Introduction

This chapter will explore the element of consent that is probably most familiar to readers: information. The term ‘informed consent’ is commonplace (and sometimes afforded legal meaning that it does not have in the UK). Even if someone is not well-versed in the finer details of consent, it is likely that the vast majority of people understand that for consent to be meaningful there must be some sort of exchange of information. It is rare, in either our professional or personal lives, that we are content to agree blindly to a proposal without first finding out more and perhaps exploring the options in greater detail. It is a natural human instinct to seek information to help in making choices and taking decisions. The questions relating to sharing information have formed a significant part of the common law (or cases) that exist about consent and also the guidance on consent that is published by professional bodies such as the General Medical Council (GMC) and Royal Colleges. An appreciation of the role of information is central both to a sound understanding of the concept of consent and its effective enactment in the clinical environment.

This chapter of the book will explore, in detail and with clinical examples, what it means to seek and obtain consent that is properly informed. The chapter aims to move beyond the somewhat mechanistic notion of ‘information transfer’ to consider why information is considered an important element of meaningful consent, what constitutes information, who might be responsible for sharing information with a patient (or potential patient) and how the requirement that consent should be informed can be best managed in the day-to-day demands of a busy clinical practice.

The opportunity to write is always an opportunity to learn. As a mixed authorial team, we have benefited from sharing our perspectives on, and experiences of, consent. This sort of productive and stimulating cross-disciplinary learning might have been anticipated. What was perhaps less predictable is the effect of revisiting, reviewing and reconsidering that most fundamental of concepts: consent. Readers will be reassured to know that the terrain was, we believed, familiar to and well trodden by us when we commenced this book.

We had reason to be confident: we knew the key cases, professional guidance and policy documents on consent thoroughly and we had spent many hours considering the conceptual ways in which the ethics literature has discussed autonomy, self-determination and the moral value of consent. The clinical enactment of consent in daily medical practice was also familiar, and we had views from both primary and secondary care in our team. Yet our confidence was tempered with wariness. The consequence of knowing the literature well and having a breadth of clinical experience was that we understood that there is a vast array of resources for those seeking guidance on consent. What was it that we could bring to the subject that was novel and informative?

Introduction

This chapter will deal with that element of clinical consent termed, most commonly, capacity. The philosophical underpinnings of the term will be considered, along with the practical implications of evaluating a person’s capacity. The law relating to capacity varies around the world, and reference will be made to differing judicial approaches and interpretations.

What, then, is capacity in a clinical context? In fact, it is difficult to separate a general view of clinical capacity from that in other areas: it is simply a person’s ability to consider something and to make a decision about it. In the domain of consent, it is held to be the ability to give consent or to refuse treatment. In other chapters, we consider issues that are substantively different: whether consent is coerced or uninformed for example. Each of these elements of consent assumes that the person of whom consent is sought is able to understand the nature and implications of the decision.

Introduction

For the seeking of consent to be a meaningful process, there must be a meaningful choice. In other words, consent must be voluntary. At first sight, this is a statement unlikely to surprise, and readers might be wondering why it warrants a chapter dedicated to voluntariness. However, agreeing to the importance of voluntariness in theory and ensuring its enactment in clinical practice are two distinct processes. It is also noticeable that in most of the literature relating to consent, attention to the subject of voluntariness is rare and, where it happens, discussions are usually focused on consent to participate in research. The vast majority of those reading this book will have little difficulty in nodding sagely in agreement with the statement that consent must be voluntary. Yet this chapter will argue that, in the daily practice of medicine, voluntariness can quickly be overlooked or compromised.

On the nature of coercion

Overt coercion in healthcare is rare. Most clinicians will not need persuading that coercion has no place in an effective therapeutic relationship. On closer examination, however, there are several factors that perhaps mean we should not dismiss coercion as an irrelevance without further thought.

Introduction

Seeking and obtaining consent is commonly represented as a single act. The patient presents, and the clinician explains what he or she wishes to do and seeks the patient’s agreement to implement investigations and treatment. The paperwork is signed, the forms sent off and consent is complete. This routine conceptualization of consent does not capture a significant component of proper consent, namely that it is continuing or ongoing. Merely because someone once agreed to, or indeed refused, an investigation, procedure or treatment, it does not mean that consent endures indefinitely. Yet like the requirement that consent be voluntary, the value of ensuring that consent is continuing is often overlooked in the literature. Where it is discussed in detail, it is most likely to be in the context of research where a participant’s ongoing willingness to be part of a trial or study is often built into the protocol and emphasized as part of the process of obtaining ethical approval. This chapter will consider the concept of continuing consent in the context of clinical practice rather than biomedical research, and will discuss some of the issues and challenges that can arise.

Continuing consent and the process of healthcare

As discussions in earlier chapters have stressed, healthcare is increasingly systematized. The majority of patients will have contact with a number of healthcare professionals. The journey through the healthcare system commonly begins in primary care. It may take several visits to a GP practice before referrals are made and those primary care consultations are likely to involve history taking, investigations and some treatment. If a referral is considered to be appropriate, this may happen some time after the patient originally presented and is likely to be at an institution that is new to the patient. When the patient attends for his or her referral appointment, the process of history taking, examinations and investigations resume leading perhaps to surgery, treatment or procedures. Further referrals may follow, sometimes accompanied by requests to participate in teaching, educational activities, service evaluation, audits or research. The patient may encounter many people along the way: GPs, nurses, hospital doctors, phlebotomists, radiographers, physiotherapists, physician assistants, anaesthetists, ward clerks, occupational therapists, auxiliary staff, clinical and non-clinical managers, healthcare students, speech and language therapists, receptionists, secretaries and pharmacists may all contribute to an individual’s care. Healthcare is rarely, if ever, a one-off transaction between an individual practitioner and patient. It is almost always a process over a period of time involving many people.

Introducing consent

The process of seeking the consent of a patient to a medical procedure is, arguably, one of the most important skills a doctor, or indeed any clinician, should learn. In fact, the very idea that doctors may institute diagnostic or treatment processes of any sort without a patient’s consent is utterly counter-intuitive to the modern practice of medicine.

It was not always thus, and even now it can be reliably assumed that consent is still not sought and gained appropriately in every clinical encounter. To say that it should be sought and gained in this manner elevates the value of consent to a high level. It can be instructive to ask oneself why such a value might be held to be the case. The answer to this question lies in the philosophical underpinning of clinical consent, which sits within a notion of personal autonomy, and respect for autonomous decision-making. When we say that autonomous decision-making should be respected, we are endowing individuals with the ability to make their own decisions about their individual futures. It is a philosophical axiom that this should be so, with a long history attached.