Right to Refuse Clinically Indicated Treatment

Freedom from controlling interference of others denotes that the autonomous patient has a right to refuse clinically indicated medical treatment (or intervention) even if such refusal is to his/her clinical detriment. This principle stating that ‘A person is not to be treated as unable to make a decision merely because he makes an unwise decision’ is set out in the MCA 2005 (section 1(4)). Equally, common law is clear in protecting competent patients’ right to decide irrespective of how ‘rational, irrational, unknown or even non-existent’ their rationale may be (Re T (Adult: Refusal of Treatment) [1992] 3 W.L.R. 782 at 786, CA; Airedale NHS Trust v. Bland [1993] 1 All E.R. 821 at 860). Essentially, this right guarantees patients’ choice to accept or refuse treatment, but is also linked to a competent adult’s responsibility for his/her own decisions and the consequences of his/her choices.

While a competent adult does not require his doctor to agree that he refuses treatment, an individual should not expect to receive treatment on demand. ‘Autonomy and the right to self determination do not entitle the patient to insist on receiving a particular medical treatment regardless of the nature of the treatment.’ (R (On the Application of Oliver Leslie Burke) vs The General Medical Council [2005] EWCA Civ 1003). Recent legal developments confirm that a patient cannot demand a particular treatment; however, healthcare professionals must take into account the patient’s wishes when making treatment decisions (Aintree University NHS Trust v James [2013] EWCA Civ 65).

Shift from Doctors’ Duties to Patients’ Rights

Historically, the legal standard of care was determined by the Bolam test, which measured quality of treatment, including information disclosed with the patient’s consent, in relation to practice recognised by other doctors (Bolam v Friern Hospital Management Committee [1957]2 All ER 118). The Bolam test states that a doctor who acted in accordance with practice accepted at the time as proper by a ‘responsible body of medical opinion’ (skilled in the particular form of treatment in question) was not guilty of negligence, placing such practice merely as a different technique. The Bolam test was subsequently modified by Bolitho, which added a requirement to sustain logical analysis to the Bolam standard (Bolitho v Hackney Health Authority [1998] AC 232).

Currently, the Bolam standard is regarded as a reflection of an out-of-date patriarchal doctor–patient relationship and has been replaced by an approach centred on patients’ autonomy. Accordingly, while previously consent-related information disclosure focussed on doctors’ duties (expressed by the courts by what a ‘reasonable doctor’ would reveal), current emphasis has moved beyond doctors’ duties and shifted towards patients’ rights. Consequently, a doctor is required to disclose what a ‘reasonable patient’ would want to know (Sidaway v Board of Governors of the Bethlem Royal Hospital [1985] AC 871, Pearce v United Bristol Healthcare NHS Trust [1998] EWCA Civ 865 and Chester v Afshar [2005] 1 AC 134).

Patients’ Right to Receive All ‘Material Information’

Respect for patients’ autonomy determines that a patient has the right to know all the facts that may affect his/her decision. This principle, which determines the validity of consent, was asserted in Montgomery (Montgomery v Lanarkshire Health Board [2015] UKSC11). In law, a doctor is under a duty to take reasonable care to ensure that the patient is aware of any ‘material risks’ involved in any recommended treatment, and of any reasonable alternative treatments. The ‘test of materiality’ is whether ‘in the circumstances of the particular case, a reasonable person in the patient’s position would be likely to attach significance to the risk, or the doctor is or should reasonably be aware that the particular patient would be likely to attach significance to it’ ((Sidaway), p. 889, para 87; (Montgomery)).

These developments in law are reflected in the guidelines for professional practice. One of the documents currently in force (Good Medical Practice, General Medical Council, 2013) states, under the heading ‘The duties of a doctor registered with the General Medical Council’: ‘Work in partnership with patients. Listen to, and respond to, their concerns and preferences. Give patients the information they want or need in a way they can understand. Respect patients’ right to reach decisions with you about their treatment and care’ (para 78).

GMC Consent Guidance: patients and doctors making decisions together (2008) highlights an individualised approach to information disclosure: ‘The amount of information about risk that [a doctor] should share with patients will depend on the individual patient and what they want or need to know. [Doctors’] discussions with patients should focus on their individual situation and the risk to them’ (para 8). ‘[Doctors] should do [their] best to understand the patient’s views and preferences about any proposed investigation or treatment, and the adverse outcomes they are most concerned about. [The clinician] must not make assumptions about a patient’s understanding of risk or the importance they attach to different outcomes’ (para 31).

Additionally, a doctor must appreciate that, from a legal standpoint, risk is not about ‘percentages’ and that he/she is obliged to discuss even numerically very low risks, if deemed ‘material’ to the patient (Chester v Afshar [2005] 1 AC 134). Accordingly, GMC guidelines (2008) make it a professional obligation that: ‘[a doctor] should tell patients if an investigation or treatment might result in a serious adverse outcome, even if the likelihood is very small’ (para 32).

Significance of a given risk is likely to reflect a variety of factors besides magnitude, including the nature of the risk, the effect on the patient’s life, the importance to the patient of perceived treatment benefits, and any alternatives and risk involved in those alternatives. Assessment of the risk is therefore fact-sensitive and sensitive to the characteristics of the patient (Sidaway). Doctors’ advisory role involves a dialogue, the aim of which is to ensure that the patient understands the seriousness of his or her condition, the anticipated benefits and risks of the proposed treatment and any alternative treatment options. The aim of this discussion is to ensure that all information given to the patient is clear and comprehensive so that the patient is able to make an informed decision.

Withholding information from the patient. There are only three exceptions when a doctor may withhold information from a patient: firstly, when the patient does not wish to receive it, secondly, when a doctor reasonably considers that the disclosure would be seriously detrimental to a patient’s health (causing a patient’s upset is not sufficient), lastly, in an emergency situation rendering the patient unconscious or unable to make a decision.

The second exception relies on a doctor’s clinical judgment to assess the likelihood of a harmful effect of information disclosure on the patient. This reason for withholding material information has been established in common law so that ‘Even if the risk is material, the doctor will not be liable if upon a reasonable assessment of his patient’s condition he takes the view that a warning would be detrimental to his patient’s health’ (Sidaway: 889–90). GMC guidelines (2008) emphasise that being detrimental in this context ‘means more than that the patient might become upset or decide to refuse treatment’ (para 16).

The almost inevitable consequence derived from these considerations is the need to provide patients, particularly in an increasingly litigious society, with large amounts of information. However, information verges on infinite and it is not possible to offer all information that exists. Besides, large amounts of information may be confusing and detrimental to the patient and one must be respectful of the patient’s wishes regarding the amount of detail he/she wishes to know. Essentially it is suggested that truly autonomous patients should decide what information they need (O’Neill, 2003) and that they may choose to access more detailed information via a variety of sources such as patients’ information leaflets, guides and the Internet. Similarly, Beauchamp highlights that ‘A fundamental obligation exists to ensure that patients have the right to choose and the right to accept or decline information. Forced information and forced choice are inconsistent with this obligation’ (2009: 107).