According to recent approaches in the philosophy of medicine, biomedicine should be replaced or complemented by a humanistic medical model. Two humanistic approaches, narrative medicine and the phenomenology of medicine, have grown particularly popular in recent decades. This paper first suggests that these humanistic criticisms of biomedicine are insufficient. A central problem is that both approaches seem to offer a straw man definition of biomedicine. It then argues that the subsequent definition of humanism found in these approaches is problematically reduced (...) to a compassionate or psychological understanding. My main claims are that humanism cannot be sought in the patient–physician relationship alone and that a broad definition of medicine should help to revisit humanism. With this end in view, I defend what I call an outcomes-oriented approach to humanistic medicine, where humanism is set upon the capacity for a health system to produce good health outcomes. (shrink)

In the past 50 years, an ethical-legal boundary has been drawn between treatment and research. It is based on the reasoning that the two activities pursue different purposes. Treatment is aimed at achieving optimal therapeutic benefits for the individual patient, whereas the goal of scientific research is to increase knowledge, in the public interest. From this viewpoint, the patient’s experience should be clearly distinguished from that of a participant in a clinical trial. On this premise, two parallel and mutually exclusive (...) regimes have been established. Yet in the case of deep brain stimulation (DBS), this presentation is a poor fit, for both the patient’s lived experience and medical practice and research. The frictions may be explained by the specificities of the treatment (including surgery and medical devices) and of the pathologies concerned (chronic and evolutive), and by the characteristics of the medical team implementing the treatment. These particularities challenge the dominant frame of reference in medical bioethics and cause difficulties for the current legal framework in fulfilling its dual role: to protect patients while supporting the development of innovative treatments. The dominant model is still the clinical trial for medication safety and legal requirements of drug market regulation. However, DBS forces us to reflect on a medical device that is permanently implanted in the brain by highly specialized multi-disciplinary neurosurgical teams, for the treatment of chronic evolutive diseases. These devices demand fine-tuning on a case-by-case basis and there is still a lot to discover about why DBS is effective (or not). As a result, the wall between treatment and research is osmotic: many discoveries are made incidentally, in the course of treatment. The following study begins with these observations, and suggests that we review legal provisions (especially in French and United States law) so that they are better adapted to the first-person needs and experience of the patient undergoing brain stimulation. (shrink)

This contribution intends to explore patients’ lived experience, with a focus on the temporal dimension. On the basis of a qualitative study that led me to interview persons with Parkinson’s disease (PD), caregivers, and medical professionals, I develop an empirical and philosophical investigation of the temporalities surrounding the implementation of deep brain stimulation (DBS) in Greece. I raise the issue of access to DBS medical care, and show how distinct temporalities are implied when the patients face such a matter: that (...) of linear time, linked with the medical discourse, the bureaucratic time linked to administrative and financial hurdles in the implementation and maintenance of DBS, and the technological time of the body/technology fusion. I consider initially the impact of technology and health care settings on the lived experience of patients and the enactment of multiple bodies which are interrelated with the social world. I then expand my analysis in order to show that this experience cannot be a solipsistic one, or specific to one physician/patient relationship. It is fully socially shaped. (shrink)

This contribution aims at describing the experiences of Deep Brain Stimulation (DBS) as discussed on Internet forums. Since the 2000s, increasing attention has been paid to health practices associated with the use of the Internet, whether by medical professionals, public authorities or researchers in the social sciences. We know that Internet is used by patients with Parkinson’s disease, in order to discuss about their lived experiences. This contribution will present how these Internet users address the specific theme of DBS. We (...) will examine how their use and the information sharing associated to it participate in the “shaping” of the lived experience of deep cerebral stimulation. This contribution will be introduced by an analysis of the state-of-the-art in sociological and anthropological international research on the topic of “Internet health”. On the basis of this analysis, it will propose a framework to describe and understand the various uses of the web that are made to give an account of the experience of stimulation. The existence of collective mobilizations in Parkinson’s disease, an old Internet experience and media oppositions concerning certain antiparkinsonian drugs, are conditions which push us to question these themes concerning DBS. This paper is a description, for the first time, of roles played by the users of these Internet forums and the different online activities produced about DBS subject. In an ethnographic perspective, we had to imagine that we were an Internet user seeking patient experiences with this surgical procedure to understand these interactions about DBS. The main goal of this contribution is to describe the attention paid by users for medical information about DBS in the identity and self-help process. The interest of such an approach is to open an anthropological reflection on the place and the role of the medical representations in the testimonies of experience of the disease or the treatments. (shrink)

Cet article part du compte rendu ethnographique d’un traitement clinique aux États-Unis pour examiner comment « le patient » est imaginé et réalisé dans le travail médical. L’article avance que le patient n’est ni seulement une position-de-sujet occupée par l’individu qui fait l’expérience de la maladie ou du désordre, ni purement un objet d’intervention médicale, mais plutôt que le patient est une catégorie de pensée, partagée par ceux qui cherchent une guérison et ceux qui l’offrent. De ce point de vue, (...) comprendre la perspective médicale utilisée dans le cadre de la clinique suppose d’inclure la philosophie dans et de la médecine intégrée dans les pratiques thérapeutiques quotidiennes.The paper uses an ethnographic account of clinical treatment in the United States to examine how « the patient » is imagined and realized in medical work. The paper argues that the patient is neither solely a subject-position occupied by the individual experiencing illness or disorder, nor purely an object of medical intervention, but rather the patient is a category of thought, shared between those seeking and those offering healing. In this way, understanding the medical perspective taken up in the clinic would have to incorporate a philosophy in and of medicine embedded in everyday practices of therapeutics. (shrink)