Why Can’t Japanese People Decide?—Withdrawal of Ventilatory Support in End-of-Life Scenarios and Their Indecisiveness

Update

According to a recently updated survey on end-of-life care conducted by the Ministry of Health, Labour and Welfare (Japan) in 2017, the collective intention regarding end-of-life care has not yet reached a consensus. Within the general public, 66.0% (n = 973) approved of the idea of preparing written advance directives that describe the type of medical care or treatment they wish to receive (or not) if they were to become unable to make a decision. However, 91.3% (n = 642) of these had not actually written out any advance directives (MHLW 2018). In other words, while many Japanese think that it would be good to express their intentions about the end of their lives, most have not actually put this into action. Even when the sample population was limited to elderly over 60 years of age, 85.0% did not have anything in writing, despite agreeing that this would be a good idea (MHLW 2018). These results are fairly consistent with those from a survey conducted in 2013 (MHLW 2014).

These findings from the MHLW surveys demonstrate that Japanese people are not making practical decisions about end-of-life. This is not because the Japanese are too optimistic or lazy. But this must rather be because the socio-cultural factors of dependency (amae) and the village society have contributed to this hesitation toward practical decision-making in Japanese clinical settings. This is what we would like to point out.

In this report, we will (1) focus on issues related to medical care at the end of life, especially withdrawal of life-sustaining treatment; (2) explain the concepts of dependency (amae) and of village society; and (3) critically argue that the Japanese are hesitant to make decisions on this matter. Although our hope is that more Japanese will be able to make end-of-life decisions more effectively, we acknowledge that socio-cultural factors such as dependency (amae) and the village society are significant barriers that prevent such attempts. In addition to these factors, we also suspect that the Japanese culture places some value on the practice of not making decisions.

Institutional Aspect

As a representative case, in 2006, the Toyama Prefectural Police sent a primary report to the Toyama District Prosecutor’s Office against the physicians of Imizu City Hospital, who had removed the ventilator from an end-of-life patient, on suspicion of murder. Although the case was eventually dismissed, some scholars argued that this was, in fact, equivalent to murder, as “mechanical ventilator removal” could be interpreted as an “act that directly leads to patient death.” While academic societies and the Ministry of Health, Labour and Welfare (MHLW) have issued guidelines on the discontinuation of treatment, this remains an uncertain area of law, due to the lack of a precedential Supreme Court decision. As of March 2019, few physicians have publicly disclosed the discontinuation of ventilation support in an end-of-life patient who is unlikely to recover. Most medical practitioners and patient families fear police investigations and thus choose the option of continuing life-prolonging treatment, even if they believe it to be meaningless and want to terminate it.

As Japan is not a litigious country, the status quo is maintained for institutional reasons. Even if the prosecutor’s office does not press charges, papers sent to it by the police would be reported by the media as though a great crime has been committed. Such press reports can lead to social punishment and thus mental anguish to all parties involved (physicians, hospital staff, and family members). If even one case went to the Supreme Court and a precedent was established, this issue could be resolved. At present, however, the Japanese have withheld any clear declarations regarding the withdrawal of life-prolonging treatment and death with dignity. Indeed, some in the Japanese parliament are attempting to move toward legislation by submitting a bill to the Diet (The Mainichi Newspapers 2018). However, others are concerned that legislation about death with dignity would not respect the rights of severely disabled people, specifically with regard to their right to receive life-supporting treatment. It is fairly clear that the national debate is far from deepening. However, as long as no ruling is made on the legal front, the current situation is unlikely to change.

For a majority of the citizens, the idea of connecting a ventilator to a patient with no hope of a cure invokes little opposition. The survey in 2017 by the MHLW asked respondents whether or not they would wish to be put on a mechanical ventilator in a scenario where they had terminal cancer, had “no hope of recovery” and are headed to “gradual or sudden death.” Only 8.1% of lay people answered “yes,” whereas 65.2% answered “no.” As for healthcare workers, 88.1% of physicians, 88.1% of nurses, and 89.6% of facility care staff answered “no.” With respect to mechanical ventilation that has already been connected to a patient, however, no recent survey has specifically asked the question regarding its discontinuation (MHLW 2018, 59).

According to a survey conducted in 1997, “both physicians and family members tend to consider withholding or withdrawing life-sustaining treatment as abandonment or even killing” (Asai et al. 1997). Thus, in Japan, patients are kept on mechanical ventilation until cardiac arrest occurs, as physicians would not extubate clinically brain-dead patients unless they are organ donors, even if family members request treatment discontinuation.

It is important to make a clear distinction that, in Japan, active euthanasia (even with the patient’s wish) by means of, e.g., a muscle relaxant, is illegal. The famous judicial precedent is the Tokai University Hospital Case in 1991, in which a physician administered potassium chloride to a patient according to the demands of the patient’s family, resulting in the patient’s death (Akabayashi 2002). On the other hand, it would not be considered illegal to withhold mechanical ventilation if the patient expressed this intention in advance (if not possible, then via a family proxy). Thus, withholding mechanical ventilation based on the preliminary consent of the patient or proxy is legal, whereas active euthanasia is not. It is the withdrawal of mechanical ventilation from a patient who is already on ventilation support that has yet to achieve a social consensus in Japan.

Cultural/Ethical Aspects

With respect to the moral difference between withholding and withdrawing life-sustaining treatment, some Anglo-American ethicists have focused on the equivalence thesis: “Other things being equal, it is permissible to withdraw a medical treatment that a patient is receiving if it would have been permissible to withhold the same treatment (not already provided), and vice versa” (Wilkinson and Savulescu 2014). From the consequentialist standpoint, one might naturally support the equivalence thesis given that the same outcome is expected whether the treatment is withheld or withdrawn. In fact, while some medical professionals still disapprove of the equivalence thesis, many medical ethicists accept it (Sulmasy and Sugarman 1994).

In the USA especially, patient self-determination is highly respected. It is generally assumed that all human beings have the right to make important life choices free from the direction of others. In the USA, this idea is thoroughly enforced and individualism is firmly embedded in American culture.

Meanwhile, in Japan, individualism is less emphasized in the shadow of traditional culture. Let us focus on two cultural concepts, amae and “village society.” Amae is “the desire to depend on, affiliate, and be indulged” in human relationships (Johnson 1993, 159). This amae psychology has been suggested to underlie the typical behavioral patterns of Japanese people (Doi 1971, 15; 28). Amae in medical practice is manifested in the attitude of patients who wish to make no decisions regarding the course of their treatment, but instead have someone else decide what is best for them. By doing so, patients can simultaneously abdicate the responsibility of a decision-maker. The amae culture is also a culture in which nobody wants to take responsibility or make a decision. Withholding treatment does not involve decision-making for an “active” action; therefore, it does not contradict the amae concept. On the other hand, withdrawing treatment is an action that is actively decided upon and, hence, a departure from dependence (amae). Thus, the equivalence thesis is not easily tolerated in Japanese clinical practice, in which amae culture remains ingrained.

The second cultural concept, “village society,” refers to a closed and exclusive society. Behavioral patterns typical of Japanese people are compatible with this concept. Within the village society, people monitor each other’s behavior and consequently become homogeneous. Inside this society, there exists a comfortable space dominated by the amae structure, and this living space is by no means inconvenient. In the village society, “prominent acts” that disrupt internal homogeneity are avoided more than anything (Nakane 1970). For instance, if an individual expresses a view that differs from that of the rest of the community, this could be considered a kind of betrayal (cf. Lock 2001, 371). Thus, one cannot ignore the intent of the entire community and take the lead in, for example, advocating treatment withdrawal. Spontaneous decision-making is withheld until some authority intervenes and makes the decision.

Conclusion

In this paper, we pointed out the fact that Japanese are hesitant about making decisions concerning end-of-life care in an effective manner, based on an updated survey conducted by the Ministry of Health, Labour and Welfare (MHLW 2018). Furthermore, we presented the hypothesis that social and cultural factors such as dependency (amae) and village society are two causes contributing to this trend. In our critical discussion of these cultural factors, we describe dependence (amae) and village society as cultural features that are found throughout society in general, but that are socio-cultural characteristics particularly prominent in medical settings. In sum, these cultural factors characterize the “indecisiveness of Japanese people.” This may reflect the fact that the Anglo-American concept of decision-making about oneself was imported into Japanese medical settings too rapidly, with insufficient consideration of the Japanese cultural context. Paradoxically, it seems that the Japanese are rather affirming the current situation of having intention but ending up not making decisions. A global bioethical reconsideration of both the concept of decision-making and the concept of autonomy is needed, with a specific consideration of the cultural background. We hope for an ethical solution that would serve as guidance for both patients and healthcare professionals.

Funding Information

This study was supported by Pfizer Health Research Foundation.

Compliance with Ethical Standards

Conflict of Interest

Although AA is President of the Japan Association for Bioethics (JAB), this paper reflects the authors’ personal academic analyses and opinions. It does not represent JAB’s official position on this issue. The other authors have no conflict of interests to declare.