Trajectories of medical care expenditure in the last year of life associated with long-term care utilization in frail older adults: A retrospective cohort study.

BACKGROUND: Medical care and long-term care utilization in the last year of life of frail older adults could be a key indicator of their quality of life. This study aimed to identify the medical care expenditure (MCE) trajectories in the last year of life of frail older adults by investigating the association between MCE and long-term care utilization in each trajectory. METHODS: The retrospective cohort study of three municipalities in Japan included 405 decedents (median age at death, 85 years; 189 women [46.7%]) from a cohort of 1,658 frail older adults aged ≥65 years who were newly certified as support level in the long-term care insurance program from April 2012 to March 2013. This study used long-term care and medical insurance claim data from April 2012 to March 2017. The primary outcome was MCE over the 12 months preceding death. Group-based trajectory modeling was conducted to identify the MCE trajectories. A mixed-effect model was employed to examine the association between long-term care utilization and MCE in each trajectory. RESULTS: Participants were stratified into four groups based on MCE trajectories over the 12 months preceding death as follows: rising (n = 159, 39.3%), persistently high (n = 143, 35.3%), minimal (n = 56, 13.8%), and descending (n = 47, 11.6%) groups. Home-based long-term care utilization was associated with increased MCE in the descending trajectory (coefficient, 1.48; 95% confidence interval [CI], 1.35-1.62). Facility-based long-term care utilization was associated with reduced MCE in the rising trajectory (coefficient, 0.59; 95% CI, 0.50-0.69). Both home-based (coefficient, 0.92; 95% CI, 0.85-0.99) and facility-based (coefficient; 0.53; 95% CI, 0.41-0.63) long-term care utilization were associated with reduced MCE in the persistently high trajectory. CONCLUSIONS: These findings may facilitate the integration of medical and long-term care models at the end of life in frail older adults.

Healthcare use and costs in the last six months of life by level of care and cause of death.

BACKGROUND: Existing knowledge on healthcare use and costs in the last months of life is often limited to one patient group (i.e., cancer patients) and one level of healthcare (i.e., secondary care). Consequently, decision-makers lack knowledge in order to make informed decisions about the allocation of healthcare resources for all patients. Our aim is to elaborate the understanding of resource use and costs in the last six months of life by describing healthcare use and costs for all causes of death and by all levels of formal care. METHOD: Using five national registers, we gained access to patient-level data for all individuals who died in Norway between 2009 and 2013. We described healthcare use and costs for all levels of formal care-namely primary, secondary, and home- and community-based care -in the last six months of life, both in total and differentiated across three time periods (6-4 months, 3-2 months, and 1-month before death). Our analysis covers all causes of death categorized in ten ICD-10 categories. RESULTS: During their last six months of life, individuals used an average of healthcare resources equivalent to €46,000, ranging from €32,000 (Injuries) to €64,000 (Diseases of the nervous system and sense organs). In terms of care level, 63% of healthcare resources were used in home- and community-based care (i.e., in-home nursing, practical assistance, or nursing home care), 35% in secondary care (mostly hospital care), and 2% in primary care (i.e., general practitioners). The amount and level of care varied by cause of death and by time to death. The proportion of home- and community-based care which individuals received during their last six months of life varied from 38% for cancer patients to 92% for individuals dying with mental diseases. The shorter the time to death, the more resources were needed: nearly 40% of all end-of-life healthcare costs were expended in the last month of life across all causes of death. The composition of care also differed depending on age. Individuals aged 80 years and older used more home- and community-based care (77%) than individuals dying at younger ages (40%) and less secondary care (old: 21% versus young: 57%). CONCLUSIONS: Our analysis provides valuable evidence on how much healthcare individuals receive in their last six months of life and the associated costs, broken down by level of care and cause of death. Healthcare use and costs varied considerably by cause of death, but were generally higher the closer a person was to death. Our findings enable decision-makers to make more informed resource-allocation decisions and healthcare planners to better anticipate future healthcare needs.

Estimating the Costs of End-of-Life Care in Patients With Advanced Cancer From the Perspective of an Insurance Organization: A Cross-Sectional Study in Iran.

OBJECTIVES: Cancers are significant medical conditions that contribute to the rising costs of healthcare systems and chronic diseases. This study aimed to estimate the average costs of medical services provided to patients with advanced cancers at the end of life (EOL). METHODS: We analyzed data from the Sata insurance claim database and the Health Information System of Baqiyatallah hospital in Iran. The study included all adult decedents who had advanced cancer without comorbidities, died between March 2020 and September 2020, and had a history of hospitalization in the hospital. We calculated the average total cost of healthcare services per patient during the EOL period, including both cancer-related and noncancer-related costs. RESULTS: A total of 220 patients met the inclusion criteria. The average duration of the EOL period for these patients was 178 days, with an average total cost of $8278 (SD $5698) for men and $9396 (SD $6593) for women. Cancer-related costs accounted for 64.42% of the total costs, including inpatient and outpatient services. Among these costs, hospitalization was the primary cost driver and had the greatest impact on EOL costs. This observation was supported by the multiple linear regression model, which suggested that hospitalization in the final days of life could potentially drive costs in these patients. Notably, no specialized palliative care was provided to the patients included in this study. CONCLUSIONS: The results demonstrate that there is a significant rise in costs of care in patients receiving routine cancer care rather than optimized EOL care.

Disparities in healthcare expenditures according to economic status in cancer patients undergoing end-of-life care.

BACKGROUNDS: A desire for better outcome influences cancer patients' willingness to pay. Whilst cancer-related costs are known to have a u-shaped distribution, the actual level of healthcare utilized by patients may vary depending on income and ability to pay. This study examined patterns of healthcare expenditures in the last year of life in patients with gastric, colorectal, lung, and liver cancer and analyzed whether differences exist in the level of end-of-life costs for cancer care according to economic status. METHODS: This study is a retrospective cohort study which used data from the Korean National Elderly Sampled Cohort, 2002 to 2015. End-of-life was defined as 1 year before death. Economic status was classified into three categorical variables according to the level of insurance premium (quantiles). The relationship between the dependent and independent variables were analyzed using multiple gamma regression based on the generalized estimated equation (GEE) model. RESULTS: This study included 3083 cancer patients, in which total healthcare expenditure was highest in the high-income group. End-of-life costs increased the most in the last 3 months of life. Compared to individuals in the 'middle' economic status group, those in the 'high' economic status group (RR 1.095, 95% CI 1.044-1.149) were likely to spend higher amounts. The percentage of individuals visiting a general hospital was highest in the 'high' economic status group, followed by the 'middle' and 'low' economic status groups. CONCLUSION: Healthcare costs for cancer care increased at end-of-life in Korea. Patients of higher economic status tended to spender higher amounts of end-of-life costs for cancer care. Further in-depth studies are needed considering that end-of-life medical costs constitute a large proportion of overall expenditures. This study offers insight by showing that expenditures for cancer care tend to increase noticeably in the last 3 months of life and that differences exist in the amount spent according economic status.

Disparities in Care Management During Terminal Hospitalization Among Adults With Metastatic Cancer From 2010 to 2017.

Importance: Many patients with metastatic cancer receive high-cost, low-value care near the end of life. Identifying patients with a high likelihood of receiving low-value care is an important step to improve appropriate end-of-life care. Objective: To analyze patterns of care and interventions during terminal hospitalizations and examine whether care management is associated with sociodemographic status among adult patients with metastatic cancer at the end of life. Design, Setting, and Participants: This retrospective, population-based cross-sectional study used data from the Healthcare Cost and Utilization Project to analyze all-payer, encounter-level information from multiple inpatient centers in the US. All utilization and hospital charge records from national inpatient sample data sets between January 1, 2010, and December 31, 2017 (n = 58 761 097), were screened. The final cohort included 21 335 patients 18 years and older at inpatient admission who had a principal diagnosis of metastatic cancer and died during hospitalization. Data for the current study were analyzed from January 1, 2010, to December 31, 2017. Exposures: Patient demographic characteristics, patient insurance status, hospital location, and hospital teaching status. Main Outcomes and Measures: Receipt of systemic therapy (including chemotherapy and immunotherapy), receipt of invasive mechanical ventilation, emergency department (ED) admission, time from hospital admission to death, and total charges during a terminal hospitalization. Results: Among 21 335 patients with metastatic cancer who had terminal hospitalizations between 2010 and 2017, the median age was 65 years (interquartile range, 56-75 years); 54.0% of patients were female; 0.5% were American Indian, 3.3% were Asian or Pacific Islander, 14.1% were Black, 7.5% were Hispanic, 65.9% were White, and 3.1% were identified as other; 58.2% were insured by Medicare or Medicaid, and 33.2% were privately insured. Overall, 63.2% of patients were admitted from the ED, 4.6% received systemic therapy, and 19.2% received invasive mechanical ventilation during hospitalization. Racial and ethnic minority patients had a higher likelihood of being admitted from the ED (Asian or Pacific Islander patients: odds ratio [OR], 1.43 [95% CI, 1.20-1.72]; P < .001; Black patients: OR, 1.39 [95% CI, 1.27-1.52]; P < .001; and Hispanic patients: OR, 1.45 [95% CI, 1.28-1.64]; P < .001), receiving invasive mechanical ventilation (Black patients: OR, 1.59 [95% CI, 1.44-1.75]; P < .001), and incurring higher total charges (Asian or Pacific Islander patients: OR, 1.35 [95% CI, 1.13-1.60]; P = .001; Black patients: OR, 1.23 [95% CI, 1.13-1.34]; P < .001; and Hispanic patients: OR, 1.50 [95% CI, 1.34-1.69]; P < .001) compared with White patients. Privately insured patients had a lower likelihood of being admitted from the ED (OR, 0.47 [95% CI, 0.44-0.51]; P < .001), receiving invasive mechanical ventilation (OR, 0.75 [95% CI, 0.69-0.82]; P < .001), and incurring higher total charges (OR, 0.64 [95% CI, 0.59-0.68]; P < .001) compared with Medicare and Medicaid beneficiaries. Conclusions and Relevance: In this study, patients with metastatic cancer from racial and ethnic minority groups and those with Medicare or Medicaid coverage were more likely to receive low-value, aggressive interventions at the end of life. Further studies are needed to evaluate the underlying factors associated with disparities at the end of life to implement prospective interventions.

International comparison of spending and utilization at the end of life for hip fracture patients.

OBJECTIVE: To identify and explore differences in spending and utilization of key health services at the end of life among hip fracture patients across seven developed countries. DATA SOURCES: Individual-level claims data from the inpatient and outpatient health care sectors compiled by the International Collaborative on Costs, Outcomes, and Needs in Care (ICCONIC). STUDY DESIGN: We retrospectively analyzed utilization and spending from acute hospital care, emergency department, outpatient primary care and specialty physician visits, and outpatient drugs. Patterns of spending and utilization were compared in the last 30, 90, and 180 days across Australia, Canada, England, Germany, New Zealand, Spain, and the United States. We employed linear regression models to measure age- and sex-specific effects within and across countries. In addition, we analyzed hospital-centricity, that is, the days spent in hospital and site of death. DATA COLLECTION/EXTRACTION METHODS: We identified patients who sustained a hip fracture in 2016 and died within 12 months from date of admission. PRINCIPAL FINDINGS: Resource use, costs, and the proportion of deaths in hospital showed large variability being high in England and Spain, while low in New Zealand. Days in hospital significantly decreased with increasing age in Canada, Germany, Spain, and the United States. Hospital spending near date of death was significantly lower for women in Canada, Germany, and the United States. The age gradient and the sex effect were less pronounced in utilization and spending of emergency care, outpatient care, and drugs. CONCLUSIONS: Across seven countries, we find important variations in end-of-life care for patients who sustained a hip fracture, with some differences explained by sex and age. Our work sheds important insights that may help ongoing health policy discussions on equity, efficiency, and reimbursement in health care systems.

Health expenditures after first hospital admission for heart failure in Nova Scotia, Canada: a retrospective cohort study.

BACKGROUND: Although the frequency of heart failure makes it among the costliest of illnesses, there are scant Canadian data on annual costs of treatment or the costs as the condition advances. Our objective was to estimate mean prevalence- and incidence-based direct medical costs among older adults discharged alive after a first hospital admission for heart failure. METHODS: We conducted a retrospective cohort study using population-based administrative health databases for Nova Scotia. The cohort comprised persons 50 years of age or older with an incident hospital admission for heart failure between 2009 and 2012. We considered the costs (expressed as 2020 Canadian dollars) of hospital admissions, physician visits and, for patients 65 years of age or older, outpatient cardiac medications. We estimated costs for calendar years, longitudinally and in the last 2 years of life. We analyzed costs from the perspective of a third-party public payer. RESULTS: The cohort consisted of 3327 patients (mean age 77.6 yr; 1605 [48.2%] women). Median survival was 2.5 and 2.2 years among men and women, respectively. Annual prevalence-based costs were about $7100. Mean incidence-based costs ranged between $65 000 and $164 000 in the year after diagnosis and decreased by 90% subsequently. Costs were 4 to 7 times higher in the year before death than in the period from 1 to 2 years before death. INTERPRETATION: The direct medical costs of treating patients with heart failure in Nova Scotia displayed a reverse J shape, with costs highest after diagnosis, declining subsequently and then increasing during the final year of life. Strategies designed to improve the quality of care immediately after diagnosis and during more advanced stages of disease might reduce these costs.

Dying with dementia in Medicare Advantage, Accountable Care Organizations, or traditional Medicare.

BACKGROUND/OBJECTIVE: Medicare Advantage (MA) and Accountable Care Organizations (ACOs) operate under incentives to reduce burdensome and costly care at the end of life. We compared end-of-life care for persons with dementia who are in MA, ACOs, or traditional Medicare (TM). DESIGN, SETTING, AND PARTICIPANTS: Retrospective study of decedents with dementia enrolled in MA, attributed to an ACO, or in TM. Decedents had a nursing home stay between 91 and 180 days prior to death, two or more functional impairments, and mild to severe cognitive impairment. MEASUREMENTS: Hospitalization, invasive mechanical ventilation (IMV) use, and in-hospital death in the last 30 days of life reported in Medicare billing. RESULTS: Among 370,094 persons with dementia, 93,801 (25.4%) were in MA (mean age [SD], 86.9 [7.7], 67.6% female), 39,586 (10.7%) were ACO attributed (mean age [SD], 87.2 [7.6], 67.3% female), and 236,707 (63.9%) were in TM (mean age [SD], 87.0 [7.8], 67.6% female). The proportion hospitalized in the last 30 days of life was higher among TM enrollees (27.9%) and those ACO attributed (28.1%) than among MA enrollees (20.5%, p ≤ 0.001). After adjustment for socio-demographics, cognitive and functional impairments, comorbidities, and Hospital Referral Region, adjusted odds of hospitalization in the 30 days prior to death was 0.72 (95% confidence interval [CI] 0.70-0.74) among MA enrollees and 1.05 (95% CI 1.02-1.09) among those attributed to ACOs relative to TM enrollees. Relative to TM, the adjusted odds of death in the hospital were 0.78 (95% CI 0.75-0.81) among MA enrollees and 1.02 (95% CI 0.96-1.08) for ACO participants. Dementia decedents in MA had a lower likelihood of IMV use (adjusted odds ratio 0.80, 95% CI 0.75-0.85) compared to TM. CONCLUSIONS: Among decedents with dementia, MA enrollees but not decedents in ACOs experienced less costly and potentially burdensome care compared with those with TM. Policy changes are needed for ACOs.

Systemic therapy, survival and end-of-life costs for metastatic triple-negative breast cancer: retrospective SEER-Medicare study of women age ≥65 years.

Aim: To analyze therapy for metastatic triple-negative breast cancer (mTNBC), factors contributing to survival and costs. Patients & methods: Using 2010-2016 SEER-Medicare data, we identified women (≥65 years) with mTNBC. Results: Of 302 eligible patients, 152 (50%) received systemic therapy. In multivariable regression analyses, only age <75 years was associated with therapy receipt (odds ratio: 2.91; 95% CI: 1.79-4.74); and only systemic therapy significantly reduced risk of death (hazard ratio: 0.34; 95% CI: 0.26-0.44). Median overall survival was 13.4 (95% CI: 11.3-15.1) vs 3.3 months (95% CI: 2.7-3.9) in therapy vs no-therapy cohorts. Mean per-patient-per-month costs <30 days before end-of-life/follow-up were $14,100 and $15,600 (2019 USD), respectively. Conclusion: Poor outcomes and high costs indicate need for more effective mTNBC therapy.

End-of-life patterns of symptom management and cancer-directed care among Medicare beneficiaries with lung cancer: a claims-based analysis.

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.

End-of-Life Cost Trajectories in Cancer Patients Treated by Medicare versus the Veterans Health Administration.

BACKGROUND/OBJECTIVES: To evaluate differences in end-of-life cost trajectories for cancer patients treated through Medicare versus by the Veterans Health Administration (VA). DESIGN: A retrospective analysis of VA and Medicare administrative data from FY 2010 to 2014. We employed three-level generalized estimating equations to evaluate monthly cost trajectories experienced by patients in their last year of life, with patients nested within hospital referral region. SETTING: Care received at VA facilities or by Medicare-reimbursed providers nationwide. PARTICIPANTS: A total of 36,401 patients dying from cancer and dually enrolled in VA and Medicare. MEASUREMENTS: We evaluated trajectories for total, inpatient, outpatient, and drug costs, using the last 12 months of life. Cost trajectories were prioritized as costs are not directly comparable across Medicare and VA. Patients were assigned to be VA-reliant, Medicare-reliant or Mixed-reliant based on their healthcare utilization in the last year of life. RESULTS: All three groups experienced significantly different cost trajectories for total costs in the last year of life. Inpatient cost trajectories were significantly different between Medicare-reliant and VA-reliant patients, but did not differ between VA-reliant and Mixed-reliant patients. Outpatient and drug cost trajectories exhibited the inverse pattern: they were significantly different between VA-reliant and Mixed-reliant patients, but not between VA-reliant and Medicare-reliant patients. However, visual examination of cost trajectories revealed similar cost patterns in the last year of life among all three groups; there was a sharp rise in costs as patients approach death, largely due to inpatient care. CONCLUSION: Despite substantially different financial incentives and organization, VA- and Medicare-treated patients exhibit similar patterns of increasing end-of-life costs, largely driven by inpatient costs. Both systems require improvement to ensure quality of end-of-life care is aligned with recommended practice.

The challenge of sustainability in healthcare systems: cost of radiotherapy in the last month of life in an Italian cancer center.

PURPOSE: Cost evaluation is becoming mandatory to support healthcare sustainability and optimize the decision-making process. This topic is a challenge, especially for complex and rapidly evolving treatment modalities such as radiotherapy (RT). The aim of the present study was to investigate the cost of RT in the last month of life of patients in an Italian cancer center. METHODS: This was a retrospective study on a cancer population (N= 160) who underwent RT or only an RT planning simulation in an end of life (EOL) setting. The cost of RT procedures performed on patients was collected according to treatment status, care setting, and RT technique used. Costs were valued according to the sum of reimbursements relating to all procedures performed and assessed from the perspective of the National Health System. RESULTS: The total cost of RT in the last month of life was €244,774, with an average cost per patient of €1530. Around 7.7% and 30.3% of the total cost was associated with patients who never started RT or who discontinued RT, respectively, while the remaining 62.0% referred to patients who completed treatment. Costs associated with outpatient and inpatient settings represented 54.3% and 38.6% of the total cost, respectively. The higher average cost per patient for the never-started and discontinued groups was correlated with patients who had a poor ECOG Performance Status. CONCLUSION: Improved prognostic accuracy and a better integration between radiotherapy and palliative care units could be a key to a better use of resources and to a reduction in the cost of EOL RT.

Factors Associated With Aggressiveness of End-of-Life Care for Lung Cancer Patients and Associated Costs of Care.

BACKGROUND: Results of previous studies demonstrated that high-intensity end-of-life (EOL) care improves neither cancer patients' survival nor quality of life. Our objective was to assess the incidence of and factors associated with aggressiveness of care during the last 30 days of life (DOL) of lung cancer (LC) patients and the impacts of aggressiveness of care in EOL-care costs. PATIENTS AND METHODS: Using French national hospital database, all patients with LC who died between January 1, 2010, and December 31, 2011, or between January 1, 2015, and January 31, 2016, were included. EOL-care aggressiveness was assessed using the following criteria: chemotherapy administered within the last 14 DOL; more than one hospitalization within the last 30 DOL; admission to the intensive care unit within the last 30 DOL; and palliative care initiated < 3 days before death. Expenditures were limited to direct costs, from a health care payer's perspective. RESULTS: Among 79,746 adult LC patients identified; 57% had at least one indicator of EOL-care aggressiveness (49% repeated hospitalizations, 12% intensive care unit admissions, 9% chemotherapy, 5% palliative care). It increased significantly between the 2 periods (56% vs. 58%, P < .001). Young age, male sex, shorter time since diagnosis, comorbidities, no malnutrition, type of care facility other than general hospital, social deprivation, and low-density population were independently associated with having one or more indicator of aggressive EOL care. The mean EOL cost was €8152 ± 5117 per patient, but the cost was significantly higher for patients with at least one EOL-care aggressiveness criterion (€9480 vs. €6376, P < .001). CONCLUSION: In France, a majority of LC patients had at least one criterion of aggressive EOL care that had a major economic impact on the health care system.

Intensity of Care, Expenditure, and Place of Death in French Women in the Year Before Their Death From Breast Cancer: A Population-Based Study.

Health care utilization of women with breast cancer (BC) during the last year of life, together with the causes and place of death and associated expenditure have been poorly described. Women treated for BC (2014-2015) with BC as a cause of death in 2015 and covered by the national health insurance general scheme (77% of the population) were identified in the French health data system (n = 6,696, mean age: 68.7 years, SD ± 15). Almost 70% died in short-stay hospitals (SSH), 4% in hospital-at-home (HaH), 9% in Rehab, 5% in skilled nursing homes (SNH) and 12% at home. One-third presented cardiovascular comorbidity. During the last year, 90% were hospitalized at least once in SSH, 25% in Rehab, 13% in HaH and 71% received hospital palliative care (HPC), but only 5% prior to their end-of-life stay. During the last month, 85% of women were admitted at least once to a SSH, 42% via the emergency department, 10% to an ICU, 24% received inpatient chemotherapy and 18% received outpatient chemotherapy. Among the 83% of women who died in hospital, independent factors for HPC use were cardiovascular comorbidity (adjusted odds ratio, aOR: 0.83; 95%CI: 0.72-0.95) and, in the 30 days before death, at least one SNH stay (aOR: 0.52; 95%CI: 0.36-0.76), ICU stay (aOR: 0.36; 95%CI: 0.30-0.43), inpatient chemotherapy (aOR: 0.55; 95%CI: 0.48-0.63), outpatient chemotherapy (aOR: 0.60; 95%CI: 0.51-0.70), death in Rehab (aOR: 1.4; 95%CI: 1.05-1.86) or HAH (aOR: 4.5; 95%CI: 2.47-8.1) vs SSH. Overall mean expenditure reimbursed per woman was €38,734 and €42,209 for those with PC. Women with inpatient or outpatient chemotherapy during the last month had lower rates of HPC, suggesting declining use of HPC before death. This study also indicates SSH-centered management with increased use of HPC in HaH and Rehab units and decreased access to HPC in SNH.

The Cost of Visit-based Home Care for up to Two Weeks in the Last Three Months of Life: APilot Study of Community Care Based at a Hospice-at-home Service in South East of England.

The cost of visit-based community care based around a 24/7 hospice-at-home (HatH) service in the last 3 months of life was assessed. Thirty families completed a health and social carediary of at-home visits over two-weeks following contact with the HatH night service. Diaries captured 333 days of care provision, averaging 11 diary days per family, 708 health care professional and carer visits, lasting 604 hours at a cost of £20,192 ($24,946). Hat H care, integrated with community support, seems an economic proposition but highlights the complexities of assessing cost of end of life care.

Associations between informal care costs, care quality, carer rewards, burden and subsequent grief: the international, access, rights and empowerment mortality follow-back study of the last 3 months of life (IARE I study).

BACKGROUND: At the end of life, formal care costs are high. Informal care (IC) costs, and their effects on outcomes, are not known. This study aimed to determine the IC costs for older adults in the last 3 months of life, and their relationships with outcomes, adjusting for care quality. METHODS: Mortality follow-back postal survey. SETTING: Palliative care services in England (London), Ireland (Dublin) and the USA (New York, San Francisco). PARTICIPANTS: Informal carers (ICrs) of decedents who had received palliative care. DATA: ICrs reported hours and activities, care quality, positive aspects and burdens of caregiving, and completed the Texas Revised Inventory of Grief (TRIG). ANALYSIS: All costs (formal, informal) were calculated by multiplying reported hours of activities by country-specific costs for that activity. IC costs used country-specific shadow prices, e.g. average hourly wages and unit costs for nursing care. Multivariable logistic regression analysis explored the association of potential explanatory variables, including IC costs and care quality, on three outcomes: positive aspects and burdens of caregiving, and subsequent grief. RESULTS: We received 767 completed surveys, 245 from London, 282 Dublin, 131 New York and 109 San Francisco. Most respondents were women (70%); average age was 60 years. On average, patients received 66-76 h per week from ICrs for 'being on call', 52-55 h for ICrs being with them, 19-21 h for personal care, 17-21 h for household tasks, 15-18 h for medical procedures and 7-10 h for appointments. Mean (SD) IC costs were as follows: USA $32,468 (28,578), England $36,170 (31,104) and Ireland $43,760 (36,930). IC costs accounted for 58% of total (formal plus informal) costs. Higher IC costs were associated with less grief and more positive perspectives of caregiving. Poor home care was associated with greater caregiver burden. CONCLUSIONS: Costs to informal carers are larger than those to formal care services for people in the last three months of life. If well supported ICrs can play a role in providing care, and this can be done without detriment to them, providing that they are helped. Improving community palliative care and informal carer support should be a focus for future investment.