Abstract

Introduction
In order to give legally recognized consent to, or refusal of, medical treatment or research, there are several necessary conditions. These are that: (i) the patient is given enough information on which to base a decision; (ii) the patient possesses the mental capacity to make the choice; and (iii) the patient is not coerced into making a particular decision. Anyone over the age of 18 years is usually presumed to possess sufficient mental capacity to consent or refuse, unless there is a prima facie reason to think otherwise, in which case capacity to make a particular decision should be formally tested. Anyone found to lack such mental capacity after such a test can be forcibly treated in their ‘best interests’ or according to their hypothetical wishes as if competent, judged by a surrogate. However, while most liberal jurisdictions adopt these same necessary and sufficient conditions, they sometimes disagree over how mental capacity should be conceptualized and assessed. Furthermore, in any test, it is difficult universally to capture all the norms we would expect of practical reasoning. In light of such norms, some autonomous patients are erroneously determined as non-competent and forcibly treated against their will, while some non-competent patients are left untreated by erroneously respecting an autonomous refusal. Of particular contention is how conceptions of capacity can include the roles of belief and evaluation in forming preferences for particular decisions, whilst upholding liberal principles by testing the process of decision-making and not the substance of them for fear of introducing unwanted hard paternalism (Craigie, 2011). There is plenty of discussion of so-called hard cases in psychiatry which clearly elucidate these problems. It is also worth examining how they affect assessments of capacity in other, non-psychiatric settings, for example, during serious public health emergencies emerging in countries with different cultural beliefs and values, assuming the notion of consent to treatment or research still holds in a serious public health emergency. The Ebola outbreak of 2014–16 dramatically illustrates these dilemmas.
Two conceptions of mental capacity
In England and Wales, mental capacity is defined in law briefly as (i) being able to understand the information, (ii) retaining it for long enough to make the decision, (iii) weighing it in the balance, and (iv) communicating a choice (Mental Capacity Act, Department of Health, 2005). Now a statutory conception, it was previously defined in common law by the case of Re C in 1994 (1 WLR 290; [1994] 1 All ER 819). Mental health concerns that may affect decision-making are assessed separately under specific legislation, Mental Health Act (Department of Health, 2007), which may permit doctors to forcibly treat a patient only for a diagnosed mental disorder but not otherwise if they are deemed mentally competent to refuse under the Mental Capacity Act.
By contrast, in many of the West African States as in North America, for example, the legal test for mental capacity is used to include decision-making both in psychiatry and elsewhere in healthcare to avoid apparently discriminating against those with mental health problems (Capacity Assessment Office, 2005). The test assesses whether a patient is able to: (i) understand relevant information, (ii) appreciate the consequences of the situation and (iii) reason about treatment (South Africa: Medical Protection, 2012).
Comparing both of the above approaches to basic norms of practical reasoning, we can agree that a person must have the relevant true beliefs and not have relevant false beliefs. This norm is often assumed to approximate the requirement that a patient understand the medical facts relevant to their disorder and treatment options (Craigie, 2011). However, in some cases, patients may hold relevant false beliefs at the same time as understanding the medical information provided, thereby pulling apart the two tests of capacity and introducing opposing assessments of when patients can lawfully be forcibly treated, which could have dramatic and unsettling implications for medical responders to a serious epidemic.
Understanding vs belief
As well as requiring the patient to understand the medical information, the original judgement in the common-law English judgement of Re C (1994), the resulting test for mental capacity included the requirement that a patient must also believe the medical information. Soon afterwards, the Law Commission removed the latter requirement (Law Commission, 1995). The distinction is often not recognized in work establishing norms of practical reasoning, yet goes beyond seeing the relevance of the medical facts to one’s own situation. Indeed, healthcare professionals’ interpretations of what their patients have learned during consultation can be seriously in error when they do not consider both understanding and belief. In theories of pedagogy, it is accepted that students may understand ideas without believing them, especially when they are covering controversial issues (Smith and Siegel, 2004). In modern medicine, patients may understand medical information at the same time as believing traditional cultural and religious approaches to health (which conflict with it). During the Ebola outbreak, beliefs which differed from the orthodox Western opinion were deemed to be misconceptions often resulting from rumour and misunderstanding (Wigmore, 2015). For example, on-going issues that arose from the start of the outbreak in Sierra Leone continued to hamper the Western response effort. For example, a prevalent rumour in Sierra Leone told of a chief, annoyed at having lost the election, having sent a witch plane to his opponents which caused a sickness named ‘Ebola’. Although this might have been dismissed, there is a deep-seated political tension between communities and their chiefs, which can be traced back to colonial times. Another example was that Americans had tested bioweapons on monkeys in Kenema, but the monkeys had escaped, which brought a sickness now called ‘Ebola’ (Wigmore, 2015). In standard healthcare, we have typically failed to recognize the need to investigate beliefs as well as their understandings as part of the debate over tests for mental capacity. Instead, after dedicated anthropological study, efforts were made to change these traditional beliefs and behaviours by community engagement and mobilization (CLEA and SMAC, 2015). These anthropological studies continue as intractable traditions and contrary views emerge, especially in relation to vaccination trials sometime after the end of the outbreak.
Appreciation as informed evaluation
Based on their original work, Appelbaum and Roth (1982) outlined four legal standards: (i) evidencing a choice; (ii) factual understanding of the issues; (iii) rational manipulation of information; and (iv) appreciation of the nature of the situation. They claimed that an appreciation of the nature of a situation was the strictest standard. Generally speaking, it is interpreted as the ability of people to apply factual understanding to their own situation. Appelbaum and Grisso (1995) later divided this concept into a lack of insight or awareness of one’s (psychiatric) illness and the inability to appreciate the risks and benefits of proposed treatment. Lack of appreciation is measured in relation to a patently false belief by the California Scale of Appreciation (Saks et al., 2002). These are beliefs that violate the laws of nature, are extremely improbable beliefs, or beliefs that distort facts. By introducing such evaluative standards in the test for mental capacity, substantive values are to be imposed on what beliefs are regarded as rational, and not only procedural principles which govern decision-making, given a person’s beliefs, however bizarre they might be. If this approach is broadly appropriate, it should be applied to all treatment decisions rather than just those in psychiatry, which leaves open the possibility that it could be used to justify overriding treatment refusals (Craigie, 2013).
Refusals on the grounds of religious belief that are potentially harmful are often legally accepted, and are based on liberal principles of religious tolerance. People’s religious commitments are often foundational and represent a core part of their identity, such as a Jehovah’s Witness refusing a potentially lifesaving blood transfusion. However, these beliefs are not regarded as being of pathological origin, unlike beliefs thought to be caused by a psychiatric condition. However, there is no framework for distinguishing pathological from authentic preference to reliably distinguish between relevant and apparently false beliefs (which ipso facto render a person non-competent) and those which are accepted (Craigie, 2011).
Conclusion
In light of the above difficulties in establishing which relevant false beliefs should be tolerated and which are pathological in origin and should be included in assessment of capacity to justify forcible treatment, we should strive to clarify the role of appreciation in conceptions and tests of mental capacity, as well as clarify the rationale behind the extensive efforts to change cultural and perhaps traditional religious beliefs relevant to people’s decisions about medical treatment and research, especially under the difficult circumstances of a serious public health emergency such as we saw with Ebola. When there is genuine epistemic uncertainty about emerging diseases and when new treatments are rapidly subject to development and evaluated by using scientific methods which are already alien to some populations, persuasion is itself borne of paternalism.
Footnotes
Editor’s Choice
April’s Issue of the journal develops the important role of collaboration in research with Angeliki Kerasidou’s case for sharing results of genomics research with the ethics committees which review them, followed by an account by Louise Bezundeihout of relational responsibilities of scientists, and by a proposal for designing research to facilitate approval of ethics in research (Donald Borrett, Heather Sampson, and Ann Cavoukian).
Finally, Stuart Nicholls provides a commentary on the recent revisions to the US Common Rule, concluding that there is still much work to be done before it can be wholeheartedly accepted by the research ethics community.
