Ignorance is not bliss: why we need more empowered patients

At 55 years old, patient X was very active but overweight with a body mass index of 28 and waist measurement of 38 inches. He had been a Virgin Atlantic international airline pilot for 14 years, but he then suffered a non–ST-elevation myocardial infarction in December 2014.

Coronary angiography revealed a sub-totally occluded circumflex artery for which he underwent coronary stenting. He was prescribed the standard cocktail of medications following acute coronary syndrome — aspirin 75mg, clopidogrel 75mg (for one year post-stent insertion), bisoprolol 2.5mg, ramipril 2.5mg and atorvastatin 80mg — and discharged.

He was then contraindicated to fly as a commercial pilot and went back to regular activities, but approximately one year later he started to experience some disabling and persistent symptoms, namely extreme fatigue, muscle aches, memory disturbance and erectile dysfunction.

Attributing this to his statin medication (Pfizer’s own leaflet states 1 in 10 may suffer these side effects), patient X stopped his atorvastatin 80mg and within weeks he noticed a marked improvement in his quality of life “in every respect”.

Patient X decided not to take any medications and continued with a lifestyle approach to manage his coronary disease

Carrying out his own research of the evidence, he determined the number one risk factor for heart attack is insulin resistance^[1]
, also linked to obesity, and subsequently decided to dramatically change what had been his standard diet for decades. Specifically, he cut out processed carbohydrates (starch and sugar), rice, potato, pasta, biscuits, chocolate bars, cakes, sweets and juice. He instituted a high-fat, Mediterranean-style diet that included plenty of non-starchy vegetables, oily fish, eggs, full fat dairy, nuts and mixed berries.

Maintaining the same levels of exercise, he lost three stones in weight over five months, and his waist circumference decreased to 30 inches.

He met a cardiologist with a special interest in cardiovascular prevention for further discussion about the requirement for medicines in secondary prevention and whether his lifestyle changes were optimised to reduce further risk. Following a detailed discussion, the cardiologist agreed that, after looking at the evidence, the patient has made a fully informed decision in stopping his medicines and suggested that the patient should consider a low-dose statin that was less likely to give him side effects and to recommence aspirin.

After careful consideration, patient X decided not to take any medicines and continued with a lifestyle approach to manage his coronary disease, especially because his cardiovascular risk markers were excellent. Over the past 18 months, since being off all medications and adjusting his diet, he completed numerous triathlons, including a half Ironman — a long-distance triathlon — and a marathon. He feels in the “best health of his life”.

Although we do not advise patients to stop any medication without consulting a healthcare professional, many features of patient X’s case represent the gold standard approach to evidence-based medicine, which is the integration of individual clinical expertise, use of the best available evidence and, most importantly, taking into consideration patient preferences and values^[2]
. But it is very unusual.

This particular patient is also a former mathematics teacher and has a good grasp of statistics. For example, he was able to learn for himself from thennt.com, that for aspirin there is a 1-in-333 chance and 1-in-77 chance of mortality and non-fatal heart attack benefit, respectively, and for statins a 1-in-83 chance and 1-in-39 chance of mortality and recurrent non-fatal heart attack benefit, respectively. (Thennt.com is developed by a group of physicians to provide quick summaries of evidence-based medicine therapies on patient-important benefits and harms. They receive no outside funding or advertisements.)

But many patients are not this numerate or able to understand the meaning of simple statistics — nor should they be expected to. It is up to the healthcare team around them to do this.

Several barriers currently hinder the routine gold standard incorporation of shared decision-making

The patient became aware of the ‘Choosing Wisely’ campaign, which is part of a global initiative aimed at improving conversations between patients and their healthcare providers to reduce the potentially harmful effects of taking too much medicine. As a result, he asked himself the questions he was not empowered to by healthcare professionals following his heart attack: “Do I really need this test, procedure or medication?”, “What are the risks?”, “What happens if I do nothing?” and “Are there simpler or safer options?”^[3]
.

Without transparent communication of risk, one cannot adhere to evidence-based practice that requires an understanding of the evidence taking into consideration patient preferences and values. This is known as shared decision-making. Some patients, for example, would choose not to take a pill (through inconvenience, cost or side effects) that may add years to their life expectancy, whereas others may choose to take a pill on the basis it may add only a few weeks to their life expectancy.

Even less understood is that overdiagnosis and overtreatment represent a major threat to the sustainability of healthcare

Several barriers currently hinder the routine gold standard incorporation of shared decision-making as a main component of evidence-based practice in healthcare. The most important of these is lack of knowledge.

Most healthcare professionals know that 80% of cardiovascular disease is in fact caused by lifestyle factors, including an unhealthy diet, smoking and a sedentary lifestyle. But most are not aware of results from high-quality observational studies and randomised controlled trials which reveal that dietary changes rapidly reduce cardiovascular risk in addition to reducing morbidity and mortality^[4]
.

Even less understood is that overdiagnosis and overtreatment represent a major threat to the sustainability of healthcare, with medical researcher Peter C Gøtzsche estimating, based on the best available data, that prescribed medicine is the third most common cause of death after heart disease and cancer^[5]
. In 2011, Don Berwick, president emeritus of the Institute for Healthcare Improvement, estimated that around a third of the United States’s $3 trillion expenditure on healthcare brings no benefit to the patient^[6]
; and Sir Bruce Keogh, former medical director of NHS England, has suggested that up to one in seven NHS medical and surgical treatments should never have been carried out.

And there is an epidemic of misinformation, making it doubly hard for healthcare professionals and patients to know the actual benefits and risks of the treatment they are taking, with biased funding of research, biased reporting in medical journals, biased reporting in the media, commercial conflicts of interest and an doctors being unable to understand and communicate health statistics^[7]
.

As Gerd Gigerenzer, director of the Harding Center for Risk Literacy, states in a World Health Organization bulletin in 2009: “It is an ethical imperative that every doctor and patient understand the difference between relative and absolute risk (or NNT) to protect patients from unnecessary anxiety and manipulation”^[8]
. But in a survey of healthcare professionals on a training programme, 70% failed a simple three-question test on critical appraisal of evidence-based medicine^[9]
.

Add to this a system with financial incentives for clinicians to treat according to thresholds (such as blanket prescription of statins in patients with a 10-year cardiovascular risk >20%) — as opposed to a system where care is explicitly informed by the best evidence and tailored to a patient’s values and priorities. The result is an environment that is hostile to giving patients the power to make decisions about their own care^[10]
.

On 15 June 2018, the Choosing Wisely project will launch its second phase and, as a result, will go beyond just providing a list of investigations and treatments that provide no benefit to patients; it acknowledges that doctors don’t always know best and suggests that shared decision-making should be given top priority in patient management.

First, it is essential that (currently non-existent) skills for shared decision-making and evidence-based practice be incorporated as a mandatory educational tool in undergraduate and postgraduate medical training for all healthcare professionals. Second, clinical guidelines (by providing shared decision-making tools) must emphasise that making the ethical care of the patient is the top priority. With greater emphasis on community care, pharmacists must also have a role in having these discussions to help patients have a better understanding of the medicines they are taking when collecting prescriptions and also to reduce the potentially harmful effects of polypharmacy.

This will result in at least three powerful victories for healthcare provision: in ethics, in policy and in finance. As pointed out in the 2012 ‘Patients’ preferences matter’ report from the King’s Fund, “because patients choose fewer treatments when fully informed, the NHS could save billions of pounds”^[11]
. This goes beyond a black and white approach of phasing out treatments that have no benefit for patients at all as more robust data becomes available to a huge grey area in healthcare, especially in managing chronic disease where marginal benefits of treatment are weighed up against often equal risk of harm.

It’s time to enter a new era in healthcare to produce better healthcare professionals, better patients and better decisions, where shared decision-making is the most important outcome that matters when it comes to evidence-based practice. It is time that patient X is not the exception, but the rule.