Terminal Care and Disconnection of Ventilators
Perhaps the title of this article startled you.
Many readers may be thinking that this article will be about the Dignified Death Bill, which disappeared after repeated debate in Japan’s national Diet, but is now rumoured to be making a return. However, I would like to make it clear from the outset that this article will not be arguing either in favour of or against the Dignified Death Bill. Instead, this article will discuss the practical problem of what legal issues arise when a hospital disconnects ventilator equipment from a terminally ill patient under the current law, since the Dignified Death Bill has not been enacted.
First, in any review of the leading court cases on the topic of “terminal care” (healthcare at the final stage of a person’s life) the cases that are generally mentioned include (1) the 1991 Tokai University Hospital case (a doctor found guilty of injecting a terminal cancer patient with potassium chloride), (2) the 1998 Kawasaki Kyodo Hospital case (a doctor found guilty of removing a patient’s endotracheal tube and giving the patient a muscle relaxant drug), (3) the 2004 Hokkaido “Hospital A” case (a murder allegation was submitted to prosecutors after a 90 year-old male patient’s ventilator was disconnected with the permission of his family, but prosecutors chose not to file an indictment), and (4) the 2000-2005 case from Toyama Prefecture’s “Hospital B”, which involved an allegation of murder due to ventilators being disconnected from seven patients with terminal cancer, but prosecutors did not file an indictment.
If we look further back in history, the first case regarding the “right to die” was the case of Karen Ann Quinlan approximately 40 years ago. However, in that case, Quinlan eventually survived in a persistent vegetative state for a further nine years, so it has been said that the case was not really one of a “dignified death”.
The Case of Karen Ann Quinlan
In 1975, 21-year-old Quinlan fell unconscious after consuming Valium and alcohol. She was connected to a ventilator but was in a persistent vegetative state half a year later, so her parents commenced legal proceedings after the hospital refused their request to disconnect the ventilator. In 1976, the New Jersey Supreme Court allowed for the ventilator to be disconnected, but Quinlan continued to live after it was disconnected until she died of pneumonia in 1985.
Generally, when a person’s life is extended by using a ventilator, the person’s appearance deteriorates to the extent that family members “can’t bear to look”, and the burden of medical expenses is also a factor that is sometimes mentioned. However, at most hospitals there is a concern about the police becoming involved, so examples of a ventilator being removed from patient who is in a brain dead (or similar) condition are generally limited to when cardiac death is declared, or when brain death is declared for the purpose of organ transplantation. Apart from that, it is assumed that most cases involve limiting treatment to passive measures and refraining from employing aggressive care to treat pneumonia or low blood pressure. Theoretically, if the court delivers a judgment or provisional decision ordering the disconnection of a ventilator like in the case of Karen Quinlan, obeying that order would formally resolve the issue, but we should not expect Japan’s courts to deliver such a drastic decision under the present law.
The Ministry of Health, Labour and Welfare’s “Guideline Regarding the Decision-Making Process for Treatment and Care at the Final Stage of Life” (March 2018 edition) defines that when a patient’s wishes cannot be confirmed due to unconsciousness, etc., then (1) if the patient’s family can presume the patient’s wishes, then those wishes will be respected and care shall be based on the best treatment plan for the patient; (2) if the patient’s family cannot presume the patient’s wishes, then there shall be sufficient consultation with the family in order to decide what is the best treatment plan for the patient; or (3) in circumstances where the family cannot reach agreement, or will not give their consent to adequate and appropriate treatment after discussion with the treating team, then it is necessary for a separate discussion involving several experts to be put in place to provide consideration and advice on the treatment plan in addition to the treating team. (Note that active treatment which is intended to shorten the life of the patient, in other words providing for a dignified death, is not within the scope of the guidelines.)
Regarding point (1), namely when “the patient’s wishes can be presumed”, the wishes will be respected if there is documentary evidence such as an organ donor card or a living will, but if the family merely explains that “the patient previously said that they don’t want their life to be extended unnecessarily”, the reality is that doctors cannot help but be cautious when taking the “irreversible” step of disconnecting a ventilator.
Regarding the “sufficient consultation” under point (2), because there is currently no concrete agreement upon the required conditions that allow for the disconnection of a patient that is connected to a ventilator, I think it is difficult to immediately satisfy the “sufficient consultation” requirement in most cases.
As a result, the hospital becomes caught in a dilemma between heeding the family’s wishes, obeying the Ministry guideline and the fear of police intervention, which leads to the question of whether such a difficult legal problem should be imposed upon medical doctors.
Yet, to put it bluntly, there is a difficult relationship in identifying at what point the family’s wish of “putting the patient at ease” correlates with the question of “what is the best treatment for the patient”.
Regarding the guideline’s “sufficient consultation with the family”, simply establishing a dispute resolution office within the hospital will only function to resolve disputes between the patient and the hospital, but there is still a significant doubt whether this will provide a suitable “resolution” to the final stage of the life of a patient who has lived a life of many decades. Of course, because the patient’s “presumed wish” itself is an imaginary product of layering fiction upon fiction, moving even a little closer towards a “best treatment for the patient” that satisfies everybody requires establishment of a system that sufficiently understands the unconscious patient’s outlook on life, religious sentiment and sense of values, as well as the position and feelings of the patient’s family, and is properly supported by a counselling function. Without this, it is impossible to escape the criticism that it is merely a system for the hospital to avoid liability. On this point, the guideline only mentions a “separate discussion involving several experts”, when a system design that goes as far as providing a detailed support system from the bureaucracy and an alternative dispute resolution mechanism for medical matters would be welcomed.
(Translated from the original Japanese)
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