Countering Patients' Irrational Fear of Side Effects

Dr David Quek

"Doc, I've been taking these medicines for a year now. Are there any side effects? A friend said that it's not good to take any medicine for too long. Should I stop now or not?" Questions such as these are becoming more frequently asked. Indeed, patients are becoming more inquisitive through being better informed. However, a little knowledge is sometimes a very dangerous thing. In recent years, it is not uncommon for patients to want to know more about their illness and the medications they are taking.

They have been told that it is their right and that doctors ought to furnish all the details as to their ailment and the medications which have been dished out to them. They want to know all about the therapeutic effects, and their possible side effects.

While this is a commendably good development, (which should certainly be encouraged), there are distinct and dangerous possibilities that such limited and incomplete knowledge, might be misunderstood and misinterpreted. Unjustifiable fear of many purported side effects may prompt many a patient from taking his or her medications as instructed, or to refuse life-saving measures. Noncompliance and refusal can then be expected, with the patient suffering the consequence unwittingly.

To some extent, certain consumer associations which have touted and exaggerated the dangers of these effects without weighing the actual benefits and advantages of undergoing treatment, should share the blame for this morbid fear of potential adverse or side effects. To be sure, we are all concerned about potentially harmful effects of any consumable substance, medication or products.

However, we should also consider very carefully why these medications or treatment are necessary in the first place. Clearly, we should not forget that medications are intended for the purpose of curing or controlling an ailment, for without which, the ailment can in the near or long term, cause serious harm or even death to the sufferer.

As medical practitioners, we have the unenviable position to influence how our patients react to their illness and the requisite treatment. We now have to spend much more time than was previously the case to enlighten our patients about their ailment, and to try and convince them about the merits of therapy or otherwise. This obviously also implies a ready listener who is willing to accept the findings and diagnosis of the doctor. A certain degree of rapport and mutual trust toward one another is implied, but this is perhaps not always the norm, nowadays.

In view of the increasing publicity of some serious allegations made against a few unscrupulous medical practitioners, many patients are understandably wary and even suspicious about the doctor they are meeting for the first time. Hopefully, not all patients would have acquired such a cynical approach towards every doctor, as this would sour any meaningful doctor-patient relationship.

By and large, many doctors are genuinely interested in their patients and are most willing to bend over backwards to accommodate even the most demanding and trying patient.

I know of several family physicians, who routinely accompany their very ill patients to the specialist's office to whom they refer for expert advice. Here, their heart-felt concerns can help the anxious patient tremendously. Some also visit their patients at their own home or in the hospital. This sort of continuing care and concern is therefore very much a personal service which is laudable, and which cannot be quantified with monetary gain.

Clearly, patients when accorded such personalized services, are often very close to their physicians, and trust them implicitly. In such cases, a genuine partnership develops and both patient and doctor enjoy an understanding and rapport which can only benefit the health of both. In such cases too, it is unheard of, for disgruntled patients to disobey the instructions and therapeutic plans of the doctor. Few if any, would suffer the consequence of "side-effects" from the drugs prescribed, because they have a ready and immediate recourse to contact the doctor and are sure of being reassured and informed accurately and promptly.

More importantly, these patients have an understanding about their illness which they are comfortable with. They also know that they have to take certain medications because, they would like to be cured or have their chronic illness, such as hypertension, diabetes or arthritis controlled. They would then not scurry around seeking for second or third opinions, hoping to find some answer which only they, find most reassuring.

Here the doctor has an important role to play, i.e. to disseminate as lucidly and as simply as possible the diagnosis of the ailment, in a language that every layman can understand, and then to discuss the treatment needed. Yes, he should also explain the rationale of the treatment and the possible side effects. However, explaining to the satisfaction of every patient with varying educational and experiential backgrounds can be very difficult, if not impossible. Besides, not every doctor is born with the gift of the gap, and many find it extremely hard to discuss medical knowledge in lay terms. Still, we must certainly try to do even better.

Many of us have encountered patients (and their relatives) who have completely misunderstood all the explanations given, just minutes or hours after these have been done! Frustrating as this may be, it is nevertheless, necessary for us to try and reach out to our patients so that even if they understood some small fraction, it is worth the while. This is especially important when trying to get a written consent from a patient or the relatives for an operation or therapeutic procedure.

A few months ago, on anaesthetic recovery from retinal surgery, a patient was wheeled into the CCU with frank acute pulmonary edema, coughing up copious amounts of pink frothy sputum, and was literally drowning in his own pulmonary transudates. I was called to see him and was naturally rather concerned that his condition was quite serious. He was re-intubated, ventilated, given morphine, and some intravenous medications to lower his severely elevated hypertension.

After stabilizing him, together with the anaesthetist, we approached the patient's family members to inform them of the dangerously ill status of the patient. Although his condition was bad, it was difficult to quantify the risk. However, when a son asked if death was a probable outcome, we had to agree, at that point in time, just to prepare them of any eventuality. The son then went out to the recovery room, and returned with the entire troop, of wailing, weeping, even swearing relatives, who had been informed that the patient was dying, and that his chances were practically nil.

After haranguing and shouting at us, about why this had happened, they demanded to know why no one especially the ophthalmologist had informed them of this possibility, pre-operatively. They claimed that they were told that it was a routine operation, and of low risk. However, they failed to inform the consultant, that the patient's blood pressure and diabetes control were less than optimal for some time now. Fortunately, however, the patient recovered after a few days and returned home none the worse. This episode illuminates a few issues.

Misinterpretations are very common even in the most closely monitored situations, and cannot be totally avoided. However, we all have to conscientiously try to minimize these, so as to avert any untoward and potential nerve-wrecking litigation. Always corroborate your findings and explanations by writing good notes. Oral explanations should be properly witnessed by a nurse or colleague.

But as the case above illustrates, you cannot reasonably itemize every potential risk or hazard of any procedure or treatment. For the uninitiated, after hearing all such possible bad effects or risks, these would very often seemingly outweigh the benefits of a particular therapy, and the patient or his relatives might then decline to undergo the procedure, to their own detriment. Of course, one should not underplay or underrate true risks which should be made known to the patient. More importantly, the benefits and advantages should be made explicitly clear so that the patient's doubts can be reasonably allayed.

All good medical practice is ultimately to try and achieve a better outcome for the patient because of the given or prescribed treatment, which in all cases should outweigh the side effects or potential hypersensitive, allergic or idiosyncratic reactions.

An implicit trust and unwritten contract should be established between the patient and the doctor. The doctor will do his or her best to diagnose and treat the patient, and the patient has a duty to accept and comply with the treatment prescribed. The patient should not be unreasonably concerned about all potential side effects, just because he or she has been taking the medications for some time. If one has any doubts, one should seek a better understanding by asking one's doctor, but do not act hastily and unilaterally. Sometimes, abrupt withdrawal from medications can precipitate serious rebound effects, e.g. severe accelerated hypertension or even unstable angina.

Remember that ultimately, the one who suffers would be the patient who has dropped out of treatment because of non-compliance. It is also important to note that one cannot attribute all untoward symptoms to the medications that one is consuming. In many cases, they are not related.

In this regard it is useful to remember that even if one is taking a placebo, it is also possible to suffer some untoward effects, no matter how inert and innocuous that substance may be. Clearly, some of these so-called effects are chance events which are only temporally-related to the actual consumption of the drug and a meticulous scrutiny on every possible effects, mandated by the clinical trial design. In fact, it is a truism that if a product has no side-effects whatsoever, it is probably inactive or useless.

We must also counter the impression that western-type medications are associated with cures only for specific illness, and do not help to maintain health and fitness. In fact, this is the ploy so often employed to promote supplementary substances which pharmacies and alternative medical practitioners use. Take this supplement or that herbal preparation because they are good for preventing this or that ailment, without the needed standards of proof. The remarkable thing is that many patients as consumers, are very ready to accept such a concept and not fault such a practice even when they do fall ill later ("...because, these supplements are not meant for that!", they argue.)

One of my patients recently showed me some supplementary pills which have been recommended by a friend (who clearly was pushing a multilevel marketing scheme). These comprised of some USA-made pills: "Mineral Power" containing aloe vera, bee pollens, natural minerals, cost: RM 170 for 132 g; "Natural Chewable Zinc" containing vitamin C, Bee propolis, cost: RM 35 for 30 tablets; "High Potency MultiVit" containing minerals and herbs, cost: RM 75 for 60 tablets; "Phoschol 565" containing pure phosphatidylcholine, cost: RM 170 for 60 softgels; "DORS*5 Super Revitalizer" containing glory garendenia, radint galvae, pollen, panax quinqueqorum, amber, fruitus amatii, ginseng, cordyceps sinensis, cost: RM 280 for 100 capsules!! A total of RM 730 spent simply for supplements!

What can the long-suffering doctor say or do, since he would have to justify even to include his professional fee in his bill, perhaps RM 10 to 25 per visit. It certainly boggles the mind. How can one re-educate our patients, the consumers out there, that they have to be less easily persuaded or enticed by quick cures and panacea-inducing supplements? We certainly have lots more to do, but we must try.

Therefore, as physicians, we should remember, that these days, we have many competing systems of beliefs and health. Our medical practice must be shown to help the patient, and not the other way round, i.e. to cause harm. The onus is on us to try and convince our patients that what we are prescribing for them as treatment are necessary and good for them.

We have to highlight the fact that our health practices and technology are there to combat illness and promote health, to ensure longevity, as well as to ensure a better quality of life. For chronic illness, we have to make that special effort to impress upon them the necessity of medications in the hope that fatal and serious outcomes are averted or postponed. We must counter the morbid and irrational fear of side effects more effectively for the good of our patients. We must persuade them that our system is the preferred choice, indeed the most rational choice.

/May 97

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