An American’s Experience with End-of-Life Care in Japan: Comparing Brain Death, Limiting and Withdrawing Life-Prolonging Interventions, and Healthcare Ethics Consultation Practices in Japan and the United States

Abstract

American and Japanese laws, customs, and practices in end-of-life decision-making differ significantly. We present a case with which one of the authors was involved to illustrate some of the key legal and cultural differences in the declaration of brain death, limiting and withdrawing life-prolonging interventions, and healthcare ethics consultation practices. The analysis presented facilitates understanding of similarities and differences between Japanese and American healthcare ethics specifically in regards to end-of-life care. Further, the analysis provides insights that can aid in developing policies and practices in regions where multiple cultures coexist.

Conflicts of Interest. The authors have no conflicts of interest to declare.

Introduction

Across the globe, diverse countries and cultures approach end-of-life decision-making differently, which may lead to conflict when healthcare professionals from one culture care for patients and families from another. In this paper, we present a case involving a mixed Japanese-American family residing in Japan to explore legal, cultural, and ethical considerations from Japanese and American perspectives (the case has been altered to protect anonymity). This case study is intended to inform readers of customs and practices in Japan, promote dialogue, and provide an opportunity to achieve mutual understanding. We believe that this case study and discussion will be enlightening for those in the United States and elsewhere, where cultural pluralism is commonplace and healthcare professionals encounter a range of values and beliefs. It may also be useful for healthcare policy development in regions where individuals of different cultures coexist.

An End-of-Life Case in Japan

Mrs. Smith, a Japanese woman in her 50s, has lived in Japan for her entire life. Her husband, Mr. Smith, is an American citizen (not of Japanese descent) who has lived in Japan for many years since marrying Mrs. Smith. In 2016, Mrs. Smith was at home when she collapsed and was rushed to a local hospital. She was placed on a ventilator in the intensive care unit, and a diagnostic workup revealed that she had suffered a massive stroke. Mrs. Smith was treated in the ICU for several weeks, but her condition did not improve. The attending physician told Mr. Smith that she had no discernible brain activity. When Mr. Smith asked if she was brain dead, the physician explained that Mrs. Smith appeared to be clinically brain dead. Mr. Smith requested that the physician turn off the ventilator; however, he was told that the ventilator would not be turned off in this situation in Japan.

Mr. Smith then asked an American physician-bioethicist who was practicing in the United States for a “second opinion.” The American physician-bioethicist replied that, based on the report from Mrs. Smith’s physician, Mrs. Smith was highly likely to meet American brain death criteria, and that were she at an American hospital the ventilator could be removed. Accordingly, Mr. Smith talked to the chief administrator of the hospital and asked for an ethics consultation to consider the ethical issues concerning Mrs. Smith’s treatment plan. Unfortunately, the hospital did not have a formal ethics consultation system, so the chief administrator called for a meeting with the hospital director, vice directors, chief nurse, and hospital attorney to discuss the treatment plan for Mrs. Smith. Their decision was to continue the ventilator and provide life-prolonging treatment to Mrs. Smith, according to brain death and end-of-life principles in Japan. Meanwhile, Mrs. Smith’s eldest brother, Mr. Tanaka, came to the hospital to inquire about Mrs. Smith’s condition. After hearing about all the actions Mr. Smith had taken, Mr. Tanaka became emotional and told him, “Do not make these decisions by yourself! Our relatives will get together and decide what to do with her.”

Ultimately, Mrs. Smith remained on the ventilator and received treatment at the same hospital until she died of other causes. This was very distressing to Mr. Smith, because Mrs. Smith had previously stated that she would not have wanted to be kept on a ventilator under such circumstances.

Brain Death and Organ Transplantation

This case illuminates three domains in which there are significant differences between American and Japanese laws, customs, and practices:1) brain death and organ transplantation; 2) limiting and withdrawing life-prolonging interventions; and 3) healthcare ethics consultation practices. It is worth noting that the terms “neurological determination of death” and “death determined by neurological criteria” have widely replaced the former term “brain death” as the preferred term for individuals who are declared dead based on the irreversible failure of the entire brain (Gries et al., 2013). We use the term “brain death” throughout as this is the term generally used in Japan. Below, we describe the laws, customs, and practices in Japan as they compare to those in the United States.

In Japan, the legal framework for declaring a patient brain dead is closely tied to organ donation. Indeed, in Japan, a patient cannot be declared brain dead unless she will be an organ donor. In contrast, people are routinely declared brain dead in the United States without consent for organ donation. Many have argued that the concept of brain death became widely accepted in the United States because there was a strong desire to obtain organs without violating the dead donor rule. Although this may have been the origin of the widespread acceptance of brain death in the United States, most American clinicians and ethicists make a strong point to separate organ donation and brain death. Indeed, in the United States many fear connecting brain death and organ donation because such a connection could lead the general public to believe that the concept of brain death is merely a ruse on the part of physicians to take organs from patients, leading to greater numbers of Americans refusing to allow their loved-ones to be declared brain dead. This is a significant difference between brain death standards in Japan and the United States.

Although brain death has been seriously discussed in Japan since the 1980s, it was not legally accepted until the 1997 enactment of the Organ Transplantation Law (Akabayashi, 1997a, 1997b). In order to become an organ donor, and therefore be eligible for brain death diagnosis, the 1997 law required both the patient’s written intention (i.e., donor card) and the consent of the family, and clinicians were required to follow a strict protocol for the declaration process. Under Japanese law, brain death must be determined independently by two physicians who are either specialists with sufficient experience in diagnosing brain death, or academic society-accredited physicians who are not involved in transplantation; and the two examinations must be separated by six hours (Igata, 2002). By comparison, in the United States criteria for the determination of brain death vary to some extent by state and by age, with no single process uniformly employed nationally despite well-accepted national guidelines (Greer et al., 2020; Nakagawa et al., 2011; Wijdicks et al., 2010). The first organ transplantation from a brain dead donor in Japan was performed in 1998 (Akabayashi, 1999). However, because the number of brain dead donors in the following years remained extremely low, the law was revised in 2010 to allow organ donation with family consent alone (i.e., without the patient’s written intent). The revised act also enabled transplantation from pediatric donors (Office for Organ Transplantation, 2011).

In practice, when a patient meets clinical criteria for brain death in Japan, the physician discusses the potential for organ donation with the family. Only if the family wishes to consider organ donation is the Japanese Organ Transplant Network (JOTN) contacted. A coordinator from the JOTN meets with the family to provide information about organ donation and assists the family in decision-making. If the family favors organ donation, the coordinator obtains the family’s consent. Only after the family consents to organ donation can brain death be declared.

Further, the Ministry of Health, Labour and Welfare has designated approximately 500 “procurement hospitals” throughout Japan (Japan Organ Transplant Network, 2019). Only these specific facilities are allowed to procure donor organs; therefore, patients can be declared brain dead only at those specific hospitals. Patients who meet clinical criteria for brain death at other hospitals cannot be declared brain dead unless they are transferred to a procurement hospital; however, according to the official Q&A section for the Organ Transplantation Law, transportation of patients solely for the purpose of organ donation is prohibited.

Organ donation from brain dead donors has been legal in Japan for over twenty years; however, the number of organ donors remains extremely low (International Registry in Organ Donation and Transplantation). One of the most important English-language books on the subject was written in 2001 by Margaret Lock, a cultural anthropologist who offered brilliant comparisons between North America and Japan. However, there have been significant shifts in Japan with regard to several factors discussed by Lock twenty years ago. Lock observed widespread distrust in medicine; there is now significantly more trust in doctors generally and in medicine as an institution in Japan. Similarly, Lock noted a lack of infrastructure; however, in the past two decades, healthcare infrastructure for organ donation has improved. Lock discussed opposition from traditional religions as a significant barrier to organ donation in Japan; such opposition is markedly less in current Japanese culture. In the late 1990s, excessive press coverage was a significant barrier to organ donation in Japan, and, as noted elsewhere in this paper, press coverage continues to cause some hesitation among healthcare providers and hospitals; however, this problem is greatly improved in 2021 compared to two decades ago. While Lock noted uncertainty in brain death criteria as a significant barrier to widespread acceptance of brain death in Japan, there is now significantly more uniformity due to international guidelines for the determination of brain death (Greer et al., 2020; Nakagawa et al., 2011; Wijdicks et al., 2010). However, in a recent paper authors argue that three areas discussed by Lock, “views on corpses,” “perspectives on family,” and “characteristics of altruism in the Japanese,” are cultural factors that are only slowly changing and are important in families’ decisions regarding organ donation (Akabayashi et al., 2018).

Views on corpses

According to Japanese folk beliefs, where Buddhism and myths are intricately linked, death is a journey to anoyo (the other world). Gotai manzoku (five-body satisfaction), defined as an intact body with no defective body parts, is required for the journey. Because many Japanese believe that removal of organs violates body integrity and therefore makes the journey to anoyo laborious, there is significant hesitancy among many to allow organ donation. Cultures that focus less on body integrity (e.g., Christianity, which focuses more on the person’s soul) are often more willing to donate organs.

Perspectives on family

Japanese have traditionally seen themselves as only one part of their larger family. Over the past decades, with the nuclearization of Japanese families, there has been some shift away from this orientation toward smaller family units; however, family remains extremely important in Japanese society. In healthcare, families continue to play an integral role in decision-making. Indeed, patients often defer even highly-important decisions to other family members. When someone defers decision-making to others, including family members or doctors, this is referred to as omakase. Further, many continue to view the individual’s body as not merely his own, but rather as one part of the larger whole that is the family (Akabayashi et al., 2018).

In the case presented, we see this difference in perspective manifest when Mrs. Smith’s brother, Mr. Tanaka, becomes angry with Mr. Smith for attempting to make such a significant decision without consulting his wife’s family. Mr. Tanaka believes that Mrs. Smith should leave such decisions to all family members [omakase], that her body is an integral part of his family, and what is done to it has repercussions for all family members. As such, in Japanese culture, any decisions regarding life-prolonging interventions must be made by the larger family, not merely by the patient’s spouse.

Characteristics of altruism in Japanese culture

Although Japan is often viewed as a communal society, individual interests are also highly valued. In Japan, the concept of “volunteerism” is focused not only on altruism, but also on self-interest. In Japanese culture, individuals who volunteer for something expect that they will benefit personally (Akabayashi et al., 2018). This is somewhat different than the American notion of volunteerism, which tends to focus on altruism without personal gain. Because the individual who donates his organs does not personally benefit from being a donor, many Japanese do not see value in being an organ donor.

There is evidence, however, that this hesitancy for being an organ donor is shifting in Japan. According to public opinion polls, there has been a slight increase over the past twenty years in the proportion of Japanese who express their intent to become organ donors (i.e., complete an organ donation card), as well as in the percentage of cases in which the patient’s intention to donate is respected. Moreover, with the government’s interventions into secondary education, a gradual rise in the number of brain dead donors is expected in the near future (Akabayashi et al., 2018; Japan Organ Transplant Network).

Limiting and Withdrawing Life-prolonging Interventions

In our case, because Mrs. Smith was not at a designated procurement hospital, even if her family had been willing to donate her organs, she could not have been an organ donor and therefore she could not have been declared brain dead. Given Mr. Smith’s understanding of his wife’s prior stated wishes, he asked to have her breathing tube removed to allow her to die (which would be considered standard practice in the United States); he was surprised when this option was not acceptable to her family or care team. In this section, we explain why withdrawing life-prolonging interventions is not accepted in Japanese culture and why the only reasonable option for Mrs. Smith was to continue life-prolonging interventions until she died due to other causes.

In Japan, attitudes regarding non-initiation of life-prolonging interventions continue to evolve. A survey conducted in 1997 indicated that “both physicians and family members tend to consider withholding or withdrawing life-sustaining treatment as abandonment or even killing” (Asai et al., 1997, p. 323). A more recent opinion poll conducted in 2014 by the Ministry of Health, Labour and Welfare asked respondents whether they would wish to be placed on a mechanical ventilator in a scenario where they had “no hope of recovery” and are headed to “gradual or sudden death.” Among lay-persons, 67% responded that they would not wish to be intubated, and only 11% responded that they would want to be intubated. Healthcare workers were even more likely to decline mechanical ventilation in this survey: 87% of physicians, 92% of nurses, and 84% of ancillary healthcare staff responded that they would not wish to be intubated under such circumstances (The Ministry of Health Labour and Welfare; the Study Group on the Awareness Survey on End-of-life Medical Treatment, 2014).

Although limiting life-prolonging interventions is accepted in Japan, few have completed a living will or an advance directive (AD). In Japan, the Death with Dignity movement intensified in the latter part of the twentieth century, leading to the introduction of living wills. The Japan Society for Dying with Dignity (JSDD) allows anyone over fifteen years of age to register with the society and complete a living will; however, only 0.1% of eligible Japanese (approximately 110,000 people) have elected to register and complete a living will (Japan Society for Dying with Dignity).

One barrier to advanced care planning in Japan is that ADs are not recognized as legally valid documents. Physicians are not required to follow a patient’s AD, and many are afraid of being sued for breach of their duty of care if they follow an AD and withhold life-prolonging treatment. In the United States, many states have adopted legally-valid resuscitation status orders (POLST, MOLST, etc.), and providers are required by law to follow such orders. Such a system does not exist in Japan.

Further, because most Japanese see themselves as one piece of a larger family unit, rather than as a wholly independent individual, most see an AD as merely a suggestion to their family members. In a 1998 survey assessing end-of-life attitudes among the general population, roughly 80% of respondents strongly or moderately agreed that it is better to have expressed one’s wishes regarding medical treatment in advance; however, only 8% had completed an AD (Akabayashi et al., 2003). The most popular reasons for wanting to express one’s wishes were: “I want to undergo the treatment of my choice,” “I hope to not burden my family with end-of-life decisions,” and “I want to decide for myself.” However, nearly 70% of respondents stated that their family and doctors do not need to strictly follow their AD and should be allowed to make decisions that are not consistent with the AD when reasonable (Akabayashi et al., 2003). A public opinion survey conducted in 2014 revealed that a high proportion of respondents (65% of laypersons, 63% of physicians, 60% of nurses, and 66% of ancillary healthcare staff) “desired to receive treatment that respects their written wishes, while taking into consideration judgments of family members as well as physicians and a medical/care team,” suggesting that omakase and family culture still mirror the underlying values of patients and healthcare professionals. (Ministry of Health, Labour and Welfare, 2014).

Further, most Japanese (both laypersons and healthcare professionals) are unfamiliar with advance care planning. In a 2017 public opinion survey, 95% of laypersons, 92% of ancillary healthcare staff, 79% of nurses, and 76% of physicians reported that they did not know what advance care planning was, or that they have heard of it but did not understand it well. As such, although ADs are available in Japan, their use is minimal (Ministry of Health, Labour and Welfare, 2018).

While withholding life-prolonging interventions is considered legal and ethically permissible in both the United States and Japan, withdrawing such interventions, while widely accepted in the United States, remains taboo in Japan. In Western culture, the equivalence thesis states that “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;” however, this concept is not well-accepted in Japan (Wilkinson & Savulescu, 2014, p. 128).

In North America, life-prolonging interventions are often withdrawn near the end of life. This is especially true when the patient will not survive or will survive with devastating neurological injury (Cook et al., 2003). The Society of Critical Care Medicine states that, in general, life-prolonging interventions (including mechanical ventilation) should be limited or withdrawn when there is no reasonable expectation that the patient will improve sufficiently to survive outside of the hospital with sufficient cognitive capacity to perceive the benefits of treatment (Kon et al., 2016). The five leading critical care organizations in the United States and Europe support limiting or removing life-prolonging interventions even over the objection of the family (Bosslet et al., 2015). As such, terminal extubation (i.e., removing the ventilator knowing that the patient will die shortly after extubation) is not uncommon in the United States.

In Japan, however, terminal extubation remains taboo. For example, between 2000 and 2005, two physicians at the Imizu Municipal Hospital removed ventilators from seven terminally ill patients whose families requested withdrawal of life-support. All seven patients died after withdrawal of mechanical ventilation. These cases made national headlines in 2006, and the hospital director apologized, stating that his staff had performed “ethically problematic” treatment withdrawal. Police referred the physicians to prosecutors in 2008; however ultimately the prosecutors determined that there was insufficient evidence for prosecution (Tanaka et al., 2020). Interpreting “mechanical ventilator removal” as an “act” that directly leads to patient death, some scholars argued that terminal extubation (what was once referred to as “passive euthanasia” in the United States) is equivalent to murder. Although the physicians were not ultimately prosecuted, the case was reported heavily in the media, which had negative repercussions for the hospital and hospital leadership. Doctors and hospitals continue to be wary based on such experiences.

Japanese academic societies and the Ministry of Health, Labour and Welfare have published guidelines for withdrawal of life-prolonging interventions; however, no physician in Japan has publicly disclosed performing terminal extubation. Further, Japanese courts have not ruled on any such cases. Based on cases such as the Imizu case above, most doctors and families fear police investigation and thus choose to continue life-prolonging treatment despite wanting to stop what they perceive as non-beneficial interventions.

There are other cultural reasons why withdrawing life-prolonging interventions is not well-accepted in Japan. Cultural concepts that cover individualism are “amae” and “village society”; these two concepts relate to the attitudes of Japanese towards withdrawal of life-prolonging interventions (Nakazawa et al., 2019). Amae is “the desire to depend on, affiliate, and be indulged” in human relationships (Johnson, 1993, p. 159). Village society is a form of community formation, in which the people tend to avoid “prominent acts” that disrupt the internal homogeneity. If an individual makes an assertion that is significantly different from the community’s mainstream view, his action may be perceived by the other community members as a betrayal of the group (Nakazawa et al., 2019).

In contrast to American-style individualism, Japanese-style amae psychology and village society form a collective or family-oriented code of conduct. Amae in the medical setting is reflected in patients’ attitudes of not wanting to make decisions about their own treatment, and deferring decision-making to others (Nakazawa et al., 2019). Withdrawing life-sustaining treatment is generally viewed by Japanese as very aggressive behavior, and therefore most Japanese are not comfortable making such a “radical” decision due to the effects not only on themselves but also on their entire family. Members of a village community cannot choose withdrawal of life-prolonging treatments without considering the beliefs, customs, and standards of their community.

As such, while it is legal and ethically permissible not to initiate life-prolonging interventions in both the United States and Japan, the two cultures differ significantly regarding withdrawal of a life-prolonging intervention that has already been initiated. American and Western healthcare professionals and bioethicists believe that withdrawing an intervention is ethically equivalent to not initiating that intervention, and statutes and case law support their practice. In contrast, while some Japanese healthcare professionals and bioethicists view withdrawal of life-prolonging interventions as ethically permissible, and such acts are not strictly illegal, terminal extubation is not practiced in Japan due to cultural mores, concern for litigation, and fear of potential criminal prosecution. Therefore, Mr. Smith’s request to withdraw his wife’s ventilator and allow her to die was incongruous with Japanese customs and practice.

Healthcare Ethics Consultation

Most Japanese hospitals lack formal ethics committees, and educated, trained healthcare ethics consultants are extremely rare. A survey performed in 1995 showed that 100% of Japanese university hospitals and 24% of general hospitals with >300 beds had an established ethics committee (Akabayashi et al., 2007); however, these committees were primarily focused on review and approval of research protocols rather than on clinical ethics. Only 18% of the university hospital committees and 32% of the general hospital committees provided clinical ethics consultation services (Akabayashi et al., 2007).

In 1997, the Japan Council for Quality Health Care (JCQHC) added clinical ethics-specific questions to their hospital self-assessment questionnaire. The JCQHC began asking hospitals to report whether “clinical ethics is considered at an organizational level” and whether “a place (e.g., committee) to systematically examine [clinical ethics] is established [at the hospital].” (Japan Council for Quality Health Care, 1997) These added questions led to change in hospital practices across Japan. Since the JCQHC began requesting data on clinical ethics, there has been a significant shift toward separation of the clinical ethics function and research ethics function of committees. Although formal research ethics committees remain ubiquitous at university hospitals and are more prevalent at general hospitals, far fewer hospitals have established formal clinical ethics consultation services. A 2005 survey of Japanese resident-teaching hospitals showed that while 90% of respondents stated that there is a need for clinical ethics consultation services, only 25% of resident-teaching hospitals have such a service. Among the respondents at the 75% of hospitals with no consultation services, 37% stated that they defer ethics-related questions to the hospital director’s judgment and 18% entrust decisions to attending physicians (Nagao et al., 2005).

In contrast, hospital ethics committees are common in the United States. A 2007 study found that 81% of general hospitals and 100% of hospitals with >400 beds had a clinical ethics consultation service; however, only 41% of those providing consultation services had supervised training in clinical ethics consultation (Fox et al., 2007). The American bioethics community has recognized the risks involved when unqualified individuals perform clinical ethics consultations, therefore the American Society for Bioethics and Humanities has developed national certification in healthcare ethics consultation (the HEC-C), and more than 500 American consultants are now certified.(American Society for Bioethics and Humanities, 2021).

Not only do the mechanisms of ethics consultation differ significantly between Japan and the United States, but data also suggests that for similar cases, Japanese and American ethics consultants focus on different aspects and demonstrate fundamental variances in case analysis. In one comparative study in which two American and two Japanese ethics consultants were presented with the same case, the American consultants tended to focus primarily on patient values and individualism, whereas the Japanese consultants tended to focus on the opinions of family members and the patient’s participation as a member of the larger family (Nagao et al., 2008).

To date, omakase medicine—i.e., patients deferring important decisions (including value-laden decisions) not only to family members but also to the physician—has been deeply rooted in Japanese culture (Akabayashi et al., 2018). Although in recent years there has been a substantial introduction of the concept of self-determination in Japanese culture, doctors continue to have significant decision-making authority. Accordingly, hospital leadership tends to focus on public perception and legal risk. As seen in our case, many Japanese hospitals rely on hospital leadership for ethical decision-making. These leaders generally have no specific education or training in healthcare ethics and are often driven by fear of publicity and/or legal entanglement. In the United States, such consultations are generally handled by hospital ethics committees or healthcare ethics consultants. Although American ethics consultants often lack education and training in the field, there is hope that certification will gradually improve the overall quality of ethics consultation.

Conclusion

Japanese healthcare ethics, in both educational institutions and sites of medical practice, has been heavily influenced by American healthcare ethics (Akabayashi, 2009). However, Japanese bioethics has evolved to preserve many of the traditional aspects of Japanese culture. Japanese bioethics is therefore viewed as incorporating both traditional Japanese as well as American values; however, there remain some key differences in customs and practice. For example, in Japan the OTL stipulates that it is permissible to remove organs from the body of person who has been declared brain dead; however, it does not state that brain death is human death. By recognizing two distinct types of death (cardiac death and, for the purposes of organ donation, brain death), Japan has found a solution to the problem of obtaining organs for transplantation while maintaining cultural paradigms.

The Japanese approach to end-of-life decision-making, as illustrated in the present case, can be viewed as Japan’s effort to preserve its heritage and traditions in the wave of modernization and internationalization. Although Japan may be seen as reclusive and hesitant to accept what is often viewed as “modern” culture, it strives to incorporate other cultures and ideas in a way that maintains social integrity and a shared heritage. We hope that this case analysis is helpful for ethicists in multi-ethnic countries and can assist ethicists in designing institutional policy. We believe this discussion is particularly beneficial for healthcare ethics case consultations involving families with Japanese family members, as we have endeavored to provide a better understanding of the Japanese cultural perspective on decision-making authority, individual and family values regarding end-of-life care, and the impact that the death of one individual may have on the family as a whole.

Discussion Questions

1. 1. What are the moral underpinnings equating loss of neurological function with biological death?

2. 2. Given that in Japan, brain death is clearly used as a means to obtain organs for donation, why is there such hesitancy in the US to link brain death with organ donation?

3. 3. Compare and contrast the American ideal of individuality with the Japanese ideal of omakase.