There is a clear ethical and legal principle that adults have a right to make decisions about their health. This is sometimes called the principle of patient autonomy . That is, of course, why doctors need patients' consent before providing the treatment they recommend.
Authors
- Dominic Wilkinson
Consultant Neonatologist and Professor of Ethics, University of Oxford
- Bryanna Moore
Assistant Professor, Health Humanities and Bioethics, University of Rochester
- Johnna Wellesley
PhD Candidate, Bioethics, The University of Texas Medical Branch
But we only really notice the ethical significance of this principle when patients make choices that go against medical advice and that doctors think are unwise or even dangerous. If we respect autonomy, those choices, too, must be respected.
There is an important proviso: if the adult has or appears to have a physical or mental disorder that seriously impairs their ability to make decisions (their "capacity" to use the language used by English law), it may not be right to do as the adult wishes. In such cases, there are important legal processes to potentially make decisions for the adult patient.
But what if a patient simply does not believe the information that a doctor is telling them? Could that affect the patient's capacity to make decisions? A recent court case focused on this question.
In 2023, 19-year-old Sudiksha Thirumalesh became the focus of a legal dispute regarding her capacity to make decisions.
Thirumalesh suffered from a rare mitochondrial disorder and spent over a year in hospital in the UK in an intensive care unit. She depended on a breathing machine, artificial nutrition and kidney dialysis for her survival. The doctors caring for Thirumalesh judged that her disease had progressed, and she was dying.
They proposed transitioning her to a palliative treatment plan. Thirumalesh, along with her family, opposed the recommendation. While she accepted that her chances of recovery were "no more than 50%" , she did not believe the situation was as grave as the doctors were making it out to be. She wished to explore the possibility of experimental treatment overseas.
The key issue brought before the Court of Protection in September 2023 (and then the Court of Appeal earlier this year) was whether Thirumalesh's capacity to make decisions about her care was compromised by her refusal to believe her doctors.
In a controversial ruling, Justice Roberts held that Sudiksha Thirumalesh lacked decision-making capacity because she could not appropriately weigh or use the information provided by her medical team.
Ethical issues
Imagine that someone is trying to find their way to a distant destination in a strange city. To navigate, they have a map, they have received some directions and they draw on information they see around them (such as street signs).
Of course, the person might get lost or take a long time to get there. But in some cases, the person might be literally incapable of finding their way. For example, they might be unable to read the map, comprehend the directions or read the street signs.
Or they might have such severe memory problems that they can't remember where they are going, or whether they were told to turn left or right at the traffic lights. In those cases, we might think that it is important that someone else takes over the driving.
But what if they don't believe in what the map is telling them, or the directions?
As we outline in a recent paper , there are several reasons to be sceptical about belief as a basis for judging a patient to lack capacity.
First, a patient's values (the things to which they attach importance) can affect what they believe and even who they are able to believe. Factors like hope can play an influential role in shaping beliefs. But values are not the sort of thing that justify overruling a patient's choices.
Indeed, respecting autonomy fundamentally requires allowing patients to develop beliefs and make choices in line with their values. If someone values the challenge of finding their way without a map, that wouldn't give us a reason to navigate for them.
Second, it is important to distinguish between situations where someone is (a) capable of believing X but chooses not to do so and (b) where they are (literally) incapable of believing X.
The latter would arguably ground a judgment of incapacity. That might apply in the case of a person who is suffering from delusions of persecution and thinks that the map is fake and the people offering directions are all imposters. But chosen beliefs (or disbelief) are different.
A vaccine sceptic, for example, may disbelieve the information offered by all health professionals, but that does not make them incapable of deciding to have (or, more likely, refuse) a vaccine.
Based on the available evidence and expert testimony, Thirumalesh showed some understanding of the information provided to her and an appreciation of its significance.
Her stated desire to "die trying to live" appeared to indicate a recognition that at some point in the future, she may succumb to her condition. Her beliefs were motivated by her desire to survive and, therefore, an expression of her autonomy, not a threat to it.
Finally, to impose the beliefs of doctors on patients undermines the importance of partnership with patients and families, taking into consideration their values and preferences.
The appeal
Tragically, Sudiksha Thirumalesh died in September 2023 following a cardiac arrest, after an appeal was filed by her family (but before any stopping of the medical treatments keeping her alive).
Although the results of the appeal could not benefit Thirumalesh, the Court of Appeal agreed to hear it because of the wider significance of the issues raised. In a landmark ruling in July 2024, the Court of Appeal reversed the previous decision , affirming that while Thirumalesh's beliefs entailed a mistaken understanding of the clinical reality, they were not grounds for finding her to lack capacity.
In retrospect, it appears clear that Thirumalesh's doctors were right that she was reaching the end of the road in her illness. She did not believe this, but she retained the right to make choices about her medical treatment - at least for treatments that were available and appropriate.
This case demonstrates some of the difficulties, but also the important ethical principles in decision-making for seriously ill patients. When doctors assess "capacity" to make decisions, they ought to focus on the technical (cognitive) elements and not the evaluative elements. It is inherently risky to include someone's beliefs and values in capacity determinations.
A doctor, like a guide, should offer directions. They should try to help patients make good decisions about their health, including correcting, where possible, any misconceptions or misunderstandings. Ultimately, though, they should allow travellers (patients) to ignore that advice and walk in what looks like the wrong direction.
Dominic Wilkinson receives funding from Wellcome Trust.
Bryanna Moore and Johnna Wellesley do not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and have disclosed no relevant affiliations beyond their academic appointment.
