Japan has the highest proportion of elderly people in the world and according to a study where in community residing elders were asked to fill in questions about preferred timing and methods of receiving information on ACP, Japanese elders appear receptive to advance care planning (ACP). Yet its practice remains low and less than 30% of clinicians and nurses reported using ACP with their patients.

 Low uptake of ACP in Japan may partly relate to cultural values, beliefs, and expectations around end of life held by Japanese patients and their families. The Japanese guideline has been more recently updated, highlighting the importance of ACP and its documentation, as well as recognising community care workers as a part of the multidisciplinary health care team to support patients in the community. The lack of legislative framework and clarity in ACP execution process means that all the patients, the family and health care professionals struggle when considering the most suitable way to practice ACP.

For a large numbers of Japanese people, their home is a preferred place to receive end of life care. With ongoing ageing of its population and the government’s recent reform to reduce hospital beds, the number of patients dying either at home or residential facilities is increasing. Community nurses consequently play a significant role in the provision of end of life care for patients at these locations. Together with clinicians, community nurses are in the position to trigger discussion of ACP with patients and the family, and this was acknowledged in the recent national guideline in Japan.

However, Japanese families hold great power in decision making around ACP, and end of life care in general could be ascribable to cultural traditions and expectations. It was apparent from the results Japanese family dynamics is different from that in Western family and this difference has been acknowledged to complicate the implementation of ACP in Japan. 

Japan is often described as having a shame-based-culture where shame is used to achieve social control. It is also known for its unique cultural concept sekentei, which refers to people’s concerns about public perception of their behaviour and being socially acceptable. Withdrawal from active treatment, for example, is considered bad for sekentei and the family can be highly susceptible to the feeling of shame and guilt during ACP, especially if patients’ wishes in care contradict what the society considers appropriate.

Attainment of true informed consent from patients and the family in Japan is challenging when considering advanced care directive, a formalised advance care plan. ‘Informed consent’ in Japanese has slightly different meaning to that in English. ‘Setsumei to doi’, the translation of informed consent in Japanese, can be obtained without patients’ knowledge in their diagnoses as clinicians are not legally mandated to share this information with them. Practice of informed consent differs between Japan and western countries such as Australia and United States, where honest disclosure of diagnosis and prognosis is an important aspect of informed consent involved in ACP and it reflects their cultural differences. There is a focus on upholding the principle of patient autonomy during informed consent, while in Japan clinicians play paternalism and family authority takes precedence to an individual patient’s needs and wishes.

In Japan, there is a great reliance on others to assume the role for decision-making regarding lifestyle and health care. In this traditional practice called omakase, patients entrust their family and clinicians with health care decisions including those relevant to end of life care, assuming others would make the most appropriate and beneficial calls for them.

This custom unfortunately encourages delays in adequate consultation between patients, the family and healthcare professionals, thereby complicating decision making around end of life care. Additionally, this over-reliance on others for health care decisions may result in lower quality health care practices that do not align with patients’ wishes.

So, my research explores cultural inference on end of life decision making in Japan and how to implement individual decision making by the patient.
Y. Naito, Y. Tomita, . K. . Breaden, and Y. . Parry, “Community Nurses’ Perspective on Barriers to Effective Utilization of Advance Care Planning for Terminal Care of The Elderly in The Home Environment in Japan: A Systematic Review and Synthesis of Qualitative Studies”, International Journal of Advanced Health Science and Technology, vol. 2, no. 3, pp. 150–155, Jun. 2022. 
 

Author: Yumi Naito, Casual Academic at the College of Nursing and Health Sciences, Flinders University