Patient autonomy is a fundamental principle in healthcare and medical ethics. Patients have the right to be informed about what it means to undergo a proposed treatment (as well as what it means to refrain from it) and then say yes or no to the treatment. They also have the right to decide for themselves whether they want to be informed about, for example, the risk of future illness.
There is broad agreement on patient autonomy as an ideal, but what does it look like in practice? Are we living up to the ideal? In an article in JME Practical Bioethics, Joar Björk and Anna Hirsch argue that there is a troubling gap between the ideal and its realization in healthcare. The healthcare professionals who have the main responsibility for upholding the ideal often lack both the time and the competence to truly take patients’ autonomy seriously.
Realizing the ideal requires genuine conversations with patients about their preferences for health and care in general and in the current medical situation in particular. Patients are often unclear about what they prefer, so preferences must be given the opportunity to form during the conversation. Conducting such open, exploratory conversations requires both patience and skill. Patients may also be in a condition that prevents them from giving consent, and then relatives must be asked what they can be expected to want. This detective work is not easy, as relatives may be unsure of the patient’s preferences and may have conflicting views. Again, time and skills are required. Another challenge is assessing patients’ decision-making capacity and, if necessary, supporting this capacity. This too takes time and requires expertise.
If healthcare professionals often lack both the time and expertise to take patient autonomy seriously enough in practice, what can we do to better realize the ideal? Joar Björk and Anna Hirsch argue for a new professional role in healthcare: autonomy consultants. They could perform the specific tasks that the realization of the ideal requires. In addition to the tasks indicated above, autonomy consultants could, for example, advise patients on their rights. They could also conduct conversations with patients about how and to what extent they want to be involved in decision-making, or help them draw up so-called living wills in which they express their preferences for future care near the end of life.
Joar Björk and Anna Hirsch emphasize that the purpose behind the proposal for this new professional role is not to relieve healthcare professionals from their obligation to respect patients’ autonomy. On the contrary, they want to draw attention to all the skills and time-consuming tasks that are required to support patients in realizing their right to autonomy within the healthcare system. If we are to bridge the gap between ideal and reality, healthcare professionals may need the support of autonomy consultants, they argue.
One can of course discuss the name of the proposed professional role and how and to what extent the professional group can best assist the healthcare staff. One can also reflect on the plausibility of thinking in terms of a dichotomy between ideal and reality and a professional task of bringing them together. But through their proposal, Joar Björk and Anna Hirsch succeed in raising the issue of further efforts to strengthen patient autonomy in healthcare.
Read the article here: Autonomy ought-is gap and its potential solution: a call for ‘autonomy consultants’ in modern healthcare.
Written by…
Pär Segerdahl, Associate Professor at the Centre for Research Ethics & Bioethics and editor of the Ethics Blog.
Björk J, Hirsch A. Autonomy ought-is gap and its potential solution: a call for ‘autonomy consultants’ in modern healthcare. JME Practical Bioethics. 2026;2:e000117. https://doi.org/10.1136/jmepb-2026-000117
In dialogue with patients
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