The issue of a patient’s refusal of medical care, and in particular the right of a mentally ill person to refuse care, arises often on this blog.
Last month, in PBU & NJE v Mental Health Tribunal  VSC 564, Justice Bell of the Supreme Court of Victoria had two consider whether two people could refuse electroconvulsive treatment (‘ECT’) that had been ordered by the Mental Health Tribunal on the recommendation of their treating doctors.
This is a long post but it is important to remind everyone the important value that the law places on personal integrity and a person’s right to choose and to make decisions, even bad decisions, for themselves.
Under the Mental Health Act 2014 (Vic) a person is presumed to be capable of giving consent until it is established that they cannot. At - Bell J said:
It would be discriminatory and a grave violation of human rights to regard a person having mental illness as lacking capacity to give informed consent merely because the person has that illness and the legislation does not operate upon this basis. Section 70(2) provides that anyone seeking the informed consent of another to treatment or medical treatment must presume that the other person has the capacity to give informed consent…
If the treatment does not involve ECT or neurosurgery, the authorised psychiatrist may make a compulsory treatment decision if satisfied that no less restrictive treatment option is available (s 71(3)), even if the person has capacity to give informed consent and refuses to give it…
What follows is that where a person is able to give informed consent they may still be subject to compulsory mental health treatment even if they refuse that consent. The exception to that rule is in neurosurgery to treat a mental illness and ECT. With respect to ECT, compulsory treatment can only be ordered if the person is incapable of given informed consent; not where they are capable and refuse consent. The issue of what it means to be ‘capable’ to give consent was therefore critical in this case.
Victoria has Charter of Human Rights and Responsibilities Act 2006 (Vic) that is intended to give effect to rights recognised by the international community through instruments such as the International Covenant on Civil and Political Rights, the International Covenant on Economic, Social and Cultural Rights and the Convention on the Rights of Persons with Disabilities. One of the rights is the right to be free from medical treatment without consent. At - Bell J said:
The right to be free of non-consensual medical treatment is specified in s 10(c) of the Charter [of Human Rights and Responsibilities Act2006 (Vic)] thus:
“A person must not be— …
(c) subjected to medical … treatment without his or her full, free and informed consent.”
In Kracke [(2009) 29 VAR 1], the following remarks were made about the general nature and purpose of this right:
‘Personal autonomy is a value that informs much of the common law.’ An example is that, when the common law is considering the duty of a doctor to warn a patient about the possible adverse effects of medical treatment, the starting point is ‘the paramount consideration that a person is entitled to make his own decisions about his life’. That should be the starting point under s 10(c) of the Charter. Forcing a person of full mental capacity to have unwanted medical treatment is a serious affront to their personal dignity and autonomy in itself. The fact the treatment may be medically warranted is not at this stage the point. Remember, we are dealing here with people who, though mentally ill, still have full legal capacity [or are presumed to have that capacity]. The right to refuse unwanted treatment respects the person’s freedom to choose what should happen to them, which is an aspect of their individual personality, dignity and autonomy.
The right is especially important in the context of treating someone for mental illness. People can be extremely sensitive about taking the powerful drugs that are often prescribed. However medically necessary they may be, the drugs can cause alterations to mood, behaviour and body weight, as well as personal appearance, which can be very distressing. As [was submitted], such drugs can affect the very ‘reality’ in which a person lives. Section 10(c) of the Charter recognises the importance of this right to refuse, because it respects the personal dignity and autonomy of people with mental illness.
The judge made these comments about the right to refuse or the obligation to obtain consent at common law. The quote is long but worth repeating:
Principles of common law and human rights regarding capacity
Self-determination and personal autonomy
Self-determination is a fundamental value that is protected by the human right to privacy, among other rights (see above). It is also well-established in the common law. In Airedale NHS Trust v Bland, Lord Goff held that ‘the principle of self-determination requires that respect must be given to the wishes of [a] patient’ to consent to or refuse medical treatment.In doing so, his Lordship referred to the illuminating judgment of Hoffmann LJ in the Court of Appeal, which drew attention to the close connection between ‘respect for the individual human being and in particular for his right to choose how he should live his own life’ and ‘respect for the dignity of the individual human being’ which is ‘an intrinsic value’.
The close connection between self-determination and human dignity explains the importance of self-determination to the individual personally. So important to the individual personally is it that Robins, Catzman and Carthy JJA in Malette v Shulman held:
Individual free choice and self-determination are themselves fundamental constituents of life. To deny individuals freedom of choice with respect to their health care can only lessen, and not enhance, the value of life.
In Heart of England NHS Foundation Trust v JB, Peter Jackson J, after referring to the significance of a person’s ‘own system of values’ when deciding whether to consent to or refuse medical treatment, said ‘[t]he freedom to choose for oneself is a part of what it means to be a human being’.
The principle of self-determination is at risk when decisions about capacity are being made, including in relation to people with mental disability. While a person may need access to medical treatment, a person having capacity can decide to refuse the treatment even if it is medically necessary (see below). If medical treatment is compulsorily administered to the person because the person’s capacity for self-determination is incorrectly not recognised or denied, this ‘severely infringe[s] upon [the] person’s right to self-determination’, because ‘[t]he right to refuse unwanted medical treatment is fundamental to a person’s dignity or autonomy’. For the individual, capacity decisions therefore involve very high stakes.
Personal inviolability and the civil/criminal law
Personal inviolability too is a fundamental value that is protected by the human right to privacy, among others(see above). It too is a fundamental principle of the common law. Thus, in Collins v Wilcock, Robert Goff LJ said that ‘[t]he fundamental principle, plain and incontestable, is that every person’s body is inviolate’. In Marion’sCase, Mason CJ, Dawson, Toohey and Gaudron JJ referred to the ‘fundamental right to personal inviolability existing in the common law’.
Under principles discussed byWilliam Blackstone, the common law does not draw distinctions between degrees of violence. Therefore the merest touching of a person is unlawful unless justified, and the position is the same under the human right to privacy.Vindication of human dignity is the purpose of the common law in this respect.It follows that, except in cases of emergency, to administer medical treatment to a person’s body without the person’s consent, if the person has the capacity to give consent, is a civil and criminal assault or battery. This, explainedMason CJ, Dawson, Toohey and Gaudron JJ in Marion’sCase:
reflects the principle of personal inviolability echoed in the well-known words of Cardozo J in Schloendorff v Society of New York Hospital:
‘Every human being of adult years and sound mind has a right to determine what shall be done with his own body; and a surgeon who performs an operation without his patient’s consent commits an assault’.
Making the connection between self-determination and personal inviolability, in R (B) v Dr SS Charles J held emphatically that
the right to integrity of the person and the right to self-determination are fundamental human rights …Medical treatment is always an interference with the first of these rights, the right to integrity of the person, and constitutes an unlawful assault and battery in the absence of some lawful justification for it …
Putting aside emergency cases, it is the consent of the patient that makes the medical intervention lawful when it would otherwise be unlawful. In Re T(Adult: Refusal of Treatment), Lord Donaldson MR (Butler-Sloss and Staughton LJJ agreeing) said that a person who is capable of exercising a choice ‘must consent if medical treatment of him is to be lawful’. The application of this principle is graphically illustrated by the judgment of theOntario Court of Appeal in Malette. An award of damages against a doctor was upheld because he committed the tort of battery by treating an unconscious but capacitous patient without his consent when his lack of consent had been made manifest. It was no justification that, without the treatment, the patient’s life would have been threatened.
The appropriate test for capacity, both at common law and under the Victorian legislation, is a functional test, that is the question is ‘whether, at the time the decision had to be made, the person could understand its nature and effects’ (see ). It is not an outcome test that is whether it is a good or wise decision. At - and - Bell J said:
The rejection of the ‘outcome’ approach in favour of the ‘functional’ approach when the capacity standard was formulated is associated with the principle that a person is not to be treated as lacking capacity by reason of making a decision that could be considered to be objectively unwise (s 1(4) of the MentalCapacity Act [(UK)}and ss 11(1)(d) and 68(2)(d) of the Mental Health Act[(Vic)]). This principle recognises the dignity of risk. As Quinn J in Re Koch said:
It is mental capacity and not wisdom that is the subject of the [capacity legislation]. The right knowingly to be foolish is not unimportant; the right to voluntarily assume risks is to be respected. The State has no business meddling with either. The dignity of the individual is at stake.
Thus, by reason of the primacy of individual self-determination, the decision of a person (including someone with mental disability) able to make a decision must be respected, however unreasonable it may seem to others. This principle informs the legal relationship between doctor and patient, as explained by Lord Templeman in Sidaway v Board of Governors of Bethlem Royal Hospital and the Maudsley Hospital:
Where the patient’s health and future are at stake, the patient must make the final decision. The patient is free to decide whether or not to submit to treatment recommended by the doctor… if the doctor making a balanced judgment advises the patient to submit to the operation, the patient is entitled to reject the advice for reasons which are rational, or irrational, or for no reason. The duty of the doctor in these circumstances, subject to his overriding duty to have regard to the best interests of the patient, is to provide the patient with information which will enable the patient to make a balanced judgment if the patient chooses to make a balanced judgment.
In Malette, Robins, Catzman and Carthy JJA explained the relationship in the same way:
The right of self-determination which underlies the doctrine of informed consent also obviously encompasses the right to refuse medical treatment. A competent adult is generally entitled to reject a specific treatment or all treatment, or to select an alternate form of treatment, even if the decision may entail risks as serious as death and may appear mistaken in the eyes of the medical profession or of the community.Regardless of the doctor’s opinion, it is the patient who has the final say on whether to undergo the treatment … for this freedom to be meaningful, people must have the right to make choices that accord with their own values regardless of how unwise or foolish those choices may appear to others …
When it comes to assessing whether a person (whether mentally disabled or not) has the capacity to consent to or refuse medical treatment, the same principle applies. As Lord DonaldsonMR (Butler-Sloss LJ agreeing) stated in ReT:
[The] 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 …
Butler-Sloss LJ added:
A decision to refuse medical treatment by a patient capable of making the decision does not have to be sensible, rational or well-considered.
This approach has been followed by courts of high authority in England and has been approved in superior courts in Australia…
Despite the irrelevance of the outcome of the decision to the assessment of the person’s capacity, the tendency to make that assessment by reference to the person’s (so-called objectively reasonable) best interests is strong, so much so that the courts have frequently stressed the need to guard against it. York City Council was a case in which a wife with learning difficulties wanted to resume cohabitation with her sex-offending husband upon his release from prison. Refusing to intervene, McFarlane LJ (Richards LJ agreeing) held:
There may be many women who are seen to be in relationships with men regarded by professionals as predatory sexual offenders. The Court of Protection does not have jurisdiction to act to ‘protect’ these women if they do not lack the mental capacity to decide whether or not to be, or continue to be, in such a relationship. The individual’s decision may be said to be ‘against the better judgment’ of the woman concerned, but the point is that, unless they lack mental capacity to make that judgment, it is against their better judgment. It is a judgment that they are entitled to make.
In Heart of England NHS Foundation Trust, the issue was whether a person with a mental disability had the capacity to refuse to consent to an amputation of the leg below the knee. Finding that the person had that capacity despite his mental illness, Peter Jackson J stated that best interests considerations must not be allowed to dominate capacity assessments:
The temptation to base a judgment of a person’s capacity upon whether they seem to have made a good or bad decision, and in particular upon whether they have accepted or rejected medical advice, is absolutely to be avoided. That would be to put the cart before the horse or, expressed another way, to allow the tail of welfare to wag the dog of capacity. Any tendency in this direction risks infringing the rights of that group of persons who, though vulnerable, are capable of making their own decisions. Many who suffer from mental illness are well able to make decisions about their medical treatment, and it is important not to make unjustified assumptions to the contrary.
This statement was cited with approval and applied by MacDonald J in King’sCollege Hospital NHS Foundation Trust v C & V in a case involving a decision by a highly eccentric individual to refuse life-saving medical treatment. As the Secretary submitted in the present case, the following statement by MacDonald J in that case applies equally to the interpretation and application of s 68(1)(c) of our Mental Capacity Act:
a person cannot be considered to be unable to use and weigh information simply on the basis that he or she has applied his or her own values or outlook to [the relevant] information in making the decision in question and chosen to attach no weight to that information in the decision making process.
The judgment of MacDonald J, and those of Peter Jackson J in Heart ofEngland NHS Foundation Trust and WyeValley NHS Trust v B and the plurality in Starson v Swayze, all concerned with highly eccentric individuals, are notable for applying the capacity test in a way that is criteria-focused, evidence-based, patient-centred and non-judgmental.
The mentally ill
In PBU & NJE the issue was a person who was mentally ill refusing treatment and that may affect their capacity to understand the information being given. His Honour summarised the relevant legal principles at :
(1) The primary purpose of the Mental HealthAct is to ensure that people with mental illness, including those lacking the capacity to give informed consent, receive treatment for that illness (s 1(a); see also ss 10(a), 10(f), 11 and especially 72). But the legislative intention is that this is to be done in a manner that affords equal respect for their human rights and particularly their right to self-determination, to be free of non-consensual medical treatment and to personal inviolability, as recognised in the Charter.
(2) Consistently with affording that respect and the position at common law for people generally, there is a (rebuttable)presumption that people with mental illness (as for people without that illness) have the capacity to give informed consent (s 70(2)). Capacity to give informed consent is issue-specific (s 68(2)(a)), can fluctuate (s 68(2)(b)) and may be enhanced with support, all of which may have significant implications for the capacity-assessing process and the ultimate determination.
(3) Reflecting the common law, the test of capacity in s 68(1) is primarily a functional one in which the question is whether the person has the ability to remember and use or weigh relevant information and communicate a decision, not whether the person has actually done so (paras (b), (c) and (d)). The purpose of the functional test (as distinct from a status or outcome-based test) is to ensure that, in relation to capacity to give informed consent, people with mental illness are afforded the same respect for their inherent dignity and autonomy-space as people not having that illness. In relation to s 68(1)(a), the question is whether the person understands the information.
(4) The capacity test must be applied in anon-discriminatory manner so as to ensure that people with mental illness are not deprived of their equal right to exercise legal capacity upon the basis of contestable value-judgments relating to their illness, decisions or behaviour, rather than upon the basis of the neutral application of the statutory criteria(s 68(2)(c)). In short, the test is not to be applied so as to produce social conformity at the expense of personal autonomy.
(5) A person with mental illness is not to be found lacking the capacity to give informed consent simply by reason of making a decision that could be considered unwise (s 68(2)(d)), which recognises that self-determination is important for both dignity and health and that people with mental illness should have the same dignity of risk in relation to personal healthcare decision-making as other people. This reflects the two-way relationship between self-determination, freedom from non-consensual medical treatment and personal inviolability on the one hand and personal health and wellbeing on the other.
(6) Reflecting human rights consideration, the Mental Health Act rejects the best-interests paradigm for healthcare decision-making. Those assessing capacity under s 68(1)–(2) must vigilantly ensure that the assessment is evidence-based, patient-centred, criteria-focussed and non-judgmental, and not made to depend, implicitly or explicitly, upon identification of a so-called objectively reasonable outcome.
(7) The threshold of capacity in s68(1)(a)–(d) is relatively low and requires only that the person understands and is able to remember and use or weigh the relevant information and communicate a decision in terms of the general nature, purpose and effect of the treatment.The threshold is not that the person understands the information sufficiently to make a rational or well-considered decision, is able make such a decision or has actually done so. The person does not need to have an understanding and possess those abilities in terms of the actual details of the proposed treatment but only the salient features.
(8) Acceptance of, belief in and insight into the diagnosis of illness and need for treatment varies significantly depending upon the person and the situation. It is not a normative criterion ins 68(1)(a)–(b). Depending upon the facts of the case, a person with mental illness may lack that insight or otherwise not accept or believe that the person has a mental illness or needs treatment yet may have the capacity to give informed consent when assessed under the statutory test. The opposite maybe so.
(9) [issues to do with the legal burden of proof]…
(10) The provisions of the Mental Health Act are predicated upon the central purpose of ensuring that persons with mental illness have access to and receive medical treatment, consistently with the person’s right to health. Where, consistently with the above principles, it is established that the patient does not have the capacity to give informed consent and there is no less restrictive way for the patient to be treated, VCAT must grant an application for ECT (s 96(1)(a))because, under the legislative scheme and subject to its safeguards, this is a necessary means of ensuring that the patient is given that treatment.
His Honour found that both PBU and NJE did have capacity to give informed consent but declined to do so. Their decision had to be respected and ECT could not be administered as part of a compulsory treatment order.
This case has limited application to paramedics and others. In some jurisdictions paramedics have authority to detain a person and transport them to a mental health facility. As noted above compulsory treatment can be given even where the patient can consent but refuses to do so (provided the relevant criteria in the state or territory legislation is established). It is only in the case of neurosurgery or ECT that the patient’s refusal is binding and paramedics aren’t administering that treatment.
The reason for this long post is therefore not for the specific issues but the broader principles. On this blog there are many questions about treating people without consent, where consent has been refused, where the person is incapable of giving or refusing consent or where the person appears to be mentally ill and a danger to themselves or to others.
What this case repeats is that the right to make decisions about medical treatment is a fundamental right and the relevant question is the persons capacity to understand the nature and effect of the proposed treatment, not whether the decision appears, in the eyes of someone else, to be smart and sensible. The right to bodily integrity and the right to choose are fundamental rights protected by law.
In the course of this judgement Bell J put aside the emergency case, but an emergency does not mean the patient’s wishes can be disregarded. In this case His Honour was not dealing with an emergency so did not discuss the case law but I would go back to Lord Goff’s statements in In Re F  2 AC 1 (emphasis added):
Upon what principle can medical treatment be justified when given without consent? We are searching for a principle upon which, in limited circumstances, recognition may be given to a need, in the interests of the patient, that treatment should be given to him in circumstances where he is (temporarily or permanently) disabled from consenting to it. It is this criterion of a need which points to the principle of necessity as providing justification.
That there exists in the common law a principle of necessity which may justify action which would otherwise be unlawful is not in doubt…
The basic requirements, applicable in these cases of necessity, that, to fall within the principle, not only (1) must there be a necessity to act when it is not practicable to communicate with the assisted person, but also (2) the action taken must be such as a reasonable person would in all the circumstance take, acting in the best interests of the assisted person.
On this statement of principle, I wish to observe that officious intervention cannot be justified by the principle of necessity. So intervention cannot be justified when another more appropriate person is available and willing to act; nor can it be justified when it is contrary to the known wishes of the assisted person, to the extent that he is capable of rationally forming such a wish.
Where it is known that a person has, when competent, refused consent for treatment in the circumstances that have now arisen, that decision must be honoured.
Putting aside the question of mental illness one can see how important this is for paramedic practice. There is often discussion about a person’s right to refuse treatment including lifesaving treatment such as CPR. A paramedics job is not necessarily to save someone’s life but to respect their right to integrity and autonomy.
If we are not willing to honour people’s wishes at the end of their life, at the very time those wishes are expected to be honoured, when those wishes are most important then the issue of consent and the right to bodily integrity becomes meaningless. If a refusal is only honoured when it doesn’t really matter or when the treating professional thinks it makes sense to them, then we are moving back to medical paternalism and away from what is important to us all, the right to make choices for ourselves.
Note also the discussion on the ‘dignity of risk’ that is the right of people to make their own choices – to take their risk whether to accept offered treatment, or ride a motorcycle, or smoke cigarettes etc. The dignity of humans and the value of the life to them is enhanced if people are allowed to make their own assessment.
This concept is also relevant to readers of this blog and those in the emergency management sector. In today’s world we want to believe that we can manage every risk and even that all risks can be reduced to zero. That is of course untrue. Risk is everywhere and we decide which ones we want to accept. The law is reluctant to stop people acting, or requiring people to act, in their own best interests. There is warrant to restrict risk taking if it exposes others to risk but if the risk is risk to you then its your business. That concept in my view puts in context demands by emergency managers and emergency services that people ‘do what they are told’ and also fear that the emergency services will be somehow liable if people die or are injured for taking risks.
Put simply if someone wants to live in a fuel rich environment or on a flood plain, the fact that it may not be the best or smartest thing to do is no reason to stop them. The fact that it may put others at risk may justify regulation but their own best interest does not.
This long post is important to remind emergency services personnel and emergency managers of the value the law puts on personal autonomy and the right of people to make their own choices – for good or ill. People in the emergency services want to do what they can and they want, often at all costs, to preserve life. There are temptations to want to override what might be considered poor decisions. Whilst the discussion in PBU & NJE v Mental Health Tribunal is not of direct application, the principles are worth noting and keeping in mind when considering how to respond to people who wish to make their own, perhaps unwise, decisions.