Mr. F is a 59-year-old taxi driver who has been admitted to hospital with severe iron-deficiency anemia. After his condition is stabilized by means of a blood transfusion, and an endoscopy is ordered, the attending physician tells Mr. F that he will “have a test” because “he must be bleeding from the bowel.” As he is being wheeled down the hall to the endoscopy suite, the physician calls out: “You have to have this test before you can go home.” The endoscopist arrives at the same time as Mr. F.
Ms. G is a 38-year-old mother of two young children. She is an outpatient at a mental health facility where she is finishing up a program for an addiction to painkillers. She is in the midst of a bitter custody battle with her former husband, who is insisting that she sign a consent form to release her health records to him for the purpose of the custody hearing. She is scared that her husband may try to use the information against her, and that she will lose her children. Nevertheless, her social worker has told her she needs to accept responsibility for her addiction and the only way to do that is to share all details of her treatment with her husband.
In the context of consent, “voluntariness” refers to a patient’s right to make treatment decisions and decisions about his or her personal information free of any undue influence. A patient’s freedom to decide can be impinged upon by internal factors arising from the patient’s condition or by external factors. External factors, which are the focus of this article, include the ability of others to exert control over a patient by force, coercion, or manipulation. Force involves the use of physical restraint or sedation to enable a treatment to be given. Coercion involves the use of explicit or implicit threats to ensure that a treatment is accepted (e.g., “If you don’t let us do these tests, then we will discharge you from the hospital!”). Manipulation involves the deliberate distortion or omission of information in an attempt to induce the patient to accept a treatment or make a certain decision (Faden and Beauchamp, 1986; Kuczewski and McCruden, 2001).
The requirement for voluntariness does not imply that clinicians should refrain from persuading patients to accept advice. Persuasion involves appealing to the patient’s reason in an attempt to help him or her understand and accept the merits of a recommendation (Kuczewski and McCruden, 2001). Although a clinician may attempt to persuade a patient to follow a particular course of action based on medical evidence and clinical judgement, the patient is free to accept or reject this advice.
Voluntariness is an ethical requirement of valid consent. It is grounded in several related concepts, including freedom, autonomy, and independence (Faden and Beauchamp, 1986). The goal of the consent process is to maximize the opportunity for decisions to be reached autonomously (Etchells et al., 1999). Clinicians are often faced with an inherent tension between their desire to respect and foster patient autonomy (focusing on the empowerment of the individual) and their a responsibility to act in a patient’s best interest (which some might call paternalism). A power imbalance will always exist in the clinician–patient relationship, to the extent that one party has more clinical information and expertise. However, clinicians must be mindful of the fine line between persuasion and coercion: the duty to provide sufficient information and advice to support a patient’s autonomous decision making, contrasted against allowing a patient’s actions to be substantially controlled by others.
In a presentation on legal and ethical dilemmas delivered to the Consent and Child Health Workshop in 1998, New Zealand’s Health and Disability Commissioner Ron Paterson stated that “[e]ven for a mature young person, clinicians must be alert to the possibility of coercion or undue influence, for example, by parents on religious matters.” (New Zealand Ministry of Health, 1998).
Voluntariness is a legal requirement of valid consent. In Beausoleil v. Sisters of Charity (1966), a young woman about to undergo spinal surgery repeatedly requested a general anesthetic and refused a spinal anesthetic. After the patient had been sedated, the anesthetist convinced her to have a spinal anesthetic. The patient was subsequently paralyzed as a result of the procedure and successfully sued the anesthetist. In testimony, a witness said that the patient “refused [the spinal anesthetic], but they continued to offer it to her; finally she became tired and said: ‘You do as you wish’ or something like that” (p. 76). The judge stated that the patient’s agreement to the spinal anesthetic was involuntary, because it rested on “words which denote defeat, exhaustion, and abandonment of the will power.” (p. 76).
In Ferguson v. Hamilton Civic Hospitals et al. (1983), a patient unsuccessfully sued for battery after undergoing an angiogram that resulted in quadriplegia. Although the suit was unsuccessful, the court was critical of the circumstances in which the consent was obtained and suggested “the informing of a patient should occur at an earlier time than when he is on the table immediately before undergoing the procedure” (p. 285). It has been suggested that obtaining consent just before a major procedure is problematic, because “the setting and the immediacy of the medical procedure militate against a patient being able to make a free or voluntary decision” (Picard and Robertson, 1996, p. 55).
The doctrine of undue influence was central to the Court’s decision in Re T (1992). In that case, a young pregnant woman’s refusal of a potentially life-saving blood product was found to be based on the undue influence of her mother, a Jehovah’s Witness. The Court differentiated between a patient seeking advice and assistance in reaching a decision about care, versus a decision that is freely given (p. 669).
The real question in each such case is, does the patient really mean what he says or is he merely saying it for a quiet life, to satisfy someone else or because the advice and persuasion to which he has been subjected is such that he can no longer think and decide for himself? In other words, is it a decision expressed in form only, not in reality?
The Court noted that both the strength of the patient’s will, and relationship with the persuading party, are central to a finding of undue influence.
In some common law jurisdictions, treatment may be given against an individual’s wishes only in rare circumstances, for instance, to protect public safety (as is the case with laws that relate to public health) or to render someone fit to stand trial for a criminal offence. For example, individuals with communicable diseases may be treated against their objection, as in the case of patients with tuberculosis who are non-compliant with treatment [cf. Ontario’s Health Protection and Promotion Act (1990)]. Many jurisdictions also permit individuals to be treated without consent in emergency situations where it is impossible to obtain the individual’s consent (or that of his or her substitute decision maker).
Most common law jurisdictions allow for the involuntary admission of patients to psychiatric facilities, provided they present a serious, significant, or immediate risk to themselves (the language varies among statutes) or others, or are unable to take care of themselves. However, there is some variation between jurisdictions as to whether consent for treatment related to the mental illness is required for involuntarily admitted patients (although the usual consent rules would continue to apply to other healthcare decisions). Because of the coercive nature of such circumstances, extra care should be taken in obtaining a valid consent to treatment from patients who have been admitted involuntarily.
Finally, voluntariness for certain medical procedures involving minors has more recently been the subject of both legal and ethical debate. Consent to treatment of minors poses additional challenges with respect to voluntariness, given a potentially broader power imbalance between the minor and the clinician, as well as the wish of some parents to make decisions on behalf of their children. This issue was considered in the Canadian case of Re Dueck (1999) and in the English case Re E (1993) each involving a 15-year-old boy of Jehovah’s Witness faith who refused a life-saving blood transfusion.
Voluntariness is an essential component of valid consent, and obtaining valid consent is generally a policy of professional bodies regulating clinicians. The UK’s General Medical Council created a standard for ensuring voluntary decision making (General Medical Council, 1998). For example, discussions with patients about informed consent should provide a balanced view of available options, as well as making clear any potential conflicts of interest. Patients should also understand their right to decline a proposed treatment. The UK’s Department of Health (2001) has noted that voluntary consent to treatment (or refusal of that treatment) requires an absence of pressure and undue influence on a patient and that pressure may come from clinicians, as well as from the patient’s family members. Clinicians are advised to be alert to this possibility and arrange to meet privately with patients so they are making their own care decisions.
The guidelines for consent to treatment established by the Association of Anaesthetists of Great Britain and Ireland (AAGBI) has been criticized for failing to require that a separate consent be obtained from patients undergoing anesthesia. This criticism rests in part on the fact that, in addition to having adopted a lower standard than some other jurisdictions, the present guidelines make no reference to voluntariness (White and Baldwin, 2003).
Psychiatric inpatients may be subject to explicit or implicit coercion even when their admission has been voluntary (Reed and Lewis, 1990; Rogers, 1993). However, even patients who require involuntary admission can be given some measure of control over their situation by being allowed to choose the method of restraint (Sheline and Nelson, 1993). An additional dilemma faces those working in forensic mental health, where the individual’s consent to be examined or detained may not be necessary and subsequent consent to treatment may not be sought; for example, in the case of court-ordered treatment to render the individual fit to stand trial (Fernie, 2005).
Institutionalization in non-psychiatric hospitals or long-term care facilities can also be coercive. Even simple instructions to patients (e.g., “Don’t get out of bed until after your breakfast”) can give the patient a sense of diminished control (Hewison, 1995). Interventions that enhance the ability of long-term residents to exert control result in a greater sense of well-being (Langer and Rodin, 1976). Further, many long-term care facilities have developed successful programs to reduce the use of restraints, in some instances as best practice while in others as a result of legislative change (Miles and Meyers, 1994).
Outpatients are less likely than inpatients to be subjected to force and coercion (Connelly and Campbell, 1987) but they may be susceptible to manipulation. Although we are unaware of any data on the incidence of manipulation, studies indicate that decisions can easily by influenced by the manner in which information is presented (Sutherland et al., 1991; Mazur and Hickham, 1994). It is possible for such manipulation to occur in clinical practice. A recent study examined voluntariness in the decisions of adolescents (Schachter et al., 2005).
Internal and external controlling factors can affect patients’ decisions about treatment. For example, a patient with metastatic prostate cancer and bone pain is subject to internal controlling factors. A symptom-free life without treatment is not possible, and the patient must make some decisions while suffering severe pain, at least until the pain is treated. These internal factors arise from the patient’s medical condition rather than from an external source, such as any action by the clinician. The clinician’s role is to minimize the potential controlling effect of these internal factors to the best of their ability. For example, the clinician can reduce the impact of acute pain on decision making by deferring non-urgent decisions until the pain has been treated.
External controlling factors may be related to the clinician, the healthcare setting or to other people such as family and friends. We will focus here on the clinician and the healthcare setting; however, problems can also arise when family, friends, or others exert excessive control.
In the few circumstances in which it is acceptable for clinicians to use force, the least restrictive technique possible should be preferred. For example, if a patient is at immediate risk of harming himself or herself, simple observation in a supervised environment, rather than physical restraint or sedation, may be sufficient. Similarly, an elderly patient with delirium who is falling out of bed can be moved to a mattress on the floor so that the risk of falling is eliminated without physical restraint.
In psychiatric and long-term care institutions, a patient advocate can help the clinician to ensure that consent is not coerced. Clinicians can also take steps to minimize the coercive nature of institutions by enhancing the patient’s sense of choice. Useful strategies might include encouraging patients to involve their family or friends in decisions, encouraging them to ask questions, and promoting their awareness of the choices available to them (e.g., “I would like you to have a test tomorrow. Do you want to talk about this with someone you are close to? Is there any reason to delay?”).
Clinicians can also take steps to minimize the potential for manipulation. Firstly, because patients can be manipulated when the information they receive is incomplete, clinicians should ensure that adequate information has been disclosed to the patient. Secondly, manipulation can occur when information is presented in a biased fashion. A useful strategy is to ask patients to review information in their own words. Also, if a patient who accepts therapy because of its potential benefits continues to accept it when its potential risks are emphasized, then the clinician can be more confident that this decision has not been manipulated (Redelmeier et al., 1993).
The endoscopist asks Mr. F to review the reasons for having the test in his own words. Mr. F says that he has “no choice but to have the test” because “my doctor won’t let me leave until I do.” Mr. F expresses that he is self-employed and cannot afford to be off work any longer. Because the endoscopy is not an emergency, the endoscopist calls the attending physician, who agrees that the test should be delayed. After a further discussion that afternoon, Mr. F consents to the endoscopy, which is performed the next morning before Mr. F’s next shift.
In a team meeting that same day, the discussion focuses on Ms. G and her custody battle. The social worker had not previously been aware that Ms. G was divorced, nor that the release of information to the husband could have drastic consequences. In a follow-up meeting with Ms. G, the social worker has an opportunity to discuss her recovery as well as her right to choose how and with whom her information is shared. Ms. G now understands that, in spite of her husband’s threats, nobody at the health facility will share information without her consent or other legal authority to disclose as permitted or required by law. Ms. G and her husband ultimately share joint custody of their children.
An earlier version of this chapter has appeared: Etchells, E., Sharpe, G., Dykeman, M. J., Meslin, E. M., and Singer, P. A. (1996). Voluntariness. CMAJ 155: 1083–6.