Temporal trends in place of death for end-of-life patients: Evidence from Toronto, Canada.

Understanding the temporal trends in the place of death among patients in receipt of home-based palliative care can help direct health policies and planning of health resources. This paper aims to assess the temporal trends in place of death and its determinants over the past decade for patients receiving home-based palliative care. This paper also examines the impact of early referral to home-based palliative care services on patient's place of death. Survey data collected in a home-based end-of-life care program in Toronto, Canada from 2005 to 2015 were analysed using a multivariate logistic model. The results suggest that the place of death for patients in receipt of home-based palliative care has changed over time, with more patients dying at home over 2006-2015 when compared to 2005. Also, early referral to home-based palliative care services may not increase a patient's likelihood of home death. Understanding the temporal shifts of place of death and the associated factors is essential for effective improvements in home-based palliative care programs and the development of end-of-life care policies.

Examination of psychological risk factors for chronic pain following cardiac surgery: protocol for a prospective observational study.

INTRODUCTION: Approximately 400 000 Americans and 36 000 Canadians undergo cardiac surgery annually, and up to 56% will develop chronic postsurgical pain (CPSP). The primary aim of this study is to explore the association of pain-related beliefs and gender-based pain expectations on the development of CPSP. Secondary goals are to: (A) explore risk factors for poor functional status and patient-level cost of illness from a societal perspective up to 12 months following cardiac surgery; and (B) determine the impact of CPSP on quality-adjusted life years (QALYs) borne by cardiac surgery, in addition to the incremental cost for one additional QALY gained, among those who develop CPSP compared with those who do not. METHODS AND ANALYSES: In this prospective cohort study, 1250 adults undergoing cardiac surgery, including coronary artery bypass grafting and open-heart procedures, will be recruited over a 3-year period. Putative risk factors for CPSP will be captured prior to surgery, at postoperative day 3 (in hospital) and day 30 (at home). Outcome data will be collected via telephone interview at 6-month and 12-month follow-up. We will employ generalised estimating equations to model the primary (CPSP) and secondary outcomes (function and cost) while adjusting for prespecified model covariates. QALYs will be estimated by converting data from the Short Form-12 (version 2) to a utility score. ETHICS AND DISSEMINATION: This protocol has been approved by the responsible bodies at each of the hospital sites, and study enrolment began May 2015. We will disseminate our results through CardiacPain.Net, a web-based knowledge dissemination platform, presentation at international conferences and publications in scientific journals. TRIAL REGISTRATION NUMBER: NCT01842568.

Does informal care impact utilisation of home-based formal care services among end-of-life patients? A decade of evidence from Ontario, Canada.

Understanding how informal care impacts formal care utilisation for home-based end-of-life patients is an important policy- and practice-relevant question. This paper aims to assess the relationship between informal and formal home care among home-based end-of-life patients and how this relationship has changed over the last decade and over the end-of-life trajectory. We focus on informal care provided by family members or friends, and three types of home-based formal care services: care by personal support workers, physician visits, and nurse visits. Using survey data collected in a home-based end-of-life care programme in Ontario, Canada from 2005 to 2016, we build a two-part utilisation model analysing both the propensity to use each type of formal care and the amount of formal care received by patients. The results suggest that informal care is a substitute for care by personal support workers, but a complement to physician visits and nurse visits. In the case of nurse visits, an increased complementary effect is observed in more recent years. For home-based physician and nurse visits, the complementary effect grows with patient's proximity to death. These results highlight the complexity of the relationship between informal and formal care among home-based end-of-life patients. Decision-makers need to take into account the relationship between informal care and different types of formal services when introducing future policies.

Correlation of Palliative Performance Scale and Survival in Patients With Cancer Receiving Home-Based Palliative Care.

The main objective of this study was to examine whether and how the Palliative Performance Scale (PPS), a measure of a patient's function, was predictive of survival time for those in receipt of home-based palliative care. This was a prospective study, which included 194 cancer patients from November 17, 2013, to August 18, 2015. Data were collected from biweekly telephone interviews with caregivers. Kaplan-Meier survival curves were estimated to assess how survival time was correlated with initial PPS scores after admission to the home-based palliative care program. A multivariate extended Cox regression model was used to examine the association between PPS and survival. The results showed that patients with higher PPS scores, that is, better function, had a lower hazard ratio (0.977; 95% confidence interval: 0.965-0.989) and hence longer survival times. The PPS can be used in predicting survival time for home-based palliative care patients.

Socioeconomic Differences in and Predictors of Home-Based Palliative Care Health Service Use in Ontario, Canada.

The use of health services may vary across people with different socioeconomic statuses, and may be determined by many factors. The purposes of this study were (i) to examine the socioeconomic differences in the propensity and intensity of use for three main home-based health services, that is, home-based palliative care physician visits, nurse visits and personal support worker (PSW) hours; and (ii) to explore the determinants of the use of home-based palliative care services. A prospective cohort study was employed. A total of 181 caregivers were interviewed biweekly over the course of the palliative care trajectory, yielding a total of 994 interviews. The propensity and intensity of health service use were examined using logistic regression and negative binomial regression, respectively. The results demonstrated that both the propensity and intensity of home-based nurse and PSW visits fell with socioeconomic status. The use of home-based palliative care services was not concentrated in high socioeconomic status groups. The common predictors of health service use in the three service categories were patient age, the Palliative Performance Scale (PPS) score and place of death. These findings may assist health service planners in the appropriate allocation of resources and service packages to meet the complex needs of palliative care populations.

Utilisation of home-based physician, nurse and personal support worker services within a palliative care programme in Ontario, Canada: trends over 2005-2015.

With health system restructuring in Canada and a general preference by care recipients and their families to receive palliative care at home, attention to home-based palliative care continues to increase. A multidisciplinary team of health professionals is the most common delivery model for home-based palliative care in Canada. However, little is known about the changing temporal trends in the propensity and intensity of home-based palliative care. The purpose of this study was to assess the propensity to use home-based palliative care services, and once used, the intensity of that use for three main service categories: physician visits, nurse visits and care by personal support workers (PSWs) over the last decade. Three prospective cohort data sets were used to track changes in service use over the period 2005 to 2015. Service use for each category was assessed using a two-part model, and a Heckit regression was performed to assess the presence of selectivity bias. Service propensity was modelled using multivariate logistic regression analysis and service intensity was modelled using log-transformed ordinary least squares regression analysis. Both the propensity and intensity to use home-based physician visits and PSWs increased over the last decade, while service propensity and the intensity of nurse visits decreased. Meanwhile, there was a general tendency for service propensity and intensity to increase as the end of life approached. These findings demonstrate temporal changes towards increased use of home-based palliative care, and a shift to substitute care away from nursing to less expensive forms of care, specifically PSWs. These findings may provide a general idea of the types of services that are used more intensely and require more resources from multidisciplinary teams, as increased use of home-based palliative care has placed dramatic pressures on the budgets of local home and community care organisations.

Validity of the Child Facial Coding System for the Assessment of Acute Pain in Children With Cerebral Palsy.

The purpose of the current study was to examine the concurrent and discriminant validity of the Child Facial Coding System for children with cerebral palsy. Eighty-five children (mean = 8.35 years, SD = 4.72 years) were videotaped during a passive joint stretch with their physiotherapist and during 3 time segments: baseline, passive joint stretch, and recovery. Children's pain responses were rated from videotape using the Numerical Rating Scale and Child Facial Coding System. Results indicated that Child Facial Coding System scores during the passive joint stretch significantly correlated with Numerical Rating Scale scores (r = .72, P < .01). Child Facial Coding System scores were also significantly higher during the passive joint stretch than the baseline and recovery segments (P < .001). Facial activity was not significantly correlated with the developmental measures. These findings suggest that the Child Facial Coding System is a valid method of identifying pain in children with cerebral palsy.

Societal costs of home and hospital end-of-life care for palliative care patients in Ontario, Canada.

In Canada, health system restructuring has led to a greater focus on home-based palliative care as an alternative to institutionalised palliative care. However, little is known about the effect of this change on end-of-life care costs and the extent to which the financial burden of care has shifted from the acute care public sector to families. The purpose of this study was to assess the societal costs of end-of-life care associated with two places of death (hospital and home) using a prospective cohort design in a home-based palliative care programme. Societal cost includes all costs incurred during the course of palliative care irrespective of payer (e.g. health system, out-of-pocket, informal care-giving costs, etc.). Primary caregivers of terminal cancer patients were recruited from the Temmy Latner Centre for Palliative Care in Toronto, Canada. Demographic, service utilisation, care-giving time, health and functional status, and death data were collected by telephone interviews with primary caregivers over the course of patients' palliative trajectory. Logistic regression was conducted to model an individual's propensity for home death. Total societal costs of end-of-life care and component costs were compared between home and hospital death using propensity score stratification. Costs were presented in 2012 Canadian dollars ($1.00 CDN = $1.00 USD). The estimated total societal cost of end-of-life care was $34,197.73 per patient over the entire palliative trajectory (4 months on average). Results showed no significant difference (P > 0.05) in total societal costs between home and hospital death patients. Higher hospitalisation costs for hospital death patients were replaced by higher unpaid caregiver time and outpatient service costs for home death patients. Thus, from a societal cost perspective, alternative sites of death, while not associated with a significant change in total societal cost of end-of-life care, resulted in changes in the distribution of costs borne by different stakeholders.

A comparison of observers' and self-report pain ratings for children with cerebral palsy.

OBJECTIVES: This study aimed to examine (1) the relationship between children's self-reports of pain and their different care providers' pain ratings, (2) the relationship between different care providers' ratings of pain in children with cerebral palsy (CP), and (3) whether the child's level of disability influences care providers' pain ratings. METHODS: Sixty-three children with CP were separated into 2 groups according to whether they were able to pass a self-report training task. Pain was rated using a Numerical Rating Scale and the Non-Communicating Children's Pain Checklist-Postoperative Version (NCCPC-PV). Children were observed during their regular physiotherapy sessions at 3 separate time segments (Baseline, Stretch Procedure, and Recovery). RESULTS: As anticipated, results showed that all observers reported significantly higher pain scores during a physiotherapy stretching procedure than the baseline and recovery segments. Observers' NCCPC-PV scores were significantly higher during the stretch procedure for the children who did not pass the self-report training task. Findings also indicated that parents tended to report significantly lower pain scores compared with both their children and other observers. CONCLUSIONS: The findings bring into question the accuracy of single-observer pain ratings for children with CP and possess implications for the management of pain in children with CP.

The magnitude, share and determinants of unpaid care costs for home-based palliative care service provision in Toronto, Canada.

With increasing emphasis on the provision of home-based palliative care in Canada, economic evaluation is warranted, given its tremendous demands on family caregivers. Despite this, very little is known about the economic outcomes associated with home-based unpaid care-giving at the end of life. The aims of this study were to (i) assess the magnitude and share of unpaid care costs in total healthcare costs for home-based palliative care patients, from a societal perspective and (ii) examine the sociodemographic and clinical factors that account for variations in this share. One hundred and sixty-nine caregivers of patients with a malignant neoplasm were interviewed from time of referral to a home-based palliative care programme provided by the Temmy Latner Centre for Palliative Care at Mount Sinai Hospital, Toronto, Canada, until death. Information regarding palliative care resource utilisation and costs, time devoted to care-giving and sociodemographic and clinical characteristics was collected between July 2005 and September 2007. Over the last 12 months of life, the average monthly cost was $14 924 (2011 CDN$) per patient. Unpaid care-giving costs were the largest component - $11 334, accounting for 77% of total palliative care expenses, followed by public costs ($3211; 21%) and out-of-pocket expenditures ($379; 2%). In all cost categories, monthly costs increased exponentially with proximity to death. Seemingly unrelated regression estimation suggested that the share of unpaid care costs of total costs was driven by patients' and caregivers' sociodemographic characteristics. Results suggest that overwhelming the proportion of palliative care costs is unpaid care-giving. This share of costs requires urgent attention to identify interventions aimed at alleviating the heavy financial burden and to ultimately ensure the viability of home-based palliative care in future.

The Canadian STOP-PAIN project: the burden of chronic pain-does sex really matter?

OBJECTIVES: The Canadian STOP-PAIN Project assessed the human and economic burden of chronic pain (CP) in individuals on waitlists of Canadian multidisciplinary pain treatment facilities. This article focuses on sex differences. Objectives were to (1) determine the pain characteristics and related biopsychosocial factors that best differentiated women and men with CP; and (2) examine whether public and private costs associated with CP differed according to sex. MATERIALS AND METHODS: Sample consisted of 441 women and 287 men who were evaluated using self-administered questionnaires and a structured interview protocol. A subsample (233 women and 137 men) recorded all pain-related expenditures in a comprehensive diary over 3 months. RESULTS: Results revealed that the burden of illness associated with CP was comparable in both sexes for average and worst pain intensity, pain impact on daily living, quality of life, and psychological well-being. The same was true for pain-related costs. The results of a hierarchical logistic regression analysis, in which sex was treated as the dependent variable, showed that factors that differentiated men and women were: work status, certain circumstances surrounding pain onset, present pain intensity, intake of particular types of pain medication, use of certain pain management strategies, pain beliefs, and utilization of particular health care resources. DISCUSSION: This study suggests that women and men who are referred to multidisciplinary pain treatment facilities do not differ significantly in terms of their pain-related experience. However, the aspects that differ may warrant further clinical attention when assessing and managing pain.

Family caregiver satisfaction with home-based nursing and physician care over the palliative care trajectory: results from a longitudinal survey questionnaire.

BACKGROUND: A limited understanding of satisfaction with home-based palliative care currently exists. AIM: This study measured family caregivers' satisfaction with home-based physician and nursing palliative care services, and explored predictors of satisfaction, across the palliative care trajectory. DESIGN: A longitudinal, cohort design was used. Family caregivers were interviewed by telephone by-weekly from palliative care admission until death. Satisfaction was assessed using the Quality of End-of-Life care and Satisfaction with Treatment (QUEST) questionnaire. Multiple logistic regression models were used to determine the extent to which demographic, quality of care, and service related variables predicted satisfaction. SETTING/PARTICIPANTS: Family caregivers (N=104) of palliative care patients. RESULTS: Each of the nine quality of care parameters were consistently found to be significant predictors of overall satisfaction with palliative care. CONCLUSIONS: The results may inform key health policy issues. Specifically, knowledge of how quality of care parameters predict family caregivers' satisfaction over the course of the palliative care trajectory may aid managers responsible for resource allocation and the determination of home care standards.

Predictors of health service use over the palliative care trajectory.

BACKGROUND: Health system restructuring coupled with the preference of patients to be cared for at home has altered the setting for the provision of palliative care. Accordingly, there has been emphasis on the provision of home-based palliative care by multidisciplinary teams of health care providers. Evidence suggests that these teams are better able to identify and deal with the needs of patients and their family members. Currently there is a lack of literature examining the predictors of palliative care service use for various professional service categories. OBJECTIVE: The purpose of this study was to examine the predictors of the propensity and intensity of five main health service categories in the last three months of life for home-based palliative care patients. DESIGN: This was a prospective cohort study. The predictors of service use were assessed using a two-part model, which treats the decision to use a service (propensity) and the amount of service use (intensity) as two distinct processes. Propensity was modeled using a logistic regression and intensity was modeled using ordinary least squares regression. RESULTS: The results indicate that each service category emerged with a different set of predictor variables. Common predictors of health service use across service categories were patient age and functional status. The results suggest that a consistent set of predictors across service categories does not exist, and thus the determinants of access to each service category are unique. CONCLUSION: These findings will help case managers, health administrators, and policy decision makers better allocate human resources to palliative patients.

The size, share, and predictors of publicly financed healthcare costs in the home setting over the palliative care trajectory: a prospective study.

INTRODUCTION: The increasing attention on home-based service provision for end-of-life care has resulted in greater financial demands being placed on family caregivers. The purpose of this study was to assess publicly financed costs within a home-based setting from a societal perspective. METHODS: A prospective cohort study design was employed. In all, 129 caregivers of palliative care patients were interviewed biweekly for a total of 667 interviews. Multiple regression analysis (log-linear regression and seemingly unrelated regression [SUR]) was conducted. RESULTS: While publicly financed costs accounted for 20 percent of the full economic costs and increased with proximity to death, 76.7 percent of costs were borne by patients' caregivers in the form of unpaid caregiving. The share of publicly financed healthcare costs was driven by patients' and caregivers' sociodemographic and clinical characteristics. CONCLUSION: These findings warrant affording greater attention to policies and interventions intended to reduce the economic burden on palliative patients and their caregivers.

The Ambulatory and Home Care Record: A Methodological Framework for Economic Analyses in End-of-Life Care.

Provision of end-of-life care in North America takes place across a multitude of settings, including hospitals, ambulatory clinics and home settings. As a result, family caregiving is characteristically a major component of care within the home. Accordingly, economic evaluation of the end-of-life care environment must devote equal consideration to resources provided by the public health system as well as privately financed resources, such as time and money provided by family caregivers. This paper addresses the methods used to measure end-of-life care costs. The existing empirical literature will be reviewed in order to assess care costs with areas neglected in this body of literature to be identified. The Ambulatory and Home Care Record, a framework and tool for comprehensively measuring costs related to the provision and receipt of end-of-life care across all health care settings, will be described and proposed. Finally, areas for future work will be identified, along with their potential contribution to this body of knowledge.

The Canadian STOP-PAIN project - Part 1: Who are the patients on the waitlists of multidisciplinary pain treatment facilities?

PURPOSE: The Canadian STOP-PAIN Project assessed the human and economic burden of chronic pain in individuals on waitlists of Multidisciplinary Pain Treatment Facilities (MPTF). This article presents the patients' bio-psycho-social profile. METHODS: A sample of 728 patients was recruited from waitlists of eight university-affiliated MPTFs across Canada. Subjects completed validated questionnaires to: 1) assess the characteristics and impact of their pain; and 2) evaluate their emotional functioning and quality of life (QoL). Follow-up questionnaires were completed by a subgroup of 271 patients three months later. RESULTS: Close to 2/3 of the participants reported severe pain (> or = 7/10) that interfered substantially with various aspects of their daily living and QoL. Severe or extremely severe levels of depression were common (50.0%) along with suicidal ideation (34.6%). Patients aged > 60 yr were twice as likely to experience severe pain (> or = 7/10) as their younger counterparts (P = 0.002). Patients with frequent sleep problems were more at risk of reporting severe pain (P < or = 0.003). Intense pain was also associated with a greater tendency to catastrophize (P < 0.0001) severe depressive symptoms (P = 0.003) and higher anger levels (P = 0.016). Small but statistically significant changes in pain intensity and emotional distress were observed over a three-month wait time (all P < 0.05). CONCLUSION: This study highlights the severe impairment that patients experience waiting for treatment in MPTFs. Knowing that current facilities cannot meet the clinical demand, it is clear that effective prevention/treatment strategies are needed earlier in primary and secondary care settings to minimize suffering and chronicity.

The Canadian STOP-PAIN project - Part 2: What is the cost of pain for patients on waitlists of multidisciplinary pain treatment facilities?

PURPOSE: The Canadian STOP-PAIN Project was designed to document the human and economic burden of chronic pain in individuals on waitlists of Multidisciplinary Pain Treatment Facilities (MPTF). This paper describes the societal costs of their pain. METHODS: A subgroup of 370 patients was selected randomly from The Canadian STOP-PAIN Project. Participants completed a self-administered costing tool (the Ambulatory and Home Care Record) on a daily basis for three months. They provided information about publicly financed resources, such as health care professional consultations and diagnostic tests as well as privately financed costs, including out-of-pocket expenditures and time devoted to seeking, receiving, and providing care. To determine the cost of care, resources were valued using various costing methods, and multivariate linear regression was used to predict total cost. RESULTS: Overall, the median monthly cost of care was $1,462 (CDN) per study participant. Ninety-five percent of the total expenditures were privately financed. The final regression model consisted of the following determinants: educational level, employment status, province, pain duration, depression, and health-related quality of life. This model accounted for 35% of the variance in total expenditure (P < 0.001). CONCLUSION: The economic burden of chronic pain is substantial in patients on waitlists of MPTFs. Consequently, it is essential to consider this burden when making decisions regarding resource allocation and waitlist assignment for a MPTF. Resource allocation decision-making should include the economic implications of having patients wait for an assessment and for care.

Cost variations in ambulatory and home-based palliative care.

Restructuring health care in Canada has emphasized the provision of ambulatory and home-based palliative care. Acquiring economic evidence is critical given this trend and its tremendous demands on family caregivers. The purposes of this study were: 1) to comprehensively assess the societal costs of home-based palliative care; and 2) to examine the socio-demographic and clinical factors that account for variations in costs over the course of the palliative trajectory. One hundred and thirty-six family caregivers were interviewed every two weeks from time of palliative referral until death. Information regarding appointments, travel and out-of-pocket expenses, time devoted to caregiving, as well as demographic and clinical characteristics were measured. The mean monthly cost of care per patient was $24,549 (2008 CDN$). Family caregivers' time costs comprised most costs (70%). Multivariable linear regression indicated that costs were greater for patients who: had lower physical functioning (p < 0.001); lived with someone (p = 0.007); and when the patients approached death (p = 0.021). Information highlighting the variation in costs across individuals may aid policy makers and mangers in deciding how to allocate resources. Greater clarity regarding costs over the course of the palliative trajectory may improve access to care.

Determinants of place of death for recipients of home-based palliative care.

INTRODUCTION: Health system restructuring combined with the preferences of many terminally ill care recipients and their caregivers has led to an increase in home-based palliative care, yet many care recipients die within institutional settings such as hospitals. This study sought to determine the place of death and its predictors among palliative care patients with cancer. METHODS: Study participants were recruited from the Temmy Latner Centre for Palliative Care, a regional palliative care program based in Toronto, Canada. A total of 137 patients and their family caregivers participated in the study; application of various exclusion criteria restricted analysis to a sub-sample of 110. Bivariate (chi-square) and multivariate (logistic regression) analyses were conducted. RESULTS: 66 percent of participants died at home. Chi-square analysis indicated that women were more likely to die at home than men; multivariate analysis indicated that women and those living with others were significantly more likely to die at home than men or those who lived alone. CONCLUSION: Place of death is influenced by the socio-demographic characteristics of patients, the characteristics of their caregivers, and health service factors. Palliative care programs need to tailor services to men and those living alone in order to reduce institutional deaths.

Costs and determinants of privately financed home-based health care in Ontario, Canada.

The Canadian context in which home-based healthcare services are delivered is characterised by limited resources and escalating healthcare costs. As a result, a financing shift has occurred, whereby care recipients receive a mixture of publicly and privately financed home-based services. Although ensuring that care recipients receive efficient and equitable care is crucial, a limited understanding of the economic outcomes and determinants of privately financed services exists. The purposes of this study were (i) to determine costs incurred by families and the healthcare system; (ii) to assess the determinants of privately financed home-based care; and (iii) to identify whether public and private expenditures are complements or substitutes. Two hundred and fifty-eight short-term clients (<90 days of service utilisation) and 256 continuing care clients (>90 days of utilisation) were recruited from six regions across the province of Ontario, Canada, from November 2003 to August 2004. Participants were interviewed by telephone once a week for 4 weeks and asked to provide information about time and monetary costs of care, activities of daily living (ADL), and chronic conditions. The mean total cost of care for a 4-week period was $7670.67 (in 2004 Canadian dollars), with the overwhelming majority of these costs (75%) associated with private expenditures. Higher age, ADL impairment, being female, and a having four or more chronic conditions predicted higher private expenditures. While private and public expenditures were complementary, private expenditures were somewhat inelastic to changes in public expenditures. A 10% increase in public expenditures was associated with a 6% increase in private expenditures. A greater appreciation of the financing of home-based care is necessary for practitioners, health managers and policy decision-makers to ensure that critical issues such as inequalities in access to care and financial burden on care recipients and families are addressed.