Preserve Patient Autonomy; Resist Expanding the Harm Principle to Override Decisions by Competent Patients.

Abstract

In this thoughtful article analyzing a UK court decision upholding a patient’s refusal of dialysis (Pickering et al. 2022), the authors make the provocative but ultimately unpersuasive argument that clinicians should be allowed to rely on the harm-to-self principle as a basis to override a competent patient’s refusal of life-sustaining medical treatment when they disagree with that decision. Although there is an emotional pull to their proposal, and it could ease moral distress for clinicians who feel ethically and professionally conflicted when they can’t use their expertise to save lives they believe are worth saving, the danger principle could easily act as a disguised form of paternalism, carries with it implicit bias, and would be a setback to modern gains made in medicine in promoting patient-centered care. Modern liberal society is built on the principle that people are entitled to individual freedom and liberty; it is based on the belief that people have inherent worth and are in the best position to know what is good for them (Will 2011). Implicit in this framework is that people with decision-making capacity have the right, with limited interference, to make their own decisions even if those decisions could harm them. Modern medicine is likewise founded on respect for and promotion of individual autonomy (Will 2020). However, this is a relatively recent development. For much of its existence, medicine has followed a “doctor knows best” paternalism based on principles of beneficence and nonmaleficence. It was only a little over a century ago that the right of competent adults to consent to medical treatment was legally recognized. Over the ensuing decades, a fundamental shift occurred in medicine to an autonomy-based model (Will 2020). Today, the principles of autonomy and respect for persons stand at the forefront of medicine (Will 2020). It is well established that competent patients can refuse life-sustaining treatment. Further, the shared-decision-making model has become the prototype for enabling informed consent and supporting patient choices. It consists of a collaborative discussion between clinicians and patients in which clinicians share their medical expertise, provide information to patients in understandable language about the risks and benefits of recommended treatments, and encourage patients to participate, ask questions, and share information about their wishes, preferences, and values, with treatment decisions made consistent with those values (Childress and Childress 2020). Pickering et al. (2022) argue for a limited physician carveout of authority from the autonomy-based model. Specifically, they propose that external factors that include the patient’s welfare and potential for harm from refusing treatment should be balanced against internal factors traditionally used to determine a patient’s decision-making ability. Patient wishes will only prevail if they meet a “higher bar” for measuring competence. Although the article’s argument for the harm principle is premised on beneficence and nonmaleficence, it clearly comes at the expense of patient autonomy. At a time when a patient refusing life-sustaining treatment is making what is likely the hardest and most personal decision that they will ever make, this