Japanese Care Location and Medical Procedures for People with Dementia in the Last Month of Life

Abstract

Background:

Dementia-related societies worldwide have called for palliative end-of-life care for those suffering dementia; meanwhile, the Japanese dementia plan was revised on January 2015 to introduce into its objectives the support for end-of-life care via increased social and health care collaboration.

Objective:

The study focus was the use of medical procedures in the last month of life among dementia patients in different care locations in Japan.

Methods:

This study was conducted using a retrospective study design. Data from the Survey of Institutions and Establishments for Long-Term Care, which is a nationally representative cross-sectional survey of the public long-term care insurance services, were used. The 6,148 patients who received end-of-life care in their own home, nursing homes, or hospitals in September 2007, 2010, and 2013 were included for analysis. The primary disease of each patient was based on the ICD-10 code; a diagnosis of dementia included F00 (Alzheimer’s), F01 (vascular), F02 (other), and F03 (unspecified).

Results:

Of 6,148 patients, 886 (14.4%) had dementia as a primary disease; most received care in the last month of life in nursing homes (48.0%) or hospitals (44.8%) rather than in their own home (7.2%). Patients were less likely to undergo pain management when their primary disease was dementia (adjusted odds ratio, 0.44; 95% confidence interval, 0.21–0.91).

Conclusion:

Education and policy efforts are required to provide palliative end-of-life care to people with dementia at home. The national dementia plan should also explore possible approaches regarding pain management for dying people who have dementia.

Keywords

Dementia hospice care nursing homes pain management palliative care

INTRODUCTION

Alongside the aging of societies worldwide, dementia has become a global public health priority [1]. In view of the growing number of dying people who have dementia, dementia-related societies worldwide have called for palliative end-of-life care for people living with dementia [2]. Many people with dementia are cared for until their death in nursing homes [3, 4], and they may experience several distressing symptoms and burdensome interventions [3 , 6]. To improve the quality of end-of-life care for people with dementia, palliative care should be of clinical and researchpriority [7 –9]. Several countries have established national dementia plans to manage the significant and growing impact of dementia [10 –12]. However, national dementia plans do not necessarily address palliative care in dementia [13].

Japan also has faced a lack of end-of-life care for dementia along with its strikingly aging population. Mandatory public long-term care insurance (LTCI) was established in 2000 for elderly individuals. Care services under the LTCI program include home care and residential services for individuals aged 65 years older or those aged 40 to 64 years who have a specific disease. The LTCI program covers most persons with dementia [12], while death in hospitals is more frequent among decedents whose primary cause of death was dementia (rate of hospital death in 2013 = 48.5%) [14] compared to those in European countries[4, 15].

Japan has launched the “Five-year Plan for Promotion of Dementia Measures 2013–17” (Orange Plan) to help people with dementia and their families live in the community for as long as possible [12]. The Orange Plan was revised on January 2015 to add “collaboration between health and social care to support the end of life” to the former plan [16]. This addresses decision-making issues about life-prolonging treatment, and clarifies how multidisciplinary teams can support people with dementia in making decisions in advance. However, the New Orange Plan still lacks specific palliative care content that should be targeted to people with dementia. Palliative care policy in dementia should be further explored in light of the reality regarding end-of-life care among people with dementia. Most research on end-of-life care for people with dementia has been conducted in the United States [17]. Furthermore, it has been mainly discussed in nursing homes [3 , 18], and group homes in Japan [19 –21]. The New Orange Plan aims to help people with dementia live in their own home for as long as possible; little information is available regarding end-of-life care for people with dementia living in their own home. Therefore, relatively little is known about the use of medical procedures among people with dementia in different care locations in Japan.

The present study aim was to provide an overview of the use of medical procedures in the last month of life for people with dementia in different Japanese care locations. The association between the care locations and use of medical procedures was examined.

MATERIALS AND METHODS

Design and setting

We used data from the Survey of Institutions and Establishments for Long-Term Care (SIEL), which is a nationally representative cross-sectional survey of the public LTCI services. A detailed description of the SIEL has been reported elsewhere [22].

The SIEL is conducted by the Ministry of Health, Labor and Welfare and is comprised of a facility survey that is conducted annually in October and a patient survey that is conducted every three years in September to assess individuals who used home-based nursing care, individuals who were discharged from LTCI facilities, and residents of LTCI facilities. LTCI facilities consist of special nursing homes, geriatric intermediate care facilities, and medical long-term care sanatoriums. For the current study, we used information from the databases for 2007, 2010, and 2013, because information on medical treatment was not included in the patient surveys conducted in 2000 and 2003. Permission was obtained from the Ministry of Health, Labor and Welfare to access the SIEL data for 2007, 2010, and 2013.

The SIEL patient survey used a two-stage stratified random sampling procedure; first, institutions were selected; second, a sample of users, residents, and discharges was selected from the chosen institutions. The managing director of each institution was asked to rate current users, residents, and all patients who were discharged from the facility in September.

Participants

Our sample was compiled from the original database to extract patients who received end-of-life care in their own home by home-visit nursing providers, and decedents of special nursing homes (nursing homes) or medical long-term care sanatoriums (hospitals) (Fig. 1). We did not include decedents of geriatric intermediate care facilities because these facilities are aimed at rehabilitation.

A total of 6,473 patient-level questionnaires were collected from 3,014 institutions during the period. From the 6,473 responses, the following 325 patients were excluded: 23 patients who were 39 years or younger, 107 patients who resided in group homes or other housing with care, and 195 patients withincomplete information. The remaining 6,148 patients from 2,901 institutions (1,117 home-visit nursing providers, 948 nursing homes, and 836 hospitals) with complete information were included in the analysis.

The 6,148 responses analyzed were from individuals who were significantly older (t(263.21) = 4.93, p < 0.001) and with lower ADL (t(221.54) = 3.88, p < 0.001) compared to the 325 excluded patients. These patients also included significantly fewer patients who were at home (χ ²(2) = 101.11, p < 0.001), fewer patients in 2013 (χ ²(2) = 24.73, p < 0.001), and more patients whose primary disease was dementia (χ ²(1) = 10.48, p = 0.001) compared with the excluded individuals. The 1,117 home-visit nursing providers included had significantly more full-time equivalent nursing staff per user compared to the 63 excluded providers (t(64.40) = 2.32, p = 0.023). The 948 special nursing homes included did not show any significant differences from the 31 that were excluded. The 836 medical long-term care sanatoriums that were included had a significantly lower percentage of local governmental ownership compared to the 19 that were excluded (χ ²(3) = 7.95, p = 0.047).

Measurements

The SIEL patient survey includes questions about the primary disease, medical procedures in the last month of life, and characteristics of the discharged patients. Institutional characteristics were obtained from the SIEL institutional survey.

The primary disease was determined by the ICD-10 codes. Based on previous findings regarding care transitions in the elderly population [23, 24], primary disease was divided into the following seven categories: Dementia, cerebrovascular diseases, other diseases of the circulatory system, diseases of the nervous system, malignant neoplasms, musculoskeletal diseases, or any other diseases. Diagnosis of dementia included the codes F00 (Alzheimer’s), F01 (vascular), F02 (other), and F03 (unspecified).

Medical procedures within the last month of life were assessed for 11 types of treatments: Infusion, sputum suction, oxygen therapy, percutaneous endoscopic gastrostomy (PEG) tube feeding, other tube feeding, total parenteral nutrition, bladder catheter, stoma, respirator, tracheostomy tube, and pain management.

The following patient characteristics were collected: Age, gender, level of physical dependence, level of cognitive impairment, and medical procedures within the last month of the life. The managing director of the institution reported the use of medical procedures to the patient within the last month of life in the SIEL patient survey. The public LTCI program guidelines state that clients should undergo a regular certification of the level of physical dependence based on input from the primary attending physician regarding the level of disability and the primary disease. The level of physical dependence is as follows: 1 (independent), 2 (independent in daily life), 3 (home bound), 4 (bed bound), and 5 (completely bed bound). Higher levels correspond to a lower ADL and have a demonstrated significant association with poor quality of life among people with dementia in nursing homes [25]. The level of cognitive impairment is as follows: 1 (no symptoms of dementia), 2 (independence in daily life), 3 (independence with supervision), 4 (some problems in communication and requiring personal care), 5 (frequent problems in communication and usually requiring personal care), and 6 (always requiring medical care). This scale has demonstrated consistency with the scores on the Mini-Mental State Examination and Hasegawa Dementia Scale-Revised [26].

Ethical considerations

Return of the survey implied consent; therefore, those at the facilities were not required to sign consent forms. To preserve respondent anonymity, identification numbers were assigned to the facilities and patients. The study was approved by the Ethics Review Board of the Tokyo Metropolitan Institute of Medical Science (15–4).

Data analysis

A univariate analysis was conducted to compare medical procedures and patient characteristics between the presence of dementia as a primary disease in the last month of life using Pearson’s chi-square and Student’s t tests. The use of medical procedures with significant differences between the patient groups was also compared within care locations.

A multivariate binomial logistic regression analysis was conducted using the rate of medical procedure as a dependent variable, and the categories of primary disease and care location as independent variables. The independent variables also included patient characteristics (age, gender, level of physical dependence, and level of cognitive impairment), and year of assessment. The use of medical procedures with significant differences between dementia patients and any other patients were used as independent variables in each binomial logistic analysis. Because data were collected from patients nested in an institution, a multilevel model was employed to control for the similarity of patients in an institution. Two-level modeling was set to include Level 1 (patient) and Level 2 (institution) simultaneously. The model included institution as a random effect to account for correlations within an institution.

All statistical analyses were conducted using Stata SE for Windows, version 14.0 (StataCorp, College Station, Texas, USA). The two-tailed significance level was set at 0.05.

RESULTS

Of the 6,148 patients, 886 (14.4%) had dementia as the primary disease. Other diagnoses included malignant neoplasms (n = 1,778; 28.9%), cerebrovascular diseases (n = 1,367; 22.2%), circulatory system diseases (n = 553; 9.0%), musculoskeletal diseases (n = 200; 3.3%), nervous system diseases (n = 159; 2.6%), and other diseases (n = 1,205; 19.6%).

A significantly lower percentage of dementia as the primary disease was observed in patients at home compared to those in nursing homes and hospitals. The 886 dementia patients included more patients who received end-of-life care in a nursing home or hospital, and those who were deceased in 2013 compared to the other 5,262 patients. Dementia patients had a greater mean age; greater physical dependence; more severe cognitive impairment; and were less likely to be male compared to any other patients. Dementia patients also had a higher percentage of infusion (53.6% versus 47.5%) and sputum suction (42.7% versus 35.9%) in the last month of life; lower percentage of total parenteral nutrition (3.7% versus 7.5%), bladder catheter (16.1% versus 19.7%), stoma (0.2% versus 3.1%); and pain management (1.2% versus 15.7%) in the last month of life (Table 1). The percentage of medical procedures was significantly lower among patients at home compared to nursing homes or hospitals for infusion (32.4%, 41.3%, 68.0%, respectively; χ ²(2) = 613.78, p < 0.001) and sputum suction (13.4%, 29.8%, 63.5%; χ ²(2) = 1261.51, p < 0.001). The use of a bladder catheter was significantly higher among patients at home (15.7%) compared to nursing homes (9.6%) but not compared to hospitals (29.1%; χ ²(2) = 262.50, p < 0.001). The remaining three items were significantly higher at home: Total parenteral nutrition (9.6%, 3.3%, 7.0%; χ ²(2) = 56.36, p < 0.001), stoma (6.3%, 0.5%, 0.8%; χ ²(2) = 173.76, p < 0.001), and pain management (35.1%, 2.4%, 1.7%; χ ²(2) = 1298.70, p < 0.001).

In the following binomial logistic regression analysis for all patients, we treated the rate of infusion, sputum suction, total parenteral nutrition, bladder catheter, and pain management as the independent variable. The use of stoma was excluded from the multivariate models due to the small sample sizes for both patient groups.

The use of infusion was significantly associated with end-of-life care in a nursing home or hospital, being male, greater physical dependence, and more severe cognitive impairment. The rate of infusion was significantly lower among patients with diseases of the cerebrovascular or circulatory system as the primary disease. The implementation of sputum suction was significantly associated with end-of-life care in the nursing home or hospital, being male, greater physical dependence, and more severe cognitive impairment. The rate of sputum suction was significantly lower among patients in 2013 and those with malignant neoplasm as the primary disease. The use of a bladder catheter was significantly associated with end-of-life care in the nursing home, younger age, greater physical dependence, and less severe cognitive impairment. The rate of bladder catheter was significantly lower among patients in hospital and those with cerebrovascular disease as the primary disease. The implementation of total parenteral nutrition was significantly associated with younger age and greater physical dependence. The rate of total parenteral nutrition was significantly lower among patients in hospital and those with dementia, cerebrovascular disease, or musculoskeletal disease as the primary disease. The implementation of pain management was significantly associated with end-of-life care at home, younger age, and having malignant neoplasm as the primary disease. The rate of pain management was significantly lower among patients with dementia or cerebrovascular disease as the primary disease. The random effect of institution (Level 2) ranged from 1.60 to 2.21, indicating a similarity in the use of these medical procedures for patients at one institution (Table 2).

DISCUSSION

Patients whose primary disease was dementia were more likely to receive care in the last month of life in nursing homes or hospitals rather than through nursing in their own home. While home-visit nursing providers are expected to serve as hospice services and play an important role in end-of-life care at home [27], they provided end-of-life care mainly to cancer patients. One possible explanation is that people with dementia may move from home to hospitals or nursing homes before they approach death. People with dementia are at risk of care transitions, such as hospitalizations and subsequent institutionalizations[28, 29]. Another explanation is that health care professionals may not regard home-visit nursing as a possible care option for people with dementia. Home-visiting nurses have shown low levels of confidence in providing palliative care even to cancer patients [30], although little is known about their knowledge and skills regarding palliative care for dementia. Palliative care approaches should be available for people with dementia regardless of their care location [8]. In addition, as mentioned in the Introduction, the national dementia plan in Japan aims to help people with dementia live in their own home for as long as possible. Greater efforts should be made regarding improvements in home care for people with dementia. Therefore, education and policy efforts are required to provide palliative and end-of-life care to people with dementia at home. Future studies should examine perspectives on palliative and end-of-life care in dementia among home-visiting nurses.

People whose primary disease was dementia were less likely to undergo pain management in the last month of life. Despite pain being common and frequent in people with dementia, pain management is suboptimal for them [18, 31]. Notably, the rate of pain management was significantly lower among patients in nursing homes or hospitals compared to those in their own home. Although the SIEL patient survey did not include pain assessment for the patient, one study that used a pain assessment scale in Japan reported that half of nursing home residents with cognitive impairment had pain [32]. Professional caregivers in these facilities may have less understanding of pain presence in advanced dementia. One previous study in Japan showed that nursing home staff did not necessarily have knowledge about comfort care for dementia [33]. Therefore, educational interventions should be explored to improve pain assessment in nursing homes and hospitals. Additionally, available approaches for pain relief are limited in dementia compared to those available in cancer. The public health care insurance program in Japan allows the use of opioids only for cancer pain. Regarding residents in special nursing homes, home-visit nursing care is available only for patients with last-stage cancer. Wherever patients reside, patients with dementia should have access to palliative care with no more restrictions than other patients who are eligible to receive palliative care [8]. The New Orange Plan focuses on withdrawing or withholding life-prolonging treatment [16]; however, the national dementia plan should further explore possible approaches of pain management for people dying with dementia.

The rate of total parenteral nutrition was significantly lower among patients with dementia compared to any other patients. This is in accordance with findings overseas that showed that Alzheimer’s disease was related to the lower odds of an intensive procedure at end of life [34]. Use of artificial nutrition for people with advanced dementia is of questionable value [35]. Based on the clinical evidence, a national guideline on the decision-making process for end-of-life care was published by the Ministry of Health, Labor and Welfare in 2007 [36] and the Japan Geriatrics Society in 2012 [37]. Meanwhile, our sample showed a higher percentage of tube feeding use among patients with dementia compared to the findings in Western countries [6 , 39]. In addition, patients were more likely to undergo infusion or sputum suction when they stayed in nursing homes or hospitals in the last month of life. A previous study in Japan suggested that, even when the nursing home residents documented their end-of-life care preferences, their preferences regarding the environment for their death were not known [40]. Advanced decision making on end-of-life care should include a discussion on balance between these aggressive treatments and palliative care options.

Even accounting for these patient characteristics, the random effect of the institution indicated the similarity between patients at one institution. The use of medical procedures may have been dependent on the institution where the patient received end-of-life care as well as the types of care locations. Each institutional end-of-life care policy would have affected the implementation of medical procedures to the patient. The national dementia plan should disseminate a comprehensive policy on end-of-life care and palliative care for people with dementia to managers of health and long-term care providers, regardless of the category of the care locations.

LIMITATIONS

The present study has several limitations. Because SIEL was a cross-sectional observational study, it is not possible to make causal inferences regarding the observed association between care location and use of medical procedures. The SIEL did not assess whether each medical procedure was withdrawn from the patient within the last month of life. Moreover, the SIEL did not include information on timing and number of hospitalizations during the last month of life. Comparisons between patients in their own home and those in nursing homes or hospitals should be interpreted with caution because the sampling method for the original data differed between home-visit nursing providers and LTCI facilities. Primary diseases other than dementia do not necessarily mean the absence of dementia, although the final regression model showed no significant association between cognitive impairment and total parenteral nutrition or pain management.

CONCLUSIONS

The present study aimed to examine the association between care location and use of medical procedures in the last month of life for people with dementia in Japan. Patients whose primary disease was dementia were more likely to receive care in the last month of life in nursing homes or hospitals rather than through nursing in their own home. They were less likely to undergo pain management compared to any other patients. Educational and policy efforts are required to provide palliative end-of-life care to people with dementia. The national dementia plan should further explore possible approaches of pain management for dying people with dementia.

Footnotes

ACKNOWLEDGMENTS

The present study was funded by JSPS KAKENHI, the Grant-in-Aid for Young Scientists (B), Grant Number 15K20796. The sponsor provided funding to carry out the project as presented in the article but had no involvement in the study design, methods, participant recruitment, data collections, analysis, interpretation, or preparation of the manuscript.

Authors’ disclosures available online ().

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