Within the evidence-based medicine construct, clinical expertise is acknowledged to be both derived from primary experience and necessary for optimal medical practice. Primary experience in medical practice, however, remains undervalued. Clinicians’ primary experience tends to be dismissed by EBM as unsystematic or anecdotal, a source of bias rather than knowledge, never serving as the “best” evidence to support a clinical decision. The position that clinical expertise is necessary but that primary experience is untrustworthy in clinical decision-making is epistemically incoherent. Here (...) we argue for the value and utility of knowledge gained from primary experience for the practice of medicine. Primary experience provides knowledge necessary to diagnose, treat, and assess response in individual patients. Hierarchies of evidence, when advanced as guides for clinical decisions, mistake the relationship between propositional and experiential knowledge. We argue that primary experience represents a kind of medical knowledge distinct from the propositional knowledge produced by clinical research, both of which are crucial to determining the best diagnosis and course of action for particular patients. (shrink)

Despite strong growth in scientific investigation of the placebo effect, understanding of this phenomenon remains deeply confused. We investigate critically seven common conceptual distinctions that impede clear understanding of the placebo effect: (1) verum/placebo, (2) active/inactive, (3) signal/noise, (4) specific/nonspecific, (5) objective/subjective, (6) disease/illness, and (7) intervention/context. We argue that some of these should be eliminated entirely, whereas others must be used with caution to avoid bias. Clearing away the conceptual underbrush is needed to lay down a path to understanding (...) and harnessing placebo effects in clinical medicine. (shrink)

Seemingly distant practices of molecular biology and indigenous Xhosa healing have commonalities that I would like to bring into conversation in this article. The preclinical trial of an indigenous medicine brings them together in a research consortium. In this instance, both sets of experts are meant to collaborate in preparing a wild bush for it to pass the tests of the randomized clinical trial (RCT) and to potentially become a biopharmaceutical to counter the tuberculosis pandemic. I aim to tease out (...) how the two sets of actors and their respective practices converge and diverge in their healing hopes and ways of managing uncertainty. Ultimately, I am interested in understanding how the preferred process of making medicine “work” by each set of actors relies upon particular ways of knowing and not knowing life, bringing some ontologies into being, letting others wither away. The shared ways of knowing life as a movement of opening at the edges of the RCT are proposed as paths of recognition between one and the other practice. (shrink)

Miles Little is an Australian surgeon, poet, and philosopher whose published work spans diverse topics in surgery, medicine, philosophy, and bioethics. In 1974 he co-authored a survey that included an analysis of interviews conducted with amputees. This was his first foray into qualitative research. Twenty years later he established a research centre at the University of Sydney that initiated a programme of qualitative research in cancer medicine. For twenty years after that, the centre acted as a hub for research that (...) applied qualitative methods from the social sciences to study the experiences of people who endure illness and onerous treatments and to reveal their evaluations of what medicine does to and for them. This essay explains why Little turned to qualitative research instead of pursuing two other research paradigms that were better established in the 1990s, namely, evidence-based medicine and quality-of-life research. It also notes a development in qualitative research methods that Little’s legacy helps to explain, one which can augment the symbolic power of socially marginalized individuals and groups. With reference to a current controversy in surgery, I argue that Little’s survey of amputees models a laudable response to criticism, and in this respect, it is still relevant today. (shrink)

Most mainstream attempts to understand the “placebo effect” invoke expectancy theory, arguing that expecting certain outcomes from a treatment or intervention can manifest those outcomes. Expectancy theory is incompatible with the phenomena of placebo responses, more appropriately named “meaning responses.” The expectancy account utilizes reflexive consciousness to connect a world of conceptual representations to mechanical physiology. An alternative account based upon Merleau-Ponty's motor intentionality argues that the body understands and is capable of responding to meanings without the need for any (...) conceptual or linguistic content. A motor intentional framework of meaning poses dramatic implications for the interpretation of clinical trials and in the clinical practice of medicine. Most strongly, it argues that the empathic physician can facilitate the physiologic effects of treatments through skillful participation and manipulation of the meaning response. (shrink)

Neuronal ceroid lipofuscinoses are a group of lethal inherited neurodegenerative disorders in humans and many animal species. Critical reflections on a range of ethical issues concerning NCL have been instigated by my research on sheep and cattle affected with NCL, the claim that these sheep and cattle are useful models for the disease in humans, and engagement with families and support groups. My reflections on moral status of animals and validity of animal models are outlined in this paper.