In this large outpatient cancer population, trajectories of mean ESAS scores followed two patterns: increasing versus generally flat. The latter was perhaps due to available treatment (eg, prescriptions) for those symptoms. Future research should prioritize addressing symptoms that worsen over time.
Objective To determine the pooled effect of exposure to one of 11 specialist palliative care teams providing services in patients' homes.Design Pooled analysis of a retrospective cohort study.Setting Ontario, Canada.Participants 3109 patients who received care from specialist palliative care teams in 2009-11 (exposed) matched by propensity score to 3109 patients who received usual care (unexposed). InterventionThe palliative care teams studied served different geographies and varied in team composition and size but had the same core team members and role: a core group of palliative care physicians, nurses, and family physicians who provide integrated palliative care to patients in their homes. The teams' role was to manage symptoms, provide education and care, coordinate services, and be available without interruption regardless of time or day.Main outcome measures Patients (a) being in hospital in the last two weeks of life; (b) having an emergency department visit in the last two weeks of life; or (c) dying in hospital.Results In both exposed and unexposed groups, about 80% had cancer and 78% received end of life homecare services for the same average duration. Across all palliative care teams, 970 (31.2%) of the exposed group were in hospital and 896 (28.9%) had an emergency department visit in the last two weeks of life respectively, compared with 1219 (39.3%) and 1070 (34.5%) of the unexposed group (P<0.001). The pooled relative risks of being in hospital and having an emergency department visit in late life comparing exposed versus unexposed were 0.68 (95% confidence interval 0.61 to 0.76) and 0.77 (0.69 to 0.86) respectively. Fewer exposed than unexposed patients died in hospital (503 (16.2%) v 887 (28.6%), P<0.001), and the pooled relative risk of dying in hospital was 0.46 (0.40 to 0.52).Conclusions Community based specialist palliative care teams, despite variation in team composition and geographies, were effective at reducing acute care use and hospital deaths at the end of life. IntroductionHome based palliative care teams are meant to help patients manage symptoms, improve quality of life, and prevent avoidable hospitalisations, which are documented issues at end of life.1-3 Moreover, policy makers internationally want to deliver integrated palliative care in the home and community, since many patients prefer to be cared for at home, community care is often less expensive than hospital care, and acute care hospitals are overwhelmed.4 5 However, policy makers are unsure of optimal models of care delivery based on interdisciplinary teams. Although studies have evaluated specialist palliative care teams in hospitals, 6-8 only nine randomised controlled trials specifically investigated specialist teams in the community. [9][10][11][12][13][14][15][16][17] The community based teams studied in these trials involved a core group of interdisciplinary team members, specifically palliative care physicians, nurses, and family physicians who provide integrated palliative care to patients in their homes...
BACKGROUND. For ambulatory cancer patients, Ontario has standardized symptom and performance status assessment population-wide, using the Edmonton Symptom Assessment System (ESAS) and Palliative Performance Scale (PPS). In a broad cross-section of cancer outpatients, the authors describe the ESAS and PPS scores and their relation to patient characteristics. METHODS. This is a descriptive study using administrative healthcare data. RESULTS. The cohort included 45,118 and 23,802 patients' first ESAS and PPS, respectively. Fatigue was most prevalent (75%), and nausea least prevalent (25%) in the cohort. More than half of patients reported pain or shortness of breath; about half of those reported moderate to severe scores. Seventy-eight percent had stable performance status scores. On multivariate analysis, worse ESAS outcomes were consistently seen for women, those with comorbidity, and those with shorter survivals from assessment. Lung cancer patients had the worst burden of symptoms. CONCLUSIONS. This is the first study to report ESAS and PPS scores in a large, geographically based cohort with a full scope of cancer diagnoses, including patients seen earlier in the cancer trajectory (ie, treated for cure). In this ambulatory cancer population, the high prevalence of numerous symptoms parallels those reported in palliative populations and represents a target for improved clinical care. Differences in outcomes for subgroups require further investigation. This research sets the groundwork for future research on patient and provider outcomes using linked administrative healthcare data. Cancer 2010;116:5767-76.
Family caregivers of patients enrolled in home-based palliative care programmes provide unpaid care and assistance with daily activities to terminally ill family members. Caregivers often experience caregiver burden, which is an important predictor of anxiety and depression that can extend into bereavement. We conducted a longitudinal, prospective cohort study to comprehensively assess modifiable and non-modifiable patient and caregiver factors that account for caregiver burden over the palliative care trajectory. Caregivers (n = 327) of patients with malignant neoplasm were recruited from two dedicated home-based palliative care programmes in Southern Ontario, Canada from 1 July 2010 to 31 August 2012. Data were obtained from bi-weekly telephone interviews with caregivers from study admission until death, and from palliative care programme and home-care agency databases. Information collected comprised patient and caregiver demographics, utilisation of privately and publicly financed resources, patient clinical status and caregiver burden. The average age of the caregivers was 59.0 years (SD: 13.2), and almost 70% were female. Caregiver burden increased over time in a non-linear fashion from study admission to patient death. Increased monthly unpaid care-giving time costs, monthly public personal support worker costs, emergency department visits and low patient functional status were associated with higher caregiver burden. Greater use of hospice care was associated with lower burden. Female caregivers tended to report more burden compared to men as death approached, and burden was higher when patients were male. Low patient functional status was the strongest predictor of burden. Understanding the influence of modifiable and non-modifiable factors on the experience of burden over the palliative trajectory is essential for the development and targeting of programmes and policies to support family caregivers and reduce burden. Supporting caregivers can have benefits such as improved caregiver health outcomes, and enhancing their ability to meet care-giving demands, thereby potentially allowing for longer patient care in the home setting.
Many cancer patients die in institutional settings despite their preference to die at home. A longitudinal, prospective cohort study was conducted to comprehensively assess the determinants of home death for patients receiving home-based palliative care. Data collected from biweekly telephone interviews with caregivers (n = 302) and program databases were entered into a multivariate logistic model. Patients with high nursing costs (odds ratio [OR]: 4.3; confidence interval [CI]: 1.8-10.2) and patients with high personal support worker costs (OR: 2.3; CI: 1.1-4.5) were more likely to die at home than those with low costs. Patients who lived alone were less likely to die at home than those who cohabitated (OR: 0.4; CI: 0.2-0.8), and those with a high propensity for a home-death preference were more likely to die at home than those with a low propensity (OR: 5.8; CI: 1.1-31.3). An understanding of the predictors of place of death may contribute to the development of effective interventions that support home death.
The overall quality of death was rated positively for the majority of these cancer patients. Ratings were highest for home deaths perhaps because they are associated with fewer complications and/or a more extensive support network. For a substantial minority, symptom control and death-related distress at the end of life were problematic, highlighting areas for intervention.
Physicians described relationship, financial, and workload challenges to providing MAiD. We provide several recommendations to address these challenges and help ensure the sustainability of MAiD in countries that provide this service.
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