Body Perception and Organ Donation: Bereaved Parents’ Perspectives

The Body as a Machine

This view was articulated by Rene Descartes in a theory referred to as Cartesian dualism (Descartes, 1984–1991): It refers to a dichotomy between the mind and body (Levin & Solomon, 1990; Synnott, 1992). Descartes asserted that although the Self resides within the body, it is an absolutely independent entity, he advocated the separation of the nontangible aspects of the Self from the body. The Cartesian subject is a thinking being which discards emotionalism in favor of instrumental rationalism, one which uses the material body as if it were a tool. The subject is granted the status of the Self, whereras the body is treated as a Self-less, subservient object (Młożniak & Schier, 2016).

The body as a machine metaphor is also commonly used in the biomedical sciences. For example, in Western medicine, the body-as-a-machine is a dominant metaphor (Levin & Solomon, 1990), it postulates that the human body is a mechanism of sorts (a machine), one which is the sum of its parts (Marcum, 2004). This model has a large influence on the way that both the patient and society interpret disease and treatment. From this perspective, diseases are seen as the dysfunction of particular systems or organs, which might be cured in the course of therapy or, if all else fails, replaced. The language of medicine insists that human body parts are material entities, devoid entirely of identity whether located in donors or in recipients (Lock, 2002). Within this biomechanical model, the embodiedness of the subject is detached from its social, cultural, and sexual context; it becomes fragmented and reduced to the mere aspect of meat and bones (Młożniak & Schier, 2016).

The Body as Self

The rejection of the body/mind dichotomy, which dominates the previous philosophical thought has been developed among French philosophers who argue that the body is a central ontological issue as it is an inseparable dimension of experiencing existence itself (Młożniak & Schier, 2016). The body is not an object or an instrument; rather, “I am my body,” which is my primordial sense of possession and control. The body is the only object in which one exercises immediate rulership (Turner, 1996).

Merleau-Ponty (2002a) assigns an even larger significance to the body, conceptualizing it as an inseparable part of the process of developing self-awareness. In his view, the body is the place in which meanings and senses arise, which in turn give rise to self-awareness and subjectivity. In this understanding, the “self” is not separate from the body because it stems from the body and perceives the world through the body. It is a corporeal, incarnate subjectivity (Turner, 1996). Of all the tangible manifestations of Self, body and body parts are consistently found to be the most central to identity (Belk, 1990).

The Body as Sacred Entity

An additional view of the body is, as a sacred vessel (Belk, 1990). From a religious perspective, if one believes that the body is a sacred temple of God, then mutilation of the body may be considered as a sacrilege. There is also a nonreligious sense in which the body may be seen as sacred. According to this worldlier view, the body is a supreme source of hedonistic pleasure dependent only on its attractiveness (e.g., Featherstone, 1982). Whether or not the perception of the body as a temple is founded in religion, adherents have in common a reluctance to mar this perfect vessel, even after death.

Each of these philosophical views has an impact on organ donation. Overall, one can speculate that the view of the body as a machine is likely to dominate donors’ perspective, as objectifying the body may assist in allowing organ retrieval to take place. Yet, perception of the body as Self can also promote donation; this perception can use donating organs as a means of memorializing the deceased’s spirit. Likewise, some Rabbis, relevant as the current study is performed largely in the context of Jewish law, as further explained below, make efforts to explain that Judaism’s view of the body as a sacred entity should not be equated with automatic rejection of organ retrieval. Rather, they emphasize that viewing the body as sacred also leads toward efforts to save life precisely through organ donation. These various assumptions were examined in the current research.

Sampling Technique and Informants

The maximum variation sampling was implemented in this study which requires researchers to look at the phenomenon under study from all available angles, thereby achieving a greater understanding. This sampling process also known as “Heterogeneous Sampling” involves selecting participants across a broad spectrum relating to the topic of study. The informants of this research varied in age, gender, years of education, the deceased’s age, as well as the time that had passed since the loss.

12 Jewish Israeli bereaved parents who agreed to donate organs following their child’s death participate in this research. Participants responded to requests for volunteers by the head of the National Transplant Center. (National Transplant Center is the only body in Israel where transplantation is recorded and through which organ transplantation is performed. In addition, prior to any transplant surgery in Israel, individual approval of the National Transplant Center—Ministry of Health is required, from a live donor or from a donor who died.) They ranged in age from 39 to 73 years, seven were mothers, and all but two were living with a partner. All participants had a high school diploma. Ten of them had continued their education, seven held bachelor’s degree, and three held a master’s degree. All informants had lost their child in a sudden traumatic event. The deceased’s ages ranged from 3 months to 29 years. Half of the deceased were single young adults with no children of their own. The others were young children. Of the 12, four deaths were the result of a brain aneurysm, three were the result of cardiac arrest, three were the result of a congenital anomaly, one occurred in a car accident, and one in drowning. Variation existed in the time passed since the child’s death (1-27 years); this varying period of grief further corresponds with the continuing bonds perspective that requires no restraints to be added concerning the time that had passed since the death as grief is no linear or sequential process (Klass, Silverman, & Nickman, 1996). This varying period of grief (1-27 years) allowed us to question changes and adaption in the bereaved parents’ body perception through the years.

Interviews

The interviews were conducted in Hebrew in the respondents’ homes and ranged from 2 to 4 hours. Interviews were audiotaped, and notes were completed immediately. An in-depth active interview approach was used that assumes “participants possess a stock of knowledge that is simultaneously substantive, reflexive, and emergent” (Holstein & Gubrium, 1995, p. 30). Active interviewing aims at “brings meaning and its construction to the foreground” (Holstein & Gubrium, 1995, p. 73). The goal in active interview is to create an interaction in which the participant’s interpretive capabilities can be activated (Holstein & Gubrium, 1995).

Michal Mahat-Shamir conducted all 12 interviews while always giving priority to the participants’ narratives over predetermined interview questions. The interview questions included the following: (a) general information concerning the bereaved parent, the deceased, and the manner in which death occurred (“Can you please tell me about ____ [the deceased]”); (b) the decision-making process which led to the donation (“Who made the decision to donate?” “How the decision was reached?” “Who participated in the decision process?” and “What were the different views in the decision process?”); (c) the participant’s body perception and the role of body perception in the donation process (“What is the meanings of the body?” “How you perceive the human body while being alive and after death?” “Did issues concerning the body (e.g., body integrity, sacredness of the body) relevant in your life?” and “Were they relevant in the decision to donate?”); and (d) body perception following the loss (“How do you think about ___ [the deceased’s] body these days?” and “Did the perception of his or her body changed throughout the years?”).

Method of Analysis

The method of analysis chosen for this study was a hybrid approach of qualitative methods of thematic analysis, incorporating both the data-driven inductive approach of Boyatzis (1998) and the deductive, a priori template-of-codes approach outlined by Crabtree and Miller (1999). These two forms of data analysis were perceived most relevant due to the juxtaposition of knowledge concerning body perceptions found in the literature and the dearth of scientific examination of this knowledge among donors.

Deductive thematic analysis began with explanatory assumptions and/or provisional definitions of something to be explained (Fereday & Muir-Cochrane, 2006). Per the protocol of such approach, the hypothesis or definition was then compared with the data and when they did not match, modifications were made. The inductive thematic analysis method was used in the modification process. Inductive thematic analysis refers to simultaneous comparing of all incidents observed for all participants and then arriving at a category label (Fereday & Muir-Cochrane, 2006).

The Analysis Process

The deductive thematic analysis method was first used where theoretical views of body perceptions were found in the data and the metaphorical labels that originate in the literature were checked to see whether they accurately matched the words of the informants. Second, the method was used in its inductive way: Each category of body perception was examined to research an in-depth understanding of the manner bereaved Israeli parents who agreed to organ donation use this body perception. Last, inductive thematic analysis was implemented to recognize ideas presented in the interviews that did not match the three recognized body perspectives (the body as a machine, the body as Self, and the body as sacred and sanctified entity). All three researchers independently identified the same overall ideas and then came to an agreement on the final identification, categorization, and later modification.

Ethical Considerations

Before beginning this research, we applied for and received approval from Ariel University Institutional Review Board (IRB). Ethical issues were addressed and discussed throughout the research process, starting from the research planning stage and continuing until publication. We provided detailed information to all participants concerning the research process, the interviews, and how the narratives were likely to be used. We provided this information both orally and in written form. Careful attention was given to issues of confidentiality as well as to protecting participants’ well-being. Participants were informed of psychological support that would be available to them should they feel emotional distress at any point during the research project; none of the participants, however, made use of this service.

Is It My Child or Just a Shell?

A holistic view of embodiment stresses the relationship between Self and body as closely linked; we are our bodies (Turner, 1996). This view was evident in the texts as bereaved parents described that when they were required to decide on the donation, it was difficult for them to separate the child’s Self from the child’s body:

At first, I said no. I didn’t want them to touch his body. He came into the hospital without a scratch and he is going to leave the hospital without a scratch.

Consistent with participant’s words, in previous studies, bodily integrity and fear of disfigurement have been found to be significant predictors in the decision not to donate (Morgan, Stephenson, Harrison, Afifi, & Long, 2008). As parents found it difficult to separate the child from the child’s body, they thought of organ retrieval as harming the child:

Initially I thought about it [organ retrieval] as disfigurement of the body, my sons’ body . . . my son. As if my son is going to get hurt. I felt the need to protect my son from that. The natural thing for me to say was “don’t touch him! Don’t touch him!” Only later, few hours later, I was able to think rationally . . .

Descartes’ methodological contemplation of whether he “was” or “had” a body eventually led to the Cartesianism that dominates Western medicine today and is a legacy that advocates the separation of the nontangible aspects of Self from the body (Haddow, 2005). Cartesian thinking is not only associated with the medical realm but is also the building block for most rational, Western models of thinking about embodiment (Haddow, 2005). Indeed, parents in the current research described how to give consent to organ retrieval, they needed to think “rationally,” to separate the child’s Self from the child’s body and to perceive the body as just a shell:

If one can’t separate the child from the body, one can’t give a consent for organ harvesting because one can’t consent harming his or her own child. So . . . so, I guess there is a need for a cognitive dissonance. So . . . when he died I didn’t feel like he was there, inside the body, I didn’t feel that harming the body meant harming him . . . the body was just a shell.

Upon separating the body from the child, the parents referred to the distinction they created between body and soul. This division is common in Western culture where the body is respected after death, but the body, without a soul, is no longer viewed as a person (Randhawa & Sharp, 2016):

I thought about the soul, my daughter’s soul. Once she died, her soul no longer resides in her body, the body is not her, it’s just a matter . . .

Although, at the time the decision was made, the parents separated the body from the child and saw the body only as matter, this distinction did not last long. In their dreams and thoughts, embodiment perception, that is, viewing of the body as Self, rose again; they reported being haunted by the disfigurement of the body:

I can’t think about how they [the doctors] dug her body . . . it’s too much for me to think about. I know it’s just her body and not her, but still . . . I have these dreams about her eyes, empty eyes because they took her cornea. I know it’s not shown, and I know it’s not really her anymore, but still I have these dreams sometimes . . .

Here again, the question arises of whether the child’s body is part of the Self or is it just a shell. Emotionally, the parents were haunted by the child’s appearance due to removal of the organ and perceived the child’s body as the child. Rationally thinking, they knew “it’s just her body and not her” and tried to separate the child’s body from the child and to relate to death as causing disembodiment (the Self as no longer embodied upon death).

As the question of the body as the child or as just a shell exists and continues to arise even years after death, parents made special efforts to maintain the perception of body as a machine alongside the embodiment view. To keep that perception of disembodiment, donating parents need to further alienate the body from the child. Participants used graphical and difficult images and metaphors concerning the body in an effort to distance it from their deceased loved child and themselves:

I knew they [the doctors] needed to take the organs out. It’s like when you open up a chicken or something, you have to bisect a dead animal in order to cook it don’t you? So, it’s the same thing, it’s just a body, a cadaver really, not even a body and certainly not my daughter. I perceive the body as an empty shell.

Bereaved parents struggled with whether the child’s body is the child or just a shell, yet, to agree to donate, informants described their efforts to alienate the body from the child and treat it as an empty shell. As a shell is typically composed of calcium carbonate, once the animal inside the shell is dead and the shell becomes empty, it may crumble but it may also be used in medicine (Oliveira et al., 2017). Likewise, when examining bereaved parents who agreed to body donation an additional, more vivid view of the body was evident, one that described the body as a “crumbling rotting” one. To this perception of the body, we now turn.

The Crumbling Rotting Body as a Product

Within the medical context, the body is reified through the clinical gaze (Foucault, 1973). Health care professionals are required to engage in what William Hunter (in Richardson, 1988) called “necessary inhumanity” or clinical detachment (Lock, 2002) to achieve “medical objectivity.” This clinical gaze transforms the organ donor into a “thing-in-itself”—an assemblage of body parts (Helman, 1988; Lynch, 1990). For the participants to agree on donation and to be in peace with the decision, parents further embraced the clinical gaze and perceived the body as a “thing”:

He was a very healthy young man, an athlete. Never smoked, exercised regularly, and slept well. So, I knew it [the body] was also in good shape, that this [the organs] was something others can use.

By alienating the body from the child’s Self, organ donation became conceivable for the parents as the body was stripped of its emotive and social value, that is, an object devoid of personhood:

After he [my son] died I held him in my arms and I could see . . . I could feel that it wasn’t him. It was just an empty body, just a thing . . . I then put him down because it wasn’t my son anymore, just . . . just a piece of meat . . .

It seems like some of the parents in the current research not only embraced the clinical gaze and perceived the body as a “thing” but also did so up to the point where, as Heidegger (1927/1962) feared, they reduced the body into an undignified object of biology—a corporeal thing. As such, the parents perceive the body as a crumbling rotting biological matter:

It [the body] actually rots; we know that for a fact, the buried body crumbles and rots . . . it becomes worm food, nothing more.

Some of the parents further reduced the body into an undignified object of biology as they referred to it as a disgusting matter:

When we die we crumble and rot, we become worm food. Nothing is left from us. So, if I would give you a bag of worm food, you look like a sane person, so I guess you would say “no thank you” or you would be polite, take it out of my hands and then you would throw it to the garbage. That is what we do when we bury someone; we throw the bag with the worm food to the garbage.

Empirical data show that although it is often assumed that the notion of the gift has a clear-cut meaning in medical ethics and on organ donation websites, participants thought about organ donation as a gift of life in multiple, complex, and sometimes contradictory ways (Shaw & Webb, 2015). Respectively, participants in the current study do not talk about a gift, but rather that if the body is just a biological disgusting, crumbling, rotting matter, it is best to give it, so that at least something good will come out of it:

Wouldn’t it be nicer for you to think about clean bones instead of about worms and rats eating the flesh? So, if it is possible to take that flesh, that piece of meat, and instead of letting it rot, use it for the best and help others, isn’t it better? Donating is not as disgusting as rotting in the ground and that way at least something good comes out . . .

The parents perceived the body as a natural organic object that may be rotting and crumbling in the ground or may be used as a product that may help others, a commodity:

It was not my child, it was a thing, a product . . ., and parts of it may be of use to somebody else . . .

Such objectification of the body violates the integrity of the embodied Self, “causing tension between the status of body parts as ‘self” (subject) or not self (object)” (Seale, Cavers, & Dixon-Woods, 2006, p. 26). Nevertheless, this tension was not resolved as the parents had not altogether accepted the Cartesian view of the body as a particular type of possession or thing:

If one does not donate the organs will just rot, so why not use that product? She has beautiful eyes someone can see with, and she has lungs someone can breathe with . . .

The parent in the above quotation referred to the body as a product, but when talking about the transplanted organs, he no longer talked about a “thing” or a “product,” he talked about his daughter and even used present tense saying she has beautiful eyes and lungs. This perception of the body organs, once transplanted, as being the child, again leads to the next theme: “body parts as parts of my child.”

Body Parts as Parts of My Child

The concept of commodification (Radin, 1987) entails that an entity is viewed and treated as a commodity, that is, an instrumental object without subjectivity and intrinsic value which can be replaced by similar objects or money: “Commodification is a social practice for treating things as commodities, ie as properties that can be bought, sold, or rented” (Resnik, 1998, p. 388). Although the parents did perceive the body as a commodity, they had not altogether accepted the Cartesian view of the body as a particular type of possession or a “rotting biological matter” when addressing the child’s organs after organ transplantation. After organ transplantation, there was a renewed embodiment between the child and the child’s organs:

It’s not her, she’s dead, but it’s something that was a part of her . . . so although she is dead, something is present . . . she is somehow present, she is not completely gone . . .

It is important to note that parents didn’t perceive the transplanted organs as the child or as the child’s “spirit” in another’s body, rather they perceived it as a part of the child that continued:

Sometimes you see it on television; parents put their ear on the organ recipient’s heart and say they feel their child. You will never hear me say things like that, I don’t feel like it’s my daughter, it’s not my daughter . . . a part of her lives in another body, but it’s not her, it’s just a part of her. I don’t even care who got her organs I just know a part of her is there, alive, and that makes me happy . . .

The participants didn’t perceive the organs as the child itself, but something from and of the child continued due to organ donation. One of the parents, for example, relates to his son’s role as continuing through organ donation:

I am merely blind. When my son was two years old I would sit him on my shoulders and ask him where are things or places I wanted. He could barely speak so he would just turn my head with his hands to the desired direction until I went closer and closer and could find the place/thing I wanted. He was my eyes . . . and . . . . I know someone who lives close to me, a man around my age got his corneas . . . So, in a way he is still someone’s eyes . . .

In the parents’ perception, body parts are also a part of the child as they served as a memorial for the child:

The man who received her heart comes to the cemetery every year. He remembers her since a part of her lives in his body. He remembers her, and his wife remembers, and his children . . . so in a way she lives on. Her organs allow her to live on in the body and in the mind of other people.

The parents’ perception of body parts as part of the child contradicted the idea of Cartesianism; in the former, the Self exists in the body parts and is not separated (Randhawa & Sharp, 2016). The loss of a child has long been recognized as a traumatic event (Buyukcan-Tetik, Finkenauer, Schut, Stroebe, & Stroebe, 2017) with severe affect on the psychological and physical well-being of bereaved parents (e.g., Stroebe, Schut, & Finkenauer, 2013; Vance, Boyle, Najman, & Thearle, 2002). Thus, it follows that participants in the current study seemingly needed the renewed embodiment to feel some sense of comfort or, in the view of Anja Jensen (2016), maintain some hope:

I don’t think of the organs as my daughter but . . . Maybe subconsciously, the fact that something from my daughter’s body will remain alive helps . . . maybe it helps dealing with the loss, maybe it comforts me in a way.

Ralph et al. (2014) in their systematic review highlighted that some participants felt a sense of comfort and relief as they believed donation perpetuated their relative’s “aliveness” and that their presence had not completely departed from them. In the current study, it seems that although parents did not perceive donation as keeping the child alive, they did find comfort in the perception that something remained alive, that something from the child may still prosper:

It was so dramatic and painful when he died, so painful! but organ donation is the opposite, it’s continuity . . . life continuity . . . it’s like a seed that rots, but here something sprouts . . . ___ [name of the dead son] is dead and I have to deal with that reality, but now there is also life, somehow, a part of him is still alive . . .

Summary

The results capture an ongoing perceptual change that bereaved donor parents experienced in their view of the child’s body. The change was characterized by both connecting and disengaging the child from his or her body. Thus, they perceived the child and the body at one point as one (an embodiment, the body as Self) and at another point as separate, and disconnected (a disembodiment, the body as a machine). Parents’ ability to move between these two positions allowed them to agree with and protect their decision to donate as well as to maintain an ongoing bond with their deceased child.

Limitations and Implications

This research was restricted to 12 self-selected respondents who are Jewish Israeli bereaved parents, who agreed to donate organs following their child’s death, and who volunteered for the study following a request sent to them by the head of the National Transplant Center. Furthermore, all participants had a high school diploma and most had continued their education and held bachelor’s or master’s degrees. This is a narrowly defined sample because it is possible that bereaved parents who are “privileged” due to their religious affiliation in the Israeli society and due to their education might demonstrate a unique, more complicated mechanism of body perception. Therefore, further research should reveal the perception of the body in the aftermath of a child’s organ donation among a larger, more heterogeneous sample.

Nevertheless, this study yields important applications for practice. Several possible implications might be derived from our results. First, on the macro level, health policy makers seeking organ donations are encouraged to relate to the body perception that accompanies this process as parents who donate their children’s organs seem to be engaged with. Moreover, it is recommended that health professionals who work with donors adopt a sensitive body-oriented approach which recognizes the changing perception of the body; from embodiment, toward disembodiment, and to a renewed embodiment. Reference to this process (i.e., giving and seeking information regarding body perception) when they apply to potential donors might support families granting consent their request. Second, on the micro level, the binary thinking of embodiment–disembodiment should be replaced by paradoxical/dialectical thinking, recognizing the caesura and the simultaneous grasp of both the biological and the social aspects of one’s life.