THE CHANGING NATURE OF CONSENT ANDREW TRATHEN Prim Dent J. 2015;4(1):30-34

Lacks,1 was published in 2010, and brought attention to her contribution.

ABSTRACT Consent is a foundational principle of medical and dental ethics. The importance of the concept has changed over time and it is now viewed as more important than it has ever been, both within the profession and by wider society. This article looks at the nature of consent historically, the changes it has undergone, and some of the contemporary challenges in this area. The philosophical basis of consent is considered, looking at two lines of thought relating to autonomy and prevention of harm. The difficulty and appropriateness of providing ‘fullyinformed’ consent is then considered along with some of the modern problems relating to consumerist culture, and the social changes that have caused them. By looking at consent from a social and philosophical standpoint, we can broaden our thinking to give context to the day-to-day practicalities of obtaining consent in practice. These practicalities are addressed in subsequent articles within this issue of the Primary Dental Journal.

AUTHOR

Andrew Trathen BDS, MJDF Wellcome Clinical Research Fellow, Dental Institute, King’s College London

KEY WORDS Consent, Autonomy, Medical Ethics, Consumerism

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Medicine has come a long way since 1951, in part thanks to HeLa cells. The progress has not been restricted to the scientific though; we have moved forward ethically. The doctors of Henrietta’s time saw no problem with their actions, but today the idea of taking tissue from a person without a comprehensive process to obtain consent is unthinkable. Following the Alder Hey report in 2001, the Human Tissue Act 2004 enshrined the importance of consent in UK law, an attempt to move on from what some perceived as generations of ‘cultural baggage’ of seeing consent as an optional afterthought.2, 3 We continue to be vigilant of any threats to this value.4

Introduction

The decline of paternalism

In 1951, the first immortal human cells were successfully cultured in a lab. Given an appropriate medium, they would replicate approximately every 24 hours and did not die. Named HeLa cells, samples from the lineage have since been transported to labs across the globe, and are responsible for vast amounts of ongoing research into HIV, cancer, gene mapping and toxicology to name just a few. Jonas Salk used them extensively to develop a polio vaccine in 1952, which he made freely available to combat the frightening disease, refusing any patents on his discovery. The good that has come from these cells, which were taken from a patient named Henrietta Lacks during a biopsy, is immeasurable.

Although in many cases a failure to obtain consent is done for selfish reasons, perhaps financial gain or career progression, it is sometimes done with good, beneficent intentions. In the past, medical professionals believed that they knew what is best for their patients, a trait often strengthened within the medical professional culture. ‘Doctors knows best’ was a view which in many ways was socially endorsed – Parsons ‘sick role’5 exempted an ill person from their usual social duties, but at the same time demanded cooperation with medical professionals.

Henrietta was a poor, black, tobacco farmer from Virginia, who had cervical cancer, and died some months later. At no point was she asked if her cells could be used in this way and neither her, nor her family benefitted from her non-consensual participation in medical research. The world was not even sure of her name until a book, The Immortal Life of Henrietta

If a patient might refuse what was clearly in their best interest, then better to avoid their involvement. To do otherwise would compromise the beneficent duty of the doctor, and so paternalism was not merely seen as justified, but an integral part of effective medical care.

‘Conceal most things from the patient… Give necessary orders with cheerfulness and serenity… revealing nothing of the patient’s future or present condition.’ 6 Hippocrates

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But society changes. Paternalistic behaviour by clinicians in the past may well have genuinely been aimed at helping the patient in the best way possible, but it now seems terribly arrogant to think that anyone could know what is best for the patient other than the patient themselves. We can see that, even into the 1980s, there were still people who felt that paternalism was a valid strategy for treating patients. Weiss7 tries to promote a ‘modernised’ version of paternalism, where patient values are seen as one among many things the physician must consider in the patient’s best interest.

‘The guiding principle behind modern paternalism remains that the physician decides what is best for the patient and tries to follow that course of action. ‘If the patient will do better believing he is in control, the physician should encourage this belief and indirectly facilitate the right choice of action.’ Although even at that time this view was summarily dismissed as a failure to protect human rights,8 the fact that ideas like this were still considered debatable now seems quite shocking. Debates on medical paternalism today focus more on fringe situations, figuring out what ‘counts’ as paternalism, and those cases where patients may lack the ability to truly give their consent. Paternalism as policy, in our culture, is no longer present. Why has society moved away from the model of paternalistic medicine? Why do we follow a more patient-centric model, one that emphasises above all else the autonomy of the patient and the right of people to make their own choices?

Philosophical foundations of consent

Figure 1: Ethics has progressed as well as science – we can better the Hippocratic notion of consent

that there are significant differences between them (research consent is often more robust than that obtained for care). The primary difference is that the outcome from a care intervention is focused upon the consenting individual, whereas the outcome from research will be more generalised. Despite this difference, at their core they are both based upon a common normative ethical framework where consent is foundational. A number of principles have been used to defend the importance of consent.6 Two are of particular importance to a practising clinician’s dental setting: autonomy and prevention of harm. Autonomy Autonomy, literally ‘self-rule’, is the ability of a person to make decisions about their own lives independently and free from coercion. In modern western societies, autonomy is often considered as one of the most important elements of our morality; the right to live your own life is deeply embedded in our thinking. Some of the most prominent philosophers to defend the importance of autonomy include Immanuel Kant and John Stuart Mill — thinkers who proposed fundamentally different accounts of the basis of morality, but both arriving at a similar conclusion in regards to the importance of autonomy.

Consent is important in both clinical and research settings, though one can argue

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‘Over himself, over his own body and mind, the individual is sovereign.’ 9 JS Mill

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‘If only rational beings can be ends in themselves, that is not because they have reason, but because they have freedom. Reason is merely a means.’ 10 Immanuel Kant Although the idea of autonomy as a conceptual basis for consent is not without its critics, in our day-to-day practice it can be useful to consider consent as a safeguard for this principle of self-rule. Consent can be seen as a manifestation of our respect for a person’s autonomy. From the earliest days of the dental profession, dentists have felt most comfortable treating ‘the mouth’. It was seen as a weak point, a fragile barrier between a person and their environment.11 It was perceived as an independent entity and the focus of dentists’ attention. This paradigm has only begun to change relatively recently in the history of the profession and it no longer seems correct that we can isolate the mouth, or indeed the patient themselves, from their environment and the context in which we are helping them.12, 13

It nowadays feels intuitive that our interventions are capable of affecting more than just our patients’ physical bodies. In fact it can be argued that it is incoherent to perceive our physical selves as isolated and independent from the other aspects of our existence. Values, beliefs and our worldview are intimately associated with our physical presence and sense of selfidentity. While western medicine has been in many ways spectacularly successful at maintaining and repairing our bodies from a mechanistic perspective, it seems absurd to assume that healthcare professionals will always be able to understand, let alone improve, upon these other spheres of our lives.14 It is for this reason that in a clinical setting a person’s right to self-rule, to govern their own direction and to make their own decisions is seen, almost axiomatically, as a good which we must preserve. Healthcare professionals are uniquely positioned to impinge upon this selfgovernance and thus autonomy and consent have become cornerstones of medical ethics.

Prevention of harm The need to protect patients from harm is another principle that underpins the consent process. Contemporary thinking in dentistry moves further in the direction of minimal intervention.15, 16 This has arisen largely due to our better understanding of the iatrogenic burden that our profession places on patients when we intervene. Even quite simple interventions carry some potential for harm, damaging pulp or losing enamel, but for more invasive procedures the harm that we can do as a dentist is very significant. Irretrievable clinical decisions made in the surgery can have huge impacts from which the patient will not be able to escape. The standards to which we must hold ourselves in obtaining their consent must therefore be appropriately high.

‘…one’s body is irreplaceable and inescapable. If my architect doesn’t listen to me and this results in a house I do not like, I can always move. I cannot move from my body.’ 17 Dworkin, 1988 Our shift to minimal intervention dentistry, with the aim of reducing iatrogenic harms, is then quite commensurate with the social movement towards the increasing importance of autonomy.

The reality of fully-informed consent The consent process is not simply a case of telling the patient everything that the dentist knows about the treatment. A patient cannot be given the full extent of knowledge that their dentist has. Full disclosure of all possible information would be too much for any normal person to process in a short amount of time.

Figure 2: Respect for autonomous decisions is integral to the consent process

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Figure 3: The move to a consumer paradigm comes from both the profession and wider society

The legal situation in England and Wales has a bearing on this issue. The ‘doctrine of informed consent’, which requires that all necessary and relevant information is required in order for a patient to give consent, is not recognised. Instead, the patient must understand ‘in broad terms the nature of the procedure which is intended’, what is known as ‘sufficient consent ’.18 From a philosophical perspective, an interesting question for us to ask is: ‘what takes precedence in our duty to achieve fully informed consent – full disclosure or comprehension?’ If we have thoroughly explained a procedure and all associated risks, have we successfully discharged our duty? What if a person has not comprehended what we have said? In reality, on the question of whether disclosure or comprehension is more important, we tend to take a middle path approach, presenting information in a way which can be best understood by a patient and that will achieve the best level of comprehension possible. On occasions, we might have to deal with a situation where a patient comes from a culture that believes stating a risk increases the likelihood of it happening. More commonly, a person could be from an older generation who feels far more comfortable with the traditional paternalistic relationship, and could potentially become distressed if forced to make decisions they feel should be made by their doctor. It is these types of difficulties that have driven a change in emphasis over the last few decades, away from full disclosure and more towards comprehension.19 Our ability to obtain consent that is as fully informed as possible is always context dependant. The relationship between consent and comprehension has received some academic attention, but an appropriate metric that could standardise these kinds of tests has yet to be discovered.20 Every person has different capacities for understanding, as well as differing desires to be informed of all possible consequences. For this reason, we must be careful when relying on written forms

and falling into the trap of thinking ‘I’ve covered myself’. A more ethical (and equally legally sound) approach is to ensure we have built a good relationship with our patient that gives us the chance to understand their particular consent needs and tailor our processes appropriately.

The contemporary issue of consumerism To talk about consumer culture brings to mind some clichéd image of smiling people laden with shopping bags, but consumerism has relevance for dentistry in a number of important ways. The first relates to changes in the structure and philosophy of the NHS which have occurred over the last 20 years or more. The second comes from the way in which the profession has always promoted consumption of their services and dentistry as a business. The final way is how patients perceive themselves, receiving services in much the same way as they might from any organisation in the retail or service sectors. Seven competing ‘clusters’ of professionals have been identified that perceive professionalism quite differently.21 One of the emerging groups that has growing power is the ‘entrepreneurial’ cluster. Members of this group promote the value of business principles and treating patients as consumers. By anchoring professionalism in business principles, business ethics and viewing patients as consumers of a service, they feel they are best placed to tackle issues of quality, safety and increasing costs. The ‘product’ they offer will be better, and given at a more competitive price. This ideology can be a powerful driver for change. Although the social complexity research that

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identified these clusters was focussed primarily on the American medical profession, it seems uncontroversial to suggest great similarity with a UK dental profession that is becoming increasingly ‘entrepreneurial’. Superficially, a change in the dentistpatient relationship towards consumerism seems to fit with the increased importance we now place on patient-centricity, autonomy and choice. These days, many patients have unprecedented access to information before they set foot in a surgery (albeit information that can be hard to make sense of from a lay perspective), and can thus be more demanding of the type and quality of care they receive. This can be seen as a good thing. However, when taken to the extreme22 patients viewing themselves as consumers can demand treatments which the dentist may feel is inappropriate; for example insisting on a prescription for antibiotics. It can be legitimately argued that this might constitute an abuse of autonomy or that patient autonomy has limits. The change to patients perceiving themselves as consumers of healthcare has some profound philosophical implications for the nature of the relationship between operator and patient. The identity labels that people choose relate to the values relevant in a given context23 and the effect that they can have on people’s identity has been thought to lead to changes in behaviour.24 If the consumerist model is adopted by both patient and dentist alike, an important question is: ‘what happens to the traditional fiduciary or trust-based relationship that existed between the doctor and patient?’ Business ethics are not the same as medical ethics and it is probably

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not appropriate to consider healthcare as a tradable commodity. If both parties begin to behave as though it is, then it seems quite plausible that the traditional pillars of professional trust could be undermined, and integrity pressured by marketing techniques and economic forces. The problem has been put quite starkly by Welie: ‘It would be immoral for dentists to continue professing engagement in the social contract when in fact they are operating as business people’.25 The argument here is that business people do not have to be unethical and can undoubtedly provide a fine service; but if professionalism means putting the needs of the patient first, then it is disingenuous to claim that dentists are professionals when it is business in truth that comes first. It is a tough argument to defeat.

Conclusion Consent has evolved; away from being a minor issue for the paternalistic practitioner to consider, through to creating an obligation of full disclosure, to where we

REFERENCES 1

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Skloot R. The Immortal Life of Henrietta Lacks. London: Pan Macmillan; 2010. Richardson R. The organ retention scandal. Chief Medical Officer’s Summit –11th January 2001: Evidence Documentation. London: Department of Health. p. 5-18. Richardson R. Narratives of compound loss: Parents’ stories from the organ retention scandal. Narrative research in health and illness: Wiley-Blackwell; 2004. Kottow M. The battering of informed consent. J Med Ethics. 2004;30(6):565-9. Parsons T. The social system. Glencoe, IL: Free Press; 1951. Eyal N. Informed consent. The Stanford encyclopedia of philosophy (Fall 2012 Edition). Available at: http://plato.stanford.edu/archives /fall2012/entries/informedconsent/. Accessed: 16/09/14 Weiss GB. Paternalism modernised.

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are currently: expected to work with the context specific needs of the patient to provide all relevant information for them to make an informed choice, ensuring that they can retain and process the information given to them. The principles of consumerism seem to be playing a significant part in this change, despite the potential dangers of commoditising dental care. The strategy that we might need to employ in order to achieve consent is ask fundamental questions of what it is that we are trying to accomplish as both healthcare professionals and dentists. Where once we were technicians fixing teeth through our mechanistic view of the mouth, we now are expected to take a more holistic approach and embark on conversations with patients that extend far beyond our traditional remit. Asking questions and advising about lifestyle, exercise habits, smoking habits and what the patient eats26 are not questions and advice a lay person may associate with the role of the dentist. But the common

Journal of Medical Ethics. 1985;11:184-7. Matthews E. Can paternalism be modernised? J Med Ethics. 1986;12(3):133-5. Mill JS. On Liberty. UK: Penguin; 1859. Guyer P. Kant, Immanuel. Routledge encyclopedia of philosophy. London: Routledge; 1998, 2004. Available at: www.rep.routledge.com/article/DB 047SECT9. Accessed 21/09/14. Nettleton S. Power, pain and dentistry: Open University Press.; 1992. Cohen SM, Fiske J, Newton JT. Behavioural dentistry: The impact of dental anxiety on daily living. Br Dent J. 2000;189(7):385-90. Allen PF. Assessment of oral health related quality of life. Health and quality of life outcomes. 2003;1:40. Heng HH. The conflict between complex systems and reductionism. JAMA. 2008;300(13):1580-1. Mount GJ. A new paradigm for

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risk factor approach,27 combined with our duty to inform the patients of the systemic way in which they can preserve their health, pushes us to nudge the boundaries of our jurisdictional territory. Perhaps this is merely a symptom of the artificial distinction made between dentistry and the rest of healthcare; a distinction that came about more as a historical quirk than anything fundamentally unique about ‘the mouth’ relative to the rest of the body, or the person. Consent is more important than it has ever been in healthcare, with a strong philosophical foundation and an ongoing social movement to respect the rights of individuals and their bodily integrity. Every patient we meet is a unique person, and consent must be obtained with sensitivity to their particular needs. The only way that this can be achieved is by building mutual, respectful relationships between the patient and dental team to allow us to understand these needs.

operative dentistry. Aust Dent J. 2007;52(4):264-70; quiz 342. Featherstone JD, Domejean S. Minimal intervention dentistry: part 1. From ‘compulsive’ restorative dentistry to rational therapeutic strategies. Br Dent J. 2012;213(9):441-5. Dworkin G. The theory and practice of autonomy. Cambridge: Cambridge University Press; 1988. Herring J. Medical negligence. Medical law and ethics: OUP; 2010. p.142. Beauchamp TL, Childress JF. Respect for autonomy. Principles of biomedical ethics. USA: Oxford University Press; 2008. Buccini LD, Caputi P, Iverson D, Jones C. Toward a construct definition of informed consent comprehension. Journal of empirical research on human research ethics: JERHRE. 2009;4(1):17-23. Hafferty FW, Levinson D. Moving beyond nostalgia and motives: towards a complexity science view

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of medical professionalism. Perspect Biol Med. 2008;51(4): 599-615. Williams JR. Medical ethics manual. World Medical Association; 2009. Rowe K, Moodley K. Patients as consumers of health care in South Africa: the ethical and legal implications. BMC medical ethics. 2013;14:15. Reeder LG. The patient-client as a consumer: some observations on the changing professional-client relationship. J Health Soc Behav. 1972;13(4):406-12. Welie JV. Is dentistry a profession? Part 3. Future challenges. J Can Dent Assoc. 2004c;70(10):675-8. Cribb A. Health and the good society. Oxford University Press; 2005. Sheiham A, Watt RG. The Common Risk Factor Approach: a rational basis for promoting oral health. Community Dentistry and Oral Epidemiology. 2000;28(6): 399-406.

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The changing nature of consent.

Consent is a foundational principle of medical and dental ethics. The importance of the concept has changed over time and it is now viewed as more imp...
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