Ethical Underpinnings and Justification of Consent
Chapter 4 Consent is … the cutting edge of the patient autonomy movement.1 Consent is much more complex than theorists originally believed it to be.2 There is an obvious legal justification for consent – unconsented-to touching is an assault, as discussed in Chapter 3 – but the purpose of consent is not just to protect doctors from litigious patients. To set the context for further analysis of the consent model, it is worth exploring the ethical justifications for consent. The question has been asked why consent is such an important requirement in health care, whereas it is not in other areas of human activity.3 Wear says, for example, that statistics regarding divorce are not routinely trotted out as part of the marriage ceremony.4 Similarly, a salesman is not obliged to ask if the purchaser really wants the product, and a formal declaration of consent is not required prior to purchase of the product. One argument for the necessity of consent in health care is that illness itself restricts freedom and consent helps to restore the sense of freedom and self-determination that is undermined by illness.5 In other words, consent is necessary not simply as an antidote to medical paternalism, but in a broader sense for enhancement of well-being and protection of the patient’s freedom. This argument could itself be tricky, in the sense that potentially it unintentionally provides justification for medical paternalism – if an ill person is weakened and unable to take control, then the clinician should assist him/her by making decisions. Nevertheless, the concept of freedom in relation to consent is an important one, for the importance of consent is that it facilitates the freedom to make choices that reflect the individual’s own values, beliefs and life experiences. No matter how well-intentioned a clinician may be, he/she is not usually in a position to share the same values, attitudes and beliefs as the patient. In modern societies with advanced technology, depersonalisation and multiculturalism, there is increased heterogeneity of ideas, attitudes and cultures, which means that we are as individuals perhaps less likely to share attitudes, beliefs and cultures with each other. This, by the way, is another argument for preferring the subjective application of the prudent patient test to the objective application. Attitudes, beliefs and culture are key ingredients in formulating personal goals, such as those relating to one’s family, professional or social life. Personal goals are an important, but often underestimated, determinant of decisions or choices made by patients. For example, the goal to attend a family wedding later in the year may be important enough to make a patient opt for conservative rather than surgical treatment. Sometimes trade-offs are critical elements in the decision-making process. A pregnant woman who needs an urgent surgical operation for cervical or ovarian cancer may wish to defer the operation until after she has given birth to the baby, rather than have the operation immediately and lose the pregnancy, with the full understanding that delaying the operation could adversely affect the outcome of treatment. Schwartz and Bergus state that: Although decision researchers always emphasize the importance of goals in decision making, goals are rarely considered explicitly because they are unique to each decision maker, and it is often assumed that only the decision maker has good insight into his own goals. The incorporation of goals into medical decisions, although amenable to systematization, thus remains in large part an art practiced by physicians who excel in communication with patients in the clinical other encounter.6 (emphasis mine)7 Related to goals are constraints – social, economic or other factors which limit patients’ decision-making. An example would be the patient who is constrained from accepting blood transfusion because of his/her religion. In the consent transaction, it is important for doctors to explore their patients’ goals and for patients to make their constraints known to the doctor. As will be discussed in Chapter 9, this mutually rewarding exercise could help to determine what tailored and relevant information the doctor should provide (as opposed to a blanket full disclosure of information or what Manson and O’Neill refer to as ‘explicit and specific consent’8). Apart from the traditional anti-paternalism justification of consent, changes in the nature of health-care systems necessitate mechanisms for protecting the patient’s right of self-determination. The delivery of medicine is increasingly following an assembly-line pattern; almost gone are the days of the good old-fashioned doctor who knew the entire family. Almost gone also is the hospital generalist who had a holistic view of the patient’s problems. These days, the patient is likely to be treated by a team of sub-specialists and a variety of health professionals. O’Neill, quoting Rothman,9 refers to them as ‘strangers by the bedside.10 O’Neill suggests that these developments in delivery of medical care break the traditional bonds of trust between doctors and patients.11 Trust aside, there is a potential threat to consent in this situation. If the authority gradient between patient and doctor was steep in the traditional setting, the gradient is even steeper when the patient has to negotiate not with just one doctor but with an establishment of highly skilled professionals. Without adequate protection, the right to self-determination could readily be compromised by these conditions. A model which has the rights of the particular patient as its cardinal point is more likely to secure this protection than a model that relies on standards set for or by the medical establishment and the objective man on the Clapham omnibus. Another justification for consent is utilitarian: consent helps protect patients from treatment that they consider harmful or undesirable. Alternatively, it enables them to choose the treatment option that they consider beneficial or preferable. In this role, as guardian of their own health rather than passive submissive recipient of medical care, they are more likely to have better health outcomes – clinicians recognise that giving patients information and involving them in their own care is associated with better health outcomes.12 Indeed, the concept of an ‘expert patient’13 has evolved in recent times. The utilitarian standpoint is by definition dependent on context – so long as utility (happiness, satisfaction and other perceived benefits) is maximised and disutility (distress, dissatisfaction and so on) is minimised, the criterion for utilitarian justification is met. Utilitarian ethics will not, therefore, always explain the basis of consent. When the underlying reason for providing information and seeking to gain a patient’s agreement to treatment is simply the desire for a better health outcome (rather than to enable the patient to make an informed decision), then that goal is a different one from protection of the right to self-determination, and may even be diametrically opposite. Indeed, this approach has beneficence rather than self-determination as its ethical principle. It is arguable that when a physician obtains a patient’s agreement to treatment solely for the purpose of enhancing therapeutic benefits, what the physician obtains from the patient is assent, not consent. The most acclaimed ethical basis for consent can be found in the principle of respect for persons: treating persons as ends in themselves and not solely as means or instruments for other ends. Underlying this principle is the concept of a person’s capacity for, and right to, self-determination. It is this principle that gets the most emphasis in contemporary discussions of consent.14 As Manson and O’Neill put it, ‘[t]he reason most commonly given for the expansion, entrenchment and elaboration of informed consent requirements is that they are needed to secure respect for individual autonomy’.15 The British Medical Association extols this principle: Seeking consent is a moral requirement, and the BMA believes that respect for others and their rights lies at the heart of this issue. Society emphasises the value and dignity of the individual. Competent adults have both an ethical and a legal right to self-determination and to respect for their autonomy. This entails their having choice about what happens to their bodies.16 As discussed in Chapter 2, rights thinking is on the ascendancy and underlies the push for protection of patient self-determination. However, it is feared that too much emphasis on self-determination in the consent process may result in replacement of paternalism ‘with a distant and impersonal relationship of strangers negotiating rights and duties’.17 The American College of Obstetricians and Gynaecologists (ACOG) asserts that if persons are to be respected and their well-being promoted, consent must be seen as expressing a fuller notion of relationship.18 This interpretation of consent would be welcomed by those who advocate a duty-led approach, emphasising duty rather than rights as the cardinal ethic. Rights and duties may be described as opposite sides of a coin. If rights are heads and duties tails, then for champions of the duty approach the coin should always be tails up. The idea that consent is not an end in itself but a means to responsible participation by patients in their own care and a means to a mutually rewarding relationship between clinician and patient is one that needs to be more widely promoted among health-care providers19 and acknowledged by champions of the individual self-determination movement (whose adversarial approach has been criticised by O’Neill for being counter-productive20). All too often clinicians consider consent primarily as protection against litigation or equate consent with the signing of a form.21 Clements suggests that we should be talking more about choice than consent. By this he means that the focus should be on the patient’s expressed and informed choice, not on the doctor’s preoccupation with avoidance of litigation.22 He advocates dialogue between doctor and patient but sees preoccupation with consent formalities as an obstruction to this goal.23 We will return, in Chapter 5, to Clements’ proposition. Meanwhile, it is reiterated that the self-determination-protection goal is not mere choice but authentic choice – and scholars have questioned whether the law concerns itself with authentic choice (if in fact it has the wherewithal to do so in any case).24 In Chapter 2, the concept of self-determination was discussed and in the following chapter the evolution of the law of consent as a means of protecting the patient’s right to self-determination was reviewed. For many years it was taken that the law of consent was so intricately bound to autonomy (however defined) that contemplating consent without autonomy was equivalent to speaking of Hamlet without the Prince of Denmark. In recent times, however, academic commentators have questioned this assumption.25 The first salvo appears to have been fired by Taylor, who declared that ‘the conventional view that the ethical foundation of informed consent is concern for autonomy is mistaken’.26 He advanced the proposition that ‘the ethical foundation of informed consent is really concern for human well-being’.27 His position is based on the premise that to undermine a patient’s autonomy, the doctor must have the intention to exert control over the patient; if this intention is not present, the patient’s autonomy has not been undermined: A person, then, can fail to give his informed consent to a medical procedure and yet not suffer from any diminution in his autonomy with respect to his decision to undergo it. If concern for patient autonomy is the ethical foundation for requiring that a person give his informed consent to his medical treatment, then healthcare providers who negligently fail to secure informed consent from their patients would not be morally culpable for this, because this failure would not result in their patients’ autonomy being compromised. But to hold that a healthcare provider who negligently fails to secure a patient’s informed consent is not morally culpable for such failure is highly counterintuitive. Since this is so, it appears that concern for autonomy is not the ethical foundation for the doctrine of informed consent. It seems that if a healthcare provider such as Grant fails to inform his patients of the risks associated with their medical treatment, he will wrong them because this puts their well-being at risk. Thus, it appears that the true ethical basis for the doctrine of informed consent is not patient autonomy, but patient well-being.28 The point has been made in Chapter 2 that we are concerned here not with notions of how autonomy may or not be compromised but with the patient’s right to self-determination. The starting point for the property approach advocated in this book is the patient’s rights, not the doctor’s intentions. Whatever the intention of the doctor may or may not be, the patient has a right to make an informed decision about his/her treatment, and the law should protect that right. As legal protection of self-determination is the focus of my proposition, further exploration of Taylor’s view of the ethical basis of consent is not pursued. Attention is turned to the conception of autonomy applied by the courts. Examining case law, McLean concluded that there is inconsistency regarding which conception of autonomy actually grounds the legal regulation of consent.29
Ethical Underpinnings and Justification of Consent
Freedom to Pursue Personal Goals
Protection from ‘Strangers’
Utilitarian Justification
Respect for Persons; Self-determination
Consent and Self-determination