Mental capacity and valid consent

Mental capacity and valid consent

ETHICAL AND LEGAL Mental capacity and valid consent Information patients require prior to giving consent • Details of the diagnosis, and prognosis; ...

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ETHICAL AND LEGAL

Mental capacity and valid consent

Information patients require prior to giving consent • Details of the diagnosis, and prognosis; and the likely prognosis if the condition is left untreated • Uncertainties about the diagnosis, including options for further investigation prior to treatment • Options for treatment or management of the condition, including the option of not to treat • The purpose of a proposed investigation or treatment • Explanation of the likely benefits and probabilities of success • Discussion of any serious or frequently occurring risks • How and when the patient’s condition any any side effects will be monitored • The name of the doctor with overall responsibility for treatment • A reminder that patients can change their minds, or seek second opinions • Whether doctors-in-training or students will be involved

Matthew Hotopf Vanessa Raymont

Doctors investigate, treat and research their patients. Whether the patient agrees to accept such procedures will depend on a number of contextual issues, for example: • the quality of his or her relationship with the doctor • previous experiences of medical care • media coverage of medical issues • cultural and religious background • the influence of his or her relatives. Until recently in the UK, the only person who could consent to a medical procedure for an adult was the patient themselves. However, the recent Mental Capacity Act (2005) allows substitute decision-making by a nominated individual.1 The same ethical and legal principles apply to the process of obtaining consent whatever the procedure, even though the process of obtaining consent varies considerably – the ‘consenting’ of patients before major surgery tends to be more explicit than that which takes place when a GP prescribes an antibiotic. This contribution explores the principles of valid consent and mental capacity as they apply in the UK. As these are universal concepts in medicine, the discussion is not restricted to patients with mental illness, where in many jurisdictions separate legal processes apply. Discussion is limited to adults, as children are covered by separate legal provision.

(Adapted from GMC guidelines)

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coercive practices. Much of the remainder of this contribution discusses mental capacity; however, it is worth considering the first two components of the consent process. Provision of information Clearly, for a patient to make a decision he or she needs to have sufficient information on which to base it. One of the key legal precedents with regards to giving patients sufficient information is the case of Sidaway v. Board of Governors of Royal Bethlem Hospital (1985).2 This involved a 71-year-old woman who brought action against her surgeon for performing a laminectomy. Following the operation she suffered a partial paralysis. Her complaint was that she had been given inadequate information in the consent process. The House of Lords ruled that the doctor would not be considered negligent if his or her practice conformed to that of a responsible body of medical opinion (the Bolam test). Hence what patients are told is to some extent dependent on what medical opinion says they should be told. Current guidance available to doctors is more cautious than the Bolam test. The Department of Health suggests that doctors should inform patients of any ‘material’ or ‘significant’ risk in the proposed treatment,3 a view expanded in the General Medical Council’s guidelines, which suggest that the patient’s individual priorities should be examined.4 A simplified version of the GMC’s list of information that patients may need to know is shown in Figure 1. The GMC and Department of Health both accept that under rare circumstances information may be withheld from the patient if ‘serious harm’ would come from disclosing the information. ‘Serious harm’ does not mean simply upsetting the patient. The patient’s understanding of such information may be optimized by the appropriate use of format and the context in which it is given.

Valid consent In order for consent to be valid, three conditions must apply: • the patient must be suitably informed • the consent must be given voluntarily • the patient must have capacity to make that decision. Central to these ideas is the concept of autonomy. Respect for patients’ autonomy is a central plank of medical ethics, and recognition of patient autonomy is an important safeguard against

Matthew Hotopf is Professor of General Hospital Psychiatry at King’s College London, Institute of Psychiatry, London, UK. He qualified from St Bartholomew’s Hospital, and trained in psychiatry at the Maudsley Hospital and in epidemiology at the London School of Hygiene and Tropical Medicine. Vanessa Raymont trained in psychiatry at St George’s Hospital, London, UK. She worked as a researcher at the Institute of Psychiatry, London, from 1999 to 2003, and obtained an MSc in cognitive neuropsychology from University College London. She is currently employed as lead researcher on a long-term study of head-injured Vietnam veterans at the National Institutes of Health, USA.

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Voluntariness For a patient to give valid consent, he or she should not be unduly pressurized. In some circumstances (e.g. with psychiatric inpa18

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ETHICAL AND LEGAL

tients or prisoners), the potential for coercion may be obvious. Live-organ donation (whereby a healthy individual undergoes potentially dangerous surgery to benefit a family member with end-stage renal or liver disease) is another area where concerns that the donor is acting voluntarily are obvious. Family members may pressurize patients to refuse treatment, and perhaps the most compelling argument against euthanasia is the potential for overt or covert pressure to be placed on terminally ill individuals by both doctors and relatives.5 Voluntariness is to some extent ensured by the use of consent procedures, whereby the giving of consent is made explicit – the very act of asking a patient to sign a consent form implies choice. Providing good patient information can also help; for example, research ethics committees insist that patient information sheets include phrases which state that participation is voluntary; that the patient is free to withdraw consent at any time; and that his or her medical care will not be affected by his or her refusing or withdrawing consent. For individual patients, there are some circumstances (e.g. live-organ donation) in which explicitly considering voluntariness is part of good practice – this might involve an assessment and information-giving by an independent doctor.

be reversed: the impairments that cause it can be temporary or permanent. Other general principles of the law are shown in Figure 2. Although all doctors should be able to assess capacity, it is a particularly prominent part of the work of old age psychiatrists, specialists in learning disability, and liaison psychiatrists. The decisions usually relate to whether or not a patient can make a decision regarding a physical treatment or placement in nursing homes; occasionally doctors are asked by solicitors whether a patient has capacity to make a will. There is currently a debate about the treatment of mental disorders, and whether they should be treated within the same legal framework as physical disorders. In the UK there has been separate mental health legislation (e.g. the Mental Health Act 19839), but it has been argued that this is discriminatory and the same tests should be used to determine whether a patient can be treated against his will whether the disorder is mental or physical. Proposed mental health legislation has largely ignored this point of view.

How to assess mental capacity If asked by a surgeon or physician to determine whether a patient lacks capacity to consent to a treatment, it is important for the psychiatrist to carry out a detailed assessment, especially if the treatment proposed is major and irreversible. The first phase of this should be to gather information: it is necessary to establish what the proposed treatment is, its side effects or risks, and the likely benefits. Information from the clinical team proposing treatment should be gathered. • Why do they think the individual lacks capacity? • How thoroughly have they discussed the procedure with the patient? • Have they endeavoured to present the information in a suitable way for the patient?

Mental capacity In 2005, the Mental Capacity Act was passed in England and Wales. This allows substitute decision-making by someone the patient has nominated via lasting power of attorney or that has been appointed by a court. In emergency situations, capacity continues to be dealt with under common law, which is determined not by Act of Parliament, but by rulings made in individual cases which establish legal precedents (case law). Previous reports suggested that for a patient to lack capacity he or she should have a mental disability which acts as a diagnostic threshold.6–8 Mental disability does not equate to a mental disorder: it is a broader concept that could include strong temporary emotions such as anger, or severe symptoms such as pain. The Mental Capacity Act refers to ‘an impairment of or disturbance in the functioning of brain or mind’. The Act goes on to state that this impairment or disturbance causes the person to be unable to make a decision for her/himself if s/he is unable to: • understand the information relevant to the decision • retain the information relevant to the decision • use the information relevant to the decision as part of the process of making the decision • communicate the decision (whether by talking, using sign language or any other means). Capacity is situation-specific: a patient who lacks capacity for one decision may well have capacity for others. Mental incapacity can also

Refusal of treatment as a protest A 64-year-old man who had suffered from type 2 diabetes for 15 years had severe peripheral vascular disease in one leg. The foot had become infected, and after 4 weeks in hospital and two courses of intravenous antibiotics it was thought necessary to amputate the foot. The patient ‘put his foot down’ and refused to consent to this. The physicians and surgeons argued that if the foot was not removed he might die as the infection was spreading and there were signs of systemic infection. The patient was referred to a liaison psychiatrist, who thought that apart from mild depressive symptoms there was no mental illness. The psychiatrist explored the patient’s understanding of the procedure and the consequences of his refusal. The patient gave an embittered account of his illness and his frustration with the medical team. He complained that he was never seen by the same doctor; that his treatment was not adequately discussed; and that the surgeon had been patronizing and assumed automatically that he would consent to the operation. After exploring these frustrations and liaising with the medical team, it was possible to re-establish good doctor–patient relationships, and the patient consented to the procedure.

Principles of capacity • Patients are entitled to make unwise decisions, and doing so does not mean that they lack capacity • Patients should be presumed to have capacity • Someone can be said to lack capacity only if ‘all practicable steps’ have been taken to help the person make the decision’ 2

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• If the patient is not a native English speaker, have they used an interpreter? As in other psychiatric assessments, informants are important; has the family noticed any changes which might indicate an underlying impairment that might affect decision-making? Do they have doubts about the patient’s ability to give consent? It may also be helpful to contact other professionals, such as the GP or district nurse, who may have a longer acquaintance with the patient and be able to place matters in context.

Assessing best interests • Might the patient have capacity to make the decision in the future? Could the decision be delayed until then? • If the patient does not have capacity, it is important to ensure that he or she participates as fully as possible in the decisionmaking process • Is there any indication of the patient’s past wishes, such as an advance directive, or views expressed to relatives or other professionals? • Whare are the views of the patient’s next of kin, close relatives, carers, donees of lasting power of attorney (in Incapacity Bill) and other interested parties? • Are there any alternative treatments (or procedures) which would bring about the desired effect in a way which was more acceptable?

Clinical condition The assessment of the patient must first take into account his or her clinical condition. It is often helpful to do the assessment with a senior member of the clinical team proposing treatment. In some circumstances the patient is very frail or ill and it is necessary to limit the assessment to very specific areas, such as his or her understanding of the current predicament, the treatment proposed, and how he or she has reached a decision. The emphasis of the interview will depend on the nature of any likely impairments that affect capacity. The most common reason patients lack capacity is due to cognitive impairment, hence a cognitive assessment is vital. In frail patients this may be limited in scope and can to some extent be combined with providing information on the proposed treatment and determining whether the patient can understand and retain this information. Assessments of mental capacity in patients with cognitive impairment are relatively straightforward, but it is particularly important to remember that capacity is situation-specific. A patient with dementia may not be in a position to consent to a life-saving operation, but may have full capacity to decide where he or she wants to live after recovering from surgery. Patients who have self-harmed and refuse medical treatment pose a particularly difficult problem, especially where there is no clear psychiatric disorder. Refusal of medical treatment may be a reflection of the continued emotional state (e.g. anger) that led to the episode of self-harm. If the consequences of refusal of medical care are serious or life-threatening, and the patient is in an angry and impulsive state of mind, it seems reasonable to state that capacity is lacking, and to treat against the patient’s wishes. These situations are difficult to judge for several reasons: often the treatment has to be given quickly, and there is little time for deliberation; the disturbance of brain or mind is less clearly defined than when cognitive impairment or psychosis are present, and may simply be strong emotions; or the reason the patient lacks capacity is not due to any inability to retain or understand the information, but to the decision-making processes used. It is easy to tell if a patient has remembered information but much harder to determine whether he or she has been able to use that information to make the decision. It should be noted that the definition of capacity implies an appreciation of the effects of a decision, but does not necessarily require the same beliefs as others. Another common scenario is a patient who refuses treatment as a means of protest against the medical team. Figure 3 describes a typical vignette.

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a patient who lacks capacity should be made on the basis of what is in his or her best interests, and this will depend on numerous contextual factors, described in Figure 4. When proposing major and potentially risky treatment it is worth getting a second opinion from an independent and senior clinician. The hospital legal department should be consulted, and when in doubt it is worth consulting medical defence organizations. 

REFERENCES 1 Mental Capacity Act 2005. London: HMSO, 2005. 2 Sidaway v. Board of Governors of Royal Bethlem Hospital. All ER 118, 1985. 3 Department of Health. Reference guide to consent for examination or treatment. London: Department of Health, 2001. 4 General Medical Council. Seeking patients’ consent: the ethical considerations. London: GMC, 1998. 5 Hendin H. Seduced by death: doctors, patients, and the Dutch cure. New York: Norton, 1997. 6 Law Commission. Mental incapacity. Report 231. London: HMSO, 1995. 7 Lord Chancellor. Making decisions: the Government’s proposals for making decisions on behalf of mentally incapacitated adults. Cm 4465. London: Stationery Office, 1999. 8 Lord Chancellor’s Department. Who decides? Making decisions on behalf of mentall incapacitated adults. Cm 3803. London: Stationery Office, 1997. 9 The Mental Health Act. London: HMSO, 1983.

Documentation and consultation Assessments of capacity should always be carefully documented. The clinician making the assessment should write in detail his or her reasons for believing the patient lacks capacity, and the efforts that have been made to present information in a way that the patient is likely to understand. The decision whether to treat

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