Abstract

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Nowadays, birth and death are increasingly medicalized. Biomedical technologies intervene at the limits of life, such as contraception, sterilization, termination of pregnancy (TOP), assisted reproductive technologies (ART), palliative care, artificial life support, advance directives and euthanasia. Birth and death are liminal stages, i.e. times of uncertainty and ambiguity, being subject of philosophical, medical, political, ethical and religious debates. Several countries have decriminalized some medical practices concerning the relationship of each person to his/her reproductive body and dying body, withdrawing certain interdictions (e.g. legalising abortion), albeit maintaining some sanctions for failure to comply with the existing legal framework. Despite a less punitive regime, there is a screening process, within the law, by health professionals (doctors, psychologists and social workers) to understand the patients’ underlying reasons to request medical intervention (Memmi, 2003; 2004). Such are the cases of, for instance, the parental project of a stable but sterile couple wishing to turn to ART; foetus malformation or risk of death of a pregnant woman intending to abort; and palliative sedation to relieve suffering at end-of-life. This new screening process, which might be intrusive to privacy, requires the patient to talk either orally or in writing about his state, his relation to his own body (impulses, affections, desires, distress) and consequently with oneself, justifying to the doctor the request for intervention (Memmi, 2003; 2004). It is common practice among health professionals, particularly in public health institutions, to listen to the patient’s subjectivity in order to collect his or her will about a good death, either through legal provisions (informed consent) or through informal procedures voluntarily implemented by services. While in palliative care units there is a concern about making the terminal ill speak, orally, continuously and progressively, in the case of advanced directives, the individual states, in a timely and written manner, how he intends to be treated during his last moments. Currently, there is a redefinition process of a person, in its moral and juridical sense, which nevertheless refers to a paradox: individuals are required to have such skills as reflexivity, self-determination, self-control, cost-benefit analysis based on information, in dramatic situations concerning their survival (palliative care, euthanasia) or the destiny of their reproductive body parts (ART, TOP). This power of control is conferred by the State to health professionals in order to enforce the law. However, during consultations, experts may subjectively interpret the legally prescribed, creating tensions and ethical and moral conflicts between parties, such as the discomfort felt by health professionals towards certain patients versus complaints of ill-treatment and institutional violence by patients and their families (Bataille and Virole, 2013). In addition to the legal prohibitions of specific practices, health professionals have their preferences and doubts in decision-making, based on ethical values and moral representations translated into professional standards, which may differ from personal beliefs and choices of their patients. For example, doctors might refuse ART to a couple with advanced age or interrupt curative treatment in a terminally ill patient, and refer him or her for palliative care. Moreover, not all people have the same capacity of reflexivity, rationalisation and self-control of their “bodily self”, generating communicational troubles, difficulties in understanding what is transmitted or resistances in accepting medical decisions. Deep emotional states also disrupt the dialogue between specialists and lay people. The session welcomes paper proposals that engage these issues based on empirical studies and/or theoretical analysis.
 

Session organizer(s)
 

Catarina Delaunay (PT) – Integrated Researcher of CICS.NOVA – Interdisciplinary Centre of Social Sciences. MA on gender divisions of household finance and consumption within the couple (awarded the Woman Research Prize 2001 Carolina Michaëlis de Vasconcelos). PhD on time management among emergency physicians. Postdoc on the controversies on assisted reproductive technologies with third-party donor. Both projects financed by the Foundation for Science and Technology. Recent publications: “The beginning of human life at the laboratory: The challenges of a technological future for human reproduction”, Technology in Society (2014); “Dialectical tensions between caregivers and patients in ART and Palliative Care: Ethical and moral issues raised by the (bio)medicalization of birth and death” (in co-authorship with Alexandre Cotovio Martins), in The Making of the Common in Social Relations, Cambridge Scholars Publishing (2015). Research interests: Sociology of Health and Medicine, Sociology of Science and Technology, Pragmatic Sociology.

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