Legal policy challenges in withdrawal of dialysis treatment in Japan

Abstract

Abstract Issue/problem In 2017, Japanese dialysis patients and kidney transplant cases numbered roughly 330,000 and 1,700, respectively. In March 2019, a patient died after a physician terminated her kidney dialysis at a hospital in Tokyo. The Tokyo Metropolitan Government and the Japanese Society for Dialysis Therapy (JSDT) investigated the case, questioning the patient’s terminal status and desire to withdraw her request to terminate dialysis. Description of the problem No Japanese law addresses treatment withdrawal, but several court decisions and the Ministry of Health, Labor and Welfare’s process guidelines and JSDT guidelines address treatment withdrawal from terminal patients. We examined relevant court decisions and guidelines, identifying three legal policy issues that may impact legal policy discussions on treatment withdrawal in other countries, regardless of the enactment status of such laws. Results First, the patient was not “terminally ill” as defined by the court rulings and guidelines. Second, a clear decision based on appropriate informed consent from the patient seemed absent, violating the court rulings and guidelines. Third, the physician’s judgment of patient competency for decision-making may have been missing. Lessons We considered problems beyond the court rulings and guidelines by focusing on the patient’s right to self-determination and treatment refusal in other countries. The Patient Self-Determination Act and the Patient’s Bill of Rights (US) as well as court rulings and the NHS Charter (UK) guarantee such rights, and collectively enable competent patients in the US, UK, and elsewhere to refuse dialysis even if they are not terminal. Japanese legislation does not guarantee such patient rights or the explicit allowance/prohibition of treatment withdrawal, regardless of the patient’s terminal status; enactment of such laws should be considered. Key messages We identified legal ambiguity due to a lack of the patient’s right to both self-determination and treatment refusal. This could impact the international discussion on dialysis treatment withdrawal.