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research-article2014
QHRXXX10.1177/1049732314554101Qualitative Health Researchvan Manen
Article
The Ethics of an Ordinary Medical Technology
Qualitative Health Research 2015, Vol. 25(7) 996–1004 © The Author(s) 2014 Reprints and permissions: sagepub.com/journalsPermissions.nav DOI: 10.1177/1049732314554101 qhr.sagepub.com
Michael A. van Manen1
Abstract Some routinely applied hospital technologies may have unintended consequences for patients and their families. The neonatal cardiorespiratory monitor, a computer-like display used to show an infant’s vital functions, is one such technology that may become part of a parent’s day-to-day being with his or her hospitalized child. In this phenomenological study, I explored how the monitor may mediate parental sensibilities, reshaping the contact of parent and child. This exploration speaks to understanding the relational ethics of even the seemingly most ordinary of medical technologies in clinical contexts. Keywords ethics / moral perspectives; infants; lived experience; phenomenology; qualitative; van Manen For health care professionals, the use of certain medical technologies may be considered noninvasive. These technologies may be used so routinely and indiscriminately that they come to be a taken-for-granted part of the medical lifeworld. An example is the neonatal cardiorespiratory monitor, a display used to show a hospitalized infant’s vital functions (Murković, Steinberg, & Murković, 2003). The screen is designed for monitoring the child, and to alert the medical staff at times of need: Monitoring devices should have both visual and auditory alarms. The usual audible alarms fill a room with nondirectional sound, making it difficult to identify the source. To combat this problem, red lights can be installed in the ceiling above each infant. They flash when tripped by the monitor and identification of the affected infant is instantaneous. (Korones, 1985, p. 16)
Unlike other medical technologies that are limited to professional use, the neonatal monitor may become part of the day-to-day life of the hospitalized child’s parent. Researchers have conceptualized it as an “obstructive barrier” to a parent interacting with his or her child in sight and touch (Lantz & Ottosson, 2013). With time and experience, however, parents may gain access to their child, with the medical technology cast to the “background” (Heermann, Wilson, & Wilhelm, 2005). Still positioned adjacent to the child’s bed, we may wonder; Is the monitor simply there, situated off to the side? Or does the monitor have the capacity to continue to mediate parental perceptions, adumbrating their actions as a ground configuration for everyday life?
Methodology The aim of this study was to explore eidetic meaning aspects of the monitor from the perspective of the parent whose newborn child requires medical care in a neonatal intensive care unit (NICU). Eidetic meaning aspects refer to possible unique or more invariant patterns of meaning that make a particular phenomenon what it is (its “whatness”). Phenomenology of practice, a context-sensitive form of interpretive inquiry, was employed (M. van Manen, 2014). Phenomenology of practice is a reflective study of prereflective experience that carries the capacity to cultivate ethically sensitive understandings and morally appropriate actions in the caregivers of children (M. van Manen, 2007. M. A. van Manen, 2014). As a human science research methodology, phenomenology of practice represents a blending of philosophical, human science, and philological methods (M. van Manen, 2014).
Philosophical Methods Attentiveness to the lived experience of a technology expresses an application of the philosophical method of the reduction: “leading back” (reducere) to the way in 1
University of Alberta, Edmonton, Alberta, Canada
Corresponding Author: Michael A. van Manen, John Dossetor Health Ethics Centre, 5-16 University Terrace, 8303 – 112 Street, University of Alberta, Edmonton, Alberta, Canada, T6G 2T4. Email: [email protected]
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van Manen which a technology may shape, structure, or ground experiences as we live through them. We are concerned with exploring and explicating how a technology may constitute lived experience—recognizing that the technology itself may be seemingly passed over by virtue of our proximity to it (Thomson, 2009). Merleau-Ponty (1945/1962) wrote that the method of the reduction may be articulated as taking up an attitude of “radical reflection” on “unreflective life” whereby we attend to how an experience is lived prior to conceptualization or theorization (p. xvi). The reduction consists of slackening “the intentional threads which attach us to the world and thus brings them to our notice” (p. xv). Technologies may constitute these “threads” such that lived experience itself is ultimately technologically “mediated” (Ihde, 1990). So for a phenomenology of technology, we need to consider the formative, inextricable intertwining of self, technology, and world (or others) in reflecting toward lived experience.
Human Science Methods The researcher undertaking phenomenology as a human science research method utilizes qualitative empirical methods to gather examples of a possible experience: lived experience descriptions (M. van Manen, 1990). For this study, parents were recruited for interview from four local hospital nurseries in a western province of Canada spanning the scope of acuity seen in neonatal intensive care. In total, experiences from 10 parents who had a child admitted to a neonatal intensive care unit were elicited by audio-recorded interviews. Admitting diagnoses included prematurity, congenital anomalies, and transitional problems. Parents ranged in age, ethnicity, education, and socioeconomic background. Most were interviewed on multiple occasions spanning the duration of their child’s admission to NICU. In keeping with this phenomenology of practice, reflective methods were used to identify and reflect on lived meaning aspects of the phenomenon as a starting point for phenomenological writing (M. van Manen, 1990). The follow-up interviews allowed parents to revisit their experiences and explore certain meanings of their experiential descriptions. Relevant literature in health, social sciences, and continental philosophy complemented the analysis.
Philological Methods Philological describes aspects of language, writing, and reading, which have methodological significance for phenomenology of practice. Through writing, the researcher aims to describe, explicate, and evoke understandings that may even lie even beyond the reach of propositional
discourse (M. van Manen, 1997). Said differently, the ambition of phenomenological writing is contact with the lived meaning of a phenomenon in order for the reader to be able to be touched by it (M. van Manen, 2002). Thematic statements were formulated as “figures of meaning” to help point to possible eidetic meaning aspects of the phenomenon (M. van Manen, 1990). These thematic statements were used to structure the presentation of anecdotes and research text. Anecdotes were constructed from the interview material and refined to attend to the subjective rather than objective aspects of the monitor experience (M. van Manen, 1989). As in other phenomenological studies, no effort was made to verify the factual content of the anecdotes (M. A. van Manen, 2012b, 2014). The function of the anecdote is simply to portray the experiential event as the parent may have felt and experienced it to arrive at plausible descriptions of possible human experiences (M. van Manen, 1990). Phenomenological writing is a descriptive and questioning endeavor directed to allow the reader to experience heuristic questioning, experiential richness, interpretive depth, strongly incarnated meaning, reflective rigor, evocative awakening, and situated epiphany (M. van Manen, 2014). As in other studies, to strengthen the writing, drafts of the text were reviewed with diverse groups of health care team members (physicians, nurses, respiratory therapists, dieticians, social workers) and parents of children who had been cared for in the NICU to ensure that the descriptions and reflections resonated with lived life, triggering instants of recognition and invoking immanent (subjectively felt) phenomenological evidence (M. A. van Manen, 2012b, 2014).
Ethical issues Permission to conduct this study was obtained from the university health ethics review board and appropriate administrative health authorities. Strategies to diminish the possibility of participant identification included use of pseudonyms, careful selection of anecdotal examples, and alteration of specific distinguishing information. To avoid conflict of interest between my roles as researcher and clinician, I neither enrolled nor interviewed families at a time when I was involved in their care.
Findings The research text has been composed around eidetic meaning aspects of possible parental experiences of the neonatal monitor: (a) the neonatal monitor experienced as baby and as monitor; (b) the experience of the monitor as artifactual connection; (c) the experience of the monitor as the spectral trace of my-child; (d) the experience of the
998 monitor as my-self as parent intertwined with monitor; and (e) the experience of the monitor as my-child transformed. In reading this text, the reader may ask questions such as: What may the experience of the neonatal monitor be like for a parent? What role may the neonatal monitor play in a parent’s everyday routines and unexpected experiences? How may the monitor affect a parent’s relation with his or her child?
The Neonatal Monitor Experienced as Baby and as Monitor As the parent enters the medical nursery, the baby may be sleeping but the screen face of the monitor is always awake. The monitor displays a salutation without reciprocity or questioning. There is no courteous “hello,” or interested “How are you?” Rather, the monitor displays a comment, a picture, a representation of how things are with the child. For a parent, looking to this screen may become a routine way of seeing his or her child on display: Each day here I start the same way. I have a routine. I walk into the nursery, shelve my pumped breast milk in the refrigerator, wash my hands, and then make my way to Ava’s spot. I see the monitor first. I check the screen just by watching for a few moments. If everything reads well, I hardly notice how it holds my attention as I lay my lunch and books on the shelf. Then I turn to look into her isolette, to catch a glimpse of her face, if she is lying just right. I try to find her nurse to check in. After that I seat myself in a chair to read a book while keeping my eye occasionally on the monitor. I usually half read my book for an hour or so, before I finally have a chance to disturb her.
How does a parent see his or her child when they encounter the monitor screen? And perhaps more pointedly, how is the child mediated by this technology? Objectively, what the screen shows is neither a video of the child’s face nor a recording of the child’s voice; rather, it is a real-time, continuous display of colored numerals and penciled graphics: Emma is having a good day. She has had only a few dips in her saturation really, just clustered around her nursing cares. Her temperature has been stable despite me holding her for over an hour. And her heart rate has been hovering nicely in the one-sixties. She seems in a nice balance, in a good place.
To see the child on the monitor, the parent learns to read the meaning of graphic codifications: bradycardia (slow heart rate), tachycardia (fast heart rate), apnea (pause in breathing), desaturation (drop in oxygen content), and so forth. In this way, there is a hermeneutic aspect to the relational mediating role of the monitor as the parent engages in “referential seeing,” interpreting
Qualitative Health Research 25(7) each number in reference to the child to see more than what the naked eye can see (Ihde, 1990): I look at the monitor screen ’cause my eyes just happen to follow it. ’Cause, I want to see if he is breathing okay, if his heart is beating okay, if he is okay. And it is always fine. I always look at it just to know what is going on inside of him.
By means of numbers and waveforms, the parent may see his or her child on the neonatal monitor as a measured being—a being that is either in a stable or unstable state. Regular numerals and patterns sooth parental worry, whereas atypical measurement indices raise parental concern. Being attentive to the child becomes being attentive to the monitored aspects of the child: Sitting in a chair beside her isolette, I can go for hours watching the monitor. If she is not ringing, if she is having a good day, there is no need to look in. I often only get up to stretch my legs.
Whether the child is deep in sleep or wide awake, the monitor is constantly and actively measuring things. We could say that the NICU monitor is the exemplary advisor—the Latin monitor “who reminds, admonishes, or checks,” from monere—”to tell, warn, advise.” It is regarded as a trusted, unbiased informant, uninfluenced by emotions or ulterior motives. After all, its sensors attach directly to the baby’s body, providing a constant, real-time readout of necessary information. The monitor enframes the parent into a watchful way of being-with his or her child. The state of the premature or sick infant who is contained within the medical isolette, below the canopy of technological wires and equipment, is held artificially open, always available. Being in a constant state of audience becomes part of the parents’ way of being-with the child as the monitor screen becomes a reassuring face for the child’s being. So much so that parents may not want to interrupt the presentation. They may be less inclined to check on the bodily being of their child, as that responsibility is surrendered to the technology. Instead, the parents take on the role of watching the watchful monitor screen— “seeing” the child without seeing their child: One day I was sitting with her, and the monitor was dinging. It often dings and stops, dings and stops, so I gave it little thought. I thought it was within her normal pattern. After about five or ten minutes of it dinging, I finally got up and looked into the isolette. She was irate, thrashing around in there. She had soaked through her diaper. I could not help but wonder how long she had been like that, in there.
Available and unavailable, the web of monitoring wires frees the child from being touched and seen as a
van Manen flesh and blood person. Touching the child may only interfere with the monitor trace, disturbing its regularity. Thus, the monitor may discourage parental action and active affection. Ambiguously, the monitor may be experienced not only as the being of the child, but also as the monitor of the child.
The Experience of the Monitor as Artifactual Connection By nature of its technology, the monitor connects child with parent, making visible what is invisible and concealed. Vital numbers are brought into presence—heart rate, respiratory rate, and so forth—available for anyone and everyone to see. Unless parents have spent some time in the NICU, this data is neither familiar material nor meaningful information in its own right. Even an experienced mother or father is unlikely to know exactly what the child’s heart rate or respiratory rate should be, let alone more complex measures like oxygen saturation or end-tidal carbon dioxide: The first time I held him, they put me in a deep reclining chair. I basically lay in that chair ready to receive him on my bare chest as they moved him over with all of his monitoring wires and medical tubes. As the nurses put him on my chest, he did not move, he did not cry. He lay on my chest, his skin soft and warm. I was scared. He seemed so small and fragile. Vulnerable. I held him so lightly. I was worried that he could fall, or that I may bend his neck the wrong way. The nurses said that there is no need to worry, the monitor machine will tell us what is going on. I watched the monitor to make sure his heart was beating, to make sure he was breathing. Yet when I heard a beep, it was never his beeping, it always came from another baby’s bed. I kept looking. My eyes looking at his heart beats, looking at his breathing. I always kept my eyes on the screen to make sure that I was not hurting him in anyway. My eyes were always on the monitor. Never off it. I kept wondering though if I wanted to hear it beep? To hear it alarm?
Parents in being-with their newborn may look away from their child’s face and body to look at the monitor display, distrusting their own natural unmediated sensibilities. Still, the monitor connection may be puzzling for the parent. So much so that the parent may desire to hear the alarm, just to know that the monitor is capable of responding. In time, the parent may gain a more nuanced and sophisticated understanding of the measure of the monitor: We had just come back from a short break, and when we walked into her room the monitor was ringing. Her saturations were all over the place, desaturation after desaturation. She was up on her oxygen, and her heart rate
999 was going so very fast. The only time it seemed to slow down was when it plummeted with a brady. It was so unlike her. We could tell from the graph that it had been going on the entire time we were away. We knew then that she was getting sick. Her face? Her body? I don’t remember how she looked although I am sure that she would have not looked good with those numbers.
Connected, the parent may continue to feel invited to look at the displayed vital signs before looking at the child’s bodily being with increased knowledge of child and technology. By emphasizing medical dimensions, other physical aspects of the child may be overlooked— the child’s face, the child’s mood, and so forth. The inner workings of the monitor—computer systems filtering out false alarms, recording and reviewing data, performing trend analysis, and other sophisticated functions—tend to be passed over unless the technology itself is clearly not functioning well. So, the parent tends to experience the monitor information in its immediacy as factuality. However, what parents are seeing on the screen is actually the result of software and hardware that has been designed to artificially fashion, extract, and abstract physiologic measures of the child. In other words, the construction of this factuality as artifactuality is overlooked (Derrida & Stiegler, 1996/2002): Bathing was the first time we handled her without the monitor. They turned the monitor off because they put her into the tub with the leads on so we could take them off more gently. And I just remember thinking to myself, how will we know whether she is saturating or not? I know the nurse had explained that her lips will turn blue (which we have seen). But we didn’t know if she is saturating at ninety percent or eighty percent or seventy percent. So that was a big thing for me. Because her lips only turn blue when she is at fifty or sixty percent. So in my mind, I am thinking, we have gone through all of this, always attending to the numbers, and what is the point if it does not matter? If it does not matter whether she is saturating at seventy to ninety percent? Like what is the point of these numbers if you can just turn them off?
Disconnecting the monitor may draw the parent into questioning the meaning and significance of these representational values. Turning off the monitor may lead the parent to question the artifactuality of the monitor screen: In the beginning, the monitor was never wrong. I would never question it. It is only now, after months of being here, that I can look back, think back to it, and question the monitor. All of those desaturations, I mean, I don’t know whether the monitor always picked things up correctly? ’Cause now, I will look at him, and sometimes, I’ll just see him. He is not “blue” by any means and the monitor is reading in the fifties. In the fifties, his color should be off,
1000 and it is not. So now I am actually thinking that the monitor is sometimes not always correct?
The parent may be unable to look away from the monitor to just see his or her child—unable to accept that this cyber reality is only represented reality. A common experience is the mother who, on attempting to breastfeed her child, continues to look to the monitor rather than to the child in front of her. Alternatively, the parent may not recognize the discomfort of the child because the monitor shows nothing abnormal. After all, it is vital information that is shown on the monitor screen, and what remains absent, is likely of secondary concern.
The Experience of the Monitor as the Spectral Trace of My-Child I was pretty scared when they turned off the monitor. Anxiety. It was a stressful moment. It felt like it lasted for a long time. It was two and a half months of every day coming in and watching it, and then to have that monitor shut off. I was not ready for it. I’m still not ready for it. But it is getting better. I am having more confidence in my son and myself. I am starting to look at him, learn his language, his signs. But I am not anywhere near the point of feeling comfortable taking him off the monitor. I am not ready to not see him on the screen.
The response to the monitor is less a function of its luminosity, its “screenness,” than of what the screen displays. For the parent, this screen displays “my-child.” By covering the child with its probes, the monitor uncovers the child in a particular way to be seen, observed, and watched over. What the monitor displays is not simply the being of my-child, but a trace of my-child. And even this trace is not a presence but the illusory image of a presence. Derrida (1967/1978) wrote, The trace is not a presence but is rather the simulacrum of a presence that dislocates, displaces, and refers beyond itself. The trace has, properly speaking, no place, for effacement belongs to the very structure of the trace. (p. 403)
The image displayed on the monitor screen is both the graphical trace of continuous measurement as well as the Derridian trace marking the absence of a presence. Although parents may look to the monitor to see their child, they never quite “see” their child, as the monitor trace is but a drained presence, a retained and constructed simulation of the child. Still, the trace is not an insignificant phenomenon. It exerts a relational push and pull on the parent. The monitor trace is the spectral image of mychild; the specter is my-child calling on the parent, without permitting the parent a reciprocal response. The monitor screen is not to be stroked, held, embraced, or talked with in motherese loving expressions:
Qualitative Health Research 25(7) The specter is not simply this visible invisible that I can see; it is someone who watches or concerns me without any possible reciprocity. . . . The specter enjoys the right of absolute inspection. He is the right of inspection itself. (Derrida & Stiegler, 1996/2002, p. 121)
Unlike the specter image captured by photo, painting, or other visual media, the specter of the monitor lacks physiognomic features of a human being. The specter shows itself through waveforms and numbers. Still, the trace causes concern, evokes responsibility, demands attention: I remember coming in one day and the formatting on the monitor had changed. It was all wrong. The blood pressure waveform was now turquoise. The numbers had shifted in position. Some fonts were too big, others too small. It was not right. I felt uncomfortable, apprehensive. I did not recognize my child’s space at first. Yet it was his nametag on the isolette. My novel was still on the shelf where I had left it the evening before. I immediately asked the nurse, “Can you turn it back to the way it was? Can you make it look normal, like it is supposed to be?”
The specter child is a matter of the visible invisible. By way of the visible, the parent may come to expect and anticipate a familiar appearance to the monitor. So when the pattern changes, the parent is left in a situation of relational ambiguity—existential uncertainty: We had a new nurse last night, and we found it really hard to leave. He was having so many desats. The nurse said it was because the room was noisy, but we could just not accept that. I know my son’s pattern, and this was not him. Something more was going on that the nurse was just not seeing.
As the parent comes to know the trace of his or her child, the expertise of a new nurse or other health professional may be called into question rather than the functioning of the familiar neonatal monitor screen. The parent may see the trace of the child in a way that the professional just does not appreciate. It is the trace of my-child.
The Experience of the Monitor as My-Self as Parent Intertwined With Monitor I have tried to hold his hand by positioning my fingers just so between his fingers so he would grasp mine. He has always been shaking too much from the cooling blanket. He has always been withdrawn. But today was different. I called his name, and he opened his hand, then he held my finger. And it was like “Mom, you are here, you are here for me.” I had very strong feelings. I think he had the same feelings, just like mine. Like you know when you hold something
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van Manen very strongly, the base of your nails turns white. Well, his fingers were white when he held my finger. He was holding my finger so very strongly. He wasn’t holding my hand, he was holding my finger, because he wanted to do that. And then I told him, “You’re going to be okay.”
This mother described moments of naked perception: an embodied parental being-with child as other in a world of bodily perception. Here, the mother encountered her child as an other who was so very much like her—of her, from her—yet visibly and invisibly other than her. In this place, the body is perspectival and perspective emerges out of the very stuff of the world (Merleau-Ponty, 1964/1968). Still, this moment, this way of being together as self and other, may be violently interrupted by the technology: And just then I heard the monitor beeping. At first, I thought it was from another child’s machine. Then, I realized that it was from my David’s machine. It told that something was not normal. I looked away from David to the screen. I was scared. What have I done? Have I loosened a connection? Or dislodged something? I was worried. Maybe his blood pressure is going down? Maybe his breathing has stopped? I turned to the nurse who was there. She just watched the screen. At first she did not say anything, then she said, “Don’t worry, it is okay to touch your baby.”
may become part of the parent’s being-in-the-world. The monitor is not just a bodily extension of the child; it is also a bodily extension of the parent. The monitor is woven into the intersubjectivity of parent as self and child as other—a way of being whereby technology vascularizes the flesh of a common world. As technology weaves into this substancing matrix; self and other are permeated, invigorated, imbued by its essence. In this way, the child and parent are transformed. We may wonder: Whose and what body is this monitor? A few days ago, the nursery was really quiet. A number of the nurses were on break, and the babies were all being so quiet. There was no ringing of monitors, just the airy sound of the breathing machines. It was eerie in its stillness. I just did not feel right. I could not get comfortable in there. I found myself talking out loud to myself, just so I felt normal.
Unable to feel “right” without the technological presence, parents may feel uncomfortable and unfamiliar in a silent world—a world without machine—as their own bodies feel strange.
The Experience of the Monitor as My-Child Transformed
When the monitor alarms, the parent who had begun to simply be-with his or her child, may turn away, to look at the monitor screen. Sometimes, the monitor may merely be in the background. It may signify the felt presence of others—the nurse, the physician, or other health care professional—responsibly watching over the parent and child. The monitor may be-there “for me” as the parent:
I remember the feelings, holding my daughter in those first days. I was in shock. My one-pound baby girl. Just holding her with those monitors. It was a happy moment, but at the same time, I felt like that moment had been taken away from me. You never think about holding your baby full of tubes, covered in cords. Every time the monitor would beep it was like, what is going on? It was very emotional. I could not look at her without looking at the monitors.
We have moments of privacy. Moments of just him and me. When the curtains are closed around us and I hold him against my skin. I feel his warmth, his chest rise and fall, skin to skin. It is wonderful. But, we are never alone. I am never worried. The monitor will alarm if anything is wrong and the nurses will come running.
When babies are born it almost seems natural that they be left naked or swaddled to be maintained in their innocence. Dressing an infant even in clothes is almost unnatural as the baby may be made to appear prematurely like a little adult. Parents may expect to see their baby in their naïve, untouched nakedness. When a child is monitored, the child may be experienced as transformed. Adorned with probes, intravenous lines, and other medical paraphernalia, the child is visibly and invisibly transformed. The parent is no longer holding the newborn child; rather, the newly born is reborn as cyborg. What is a cyborg? A cyborg is more than a blending of human and technology. For example, the utilization of contact lenses or an artificial limb to restore biological capabilities may seem no more cybernetic than a pair of glasses or a cane, especially if the gained functionality is only restorative. Likewise, an infant fitted with a mechanical heart or insulin pump perhaps should not be experientially considered as cyborg if these medical modifications only sustain physiologic function in the context of organ
If we probe deeper we may wonder: Is the monitor truly ever just behind or beside the parent and child? Is it just the body of the child that is monitored? Or does the monitor somehow extend its reach beyond the child to the parent? Sometimes after I leave the nursery and lay at home in my bed I still hear it. I still hear the room. I hear the alarms ringing in my head—the regular, irregular ringing. My house can feel so uncanny and quiet. There is a certain familiarity to that sound after a while. It is hard to leave that room.
The parent, who dwells in the nursery, is embodied in relation to the neonatal monitor. The rhythm of sounds
1002 disease. So, how is it that a noninvasive monitor is capable of invoking cyborgification? When you get used to it, you forget about it. I held her this morning before you came. It took three people to place her on me. The respiratory therapist held her tube, and her nurses took care of the wires and intravenous lines. I just held her then for a couple hours. As the monitor rang for a desaturation, and her breathing paused, I would rub her back. The trace returns to baseline and her breathing steadies. She comes up so well. Without even looking, I hear her come up. I can feel against my chest when she needs a suction. It is a wet, vibratory feeling, then the machine rings tube obstruction until we suction her out. I don’t really look at the monitor more than I look at her face, her body, or any of the other medical instruments. But I constantly know how the monitor reads. I am always listening for the monitor, I am always listening for her.
The calling sounds of child and monitor, and the parent as present, responsive, responsible. Attentive and caring, the parent may sense the child both through the monitor and through his or her bodily being. As the child comes up from desaturation, bodily breathing normalizes and the trace on the screen steadies. Child and monitor respond. This embodied experiencing of my-child may be in both the parent’s experiencing of raw bodily reverberations and the synthetic monitor sounds. And so, the experience of contact is perhaps neither wholly in the physical nor in the virtual; rather, it is in the intertwining of encroaching aspects of reality and a screen-mediated cyber reality. The cyborgian technology may be intricately woven into the embodied intersubjectivity of the sentient (hearing, touching, and looking) and the sensible (being heard, being touched, being seen). Here, the monitor weaves and is woven into the relation of parent and child. It may be difficult to untangle and work out the connecting wires of the monitor. It may be difficult to just see my-child without his or her cyborgian shell: I have been pumping throughout Taylor’s entire NICU stay so I was really excited when the doctors said that I could try and breastfeed Taylor. I have a strong let down so before I even had a chance to put him against my nipple I was already leaking. I tried to get him latched, and every time he seemed to start sucking, the monitor would ring. I don’t know if it was the position, the way I was holding his head, but I just could not do it. I kept looking up at the monitor like, “Yeah, I get it . . . this is not working.” But he did seem to be trying.
The parent may experience the mixed messaging of my-monitor-child. Monitor and child may be given to parental experience as entangled, knotted, crisscrossed. So much so, a mother may be unable to see the sole physical presence of her son successfully nursing from her
Qualitative Health Research 25(7) very body, as embodied perception may be in the blending of trace and child. In this way, the cyborg child emerges. Seeing just my-child, looking away from the monitor, may be experienced as almost impossible.
Concluding Comments The neonatal monitor may affect parental sensibilities, and reshape the way that the child is experientially given to the parent. Seemingly, just like other things, the neonatal monitor may be understood to bear morality because it mediates parental perceptual experiencing from which (moral) decisions may be made (Verbeek, 2000/2005). As the monitor is woven into human relationships, the monitor may carry more ethical significance than other seemingly ordinary things. The monitor penetrates the ethical moment, the ethicity of ethics, as it weaves into the relation of self and other, parent and child. The technological intertwinement of self-technologyother or parent-monitor-child is not necessarily a regretful thing. Medically, the monitor is used because it has a necessary clinical role in monitoring the sick or premature child. Its utility is not in question. Still, in exploring the way that it pervades the experiencing of self and other, the neonatal monitor can hardly be said to be neutral. The monitor may regulate behavior in unrecognized ways. So, although there is a medical need for monitoring technologies, the question remains: How should these technologies be used if they truly are so noninvasive? Perhaps the answer begins with the word “reflectively.” When neonatal monitoring is available, the first question to be asked is, “Should or ought it be used?” And, “Does this particular child really need to be displayed on a screen?” And then, of the monitored child, “Does this child still need to be monitored?” If yes, “Are there at least some times when it may be safe to lay the monitor aside so being-with my-monitor child is solely being-with my-child?” These questions speak to a turning of the parent back to the child as child, rather than child as technologized cyborg child—an engagement with reality (Borgmann, 1999). There are also questions to be asked of the technology itself. In the design of monitors and related paraphernalia, is there a way to make them more sensitive to the developing relation of parent and child? Designers should answer the plea for a morality of machines (Achterhuis, 1998). Medical equipment engineers ought to build an awareness of the ethical relations lived every day through their novel technologies. As such, should the default functioning be a limited display, or perhaps a display that dims, fades away, when vitals are within normal limits? Beyond the display, attention to the development of wireless (or even electrode-less) monitors that may make it that much easier to just hold my-child, or move my-child
van Manen connected yet disconnected away from the neonatal monitor screen is surely needed. Imaginably, the developing parent–child relation should serve as motivation for design innovation. Ultimately, a phenomenology of the parental experience of the neonatal monitor screen perhaps speaks most to the thoughtful, tactful, and often tacit dimensions of clinical practice in understanding the ethical relation of self-technology-other. The physician, nurse, or other health care provider who uses the monitor is not just a technician, but rather a careful, caring professional. As technology becomes more pervasive and perhaps more transparent, it is crucial for practitioners to gain a renewed understanding of how parents experience being-with their children in the medical lifeworld. The neonatal monitor provides but one ordinary example for consideration in the manifolds of machinery in technologized medical health care. Acknowledgments I am very grateful to the parents who generously shared their experiences for this study. I also thank Wendy Austin, Paul Byrne, Catherine Adams, and Po-Yin Cheung for their ongoing guidance and support.
Author’s Note Portions of this article were presented and published in the Proceedings of “McLuhan’s Philosophy of Media”—Centennial Conference/Contact Forum, 26–28 October 2011 (M. A. van Manen, 2012a).
Declaration of Conflicting Interests The author declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding The author disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Canadian Institute for Health Research Doctoral Research Award—Frederick Banting and Charles Best Canada Graduate Scholarships [201110GSD].
References Achterhuis, H. (1998). De erfenis van de utopie [The legacy of utopia]. Baarn, The Netherlands: Ambo. Borgmann, A. (1999). Holding on to reality: The nature of information at the turn of the millennium. Chicago: University of Chicago Press. Derrida, J. (1978). Writing and difference. (A. Bass, Trans). Chicago: University of Chicago Press. (Original work published 1967)
1003 Derrida, J., & Stiegler, B. (2002). Echographies of television. (J. Bajorek, Trans.). Cambridge, United Kingdom: Polity Press. (Original work published 1996) Heermann, J. A., Wilson, M. E., & Wilhelm, P. A. (2005). Mothers in the NICU: Outsider to partner. Pediatric Nursing, 31(3), 176–181, 200. Retrieved from www.pediatricnursing.net/ Ihde, D. (1990). Technology and the lifeworld: From garden to earth. Bloomington: Indiana University Press. Korones, S. B. (1985). Physical structure and functional organization of neonatal intensive care units. In A. W. Gottfried & J. L. Gaiter (Eds.), Infant under intensive care: Environmental neonatology (pp. 7–22). Baltimore, MD: University Park Press. Lantz, B., & Ottosson, C. (2013). Parental interaction with infants treated with medical technology. Scandinavian Journal of Caring Sciences, 27(3), 597–607. doi:10.1111/ j.1471-6712.2012.01061.x Merleau-Ponty, M. (1962). Phenomenology of perception. (C. Smith, Trans.). New York: Routledge & Kegan Paul. (Original work published 1945) Merleau-Ponty, M. (1968). The visible and the invisible. (A. Lingis, Trans.). Evanston, IL: Northwestern University Press. (Original work published 1964) Murković, I., Steinberg, M. D., & Murković, B. (2003). Sensors in neonatal monitoring: Current practice and future trends. Technology and Health Care, 11(6), 399–412. Retrieved from www.iospress.nl/journal/technology-and-health-care/ Thomson, I. (2009). Phenomenology and technology. In J. K. B. Olsen, S. A. Pedersen, & V. F. Hendricks (Eds.), A companion to the philosophy of technology (pp. 195–201). West Sussex, United Kingdom: Blackwell. van Manen, M. (1989). By the light of anecdote. Phenomenology + Pedagogy, 7, 232–253. Retrieved from http://ejournals. library.ualberta.ca/index.php/pandp/index van Manen, M. (1990). Researching lived experience: Human science for an action sensitive pedagogy. London, ON, Canada: Althouse Press. van Manen, M. (1997). From meaning to method. Qualitative Health Research, 7(3), 345–369. doi:10.1177/ 104973239700700303 van Manen, M. (2002). Writing in the dark: Phenomenological studies in interpretive inquiry. London, ON, Canada: Althouse Press. van Manen, M. (2007). Phenomenology of practice. Phenomenology & Practice, 1(1), 11–30. Retrieved from www. phandpr.org/ van Manen, M. (2014). Phenomenology of practice: Meaninggiving methods in phenomenological research and writing. Walnut Creek, CA: Left Coast Press. van Manen, M. A. (2012a). The medium, the message, and the massage of the neonatal monitor screen. In Y. Van Den Eede, J. Bauwens, J. Beyl, M. Van den Bossche, & K. Verstrynge (Eds.), Proceedings of ‘McLuhan’s Philosophy of Media’—Centennial Conference / Contact Forum, 26–28 October 2011. Brussels, Belgium: Royal Flemish Academy of Belgium for Science and the Arts.
1004 van Manen, M. A. (2012b). Carrying: Parental experience of the hospital transfer of their baby. Qualitative Health Research, 22(2), 199–211. doi:10.1177/1049732311420447 van Manen, M. A. (2014). On ethical (in)decisions experienced by parents of infants in neonatal intensive care. Qualitative Health Research, 24(2), 279–287. doi:10.1177/1049732313520081 Verbeek, P.-P. (2005). What things do: Philosophical reflections on technology, agency, and design. (R.P. Crease,
Qualitative Health Research 25(7) Trans.). University Park: Pennsylvania State University Press. (Original work published 2000)
Author Biography Michael A. van Manen, MD, FRCPC(Peds,NICU,CIP), PhD, is a clinician researcher in neonatal-perinatal medicine, Department of Pediatrics, University of Alberta, Edmonton, Alberta, Canada.
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QHRXXX10.1177/1049732314554101Qualitative Health Researchvan Manen
Article
The Ethics of an Ordinary Medical Technology
Qualitative Health Research 2015, Vol. 25(7) 996–1004 © The Author(s) 2014 Reprints and permissions: sagepub.com/journalsPermissions.nav DOI: 10.1177/1049732314554101 qhr.sagepub.com
Michael A. van Manen1
Abstract Some routinely applied hospital technologies may have unintended consequences for patients and their families. The neonatal cardiorespiratory monitor, a computer-like display used to show an infant’s vital functions, is one such technology that may become part of a parent’s day-to-day being with his or her hospitalized child. In this phenomenological study, I explored how the monitor may mediate parental sensibilities, reshaping the contact of parent and child. This exploration speaks to understanding the relational ethics of even the seemingly most ordinary of medical technologies in clinical contexts. Keywords ethics / moral perspectives; infants; lived experience; phenomenology; qualitative; van Manen For health care professionals, the use of certain medical technologies may be considered noninvasive. These technologies may be used so routinely and indiscriminately that they come to be a taken-for-granted part of the medical lifeworld. An example is the neonatal cardiorespiratory monitor, a display used to show a hospitalized infant’s vital functions (Murković, Steinberg, & Murković, 2003). The screen is designed for monitoring the child, and to alert the medical staff at times of need: Monitoring devices should have both visual and auditory alarms. The usual audible alarms fill a room with nondirectional sound, making it difficult to identify the source. To combat this problem, red lights can be installed in the ceiling above each infant. They flash when tripped by the monitor and identification of the affected infant is instantaneous. (Korones, 1985, p. 16)
Unlike other medical technologies that are limited to professional use, the neonatal monitor may become part of the day-to-day life of the hospitalized child’s parent. Researchers have conceptualized it as an “obstructive barrier” to a parent interacting with his or her child in sight and touch (Lantz & Ottosson, 2013). With time and experience, however, parents may gain access to their child, with the medical technology cast to the “background” (Heermann, Wilson, & Wilhelm, 2005). Still positioned adjacent to the child’s bed, we may wonder; Is the monitor simply there, situated off to the side? Or does the monitor have the capacity to continue to mediate parental perceptions, adumbrating their actions as a ground configuration for everyday life?
Methodology The aim of this study was to explore eidetic meaning aspects of the monitor from the perspective of the parent whose newborn child requires medical care in a neonatal intensive care unit (NICU). Eidetic meaning aspects refer to possible unique or more invariant patterns of meaning that make a particular phenomenon what it is (its “whatness”). Phenomenology of practice, a context-sensitive form of interpretive inquiry, was employed (M. van Manen, 2014). Phenomenology of practice is a reflective study of prereflective experience that carries the capacity to cultivate ethically sensitive understandings and morally appropriate actions in the caregivers of children (M. van Manen, 2007. M. A. van Manen, 2014). As a human science research methodology, phenomenology of practice represents a blending of philosophical, human science, and philological methods (M. van Manen, 2014).
Philosophical Methods Attentiveness to the lived experience of a technology expresses an application of the philosophical method of the reduction: “leading back” (reducere) to the way in 1
University of Alberta, Edmonton, Alberta, Canada
Corresponding Author: Michael A. van Manen, John Dossetor Health Ethics Centre, 5-16 University Terrace, 8303 – 112 Street, University of Alberta, Edmonton, Alberta, Canada, T6G 2T4. Email: [email protected]
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van Manen which a technology may shape, structure, or ground experiences as we live through them. We are concerned with exploring and explicating how a technology may constitute lived experience—recognizing that the technology itself may be seemingly passed over by virtue of our proximity to it (Thomson, 2009). Merleau-Ponty (1945/1962) wrote that the method of the reduction may be articulated as taking up an attitude of “radical reflection” on “unreflective life” whereby we attend to how an experience is lived prior to conceptualization or theorization (p. xvi). The reduction consists of slackening “the intentional threads which attach us to the world and thus brings them to our notice” (p. xv). Technologies may constitute these “threads” such that lived experience itself is ultimately technologically “mediated” (Ihde, 1990). So for a phenomenology of technology, we need to consider the formative, inextricable intertwining of self, technology, and world (or others) in reflecting toward lived experience.
Human Science Methods The researcher undertaking phenomenology as a human science research method utilizes qualitative empirical methods to gather examples of a possible experience: lived experience descriptions (M. van Manen, 1990). For this study, parents were recruited for interview from four local hospital nurseries in a western province of Canada spanning the scope of acuity seen in neonatal intensive care. In total, experiences from 10 parents who had a child admitted to a neonatal intensive care unit were elicited by audio-recorded interviews. Admitting diagnoses included prematurity, congenital anomalies, and transitional problems. Parents ranged in age, ethnicity, education, and socioeconomic background. Most were interviewed on multiple occasions spanning the duration of their child’s admission to NICU. In keeping with this phenomenology of practice, reflective methods were used to identify and reflect on lived meaning aspects of the phenomenon as a starting point for phenomenological writing (M. van Manen, 1990). The follow-up interviews allowed parents to revisit their experiences and explore certain meanings of their experiential descriptions. Relevant literature in health, social sciences, and continental philosophy complemented the analysis.
Philological Methods Philological describes aspects of language, writing, and reading, which have methodological significance for phenomenology of practice. Through writing, the researcher aims to describe, explicate, and evoke understandings that may even lie even beyond the reach of propositional
discourse (M. van Manen, 1997). Said differently, the ambition of phenomenological writing is contact with the lived meaning of a phenomenon in order for the reader to be able to be touched by it (M. van Manen, 2002). Thematic statements were formulated as “figures of meaning” to help point to possible eidetic meaning aspects of the phenomenon (M. van Manen, 1990). These thematic statements were used to structure the presentation of anecdotes and research text. Anecdotes were constructed from the interview material and refined to attend to the subjective rather than objective aspects of the monitor experience (M. van Manen, 1989). As in other phenomenological studies, no effort was made to verify the factual content of the anecdotes (M. A. van Manen, 2012b, 2014). The function of the anecdote is simply to portray the experiential event as the parent may have felt and experienced it to arrive at plausible descriptions of possible human experiences (M. van Manen, 1990). Phenomenological writing is a descriptive and questioning endeavor directed to allow the reader to experience heuristic questioning, experiential richness, interpretive depth, strongly incarnated meaning, reflective rigor, evocative awakening, and situated epiphany (M. van Manen, 2014). As in other studies, to strengthen the writing, drafts of the text were reviewed with diverse groups of health care team members (physicians, nurses, respiratory therapists, dieticians, social workers) and parents of children who had been cared for in the NICU to ensure that the descriptions and reflections resonated with lived life, triggering instants of recognition and invoking immanent (subjectively felt) phenomenological evidence (M. A. van Manen, 2012b, 2014).
Ethical issues Permission to conduct this study was obtained from the university health ethics review board and appropriate administrative health authorities. Strategies to diminish the possibility of participant identification included use of pseudonyms, careful selection of anecdotal examples, and alteration of specific distinguishing information. To avoid conflict of interest between my roles as researcher and clinician, I neither enrolled nor interviewed families at a time when I was involved in their care.
Findings The research text has been composed around eidetic meaning aspects of possible parental experiences of the neonatal monitor: (a) the neonatal monitor experienced as baby and as monitor; (b) the experience of the monitor as artifactual connection; (c) the experience of the monitor as the spectral trace of my-child; (d) the experience of the
998 monitor as my-self as parent intertwined with monitor; and (e) the experience of the monitor as my-child transformed. In reading this text, the reader may ask questions such as: What may the experience of the neonatal monitor be like for a parent? What role may the neonatal monitor play in a parent’s everyday routines and unexpected experiences? How may the monitor affect a parent’s relation with his or her child?
The Neonatal Monitor Experienced as Baby and as Monitor As the parent enters the medical nursery, the baby may be sleeping but the screen face of the monitor is always awake. The monitor displays a salutation without reciprocity or questioning. There is no courteous “hello,” or interested “How are you?” Rather, the monitor displays a comment, a picture, a representation of how things are with the child. For a parent, looking to this screen may become a routine way of seeing his or her child on display: Each day here I start the same way. I have a routine. I walk into the nursery, shelve my pumped breast milk in the refrigerator, wash my hands, and then make my way to Ava’s spot. I see the monitor first. I check the screen just by watching for a few moments. If everything reads well, I hardly notice how it holds my attention as I lay my lunch and books on the shelf. Then I turn to look into her isolette, to catch a glimpse of her face, if she is lying just right. I try to find her nurse to check in. After that I seat myself in a chair to read a book while keeping my eye occasionally on the monitor. I usually half read my book for an hour or so, before I finally have a chance to disturb her.
How does a parent see his or her child when they encounter the monitor screen? And perhaps more pointedly, how is the child mediated by this technology? Objectively, what the screen shows is neither a video of the child’s face nor a recording of the child’s voice; rather, it is a real-time, continuous display of colored numerals and penciled graphics: Emma is having a good day. She has had only a few dips in her saturation really, just clustered around her nursing cares. Her temperature has been stable despite me holding her for over an hour. And her heart rate has been hovering nicely in the one-sixties. She seems in a nice balance, in a good place.
To see the child on the monitor, the parent learns to read the meaning of graphic codifications: bradycardia (slow heart rate), tachycardia (fast heart rate), apnea (pause in breathing), desaturation (drop in oxygen content), and so forth. In this way, there is a hermeneutic aspect to the relational mediating role of the monitor as the parent engages in “referential seeing,” interpreting
Qualitative Health Research 25(7) each number in reference to the child to see more than what the naked eye can see (Ihde, 1990): I look at the monitor screen ’cause my eyes just happen to follow it. ’Cause, I want to see if he is breathing okay, if his heart is beating okay, if he is okay. And it is always fine. I always look at it just to know what is going on inside of him.
By means of numbers and waveforms, the parent may see his or her child on the neonatal monitor as a measured being—a being that is either in a stable or unstable state. Regular numerals and patterns sooth parental worry, whereas atypical measurement indices raise parental concern. Being attentive to the child becomes being attentive to the monitored aspects of the child: Sitting in a chair beside her isolette, I can go for hours watching the monitor. If she is not ringing, if she is having a good day, there is no need to look in. I often only get up to stretch my legs.
Whether the child is deep in sleep or wide awake, the monitor is constantly and actively measuring things. We could say that the NICU monitor is the exemplary advisor—the Latin monitor “who reminds, admonishes, or checks,” from monere—”to tell, warn, advise.” It is regarded as a trusted, unbiased informant, uninfluenced by emotions or ulterior motives. After all, its sensors attach directly to the baby’s body, providing a constant, real-time readout of necessary information. The monitor enframes the parent into a watchful way of being-with his or her child. The state of the premature or sick infant who is contained within the medical isolette, below the canopy of technological wires and equipment, is held artificially open, always available. Being in a constant state of audience becomes part of the parents’ way of being-with the child as the monitor screen becomes a reassuring face for the child’s being. So much so that parents may not want to interrupt the presentation. They may be less inclined to check on the bodily being of their child, as that responsibility is surrendered to the technology. Instead, the parents take on the role of watching the watchful monitor screen— “seeing” the child without seeing their child: One day I was sitting with her, and the monitor was dinging. It often dings and stops, dings and stops, so I gave it little thought. I thought it was within her normal pattern. After about five or ten minutes of it dinging, I finally got up and looked into the isolette. She was irate, thrashing around in there. She had soaked through her diaper. I could not help but wonder how long she had been like that, in there.
Available and unavailable, the web of monitoring wires frees the child from being touched and seen as a
van Manen flesh and blood person. Touching the child may only interfere with the monitor trace, disturbing its regularity. Thus, the monitor may discourage parental action and active affection. Ambiguously, the monitor may be experienced not only as the being of the child, but also as the monitor of the child.
The Experience of the Monitor as Artifactual Connection By nature of its technology, the monitor connects child with parent, making visible what is invisible and concealed. Vital numbers are brought into presence—heart rate, respiratory rate, and so forth—available for anyone and everyone to see. Unless parents have spent some time in the NICU, this data is neither familiar material nor meaningful information in its own right. Even an experienced mother or father is unlikely to know exactly what the child’s heart rate or respiratory rate should be, let alone more complex measures like oxygen saturation or end-tidal carbon dioxide: The first time I held him, they put me in a deep reclining chair. I basically lay in that chair ready to receive him on my bare chest as they moved him over with all of his monitoring wires and medical tubes. As the nurses put him on my chest, he did not move, he did not cry. He lay on my chest, his skin soft and warm. I was scared. He seemed so small and fragile. Vulnerable. I held him so lightly. I was worried that he could fall, or that I may bend his neck the wrong way. The nurses said that there is no need to worry, the monitor machine will tell us what is going on. I watched the monitor to make sure his heart was beating, to make sure he was breathing. Yet when I heard a beep, it was never his beeping, it always came from another baby’s bed. I kept looking. My eyes looking at his heart beats, looking at his breathing. I always kept my eyes on the screen to make sure that I was not hurting him in anyway. My eyes were always on the monitor. Never off it. I kept wondering though if I wanted to hear it beep? To hear it alarm?
Parents in being-with their newborn may look away from their child’s face and body to look at the monitor display, distrusting their own natural unmediated sensibilities. Still, the monitor connection may be puzzling for the parent. So much so that the parent may desire to hear the alarm, just to know that the monitor is capable of responding. In time, the parent may gain a more nuanced and sophisticated understanding of the measure of the monitor: We had just come back from a short break, and when we walked into her room the monitor was ringing. Her saturations were all over the place, desaturation after desaturation. She was up on her oxygen, and her heart rate
999 was going so very fast. The only time it seemed to slow down was when it plummeted with a brady. It was so unlike her. We could tell from the graph that it had been going on the entire time we were away. We knew then that she was getting sick. Her face? Her body? I don’t remember how she looked although I am sure that she would have not looked good with those numbers.
Connected, the parent may continue to feel invited to look at the displayed vital signs before looking at the child’s bodily being with increased knowledge of child and technology. By emphasizing medical dimensions, other physical aspects of the child may be overlooked— the child’s face, the child’s mood, and so forth. The inner workings of the monitor—computer systems filtering out false alarms, recording and reviewing data, performing trend analysis, and other sophisticated functions—tend to be passed over unless the technology itself is clearly not functioning well. So, the parent tends to experience the monitor information in its immediacy as factuality. However, what parents are seeing on the screen is actually the result of software and hardware that has been designed to artificially fashion, extract, and abstract physiologic measures of the child. In other words, the construction of this factuality as artifactuality is overlooked (Derrida & Stiegler, 1996/2002): Bathing was the first time we handled her without the monitor. They turned the monitor off because they put her into the tub with the leads on so we could take them off more gently. And I just remember thinking to myself, how will we know whether she is saturating or not? I know the nurse had explained that her lips will turn blue (which we have seen). But we didn’t know if she is saturating at ninety percent or eighty percent or seventy percent. So that was a big thing for me. Because her lips only turn blue when she is at fifty or sixty percent. So in my mind, I am thinking, we have gone through all of this, always attending to the numbers, and what is the point if it does not matter? If it does not matter whether she is saturating at seventy to ninety percent? Like what is the point of these numbers if you can just turn them off?
Disconnecting the monitor may draw the parent into questioning the meaning and significance of these representational values. Turning off the monitor may lead the parent to question the artifactuality of the monitor screen: In the beginning, the monitor was never wrong. I would never question it. It is only now, after months of being here, that I can look back, think back to it, and question the monitor. All of those desaturations, I mean, I don’t know whether the monitor always picked things up correctly? ’Cause now, I will look at him, and sometimes, I’ll just see him. He is not “blue” by any means and the monitor is reading in the fifties. In the fifties, his color should be off,
1000 and it is not. So now I am actually thinking that the monitor is sometimes not always correct?
The parent may be unable to look away from the monitor to just see his or her child—unable to accept that this cyber reality is only represented reality. A common experience is the mother who, on attempting to breastfeed her child, continues to look to the monitor rather than to the child in front of her. Alternatively, the parent may not recognize the discomfort of the child because the monitor shows nothing abnormal. After all, it is vital information that is shown on the monitor screen, and what remains absent, is likely of secondary concern.
The Experience of the Monitor as the Spectral Trace of My-Child I was pretty scared when they turned off the monitor. Anxiety. It was a stressful moment. It felt like it lasted for a long time. It was two and a half months of every day coming in and watching it, and then to have that monitor shut off. I was not ready for it. I’m still not ready for it. But it is getting better. I am having more confidence in my son and myself. I am starting to look at him, learn his language, his signs. But I am not anywhere near the point of feeling comfortable taking him off the monitor. I am not ready to not see him on the screen.
The response to the monitor is less a function of its luminosity, its “screenness,” than of what the screen displays. For the parent, this screen displays “my-child.” By covering the child with its probes, the monitor uncovers the child in a particular way to be seen, observed, and watched over. What the monitor displays is not simply the being of my-child, but a trace of my-child. And even this trace is not a presence but the illusory image of a presence. Derrida (1967/1978) wrote, The trace is not a presence but is rather the simulacrum of a presence that dislocates, displaces, and refers beyond itself. The trace has, properly speaking, no place, for effacement belongs to the very structure of the trace. (p. 403)
The image displayed on the monitor screen is both the graphical trace of continuous measurement as well as the Derridian trace marking the absence of a presence. Although parents may look to the monitor to see their child, they never quite “see” their child, as the monitor trace is but a drained presence, a retained and constructed simulation of the child. Still, the trace is not an insignificant phenomenon. It exerts a relational push and pull on the parent. The monitor trace is the spectral image of mychild; the specter is my-child calling on the parent, without permitting the parent a reciprocal response. The monitor screen is not to be stroked, held, embraced, or talked with in motherese loving expressions:
Qualitative Health Research 25(7) The specter is not simply this visible invisible that I can see; it is someone who watches or concerns me without any possible reciprocity. . . . The specter enjoys the right of absolute inspection. He is the right of inspection itself. (Derrida & Stiegler, 1996/2002, p. 121)
Unlike the specter image captured by photo, painting, or other visual media, the specter of the monitor lacks physiognomic features of a human being. The specter shows itself through waveforms and numbers. Still, the trace causes concern, evokes responsibility, demands attention: I remember coming in one day and the formatting on the monitor had changed. It was all wrong. The blood pressure waveform was now turquoise. The numbers had shifted in position. Some fonts were too big, others too small. It was not right. I felt uncomfortable, apprehensive. I did not recognize my child’s space at first. Yet it was his nametag on the isolette. My novel was still on the shelf where I had left it the evening before. I immediately asked the nurse, “Can you turn it back to the way it was? Can you make it look normal, like it is supposed to be?”
The specter child is a matter of the visible invisible. By way of the visible, the parent may come to expect and anticipate a familiar appearance to the monitor. So when the pattern changes, the parent is left in a situation of relational ambiguity—existential uncertainty: We had a new nurse last night, and we found it really hard to leave. He was having so many desats. The nurse said it was because the room was noisy, but we could just not accept that. I know my son’s pattern, and this was not him. Something more was going on that the nurse was just not seeing.
As the parent comes to know the trace of his or her child, the expertise of a new nurse or other health professional may be called into question rather than the functioning of the familiar neonatal monitor screen. The parent may see the trace of the child in a way that the professional just does not appreciate. It is the trace of my-child.
The Experience of the Monitor as My-Self as Parent Intertwined With Monitor I have tried to hold his hand by positioning my fingers just so between his fingers so he would grasp mine. He has always been shaking too much from the cooling blanket. He has always been withdrawn. But today was different. I called his name, and he opened his hand, then he held my finger. And it was like “Mom, you are here, you are here for me.” I had very strong feelings. I think he had the same feelings, just like mine. Like you know when you hold something
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van Manen very strongly, the base of your nails turns white. Well, his fingers were white when he held my finger. He was holding my finger so very strongly. He wasn’t holding my hand, he was holding my finger, because he wanted to do that. And then I told him, “You’re going to be okay.”
This mother described moments of naked perception: an embodied parental being-with child as other in a world of bodily perception. Here, the mother encountered her child as an other who was so very much like her—of her, from her—yet visibly and invisibly other than her. In this place, the body is perspectival and perspective emerges out of the very stuff of the world (Merleau-Ponty, 1964/1968). Still, this moment, this way of being together as self and other, may be violently interrupted by the technology: And just then I heard the monitor beeping. At first, I thought it was from another child’s machine. Then, I realized that it was from my David’s machine. It told that something was not normal. I looked away from David to the screen. I was scared. What have I done? Have I loosened a connection? Or dislodged something? I was worried. Maybe his blood pressure is going down? Maybe his breathing has stopped? I turned to the nurse who was there. She just watched the screen. At first she did not say anything, then she said, “Don’t worry, it is okay to touch your baby.”
may become part of the parent’s being-in-the-world. The monitor is not just a bodily extension of the child; it is also a bodily extension of the parent. The monitor is woven into the intersubjectivity of parent as self and child as other—a way of being whereby technology vascularizes the flesh of a common world. As technology weaves into this substancing matrix; self and other are permeated, invigorated, imbued by its essence. In this way, the child and parent are transformed. We may wonder: Whose and what body is this monitor? A few days ago, the nursery was really quiet. A number of the nurses were on break, and the babies were all being so quiet. There was no ringing of monitors, just the airy sound of the breathing machines. It was eerie in its stillness. I just did not feel right. I could not get comfortable in there. I found myself talking out loud to myself, just so I felt normal.
Unable to feel “right” without the technological presence, parents may feel uncomfortable and unfamiliar in a silent world—a world without machine—as their own bodies feel strange.
The Experience of the Monitor as My-Child Transformed
When the monitor alarms, the parent who had begun to simply be-with his or her child, may turn away, to look at the monitor screen. Sometimes, the monitor may merely be in the background. It may signify the felt presence of others—the nurse, the physician, or other health care professional—responsibly watching over the parent and child. The monitor may be-there “for me” as the parent:
I remember the feelings, holding my daughter in those first days. I was in shock. My one-pound baby girl. Just holding her with those monitors. It was a happy moment, but at the same time, I felt like that moment had been taken away from me. You never think about holding your baby full of tubes, covered in cords. Every time the monitor would beep it was like, what is going on? It was very emotional. I could not look at her without looking at the monitors.
We have moments of privacy. Moments of just him and me. When the curtains are closed around us and I hold him against my skin. I feel his warmth, his chest rise and fall, skin to skin. It is wonderful. But, we are never alone. I am never worried. The monitor will alarm if anything is wrong and the nurses will come running.
When babies are born it almost seems natural that they be left naked or swaddled to be maintained in their innocence. Dressing an infant even in clothes is almost unnatural as the baby may be made to appear prematurely like a little adult. Parents may expect to see their baby in their naïve, untouched nakedness. When a child is monitored, the child may be experienced as transformed. Adorned with probes, intravenous lines, and other medical paraphernalia, the child is visibly and invisibly transformed. The parent is no longer holding the newborn child; rather, the newly born is reborn as cyborg. What is a cyborg? A cyborg is more than a blending of human and technology. For example, the utilization of contact lenses or an artificial limb to restore biological capabilities may seem no more cybernetic than a pair of glasses or a cane, especially if the gained functionality is only restorative. Likewise, an infant fitted with a mechanical heart or insulin pump perhaps should not be experientially considered as cyborg if these medical modifications only sustain physiologic function in the context of organ
If we probe deeper we may wonder: Is the monitor truly ever just behind or beside the parent and child? Is it just the body of the child that is monitored? Or does the monitor somehow extend its reach beyond the child to the parent? Sometimes after I leave the nursery and lay at home in my bed I still hear it. I still hear the room. I hear the alarms ringing in my head—the regular, irregular ringing. My house can feel so uncanny and quiet. There is a certain familiarity to that sound after a while. It is hard to leave that room.
The parent, who dwells in the nursery, is embodied in relation to the neonatal monitor. The rhythm of sounds
1002 disease. So, how is it that a noninvasive monitor is capable of invoking cyborgification? When you get used to it, you forget about it. I held her this morning before you came. It took three people to place her on me. The respiratory therapist held her tube, and her nurses took care of the wires and intravenous lines. I just held her then for a couple hours. As the monitor rang for a desaturation, and her breathing paused, I would rub her back. The trace returns to baseline and her breathing steadies. She comes up so well. Without even looking, I hear her come up. I can feel against my chest when she needs a suction. It is a wet, vibratory feeling, then the machine rings tube obstruction until we suction her out. I don’t really look at the monitor more than I look at her face, her body, or any of the other medical instruments. But I constantly know how the monitor reads. I am always listening for the monitor, I am always listening for her.
The calling sounds of child and monitor, and the parent as present, responsive, responsible. Attentive and caring, the parent may sense the child both through the monitor and through his or her bodily being. As the child comes up from desaturation, bodily breathing normalizes and the trace on the screen steadies. Child and monitor respond. This embodied experiencing of my-child may be in both the parent’s experiencing of raw bodily reverberations and the synthetic monitor sounds. And so, the experience of contact is perhaps neither wholly in the physical nor in the virtual; rather, it is in the intertwining of encroaching aspects of reality and a screen-mediated cyber reality. The cyborgian technology may be intricately woven into the embodied intersubjectivity of the sentient (hearing, touching, and looking) and the sensible (being heard, being touched, being seen). Here, the monitor weaves and is woven into the relation of parent and child. It may be difficult to untangle and work out the connecting wires of the monitor. It may be difficult to just see my-child without his or her cyborgian shell: I have been pumping throughout Taylor’s entire NICU stay so I was really excited when the doctors said that I could try and breastfeed Taylor. I have a strong let down so before I even had a chance to put him against my nipple I was already leaking. I tried to get him latched, and every time he seemed to start sucking, the monitor would ring. I don’t know if it was the position, the way I was holding his head, but I just could not do it. I kept looking up at the monitor like, “Yeah, I get it . . . this is not working.” But he did seem to be trying.
The parent may experience the mixed messaging of my-monitor-child. Monitor and child may be given to parental experience as entangled, knotted, crisscrossed. So much so, a mother may be unable to see the sole physical presence of her son successfully nursing from her
Qualitative Health Research 25(7) very body, as embodied perception may be in the blending of trace and child. In this way, the cyborg child emerges. Seeing just my-child, looking away from the monitor, may be experienced as almost impossible.
Concluding Comments The neonatal monitor may affect parental sensibilities, and reshape the way that the child is experientially given to the parent. Seemingly, just like other things, the neonatal monitor may be understood to bear morality because it mediates parental perceptual experiencing from which (moral) decisions may be made (Verbeek, 2000/2005). As the monitor is woven into human relationships, the monitor may carry more ethical significance than other seemingly ordinary things. The monitor penetrates the ethical moment, the ethicity of ethics, as it weaves into the relation of self and other, parent and child. The technological intertwinement of self-technologyother or parent-monitor-child is not necessarily a regretful thing. Medically, the monitor is used because it has a necessary clinical role in monitoring the sick or premature child. Its utility is not in question. Still, in exploring the way that it pervades the experiencing of self and other, the neonatal monitor can hardly be said to be neutral. The monitor may regulate behavior in unrecognized ways. So, although there is a medical need for monitoring technologies, the question remains: How should these technologies be used if they truly are so noninvasive? Perhaps the answer begins with the word “reflectively.” When neonatal monitoring is available, the first question to be asked is, “Should or ought it be used?” And, “Does this particular child really need to be displayed on a screen?” And then, of the monitored child, “Does this child still need to be monitored?” If yes, “Are there at least some times when it may be safe to lay the monitor aside so being-with my-monitor child is solely being-with my-child?” These questions speak to a turning of the parent back to the child as child, rather than child as technologized cyborg child—an engagement with reality (Borgmann, 1999). There are also questions to be asked of the technology itself. In the design of monitors and related paraphernalia, is there a way to make them more sensitive to the developing relation of parent and child? Designers should answer the plea for a morality of machines (Achterhuis, 1998). Medical equipment engineers ought to build an awareness of the ethical relations lived every day through their novel technologies. As such, should the default functioning be a limited display, or perhaps a display that dims, fades away, when vitals are within normal limits? Beyond the display, attention to the development of wireless (or even electrode-less) monitors that may make it that much easier to just hold my-child, or move my-child
van Manen connected yet disconnected away from the neonatal monitor screen is surely needed. Imaginably, the developing parent–child relation should serve as motivation for design innovation. Ultimately, a phenomenology of the parental experience of the neonatal monitor screen perhaps speaks most to the thoughtful, tactful, and often tacit dimensions of clinical practice in understanding the ethical relation of self-technology-other. The physician, nurse, or other health care provider who uses the monitor is not just a technician, but rather a careful, caring professional. As technology becomes more pervasive and perhaps more transparent, it is crucial for practitioners to gain a renewed understanding of how parents experience being-with their children in the medical lifeworld. The neonatal monitor provides but one ordinary example for consideration in the manifolds of machinery in technologized medical health care. Acknowledgments I am very grateful to the parents who generously shared their experiences for this study. I also thank Wendy Austin, Paul Byrne, Catherine Adams, and Po-Yin Cheung for their ongoing guidance and support.
Author’s Note Portions of this article were presented and published in the Proceedings of “McLuhan’s Philosophy of Media”—Centennial Conference/Contact Forum, 26–28 October 2011 (M. A. van Manen, 2012a).
Declaration of Conflicting Interests The author declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding The author disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Canadian Institute for Health Research Doctoral Research Award—Frederick Banting and Charles Best Canada Graduate Scholarships [201110GSD].
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Author Biography Michael A. van Manen, MD, FRCPC(Peds,NICU,CIP), PhD, is a clinician researcher in neonatal-perinatal medicine, Department of Pediatrics, University of Alberta, Edmonton, Alberta, Canada.
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