< Series: What is “normal” in Japan, what is “normal” in other countries #1> Where do people want to spend their final days? Where do they actually spend their final days?

 From 2010 to 2011, the International Longevity Center Japan carried out an international comparative research project on end-of-life care. As part of this project, we conducted the International Comparative Study on Ideal Terminal Care and Death. In this study, we asked medical doctors, nurses, direct care workers, and social workers about what they thought was ideal terminal care and what would actually happen.

 

The International Comparative Study on Ideal Terminal Care and Death: English summary.

https://www.ilcjapan.org/studyE/doc/End-of-life_Care.pdf

List of research activities since 2010 (in English)

https://www.ilcjapan.org/studyE/index.html

 

In this study, we presented these professionals in different countries with hypothetical cases, including Mrs. A with terminal cancer as shown below. We asked them where they thought would be the best place for Mrs. A to spend her final days. Additionally, we asked them where they thought she would actually spend her final days based on their previous experiences.

 

 

The results are shown in the graphs above. In all countries, while many respondents think the ideal place is the person’s home, in reality, they think people tend to spend their final days somewhere else. In particular, Japan has the largest gap between the ideal and the actual situations.

 

Also, in the National Survey on How to Spend the Last Moments of Life, conducted by the Nippon Foundation in 2021, a question was asked to older people about a preferred place to spend their final days when they found out death was approaching. The results (all older respondents) are as follows.

              Home: 58.8%

              Medical facility: 33.9%

              Care facility: 4.1%

              Child’s home: 0.1%

              Others: 3.1%

 

Moreover, the Survey on Healthcare and Care at the Last Stage of Life in fiscal 2023 asked where respondents would like to spend their final days and found the following results (responses by the general public):

              Home: 43.8%

              Medical facility: 41.6%

              Care facility: 10.0%

              No answer: 4.6%

             

The National Survey on How to Spend the Last Moments of Life

https://www.nippon-foundation.or.jp/who/news/pr/2021/20210329-55543.html (in Japanese)

 

As described above, both older people themselves and care professionals see the person’s home as the ideal place to spend their final days. But where do people actually die?

 

 

Sources:
Sweden	Palliative Care & Social Practice 2024, Vol.18: 1-13 "Trends in the place of death in Sweden from 2013 to 2019-disclosing prerequisites for palliative care"
Netherlands	Centraal Bureau voor de Statistiek, Sterfte Plaats Ovl 2019, table 1 Plaats van overlijden en rovincie van inschrijving voor totaal sterfte, 2019
France	Insee,  statistiques de l'état civil, DONNÉES DU GRAPHIQUE 26 - RÉPARTITION DES DÉCÈS SELON LE LIEU DU DÉCÈS
Japan	Ministry of Health, Labour and Welfare: Statistical abstracts on health and welfare in Japan 2024, Part 1 Chapter 2 Table 1-25
UK	Office for Health Improvement and Disparities, Palliative and end of life care: Patterns of care, England 2023
	https://fingertips.phe.org.uk/profile/end-of-life/supporting-information/factsheets#2

 

Unfortunately, data in the graph are not consistent as some countries do not regularly provide data on places of death. It is also unclear how each country categorizes such cases as deaths in residential facilities and deaths shortly after hospitalization. Nonetheless, the graph clearly shows some general trends in different countries.

 

In the graph, Japan has the lowest proportion of deaths at home, although it slightly increased from 13.9% to 15.7% between 2000 and 2020. A small increase in deaths at home is seen in almost all countries except in France.

The proportion of deaths at nursing homes and care homes has been growing in all countries; in Japan, it sharply increased from 2.4% to 12.5% between 2000 and 2020.

 

Deaths at home accounted only for 12.5% of the total cases in Japan. This result is remarkably different from the ideal or preferred situation: Home was selected by 79.2% in the International Comparative Study on Ideal Terminal Care and Death, 58.8% in the National Survey on How to Spend the Last Moments of Life, and 43.8% in the Survey on Healthcare and Care at the Last Stage of Life.

Where does this gap come from?

 

In the International Comparative Study on Ideal Terminal Care and Death and the National Survey on How to Spend the Last Moments of Life, older people and their families report different preferences: While many older respondents want to spend their final days at home, their families tend to seek as much medical effort as possible. These data suggest that families’ wishes are prioritized in reality.

Another key factor can be the availability of a user-friendly guardianship system in each country. Broadly promoting this system can help people clearly indicate their wishes and also help their loved ones understand these wishes.

 

In Japan, living arrangements among older people have been drastically changing. According to the Comprehensive Survey of Living Conditions in fiscal 2024, for the first time in history, “one-person household” became the most common living arrangement of households with older person(s) (32.7%), followed by “household of a couple only” (31.8%) and “three-generation household” (6.3%). In 1989, one-person households accounted only for 14.8%, while households with a couple represented 20.9% and three-generation households constituted 40.7% of the total.

In other words, from the viewpoint of older people themselves, they are less and less likely to be in the environment where people around them would help them out at the end of their lives. They should therefore let others know on a regular basis how they like to spend their final days. It should be one of the roles older people have in a super-aged society.

 ＜Written by Shinichi Ogami＞

Ministry of Health, Labour and Welfare: Comprehensive Survey of Living Conditions.

https://www.mhlw.go.jp/toukei/list/20-21.html (in Japanese)