near the end of life never receive such a visit. Our objectives were to describe the receipt of physician home visits during the last year of life after a referral to home care - an indication that the patient can no longer live independently - and to measure associations between patient characteristics and receipt of a home visit. METHODS: We conducted a retrospective cohort study using linked population-based health administrative databases housed at ICES. We identified adult (aged ≥ 18 yr) decedents in Ontario who died between Mar. 31, 2013, and Mar. 31, 2018, who were receiving primary care and were referred to publicly funded home care services. We described the provision of physician home visits, office visits and telephone management. We used multinomial logistic regression to calculate the odds of receiving home visits from a rostered primary care physician, controlling for referral during the last year of life, age, sex, income quintile, rurality, recent immigrant status, referral by rostered physician, referral during hospital stay, number of chronic conditions and disease trajectory based on the cause of death. RESULTS: Of the 58 753 decedents referred in their last year of life, 3125 (5.3%) received a home visit from their family physician. Patient characteristics associated with higher odds of receiving home visits compared to office-based or telephone-based care were being female (adjusted odds ratio [OR] 1.28, 95% confidence interval [CI] 1.21-1.35), being 85 years of age or older (adjusted OR 2.42, 95% CI 1.80-3.26) and living in a rural area (adjusted OR 1.09, 95% CI 1.00-1.18). Increased odds were associated with home care referrals by the patient's primary care physician (adjusted OR 1.49, 95% CI 1.39-1.58) and referrals occurring during a hospital stay (adjusted OR 1.20, 95% CI 1.13-1.28). INTERPRETATION: A small proportion of patients near the end of life received home-based physician care, and patient characteristics did not explain the low visit rates. Future work on system- and provider-level factors may be critical to improve access to home-based end-of-life primary care.
Subject(s)
Home Care Services , Physicians , Adult , Humans , Female , Aged, 80 and over , Male , House Calls , Retrospective Studies , DeathABSTRACT
A disproportionate share of the health impacts of COVID-19 has been borne by older adults, particularly those in long-term care facilities (LTCs). Vaccination has been critical to efforts to combat this issue, but as we begin to emerge from this pandemic, questions remain about how to protect the health of residents of LTC and assisted living facilities proactively in order to prevent such a disaster from occurring again. Vaccination, not just against COVID-19, but also against other vaccine-preventable illness, will be a key component of this effort. However, there are currently substantial gaps in the uptake of vaccines recommended for older adults. Technology offers an opportunity to assist in filling these vaccination gaps. Our experiences in Fredericton, New Brunswick suggest that a digital immunization solution would facilitate better uptake of adult vaccines for older adults in assisted and independent living facilities and would help policy and decision makers to identify coverage gaps and develop interventions to protect these individuals.
Subject(s)
Assisted Living Facilities , COVID-19 , Vaccines , Humans , Aged , Long-Term Care , COVID-19/prevention & control , VaccinationABSTRACT
INTRODUCTION: The number of Canadians 75 years and older is expected to double over the next 20 years, putting continuing care systems such as long-term care (LTC) homes under increasing pressure. Health information technology (IT) has been found to improve the quality, safety and efficiency of care in numerous clinical settings and could help optimise LTC for residents. However, the level of health IT adoption in Ontario's LTC homes is unknown and, as a result, requires an accurate assessment to provide a baseline understanding for future planning. METHODS AND ANALYSIS: We will use a cross-sectional design to investigate the level of IT maturity in Ontario's LTC homes. IT maturity will be assessed with the LTC IT Maturity Instrument, a validated survey examining IT capabilities, the extent of IT use and degree of internal/external IT integration across the domains of resident care, clinical support and administrative activities. All LTC homes in Ontario will be invited to participate. The Director of Care for each home will be directly contacted for recruitment. The survey will be distributed online (or by paper, if preferred) to LTC homes and completed by a staff member designated by the LTC to be knowledgeable about its IT systems. Analyses will consist of descriptive statistics characterising IT maturity across LTC homes and inferential statistics to examine the association between key facility-level characteristics (size, ownership, rurality) and IT maturity. ETHICS AND DISSEMINATION: This study was reviewed by the Ottawa Health Science Network Research Ethics Board and was exempt from full ethics review. Findings will be disseminated through peer-reviewed publication and presentations to the scientific community and stakeholders. Dissemination of our findings will not only inform provincial planning for harnessing the potential of technology in LTC but may also enable quality improvement initiatives in individual LTC homes.
Subject(s)
Information Technology , Long-Term Care , Humans , Cross-Sectional Studies , Ontario , OwnershipABSTRACT
BACKGROUND: Decisions around driving retirement are difficult for older persons living with cognitive decline and their caregivers. In many jurisdictions, physicians are responsible for notifying authorities of driving risks. However, there are no standardized guidelines for this assessment. Having access to a driving risk assessment tool could help older adults and their caregivers prepare for discussions around driving retirement. This study compares the clinical profiles of older adult drivers assessed in an academic memory clinic who were referred to the driving authority to older drivers who were not with a focus on instrumental activities of daily living (iADLs). METHODS: Data on referred (R) and not-referred (NR) drivers were extracted from medical records. Elements from the medical history, cognitive history, functional abilities, Modified Mini-Mental State (3MS) examination, Trails A/B, and clock drawing were included in the analysis. Four risk factors of interest were examined in separate logistic regression analyses, adjusted for demographic variables. RESULTS: 50 participants were identified in each group. The R group was older on average than the NR. As expected, R were more likely to have Trails B scores over 3 min and have significantly abnormal clock drawing tests. R also showed lower 3MS scores and a higher average number of functional impairments (including managing appointments, medications, bills, or the television). CONCLUSION: Beyond standard cognitive tests, impairment in iADLs may help general practitioners identify at-risk drivers in the absence of standardized guidelines and tools. This finding can also inform the design of a risk assessment tool for driving and could help with approaches for drivers with otherwise borderline test results.
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OBJECTIVE: In Canada, a persistent barrier to achieving healthcare system efficiency has been patient days accumulated by individuals with an alternate level of care (ALC) designation. Transitional care units (TCUs) may address the capacity pressures associated with ALC. We sought to assess the cost-effectiveness of a nursing home (NH) based TCU leveraging existing infrastructure to support a hospitalized older adult's transition to independent living at home. METHODS: This case-control study included frail, older adults who received care within a function-focused TCU following a hospitalization between 1 March 2018 and 30 June 2019. TCU patients were propensity score matched to hospitalized ALC patients ("usual care"). The primary outcome was days without requiring institutional care six months following discharge, defined as institutional-free days. This was calculated by excluding all days in hospitals, rehabilitation facilities, complex continuing care facilities and NHs. Using the total direct cost of care up to discharge from TCU or hospital, the incremental cost-effectiveness ratio was calculated. RESULTS: TCU patients spent, on average, 162.0 days institution-free (95% CI: 156.3-167.6d) within six months days post-discharge, while usual care patients spent 140.6 days institution-free (95% CI: 132.3-148.8d). TCU recipients had a lower total cost of care, by CAN$1,106 (95% CI: $-6,129-$10,319), due to the reduced hospital length of stay (mean [SD] 15.6d [13.3d] for TCU patients and 28.6d [67.4d] days for usual care). TCU was deemed the more cost-effective model of care. LIMITATIONS: The main limitation was the potential inclusion of patients not eligible for SAFE in our usual group. To minimize this selection bias, we expanded the geographical pool of ALC patients to patients with SAFE admission potential in other area hospitals. CONCLUSIONS: Through rehabilitative and restorative care, TCUs can reduce hospital length of stay, increase potential for independent living, and reduce risk for subsequent institutionalization.
A persistent barrier to achieving efficiency within the Canadian healthcare system has been days accumulated by patients who no longer require the intensity of hospital care but are waiting to be discharged to more appropriate care settings. Prolonged hospital stays are known to expose patients to various health risks.Transitional care units are care settings designed to improve care continuation for patients moving between different locations or levels of care. They an opportunity to address the capacity pressures and health risks associated with prolonged hospital stays.Studies have demonstrated the effectiveness of transitional care units to improve outcomes among older adults, such as reducing hospital length of stay, nursing home placement, and falls, as well as improving functional status, quality of life, and likelihood of being discharged home. However, the financial implications of transitional care units, in terms of resources required to operate their services, and value for money are not well understood.This study found that a nursing home-based, function-focused transitional care unit reduced the length of stay in hospitals and the risk for subsequent institutionalization among frail, older adults. This was achieved at a lower total cost of care. Older adults who received transitional care were able to remain at home for three weeks longer without requiring institutional care compared to those who did not receive transitional care. Considering the growing investments in transitional care, this research provides evidence supporting nursing home-based transitional care programs.
Subject(s)
Patient Discharge , Transitional Care , Humans , Aged , Independent Living , Cost-Benefit Analysis , Case-Control Studies , Aftercare , Nursing HomesABSTRACT
BACKGROUND: Few studies have described the settings cancer decedents spend their end-of-life stage, with none considering homecare specifically. We describe the different settings of care experienced in the last 100 days of life by individuals with cancer and how settings of care change as they approached death. METHODS: A retrospective cohort study from January 2013 to December 2017, of decedents whose primary cause of death was cancer, using linked population-level health administrative datasets in Ontario, Canada. RESULTS: Decedents 125,755 were included in our cohort. The average age at death was 73, 46% were female, and 14% resided in rural regions. And 24% died of lung cancer, 7% breast, 7% colorectal, 7% pancreatic, 5% prostate, and 50% other cancers. In the last 100 days of life, decedents spent 25.9 days in institutions, 25.8 days receiving care in the community, and 48.3 days at home without any care. Individuals who died of lung and pancreatic cancers spent the most days at home without any care (52.1 and 52.6 days), while individuals who died of prostate and breast cancer spent the least days at home without any care (41.6 and 45.1 days). Regardless of cancer type, decedents spent fewer days at home and more days in institutions as they approached death, despite established patient preferences for an end-of-life experience at home. CONCLUSIONS: In the last 100 days of life, cancer decedents spent most of their time in either institutions or at home without any care. Improving homecare services during the end-of-life may provide people dying of cancer with a preferred dying experience.
Subject(s)
Lung Neoplasms , Terminal Care , Male , Humans , Female , Retrospective Studies , Ontario/epidemiology , DeathABSTRACT
The increasing complexity of residents' needs, emphasis on social distancing and limited access to high-quality support presented challenges to patient-centred care during the pandemic. Yet the pandemic created an opportunity to explore novel approaches to achieving person-centred care within long-term care (LTC). We share three projects designed to enhance care delivery in the context of the pandemic: to address personhood needs during outbreaks, to improve the quality of medical care and to deliver personalized palliative and end-of-life care using a prediction algorithm. These projects enabled better care during the pandemic and will continue to advance person-centred care beyond the pandemic.
Subject(s)
COVID-19 , Terminal Care , Humans , Aged , Long-Term Care , Pandemics , COVID-19/epidemiology , Patient-Centered CareABSTRACT
BACKGROUND: We describe the association between initial treatment and end-of-life (EOL) outcomes among patients with pancreatic ductal adenocarcinoma (PDAC). METHODS: This population-based cohort study included patients with PDAC who died from April 2010-December 2017 in Ontario, Canada using administrative databases. We used multivariable models to explore the association between index cancer treatment (no cancer-directed therapy, radiation, chemotherapy, surgery alone, and surgery and chemotherapy), and primary (mortality, healthcare encounters and palliative care) and secondary outcomes (location of death, hospitalizations, and receipt of chemotherapy within the last 30 days of life). RESULTS: In our cohort (N = 9950), 56% received no cancer-directed therapy, 5% underwent radiation, 27% underwent chemotherapy, 7% underwent surgery alone, and 6% underwent surgery and chemotherapy. Compared to no cancer-directed therapy, radiation therapy (HR = 0.63), chemotherapy (HR = 0.43) surgery alone (HR = 0.32), and surgery and chemotherapy (HR = 0.23) were all associated with decreased mortality. Radiation (AMD = - 3.64), chemotherapy (AMD = -6.35), surgery alone (AMD = -6.91), and surgery and chemotherapy (AMD = -6.74) were all associated with fewer healthcare encounters per 30 days in the last 6 months of life. Chemotherapy (AMD = -1.57), surgery alone (AMD = -1.65), and surgery and chemotherapy (AMD = -1.67) were associated with fewer palliative care visits (all p-values for estimates above < 0.05). Treatment groups were associated with lower odds of institutional death and hospitalization at EOL, and higher odds of chemotherapy at EOL. CONCLUSIONS: Receiving cancer-directed therapies was associated with higher survival, fewer healthcare visits, lower odds of dying in an institution and hospitalization at EOL, fewer palliative care visits, and higher odds of receiving chemotherapy at EOL.
Subject(s)
Pancreatic Neoplasms , Terminal Care , Humans , Cohort Studies , Palliative Care , Pancreatic Neoplasms/therapy , Death , Ontario/epidemiology , Retrospective Studies , Pancreatic NeoplasmsABSTRACT
BACKGROUND: The mix of care provided by family physicians, specialists and palliative care physicians can vary by the illnesses leading to death, which may result in disruptions of continuity of care at the end of life. We measured continuity of outpatient physician care in the last year of life across differing causes of death and assessed factors associated with higher continuity. METHODS: We conducted a retrospective descriptive study of adults who died in Ontario between 2013 and 2018, using linked provincial health administrative data. We calculated 3 measures of continuity (usual provider, Bice-Boxerman and sequential continuity), which range from 0 to 1, from outpatient physician visits over the last year of life for terminal illness, organ failure, frailty, sudden death and other causes of death. We used multivariable logistic regression models to evaluate associations between characteristics and a continuity score of 0.5 or greater. RESULTS: Among the 417 628 decedents, we found that mean usual provider, Bice-Boxerman and sequential continuity indices were 0.37, 0.30 and 0.37, respectively, with continuity being the lowest for those with terminal illness (0.27, 0.23 and 0.33, respectively). Higher number of comorbidities, higher neighbourhood income quintile and all non-sudden death categories were associated with lower continuity. INTERPRETATION: We found that continuity of physician care in the last year of life was low, especially in those with cancer. Further research is needed to validate measures of continuity against end-of-life health care outcomes.
Subject(s)
Neoplasms , Terminal Care , Adult , Humans , Retrospective Studies , Hospitalization , Physicians, Family , Neoplasms/epidemiology , Neoplasms/therapyABSTRACT
INTRODUCTION: Following a cancer diagnosis, patients and their caregivers face crucial decisions regarding goals of care and treatment, which have consequences that can persist throughout their cancer journey. To foster informed and value-driven treatment choices, evidence-based information on outcomes relevant to patients is needed. Traditionally, clinical studies have largely focused on a few concrete and easily measurable outcomes such as survival, disease progression and immediate treatment toxicities. These outcomes do not capture other important factors that patients consider when making treatment decisions. Patient-centred outcomes (PCOs) reflect the patients' individual values, preferences, needs and circumstances that are essential to directing meaningful and informed healthcare discussions. Often, however, these outcomes are not included in research protocols in a standardised and practical fashion. This scoping review will summarise the existing literature on PCOs in gastrointestinal (GI) cancer care as well as the tools used to assess these outcomes. A comprehensive list of these PCOs will be generated for future efforts to develop a core outcome set. METHODS AND ANALYSIS: This scoping review will follow Arksey and O'Malley's expanded framework for scoping reviews. We will systematically search Medline, Embase, CINAHL, Cochrane Library and APA PsycINFO databases for studies examining PCOs in the context of GI cancer. We will include studies published in or after the year 2000 up to the date of the final searches, with no language restrictions. Studies involving adult patients with GI cancers and discussion of any PCOs will be included. Opinion pieces, protocols, case reports and abstracts will be excluded. Two authors will independently perform two rounds of screening to select studies for inclusion. The data from full texts will be extracted, charted and summarised both quantitatively and qualitatively. ETHICS AND DISSEMINATION: No ethics approval is required for this scoping review. Results will be disseminated through scientific publication and presentation at relevant conferences.