Uninformed consent

In a recent New York Times piece (July 30, 2009: Treating Patients as Partners, by Way of Informed Consent) Pauline Chen discusses the trends towards involving patients in their own care. Comments on her blog range from those who think patients are too stupid to sign off on any medical treatment to those who supported the idea that patients should be given even better explanations of their health care treatments than they presently do. The unstated issue in informed consent is that patients are being asked to take responsibility for taking risks to their health without a full understanding of what these risks mean. In fact, it is not clear to me that doctors themselves fully understand the meaning of the risks they are asking their patients to take.

Some of my colleagues tell me that in discussing the risks of a treatment with people it's important not to frighten them, or it's important to put the risk in perspective for them. What this means to me is that we as doctors must present the risk from our own perspectives as physicians rather than objectively. It starts from the premise that the patient should consent to the treatment, because we as physicians have decided (beforehand) that the benefits that might accrue from the treatment outweigh the risks. But this is a biased position. Risk assessment is very much in the eye of the beholder. Some people are petrified to drink tapwater out of fear they might be poisoned and others smoke, use drugs and all manner of foods and substances, or lie out in the sun all day because they believe that their own personal risk is low for these behaviors. In some cases they will be right and in other cases, wrong. But doctors know who is right and who is wrong no better than patients do. They only know statistics, and statistics do not usually account for individual risk, only for group risk.

Moreover, doctors are for the most part familiar only with medically oriented treatments, and not with alternative medical treatments. When your doctor tells you to take a proton pump inhibitor for GERD, does the doctor know what the botanical treatments, acupuncture or homeopathic treatments have to offer? Is the doctor familiar with the risks and benefits of these and how they compare with proton pump inhibitors? Of course not! These are not made a part of physician training for the most part in the United States (but not necessarily in foreign medical schools). So when the "alternatives" to proton pump inhibitors are discussed, they are usually dismissed summarily, without a full appreciation of what is being dismissed. It is usually assumed by physicians that only treatments that are endorsed by the conventional medical establish have any merit, because if there were others that deserved attention, they would have learned about them in their training. There is not a shred of truth to this assumption, but it is firmly embedded in most doctors' thinking.

The literature on drugs that is distributed for patients and the advertising that is seen on television continues to tilt peoples' perspectives in the direction of choosing drugs for yourself or your family. The on-line information resource known as "Adult-Pals: Adult Patient Advisory Leaflet System (see online.lexi-com) describes the side effects of Lithium Carbonate as "feeling lightheaded, sleepy, having blurred vision, or a change in thinking clearly...shakiness, headache, nausea or vomiting...frequent urination." No mention is made of the more serious medical consequences of chronic Lithium use: thyroid failure, and kidney disease. Many of the more disturbing side effects such as weight gain, dry mouth, and diarrhea are omitted. For Risperidone, the side effects are given as "feeling lightheaded, sleepy, having blurred vision, or a change in thinking clearly..feeling dizzy, high blood sugar (usually reverses when stopped), weight gain, change in sexual ability or desire (this is usally reversible), drooling, inability to sleep." There is no mention of the more serious consequences of taking the drug such as tardive dsykinesia (an irreversible neurologic condition characterized by disfiguring involuntary motions), dystonias, neuroleptic malignant syndrome, or metabolic syndrome. In fact, the "information" discourages people from looking at the diabetes and sexual dysfunction as permanent (They describe these side effects as "reversible.") even though Risperdal is almost always prescribed for long term use. The only reason it is not taken indefinitely by patients is that it doesn't work that well or it can not be tolerated for long periods of time by some patients because of the serious negative effects on their health.

While not everyone may want to partake in the decision-making process that most medical treatment requires, leaving all the decisions up to the physicians is a cop-out which permits the more paternalistic side of physicians to flourish more than it ought to. Sorry, to those of you who want to leave all the thinking up to the good doctor, but the good doctor needs you to be a part of your own treatment (excepting in cases of emergency of course, when time does not permit this to happen). Unfortunately, even for those who wish to be part of the decision-making process, all the information needed to make an informed choice is rarely on the table.