Introduction
With the surge in a number of the aging population globally, the importance of prevention and appropriate management of chronic diseases is increasing. As a result, choices of treatments are becoming more complex and difficult for patients to understand. Moreover, supporting patients in making various decisions, including treatments choices, is challenging particularly, during their end-of-life decision as it involves various ethical issues.
In recent years, Advance Care Planning (ACP) has become a popular choice as it enables patients and their families to make a timely decision about future treatment options. In the 1960s, there was a wave of criticism of medical paternalism in the United States and movements to clarify living wills and to make Advance Directive (AD). Accordingly, in 1991, the Patient Self-Determination Act was enacted in the United States, requiring hospitals to provide information about AD and to inform patients that they had the right to receive or refuse treatment. Although AD was considered suitable for implementing patient intentions, change in the patient’s decision over time caused problems in executing such fluctuating and unclear AD records. Therefore, the ACP that emphasizes reaching conclusions rather than merely recording them, was advocated. Recent studies have shown that ACP improves the quality of end-of-life care and satisfaction of patients and families, reduces stress, anxiety, depression in bereaved families1, and decreases the frequency of hospitalizations2, highlighting its efficiency and effectiveness in supporting patients decision.
In Japan, studies on the decision-making process for medical treatment and care in the end-of-life had been conducted since 1987, and the incident of a ventilator removal for euthanasia in the Imizu municipal hospital in 2006 led to rapid progress on the decision-making for medical treatment and care in the end-of-life in recent years. “Guideline for the Decision-Making Process for Terminal Care” was formulated in 2007, and it was revised as “Guideline for the Decision-Making Process for Medical treatment in the end-of-life” in 2018. In this revision, the importance of ACP approach was further emphasized as “individual’s wishes can change in accordance with changes in physical and psychological conditions, policy of medical treatment and care, and his/her desire to live, etc., which need to be discussed on a daily basis.” 3 Furthermore, the Ministry of Health, Labor and Welfare (MHLW) commissioned the ”Project for Improving the Medical System in the End-of-life, and Education for Implementing End-of-Life Discussion” (E-FIELD), which is an educational project for medical professionals to promote ACP, has been conducted nationwide to further promote and implement ACP in the medical field3. However, ACP was originally developed in the United States and Europe with proper legal support. Implementing ACP in Japan without such legal backing can create multiple issues that need to be explored. We are presenting a case study that demonstrates that the lack of strict legal guidance can cause a problem for the medical team to follow the patient’s desire at the end-of-life care.