Communicating risks Means that patients too have to learn to live with uncertainty T he epidemic this year of severe acute respira- tory syndrome (SARS) etched another chapter into the annals of risk science. So do all the major ���scares���: bovine spongiform encephalopathy (BSE) and its potential effect on humans through vari- ant Creutzfeldt-Jakob disease the scare about third generation oral contraceptives in 1995 and the feared link between autism and measles, mumps, and rubella (MMR) vaccination. On p 725 Bellaby discusses these particular risks and describes how public reactions that on the face of it may seem irrational in fact have understandable origins.1 Most of this theme issue, how- ever, is concerned not with mass communication about risks but with one to one interactions between health- care professionals and patients about their individual risks. Clinicians want to know how best to communi- cate risk to their patients, and this issue aims to help. Thus O���Connor et al (p 736) describe how decision aids may help by structuring the way risk information is presented, displaying options, and helping patients to clarify their values in healthcare decisions.2 Gigeren- zer and Edwards (p 741) show how numerical information can be simplified to turn innumeracy into greater insight.3 Paling (p 745) develops this further, offering some simple rules of thumb for clear risk communication.4 Experts may think of risk as derived from scientific research, but patients want to know whether or how they will be affected. Alaszewski and Horlick-Jones (p 728) examine how we need to under- stand more about individual perspectives, people���s understanding of risk, the context in which they would have to ���live��� this risk, their beliefs, and opportunities to influence the risk in question.5 Yet risk communication also needs to be set in a much wider context. All these authors emphasise that successful risk communication depends on establish- ing a relationship of mutual respect and trust between those concerned (usually the patient and the professional). Trust is a function of both care and com- petence.4 It is also integral to credibility���a key consid- eration for whether a message is received and taken up (by individuals or populations). So the professional values of competence, expertise, empathy, honesty, and commitment are all relevant to communicating risk: getting the facts right and conveying them in an understandable way are not enough.6 Trust and support are built up most through conversations between clinicians and their patients.7 The nature of the interaction does not, however, remain static. Mazur, and his commentators from France and Britain, discuss the legal requirements for informed consent that set the framework for both research and everyday practice (p 731).8 This provides an important context for much of risk communication today, although there is much more to consent than just signing a form.9 Indeed, the ���new medical conver- sation��� outlined by Mazur10 builds on existing skills and traditional values in interactions between doctors and patients. It addresses patients��� needs for information while maintaining other aspects, such as support. Support is necessary because communicating risks entails confronting important uncertainties, and this is often uncomfortable for both patients and profession- als. The information available is full of uncertainties, and uncertainty is also irreducible about who will or will not be affected by specific outcomes. Offering too much apparent certainty may be to misinform. It is also important to ask what we are trying to achieve in communicating information on risks to our patients. Traditionally perhaps the goal was seen as simply trying to reduce risk and improve the population���s health. But with shifts towards greater autonomy for patients, the goal is changing to become one of informing people, enabling them to make their own choices, regardless of whether this reduces risk. Godolphin sets risk communication firmly in a context of shared decision making,11 and studies show that patients want not only information but also often par- ticipation in the decision making.12 This may lead to ���informed dissent��� (a somewhat pejorative term), which may in turn produce tensions between what is perceived to be good for populations and what individuals perceive to be good for themselves.13 We may need to accept that increased involvement of patients (and risk communication as a means towards this) may therefore be based more on values than on evidence. The new medical conversation thus integrates risk communication into the doctor-patient interaction while remaining loyal to core consulting values. The information offered should be simple, relevant, and responsive to the needs and values of individual patients, not assuming what is most important. There should be a two way exchange of opinions and values, as well as information, seeking to maximise trust and support. This may need to be done over a series of consultations rather than being one event. Truthful- ness is fundamental���but will leave uncertainties. Yet acknowledging these uncertainties, and accepting patients��� decisions, may enhance the role of and Saturday B MJ2003September27 BMJ 2003 327:691���2 691 BMJ VOLUME 327 27 SEPTEMBER 2003 bmj.com

respect for professionals, not diminish it.14 In this way a balance may be struck between the ���high touch��� and the ���high tech��� approaches.14 Adrian Edwards reader Primary Care Group Swansea Clinical School, University of Wales, Swansea SA2 8PP (adriangkedwards@btinternet.com) Competing interests: None declared. 1 Bellaby P. Communication and miscommunication of risk: understand- ing UK parents��� attitudes to combined MMR vaccination. BMJ 2003 327:725-8. 2 O���Connor AM, Stacey D, L��gar�� F. Risk communication in practice: the contribution of decision aids. BMJ 2003 327:736-40. 3 Gigerenzer G, Edwards A. Simple tools for understanding risks: from innumeracy to insight. BMJ 2003 327:741-4. 4 Paling J. Strategies to help patients understand risks. BMJ 2003 327:745-8. 5 Alaszewski A, Horlick-Jones T. How can doctors communicate information about risk more effectively? BMJ 2003 327:728-31. 6 Nicholson P. Communicating health risk. Occup Med 1999 49:253-6. 7 Katz J. Informed consent���must it remain a fairy tale? J Contemp Health Law Policy 1994 20:69-91. 8 Mazur D. Influence of the law on risk and informed consent. BMJ 2003 327:731-6. 9 Gigerenzer G. (Un)informed consent. In: Reckoning with risk���learning to live with uncertainty. 1st ed. London: Penguin, 2002:87-114. (Chapter 6.) 10 Mazur D. The new medical conversation. Boulder, CT: Rowman and Littlefield, 2002. 11 Godolphin W. The role of risk communication in shared decision making. BMJ 2003 327:692-3. 12 Guadagnoli E, Ward P. Patient participation in decision-making. Soc Sci Med 1998 47:329-39. 13 Edwards A, Unigwe S, Elwyn G, Hood K. Effects of communicating indi- vidual risks in screening programmes: Cochrane systematic review. BMJ 2003 327:703-7. 14 Edwards A, Elwyn G, Mulley AG. Explaining risks: turning numerical data into meaningful pictures. BMJ 2002 324:827-30. The role of risk communication in shared decision making First let���s get to choices I want to feel like a rational and autonomous person, even when I���m ill. Doctors ought to use their power (legal and knowledge) not only to relieve suffering but to enhance patients��� autonomy.1 A prescription for this is shared decision making, a middle ground between ���nanny knows best��� paternal- ism and rampant consumerism���an ideal that aims to reconcile the fact of professional power with the ethic of informed choice. Laws are leaning towards informed choice. For example, the supreme court of Canada in 1980 ruled that doctors have a legal obligation to disclose, unasked, whatever a reasonable person in that patient���s particular position would want to know before making a decision. The ethical positions of medical guilds have more or less followed suit: ���Duties of a doctor [are to] give patients information in a way they can understand respect the rights of patients to be fully involved in decisions about their care.���2 Informing patients and involving them in decisions therefore seem to be a doctor���s duty. It is within the ���black box��� of the medical encounter that patients most value information and the doctor���s help in interpreting it. A consistent theme in studies is that patients want more information than they get. How often they mean risk information is less clear. Risk communication is risky. We are predictably fallible and prone to biases in our judgments of risks and our use of information.3 There are relatively few medical problems for which good risk information is available. Uncertainty changes (as women taking hormone replacement therapy will have noticed recently). Risk evidence rarely includes psychosocial outcomes, although these are important to individual patients. The autonomous patient may not make a ���better��� medical decision, nor will better decisions guarantee better outcomes for the individual. Informed and shared decision making has been called the crux of patient centred care4���an interesting choice of words. On a rock climb, another high risk activity, the crux is the hardest move, the one on which the whole enterprise depends. Shared decision making, of the informed sort, is difficult, and evidence shows that it rarely happens. For example, options and patients��� understanding of information and role are rarely explored.5���7 This deficiency is often attributed to attitude: ���Doc- tors . . . provide patients with too little information about the side effects of prescribed medicine . . . Short- falls could be corrected by a change in attitudes, rather than a change in structures.���8 But the time available in the consultation and the training of doctors (for exam- ple) are functions of structure.9 Formative medical training, when students are ���professionalised,��� tends to be in acute care. They are taught to be responsible in settings where choices are few and patients��� autonomy is limited. They are rewarded for being confident and getting the ���correct��� answer. This is unlikely to foster a predisposition to, or practice of, offering choices or enhancing patients��� autonomy. They are taught interviewing and history taking but not much about giving patients information or risk communication. Most of our communications skills are habitual and learnt from role models���hard to change even when we wish. Are the most influential role models and opinion leaders also competent at shared decision making? The things a doctor ought to be able to do to engage in shared decision making have been proposed.10 The story begins after the problem is iden- tified. It includes explicit clarification of roles information preferences discussion of options with reference to the patient���s characteristics and the evidence response to the patient���s ideas, concerns, and expectations and partnership building. A statement of options seems to be a good starting point that may lead to the other elements. Editorials BMJ 2003 327:692���3 692 BMJ VOLUME 327 27 SEPTEMBER 2003 bmj.com