Place of death associated with types of long-term care services near the end-of-life for home-dwelling older people in Japan: a pooled cross-sectional study

The Japanese government introduced the Long-Term Care Insurance (LTCI) in 2000 in the form of a social insurance system with compulsory participation. LTCI provides LTC services through in-kind benefits to those aged 40 years and above with intractable disease and those aged 65 years and above when they are eligible for receiving care. The copayment for using LTC services is between 10 and 30% of expenditures, and the proportion of copayment is decided by the care recipients’ income [18]. The upper limit of recipients’ budget is set according to the seven stages of degree of care needed. It includes two stages that require support for the instrumental activities of daily living (IADL) (support levels 1 and 2) and five that require LTC for activities of daily living (ADL) (care levels 1–5) (a higher level indicates a higher need for care) [19]. When those who wish to receive LTCI apply to their municipal government, a qualified surveyor conducts an on-site survey consisting of 73 survey items to analyze the physical and cognitive functioning of the applicants. By referring to the results of an objective, computer-assisted evaluation from the surveyor’s findings and the opinion of a physician in charge, The Needs Assessment Review Committee, which consists of approximately five health and welfare professionals, decides the degree of care needed for each applicant [20].

Japan’s LTC services are roughly divided into two categories according to the place where service-recipients live. One category is services for home-dwelling recipients, which include (i) in-home services for care, nursing, medical support, bathing, rehabilitation, and renting of welfare equipment such as wheelchairs and care beds; (ii) day services for care and rehabilitation; and (iii) short-stay services for care and care with medical services. The other category covers services for residents at LTC facilities and qualified nursing homes. A trained and qualified care manager in charge coordinates what kind of LTC services should be used and are applicable for each beneficiary in the upper budget of each stage, in consultation with care recipients and their families. Table 1 shows the primary service providers, places, and types of services [21‐28]. In Japan, the qualifications of physicians, nurses, pharmacists, therapists, dieticians, dentists, and dental hygienists among the service providers in Table 1 are regulated by healthcare laws. By contrast, care workers and specialized consultees for renting welfare equipment, who also played a major role in the provision of LTC services, are subject to LTC-related laws. Care workers differ from medical professionals, such as nurses, in that they are not necessarily required to obtain any special qualifications, although they are encouraged to take initial training.

Terminally ill older people with medical needs can also use the outpatient, inpatient, and in-home medical care that is provided by hospitals and clinics, which is covered by universal social health insurance in Japan. Although when physicians order a visit based on the severity and urgency of a patient’s condition, nurses can provide in-home medical care for the short-term under health insurance, regular in-home care by nurses is preferentially covered by LTCI. In addition, although admission to palliative care beds is covered by health insurance, only 0.4% of all beds in Japan were registered as palliative care beds in 2013 [29, 30]. Therefore, older people are likely to end their lives in hospitals, but in other types of beds.

A pooled cross-sectional study around the time of the participants’ death was deployed. The participants included LTCI beneficiaries in Japan, aged 65 years and above, who had passed away between January 2008 and December 2013, excluding those whose deaths were caused by external factors and individuals who used residential and municipality-based services at their time of death. The details of these exclusion conditions are described as follows.

With the official approval to use the secondary data from the Statistics and Information Department of the Ministry of Health, Labour and Welfare (MHLW) under approval number 1130–1, we utilized the individual data from the Survey of Long-term Care Benefit Expenditures and the death records from the Vital Statistics of Japan for the years between 2006 and 2017 [31]. The Survey of Long-Term Care Benefit Expenditures records monthly panel data regarding the eligibility period, month and year of birth, gender, degree of care needs, LTC service usage, and living municipal codes of LTCI beneficiaries throughout Japan. The death records in the Vital Statistics database are built using the death certificates issued by physicians across the country, wherein the following data are recorded: age of death, gender, month and year of birth, presence of spouse at death, underlying cause of death, place of death, date of death, and living municipal code. We linked both these administrative databases by a deterministic linkage, using four items of demographic data to identify death for each LTCI beneficiary; municipality of residence, gender, month and year of birth, and date of death (as all individual data were anonymized by the MHLW, we could not identify a specific individual by a common variable). Although the date of death is not included in the survey of Long-Term Care Benefit Expenditures, the eligibility for LTCI expires exactly 1 day after the date of death on the death certificate. Thus, we matched the data indicating the date of the recipients’ death to 1 day before LTCI eligibility expiry. We first extracted 7,367,009 participants with expired LTCI eligibility and 14,701,083 who passed away in Japan from 2006 to 2017. Among them, we excluded 2.7% of participants with expired LTCI eligibility in the Survey of Long-term Care Benefit Expenditures and 0.3% of participants who passed away in the death records, as the four identification variables were overlapped owing to the lack of the patient’s exact date of birth. Then, we conducted the deterministic linkage, and 16.2% of those with expired LTCI eligibility that were unmatched were excluded from the analysis as those who moved to other municipalities. During the study period (January 2008–December 2013), the remaining 2,887,396 participants were considered to be LTCI beneficiaries aged 65 years and older who had passed away.

We excluded 84,426 recipients who died owing to external factors such as by accident or suicide (V01-Y89 on the International Classification of Diseases 10 (2003)) because the home deaths envisioned by many older people were not considered to be caused by such an underlying cause of death. In addition, we excluded 666,897 residents of residential services covered by LTCI during/in the month of death because the LTCI system mandates that only recipients with a high degree of care needed can enter LTC facilities and that most LTC services for home-dwelling recipients cannot be used while a recipient is in LTC facilities. Moreover, the residents were not analytically comparable because less than 1% of them died at home. Ninety-nine thousand and four hundred and twenty-four users of municipality-based services, which were provided by each municipality at its own discretion since 2006, were excluded because of the limited number of provider offices during the study period and the heterogeneity of the services provided between municipalities. Although no missing values could be attributed to the administrative data, there were 992 recipients with unknown codes indicating the beneficiaries’ degree of care needed and the presence of a spouse at the time of death. These recipients were also excluded from the study. Finally, we analyzed the remaining 2,035,657 participants that could use LTC services for home-dwelling recipients. We assumed that these participants needed care and died during the study period because Japan’s LTCI requires compulsory participation and older people can use LTC services after the determination of the degree of care needed whenever they require care.

The primary outcome was an indicator of home deaths of recipients as identified from the Vital Statistics data. Other places of death included hospitals, clinics with beds, LTC facilities, nursing homes, and others such as day services’ facilities or outdoors.

The chief exposures were indicators of whether a participant used each type of LTC services for home-dwelling recipients, namely, (i) in-home service, (ii) day service, and/or (iii) short-stay service, at least once during/in the month of death and their interaction terms. Moreover, to explore the association between the items of each type of LTC service for home-dwelling recipients with home deaths, we used each detailed LTC service explained in Table 1, including (i) in-home services for care, nursing, medical support, bathing, rehabilitation, and renting welfare equipment, (ii) day services for care and rehabilitation, and (iii) short-stay services for care and care with medical services, during/in the month of death.

Referring to the determinants of place of death found in previous studies, [10‐12] we adjusted the following covariates: the recipients’ age at the time of death; gender; presence of spouse (presence, unmarried, bereavement, and divorce); underlying cause of death (cancer (C00-C97), cerebrovascular disease (I60-I69), cardiovascular disease (I01, I020, I05-I09, I20-I25, I27, and I30-I52), senility (R54), and pneumonia (J12-J18)); year of death; degree of care needed; and dummy variables of secondary medical areas.

The underlying cause of death rested on the International Classification of Diseases 10th Revision (2003) [32]. We used dummy variables for degree of care needed and divided them into the following three categories: a low degree, including levels 1 and 2 requiring IADL support; a moderate degree, including levels 1 and 2 requiring support for a part of the ADL, and the high degree, including levels 3 through 5 requiring support for all ADLs [14]. Secondary medical areas are defined by the Japanese government to ensure patient access to inpatient services. Most of them are formed from adjacent municipalities. We assumed that the adjustments in the dummy variables of secondary medical areas would resolve the effect of recipients’ residences, such as the difference of availabilities of hospitals, clinics, LTC facilities, or nursing homes.

We conducted a Poisson regression analysis with robust standard errors (SE), instead of logistic regression analysis because the probability of home deaths—the outcome of this study—was predicted not to be low enough to regard the odds ratios as approximately equal to the incident rate ratios [33]. The incident rate ratio (IRR), robust SE, p-value, and 95% confidential interval (CI) were shown. The probabilities of home deaths with the use of each type of LTC services for home-dwelling recipients were calculated with delta-method SE using the models derived from the Poisson regression [34]. All data management and analyses were conducted using Stata 15 MP (College Station, TX; StataCorp LLC.). We considered a p-value < 0.05 to be statistically significant.

This research was conducted with permission from the Ethics Review Committees of the University of Tokyo (Approval No. 11070–2) and the University of Tsukuba (Approval No. 1324).

This study assessed the association between the use of each type of LTC service for home-dwelling recipients, including their combined use, during/in the month of death and the recipients’ place of death. The use of every type of LTC service for home-dwelling recipients was positively associated with the recipients’ home death. These results suggest the important role of LTC service for home-dwelling recipients for supporting care recipients who wish to stay at home until their death as well as their informal caregivers. Moreover, those who received day services or short-stay services with in-home services shortly before their deaths were more likely to die at home as compared to those who used only day or short-stay services. Additionally, we discovered a heterogeneous association between the items within each type of LTC service for home-dwelling recipients and the probability of home death. Given the large gap between the ideal and reality as regards the place of death (i.e., at home versus at the hospital), our findings have many implications for how physicians, nurses, and care workers coordinate LTC services for home-dwelling recipients for older people who wish to stay at home until death.

There are some potential mechanisms through which the use of LTC services for home-dwelling recipients is associated with an increased probability of continuing care at home until death. First, the use of LTC services for home-dwelling recipients such as in-home services and day services may lead to a reduction in the psychological caregiving burden of recipients’ families and can help care recipients feel more secure and confident about their lives, by providing physical assistance with their ADL and IADL [35‐39]. Second, as suggested in previous studies, LTC services for home-dwelling recipients such as day services and short-stay services—especially for patients with dementia and their caregivers—may sustain their cognitive function and improve their behavioral and psychological symptoms, which would enable them to live at home for a longer time [40‐42]. Third, using formal LTC services for home-dwelling recipients may indicate that care recipients who wish to stay at home until death are taken care by informal caregivers because formal LTC services for home-dwelling recipients are often used to complement informal care, although the dummy variables of the presence of a spouse were adjusted. Conversely, if older persons are living alone, they will be less likely to use respite care services such as short-stay services. Living together with informal caregivers should be a significant driver of staying at home until death.

The association of short-stay services uses with home deaths might reflect complicated situations. On the one hand, short-stay services have been used as alternatives to hospitalization and residential services in Japan when hospital beds are unavailable and facility capacity is full [43‐45]. In such cases, the recipients and their families wish to leave home. On the other hand, short-stay services, as a form of respite care, have reduced the care burden or psychological distress of caregivers [41, 46, 47]. A study in Australia reported that short-stay services improved the behavioral and psychological symptoms of dementia patients, [48] though the effectiveness of Japan’s short-stay services on recipients is yet unknown. Thus, our estimates for short-stay services might be contaminated by these mechanisms that have the opposite effects.

Furthermore, we found that people who received day or short-stay services with in-home services shortly before death were more likely to stay at home until death as compared to those who used only day or short-stay services. This might be because in-home services are essential for older adults who need support to live at home until death, even though day or short-stay services can give care recipients a chance of social activity and maintain their physical and psychological condition.

Moreover, we reported a heterogeneous association between the items of each type of LTC service for home-dwelling recipients with the probability of home death. The results suggest that the necessity of the items within each LTC service type for home-dwelling recipients is diverse for care recipients and their caregivers staying at home until death.

Several reviews have focused on the effects of the use of LTC services for home-dwelling recipients on care recipients’ ADL and caregiver burden [41, 49]. However, few studies on the association between the use of numerous LTC service types for home-dwelling recipients by care workers and place of death have been published despite the large gap between where dying people wish to stay until death and the place where they actually die. Most earlier studies have reported a positive association between in-home services provided by physicians and nurses with home deaths in Canada, Denmark, Japan, Taiwan, the United Kingdom, and the United States [10‐13]; however, they did not examine the association between in-home services, day services, and short-stay services provided by non-medical professionals and the place of death regardless of the fact that medical care alone cannot reduce the family burden. Most recently, a research demonstrated a positive association between in-home service for care provided by care workers and home death, although it did not focus on LTC services for home-dwelling recipients other than in-home care services [14]. On the contrary, our study comprehensively examined the association of various LTC service types for home-dwelling recipients by non-medical care workers, including the combined use of such services, with the recipients’ home death. Moreover, we investigated the association of the items of each LTC service type for home-dwelling recipients and place of death for the first time, to our knowledge.

There were several limitations to the study. First, in the data management, the deterministic linkage with four identification variables was conducted to merge the Survey of Long-term Care Benefit Expenditures with the death records from Vital Statistics of Japan. Thus, there might be a possibility of false matching. In this study, as these administrative surveys included large population, a few missing variables, and a few misclassified identification variables, the deterministic linkage between them should have a high proportion of exact matches [50]. If the common variable at the individual level between two surveys is added in the future, we could conduct a more precise analysis.

Second, our estimates in the cross-sectional design at the time of death revealed an association between the use of each LTC service for home-dwelling recipients prior to the recipients’ death and the place of death. Thus, their effect on home deaths cannot be concluded. Furthermore, although many covariates were adjusted in this study, referring to the previous studies, unobserved confounders might have remained. In particular, the preferences of recipients and their informal caregivers regarding the place of death might confound between exposures and outcomes. We assumed that the variables of other LTC services’ use would work as a proxy for their preferences for the place of death, and that excluding the residents in LTC facilities and qualified nursing homes under LTCI from the study participants would ease this limitation. Since accurately measuring their preferences has been difficult, more studies using quasi-experimental and interrupted time series designs would be needed to deal with these unobserved confounders [51].

Third, in the study, home deaths might have included some unintentional and unattended deaths because such situations were not apparent in death records. However, we assumed that most recipients and their informal caregivers in this study were receiving appropriate medical and LTC services for home-dwelling recipients at the end of life because they had previously applied for LTCI, were using LTC services for home-dwelling recipients to some degree, and passed away with the exception of external cause of death.