Introduction
The emergence of consent procedures as part of medical care has a long history with philosophical, religious and social roots as well as legal components. The literary definition of consent includes the following ideas: âto agree; to give permission; to accede; to complyâ.1
These are all suggestive of a submissive process â one in which the person allows something to be done to him- or herself. In order for consent to operate within acceptable boundaries, there are broad moral principles which must be considered. Most ethicists consider that these are respect for autonomy, beneficence and justice.2 Within these concepts, human rights play an important role. Such rights are based on a respect for individuals, and this respect will take the form of âconcern for their welfare and respect for their wishesâ.3 The consent process deals with knowing about treatment, accepting it and also the right to refuse it. These rights and obligations have become important legal issues which have been explored through the courts of North America and Western Europe. In some jurisdictions their emergence has imposed an obligation upon carers to provide information. However, in England and Wales this obligation arises from a duty of care rather than from any right on the part of patients to know about their treatment. The standards by which information disclosure will be judged have been defined by the courts in England and Wales as needing to be comparable to those of other practitioners in the same field of therapeutics.4,5
Respect for autonomy
Autonomy requires liberty and the capacity to act. It has been defined as âpersonal freedom to make moral choicesâ.6
The right to make decisions concerning oneself is clearly part of the democratic process, and is cherished by most people who live in such societies. In the seventeenth and eighteenth centuries philosophical liberalism recognised the capacity for free decision as a hallmark of humans, and the right to exercise that capacity as a key human right.7 Clearly such choices can be limited by Government-inspired constraints, particularly if they would have adverse effects on others. This is as true in the area of healthcare as in any other area. For example, in sections 37 and 38 of the Public Health (Control of Diseases) Act 1984, provision is made for the enforced removal and detention of people with respiratory tuberculosis who refuse treatment. These sections do not allow people to be forced to participate in a treatment programme, but they do remove them from society so as to prevent the infection of others. In contrast, respect for the right of autonomous patients to refuse treatment which could prolong their lives, but which has no direct impact on the lives of others, is accepted as morally, ethically and legally acceptable. Such rights to refuse treatment are best recognised among Jehovahâs Witnesses, who may refuse blood transfusions, even at the risk of their own death. However, such rights have been carefully monitored in recent years. If there is a suspicion that someone may have been unduly influenced in reaching their decision, then doctors can apply to the courts to overrule it.8 However, the courts view minors from a different standpoint. For example, M was a gravely ill 15-year-old who was âoverwhelmed by her circumstancesâ,9 and the courts decided that her refusal to undergo a heart transplant could be overridden. In contrast, minors can make decisions about contraception independent of the views of their parents.10
As these cases show, society will place restrictions on the choices that are made by individuals. This is particularly so when the decision could harm others or use up scarce resources (e.g. interferon therapy in cases of multiple sclerosis).11 However, the right to make choices also puts an onus on those who hold information about investigations and treatments to ensure that adequate information is transmitted to the individual to enable them to have the capacity to make the choice. This disclosure must contain within it the type of information which will allow the patient sufficient understanding to enable them to make a truly informed choice. Once these objectives have been achieved, the patient is no longer powerless and they have the capacity to both give and withhold consent. The obligations of the individual information holder may need to be defined by society so that they are uniform and consistent. With regard to patient autonomy, this type of approach may restore the sense of freedom and self-determination that is so often undermined by illness.
It is at this level that it is important to distinguish between two forms of consent. In the harm avoidance model of informed consent,12 physicians agree that they must obtain consent because procedures have become much more complex, invasive and thus more dangerous for patients than they were 30 years ago. Most physicians have traditionally adopted the harm avoidance model of consent as standard practice. Here there is a disclosure of risks of treatment, but little attention is given to ensuring that the patient understands their consequences. This form of consent:
Harm avoidance assumes that the patient has the capacity to make a decision between alternatives, but does not always call upon them to do so, as some information is withheld. The basis for withholding the information can be found in the developmental history of consent, and is now encapsulated in the following view:
In the case of Sidaway, Browne-Wilkinson J recognised that:
In contrast, the autonomy-enhancing model of informed consent12 discloses in detail all of the treatments available to the patient, including their risks and benefits. Its ultimate purpose is as follows:
Current practice in the USA is to follow an autonomy-enhancing model. In England and Wales, harm avoidance consent has been the model followed until recent times. Support for this approach came from Sidaway v Board of Governors of the Bethlehem Royal Hospital and Maudsley Hospital and Others.15 In this judgement it was held that a simple and general explanation of the nature of an operation was sufficient for the patient to give legally valid consent. Whether this was ethically valid depends on oneâs view of patient autonomy. More detailed information could cause distress to a patient at a time when he or she would be least able to evaluate it because of pain and anxiety. It was also recognised that a patient cannot complain of any lack of information if they have not asked for it.15
In 1985 this case confirmed that:
The problem lies with how someone can reach a balanced and rational decision when they are in possession of an incomplete set of information. The selection and subsequent withholding of information fits in with the philosophy of âDoctor knows bestâ. Such an approach is paternalistic, and is characterised by dealing with patients âin an authoritarian but benevolent way (e.g. by supplying all their needs but regulating their conduct)â.6 It focuses on the patient as a sick body in need of help, rather ...