Integrated palliative homecare in advanced dementia: reduced healthcare utilisation and costs.

OBJECTIVES: To determine the economic benefit of an integrated home-based palliative care programme for advanced dementia (Programme Dignity), evaluation is required. This study aimed to estimate Programme Dignity's average monthly cost from a provider's perspective; and compare healthcare utilisation and costs of programme patients with controls, accounting for enrolment duration. METHODS: This was a retrospective cohort study. Home-dwelling patients with advanced dementia (stage 7 on the functional assessment staging in Alzheimer's disease) with a history of pneumonia, albumin <35 g/L or tube-feeding and known to be deceased were analysed (Programme Dignity=184, controls=139). One-year programme operational costs were apportioned on a per patient-month basis. Cumulative healthcare utilisation and costs were examined at 1, 3 and 6 months look-back from death. Between-group comparisons used Poisson, zero-inflated Poisson regressions and generalised linear models. RESULTS: The average monthly programme cost was SGD$1311 (SGD-Pounds exchange rate: 0.481) per patient. Fully enrolled programme patients were less likely to visit the emergency department (incidence rate ratios (IRRs): 1 month=0.56; 3 months=0.19; 6 months=0.10; all p<0.001), be admitted to hospital (IRRs: 1 month=0.60; 3 months=0.19; 6 months=0.15; all p<0.001), had a lower cumulative length of stay (IRRs: 1 month=0.78; 3 months=0.49; 6 months=0.24; all p<0.001) and incurred lesser healthcare utilisation costs (ß-coefficients: 1 month=0.70; 3 months=0.40; 6 months=0.43; all p<0.01) at all time-points examined. CONCLUSION: Programme Dignity for advanced dementia reduces healthcare utilisation and costs. If scalable, it may benefit more patients wishing to remain at home at the end-of-life, allowing for a potentially sustainable care model to cope with rapid population ageing. It contributes to the evidence base of advanced dementia palliative care and informs healthcare policy making. Future studies should estimate informal caregiving costs for comprehensive economic evaluation.

Protocol for a randomised controlled trial on impact of comprehensive geriatric and supportive assessment versus standard care in older adults with cancer undergoing curative treatment: The Geriatric Oncology SuPportive clinic for ELderly (GOSPEL) study.

Cancer affects older adults with varying levels of frailty, but cancer treatment is extrapolated from clinical trials involving predominantly young and robust subjects. Recent geriatric oncology randomised controlled trials (RCT) report that geriatric assessment leading to frailty-guided intervention reduces treatment-related toxicity whilst maintaining survival and improving quality of life (QoL). However, these positive results have not have been consistently reported in the literature. We postulate that the impact of geriatric interventions has been underestimated in these studies with the inclusion of subjects receiving palliative-intent chemotherapy in whom dose reduction is common. Integrating supportive care with current geriatric oncology models may improve the QoL of older adults undergoing treatment. However, no studies as yet have examined such integrated geriatric and supportive models of care. The Geriatric Oncology SuPportive clinic for Elderly (GOSPEL) study is a single-centre, open-label, analyst-blinded RCT evaluating the impact of comprehensive geriatric and supportive care on QoL of older adults with cancer undergoing curative treatment. Older adults aged above 65, with a Geriatric-8 score ≤ 14, with plans for high dose radiotherapy and/or curative chemotherapy will be recruited. The primary QoL outcome is measured using the European Organisation for Research and Treatment of Cancer (EORTC) QLQ-ELD14 mobility scale at 12 weeks. Secondary outcomes include overall and disease-free survival, treatment-related adverse events, and hospital admissions. We pre-powered this study to recruit 200 subjects based on the minimally clinically important difference for EORTC QLQ-ELD14 to achieve 80% statistical power (alpha 0.05), assuming 25% attrition. Outcomes will be analysed using intention-to-treat. Intervention consists of multi-domain comprehensive geriatric and supportive care assessments from a multidisciplinary team targeting unmet needs. These include functional decline, falls, incontinence, cognitive impairment, multi-morbidity, polypharmacy, and symptom relief, as well as social and psycho-spiritual concerns. Standard care entails routine oncological management with referral to geriatrics based on the discretion of the primary oncologist. Recruitment has been ongoing since August 2020. Results from the GOSPEL study will increase understanding of the impact of integrated geriatric and supportive care programs in older adults with cancer receiving curative treatment. Trial registration: This study is registered under ClinicalTrials.gov (ID NCT04513977).

Factors Associated With Family Caregiver Burden of Home-Dwelling Patients With Advanced Dementia.

OBJECTIVES: To realize patients' preferences for home death, this study aimed to identify factors associated with family caregiver burden of home-dwelling patients with advanced dementia and examine its relationship with end-of-life care treatment decisions. DESIGN: A prospective cohort study. SETTING AND PARTICIPANTS: Patient-family caregiver dyads enrolled in a home-based palliative care program for patients with advanced dementia, with family caregiver burden assessed using the Zarit Burden Interview (ZBI) on enrolment, were included. METHODS: Independent variables included sociodemographic data, patients' clinical phase, symptom severity, quality of life, informal paid help availability, and community resources utilized. Dependent variable was continuous ZBI scores and ZBI scores dichotomized into <24 and ≥24 for predicting depression risk. Place of death and interventions received 2 weeks before death were also collected. Data were analyzed using multivariate linear and logistic regression. RESULTS: From October 2014 to December 2020, a total of 377 family caregivers were assessed with ZBI. Median score was 25 (IQR 15-36), and 54.4% of them were at risk of depression. Younger family caregivers had higher ZBI scores (ß = -0.22, 95% CI -0.38, -0.07), with the depression risk doubling for family caregivers aged <60 years (OR 2.13, 95% CI 1.33, 3.43). Absence of informal paid help also increased the ZBI scores (ß = -9.04, 95% CI -14.86, -3.22) and depression risk (OR 2.50, 95% CI 1.03, 6.09). In addition, caregivers' ZBI scores increased with patients' neuropsychiatric symptom severity (ß = 0.49, 95% CI 0.08, 0.89), and caregivers of clinically unstable patients had a higher depression risk (OR 1.80, 95% CI 1.03, 3.12). Baseline caregiver burden was not associated with treatment decisions made at the end of life. CONCLUSIONS AND IMPLICATIONS: Younger family caregivers caring for clinically unstable patients with severe neuropsychiatric symptoms experienced greater burden without informal paid help. For end-of-life care at home in advanced dementia to be tenable, relevant national agencies and stakeholders are recommended to work collectively to support family caregivers holistically.

Predictors of the final place of care of patients with advanced cancer receiving integrated home-based palliative care: a retrospective cohort study.

BACKGROUND: Meeting patients' preferences for place of care at the end-of-life is an indicator of quality palliative care. Understanding the key elements required for terminal care within an integrated model may inform policy and practice, and consequently increase the likelihood of meeting patients' preferences. Hence, this study aimed to identify factors associated with the final place of care in patients with advanced cancer receiving integrated, home-based palliative care. METHODS: This retrospective cohort study included deceased adult patients with advanced cancer who were enrolled in the home-based palliative care service between January 2016 and December 2018. Patients with < 2 weeks' enrollment in the home-based service, or ≤ 1-week duration at the final place of care, were excluded. The following information were retrieved from patients' electronic medical records: patients' and their families' characteristics, care preferences, healthcare utilization, functional status (measured by the Palliative Performance Scale (PPSv2)), and symptom severity (measured by the Edmonton Symptom Assessment System). Multivariate logistic regression was employed to identify independent predictors of the final place of care. Kappa value was calculated to estimate the concordance between actual and preferred place of death. RESULTS: A total of 359 patients were included in the study. Home was the most common (58.2%) final place of care, followed by inpatient hospice (23.7%), and hospital (16.7%). Patients who were single or divorced (OR: 5.5; 95% CI: 1.1-27.8), or had older family caregivers (OR: 3.1; 95% CI: 1.1-8.8), PPSv2 score ≥ 40% (OR: 9.1; 95% CI: 3.3-24.8), pain score ≥ 2 (OR: 3.6; 95% CI: 1.3-9.8), and non-home death preference (OR: 23.8; 95% CI: 5.4-105.1), were more likely to receive terminal care in the inpatient hospice. Patients who were male (OR: 3.2; 95% CI: 1.0-9.9), or had PPSv2 score ≥ 40% (OR: 8.6; 95% CI: 2.9-26.0), pain score ≥ 2 (OR: 3.5; 95% CI: 1.2-10.3), and non-home death preference (OR: 9.8; 95% CI: 2.1-46.3), were more likely to be hospitalized. Goal-concordance was fair (72.6%, kappa = 0.39). CONCLUSIONS: Higher functional status, greater pain intensity, and non-home death preference predicted institutionalization as the final place of care. Additionally, single or divorced patients with older family caregivers were more likely to receive terminal care in the inpatient hospice, while males were more likely to be hospitalized. Despite being part of an integrated care model, goal-concordance was sub-optimal. More comprehensive community networks and resources, enhanced pain control, and personalized care planning discussions, are recommended to better meet patients' preferences for their final place of care. Future research could similarly examine factors associated with the final place of care in patients with advanced non-cancer conditions.

Burnout and Resilience After a Decade in Palliative Care: What Survivors Have to Teach Us. A Qualitative Study of Palliative Care Clinicians With More Than 10 Years of Experience.

CONTEXT: Burnout is common among palliative care clinicians (PCCs). Resilience helps to reduce burnout, compassion fatigue, and is associated with longevity in palliative care. OBJECTIVES: We aimed to study PCCs who have remained in the field for longer than 10 years to deepen our understanding on their views on burnout and resilience. METHODS: We conducted a qualitative study using semistructured interviews and purposive sampling on 18 PCCs - five doctors, 10 nurses, and three social workers who worked in various palliative care settings (hospital palliative care team, home hospice, and inpatient hospice). The mean age of the interviewees was 52 years, and the mean number of years practicing palliative care was 15.7 years (range 10-25). The interviews were recorded verbatim, transcribed, and analyzed using a grounded theory approach. RESULTS: Four major themes emerged from our analysis - struggling, changing mindset, adapting, and resilience. Intervening conditions, such as self-awareness, reflection, and evolution, were also important factors. The core phenomenon of our study was that of transformational growth - a process that PCCs have to go through before they achieve resilience. We also further classified resilience into both personal and collective resilience. CONCLUSION: Our findings highlight the evolving process of transformational growth that PCCs must repeatedly undergo as they strive toward sustained resilience and longevity. It also stresses the importance of taking individual and collective responsibility toward building a culture of personal and team resilience.

Comfort and Satisfaction With Care of Home-Dwelling Dementia Patients at the End of Life.

CONTEXT: Despite the preference to pass away at home, many dementia patients die in institutions, resulting in a paucity of studies examining end-of-life care outcomes in the home setting. OBJECTIVE: The objective of this study was to identify modifiable factors associated with the comfort of dementia patients dying at home and families' satisfaction with care. METHODS: This is a prospective cohort study conducted from October 2014 to April 2019 in Singapore. Dementia patients at Stage 7 on the Functional Assessment Staging Scale, with albumin <35 g/L, enteral feeding, or pneumonia, were recruited from a palliative homecare program. Independent variables included demographics, medical information, and care preferences. The Comfort Assessment in Dying with Dementia scale assessed dying patients' comfort, whereas the Satisfaction with Care at the End-of-Life in Dementia scale evaluated family caregivers' satisfaction two months after bereavement. Gamma regression identified factors independently associated with comfort and satisfaction. RESULTS: The median age of 202 deceased patients whose comfort was assessed was 88 years. Anti-cholinergic prescription (60.4% of patients) [ß (95% CI) = 1.823 (0.660-2.986), P = 0.002] was positively associated with comfort, whereas opioid prescription (89.6%) [ß (95% CI) = -2.179 (-4.107 to -0.251), P = 0.027] and >1 antibiotic courses used in the last two weeks of life (77.2%) [ß (95% CI) = -1.968 (-3.196 to -0.740), P = 0.002] were negatively associated. Independent factors associated with families' satisfaction with care were comfort [ß (95% CI) = 0.149 (0.012-0.286), P = 0.033] and honoring of medical intervention preferences (96.0%) [ß (95% CI) = 3.969 (1.485-6.453), P = 0.002]. CONCLUSION: Achieving comfort and satisfaction with care for dementia patients dying at home involves an interplay of modifiable factors. Honoring medical intervention preferences, such as those with palliative intent associated with patients' comfort, determined families' satisfaction with care.

ED-PALS: A Comprehensive Palliative Care Service for Oncology Patients in the Emergency Department.

BACKGROUND: The American College of Emergency Physicians has identified early palliative care referral for patients with advanced cancer as a key competent of the Choosing Wisely campaign. OBJECTIVES: To study the feasibility of a new 3-way model of care between emergency department (ED), hospital palliative care department, and inpatient/home hospice. METHODS: This was a prospective, descriptive study that included oncology patients who attended the hospital ED over a 3-year period from January 2015 to December 2017. The inclusion criteria were as follows: (1) presence of metastatic cancer with either; (2) any 1 of the following symptoms: pain, dyspnea, nausea and vomiting, delirium, or swelling; or (3) potential care difficulties (requiring home hospice care or inpatient hospice). RESULTS: A total of 340 patients were referred from the ED. Mean age was 72 years, 59% were males and 41% females, and the majority (88%) were Chinese. The most common cancers were lung 89 (26%), colorectal 71 (21%), and hepatobiliary cancer 49 (14%). The most common symptoms on Edmonton Symptom Assessment Scale scoring were pain (34%), poor appetite (31%), and dyspnea (26%). CONCLUSIONS: This tripartite model of palliative care, hospice, and ED collaboration allows earlier access to palliative care in the ED and direct admissions to the palliative care unit and comfort care rooms. The ED patients who did not need admission were also attended to in the palliative care "Hot Clinics" within a week with home hospice help. Patients who required inpatient hospice care were directly admitted there from the ED.

Graves' disease associated with spasmodic truncal flexion.

A 40-year-old Chinese man was admitted with 1-2 Hz spasmodic truncal flexion resembling myoclonus. He was known to be thyrotoxic, and had defaulted antithyroid therapy. Clinical examination revealed truncal flexion from contraction of the rectus abdominis, with no involvement of limbs or face and no jerking in sleep. He was biochemically thyrotoxic. Treatment with clonazepam and propylthiouracil resulted in resolution of the myoclonic jerks within the next 3 weeks. He stopped taking clonazepam within the next 3 months with no recurrence of myoclonus. He remained well until he stopped taking his antithyroid medications 9 months later, when he developed spasmodic truncal jerking again. Biochemical tests confirmed that he was hyperthyroid at this time. These movements ceased within a month of compliance with antithyroid therapy, and he has been well since. MRI of the brain and thoracic spine were unremarkable. Thyrotoxicosis is known to cause chorea and tremors, and has rarely been described in association with myoclonus.