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Court rules that patients have a right to disbelieve doctors

Dominic Wilkinson, University of Oxford; Bryanna Moore, University of Rochester, and Johnna Wellesley, The University of Texas Medical Branch

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.

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, Consultant Neonatologist and Professor of Ethics, University of Oxford; Bryanna Moore, Assistant Professor, Health Humanities and Bioethics, University of Rochester, and Johnna Wellesley, PhD Candidate, Bioethics, The University of Texas Medical Branch

This article is republished from The Conversation under a Creative Commons license. Read the original article.

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3 Comment on this post

  1. It becomes routine that the arguments presented by the courts are supportive of current regimes and understanding, for that is their role – to generally uphold regulative/social frameworks – and hence they may be viewed as largely presenting incremental changes/alterations to existing understandings of what is considered available or appropriate within the constraints of those frameworks. That rarely supports or promotes revolutionary change, and yet peoples final hopes, after any initial denial stage, may often seek revolutionary change, or faith based hope. Historically worldviews provided various ameliorations, engendering a form of positivity, others did not (think faith based human sacrifice/strong national sentiment, or misleading/drugging). So what does make it wrong to deny those positive life-force drives and systematically direct people with little or no hope into despair?
    A more generally relatable analogous comparator to these situations would be something like a civil passenger airline pilots ejector seat.
    e.g. An aircraft has severe technical difficulties from which it is not possible for the pilot to recover so entering the passenger compartment the pilot informs the passengers they should prepare themselves for a severe crash. Then returning to the pilots seat the pilot ejects from the aircraft (provided by the caring airline company) satisfied all processes have been followed, everything possible has been done, and feeling enough useful information has been garnered to improve this process in the future.

  2. Semper salus, sed voluntas aegroti suprema lex…. So not health but the autonomy of patient is decisive in the health care providing. Replacing the word “salus/health” by the word “voluntas/will, wish” symbolizes the change from patriarchal approach to the attitude that respects patient’s instructions. Also the Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine implements this approach respecting patient’s autonomy. The Jehovas Witnessess and their blood transfusion refusal is the example of this. This irrational wish must be respected even if it leads to the death of patient (see also decision of the European Court for Human Rights in case: Jehovah’s Witnesses of Moscow).

  3. The autonomy argument as presented becomes nonsense.
    Take a situation where a person fulfilling the criteria has stated a wish to die and is in the final stages of legal process to obtain official permission to do so.
    Then their doctor identifies a treatment which will save (or extend by a year or more) their life.
    Even supposing such circumstances are able to be responded to within a contractual clause which the person has agreed to they clearly no longer fit the original criteria (their autonomous wish becomes denied by the regulative regime). And regulation addressing such situations would also deny that autonomy. So where does individual autonomy arise?
    This type of situational example merely presents another professional ethical dilemma, if individual autonomy is to be supported, and while the above presents such an obviously simple argument that counters will no doubt exist, it remains relevant to individual autonomy.

    The ideals which lobbyists project into regulative bodies do not lead to simple solutions. They merely present simple arguments incorporating viewpoints supporting their own chosen perspective.

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