Factors promoting resident deaths at aged care facilities in Japan: a review

Inclusion and exclusion criteria

Studies were included if they identified facility-level factors that facilitated resident deaths in aged care facilities and identified individual-level factors associated with facility deaths. Additionally, studies were included if they identified external agency-level factors related to home deaths. This was essential because it is necessary for outsourcing facilities to co-ordinate with external agencies.

Exclusion criteria were studies that did not focus on related factors, exclusively assessed patients with specific diseases, or were reviews, commentaries, editorials and papers not written in English or Japanese.

Search methods

In January 2016, we searched four electronic databases: MEDLINE (1950–2016), CINAHL (1937–2016), Web of Science (1900–2016) and Ichushi (1984–2016). Ichushi contains bibliographic citations and abstracts from biomedical journals and other serial publications published in Japan.

Studies identifying related factors were searched using the following keywords: (‘residential facilities’ OR ‘supporting housing’ OR ‘assisted living facility’ OR ‘group home’ OR ‘halfway house’ OR ‘home for the aged’ OR ‘nursing home’ OR ‘group living’ OR ‘service house’), (death OR dying OR die OR ‘end of life’ OR palliative OR terminal*), and (place OR site OR location). Studies of external agencies were searched using the following keywords: (‘community health services’ OR ‘home care agencies’ OR ‘home care services’ OR ‘home nursing’ OR ‘visiting nursing agency’ OR ‘home care supporting clinics’), and the death and place keywords. Comparable search terms were used for Japanese language studies. We also included forward and backward citation searches of shortlisted studies.

Quality assessment

Study quality was appraised using a scale adapted from the Newcastle–Ottawa Scale (NOS) for quality assessment (Wells et al. 2006). This instrument assesses the quality of non-randomised studies in three broad categories (patient selection [four criteria], comparability [two criteria] and assessment of outcome [three criteria]). In cross-sectional studies, only six of nine criteria could be utilised (3, 2, and 1 respectively). When a study conformed to an NOS criterion, one point was added.

All studies meeting inclusion criteria were assessed. Because this review's objective was to explore related factors, studies with lower points were included. Despite searching for original articles, a number of magazine reports were identified, especially when using the Ichushi database (Japan Medical Abstracts Society 2008). In such cases, quality was assessed using the NOS scale.

Data extraction

In studies of facility/agency-level factors, the following data were extracted and entered into tables: author(s), publication year, participants, NOS score and related factors. In individual-level studies, factors were extracted. Consistent with a previous model, studies identifying factors were classified into three groups: environmental, individual and illness-related factors (Gomes & Higginson 2006).

Quality assessment and data extraction were completed by the first author and checked by a co-author (YO and MK) independently. Differences in assessment or extraction were managed by discussion until consensus was reached.

Eligible study characteristics

A total of 2324 articles were obtained from electronic searches and 42 papers were included in the final analysis (Figure 1). Fourteen studies identified death-related factors at the facility/agency level and 28 identified individual-level death-related factors.

The 14 studies that identified facility/agency level-related factors had the following characteristics. All studies focused on Japan's aged care facilities or external agencies. Additionally, the number of studies increased over time. Thirteen studies used a cross-sectional design and one was longitudinal.

Five studies focused on insourcing facilities, two on outsourcing facilities and seven on external agencies. All insourcing facility studies conducted univariate analysis. Four of five studies calculated death rate as the outcome measure; one study identified whether the facility obtained the EOL care bonus. In outsourcing facility studies, only one study performed univariate analysis and the other utilised description and simple graphs. One used facility death rate as the outcome measure and the others identified EOL care provision until facility death. Of studies about external agencies, three performed multivariate analysis, four utilised univariate analysis and one described results using simple graphs. Six used housing death rate as the outcome measure and the others identified the number of deaths.

Overall, the quality of outsourcing facility studies was lower than insourcing facilities and external agencies, especially for ‘patient selection’ and ‘comparability’ criteria. Lower patient selection points were due to participant representativeness and lower comparability points were due to fewer appropriate independent variables and lack of multivariate analysis.

The 28 studies focused on individual-level, death-related factors were conducted in Japan, the US, Canada, Belgium, the UK, Europe, Germany, Australia and Sweden. Of these studies, multivariate analysis was most common; the most frequently dichotomised place of death was facility versus hospital or home.

Insourcing facility-level factors related to in-facility resident deaths (Table 2)

Outsourcing facility-level factors related to in-facility resident deaths (Table 2)

External agency-level factors related to in-home resident deaths (Table 3)

Individual-level factors related to in-facility deaths (Tables 4-6)

Individual-level studies had the following characteristics. Countries included the US, Belgium, the UK, Germany, Canada, Japan, Europe and Sweden. The facility reference points included care homes, nursing homes, residential homes, LTC facilities, extended care facilities and community living centres. They also compared place of death (hospital; home: with or without homecare; and non-facility), and used different study samples (general population, facility residents) and analysis methods (multivariate, univariate).

Insourcing facilities

Initially, it is critical that healthcare service provision adequately copes with various residents' conditions at EOL. Specifically, high-quality studies reported that it was especially important that medical staff provide care at night/on holidays. In Japan, insourcing facilities are required to employ physicians and/or nursing staff. However, intensive care homes for elderly people often only employ these staff part-time. For example, the proportion of all facilities that employ a full-time physician, night shift nurse and had an existing system for physician visits at night/during holidays are only 5.0%, 5.2% and 50% respectively (Institute for Health Economics and Policy 2003). Many facilities cannot ensure that physicians and/or nursing staff provide EOL care or death certification. This situation increases unnecessary hospitalisations immediately preceding residents' deaths. To increase in-facility deaths, promoting employment of medical staff at night/on holidays or developing co-ordination systems between part-time medical staff and other staff are necessary.

Next, confirmation of resident/family EOL preference is associated with in-facility resident deaths. Specifically, high-quality studies identified that explanations about a facility's basic EOL care policy and confirmation of residents' advanced directives or family/resident EOL care facilitated insourcing facility resident deaths. Explanations about the facility's basic EOL care policy may contribute to admission of individuals who prefer to remain in the facility until death. Previous studies from the US and Australia reported confirmation of resident/family EOL preference significantly reduced resident hospitalisation (Caplan et al. 2006, Arendts & Howard 2010). Confirmation of advanced care directives can prevent hospital transfer of residents who do not prefer hospital deaths and may increase residents' deaths in aged care facilities.

Finally, strong evidence indicated that shared staff understanding about EOL care and staff EOL education were necessary for residents to remain in the facility until death. Insourcing facilities employ professionals from various occupations (e.g. physicians, nurses, care workers). Lack of medical staff and care worker co-ordination was an inhibiting factor for in-facility resident deaths (Hashimoto & Ono 2014). Development of a shared understanding or staff education about EOL will contribute to resident EOL care provision by promoting co-ordination between occupations. Additionally, a previous study from the UK reported education programmes designed to improve EOL cares increased care home staff discussion of advanced care planning and improved collaboration with general practitioners (GPs) (Badger et al. 2012). Other studies also reported that staff education significantly raised in-facility death rates of elderly people with dementia (Livingston et al. 2013). Staff education may increase in-facility death through promoting co-ordination of medical staff and confirming resident/family EOL preference.

With the rapid ageing, Japanese government already produced a bonus that is paid if an insourcing facility provides EOL care co-ordinating with physicians or nurses, educating staff, and confirming resident/family EOL preferences. However, this review suggests the government also should consider promoting employment of medical staff at night/on holidays.

The present findings also indicate some issues in other developed countries will soon be facing similar situations on ageing. For examples, in the UK and US, Care Quality Commission (CQC) or Centres for Medicare & Medicaid Services (CMS) assess and regulate care quality of insourcing facilities. However, staff education and confirmation of resident/family preference for EOL are not included in the assessment frameworks, although their necessity has been mentioned (Caplan et al. 2006, Livingston et al. 2013). In addition, although medical staffing is assessed by the assessment frameworks, issues remain. Nursing care homes in the UK in particular are required to employ nursing staff, but the standards of nurse staffing for EOL care are not present. Furthermore, 20% of nursing care homes did not have sufficient staff on the duty (CQC 2014). The facilities are not required to employ physicians. Instead, co-ordination between the facility and GPs is promoted by The Gold Standards Framework or the Liverpool Care Pathway for the Dying; these are developed in the UK to improve EOL care in care homes (Ellershaw & Wilkinson 2003, Thomas & Sawkins 2008). However, nearly half of the care homes may not have completed implementation of The Gold Standards Framework because of difficulty for co-ordination with GPs (Badger et al. 2009, Hall et al. 2011). Additionally, the number of nursing care homes registered to Liverpool Care Pathway did not reach 600 (The Royal Liverpool University Hospital St Marie Curie Cancer Care 2009). To promote in-facility death, other countries also need to solve these issues.

Outsourcing facilities

Studies of outsourcing facilities found co-ordination with outsourced healthcare (regular physician visits, available hospital beds) necessary to facilitate in-facility deaths. While healthcare insourcing facilities are obligated to employ physicians and nursing staff, outsourcing facilities are not. Such differences in healthcare provision engender the necessity of co-ordination with outsourced healthcare. Outsourcing facilities receive healthcare aid from external agencies. Thus, this review also found the factors required by external agencies so that they can effectively contribute to aged care facilities accommodating residents' deaths.

Two factors were important for external agency care provision until residents' deaths. First are healthcare provision-related factors. Around-the-clock visits and receiving HCSC orders for nursing visits were especially associated with in-home deaths. Conversely, lack of hospital attachment and difficulty accessing hospitals beds during an emergency were associated with visiting nurse agency housing deaths. Kashiwagi et al. (2015) stated that ‘service users of hospital-attached visiting nurse agency might be more likely to be admitted to the attached hospital immediately in case of an emergency, and then to die in the hospital’ (p. 940). Thus, outsourcing facilities should value agency capability for nursing visits and must directly discuss how to transfer users to hospitals.

Another external agency-related factor is confirmation of resident/family advanced directives. The reason for this might be similar. The following factors promoted housing deaths: visiting nursing agencies receive many visiting orders from medical institutions or the agency is a medical corporation. These situations may make it easier to confirm advanced directives and provide users with EOL care.

In Japan, a bonus is paid if external agencies provide around-the-clock visits or confirm the patient's preference for EOL. However, there is no incentive for co-ordination between outsourcing facilities and external agencies. The Japanese government should consider promoting outsourcing facilities to co-ordinate with external agencies that employ numerous medical staff with positive attitudes towards EOL care, co-ordinate with medical institutions (especially HCSCs), conduct visits outside the typical workday and confirm users' advanced directives.

In the UK, the CQC assesses the quality of GP's EOL care provided for outsourcing facility residents (e.g. residential care homes). However, a previous study reported that the numbers of visits by GPs to the facilities' residents fell (Evans 2011). The government needs to examine the co-ordination between outsourcing facilities and GPs. The US government requires hospice agencies to provide medical, nursing, social work, chaplaincy, and bereavement support in around-the-clock for facility residents under Medicare (Morrison 2013). Additionally, the CMS assesses the quality of care (CMS 2016). In fact, hospice use in outsourcing facilities (assisted living) significantly reduces discharges to hospital or nursing home (Dobbs et al. 2012). However, hospice agencies' staffs reported difficulty in co-ordinating with outsourcing facilities' staff because the facility staff do not understand disease process and symptom management (Dixon et al. 2002). Nevertheless, nearly half of states do not require the outsourcing facility to employ medication assistance staff or to train unlicensed staff (U.S. Department of Health and Human Services 2015). To promote in-facility death, these states may need to improve comprehension of outsourcing facility's staff.

Second, studies observed individual-level factors associated with in-facility deaths. Specifically, older age, female sex, single/widowed/divorced marital status, severely dependent ADL, severely impaired cognitive function and low educational level were associated with in-facility deaths in studies from various countries. Regardless of differences between countries or their policies, these characteristics may make it difficult to continue to live at home or receive healthcare at hospitals.

Considering worldwide ageing, elderly people with these characteristics will increase globally; this situation will require evaluating facilities' death-related capabilities. Nevertheless, the present review found all studies of aged care facilities used univariate analysis. This suggests previous studies failed to identify the capabilities. Ageing countries should use multivariate analysis to adjust for these factors.

Finally, it is necessary to address this review's implications. Only two studies identified factors about outsourcing facilities' capability for resident deaths (Institute for Health Economics and Policy 2005, Konagaya 2010). These studies had lower NOS scores due to a lower number of appropriate independent variables and lack of multivariate analysis. It may not have been possible to identify the key factors. Most of the outsourcing facilities claim lower benefits from social security programmes than insourcing facilities. Thus, the Japanese government promote to expand outsourcing facilities with producing the new tax incentives and subsidies (MHLW 2013b). The ageing countries' governments are also implementing policies that reduce insourcing facilities and provide outsourcing facilities to satisfy the sustainability of social security system. Therefore, there may be an increase in elderly deaths in healthcare outsourcing facilities globally. Identification of factors related to the capability of these facilities for residents' deaths is required.

Furthermore, the reviewed studies investigating external agencies did not focus on visits to outsourcing facilities. Thus, factors pertaining to external agencies' capability to facilitate deaths in outsourcing facilities were unidentified.

Review limitations

The present review had some limitations. First, it only evaluated studies identifying factors associated with Japan's aged care facility capability at the facility level. Not all of the findings can be applied to other ageing countries' facilities. Many individual-level studies from other countries identified factors pertaining to home death, but facility death-related factors were only used to compare home or hospital death-related factors. Thus, in these countries, it may be most important to promote home death.

Second, this review evaluated facility-related factors associated with facilitating resident deaths. Consequently, most reviewed studies utilised death rate as the outcome measure. However, a facility's capability for EOL care cannot only be evaluated by measuring death quantity. Therefore, other reviews are necessary to provide knowledge about high-quality EOL care in aged care facilities.

Finally, the present review findings should be interpreted with care from following points: the low methodological quality of studies, potential publication bias and limited search to English and Japanese databases.

Despite these limitations, this is the first review exploring factors that enable in-facility resident deaths. Information about determining the number of possible deaths at aged care facilities will be pertinent to ageing countries other than Japan. Therefore, the present findings serve as a useful reference for policy discussions about the necessary aged care facility capabilities in terms of factors related to resident in-facility deaths in Japan and other countries.