Concordance poses ethical and legal challenges

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BMJ 2003;327:819 (11 October)


Editorial
Prescribing and taking medicines
Concordance is a fine theory but is mostly not being practised

About half of the medicines prescribed for people with chronic conditions are not taken.1 This is assumed to have large personal, economic, and societal costs,2 but are patients really any worse off for not taking their medicines as prescribed? Doctors say that not taking drugs means poorer health outcomes, but patients argue that only they can know what works for them and what doesn't. Bridging the gap between the agendas of patients and doctors changed the emphasis from the authoritarian concept of compliance to the more inclusive concept of concordance. Concordance means shared decision making and arriving at an agreement that respects the wishes and beliefs of the patient. What it should not be is a more gift wrapped version of compliance.3

The concordant model of shared understanding and prescribing should improve health outcomes. Why then has it proved so hard to put into practice? One problem is that most health professionals either have not heard of the term, or they don't understand it. This is not surprising when so little evidence exists on the information needs of patients and prescribers, on how to improve communication skills, and on whether better communication does improve outcomes.4 5

Another problem is that shared decision making based on shared understanding relies on the provision and exchange of accurate, relevant, and accessible information. The advent of the internet has vastly increased the availability of information, but often what it offers is untailored, incomplete, irrelevant, and plain wrong. Information can be contradictory—even simple instructions from a doctor on how and when to take medicine can be contradicted only 10 minutes later by a pharmacist. High quality information is essential if concordance is to succeed6 but in itself will be useless without the ability to share and use it.

The perception of patients and doctors of the risks and benefits from medicines differs, especially when medicines are being used to prevent rather than treat symptoms.7 The study by Lewis and others shows that patients and health professionals find the concepts of risk and benefit difficult to understand, and in deciding whether to start preventive treatment doctors were more likely to accept smaller benefits than their patients.7 That patients do not persist with regimens that cause adverse effects balanced against only hypothetical benefits is hardly surprising. Evidence based guidelines on treatment will be useful only if the subjective element of patients' preferences and values is acknowledged and explored.

Concordance poses ethical and legal challenges when a decision is made that is ultimately detrimental to a patient's wellbeing. At what point does accepting such a decision fall outside of a doctor's foremost duty to do no harm? This is further complicated when a patient's dissent to treatment has the potential to threaten the health of others—for example, with tuberculosis.8

All the challenges to concordance are most difficult when the patient is a child—communicating well enough to allow an equal contribution to decision making is difficult because third parties—parents—are involved.9 When can children take responsibility for their medication? Should more weight be given to the parents' wishes or the child's? What if the parent, child, and doctor all disagree? Although we can go some way to answering these questions, little evidence is available.9 But we should not assume that the same rules for achieving concordance in adults apply to children.

So what next for concordance? For it to be a success a change in practice is required. Because concordance is an evolving concept and the sum of many parts it is a difficult subject to research in its entirety. The emphasis should turn to patients' needs and wants and how they influence the way they take medicines. More evidence on the specific elements of the prescribing process and how they interact is required. Patients need information that speaks in clear terms that reflect what matters to them, and prescribers need practical tools to use information in the consultation. The biggest challenge for concordance and the most difficult to research will be a change in values.

Giselle Jones, papers editor

BMJ (gjones@bmj.com)




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Competing interests: None declared.
References


Haynes RB, McKibbon A, Kanani R. Systematic review of randomised trials of interventions to assist patients to follow prescriptions for medications. Lancet 1996;348: 383-6.[CrossRef][ISI][Medline]
Marinker M, Shaw J. Not to be taken as directed. BMJ 2003;326: 348-9.[Free Full Text]
Heath I. A wolf in sheep's clothing: a critical look at the ethics of drug taking. BMJ 2003;327: 856-8.[Free Full Text]
Say RE, Thomson R. The importance of patient preferences in treatment decisions—challenges for doctors. BMJ 2003;327: 542-5.[Free Full Text]
Elwyn G, Edwards A, Britten N. "Doing prescribing:" how doctors can be more effective. BMJ 2003;327: 864-7.[Free Full Text]
Dickinson D, Raynor DKT, Kennedy JG, Bonaccorso S, Sturchio J. What information do patients need about medicines? BMJ 2003;327: 861-4.[Free Full Text]
Lewis DK, Robinson J, Wilkinson E. Factors involved in deciding to start preventive treatment: qualitative study of clinicians' and lay people's attitudes. BMJ 2003;327: 841-5.[Abstract/Free Full Text]
Maher D, Uplekar M, Blanc B, Raviglione M. Treatment of tuberculosis. BMJ 2003;327: 822-3.[Free Full Text]
Sanz E. Concordance and children's use of medicines. BMJ 2003;327: 858-60.[Free Full Text]

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BMJ 2004;328 (14 February), doi:10.1136/bmj.328.7436.0-f

Editor's choice
Abusing patients by denying them choice
A useful tip for smart arse medical students. If asked: "What is the treatment for x?" Don't answer: "y." Instead answer: "Whatever the patient chooses together with me after being fully informed of the pluses and minuses of all options." Giving patients choice in complex circumstances emerges as a theme in this issue—with the sombre overtone that not to give patients choice is to abuse them.
It first hit me that denying patients choice is a form of abuse when about six years ago I read a paper on patient choice in screening for colorectal cancer. One hundred Californian patients were given full information on five options: nothing, faecal occult blood testing, barium enema examination, flexible sigmoidoscopy, or colonoscopy. Patients were told about the nature of the test, the preparation required, the need for sedation, the time required, how often the test would be repeated, the likely results with both positive and negative outcomes in detail, and the cost. The result was that patients chose very different options.

Steve Woolf, a family physician and North American editor of the BMJ, wrote: "Suppose these same 100 patients had not received this information and were instead cared for by a physician who routinely performs flexible sigmoidoscopy because he considers it the best test. According to these data, fully 87% of the patients would undergo a procedure other than the one they would prefer if properly informed" ( J Fam Pract 1997;45: 205-8[ISI][Medline]). Nine out of 10 patients have been abused.

Mark Sculpher and others describe how they used something called a discrete choice experiment to help men with non-metastatic prostate cancer to choose between different options for treatment (p 382). The main conclusions are that men are willing to engage in this complex process and will trade life expectancy in order to avoid side effects. Mandy Ryan discusses how the technique can be used in other circumstances (p 358).

Some 15-20 years ago an editorial in the BMJ suggested that every menopausal woman should have hormone replacement therapy. That now looks like bad advice not only because therapy increases the risk of breast cancer, heart disease, and thrombembolism but also because only women themselves can trade off how they value the benefits and risks. A group from Leicester present a detailed decision analysis of the harms and benefits of therapy in the light of the latest evidence and conclude that two important variables are perceived symptoms and baseline risk of breast cancer (p 371). Klim McPherson weighs up hormone replacement therapy and also draws lessons from the whole sorry story of the mass drugging of women for largely non-existent benefits (p 357).

The main arguments against fully informing patients are that "It's too difficult, costly, and time consuming." But they are neither evidence based nor politically sustainable.

Richard Smith, editor

rsmith@bmj.com