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End-of-Life Care for Lung Cancer Patients in the United States and Ontario

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Both the United States and Canada offer government-financed health insurance for the elderly, but few studies have compared care at the end of life for cancer patients between the two systems. We identified care for non-small cell lung cancer (NSCLC) patients who died of cancer at age 65 years and older during 1999-2003. Patients were identified from US Surveillance, Epidemiology, and End Results (SEER)-Medicare data (N = 13,533) and the Ontario Cancer Registry (N = 8100). Health claims during the last 5 months of life identified chemotherapy and emergency room use, hospitalizations, and supportive care. We estimated rates per person-months (PM) for short-term survivors (died <6 months after diagnosis) and longer-term survivors (died ≥6 months after diagnosis), adjusting for demographic differences. To test whether monthly rates in Ontario were statistically significantly different from the United States, standardized differences were computed, and a 99% confidence interval (CI) was constructed to account for the multiple tests performed. All statistical tests were two-sided. Rates of chemotherapy use were statistically significantly higher for SEER-Medicare patients than Ontario patients in every month before death (short-term survivors at 5 months before death: SEER-Medicare, 33.2 patients per 100 PM vs Ontario, 9.5 per 100 PM, rate difference = 23.7 per 100 PM, 99% CI = 18.3 to 29.1 per 100 PM, P < .001; longer-term survivors at 5 months before death: SEER-Medicare, 24.4 patients per 100 PM vs Ontario, 14.5 per 100 PM, rate difference = 9.9 per 100 PM, 99% CI = 7.7 to 12.1 per 100 PM, P <. 001). During the last 30 days of life, fewer SEER-Medicare than Ontario patients were hospitalized (short-term survivors, 49.9 vs 78.6 patients per 100 PM, rate difference = 28.6 per 100 PM, 95% CI = 22.9 to 34.4 per 100 PM, P <. 001; longer-term survivors, 44.1 vs 67.1 patients per 100 PM, rate difference = 23.0 per 100 PM, 95% CI = 18.5 to 27.5 per 100 PM, P < .001). NSCLC patients in both Ontario and the United States used extensive end-of-life care. Limited availability of hospice care in Ontario and differing attitudes between the United States and Ontario regarding end-of-life care may explain the differences in practice patterns.
Adjusted rates of emergency room (ER) and hospital use in the last 5 months of life for non-small cell lung cancer patients who died of cancer at age 65 years and older, 19992003. A) Rates of ER admissions (No. of patients admitted per 100 person-months [PM]). B) Rates of inpatient hospital admissions (No. of patients admitted per 100 PM). Monthly rates were adjusted for age (65-69, 70-79, and ≥80 years), sex, income (two highest quintiles, other), and urbanicity (big metropolitan, metropolitan, other). Standardized monthly rates were compared using 99% confidence intervals. For ER visits, P values for differences in all rates for SEER-Medicare patients vs Ontario patients surviving less than 6 months were less than .001. For patients surviving 6 or more months, P values were .152 at 5 months before death, .003 for 4 months before death, and less than.001 for 3-1 month(s) before death. For hospital admissions, P values for differences in all rates for SEER-Medicare patients vs Ontario patients surviving less than 6 months were less than .001. For patients surviving 6 or more months, P values were .222 at 4 months before death, .366 for 3 months before death, and less than.001 for months 5, 2, and 1 before death. The P values for the monthly rates were calculated by creating confidence intervals for the difference between the two standardized rates. The P value reported is such that the (12P) % confidence interval just includes zero. All statistical tests were two-sided. SEER = Surveillance, Epidemiology, and End Results database.
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... Prior studies have described care for symptom management, either in small clinical cohorts, or in nursing homes [5][6][7], hospitals [8,9], hospice [10], or palliative care centers (common in Europe and Asia) [11]. Population-based studies on specific SMS for home-based older adults are limited and have focused primarily on medication management for pain [12] [7,10] or other symptoms [13] with a handful of studies focusing on home visits [14][15][16]. ...
... The results of this study provide new estimates of the extent to which older adults receive CDT at EOL. The estimates of cancer-directed systemic therapy (26.0% and 13.9% at EOL-6 and EOL-1, respectively) are remarkably similar to Warren et al. [14], for 1999-2003. In that study, which examined healthcare utilization for older adults with advanced lung cancer, 24.4 and 10.2 US patients per 100 (adjusted) months received systemic therapy at EOL-5 and EOL-1, respectively. ...
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Background Rather than early hospice enrollment, most Medicare beneficiaries receive “usual care” in the last months of life, outside of the hospice setting. While care intensity during the last weeks of life has been studied extensively, patterns of symptom management services (SMS) and/or cancer-directed therapies (CDT) received over a 6-month end-of-life period have not. Methods This retrospective study used the Surveillance, Epidemiology, and End Results (SEER)–Medicare database to identify decedents diagnosed with lung cancer at age ≥ 66 years between January 2007 and December 2013 who survived ≥ 6 months from diagnosis. Medicare claims identified receipt of SMS and/or CDT. We created monthly indicators for care content (SMS-only, CDT-only, or both; otherwise full-month hospice or inpatient/skilled nursing). Multinomial logistic regression estimated associations between sociodemographics and comorbidity, with care content in the final month. Results Between 6 and 1 months before death, full-month hospice and inpatient/skilled nursing increased; CDT decreased from 31.9 to 18.5%; SMS increased from 86.6 to 97.7%. Relative to full-month hospice, the percentage of patients receiving SMS-only was higher for males, unmarried, younger age, and higher comorbidity; the percentage receiving CDT was also higher for males, unmarried, and younger age, but decreased with increasing comorbidity and over calendar time. Conclusion Among lung cancer decedents observed in the outpatient, nonhospice setting, SMS receipt increased and was nearly universal as death approached. CDT diminished dramatically over the end-of-life period. Associations between sociodemographic characteristics and care setting suggest differences in care preferences or access barriers. Claims represent an important resource for characterizing end-of-life care patterns.
... Previous research from other Asian countries including South Korea (26) and Japan (27) observed greater institutionalization of dying and a decrease in home deaths as a result of rapid economic transformation, alterations in household structure, and growth in medical services particularly hospital-based care. In some of the developed countries, for instance, in the US, there was a trend of increasing home deaths or nursing home deaths due to the improvement of palliative care and the introduction of the Medicare payment system (28)(29)(30). Although POD cannot fully indicate the quality or experience of EOL care, our study indicated an existing gap and mismatch between health needs and healthcare services in China. ...
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Background Chronic respiratory disease (CRD) is a common cause of mortality in China, but little is known about the place of death (POD) among individuals with CRD. Methods Information about CRD-caused deaths was obtained from the National Mortality Surveillance System (NMSS) in China, covering 605 surveillance points in 31 provinces, autonomous regions, and municipalities. Both individual- and provincial-level characteristics were measured. Multilevel logistic regression models were built to evaluate correlates of hospital CRD deaths. Results From 2014 to 2020, a total of 1,109,895 individuals who died of CRD were collected by the NMSS in China, among which home was the most common POD (82.84%), followed by medical and healthcare institutions (14.94%), nursing homes (0.72%), the way to hospitals (0.90%), and unknown places (0.59%). Being male, unmarried, having a higher level of educational attainment, and being retired personnel were associated with increased odds of hospital death. Distribution of POD differed across the provinces and municipalities with different development levels, also presenting differences between urban and rural. Demographics and individual socioeconomic status (SES) explained a proportion of 23.94% of spatial variations at the provincial level. Home deaths are the most common POD (>80%) among patients with COPD and asthma, which are the two major contributors to CRD deaths. Conclusion Home was the leading POD among patients with CRD in China in the study period; therefore, more attention should be emphasized to the allocation of health resources and end-of-life care in the home setting to meet the increasing needs among people with CRD.
... However, these prior characterizations focused on care setting, and did not incorporate information on the content of care received. Several other studies have reported monthly snapshots in care received during EOL [13,14], but transitions in receipt of cancerdirected therapy (CDT) and/or symptom management and supportive care services (SMSCS) provided outside the hospice setting have not been described. In addition, individual EOL care trajectories, particularly whether there is a progression from more to less intensive care as death approaches, have not been examined. ...
Article
Introduction Medicare decedents with cancer often receive intensive care during the last month of life; however, little information exists on longer end-of-life care trajectories. Materials and Methods Using SEER-Medicare data, we selected older adults diagnosed with lung cancer between 2008 and 2013 who survived at least six months and died between 2008 and 2014. Each month we assessed claims to assign care categories ordered by intensity as follows: full-month inpatient/skilled nursing facility > cancer-directed therapy (CDT) only > concurrent CDT and symptom management and supportive care services (SMSCS) > SMSCS only > full-month hospice. We assigned each decedent to one of six trajectories: stable hospice, stable SMSCS, stable CDT with or without concurrent SMSCS, decreasing intensity, increasing intensity, and mixed. Multinomial logistic regression estimated associations between socio-demographics, calendar year, and area hospice use rates with end-of-life trajectory. Results The sample (N = 24,342) was predominantly aged ≥75 years (59.4%) and non-Hispanic White (80.5%); 19.1% lived in healthcare referral regions where ≤50% of cancer decedents received hospice care. Overall, 6.5% were continuously hospice enrolled, 25.6% received SMSCS only, and 29.4% experienced decreasing intensity; 3.9% received CDT or concurrent care, while 8.7% experienced an increase in intensity. Higher healthcare referral region hospice rates were associated with decreasing end-of-life intensity; Black, non-Hispanic decedents had a higher risk of increasing intensity and mixed patterns. Discussion Among older decedents with lung cancer, 62% had six-month end-of-life trajectories indicating low or decreasing intensity, but few received persistent CDT. Demographic characteristics, including race/ethnicity, and contextual measures, including area hospice use patterns, were associated with end-of-life trajectory.
... Furthermore, generalist nurses can also deliver palliative home care in Canada, whereas that may not be possible in the United States. 34 As an example to illustrate these differences, it has been demonstrated that patients with advanced cancer in Washington, United States were more likely to receive aggressive care at EOL compared to patients in Alberta, Canada. 30 Nevertheless, further work is still needed to understand these differences. ...
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Optimizing end‐of‐life (EOL) care for multiple myeloma (MM) represents an unmet need. An administrative cohort in Ontario, Canada was analysed between 2006 and 2018. Aggressive care was defined as two or more emergency‐department visits in the last 30 days before death, or at least two new hospitalizations within 30 days of death, or an intensive care unit (ICU) admission within the last 30 days of life. Supportive care was defined as a physician house‐call in the last two weeks before death, or a palliative nursing or personal support visit at home in the last 30 days before death. Among 5095 patients, 23.2% of patients received chemotherapy at EOL and 55.6% of patients died as inpatient. A minority received aggressive care at EOL [28.3%: autologous stem cell transplant (ASCT), 20.4%: non‐ASCT], and a majority received supportive care at EOL (65.4%: ASCT, 61.5%: non‐ASCT). Supportive care was less likely to be received by those aged over 80 years and in lower‐income neighbourhoods. Supportive care at EOL increased from 56.0% in 2006 to 70.3% in 2018. Despite improvements, many patients with MM experience aggressive care at EOL. Even in a publicly funded health care system, disparities based on age, income and community size are present.
... In our study, there was also a tendency for a higher proportion of patients dying in the hospital when receiving SACT within last 30 days of life, which has also been proposed as an indicator for the assessment of quality of care in cancer patients [21]. There is a paucity of recent data regarding the place of death in patients with lung cancer and other tumor types, but the proportion of patients dying in an acute hospital ranges from 28% to 60% [28][29][30]. Our numbers seem higher than what has been reported, which might be explained by many factors. ...
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Background: The use of chemotherapy near end of life (EOL) for various cancers is increasing and has been shown to be associated with delayed access to palliative care (PC) and increased aggressiveness in EOL care, without any benefit on survival. Methods: This retrospective study included 90 patients with metastatic non-small cell lung cancer (NSCLC) who received at least one line of palliative systemic anticancer therapy (SACT) and died between 1 November 2014, and 31 October 2016, at Institut universitaire de cardiologie et de pneumologie de Québec (IUCPQ). Our primary objective was to evaluate the proportion of patients with NSCLC receiving SACT within 30 days of death. Secondary outcomes were to determine the mean and median delays between the administration of the last treatment and death, and to evaluate if there were differences in characteristics and outcomes (including overall survival (OS)) between patients treated or not within 30 days of death. Results: In our cohort, 22% of patients received SACT within 30 days of death. For the entire cohort, the mean delay between the last treatment and death was 94 days, and the median was 57 days. There were no statistically significant differences between the two groups in terms of baseline characteristics. Use of SACT near EOL was associated with decreased access to PC, higher rates of in hospital death, decreased use of medical aid in dying (MAiD), and a shorter median OS (4.0 vs. 9.0 months). Conclusions: In this retrospective cohort of patients with metastatic NSCLC, 22% of patients received SACT within 30 days of death, with a negative impact on access to PC, higher rates of in hospital death, decreased use of MAiD and palliative sedation, and a shorter median OS.
... Even with newer therapies, such as immunotherapy and targeted therapy, by nature of the patient's incurable disease, the importance of symptom management remains crucial [4,5]. Previous studies have demonstrated that lung cancer is associated with high symptom burden, which has strong implications on overall quality of life (QoL), caregiver burden, and health system resource utilization [6,7]. It has been reported that depression is common among patients with stage IV NSCLC owing to its inherent high symptom burden and low survival [8]. ...
Article
Background: In Ontario, Canada, patient reported outcomes (PRO) evaluation through Edmonton Symptom Assessment System (ESAS) has been integrated into clinical workflow since 2007. As stage IV non-small cell lung cancer (NSCLC) is associated with substantial disease and treatment-related morbidity, this province-wide study investigated moderate-to-severe symptom burden in this population. Methods: ESAS collected from stage IV NSCLC patients diagnosed between 2007-2018 linked to Ontario provincial healthcare system database were studied. ESAS acquired within 12 months following diagnosis were analyzed and the proportion reporting moderate-to-severe scores (ESAS ≥4) in each domain was calculated. Predictors of moderate-to-severe scores were identified using multivariable Poisson regression models with robust error variance. Results: Of 22,799 patients, 13,289 (58.3%) completed ESAS (84,373 assessments) in the year following diagnosis. Patients with older age, high comorbidity, and not receiving active cancer therapy had lower ESAS completion. Majority (94.4%) reported at least 1 moderate-to-severe symptoms. Most prevalent were tiredness (84.1%), low wellbeing (80.7%), low appetite (71.7%), and shortness of breath (67.8%). Most symptoms peaked at diagnosis, while declining, remained high in the following year. On multivariable analyses, comorbidity, low income, non-immigrants, and urban residency were associated with moderate-to-severe symptoms. Moderate-to-severe scores in all ESAS domains aside from anxiety were associated with radiotherapy within 2 weeks prior, while drowsiness, low appetite and wellbeing, nausea, and tiredness were associated with systemic therapy within 2 weeks prior. Conclusion: This province-wide PRO analysis showed moderate-to-severe symptoms were prevalent and persistent among metastatic NSCLC patients, underscoring the need to address supportive measures in this population especially around treatments. Implications for practice: This is the largest patient reported outcome (PRO) results among lung cancer patients worldwide. Our results demonstrated the worse moderate-to-severe symptoms among stage IV non-small cell lung cancer patients compared to other patients with metastatic, other malignancies such as breast, gastric, or esophageal cancers assessed with similar methodology. These patients symptom severity also peaked early, and persistently high during 1 year follow-up. Symptoms burden was also associated with recent radiation and systemic treatments. This emphasized the importance of early and sustained PRO collection to detect actionable symptom progression, especially around treatments. Moreover, PRO completion was lower among patients who were older, had higher comorbidity, and not receiving active cancer treatment; these were arguably more vulnerable patients who faced barrier to attend in-person clinic visit to complete PRO. We suggested PRO collection during virtual clinics improve completion.
... 20 Supportive home care was defined as one or a combination of physician house call for palliative care, end-of-life homecare nursing or end-of-life personal support at home. 21 Each outcome was handled as a binary variable (yes/no). ...
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Context The growing number of older people significantly affects end-of-life care. However, few studies have assessed the quality of end-of-life care among cancer patients with dementia. Objectives To assess the quality of end-of-life care among non-small cell lung cancer patients with or without dementia using a nationwide inpatient database from Japan. Methods This was a retrospective observational study that used a nationwide inpatient database of 366 acute care hospitals from April 2014 to November 2018. Poisson regression models were used where the quality indicator was the dependent variable, dementia status was the independent variable, and the age group and Charlson comorbidity index were covariates. Incidence proportion ratios (IPRs) and confidence intervals (CIs) were obtained from the model. Results The study population included 16,758 patients, of whom 4,507 (26.9%) had dementia. The incidence proportion of opioid use (61.8% vs. 70.8%; IPR: 0.87, 95% CI: 0.83–0.91), palliative care consultation (2.7% vs. 3.8%; IPR: 0.71, 95% CI: 0.58–0.88), mechanical ventilation (4.0% vs. 5.4%; IPR: 0.74, 95% CI: 0.62–0.87), and cardiopulmonary resuscitation (2.2% vs. 2.8%; IPR: 0.79, 95% CI: 0.63–0.99) was significantly lower in patients with dementia than in those without dementia. Conclusion Patients with dementia are less likely to receive end-of-life care. This study demonstrates the importance of providing high-quality end-of-life care regardless the cognitive status of patients with cancer.
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There has been an increasing interest in describing emergency department (ED) use by cancer patients at the end of life (EOL) over the past two decades. Patients, providers, and healthcare administrators have endorsed ED visits in the last weeks of life as an indicator of poor quality of EOL care. Depending on the patients studied, methods used for measurement, and window of observation, ED visits ranged from 1.5% having two or more ED visits in the last 30 days of life to 85% having an ED visit in the last 6 months of life. Most authors conclude that ED visits at EOL are occurring more frequently than is desirable. Common reasons for visits include worsening symptoms, progressive malignancy, and treatment-related toxicity. Factors associated with ED visits vary based on sex, age, and comorbidity. It is unrealistic to expect that no patient will ever visit the ED at the EOL; however, consistent and early use of comprehensive palliative care services is likely to decrease visits at EOL.
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We compared the management and outcome of glottic cancer in Ontario, Canada to that in the Surveillance, Epidemiology and End Results (SEER) Program areas in the United States to determine whether the greater use of primary radiotherapy with surgery reserved for salvage in Ontario was associated with similar survival and better larynx retention rates than the U.S. approach where primary surgery is used more often. Electronic, clinical and hospital data were linked to cancer registry data and supplemented by chart review where necessary. Initial treatment and survival in patients diagnosed in the SEER areas from 1988 through 1994 were compared to patients from Ontario diagnosed from 1982 through 1995. Actuarial laryngectomy rates were compared for patients over 65 at diagnosis in the two regions. Analyses were conducted over all cases and stratified by disease stage. In localized disease (T1 or T2), conservative treatment was the most common initial treatment in both regions, although total laryngectomy was used more often in SEER than Ontario (6.2% vs. 0.2%, respectively, P < .001). In advanced disease (T3 or T4), total laryngectomy was more commonly used as initial treatment in SEER (62.9% vs. 21.0% in Ontario, P ⩽ .001). Over all cases, the relative survival rate was 80% in Ontario at 5 years compared to 78% in SEER (P = .33). In localized disease, the relative survival rates were 4 to 5% higher in Ontario from the second year on, while in advanced disease 2 to 3% higher rates in SEER did not approach statistical significance. Actuarial laryngectomy rates at 3 years differed between the two regions, with a 4% higher rate in SEER (P = .01). In localized disease, 12.6% of Ontario patients had a laryngectomy by 3 years postdiagnosis compared to 17.9% in SEER (P = .05). In advanced disease, the rates were 63.3% and 79.2%, respectively (P = .07). There are large differences in the management of glottic cancer between the SEER areas of the U.S. and Ontario and no evidence that a policy emphasizing radiotherapy with surgery reserved for salvage is associated with worse survival. Ultimate laryngectomy rates are lower in Ontario for localized disease and may be lower for advanced disease. Conservation treatment should be used for localized disease while the treatment decision in advanced disease may be especially sensitive to patient values for voice retention versus initial cure.
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The objective of this study was to evaluate whether Ontario's End-of-Life Care Strategy, which aimed to shift care from acute settings to the home, improved performance on quality indicators for end-of-life home care patients in use of more home care services and fewer acute care services. The study cohort included patients at the end of life admitted into home care between April 1, 2005, and September 30, 2006, and who died before April 1, 2007. Based on their admission date, patients were divided into three six-month periods corresponding to the six months prior to the strategy's implementation compared with the 12 months after. Patients were excluded if they were admitted to home care more than six months prior to death. Average hours per week of nursing and personal support worker (PSW) services were measured for the last 12 weeks of life. The use of acute care services in the last month of life was measured by the proportion of patients who had an in-hospital death, had hospitalizations, visited the emergency department (ED) and spent more than 14 days in hospital. Among home care patients (n = 9,368), per-patient use of home care and acute care did not change significantly over the time periods. The pattern of average nursing and PSW hours per week used in the last 12 weeks of life did not change a year after the strategy implementation, averaging 3.8 nursing hours per week and 3.8 PSW hours per week over the study period. The proportion of in-hospital deaths remained stable at approximately 38% over the study period. Approximately 16% of patients had an ED visit and 32% had a hospitalization in the last two weeks of life across time periods. Similarly the proportion of patients who had zero, one or greater than one ED visit or hospitalization remained constant across time periods. In conclusion, one year after the strategy's implementation, individual patients' use of end-of-life home care and acute care services remained unchanged. The strategy may require more time for its impact to be fully achieved. Measuring these quality indicators across regions may help to monitor and evaluate interventions.
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Study Type - Health Economic (multiway sensitivity analyses) Level of Evidence 2b. To estimate the total healthcare costs and costs attributable to prostate cancer across all stages of disease, and to determine the predictors of those costs, as describing the cost of care for patients with prostate cancer is useful to understand the economic burden of illness, explore patterns of care, and provide reliable cost data for economic evaluations. We estimated direct medical costs for 42 484 men diagnosed with prostate cancer in Ontario, Canada between 1995 and 2002 using linked administrative data. The observation time was divided into five phases: (I) before diagnosis (6 months before); (II) initial care (12 months after diagnosis); (III) continuing care; (IV) pre-terminal care (from 18 to 6 months before death); and (V) terminal care (6 months before death). Attributable costs were estimated by comparing costs in cases to matched controls. The total direct costs per 100 days (in $Canadian, 2004) were: Phase I $1297; II $3289; III $1495; IV $5629; and V $16 020. Prostate cancer-attributable costs accounted for 72% of total costs in the 12-month period after diagnosis (II, $2366), but <35% of total costs in phases III to V ($398, $1977 and $3140, respectively). An advanced stage at diagnosis, being older at diagnosis, and higher comorbidity were associated with increased costs. Prostate cancer is associated with increased direct healthcare costs over the natural history of the disease. Costs are highest around two events, cancer diagnosis and cancer death. Future research should evaluate costs borne by private insurers and patients, evaluate the effects of patient and system variables on lifetime costs, and explore differences in end-of-life healthcare costs across countries.