The right to refuse treatment is embodied in the standard medical procedure of obtaining a patient’s informed consent before treatment.[44] The origins of the medical concept of ‘informed consent’ are to be found in a complex arrangement of cultural inheritance involving moral, ethical and legal considerations. The moral element is concerned with notions of individual autonomy and a person’s right to determine what is allowed to be done to his/her own body by a doctor. The ethical part involves the relationship between an individual and a professional expert who has been consulted by the individual, and concerns the expectations of duty and trust that surround such a relationship. The legal aspect is concerned with the actual contractual arrangements that have been entered into by the two parties.[45]
The binding together of these separate concepts into a formally stated principle didn’t occur until after World War II. The trials of Nazi war criminals had revealed many atrocities in the name of experimental science, most of which were performed by qualified doctors, and the Nuremberg Code was adopted by the United Nations General Assembly in 1946 as an international standard to ensure these atrocities were never repeated. The first Principle of the Code states that ‘[t]he voluntary consent of the human subject is absolutely essential’[46] when conducting medical experiments. Although this Code is considered by many to lack the necessary detail for enforcement, it is the seminal document for international law in this area and has been subsequently used as a basis for other international agreements of a similar nature.
From these beginnings ‘informed consent’ has been developed into a fully fledged doctrine to guide the delivery of professional medical services. Although the procedures appear simple, there are hidden complexities, concerning the notion of ‘informed’, and the notion of ‘consent’.
To satisfy the ‘informed’ half of the doctrine, the medical practitioner is required to tell the patient the reason why the treatment is necessary and the expected outcome, together with a description of any possible side-effects and, if failure is a possibility, the likelihood of failure and its consequences. Alternative treatments should also be canvassed.
Although this might seem straightforward, doctors frequently complain about problems they face in properly implementing this procedure. From the doctor’s point of view the problem is deciding how much detail is necessary to satisfy a particular patient. Some patients would rather not be told any more than is strictly necessary, preferring to trust in the wisdom of their doctor. Others want all the information they can get.
The problem for the doctors is knowing which sort of patient they are dealing with. Doctors argue that giving too much information to patients who don’t want it does them harm by increasing their anxiety. Doctors also complain that they are too busy to waste time educating patients who want to know everything. But neither of these arguments is sufficient when doctors have to defend themselves against litigation for having failed to satisfy the procedure.
Clinical trials of psychiatric drugs are particularly problematic in regard to informed consent. People who have been diagnosed with serious mental disorders such as schizophrenia are usually assumed to be incapable of making rational decisions. This assumption is the basis for the involuntary treatment that many of them receive. However, pharmaceutical companies are constantly developing new products which have to be tested by clinical trials before they are released onto the market. These conditions produce a paradoxical situation whereby people who are deemed by medical/legal procedures to be unfit to make decisions in regard to their need for treatment in the first instance are, all the same, frequently assumed to be rational enough to give their informed consent to participate in medical experiments.
The notion of ‘consent’ doesn’t generally cause so much anxiety for the medical profession as does the notion of ‘informed’. Even so, ‘consent’ still has many areas of contention. The main problem area concerns people who are considered unfit to give their consent. When a medical patient is unconscious and needs urgent medical attention it is normal practice to assume ‘the notion of presumed consent, namely that it is a safe assumption that patients would want whatever is medically indicated to minimise or prevent injury, stop the progression of disease, sustain life, relieve pain and suffering, and so forth’.[47]
This presumption of consent can extend into more controversial areas. These include proxy consent, which is the form of consent given by a third party, usually a relative on behalf of children and elderly people, and ‘the doctrine of parens patriae, which provides that the state has the duty to care for those individuals who are not able to do so themselves’.[48] The right to give involuntary treatment to mental patients, without their informed consent, is often drawn from the doctrine of parens patriae.[49] However, routine involuntary treatment is not found in other branches of medicine, and its practice in psychiatry still necessitates a certain amount of duplicity in the interpretation of human rights, despite these legal devices.
In summary, the overall psychiatric tactic is simply to justify involuntary treatment by assuming that a person who resists treatment lacks sufficient insight to comprehend the need for treatment. This assumption clears the way to assert that the person would assent to treatment if the need were properly understood, and that the person’s ‘right to treatment’ would be violated without the imposition of involuntary treatment. In this way the medical model can satisfy the perceived need to control certain people while at the same time appearing to respect their human rights.
But there are at least two classes of people who are regularly diagnosed with schizophrenia and forced into treatment when they clearly do not have medical problems. These are people undergoing spiritual/mystical emergencies and people who have problems of living arising from social or occupational dysfunctions. When these types of people attempt to resist forced treatment it is not because they lack 'insight' into their supposed mental illness. Rather, it is because drugs are simply inappropriate as a method of dealing with their problems. When 'lack of insight' and the 'right to treatment' are invoked to justify overriding their wishes these concepts turn into expressions of extreme cynicism.
The response from supporters of the medical model to these claims is usually to deny that such people exist. The medical model views everyone diagnosed with schizophrenia, by definition, as being mentally diseased. If a person with a diagnosis claims to have a healthy mind this is seen as a symptom of the disease. This simple logic of denial has been central to the consensus building around the structure of the medical model and has added greatly to its strength. But despite this structural strength it is actually built on very unstable ground. This is because it is fairly easy to demonstrate that another cultural consensus exists, outside the medical model, which agrees that mystics and people with social problems actually do exist. And that their deviations from normal are not necessarily due to mental disease.
These anomalies are even apparent to some psychiatrists. There have been a number of dissident psychiatrists who have rejected the medical explanation of schizophrenic symptoms and have adopted alternative non-medical interpretations instead. These alternatives are usually based on assumptions of either spiritual/mystical emergency or social alienation as the cause. Needless to say, the few psychiatrists who pursue these non-medical explanations are viewed with distrust by their peers and are professionally marginalised. But their writings are often very attractive to interested lay people who are sceptical about the medical explanation. They also supply credible evidence to support a person's right to refuse medical treatment when it seems inappropriate.
Next: 5. Non-Medical Models: schizophrenia as a spiritual/mystical emergency
[44] John A. Robertson, ‘Informed consent: a study of decisionmaking in psychiatry’, p. 960.
[45] V. Dharmananda, Informed Consent to Medical Treatment: processes, practices and beliefs, pp. 1–2.
[46] The Nuremberg Code, reproduced in Carolyn Faulder, Whose Body Is It? The Troubling Issue of Informed Consent, p. 132.
[47] Stephen Wear, Informed Consent, p. 135.
[48] George J. Annas et al., Informed Consent to Human Experimentation: the subject’s dilemma, p. 154.
[49] H. Bursztajn et al., ‘Parens patriae considerations in the commitment process’, Psychiatric Quarterly, pp. 165–81.