In Japan, assisted living services for people with mental disabilities (particularly patients with schizophrenia who can become highly agitated) are provided in alignment with various laws, including the Mental Health Welfare Law, the Law for Comprehensive Support for Persons with Disabilities, and the Long-Term Care Insurance Law for persons aged 65 and older. One measure used to provide assisted living services to people with mental disorders (i.e., schizophrenia and borderline personality disorder) is housing development. The development of communal living quarters, also known as group homes (GHs), for people with disabilities to live in the community was legislated in 1992 based on the government-subsidized community life assistance project for individuals with mental disabilities and revisions to the 1993 Mental Health Act.
In Yokohama City, Kanagawa Prefecture, Japan, small welfare homes were established in 1990 before the legislation was enacted. By 2017, the number of GHs for people with mental disorders in Yokohama City had increased to 129. However, the policy of shifting from inpatient care to community life-centered care has been promoted since 2000, and GHs have become recipients of socially hospitalized patients from psychiatric hospitals. These patients can remain in these GHs indefinitely. Such GHs are usually affiliated with hospitals. Thus, although patients have been discharged from the hospital, they have merely been moved to a facility without medical staff, from where they still need to attend daycare at hospitals. Minimal interaction occurs with the local community, and the perimeter of activities is limited to hospitals, GHs, and nearby shops. A consequence of the provision of such housing support is that people with mental disorders are aging without the ability to transition to single-person living, given the co-occurrence of physical illnesses over time and deteriorating physical functioning. This trend has evolved into a social problem as people with mental disorders who can lead independent lives age and require more intensive care, which places a continually increasing burden on the nursing staff.
In the second phase of its Plan for Persons with Disabilities, which began in 2009, Yokohama City established “responding to the aging and serious illness of persons with disabilities” as a priority measure [1] and reported several findings. In 2012, a GH for older adults with mental disorders was opened as a model project. This model project provides care and nursing services, including end-of-life (EOL) care, 24 hours a day and 365 days a year. A survey of GHs that collected data on residents’ information, such as age, gender, physical illnesses, length of stay, level of care required, contact with family, and use of nursing care, reported that as the population aged, decreased physical functioning and mental disorders, makes it difficult for residents to live alone in GHs.
Until now, GHs for people with mental disorders have accommodated those who have maintained their independence in performing activities for daily living (ADLs). However, as the residents age, the demand for support with daily living and personal care increases. Therefore, maintaining sufficient support for people with mental disorders is difficult under the current staffing standards of corporate-run GHs (Type B), a welfare service that supports communal living for those with mental disorders.
In the third phase of the Yokohama City Plan for Persons with Disabilities from 2015 to 2020, strengthening the overall support system for GHs was promoted to assist the older adult population in continuing to live in their familiar communities as they age and prepare for the increasing severity of their disabilities.
In the fourth phase, from 2021 to 2026, it is necessary to develop GHs that meet the needs of users and their families, and a financial subsidy has been granted to support the renovation of buildings to make them more accessible, thereby addressing residents’ declining physical functions. The expected standards for addressing further functional decline, providing EOL care, and establishing GHs that meet the needs of users and their families have not been defined. Corresponding support measures should be based on careful consideration of the needs of the mentally disabled and their caregivers about where they will spend their remaining time, their treatment plans, and how their wishes will be expressed, accepted, and fulfilled.
EOL support for people with mental disorders has made little progress in Japan. EOL care is practiced only marginally and informally out of the nursing staff’s goodwill, as hospitals can no longer retain a terminally ill patient for whom treatment is no longer effective. GHs can only accommodate mentally impaired people who can manage themselves independently. This study thus aimed to collect data that will support the formulation of policies that ensure terminally ill people are supported through EOL care.
According to international literature, a person should not die because of a lack of knowledge about their prognosis [2, 3]. High treatment costs cannot be avoided [4], and many older people tend to die in hospitals [5]. Deaths in hospitals are correlated with being 65 years and older, as well as poor social circumstances such as a lack of acceptance of having a mental disorder [6]. Nursing homes are the second most common place where older people die [7], and as they age, they die without adequate treatment [8].
The prevalence of diabetes and kidney damage among people with mental disorders is high, and palliative care is required for chronic renal failure [9], heart disease [10], and end-stage chronic obstructive pulmonary disease [11]. Home-based palliative care team interventions have proven effective in enabling older people with disabilities to die where they wish [12]. However, the frequency with which palliative care has been provided to terminally ill older people with chronic non-cancer diseases admitted to acute care hospitals varies [13], with the most aged receiving even less adequate care [14].
However, in a web survey of Americans' Assessment of Care Provided in the U.S. Healthcare System (National Institutes of Health, 2018), participating health and welfare facilities surveyed found that most respondents had a positive perception of hospital emergency rooms (47%), followed by pharmaceutical companies (33%) and health insurance companies (31%), with nursing homes lagging behind (25%).
In the United Kingdom, guidelines have been developed to address the lack of professional collaboration [15, 16]. In the United States, people with mental illnesses with low life expectancy have a lower rate of hospitalization and a higher rate of nursing home admissions than those without mental illnesses. Furthermore, several of the studies reviewed in this study note that when people with mental disorders enter hospice, they often receive comparatively poor care. In Japan, previous research has shown that the premature death of people with mental disorders in the complications ward of psychiatric hospitals is frequently caused by inadequate palliative care for cancer, often provided in an inadequate environment.