Capacity

Capacity is at the heart of ethical decision-making because it is the gateway to self-determination (Box 1.4). People are able to make choices only if they have capacity. The assessment of capacity is a significant undertaking: a patient’s freedom to choose depends on it. If a person lacks capacity, it is meaningless to seek consent. In the UK, the Mental Capacity Act 2005 sets out the criteria for assessing whether a person has the capacity to make a decision (see Ch. 23, p. 1191).

Assessment of capacity is not a one-off judgement. Capacity can fluctuate and assessments of capacity should be regularly reviewed. Capacity should be understood as task-oriented. People may have capacity to make some choices but not others and capacity is not automatically precluded by specific diagnoses or impairments. The way in which a doctor communicates can enhance or diminish a patient’s capacity, as can pain, fatigue and the environment.

Consent

Consent is integral to ethical and lawful practice. To act without, or in opposition to, a patient’s expressed, valid consent is, in many jurisdictions, to commit an assault or battery. Obtaining informed consent fosters choice and gives meaning to autonomy. Valid consent is:

Advance decisions

Advance decisions (sometimes colloquially described as ‘living wills’) enable people to express their wishes about future treatment or interventions. The decisions are made in anticipation of a time when a person ceases to have capacity. Different countries have differing approaches to advance decision-making and it is necessary to be aware of the relevant law in the area in which one is practising. Within the UK, advance decisions are governed by legislation, for example the Mental Capacity Act 2005 applies in England and Wales. The criteria for a legally valid advanced decision are that it is:

In practice, it is often the requirement of specificity that is most difficult for patients to fulfil because of the inevitable uncertainty surrounding future illness and potential treatments or interventions. There is one difficulty that for many goes to the heart of an ethical objection to advance decision-making, namely that it is difficult to anticipate the future and how one is likely to feel about that future.

Best interests of patients who lack capacity

Where an adult lacks capacity to give consent, and there is no valid advance decision or power of attorney in place, clinicians are obliged to act in the patient’s best interests. This encompasses more than an individual’s best medical interests. In practice, the determination of best interests is likely to involve a number of people, for example members of the healthcare team, professionals with whom the patient had a longer-term relationship, and relatives and carers.

In England and Wales, an Independent Mental Capacity Advocacy Service provides advocates for patients who lack capacity and have no family or friends to represent their interests. ‘Third parties’ in such a situation, including Independent Mental Capacity Advocates, are not making decisions; rather, they are being asked to give an informed sense of the patient and his or her likely preferences. In some jurisdictions, e.g. in North America, clinical ethicists play an advocacy role and seek to represent the patient’s best interests.

Mental health and consent

The vast majority of people being treated for psychiatric illness have capacity to make choices about healthcare. However, there are some circumstances in which mental illness compromises an individual’s capacity to make his or her own decisions. In such circumstances, many countries have specific legislation that enables people to be treated without consent on the basis that they are at risk to themselves and/or to others.

People who have, or are suspected of having, a mental disorder may be detained for assessment and treatment in England and Wales under the Mental Health Act 2007 (which amended the 1983 statute). There is one definition of a mental disorder for the purposes of the law: The Mental Health Act 2007 defines a mental disorder as ‘any disorder or disability of the mind’. Addiction to drugs and alcohol is excluded from the definition. Appropriate medical treatment should be available to those who are admitted under the Mental Health Act. In addition to assessment and treatment in hospital, the legislation provides for Supervised Community Treatment Orders, which consist of supervised community treatment after a period of detention in hospital. The law is tightly defined with multiple checks and limitations which are essential given the ethical implications of detaining and treating someone against his or her will.

Even in situations in which it is lawful to give a detained patient psychiatric treatment compulsorily, efforts should be made to obtain consent if possible. For concurrent physical illness, capacity should be assessed in the usual way. If the patient does have capacity, consent should be obtained for treatment of the physical illness. If a patient lacks capacity because of the severity of a psychiatric illness, treatment for physical illness should be given on the basis of best interests or with reference to a proxy or advance decision, if applicable. If treatment can be postponed without seriously compromising the patient’s interests, consent should be sought when the patient once more has capacity.

Consent and children

Where a child does not have the capacity to make decisions about his or her own medical care, treatment will usually depend upon obtaining proxy consent. In the UK, consent is sought on behalf of the child from someone with ‘parental responsibility’. In the absence of someone with parental responsibility, e.g. in emergencies where treatment is required urgently, clinicians proceed on the basis of the child’s best interests.

Sometimes parents and doctors disagree about the care of a child who is too young to make his or her own decisions. Here, both national and European case law demonstrates that the courts are prepared to override parental beliefs if they are perceived to compromise the child’s best interests. However, the courts have also emphasized that a child’s best medical interests are not necessarily the same as a child’s best overall interests. Whenever the presenting patient is a child, clinicians are dealing with a family unit. Sharing decisions, and paying attention to the needs of the child as a member of a family, are the most effective and ethical ways of practising.

As children grow up, the question of whether a child has capacity to make his or her own decisions is based on principles derived from a case called Gillick v. West Norfolk and Wisbech Area Health Authority, which determined that a child can make a choice about his or her health where:

The Gillick case recognized that children differ in their abilities to make decisions and established that function, not age, is the prime consideration when considering whether a child can give consent. Situations should be approached on a case-by-case basis, taking into account the individual child’s level of understanding of a particular treatment. It is possible (and perhaps likely) that a child may be considered to have capacity to consent to one treatment but not another. Even where a child does not have capacity to make his or her own decision, clinicians should respect the child’s dignity by discussing the proposed treatment even if the consent of parents also has to be obtained.

In the UK, once a child reaches the age of 16, the Mental Capacity Act 2005 states that he or she should be treated as an adult save for the purposes of advance decision-making and appointing a lasting power of attorney.

Respecting confidentiality in practice

Patients should understand that information about them will be shared with other clinicians and healthcare workers involved in their treatment. Usually, by giving consent for investigations or treatment, patients are deemed to give their implied consent for information to be shared within the clinical team. Very rarely, patients might object to information being shared even within a team. In such situations, the advice is that the patient’s wish should be respected unless it compromises treatment. In almost all clinical circumstances, therefore, the confidentiality of patients must be respected. Unfortunately, confidentiality can be easily breached inadvertently. For example, clinical conversations take place in lifts, corridors and cafes. Even on wards, confidentiality is routinely compromised by the proximity of beds and the visibility of whiteboards containing medical information. Students and doctors should be alert to the incidental opportunities for breaches of confidentiality and seek to minimize their role in unwittingly revealing sensitive information.

When confidentiality must or may be breached

The duty of confidence is not absolute. Sometimes, the law requires that clinicians must reveal private information about patients to others, even if they wish it were otherwise (Box 1.5). There are also circumstances in which a doctor has the discretion to share confidential information within defined terms. Such circumstances highlight the ethical tension between the rights of individuals and the public interest.

Aside from legal obligations, there are three broad categories of qualifications that exist in respect of the duty of confidentiality, namely:

These three categories are useful as a framework within which to think about the extent of the duty of confidentiality and they also require considerable ethical discretion in practice, particularly in relation to situations where sharing confidential information might be considered to be in the ‘public interest’. In England and Wales, there is legal guidance on what constitutes sufficient ‘public interest’ to justify sharing confidential information, which is derived from the case of W v. Egdell. In that case, the Court of Appeal held that only the ‘most compelling circumstances’ could justify a doctor acting contrary to the patient’s perceived interest in the absence of consent. The court stated that it would be in the public interest to share confidential information where:

Consent should be sought wherever possible, and disclosure on the basis of the ‘public interest’ should be a last resort. Each case must be weighed on its own individual merits and a clinician who chooses to disclose confidential information on the ground of ‘public interest’ must be prepared to justify his or her decision. Even where disclosure is justified, confidential information must be shared only with those who need to know.

If there is perceived public interest risk, does a doctor have a duty to warn? In some jurisdictions, there is a duty to warn but in England and Wales, there is no professional duty to warn others of potential risk. The judgement of W v. Egdell provides a justification for breaches of confidence in the public interest but it does not impose an obligation on clinicians to warn third parties about potential risks posed by their patients.