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Narrative Responsibility and Moral Dilemma
: A Case Study of a Family’s Decision About a Brain-dead Daughter

Takanobu Kinjo and Masahiro Morioka

-- Theoretical Medicine and Bioethics, Vol.32, No.2 (April 2011):91-99.

Abstract: A brain death case is presented and reinterpreted using the narrative approach. In the case, two Japanese parents face a dilemma about whether to respect their daughter's desire to donate organs even though, for them, it would mean literally killing their daughter. We argue that the ethical dilemma occurred because the parents were confronted with two conflicting narratives to which they felt a “narrative responsibility,” namely, the responsibility that drives us to tell, retell, and coauthor the (often unfinished) narratives of loved ones. We suggest that moral dilemmas arise not only from conflicts between moral justifications but also from conflicts between narratives and human relationships.

*Page numbers in the original are marked by [(preceding page) / (following page)].

Introduction

The narrative approach is helpful for analyzing and interpreting bioethical cases. The premise of this analysis is that narratives are important to each of us for all of us tell and listen to stories [1, p. 38]. Alasdair MacIntyre states that the human is “essentially a story-telling animal” [2, p. 201], implying that we organize and construct our experiences by telling our own stories and understand the experiences of others by listening to their stories. The narrative approach can also lead to deep [91/92] insight into a bioethical case because narrative is naturally sensitive to the intimate and unique human situations that arise from any moral experience.

In this article, we will introduce the concept of “narrative responsibility” and reinterpret a moral dilemma from a narrative perspective. Narrative responsibility can be defined as our responsibility to tell, re-tell, and conclude the last chapter of the life narrative of a loved one. From the viewpoint of narrative responsibility, we will “think with,” walk with, and listen to the stories of two Japanese parents who lost their daughter to brain death. We will focus on their personal narrative responsibility toward their daughter’s two unfinished but competing narratives.

After the tragic death of their daughter in an accident, the parents insisted on telling her narrative not only to make sense of what they were going through (achieving narrative understanding) but also to bring an appropriate end to the last chapter of their daughter’s life narrative (fulfilling narrative responsibility). The problem for them was that there were two competing narratives of their daughter, each with a different ending. The first narrative was that of the brain-dead body. As the parents engaged in nonverbal dialogue with their daughter’s brain-dead body, they began sharing the undeniable reality that the daughter was still alive. They thus wished to fulfill their narrative responsibility by rejecting organ donation and closing the last chapter of the daughter’s life narrative as peacefully as possible.

The second narrative was the daughter’s narrative of coming back. This was a narrative that started when the daughter told her mother that she would come back via a recipient’s body after organ donation. Taking over from their daughter’s narrative of coming back, the parents wished to fulfill their narrative responsibility by agreeing to organ donation and closing their daughter’s life narrative. Doing so was necessary to ensure that the daughter would come back to them. The problem was that these two competing narratives placed the　parents into a “narrative dilemma.” The parents suffered from a sense of moral failure because it was impossible for them to fulfill their responsibility to both narratives.

Many health care professionals tend to underestimate (or fail to perceive) how serious family members are about fulfilling their narrative responsibility to complete a loved one’s unreasonably terminated life narrative. We are thus eager to explore how, as a result, health care professionals can perceive and interpret a moral dilemma in a way that patients and their families do not. We hope that with a more appropriate understanding of “narrative dilemma,” health care workers can better support patients and family members who must make difficult and painful moral decisions.

The case

A 17-year-old female was transported to a hospital following a traffic accident. She was diagnosed as clinically brain-dead. In Japan at the time, both a donor card and family consent were necessary for organ transplantation following a legal diagnosis of brain-death. However, the girl had forged her mother’s signature on the donor [92/93] card. A year before the accident, she had said to her mother, “I have a donor card. If I become brain-dead and my organs are transplanted successfully, I will transform myself into the organs and I will come to meet you. I am not sure how the recipient will come to meet you. That person may ask you for directions or beg you for some money at a convenience store. In that case, please be kind because that person is me.” Even after the doctor explained brain death to the parents, they continued to believe that their daughter was still alive because her body was warm and her heart was beating. The mother wanted to respect her daughter’s decision to donate her organs. However, the mother believed that in order to do this, she would have to kill her daughter. The mother was unable to make a decision; she thought that this was a hell on earth. The father too experienced great hardship and was vomiting at home. In such cases, how can physicians and nurses support the family’s decision making and provide them with psychological care?

The narrative of the brain-dead body

Some of the patient’s family members in Japan see their loved one’s brain-dead body as “the communicative body,” the body that is open to family members via non-verbal communication, such as touch, facial expression and breathing [3, pp. 48-52]. Kunio Yanagida’s striking phrase, “the brain-dead body that directly talks back,” is probably the best example of such non-verbal communication. In Gisei (Sacrifice), Yanagida writes that he actually perceived his son’s brain-dead body talking to him:

When Kenichiro [the oldest son] and I [the author] talked to Yojiro, though he was brain-dead, his body talked back to us. This was truly a mysterious experience. This was probably a sense that can be understood only by members of a family who have shared happiness and sorrows with each other. Despite the scientific explanation that a brain-dead person is literally a dead person who has no consciousness or senses, I became quite sure that a beloved one’s brain-dead body means a lot to the family members who have shared a spiritual life with each other. [4, p. 129; authors’ translation]

A brain-dead person talking to his family may seem scientifically impossible. However, it appears to have happened to some bereaved families in Japan. For them, the brain-dead body continues the relationship between the dead and the living; the unconscious body still has a social role. Arthur Frank emphasizes that we communicate through our bodies because “the body itself is the message; humans commune through their bodies” [3, p. 50]. He suggests that for the family of a brain-dead person, his or her body transmits messages and provokes memories, emotions, and a sense of relationship. In responding to the messages sent by the brain-dead [93/94] body, the family takes on the role of retelling that person’s narrative: the “narrative of the brain-dead body.”

In reviewing the argument for a communicative brain-dead body, we shall revisit the case of the girl described above. According to the case description, the parents believed that their daughter was still alive because her body was warm and her heart was beating. After the daughter was diagnosed as clinically brain-dead, the parents visited her in the ICU. The mother described that experience:

As we were informed that her brain waves were gone and she became [clinically] brain-dead, we visited the ICU to see her right away. “You have tried hard enough, Mari. Rest in peace. I will carry you on my back so let’s go home,” said the father as he put his hand on Mari’s heart. I pushed my cheek against her cheek and kissed and embraced her as usual. But Mari was too warm to be a dead person! Her skin was still red. I could see her blood circulating as I rubbed her hands. “Is this death? If it is, I can bring her back into life!” I truly thought I could do that. [5; authors’ translation]

The daughter’s body was not silent. Via its warmth, its color, and the rhythm of its heart, the daughter told her parents that she was still alive. The body in this case is indeed communicative and open to the parents. It evoked the parents’ memories and emotions. The parents became the spokespersons for their daughter’s body. They heard her voice, and in response, the mother told the “narrative of the brain-dead body.”

However, this narrative appears to work against the parents giving consent to organ donation because harvesting her organs would have required them to end her life. This was unthinkable as long as their daughter’s heart was still beating. Eventually, however, the parents did in fact agree to her organ donation. Their decision was based on another counteracting narrative: the daughter’s narrative of coming back.

The daughter’s narrative of coming back

This case began with the description of a young woman who was clinically diagnosed as brain-dead after a traffic accident. We changed the tone of the case by including the distinctive narrative turn marked by the girl’s statement, “I have a donor card.” From this point on, the case ceased to be a typical bioethical case and became the mother’s “narrative of recollection.” The daughter is the original narrator, and the mother recollects and retells that story for her. About a year before her automobile accident, the daughter, Mari, learned that her mother’s cancer had returned. Mari then began to tell her mother the “narrative of coming back.”

At times, Mari looked down holding back her tears and then looked at me. She said, “please use my organs if people with serious diseases will be saved. After these people regain health following a successful transplant, I will enter into the heart, the liver, and the kidney, and I will come to see you. For the [94/95] sake of society and other people [I will donate my organs]; then I can come to see you. It is a solution that kills two birds with one stone, isn’t it? Mother, I want you to live longer. Please don’t feel sad because of my organ donation. I promise I will come back to see you.” [6; author’s translation]

Upon agreeing to donate her daughter’s organs, the mother requested that the doctors not remove the corneas. “I begged them not to take the corneas, her eyes, because Mari cannot find and enter into the recipients [without her eyes]. That was something we could not compromise on” [5; author’s translation]. Because the daughter’s coming back was a reality for both parents, they finally agreed to donate the other organs.

. . . (omission) . . .

In summary, what makes the case presented here unique is that the parents were compelled to tell the two different narratives of their daughter simply because they had to employ two competing means of telling those narratives. Since the daughter was no longer able to communicate, her parents had to (1) recall a “once-told” narrative of the daughter, and (2) listen to their daughter’s communicative body. The issue is not that there are two narratives for which the parents must be responsible but that the two narratives are in apparent conflict, giving rise to a painful narrative dilemma.

Why is a narrative dilemma difficult to resolve?

. . . (omission) . . .

An epilogue: Retelling narratives

. . . (omission) . . .

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