Do doctors prefer patients to be "obedient"? Gavin Yamey is trying to come to a deeper understanding

There is nothing more frustrating in medicine than caring for "heartsink" patients who ignore all of our medical advice. We watch in horror as they refuse to take their life enhancing medicines and continue to adopt risky practices. Up to one fifth will never take their prescription to the pharmacist,¹ up to a half will delay or omit doses,² and many will never turn up at specialist outpatient clinics.³ Their behaviour contributes to their illness and premature death. It causes us irritation, confusion, sad- ness, and anger. Are we powerless to change this interaction with patients, or are there ways to break the impasse?

 

Compliance is now concordance

As doctors, we tend to like those patients who do what they are told. Such patients are "complying" with our advice. But this kind of paternalistic relationship is outdated and unhelpful. The patient's view of the world - based on experience, culture, family history, and personality - may be different from ours. If we see this as an obstacle to be overcome at all costs we will alienate our patients and they will continue to make unhealthy choices. Encounters between doctors and patients entail the bringing together of often conflicting explanatory systems about illness and health, and negotiation is the key to a "successful" outcome.⁴ We should try to build an honest and open therapeutic alliance with our patients, sharing our own thoughts and beliefs with them, to reach a mutually respectful agreement. This model of working is called "concordance" and it has replaced the term "compliance."⁵

This changing relationship is still in its infancy. Doctors and patients share the responsibility of making it work. Doctors will need to be more open about the benefits and risks of any treatment, and will need to be aware of the evidence for its clinical effectiveness. Patients need to understand and accept the consequences of their informed choices. Efforts to improve professional training and public awareness are at the heart of this new medical alliance.

There are many reasons why patients don't take our advice

The failure of patients to follow medical advice may be a result of their lack of understanding of a particular treatment, concerns about its side effects, or cultural influences on its acceptability. A rushed consultation that ends in a quickly scribbled prescription may leave a patient poorly prepared to take a new drug. If we want our patients to adhere to regimens, we have a duty to explain exactly what is involved.

Some patients have negative views about medicines, regarding them as unnatural substances that diminish the body's own ability to fight disease.⁶ Others hold views that come as a surprise to us. For example, patients worry about becoming physically and psychologically dependent on bronchodilators and have even more deepseated worries about the long term effects of inhaled steroids.⁷ We should try to explore such beliefs and integrate them into a shared treatment plan.

Cultural and linguistic differences may lie behind a patient's "non-compliance." Language or literacy barriers may prevent patients from understanding what they are required to do. Drawing pictures of doses and timing may be more effective for some patients than written or verbal information. Some cultures may have particular concerns about side effects, making them reluctant to take certain medications. For example, people who observe strict codes of cleanliness and modesty may be especially distressed by side effects such as incontinence secondary to diuretics, or diarrhoea caused by many antibiotics. People for whom hair has special religious connotations may be particularly upset about hair loss. Patients who have religious dietary restrictions may prefer not to take drugs that contain animal derivatives: capsules with gelatine coatings, suspensions containing gelatine, and additives derived from animal fat.

Many patients consult complementary or indigenous health practitioners at the same time as they see a conventional doctor. We should remember that our patients may be receiving different advice from elsewhere and should encourage them to let us know which complementary therapies they are receiving.

In situations where patients are not caring for themselves - not looking after their health or wellbeing - we should be alert to the possibility of an underlying mental health problem. In particular, lack of self care is associated with mood disorders, substance misuse, and psychotic illnesses. In the absence of formal psychiatric illness, a patient's "combative" behaviour may be an expression of underlying personal or social difficulties. If we as professionals feel threatened and become defensive in such situations, we have lost the opportunity for helpful intervention.

Making medicines easier to take

We have all had to take medicines at some time in our lives. Be honest - did you take every tablet at the required time and complete the whole course? If the answer is no, ask yourself why not. The answer is because most drugs are difficult to take. The pills are hard to swallow, cause unpleasant side effects and have to be taken at inconvenient times. If you have a chronic illness, your life could become dominated by the consumption of medicines. This was powerfully illustrated by the late artist and film director Derek Jarman, in an artwork composed of all the medicines he had to take for his HIV infection in one day.

It is in the interests of patients, doctors, and pharmaceutical manufacturers to make drugs easier to take. Creative alternatives can be found. For example, patches can deliver the strong opioid analgesic fentanyl through the skin in those who are unable to swallow morphine tablets. Sustained release preparations of the calcium channel blocker nifedipine or the anti-inflammatory agent diclofenac allow these drugs to be given just once a day. Some drugs, such as rifampicin and isoniazid (given to patients with tuberculosis), can be combined in a single tablet.

Antiretroviral drug regimens, used in treating HIV infection, are notoriously difficult to adhere to. The timing of many of these drugs is often complicated - some need to be taken before food, some during a meal, and some after. One possible solution is a personalised bleeper, which acts as a gentle aide mémoire. Some of these drugs have a horrible taste. Ritonavir is particularly bitter and nauseating, but its taste can be masked by mixing it into drinking chocolate. Some pharmacists even recommend coating the mouth with Marmite before ingesting the drug, though some patients find this equally as unpleasant.

Those who don't care need us more - a moral argument

Imagine that you have just seen two patients with the same chronic illness in your clinic. One has a history of perfect clinic attendance and always takes his medication. The other rarely turns up, and isn't keen on taking his prescribed pills. A new treatment has been discovered that will have a serious impact on this chronic condition, but it is being tightly rationed. Which patient will you give it to? Is the "well behaved" patient more deserving?

Len Doyal, a professor of medical ethics in London, argues that we have a moral duty to spend more resources on self neglecting patients.⁸ These patients, he believes, are socially and educationally disadvantaged, and they may lack the emotional confidence to make decisions. Professor Doyal believes that such patients are marginalised, and we run the risk of pushing them further to the margins if we ignore their needs. In the above case scenario, the two patients are not starting off with equal needs. If we give the treatment to the "compliant" patient, we will have rationed care to a more advantaged person - which is hardly moral or just.

Conclusions

Patients who don't look after themselves cause our hearts to sink, but we can counteract that sinking feeling if we "come to an understanding of people." This entails exploring patients' beliefs about health and illness, their concerns about taking medicines, and the cultural factors impacting on their ideas. We should continue to find ways to make medicines more palatable and remind ourselves of our ethical duty of care towards "heartsink" patients.