Capacity plays a vital role in determining whether a person can exercise autonomy in making choices in all aspects of life, from simple decisions to far-reaching decisions such as serious medical treatment medical or psychiatric treatment. In a legal context it refers to a person’s ability to make a decision, which may have legal consequences for the person themselves or for other people. Loss of capacity to make our own decisions is amongst the worst fates that can befall us. Concerns surrounding lack of capacity versus patient incompetence have long beleaguered health care staff with regard to patient consent for care and treatment. Given its broad role, the concept of capacity has now evolved into a sophisticated ethical and legal construct, but how adequately are the interests of those who lack of capacity protected by law?
Although the notion of informed consent was recognised in medical practice as early as the 1700s, it was not until the advent of the voluntary boarder status in the Lunacy Act 1890 and the voluntary patient in the Mental Treatment Act 1930 that the issue of capacity and consent for psychiatric treatments was first raised in non-detained patients. Although there had been legal rulings on the restraint of those with mental illness under common law in the past, it was not until the late 1980s that the courts began to develop clear common law principles governing treatment without consent.
Common Law on Capacity
The rule under common law to treat incapacitated adults without consent, but in their best interests, was laid down in Re F v. West Berkshire Health Authority. The ruling stated that doctors have the power, and in certain circumstances the duty, to treat incapacitated patients in their best interests. This case law utilised the ‘Bolam standard’ which states that a treatment fulfils the best interests criteria if it is in line with current competent medical opinion alternative. The legal definition of incapacity at that time remained ambiguous. Another common law test for assessing whether a patient has the mental capacity to exercise autonomy is that laid down most notably in Re C (Adult)(Refusal of Treatment). This case established criteria for incapacity in case law, which involved a patient with schizophrenia refusing amputation of his gangrenous leg. It was emphasised that a patient does not have to blindly accept medical evaluation and can have a level of self-assessment of any consequences.
In 1995 the Law Society and British Medical Association provided a similar joint definition of capacity for clinicians. In the same year recommendations from the Law Commission for a ‘Mental Incapacity Act’ were publishedFollowing consultation, the UK Government issued proposals for law reform based on these recommendations and the Mental Capacity Bill was introduced by the House of Commons and eventually The Mental Capacity Act 2005 came into force in England and Wales in 2007.
Mental Capacity Act 2005
The Mental Capacity Act 2005 Section 2(1) defines what the absence of capacity is. If, at the time the decision needs to be made, patients are unable to make or communicate the decision because of an ‘impairment of, or a disturbance in the functioning of, the mind or brain’, they are deemed incapable.
The test for capacity is contained in section 3 of the Mental Capacity Act 2005. It states that a person is unable to make a decision for himself if he is unable: a) to understand the information relevant to the decision, b) to retain that information, c) to use or weigh that information as part of the process of making the decision, or d) to communicate his decision (whether by talking, using sign language or any other means).
The concept of best interests survives the Mental Capacity Act 2005. Section 4 of the Act communicates the general legal and ethical rule that mentally incapacitated people should be treated in their ‘best interests’. Part of what makes up their “best interests” are patients’ own wishes and desires as well as consideration of what seems most beneficial clinically. When competence is lost, a fundamental consideration is the known past wishes and values of the incapacitated person. These may be formally recorded as a documented advance decision or advance statement or there may be a note in the patient record of verbal discussions which have taken place. There are many factors to take into account when considering what is in a patient’s best interests. It could be the views of welfare attorneys, court- appointed deputies or proxy decision-makers as well as patients’ close relatives, partners or carers about what the patient is likely to see as beneficial. If in the absence of such a clear steer on what the patient would have wanted, a clinical judgement needs to be made about the effectiveness of the proposed treatment, particularly in relation to other options. Furthermore, any knowledge of the patient’s religious, cultural and other non-medical views that might have an impact on the patient’s wishes should be taken into account.
Some people fear that once they become incapable of making decisions, they might be subject to medical interventions which are unable to deliver a level of recovery or quality of life that they would find acceptable. People who understand the implications of their choices can state in advance how they wish to be treated if they later suffer loss of mental capacity. This advance decisions are covered by the Mental Capacity Act 2005. An advance decision may describe a written document, a clear oral statement, a signed printed card or a note of a discussion recorded in the patient’s file. Any of these may convey a sense of the individuals’ wishes but to be legally binding an advance decision must satisfy certain criteria.
As a general principle, the law expects doctors to act reasonably in the circumstances in which they find themselves. In an emergency situation, where is it unclear whether or not an unconscious or otherwise mentally impaired patient has refused treatment in advance, it is reasonable not to delay treatment if that would result in a serious risk to the person’s life or health.
One potential problem is that patients with a serious diagnosis may not have envisaged a more unpredictable event such as a traffic accident when making their advance refusal of treatment. If their intention is clearly spelled out, it should be evident that the advance decision is not applicable to the current situation. If, however, it is unclear whether the individual intended an advance decision to apply in all circumstances of impaired capacity, including an apparently unforeseen situation, the validity of the advance decision should be accessed. The question here arises as to whether an advance decision drafted long before the Mental Capacity Act 2005 was passed would still be valid. The Act sets out the criteria that must be met for an advance directive to be legally binding but this mainly echoes what was already the common law. Therefore an existing decision may continue be valid but even if it not legally binding, a clear statement of the individual’s wishes can be helpful in establishing what would be in that person’s best interests.
Legal situation on proxy consent to treatment decisions
Until the implementation of the Mental Capacity Act 2005 in October 2007, nobody was legally able to make medical decisions on behalf of another adult in England and Wales. Under the Act, powers of attorney extend to health and welfare decisions. As well as consenting to or refusing medical treatment, personal welfare decisions can include questions about where the incapacitated person lives, their daily care, their social activities and arrangements for community care services. The legal transfer of health decision-making authority has to be specified and does not extend to refusing life-sustaining treatment unlessit is explicitly stated. Therefore, attorneys must abide by the principles of the Act and have to make decisions in the ‘best interests’ of the incapacitated person.
The Lasting Power of Attorney(LPA) allows attorneys to make decisions to accept or refuse medical treatment on the patient’s behalf once the patient is incapable of making the decision, unless the LPA has specified that the attorney should not make those decisions. An attorney cannot consent to treatment if the patient made a valid advance refusal of it, unless the LPA was made afterthe advance decision and transferred that decision to the attorney. Also if the patient wanted the attorney to have powers to accept or refuse life-prolonging treatment, the LPA must specifically state that. If the health team has a significant concern relating to medical treatment decisions taken under the authority of an LPA, the case can be referred for adjudication to the Court of Protection. When possible, patients should be assisted to make the decision in question for themselves and doctors may need to assess whether the person has the mental capacity to make a particular decision.
Independent mental capacity advocates
Another of the Mental Capacity Act’s innovations in England and Wales is the development of an independent advocacy scheme for particularly vulnerable incapacitated adults who lack other forms of support. This group of people will be consulted by an independent advocate about all decisions about ‘serious medical treatment’ or place of residence where patients lack capacity and have nobody to speak on their behalf. This advocate is an
independent person who helps to make sure the patient’s wishes are expressed and their voice is heard.
Proxy consent to research
Mental Capacity Act 2005 not only covers medical treatment decisions but also makes provision for mentally incapacitated people to be involved in research. Researchers must ascertain whether the patient although mentally impaired, can give a valid consent or refusal to being involved. If not, the general principles of the Act must be followed in terms of seeking the views of people close to the patient. Generally it would be a relative of the patient but could be a person involved in the patient’s care or interested in his or her welfare. A deputy appointed by the Court of Protection or an attorney acting under a registered LPA can be consulted about the patient’s participation in research, but not if the deputy or attorney are acting in a paid or professional capacity.
In addition, research involving incapacitated adults can only proceed provided it is related to the condition of the patient. Nevertheless, the research must be approved by a research ethics committee. It also must not be contrary to the patient’s interests and is likely either to benefit the patient or provide information to help others with similar conditions. Regulations have also been drawn up under the Act to cater for the management and protection of an adult enrolled in a research project who loses capacity after the research has commenced.
In general, a young person of any age can give valid consent to treatment or examination provided he or she is considered to be competent to make the decision. At the age of 16 there is a presumption that the patient is competent to give valid consent. Up to the age of 18 in England, Wales and Northern Ireland and up to the age of 16 in Scotland, where the person lacks capacity, a person or local authority with parental responsibility can give consent on behalf of the patient. Where the proposed intervention is controversial, agreement between parents is desirable. If this cannot be achieved, ethical and legal advice should be sought.
The Court of Appeal in Darren and Deborah Wyatt v Portsmouth Hospital NHS Trust (1) Charlotte Wyatt (2) concluded that when making a decision in a child’s best interests, the welfare of the child is paramount and the quality of a child’s life must be looked at from the child’s perspective and not the parents’ or doctors’ point of view. The responsible clinician must undertake a balancing exercise weighing all relevant factors. One factor may be whether the child’s life has, or will, become ‘intolerable’ but this is only one factor to be put into the balance. There is of course a strong presumption in favour of prolonging life but this is not absolute and does not circumvent the need to consider the best interests test.
The wishes of a child who has the capacity to decide whether to consent to or refuse a proposed treatment should be respected. However, the legal position in England and Wales means that, in some circumstances where a child has made a competent refusal of a treatment, a person with parental responsibility, or the courts, may nevertheless authorise the treatment where it is in the child’s best interests 19.
Termination of pregnancy
Termination of pregnancy in the mentally incapacitate or minors should not be regarded as different from any other aspect of medical treatment; the principles involved are therefore best considered within the whole spectrum of consent. In respect of minors, the courts will, in the event of conflict, always put the interests of young mother above those of her fetus. The Abortion Act itself makes no distinctions as to age groups but from a point of view, it is reasonably to assume that the majority of children who are old enough to become pregnant are also old enough to understand the consequences; the conditions laid down in Gillick would then apply. If a pregnant woman who lacks of capacity wishes to terminate her pregnancy, the fundamental test will be whether, in all circumstances, abortion is in the best interests of the woman, which is now be governed by Mental Capacity Act 2005. Before the Act came into force, in T v T, a nineteen year old girl was pregnant and she was examined to have a mental age of two. In fact, she was doubly incontinent and incapable of any comprehensive speech. Therefore, no one else could authorise treatment on her behalf as she was an adult at that time but it was clear that she was incapable of giving consent to the proposed abortion. Wood J granted a declaration that performing an abortion on T was lawful if that operation was considered to be in her best interests and in conformity with good medical practice. However, it should be noted that in determining her best interests, regard must be had for any views or feelings the woman herself expresses, or has expressed, in the past. Almost certainly, many abortions are carried out on the mental handicapped under the twin cover of good medical practice and legal necessity.
Mental Health Act
On a different approach, the remit of Mental Health law can be considered as different from Mental Capacity law, which is intended to provide decision-making for those unable to do so, which includes medical treatment. If a patient suffering mental disorder is detained under the Mental Health Act 1983 he may be subjected to treatment against his wishes, although it is still good practice to explain the treatment to be provided and, wherever possible, to seek the patient’s agreement. However, the law does not provide the doctor with authority to proceed where the treatment is for a condition unrelated to the mental disorder. In those circumstances, the patient’s competence should be assessed and, if he or she is deemed to lack decision-making capacity, the doctor should act in the patient’s best interests.
Problem arises when there is overlap where a person lacking capacity is actively refusing treatment for a mental disorder. This has been a longstanding grey area recognised since the Bournewood case, in which a man with autism was detained in hospital for treatment without recourse to the Mental Health Act 1983 as it was judged that he lacked capacity. This high-profile case has been taken to the European Court of Human Rights and a judgment was released in October 2004(HL v. UK, European Court of Human Rights) C  J 4269.The European Court of Human Rights has ruled that in the Bournewood case, the patient was deprived of his liberty as there were insufficient procedural safeguards in place regarding his admission and continued detention. The current state of play in the Act is that incapacitated patients actively refusing treatment for mental disorder will come under the jurisdiction of the Mental Health Act 1983, which will trump the Capacity Act. However, concern about the discrimination inherent in such an approach, whereby assenting incapacitated patients are denied the safeguards of mental health legislation with the built-in mechanisms for appeal and second opinion. Unless some similar provision for regular review of their circumstances is built into the Mental Capacity Act then it runs the risk of incompatibility with the Human Rights Act 1998.
Withdrawing and withholding life-sustaining treatment
The Mental Capacity Act contains special safeguards in relation to the withdrawing and withholding of life-sustaining treatment in relation to an adult who lacks capacity. The Section 4(5) MCA 2005 explains that where the determination relates to life-sustaining treatment he must not, in considering whether the treatment is in the best interests of the person concerned, be motivated by a desire to bring about his death.
In 1998, the British Medical Association undertook a wide-ranging consultation exercise, which confirmed the need for guidance on decisions to withhold or withdraw life-sustaining treatment. As a result, Withholding and Withdrawing life-prolonging Treatments Guidance was developed with the recommendations in Good Medical Practice (2006) and Seeking patients’ consent: The ethical considerations . Part 1; para 14 and para 15 of the guidance sets out the standards of practice expected of doctors when they consider whether to withhold or withdraw life-prolonging treatments for adults’ patients who are unable to decide for themselves.
In terms of life-prolonging interventions, health professionals have a legal as well as an ethical duty to protect life, under Article 2 of the European Human Rights Convention, but its scope is limited. In some circumstances, however, advance requests for specific life-prolonging treatment such as artificial nutrition and hydration should be respected. The Burke case clarified that doctors have a duty to take reasonable steps to comply with a patient’s request that artificial nutrition and hydration be provided in future when he or she could no longer communicate.
In addition, where the advance decision to refuse treatment relates to life-sustaining treatment, special conditions apply. It must incorporate a statement that the decision stands, even if life is at risk. It must be in writing, signed, witnessed and verified by the author S.25(5)-(6).
However, there are still criticisms that somehow the guideline may amounts to ‘back door euthanasia’ and it leaves desperately ill and incapacitated people at terrible risk from unscrupulous families or advisers. It gives legal force to living wills which mean someone can set out the treatment they should have if they become incapacitated and unable to communicate or act for themselves. The test of lawfulness remains the best interests of the patient but an element of substituted judgment is incorporated into the statutory checklist for best interests.
The law on capacity and best interests will continue to develop.