The term body integrity identity disorder (BIID) describes the extremely rare phenomenon of persons who desire the amputation of one or more healthy limbs or who desire a paralysis. Some of these persons mutilate themselves; others ask surgeons for an amputation or for the transection of their spinal cord. Psychologists and physicians explain this phenomenon in quite different ways; but a successful psychotherapeutic or pharmaceutical therapy is not known. Lobbies of persons suffering from BIID explain the desire for amputation in (...) analogy to the desire of transsexuals for surgical sex reassignment. Medical ethicists discuss the controversy about elective amputations of healthy limbs: on the one hand the principle of autonomy is used to deduce the right for body modifications; on the other hand the autonomy of BIID patients is doubted. Neurological results suggest that BIID is a brain disorder producing a disruption of the body image, for which parallels for stroke patients are known. If BIID were a neuropsychological disturbance, which includes missing insight into the illness and a specific lack of autonomy, then amputations would be contraindicated and must be evaluated as bodily injuries of mentally disordered patients. Instead of only curing the symptom, a causal therapy should be developed to integrate the alien limb into the body image. (shrink)

Phenomenology provides a method for disability theorists to describe embodied subjectivity lacking within the social model of disability. Within the literature on body integrity identity disorder, dominant narratives of disability are influential, individual bodies are considered in isolation, and experiences of disabled people are omitted. Research on BIID tends to incorporate an individualist ontology. In this article, I argue that Merleau-Ponty's conceptualization of “being in the world,” which recognizes subjectivity as embodied and intersubjective, provides a better starting point for research (...) describing the experiences of those with BIID and amputees. (shrink)

In this article, we present an analysis of bodily integrity in hand transplants from a phenomenological narrative perspective, while drawing on two contrasting case stories. We consider bodily integrity as the subjective bodily experience of wholeness which, instead of referring to actual bodily intactness, involves a positive identification with one’s physical body. Bodily mutilations, such as the loss of a hand, may severely affect one’s bodily integrity. A possible restoration of one’s experience of wholeness requires a process of re-identification. Medical (...) interventions, such as a hand transplant, may improve the possibility of a successful re-identification. However, since the experience of wholeness does not refer simply to physical intactness or impairment, the choice for medical intervention should not be based merely upon the degree of physical mutilation. It should also be based upon the degree to which a person fails in re-identifying with his or her mutilated body. We argue that a normalizing operation is only ethically justifiable if the intervention enables the person to be the body he or she has. (shrink)

Physicians are expected to engage patients as partners in identifying the possible benefits and harms associated with treatment options and selecting from among medically appropriate treatment options, rather than simply dictating what treatments patients will and will not receive. This collaborative model reflects the recognition that citizens in multicultural societies have diverse values and are likely to have different views about whether the possible benefits of a medical intervention outweigh the possible harms. However, there are circumstances in which the collaborative (...) process breaks down due to irresolvable disagreement. Especially challenging are cases in which patients are expected to die if they do not receive a treatment and either the patients or their surrogates insist on the treatment despite the physician's belief that providing it is ill advised. The source of disagreement is often differing appraisals of the risks and potential benefits. In such cases, physicians generally judge that there is insufficient likelihood or magnitude of benefit to justify the burdens or expense of treatment, while patients or surrogates believe that the small chance of preventing the patient's death is sufficient to justify the costs and potential burdens to the patient.There is a perception that surgeons enjoy considerable discretion in deciding when the risks of a procedure outweigh the expected benefits. An important contrast can be drawn between surgeons and intensivists—physicians who specialize in the medical management of critically ill patients. We will argue that there are good reasons for subjecting the decisions of both surgeons and intensivists to some oversight. We begin by showing that, for many cases, major professional society guidelines for intensivists recommend oversight via a procedural mechanism rather than unilateral decision‐making by individual clinicians. Next, we present reasons for adopting a procedural approach to dispute resolution, and we argue that these reasons apply to situations in which intensivists believe that patients or surrogates are requesting inappropriate life support as well as to many disagreements between surgeons and surrogates. Finally, we present and respond to several objections. (shrink)

Evaluation of quality of life, psychic and bodily well-being is becoming increasingly important in oncology aftercare. This type of assessment is mainly carried out by medical psychologists. In this paper I will seek to show that body experience valuation has, besides its psychological usefulness, a normative and practical dimension. Body experience evaluation aims at establishing the way a person experiences and appreciates his or her physical appearance, intactness and competence. This valuation constitutes one’s ‘body image’. While, first, interpreting the meaning (...) of body image and, second, indicating the limitations of current psychological body image assessment, I argue that the normative aspect of body image is related to the experience of bodily wholeness or bodily integrity. Since this experience is contextualized by a person’s life story, evaluation should also focus on narrative aspects. I finally suggest that the interpretation of body experience is not only valuable to assess a person’s quality of life after treatment, but that it can also be useful in counseling prior to interventions, since it can support patients in making decisions about interventions that will change their bodies. To apply this type of evaluation to oncology practice, a rich and tailored vocabulary of body experiences has to be developed. (shrink)

In this paper, I explore the meaning of bodily integrity in disfiguring breast cancer. Bodily integrity is a normative principle precisely because it does not simply refer to actual physical or functional intactness. It rather indicates what should be regarded and respected as inviolable in vulnerable and damageable bodies. I will argue that this normative inviolability or wholeness can be based upon a person's embodied experience of wholeness. This phenomenological stance differs from the liberal view that identifies respect for integrity (...) with respect for autonomy (resulting in an invalidation of bodily integrity's proper normative meaning), as well as from the view that bodily integrity is based upon ideologies of wholeness (which runs the risk of being disadvantageous to women). I propose that bodily integrity involves a process of identification between the experience of one's body as “Leib” and the experience of one's body as “Körper.” If identification fails or is not possible, one's integrity is threatened. This idea of bodily integrity can support breast cancer patients and survivors in making decisions about possible corrective interventions. To implement this idea in oncology care, empirical-phenomenological research needs to establish how breast cancer patients express their embodied self-experiences. (shrink)

Body integrity identity disorder (BIID), formerly also known as apotemnophilia, is characterized by a desire for amputation of a healthy limb and is claimed to straddle or to even blur the boundary between psychiatry and neurology. The neurological line of approach, however, is a recent one, and is accompanied or preceded by psychodynamical, behavioural, philosophical, and psychiatric approaches and hypotheses. Next to its confusing history in which the disorder itself has no fixed identity and could not be classified under a (...) specific discipline, its sexual component has been an issue of unclarity and controversy, and its assessment a criterion for distinguishing BIID from apotemnophilia, a paraphilia. Scholars referring to the lived body—a phenomenon primarily discussed in the phenomenological tradition in philosophy—seem willing to exclude the sexual component as inessential, whereas other authors notice important similarities with gender identity disorder or transsexualism, and thus precisely focus attention on the sexual component. This contribution outlines the history of BIID highlighting the vicissitudes of its sexual component, and questions the justification for distinguishing BIID from apotemnophilia and thus for omitting the sexual component as essential. Second, we explain a hardly discussed concept from Maurice Merleau-Ponty’s Phenomenology of Perception (1945a), the sexual schema, and investigate how the sexual schema could function in interaction with the body image in an interpretation of BIID which starts from the lived body while giving the sexual component its due. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:“An Equivocal Couple Overwhelmed by Life”A Phenomenological Analysis of PregnancySara HeinämaaTwo conceptions of human generativity prevail in contemporary feminist philosophy. First, several contributors argue that the experience of pregnancy, when analyzed by phenomenological tools, undermines several distinctions that are central to Western philosophy, most importantly the subject-object distinction and the self-other and own-alien distinctions. This line of argument was already outlined by Iris Marion Young in her influential essay (...) “Pregnant Embodiment: Subjectivity and Alienation” (1984). The other dominant argument is related to the first one, and it states that organic birth is the event that establishes the first experiential separation between the self and the other. On this understanding, the mother-fetus relation would not involve any relations between two corporeal selves; all such relations would be postnatal. This notion has been defended, for example, by Christine Schües (1997; 2000) and Johanna Oksala (2003).1On the other hand, classical phenomenology is dominated by the idea that the rigorous first-person methodology that is essential to phenomenology dictates that the sense of birth must be studied primarily by reflection on the structures of our own recollection or memory. Consequently, the primary sense of human birth would be that of an unattainable limit. This is argued on the basis of the existential fact that we all are born but cannot recall our own birth, or else on the basis of the transcendental fact that the structure [End Page 31] of retention ties each living present to an earlier one and implies that the transcendental ego cannot be subject to generation.2 From this perspective, all analyses and reflections of the experiences of labor, gestation, and pregnancy would be secondary since the sense of birth that these experiences involve is the nativity of another human being and not the nativity of the reflecting self.This paper challenges both the feminist and the classical phenomenological approach. I maintain that careful phenomenological analyses of the experience of pregnancy undermine both notions. Such analyses show, on the one hand, that pregnancy does not imply a nondistinction or self-other fusion but on the contrary involves a specific self-other divide. At the same time, they demonstrate that the sense of birth is more complex than the classical recollection-paradigm suggests and that it includes more components than the signification of an unattainable limit. A proper phenomenology of birth must take into account not only the universal fact that we all are born, but also the equally universal fact that each of us is born from another human being, that is, some other human subject.3 This other human being who “gave” us birth or “from whose flesh we were born” provides us with a unique perspective on our own past, beyond the limits of our own recollection. Her perspective is incomparable to any other external perspective; rather than simply giving us an additional third-person viewpoint on our own organic birth, this one person is able to open a second-person perspective on our pre- and postnatal life and the transition between them—all of which is beyond our own recollection.My argument proceeds by the following steps:First, I develop a fresh discourse on the experience of pregnancy, by studying a set of remarks to be found in Julia Kristeva’s postphenomenological discourse on maternity, on the one hand, and in Simone de Beauvoir’s existential-phenomenological discourse on feminine embodiment, on the other hand. I use these remarks as leading clues for a novel phenomenological study of the experience of pregnancy.4 Contra Young’s influential account mentioned above, I argue that gestation, as experienced by women who live it in the first person, includes a separation between two sensory-motor beings in a nesting relation: the pregnant self and the embryonic other. The alternative account that I provide hinges on my analysis of the experience of fetal movements and the role of touch-sensations and kinesthetic sensations in such experiences. Ultimately, I argue that pregnancy does not erode the self-other boundary or the own-alien boundary but reestablishes both divisions.Second, I compare my account of the experience of pregnancy to Merleau... (shrink)

Gender dysphoria (GD) is marked by an incongruence between a person’s biological sex at birth, and their felt gender (or gender identity). There is continuing debate regarding the benefits and drawbacks of physiological treatment of GD in children, a pathway, beginning with endocrine treatment to suppress puberty. Currently, the main alternative to physiological treatment consists of the so-called “wait-and-see” approach, which often includes counseling or other psychotherapeutic treatment. In this paper, we argue in favor of a “third pathway” for the (...) diagnosis and treatment of GD in youths. To make our case, we draw on a recent development in bioethics: the phenomenological approach. Scholars such as Slatman and Svenaeus have argued that the extent to which the body can (or should be) manipulated or reconstructed through medical intervention is not only determined by consideration of ethical frameworks and social and legal norms. Rather, we must also take account of patients’ personal experience of their body, the personal and social values associated with it, and their understanding of its situation in their life: their narrative identities. We apply this phenomenological approach to medicine and nursing to the diagnosis and treatment of GD in youth. In particular, we discuss Zahavi and Martiny’s conception of the phenomenological interview, in order to show that narrative techniques can assist in the process of gender identification and in the treatment of youth presenting with GD. We focus on two case studies that highlight the relevance of a narrative-based interview in relations between patients, HCPs, and family, to expose the influence of social ideologies on how young people presenting with GD experience their bodies and gender. (shrink)

Respect for autonomy and beneficence are frequently regarded as the two essential principles of medical ethics, and the potential for these two principles to come into conflict is often emphasised as a fundamental problem. On the one hand, we have the value of beneficence, the driving force of medicine, which demands that medical professionals act to protect or promote the wellbeing of patients or research subjects. On the other, we have a principle of respect for autonomy, which demands that we (...) respect the self-regarding decisions of individuals. As well as routinely coming into opposition with the demands of beneficence in medicine, the principle of respect for autonomy in medical ethics is often seen as providing protection against beneficial coercion (i.e. paternalism) in medicine. However, these two values are not as straightforwardly opposed as they may appear on the surface. In fact, the way that we understand autonomy can lead us to implicitly sanction a great deal of paternalistic action, or can smuggle in paternalistic elements under the guise of respect for autonomy. -/- This paper is dedicated to outlining three ways in which the principle of respect for autonomy, depending on how we understand the concept of autonomy, can sanction or smuggle in paternalistic elements. As the specific relationship between respect for autonomy and beneficence will depend on how we conceive of autonomy, I begin by outlining two dominant conceptions of autonomy, both of which have great influence in medical ethics. I then turn to the three ways in which how we understand or employ autonomy can increase or support paternalism: firstly, when we equate respect for autonomy with respect for persons; secondly, when our judgements about what qualifies as an autonomous action contain intersubjective elements; and thirdly, when we expect autonomy to play an instrumental role, that is, when we expect people, when they are acting autonomously, to act in a way that promotes or protects their own wellbeing. I then provide a proposal for how we might work to avoid this. I will suggest that it may be impossible to fully separate paternalistic elements out from judgements about autonomy. Instead, we are better off looking at why we are motivated to use judgements about autonomy as a means of restricting the actions of patients or research subjects. I will argue that this is a result of discomfort about speaking directly about our beneficent motivations in medical ethics. Perhaps we can reduce the incentive to smuggle in these beneficent motivations under the guise of autonomy by talking directly about beneficent motivations in medicine. This will also force us to recognise paternalistic motivations in medicine when they appear, and to justify paternalism where it occurs. (shrink)