Choice is not the issue. The misrepresentation of healthcare in bioethical discourse

Abstract

The principle of respect for autonomy has shaped much of the bioethics' discourse over the last 50 years, and is now most commonly used in the meaning of respecting autonomous choice. This is probably related to the influential concept of informed consent, which originated in research ethics and was soon also applied to the field of clinical medicine. But while available choices in medical research are well defined, this is rarely the case in healthcare. Consideration of ordinary medical practice reveals that the focus on patient choice does not properly grasp the moral aspects involved in healthcare. Medical decisions are often portrayed as if doctors and patients in confidence confront specific decisions about examinations or treatment, yet the reality often involves many different participants, with decisions being made over time and space. Indeed, most of the decisions are never even presented to patients, as it would be unethical to suggest something that is not medically justifiable. The options patients do confront are somewhat arbitrarily constructed within the narrow framework of both what is deemed to be medically appropriate and how the healthcare system is organised practically. While the autonomy discourse has proven valuable, a failure to distinguish between the fields of medical research and clinical medicine has generated a focus on patient choice that does not reflect what is really at stake in healthcare settings. This is alarming, because the current discourse misrepresents medical practice in a way that actually contributes to bioethical self-delusion.

Delivering patient choice in clinical practice: a conversation analytic study of communication practices used in neurology clinics to involve patients in decision-making

“…26 However, it has also been observed that too many options can leave consumers feeling anxious and overwhelmed, 27 with patients at particular risk owing to the nature of clinical decision-making: as a health-care consumer, the patient is, by definition, sick, dependent on the professional for treatment and often lacking the knowledge to make an independent decision and the time to deliberate. 28 Moreover, it is well documented that not all patients want to choose their treatment; 29,30 and, as Pilnick and Dingwall 31 highlight, reviews of the literature on patient centeredness show mixed results with respect to positive health outcomes (although they suggest increased rates of patient satisfaction). We did not start, then, from the assumption that choice ought to be more widely offered to patients.…”

“…Where no treatment choice is constructed for the patient, this is premised on -and justified with respect to -the diagnostic decisions made by the neurologist. As Agledahl et al 28 argue, to avoid making such decisions would often be unethical (e.g. if an available option has no medical justification for a particular patient) or impractical (e.g.…”

“…On the one hand, she does not do what is asked of her: announce a preference with respect to what they do about her turns. On the other, she does clarify further what matters to her in this decision-making process: avoiding a fall (lines [27][28][29][30][31][32]. This sets in motion two additional history-taking questions (lines 33, 34 and 40-44), the responses to which lead to advice-giving by the neurologist at lines 54-60.…”

“…Having received a relatively 'no problem' type of response, the neurologist delivers information about treatment (Extract 29b, lines [25][26][27][28][29][30][31][32][33]. This turn is designed in a way that avoids being hearable as a straightforward recommendation.…”

Care and communication between health professionals and patients affected by severe or chronic illness in community care settings: a qualitative study of care at the end of life

“…'Choices' are framed by professional knowledge and the availability of restricted options. 48,187 Some people are unaccustomed to making plans, and not disposed to choose, especially when faced with decisions about matters of great significance of which they have no prior knowledge or experience. Indeed, the obligation to choose may be experienced as burdensome.…”