BACKGROUND: Early end-of-life (EOL) discussions improve patient satisfaction, quality of care, and the cost-effectiveness of care. However, some US studies show that radiation oncologists (ROs) are unlikely to discuss EOL issues until the patients develop significant symptoms or the families initiate the discussion. There have been no prior studies describing the patterns of EOL discussions among Canadian ROs. The objectives of this study were: (I) to describe the patterns of EOL discussions among Canadian ROs; (II) to identify the barriers to EOL conversation among Canadian ROs; (III) to assess the attitudes of Canadian ROs toward Medical Assistance in Dying (MAiD).
METHODS: The 22-question online survey was distributed to the members of Canadian Association of Radiation Oncologists (CARO). Demographics, EOL discussion patterns, perception of EOL discussions, barriers, and the impact of MAiD were evaluated.
RESULTS: Sixty ROs responded out of 326. Prognosis (57%) and goals of care (58%) were routinely discussed, while advanced directive (40%) and planned site of death (12%) were not. More than 90% felt that early EOL discussions with palliative patients were important. The amount of palliative discussion training was correlated with confidence in EOL discussion (P <0.01), perceived importance of RO role in EOL (P=0.006), and the frequency of planned site of death discussion (P=0.041). The most frequently identified barriers were lack of time, uncertainty about prognosis, and concern for patient disappointment. Many ROs provided MAiD information upon request or case-by-case, but only 3% provided the information routinely.
CONCLUSIONS: Canadian ROs recognize the importance of EOL discussions, but they do not routinely incorporate advanced directive or site of death in their discussions. ROs with more palliative discussion training were more confident in EOL discussion and likely to engage in them earlier. Short structured training may improve the confidence and quality of EOL discussion. Time constraint is the number one barrier that may be alleviated by delegation of tasks and patient education tools. Discussion about MAiD is supported but not routine among Canadian ROs.
BACKGROUND: Patients with advanced chronic obstructive pulmonary disease (COPD) have a significant symptom burden despite maximal medical therapy, yet few are referred for concomitant palliative care.
OBJECTIVE: To evaluate the utilization and impact of palliative care on the location of death and to identify clinical variables associated with palliative care contact.
DESIGN: Retrospective chart review from 2010 to 2016 at the VA Western New York Healthcare System using ICD-9/10 diagnosis of COPD. Palliative care contact was identified by Z51.5 or stop code 353.
RESULTS: Only 0.5% to 2% of living patients received palliative care, increasing abruptly at death (6%). Lower diffusion capacity for carbon monoxide (DLCO) (greater emphysema) was associated with palliative care contact, independent of comorbid disease burden or age. Initial outpatient contact was associated with a longer duration of palliative care (P = .003) and death in a home-like setting. Outpatient palliative care was associated with more severe airflow obstruction (forced expiratory volume in 1 second, percent predicted [FEV1%]), whereas greater disease exacerbation frequency was associated with inpatient contact. COPD patients not referred to palliative care had a greater comorbid disease burden, similar FEV1%, fewer disease exacerbations, and a greater DLCO.
CONCLUSION: Few patients with COPD received palliative care, similar to national trends. Initial outpatient palliative contact had the longest duration of care and death in the preferred home environment. The extent of emphysema (DLCO reduction) and more frequent disease exacerbations identified in patients were more likely to receive palliative care. Our study begins to define the benefits of palliative care in advanced COPD and confirms underutilization in the years before death, where a prolonged impact on the quality of life may be realized.
BACKGROUND: Insight into health conditions associated with death can inform healthcare policy. We aimed to cluster 27,525,663 deceased people based on the health conditions associated with death to study the associations between the health condition clusters, demographics, the recorded underlying cause and place of death.
METHODS: Data from all deaths in the United States registered between 2006 and 2016 from the National Vital Statistics System of the National Center for Health Statistics were analyzed. A self-organizing map (SOM) was used to create an ordered representation of the mortality data.
RESULTS: 16 clusters based on the health conditions associated with death were found showing significant differences in socio-demographics, place, and cause of death. Most people died at old age (73.1 (18.0) years) and had multiple health conditions. Chronic ischemic heart disease was the main cause of death. Most people died in the hospital or at home.
CONCLUSIONS: The prevalence of multiple health conditions at death requires a shift from disease-oriented towards person-centred palliative care at the end of life, including timely advance care planning. Understanding differences in population-based patterns and clusters of end-of-life experiences is an important step toward developing a strategy for implementing population-based palliative care.
INTRODUCTION: Metastatic lung cancer is an incurable disease which results in a high burden of symptoms, a poor quality of life and an expected prognosis of less than 1 year after diagnosis. Treatment shortly before death may result in potential burdensome and inappropriate hospital admissions and hospital deaths. Dying at home is, at a population level, considered a quality for good end-of-life care.
AIM: We examined what percentage of patients with metastatic lung cancer died inside the hospital and if hospital death, or other characteristics of the patient, oncologist or healthcare, were associated with treatment in the last month of life.
METHODS: This retrospective cohort study evaluated the medical records of 1322 patients with metastatic lung cancer who received care at one of 10 hospitals across the Netherlands and died between 1-6-2013 and 31-7-2015. Demographic and clinical characteristics were obtained from the medical records.
RESULTS: In total, 18% of the patients died during a hospital admission. This percentage was higher for patients who received chemotherapy (42%) or targeted therapy with tyrosine kinase inhibitors (25%) in the last month of life. Patients younger than 60 years of age, patients who received chemotherapy in the last month of life and patients in whom TKIs were started in the last month of life were more likely to die inside the hospital.
DISCUSSION: In the Netherlands, fewer than one in five patients with metastatic lung cancer died in the hospital and in-hospital death was associated with the relatively late use of chemotherapy or targeted therapy. Careful selection of patients for disease-modifying therapy might enhance the opportunity for patients to die at their preferred place.
Background: Discharging patients from inpatient palliative care units to the community is aligned with patients' desires to be cared for and die at home. However, there is little research examining patient outcomes after discharge.
Objective: To describe the outcomes of patients discharged from an inpatient palliative care unit.
Design: A single-institution retrospective cohort study using medical record data linked to regional acute care hospital and home care data.
Setting/Participants: Patients (n = 75) discharged to the community over a one-year period from a 31-bed inpatient palliative care unit in an academic continuing care facility.
Measurements: Survival, postdischarge hospitalizations and emergency department visits, and place of death.
Results: Patients discharged to the community had poor prognosis. Over one-third had a discharge Palliative Performance Score <50. The median survival after discharge was 96 days, and 36% of decedent patients died in an acute care hospital. Thirteen percent of patients were hospitalized, and 23% visited an emergency department within 30 days of discharge, often for reasons that could have been managed in the community. Certain groups of patients were at greater risk of acute care use and in-hospital deaths, including younger patients, patients with nonmalignant diseases, and patients discharged home or retirement home, compared to long-term care settings.
Conclusions: Patients discharged from an inpatient palliative care setting are at risk of postdischarge hospitalizations, emergency department visits, and in-hospital deaths, despite having community supports in place. Variations in outcomes can point to groups of patients who may require greater intensity of supports postdischarge.
Around 70% of people would prefer to die at home, yet around 50% die in hospital, according to Dying Matters. In collaboration with a local hospice, a literature review was undertaken to address the question: 'what factors precipitate admission to hospital in the last few days of a person's life for those who had expressed a preference to die at home?' Four electronic databases were searched, with a date range of 2008 to 2018. After 80 articles were screened, 13 were included in the review. The findings identified a number of barriers experienced by people with non-cancer conditions nearing the end of life and their family carers, which inhibit the transition to end-of-life care. The findings suggest that hospice support for non-cancer patients with a deteriorating health trajectory needs to precede patient and family recognition that end-of-life care is needed.
OBJECTIVE: To determine factors influence place of death (POD) for end-stage cancer patients and investigate how the healthcare utilization mediates on the effect of socioeconomic status (SES) on POD.
DESIGN: A population-based, retrospective study from July 2015 to June 2017.
SETTING: Yichang, China.
PARTICIPANTS: 894 end-stage cancer patients.
MAIN OUTCOME MEASURE: POD.
RESULTS: Patients of hospital death experience more inpatient hospitalization services (IHS) and emergency department visits. Patients enrolled in the New Rural Cooperative Medical Scheme (OR = 7.60, P < 0.001) and Urban Employee Basic Medical Insurance (OR = 28.0, P < 0.001) have higher rates of hospital death than those in the Urban Resident-based Basic Medical Insurance. Living with spouse (OR = 1.72, P = 0.019) and receiving higher education (OR = 1.92, P = 0.004), increase the likelihood of hospital death by 72% and 92%, respectively. The probability of hospital death will increase by 14% and decrease by 4% per IHS and outpatient services occur, respectively. Outpatient services (Z = -2.28, P < 0.001), and IHS (Z = 2.17, P < 0.001) mediate 1.81% and 1.89%, respectively, of the effect of health insurance on POD. The overall effect of the mediators is non-statistically significant (Z = 0.09, P = 0.825).
CONCLUSION: POD is mainly driven by SES. The relationship between health insurance and POD is partly mediated by outpatient services and IHS, respectively. The results corroborated that hospital and home services should be coherently bridged. Furthermore, benefit packages for end-stage cancer patients could be redesigned.
Population-based surveys suggest that up to 70% of Australians wish to receive care at home when faced with advanced terminal illness; however, only 14% achieve this goal. This is a comparatively low rate compared to other developed countries and due to a myriad of factors, including care fragmentation, lack of advance care planning, inadequate symptom control and limited availability of community-based palliative care services.
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BACKGROUND: Socioeconomic disparities in home death have been noted in the literature. Home-based palliative care increases access to home death and has been suggested as a means to decrease these disparities.
AIM: Our study examines the association between socioeconomic status and other demographic factors on place of death in a population receiving home palliative care in Toronto, Canada.
DESIGN: This is a retrospective chart review of patients who died between August 2013 and August 2015 when admitted to a home-based palliative care service. Multivariate multinomial regression examined the relationship between the place of death (home, palliative care unit [PCU], or acute care) with age, gender, primary diagnosis, and income quintile. Bivariate logistic regression was fitted to calculate the odds ratio (OR) and probability of preference for home death.
SETTING/PARTICIPANTS: Patients receiving home-based palliative care services from the Latner Centre for Palliative Care in Toronto, Canada.
RESULTS: A total of 2066 patients were included in multivariate analysis. Patients in the lowest income quintile had increased odds of dying in acute care (OR = 2.41, P < .001) or dying in PCU (OR = 1.64, P = .008) than patients in highest income quintile. Patients in the next lowest income quintiles 2 and 3 were also more likely to die in acute care. The rate of preference for home death was significantly lower in the lowest income quintile (OR = 0.47, P = .0047).
CONCLUSIONS: Patients in lower income quintiles are less likely to die at home, despite receiving home-based palliative care, although they may also be less likely to prefer home death.
BACKGROUND: Socio-economic factors play important roles in place of death. However, up-to-date knowledge on socio-economic determinants for place of death is warranted including analysis of collinearity between socio-economic determinants.
AIM: To examine associations between socio-economic determinants (social class, deprivation level in area of residence, income, education, occupation, urbanisation) and place of death among adult patients with life-limiting illnesses. Furthermore, to describe how these factors are operationalised and examined for collinearity.
DESIGN: A systematic review was performed (PROSPERO, record: CRD42018091218) and quality was assessed using the Newcastle-Ottawa Scale.
DATA SOURCES: A comprehensive search of PubMed, Embase, CINAHL, Scopus and PsycINFO was conducted for studies published from 1 January 2008 until the date of the search (23 March 2018) in English or Scandinavian languages.
RESULTS: Of the 1599 unique citations identified, 34 studies were eligible. Dying at home was to a high degree associated with better financial situation and living in rural areas. Furthermore, hospital death was associated with a high level of deprivation in the area of residence and being employed. Regarding educational level, we found mixed and inconclusive results.
CONCLUSION: Inequalities concerning place of death were found, and attention towards socio-economic inequality concerning place of death is necessary, especially in patients with a poor financial status, patients living in deprived and metropolitan areas and patients who are employed. Furthermore, we found a low degree of assessment for collinearity and adjustment of socio-economic variables. These issues should be considered in planning of future studies of socio-economic determinants for place of death.
OBJECTIVES: The majority of people would prefer to die at home and the stated intentions of both statutory and voluntary healthcare providers aim to support this. This service evaluation compared the preferred and actual place of death of patients known to a specialist community palliative care service.
DESIGN: All deaths of patients (n=2176) known to the specialist palliative care service over a 5-year period were examined through service evaluation to compare the actual place of death with the preferred place of death previously identified by the patient. Triggers for admission were established when the patients did not achieve this preference.
RESULTS: Between 2009 and 2013, 73% of patients who expressed a choice about their preferred place of death and 69.3% who wanted to die at home were able to achieve their preferences. During the course of their illness, 9.5% of patients changed their preference for place of death. 30% of patients either refused to discuss or no preference was elicited for place of death.
CONCLUSIONS: Direct enquiry and identification of preferences for end-of-life care is associated with patients achieving their preference for place of death. Patients whose preferred place of death was unknown were more likely to be admitted to hospital for end-of-life care.
BACKGROUND: It is often suggested that terminally ill patients favour end-of-life care at home. Yet, it is unclear how these preferences are formed, if the process is similar for patients and family caregivers, and if there are discrepancies between preferences for place of care and place of death. Understanding these nuances is essential to support people in their decision-making and ultimately provide better care at the end-of-life.
AIM: To gain an in-depth understanding of how terminally ill patients and their family caregivers make decisions about preferred place of care and place of death.
DESIGN: Semi-structured interviews with patients and family caregivers, which were analysed thematically using qualitative description.
SETTING/PARTICIPANTS: A total of 17 participants (8 patients and 9 caregivers) recruited from an acute palliative care hospital ward, a sub-acute hospice unit, and a palliative homecare organisation in Melbourne, Australia.
RESULTS: The process of forming location preferences was shaped by uncertainty relating to the illness, the caregiver and the services. Patients and caregivers dealt with this uncertainty on a level of thoughts, emotions, and actions. At the end of this process, patients and caregivers expressed their choices as contextual, personal, relational, conditional and flexible preferences.
CONCLUSIONS: These findings suggest that in many cases end-of-life decision-making does not conclude with a clear and stable choice. Understanding the reasons for the malleability of preferences and the process of how they are formed has implications for both clinicians and researchers.
BACKGROUND: Aggressive end-of-life (EOL) care is associated with lower quality of life and greater regret about treatment decisions. Higher EOL costs are also associated with lower quality EOL care. Advance care planning and goals-of-care conversations ("EOL discussions") may influence EOL health-care utilization and costs among persons with cancer.
OBJECTIVE: To describe associations among EOL discussions, health-care utilization and place of death, and costs in persons with advanced cancer and explore variation in study measures.
METHODS: A systematic review was conducted using PubMed, Embase, and CINAHL. Twenty quantitative studies published between January 2012 and January 2019 were included.
RESULTS: End-of-life discussions are associated with lower health-care costs in the last 30 days of life (median US$1048 vs US$23482; P < .001); lower likelihood of acute care at EOL (odds ratio [(OR] ranging 0.43-0.69); lower likelihood of intensive care at EOL (ORs ranging 0.26-0.68); lower odds of chemotherapy near death (ORs 0.41, 0.57); lower odds of emergency department use and shorter length of hospital stay; greater use of hospice (ORs ranging 1.79 to 6.88); and greater likelihood of death outside the hospital. Earlier EOL discussions (30+ days before death) are more strongly associated with less aggressive care outcomes than conversations occurring near death.
CONCLUSIONS: End-of-life discussions are associated with less aggressive, less costly EOL care. Clinicians should initiate these discussions with patients having cancer earlier to better align care with preferences.
The effect of hospice care on place of death among centenarians remained unexplored. Using data obtained from National Health Insurance Research Database (2002-2010), we compared the differences in place and cause of death between centenarians and noncentenarians. These data were stratified into centenarian (n = 2495) and noncentenarian (n = 820 563) death. Data in place and cause of death and hospice care interventions were retrieved. Poisson regression models were used to evaluate factors associated with the centenarians' place of death. Time series models were used to predict the number of centenarian deaths until 2025. Most (63.8%) of the centenarians died at their own homes, followed by 30.5% who died in hospital. Hospice home care was involved in only 0.3% of the centenarian deaths but in 1.8% of the noncentenarian deaths. The leading causes of death among centenarians were respiratory diseases (16.6%), circulatory diseases (15.2%), and pneumonia (14.8%). Among the centenarians, those who died of circulatory disease, old age, and respiratory diseases were more likely to die at their own homes. We forecasted the number of annual centenarian deaths to reach 800 in 2025. Therefore, an increase in the provision of advanced care planning and earlier home hospice care intervention may enable centenarians to die at their own residence.
BACKGROUND: Patients with serious mental disorders have poorer healthcare outcomes at the end of life and are at greater risk of dying from unnatural causes. Aims: To explore place of death and demographic and clinical correlates of unnatural causes of death in patients with serious mental disorders.
METHOD: Routinely collected patient data were used to explore bivariate and adjusted associations between covariates and natural/unnatural cause of death.
RESULTS: In multivariable analysis (n = 1029), dying at home (odds ratio (OR) = 1.87, 95% CI 1.03-3.40), 'other' locations (OR = 16.50, 95% CI 7.57-36.00), younger age (OR = 17.26, 95% CI 8.28-36.00) and a diagnosis other than schizophrenia spectrum disorder (OR = 1.69, 95% CI 1.04-2.73) were correlates of unnatural cause of death.
CONCLUSIONS: Deaths from unnatural causes were high and more likely to occur at home and non-healthcare settings. Unnatural causes of death were higher in younger patients with non-schizophrenia spectrum disorder diagnoses. Declaration of interest: F.G. has received support or honoraria for CME, advisory work and lectures from Bristol-Myers Squibb, Janssen, Lundbeck, Otsuka, Roche, and Sunovion, and has a family member with professional links to Lilly and GSK, including shares.
BACKGROUND: High rates of health care utilization at the end of life may be a marker of care that does not align with patient-stated preferences. We sought to describe trends in end-of-life care and factors associated with dying in hospital.
METHODS: We conducted a population-level retrospective cohort study of adult decedents in Ontario between Apr. 1, 2004, and Mar. 31, 2015, using linked administrative data sets, including the Office of the Registrar General for Deaths database, the hospital Discharge Abstract Database, the National Ambulatory Care Reporting System and physicians' billing claims (Ontario Health Insurance Plan). The primary outcome was place of death. To determine health care utilization and health care costs during the 6 months before death, we also identified admissions to hospital and to the intensive care unit, emergency department visits, and receipt of mechanical ventilation and palliative care.
RESULTS: In the last 6 months of life, 77.3% of 962 462 decedents presented to an emergency department, 68.4% were admitted to hospital, 19.4% were admitted to an intensive care unit, and 13.9% received mechanical ventilation. Forty-five percent of all deaths occurred in hospital, a proportion that declined marginally over time, whereas receipt of palliative care increased during terminal hospital admissions (from 14.0% in fiscal year 2004/05 to 29.3% in 2014/15, p < 0.001) and in the last 6 months of life (from 28.1% in 2004/05 to 57.7% in 2014/15, p < 0.001). The proportion of decedents who presented to the emergency department, were admitted to hospital or were admitted to the intensive care unit in the last 6 months of life did not change over 11 years. The mean total health care costs in the last 6 months of life were highest among those dying in hospital, with most costs attributable to inpatient medical care.
INTERPRETATION: Health care utilization in the last 6 months of life was substantial and did not decrease over time. It is possible that increased capacity for palliative, hospice and home care at the end of life may help to better align health system resources with the preferences of most patients, a topic that should be explored in future studies.
As healthcare systems worldwide are confronted with increasing numbers of aging patients and those living with life-limiting illnesses, the topic of where people want to spend their last days has received considerable attention. However, the strategies that researchers and clinicians use to capture these end-of-life views vary greatly in four key questions. These include: what, how, when and who to ask about location preferences. We will argue that how researchers and clinicians choose to answer these questions directly influences their findings. Based on these considerations, we will highlight ways to improve future palliative care and empirical end-of-life studies by addressing the precision, methods, timing and sources of preference assessments. Only when we are able to accurately identify where people want to spend their last days, can we begin to meet the needs of patients as they approach the final stage of their lives.
Background: Little is known about the role of geographic access to inpatient palliative and end of life care (PEoLC) facilities in place of death and how geographic access varies by settlement (urban and rural). This study aims to fill this evidence gap.
Methods: Individual-level death data in 2014 (N = 430,467, aged 25 +) were extracted from the Office for National Statistics (ONS) death registry and linked to the ONS postcode directory file to derive settlement of the deceased. Drive times from patients’ place of residence to nearest inpatient PEoLC facilities were used as a proxy estimate of geographic access. A modified Poisson regression was used to examine the association between geographic access to PEoLC facilities and place of death, adjusting for patients’ socio-demographic and clinical characteristics. Two models were developed to evaluate the association between geographic access to inpatient PEoLC facilities and place of death. Model 1 compared access to hospice, for hospice deaths versus home deaths, and Model 2 compared access to hospitals, for hospital deaths versus home deaths. The magnitude of association was measured using adjusted prevalence ratios (APRs).
Results: We found an inverse association between drive time to hospice and hospice deaths (Model 1), with a dose–response relationship. Patients who lived more than 10 min away from inpatient PEoLC facilities in rural areas (Model 1: APR range 0.49–0.80; Model 2: APR range 0.79–0.98) and urban areas (Model 1: APR range 0.50–0.83; Model 2: APR range 0.98–0.99) were less likely to die there, compared to those who lived closer (i.e. = 10 min drive time). The effects were larger in rural areas compared to urban areas.
Conclusion: Geographic access to inpatient PEoLC facilities is associated with where people die, with a stronger association seen for patients who lived in rural areas. The findings highlight the need for the formulation of end of life care policies/strategies that consider differences in settlements types. Findings should feed into local end of life policies and strategies of both developed and developing countries to improve equity in health care delivery for those approaching the end of life.
OBJECTIVE: Hospital use increases in the last 3 months of life. We aimed to examine its association with where people live and its variation across a large health jurisdiction.
METHODS: We studied a number of emergency department presentations and days spent in hospital, and in-hospital deaths among decedents who were hospitalized within 30 days of death across 153 areas in New South Wales (NSW), Australia, during 2010-2015.
RESULTS: Decedents' demographics and health status were associated with hospital use. Primary care and aged care supply had no or minimal influence, as opposed to the varying effects of areal factors-socioeconomic status, remoteness, and distance to hospital last admitted. Overall, there was an approximate 20% difference in hospital use by decedents across areas. In all, 18% to 57% of areas had hospital use that differed from the average.
DISCUSSION: The observed disparity can inform targeted local efforts to strengthen the use of community care services and reduce the burden of end-of-life care on hospitals.
CONTEXT: The end-of-life period is characterized by increased hospital utilization despite patients' preferences to receive care and die at home.
OBJECTIVES: To evaluate the impact of interventions aimed at planning for a home death (Yellow Folder) and managing symptoms in the home (Symptom Response Kit) on place of death and hospital utilization among palliative home care patients.
METHODS: This was an ecologic and retrospective cohort study of palliative home care patients in southeastern Ontario from April 2009 to March 2014. Linked health administrative and clinical databases were used to identify palliative home care patients and their receipt of the interventions, hospitalizations, emergency department visits, and place of death. Bivariable and multivariable regression was used to evaluate outcomes according to patients' receipt of intervention(s).
RESULTS: The proportion of patients who died in the community increased after implementation of the interventions, from 42.8% to 48.5% (p < 0.0001). Compared to patients who received neither intervention, patients who received the Yellow Folder or Symptom Response Kit had an increased likelihood of dying in the community, with the largest relative risk observed in patients who received both interventions (relative risk=2.20, 95% confidence interval 2.05-2.36). Receipt of these interventions was only associated with reductions in hospitalizations or emergency department visits in the six months prior to death.
CONCLUSION: Patients who received the Yellow Folder or Symptom Response Kit were more likely remain at home at the end-of-life. This association was stronger when these interventions were used together.