Abstract
Capacity, often linked with the exercise of patient autonomy, was considered again recently by the Court of Appeal in Thirumalesh Chellamal Hemachandran and Another v Sudiksha Thirumalesh (Deceased) (By her litigation friend, The Official Solicitor) and Others ([2024] EWCA Civ 896). This paper reviews that case and comments on it in the light of the two related key themes of capacity and patient autonomy. The paper concludes that only patients with capacity can exercise patient autonomy because a patient who lacks capacity cannot make a decision regarding their medical treatment.
Introduction
Capacity, often linked with the exercise of patient autonomy, was considered by the Court of Appeal in Thirumalesh Chellamal Hemachandran and Another v Sudiksha Thirumalesh (deceased) (by her litigation friend, The Official Solicitor) and Others [2024] EWCA Civ 896 (hereafter referred to as Re Thirumalesh (deceased)). This paper reviews that case and comments on it in the light of the two related key themes of capacity and patient autonomy. The paper concludes that only patients with capacity can exercise patient autonomy. Apart from this introduction, this paper has the following parts: (a) a review of the facts and decision in Re Thirumalesh (deceased), (b) a comment on the case with reference to capacity and autonomy, and (c) the conclusion.
Facts and decision
Aged 19, the patient suffered from a chronic incurable degenerative disease. She was admitted to hospital with community-acquired pneumonia and Covid-19 which resulted in a respiratory arrest. She had to be ventilated by tracheostomy, fed through a gastric tube and given dialysis every other day for the rest of her life. She did not wish to be moved to the palliative care treatment recommended by her treating clinicians and did not believe that her prognosis was as poor as those clinicians had told her. Rather, she wished to travel abroad and try experimental treatment for her condition. The NHS Foundation Trust sought a declaration from the Court of Protection that under the Mental Capacity Act 2005 (MCA 2005) she lacked capacity to make a decision about her medical treatment. Before the hearing the experts considered her to have capacity. But the judge held that she lacked capacity and made a declaration to that effect because, among other things, she did not believe the information about her condition and prognosis given to her by the treating clinicians, and so did not satisfy the “functional test” in s 3(1), MCA 2005 (i.e. she was unable to understand the information given to her, etc.). She died soon after the court declared she lacked capacity. Her parents then appealed against the declaration, one of the grounds being that the judge erred by relying on her lack of belief in her prognosis as showing conclusively that she failed the functional test under s 3(1), MCA 2005.
The appeal was allowed because there was no specific requirement of “belief” under s 3(1), MCA 2005 (in relation to the general requirement of understanding or the ability to weigh and use information). According to the court only an application of the statutory words without any gloss was required. So the judge’s conclusion, that the patient failed the functional test in s 3(1), MCA 2005, by refusing to believe the information about her prognosis, was wrong. Moreover, the judge had not given adequate reasons for reaching a conclusion that conflicted with the unanimous opinion of the experts that the patient had capacity to make decisions about her medical treatment. The declaration of incapacity was, therefore, set aside. This meant that (in accordance with s 1(2), MCA 2005) the patient was presumed to have had the capacity to always give or withhold her agreement to medical treatment up to her death.
Comment
The presumption of capacity on the patient’s part meant that her decision to travel abroad to seek experimental treatment, etc., would have been respected if she had not died before the Court of Appeal overturned the declaration that she lacked capacity. That decision would have been an autonomous one. Because patient autonomy is the right of a patient to make a decision about their treatment or what can be done to their body, we can say that only a patient with capacity can make such a decision. Capacity and autonomy will now be looked at.
Capacity
Meaning
Capacity is not directly defined by the MCA 1995. However, s 2(1), MCA 2005 defines lack of capacity as inability to make a decision because of impairment or disturbance in the functioning of the brain/mind. Then s 3(1) defines inability to make a decision as lack of the ability to: (a) understand the information, (b) retain the information, (c) use or weigh it to make the decision, and (d) communicate the decision. Therefore, we may define capacity as the ability to make a decision (i.e. to understand the information, etc.).
Principles relating to capacity
A few principles relating to capacity and applicable to the case will now be looked at.
First, there is a presumption of capacity. Section 1(2), MCA 2005 provides that “a person must be assumed to have capacity unless it is established that he lacks capacity”. The Court of Appeal’s ruling in Re Thirumalesh (deceased) clearly noted this.
Secondly, the decision made by the patient or person concerned, according to s 1(4), MCA 2005, does not have to be a wise one. On this point Lord Donaldson had earlier observed in Re T (Adult: Refusal of Treatment) [1993] Fam 95 (at 102) that the patient’s right of choice: “is not limited to decisions which others might regard as sensible. It exists notwithstanding that the reasons for making the choice are rational, irrational, unknown or even non-existent.”
The third principle relates to the words used in s 3(1)(a), MCA 2005: the patient only needs to understand, etc., not to believe the information. In Re Thirumalesh (deceased) [2024] EWCA Civ 896 at [45], Lady Justice King noted that about the statutory requirement in s 3(1)(a), MCA 2005 regarding the patient’s ability to understand the information, no reference was made by the Supreme Court in A Local Authority v JB [2021] UKSC 52 that the patient must believe the relevant information to be considered as having understood it. So the statutory words are enough and do not need any gloss or embellishment like “belief” being added re understanding of the information by the patient.
Fourthly, the patient must only understand in broad terms “the nature, purpose and effect of the treatment proposed” in order to have capacity under the MCA 2005 (Heart of England NHS Trust v JB [2014] EWHC 342 (COP)). Section 3(4), MCA 2005 provides that the information which the patient must be able to understand includes information about the reasonably foreseeable consequences of the decision. The patient in Re Thirumalesh (deceased) did have that understanding. She understood that her refusal to move to palliative care would foreseeably lead to her death ([82]). That was why “she was clear at all times in expressing her wishes, namely, that she wanted to be provided with all active care possible, to try experimental treatment and to ‘die trying to live’” (per King LJ at [32]).
Autonomy of patients
Meaning and related principles
In medical law autonomy is basically the right of a patient with capacity to make an informed decision about his or her care/treatment (i.e. the freedom to accept or refuse any treatment without interference or influence by any other person). As such, it is one of the central principles (not the primary or supreme principle) of medical law. Examples of it include the right to consent to treatment or to refuse treatment and the right to make an advance decision. Also in the medical context, the term “right to autonomy” has been said to be “misleading” because, although a patient has a right to decide what treatment he should not be given, he does not have the right to choose what treatment he wants to be given him. Herring and Wall have, therefore, suggested that a better expression is the “right to bodily integrity” (the right that nothing should be done to your body without your consent) or “the right to refuse treatment”. 1
One firm legal basis of patient autonomy is Cardozo's celebrated statement in Schloendorff v New York Hospital (1914) 105 NE 92: “Every human of adult years and sound mind has a right to determine what shall be done with his own body; a surgeon who performs an operation without his patient's consent commits an assault.”
Accordingly, if treatment is given to a patient without his or her consent, that is both morally wrong and legally wrong (battery in the law of tort and in criminal law) even if that treatment is in the patient’s best interests. The patient has the right to accept or refuse the treatment. 2 This shows how important autonomy is in medical law. The following statement of Berlin may also be said to support the principle of autonomy: “I wish my life and decision to depend on myself, not on external forces of whatever kind. I wish to be the instrument of my own, not of other men's act of will”. 3
A necessary condition for the exercise of patient autonomy is, in the present author’s view, capacity. One endorsement of this is the statement of MacDonald J in Kings College Hospital v C & V [2015] EWCOP 80 that “a capacitous individual is entitled to decide whether or not to accept medical treatment”. Another source of support is Lord Donaldson’s observation in In Re T (Adult: Refusal of Treatment) [1993] Fam 95 at 102: “An adult patient who … suffers from no mental incapacity has an absolute right to choose whether to consent to medical treatment, to refuse it or to choose one rather than another of the treatments being offered.”
In 2021 Lord Stephens, too, stated that if a person “has capacity to make a decision then he or she has the right to make an unwise decision and to suffer the consequences if and when things go wrong” (A Local Authority v JB [2021] UKSC 52, at [51]). In addition, Wall has argued that, for a person to act autonomously, it must be shown, inter alia, that he or she is able to act freely (without undue influence or interference of other people) and to exercise the “capacity for rational thought and cognition”. 4
In Re Thirumalesh (deceased) the Court of Appeal held that Sudiksha had capacity to make a decision about her treatment. Making that decision is an exercise of the right of autonomy. Without capacity she would not have been deemed able to make such decision. Therefore, one can correctly assert that capacity is required for a patient to exercise autonomy.
A further pertinent point about patient autonomy is that, though it includes the right to refuse treatment, it does not include the right to demand a particular treatment. There is no common law right of autonomy which entitles a patient to demand, and requires a clinician to provide, medical treatment that is not offered to that patient by their doctors (R (Burke) v General Medical Council (Official Solicitor and Other Intervening) [2005] EWCA Civ 1003, [2006] QB 273, and R (JJ) v Spectrum Community Health CIC [2023] EWCA Civ 885).
Limits of autonomy of patients
Patient autonomy, however, has some limits. The first is where the patient does not have capacity. Here, according to s 1(5), MCA 2005, the decision may be made for them in their best interests.
The second is where the autonomous decision will result in harm to others. In such circumstances the law will be expected to intervene. Indeed, as John Stuart Mill wrote: “the only purpose for which power can be rightfully exercised over any member of a civilized community, against his will, is to prevent harm to others. His own good, either physical or moral, is not a sufficient warrant … The only part of the conduct of anyone, for which he is amenable to society, is that which concerns others.”
5
The third limitation is where a mental patient is being detained under the Mental Health Act 1983. Under s 63 of that Act such a patient (even if capacitous) can be given treatment for their mental disorder without their consent.
In emergency situations we see a further limitation on autonomy. For example, where a road traffic or other accident has occurred and a victim of that accident is unconscious and, so, unable to make an autonomous decision and with no time to get a court approval, they may be treated without their consent in their best interests. Here the treatment team can rely on the doctrine (justification) of necessity (Re F [1990] 2 AC 1).
Conclusion
Capacity, as the foregoing shows, denotes the ability to understand information, retain it, use it to make a decision and then communicate that decision. Patient autonomy, a concept related to capacity, implies the right of a patient to make a decision about their treatment or what can be done to their body. Those two central concepts in medical law have been looked at in relation to the Court of Appeal’s decision in Re Thirumalesh (deceased). This paper concludes that only patients with capacity can exercise patient autonomy because a patient must, first, have capacity before they can effectively implement their right of autonomy.
Footnotes
Declaration of conflicting interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.
