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It’s Not Just a Wound…
As a clinical ethicist, when I visit a clinic or hospital unit for the first time, physicians, nurses, or therapists often say to me, “Nothing ethical is going on here right now. Maybe you can come back another time.”
This response is not unreasonable, given that a large proportion of ethics teaching and publishing, as well as public debate, has focused on crises (eg, the brain death of a 30-week gravid woman), innovation (eg, implantable computer chips), and complexity (eg, organ transplantation). Sustained analyses and discussions about ethical challenges and opportunities in everyday treatment and care are overdue. Analysis of wound care by individuals in the field of ethics has been missing. To help change this situation, five clinical cases involving wound care are examined and the following is provided: 1) a description of the case, 2) identification and application of relevant ethical and legal concepts, and 3) an explanation of the implications for wound care practice.
To initially step outside the general clinical setting to consider wounds is illuminating. In researching this article, discovering different contexts in which wounds have been judged important is telling. St. Francis of Assisi is the first person acknowledged to have wounds known as stigmata like those of the crucified Christ. Since then, many stories and theological debates have occurred regarding individuals claiming similar wounds. In a very different venue, Rowling’s fictional character, Harry Potter, sustained a forehead wound in a battle with the evil wizard Voldemort.1 Frank’s2 book, The Wounded Storyteller, is a sociological and philosophical examination of illness experiences familiar to more academic circles. Frank holds that wounds are indicative of suffering — existential and psychological as well as physical. Finally, as shown in ordinary conversation, something more than physiology is at issue when something is described as a wound rather than as a cut. These disparate examples resulted in the theme for this paper: it’s not just a wound. The following case studies help illustrate this theme (Note: all names are fictional).
Case Studies
Case 1. Mr. V was admitted to the ICU for severe respiratory distress, hypertension, and symptoms of morbid obesity. At 62 years of age, his heart was enlarged and he had diabetes and chronic obstructive pulmonary disease for years. Skin breakdown at the base of his spine occurred several days post-admission, despite regular turning. Because of illness and strong analgesics, Mr. V was rarely awake so his family participated in discussions about treatment options. Fours weeks passed. Although the hypertension and respiratory distress improved due to pharmaceutical and dialysis therapy, he remained very ill. Skin breakdown continued: 350 square inches of his back to the depth of his spine were lost due to necrosis and surgical debridement. The care team explained to the family that the wound had worsened, his heart continued to struggle, and dialysis may be needed permanently. Because “he has always been a fighter,” the family wanted aggressive treatment to continue and would not entertain conversations about non-resuscitation in the event of an arrest.
A practitioner is ethically and legally obligated to honor patients’ acceptance or refusal of treatment when they are competent, informed, and free from coercion. “Treatment” is not limited to acute or intensive therapies such as surgery, psychotherapy, pharmaceuticals, and dialysis.3 Any diagnostic test, intervention, or mode of assistance provided by a healthcare practitioner qualifies as treatment for the purposes of consent as in the case of blood pressure cuff use, an ultrasound test, a dressing change, pulmonary suctioning, or occupational rehabilitation.
If a patient is incompetent, the objective of surrogate decision-making is to try to make choices similar to what the patient would make if able. It should not be assumed that a spouse, adult child, or guardian knows enough to make such choices. Instead, practitioners should work collaboratively with these individuals to determine to the best of their ability what the patient would likely choose. In this way, a spouse, adult child, or guardian appropriately serves as the patient’s voice, but not the decision-maker. Instead, the patient’s own values, upbringing, responsibilities, and history of making bearable compromises should guide the decisions.
With respect to Mr. V’s family, their “informed-ness” was questionable. Mr. V’s team described the initial skin breakdown as a “wound” and continued to use that word, only adding caveats such as “It’s getting worse” or “It’ll be hard to heal.” But the lay public does not understand how much a body can break down because medical technology can compensate for so much so easily. Skilled nurses kept Mr. V’s bedding clean and odorless just as pain management kept him from appearing to feel pain or discomfort. In a sense, medicine’s knowledge and skills masked the experiential reality of his body.
The implication for clinical practice is that practitioners must not forget that the public usually associates the word wound with non-serious conditions. Yet as Cavicchioli4 notes, wound recovery can be predictive of general morbidity and mortality outcomes. Mr. V’s family may have deemed concern about the wound paltry when compared to his “bad heart and kidneys.” How could a clinician educate them intelligibly and compassionately? Displaying his back or photographs likely would cause too much psychological distress. Instead, language matters. Rather than continued use of “wound,” the team should shift to talking about “the unrelenting death and loss of back muscle and tissue” — that this loss in itself is a lethal condition necessitating life support and that meaningful recovery is no longer reasonably possible. At some point in the first week or two after admission, the state of Mr. V’s back was no longer just a wound.
Case 2. The team at the wound care clinic was frustrated by Ms. G’s lack of vascular improvement. When she arrived for another check-up to see if her swollen leg and recent ulcer had abated, the examining nurse discovered the patient was not wearing a pressure bandage and the dressing was completely dry. Discouraged, the nurse remarked, “It’s going to be impossible to get better if you don’t comply with the treatment plan. We really have to get you to use the bandages and to keep the dressing moist.”
Although the human body is a physiological marvel, it is also a site of intimacy. A person’s body is highly personal and individuated. Our society recognizes a person’s authority to stipulate who or what has access to and contact with his or her body. Moreover, privacy comes in degrees — a woman may choose to wear a sleeveless blouse but this does not mean that someone can touch her arm.
With regard to Ms. G, bandages and dressing may have reduced her sense of attractiveness; thus, compromising physical intimacy and sexuality, irrespective of her age. Moreover, they publicize that she is ill. She also may have difficulty coping with the wound’s odor and exudate (the term exudate is strictly technical and is not readily associated with words reflective of everyday experience such as pain, watery ooze, or pus). A dry dressing may seem less offensive to her.5-7 Leder8 suggests a common sense definition for health: a person is healthy when she can ignore her body. More simply, she is healthy when her body is working as it should for her and her attention can be directed elsewhere. Accordingly, when parts normally out-of-view (ie, are inside the body) become visible (eg, bone, blood, muscle, or tendons), patients can become alarmed. Ms. G may have been unaccustomed to and uncomfortable with dealing with significant exudate and being able to “see into” the wound.
When a practitioner discusses wound care therapy with Ms. G, he should talk about more than just healing time and sterility. He should add other important criteria for evaluating available options: the importance of personal intimacy as well as possible difficulty dealing with bodily secretions and seeing internal body matter or parts. By proactively identifying a plurality of criteria, the practitioner demonstrates his understanding that, from the person’s perspective, it is not just a wound.
Discussions about compliance imply judgments, threats, rigidity, and unilateral-ness (ie, discussions are always about patient, not practitioner or facility, compliance). This undermines relationships that are supposed to focus on personalized help, compassion, mutuality, and trust. A practitioner and patient should assess each treatment option in terms of its shared sustainability. In other words, will the patient be able to incorporate the therapy into her daily routine with her daily responsibilities? Can the practitioner arrange treatments and follow-up on which the patient can rely? This approach prevents the relationship from becoming a “battle of wills” where the practitioner demands that the patient strive for maximum outcomes while the patient demands attention be paid not just to her body, but also to the life she lives.
Case 3. Ms. A was in the midst of a 6-month outpatient psychotherapy program. Three months earlier, she attempted suicide in response to the SIDS death of her 8-month-old daughter. In the beginning, she often missed appointments with her psychotherapist. Eventually, however, she could talk about the day Cassie died and no longer blame herself or her partner for her death. But even though it was July, Ms. A continued to wear long-sleeved blouses to hide the healing wounds on her wrists. Her psychotherapist asked her to wear short-sleeved tops for the counseling sessions to no avail.
Wounds can involve stigma which Goffman9 defines as “an attribute that is deeply discrediting… We construct a stigma-theory, an ideology to explain [the person’s] inferiority and account for the danger he represents.” The person’s social identity is tainted — she is now an outlier and unworthy of others’ trust. As Coull10 notes, a person may experience “social death” — that is, the person is no longer part of various relationships and groups.2 Recognizing the likelihood of this kind of death, the person may focus on “passing” when in the company of other people, maintaining a façade of normalcy by behaving in ways consonant with others’ expectations of her former self.
The deceptive efforts needed to “pass” successfully may be more exhausting and confusing than the efforts needed to re-educate others. A practitioner serves a patient well when he addresses the possible social interpretation of wounds that are the result of certain events or actions. He can ask a non-directive question such as, “Will other people in your life ask you about your wounds? Do you feel prepared to answer such questions?” This gives the patient permission to talk about others’ judgments and the potential for a negative change in her status. Because wounds can be interpreted as reflections of character, thereby impacting social relations, their significance exceeds their physiology.
Case 4. Ms. N, a licensed pipefitter, sustained burns to 60% of her body and her face when the industrial steam pipe she was working on burst. The burn team tended to her wounds daily. As she became more talkative, she stated she did not want to go on. The team wondered whether to respect her refusal of continued, life-sustaining treatments.
The immediate issue involves the doctrine of informed consent. However, in the wake of such a catastrophe, focusing on carefully explaining treatment and non-treatment options misses the mark. Commensurate with the magnitude of change in her body is the magnitude of change to Ms. N’s life and identity. Ms. N has lost many of her former reference points in terms of what matters, what makes sense, and what is possible. If she were to return to living a meaningful life, she somehow has to move beyond this state of chaos.2 Accordingly, wound care should be augmented not just by psychological counseling for trauma and grief, but also by counseling for living and related skills.11
The metaphors of the mutilated body and the screaming body help illuminate Ms. N’s new circumstances. Hers is now a body that typified the carnage of war — a body that seems to have been violently and viciously turned inside out: dried blood, twisted tissue, stumps of bones. Because the cause was accidental, no honor is readily apparent to temper the loss. Moreover this is a body that demands a response from others; it silently, yet unrelentingly, called out “Help me!” to whomever sees it.
The concept of embodiment counters the longstanding Western emphasis on rationality as definitive of human nature. Embodiment implies that a person is an embodied self.12-14 This means that each person is substantively, though not totally, defined by his body and his identity is inescapably tied to it. If a man is tall and poorly coordinated but his best friend is of average height and very coordinated, the world will be made up of highly dissimilar challenges and opportunities for them. Furthermore, embodiment holds that when the body is cared for, so is the person. Campbell15 draws this point even more strongly: “The body cannot be violated without the self being wronged.”
In response to the mutilated body metaphor, the expectation is that everyone will have difficulty facing such grisly devastation, including those responsible for tending to the wounds. Psychological assistance should be part of the patient’s therapy plan to enable her to look at her own body.2 Assistance also should be provided to her loved ones so they can move past their visceral responses of looking away or reluctance to touch. Coull10 found that a burn victim fares much better if those who support her are included in the recovery plan. In addition, routine counseling should be provided to the treatment team so they can continue the daily, up-close work of wound care.
Goffman’s16 work on social presentation is in accord with the screaming body metaphor. He argues that two kinds of expressiveness exist: “the expression [one] gives and the expression [one] gives off.” When coming into the presence of others, each party must confirm the type of situation and, by his actions, attempt to control it. For example, once it is confirmed by the parties that this is a job interview, each will have expectations of his own and each other’s subsequent behavior. If the situation is unclear, they will not know what is and is not appropriate behavior.
Family members will not know how to respond to the unceasing scream of the severely burned victim; the “script” is unknown to them. They do not know their lines, yet they must respond. Consequently, practitioners should proactively discuss with family members how they can interact with the patient in ways that are in accord with their past relationships. In other words, it might be interpreted as hypocritical if a formerly estranged family member suddenly maintains a daily vigil (ie, “Where were you when you could really help me?”). People can readily determine which actions are insincere or conveniently short-lived. Practitioners should support family members in maintaining the integrity of their past relationships with the patient. The metaphors of mutilation and screaming underscore that Ms. N’s burns are not just wounds.
Case 5. Mr. S’s injuries from a motor vehicle accident included a compound fracture of one leg, a dislocated knee of the other leg, a broken jaw, lacerations of the spleen, pneumothorax, massive blood loss, and a great deal of tissue swelling. Once his recovery changed from critical to stable, progressive rehabilitation became the focus for several months. The surgical resident quickly examined the fracture wound that finally had closed and said, “The wound has closed nicely. In time, you can have laser treatment to make the scar less noticeable.” Mr. S, 28, replied, “But… I don’t know. I kind of like the scar. Weird, huh?”
The word scar has an interesting etymology. Eschara is a Greek word meaning hearth which, in ancient times, was used to burn offerings to ward off evil spirits. The hearth represented an opening into the home from the outside world — a point of vulnerability. Protective ceremonial offerings were, therefore, requisite. A scar represents the body’s past vulnerability. As Macary17 points out, a scar is part of the body’s permanent memory — a testament to some harmful or dangerous event.
The significance of a scar is personal. It may elicit pride because the bearer did not flinch from danger, was resourceful in surviving, withstood associated burdens, or perhaps sacrificed self-interests for others’ interests. In some cultures, deliberate scarring of the face or body marks passage from one important stage of life to another, such as from childhood to adulthood or single to married status. For other people, a scar may cause anxiety or sadness because of the losses sustained. Or a scar may prompt anger as the bearer recalls a betrayal or an injustice sustained. The resident’s focus was aesthetics by the scar’s meaning may be more extensive.
The notion of authenticity, whether developed by Sartre18 or Heidegger,19 holds that a person should conscientiously strive to plan, choose, and live in ways that are coherent and reflective of individual uniqueness. Success occurs when each person can “own” a choice or action, even though it may have been short-sighted, poorly planned, or less than optimal. Ownership is desirable because it represents honesty, self-reflection, and accountability.
A practitioner should not presume that every person wants a scar removed or minimized. It may have personal significance worth keeping. A practitioner can be nondirective when discussing scar removal by explaining that different people have different opinions about a scar: some want it removed, others want to keep it as it is, and others do not care either way. In other words, the individual person determines what his scar does or does not mean.
Conclusion
Wound care embraces various legal concepts: informed consent, surrogate decision-making, competency, and privacy. Ethical concepts include experiential reality, intimacy, compliance, embodiment, stigma, bodily memory, and meaning. These concepts affirm that much is at stake in wound care. The above cases illustrate that wounds can matter in deeply personal ways. Fortunately, practitioners can help transform what initially may seem ethically benign or problematic into an ethical opportunity. A practitioner should encourage a person to explain the individual significance of his wound over and above the obvious issues of healing and pain. Although the physiological issues will be obvious to a practitioner, the kinds of issues identified above may be more immediate and pressing to patients. For them, it’s not just a wound.
