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Misapplying autonomy: why patient wishes cannot settle treatment decisions

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Abstract

The principle of autonomy is widely recognized to be of utmost importance in bioethics; however, we argue that this principle is often misapplied when one fails to distinguish two different contexts in medicine. When a particular patient is offered treatment options, she has the ultimate say in whether to proceed with any of those treatments. However, when deciding whether a particular intervention should be regarded as a form of medical treatment in the first place, it is the medical community who has the ultimate say. Some argue that particular interventions should be allowed by virtue of the fact that they are autonomously requested. But making such an argument fails to distinguish between these two contexts and misapplies the principle of autonomy, ultimately having the potential to instigate problematic changes in the practice of medicine.

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Notes

  1. For a review of appellate court cases on the matter, see [2].

  2. We will use the ‘medical community’ throughout this paper to mean any person or body that plays a role in developing the standards of medical practice (i.e. physicians, the FDA, hospital administrations, etc.).

  3. This is often referred to as “soft law.” For a detailed discussion see [7].

  4. One might raise the dilemma: what if the medical community is divided in its opinion over newly proposed treatments? This problem will inevitably arise in medicine, but it does not negate the fact that the medical community is the most natural arbiter in matters of appropriating medical treatments.

  5. Another issue that might seem to blur the lines between these contexts is that clinical research often occurs in the clinical context (where a patient is offered an experimental intervention), so determining whether an intervention should be a form of treatment appears to partially occur in the clinical context. However, this actually serves to reinforce our claims that the administrative and clinical contexts are distinct because patients participating in research are explicitly informed that the purpose is to generate knowledge and that what they are receiving is not considered a form of treatment.

  6. Though our account is compatible with the goals of medicine being socially constructed, it is incompatible with any account of medicine (socially constructed or not) that defines the goals and scope as purely meeting consumer demands since that would collapse the distinction between the administrative and clinical contexts.

  7. We omit a discussion of the principle of justice because, in the cases we are concerned with, it is not one of the principles in conflict.

  8. For example, Harry Frankfurt’s account of autonomy [13] requires that a person have higher order approval of their first order desires and Jon Crisman’s account [14] requires that an agent approve of how they came to have the desires that they have.

  9. The one caveat being disease that poses serious threat to the public, such as legally-enforced treatment of patients with tuberculosis (see CDC’s guidance on tuberculosis management: https://www.cdc.gov/tb/programs/laws/default.htm). These are rare cases in which the principle of justice overrides autonomy, but they do not represent the standard for the vast majority of cases.

  10. The Health Services, Medicare and Medicaid include protections for physicians unwilling to perform sterilizations and abortions. Forty-five states have right of conscience statutes. See also Article 9 of the European Convention of Human Rights [16]. Of note, there are authors who argue against physician right of conscience [17].

  11. Two notable cases are the Helga Wanglie case [19] and the Baby L case [20]. Of note, while we omit a direct discussion of medical futility, arguments in favor of upholding the concept of medical futility strengthen the central claim of this paper.

  12. This phrase was coined by Leon Kass and refers to the loss of a well-defined purpose to medicine, such that medicine becomes more of a business dictated by consumer requests [22]. We will discuss the import of ‘scalpels for hire’ in the section of this paper entitled “Consequences of misapplying autonomy.”

  13. See Arthur Caplan’s [23] and Robin Henig’s [24] comments.

  14. There is some uncertainty about whether Shuping was actually blinded by her psychologist or whether it was done by someone else. The account is based only on her testimony and the psychologist in question was not identified.

  15. Many other cases of BIID have been reported, the most famous being the two men who received elective amputation of healthy limbs by the Scottish surgeon, Robert Smith [26].

  16. We will collectively refer to maiming healthy body parts as ‘healthy-limb amputation.’

  17. This is Muller’s conclusion [27, pp. 41–42].

  18. Robert Smith brought this topic into public view in the late 1990s when he amputated the healthy limbs of Kevin Wright and Hans Schaub [28].

  19. This is sometimes referred to as “physician-assisted suicide,” “physician-assisted dying,” or “medical aid-in-dying.” Additionally, we are not discussing euthanasia explicitly as it is a more extreme case. However, all our arguments in relation to PAD also apply to euthanasia.

  20. Another popular response can be found in Bonnie Steinbock’s widely anthologized article “The intentional termination of life” where she argues that the relevant issue is that withdrawing life-sustaining treatment does not necessarily involve an intention to end the patient’s life whereas PAD does [36].

  21. It is worth noting that other professions (e.g. law, academia, etc.) function similarly with their own goals and scope, so medicine is not unique in this regard.

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  1. McGovern Medical School, University of Texas Health Science Center at Houston, Houston, TX, USA

    Colin Goodman

  2. Philosophy Department, College of the Sequoias, Visalia, CA, USA

    Timothy Houk

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Goodman, C., Houk, T. Misapplying autonomy: why patient wishes cannot settle treatment decisions. Theor Med Bioeth 43, 289–305 (2022). https://doi.org/10.1007/s11017-022-09593-0

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