Balancing the benefits and risks of choice

Last week, Public Health England (PHE) published new guidance: Opting out of the NHS population screening programmes. This guidance is a tacit acknowledgment that screening in the UK faces serious challenges in how it is perceived and used by the public. It signals that there are limitations to the evidence, the idea of prevention, and cost. It suggests a major shift in the public's perception of screening in society, as well as raising issues of patient choice and informed consent. The guidance covers very basic instructions for opting out of five screening programmes: bowel, cervical and breast cancer, diabetic eye, and abdominal aortic aneurysm screening, and directs visitors to a slightly more informative NHS Choices screening site for consideration of benefits versus risks. To have reached this juncture indicates that the screening programmes that are often advocated by patient groups are not universally popular. Yet prevention remains important. The screening benefits and risks covered in the NHS Choices website are clear, but the responsibility to elaborate and explain further must lie with a patient's general practitioner, should the patient request more information. The act of opting out is symbolic: informed consent gives the patient power to choose to opt out, but also the right to opt in to treatment. The patient must have sufficient understanding of the consequences of their actions to make an informed choice, yet both the information made available as well as the individual's ability to interpret that information will be variable. Although informed consent creates an impression of control and understanding, it is not possible to measure how frequently inadvisable decisions are taken, nor their consequences. In the shift towards patient choice, the balance of care has altered. Paternalistic medicine at its best led to well-informed doctors understanding the patient, knowing their values and concerns, using their training to apply science to the treatment of illness, and ultimately selecting the treatment that best suited the context of an individual's life. Spending time getting to know the patient, and applying principles of beneficence and humanitarianism should still be possible to enable patient choice. But not everyone wants to control their own treatment, nor is in a sufficiently informed position to do so. This past week, the US Food and Drug Administration (FDA) also issued a statement warning against the widespread use of screening for ovarian cancer, with regard to the commonly used CA125 blood test. Their advice, aimed at both women and physicians, is two-fold: that such screening gives unreliable results that can lead to unnecessary treatment, and that high-risk cases may not emerge through the screening process but should be routed through specialist care. Similarly, in the UK, a PSA screening programme is not currently offered. NICE guidelines advise transparency so that patients understand an active surveillance approach and are well informed about their treatment options. With regard to PSA in the UK, the implications of invasive treatment—and that this may easily become overtreatment—have been effectively communicated and widely understood. But to what extent should a patient decide for themselves what risks they are willing to be exposed to? Again, there is underlying symbolism that reflects a philosophical shift in the place of medicine in society, and in medical ethics. For the patient, good health might be only one objective among many. Moreover, the doctor's responsibility to understand a patient's full circumstances is in flux. Through a combination of time pressure on medical appointments, and patients being directed to websites to make their own management choices, depersonalisation increasingly underlies patient choice. The issue of litigation must also be considered. When opting out, patients may not be fully informed about their legal rights for future events. And in the USA, insurance companies will undoubtedly also weigh in regarding FDA recommendations, using those as a basis for approving any claim's eligibility. There has to be a limit on what we can ask medicine to do—the covenant between medicine and society can only go so far. One cannot force someone to do what's in their interest. But responsibility for clinical care and its outcomes must surely remain a matter for a medical practitioner. The interpretation of evidence correctly lies with trained specialists, but the balance of how that evidence is communicated to a lay public, and used to inform clinical decisions, is an increasingly difficult one to acheive.