Hold your disgust: A nuanced look at paternalism in medicine

Over at his blog Gene Expression, Razib Khan expressed his disgust with the paternalism of the medical profession. His disgust was not misplaced, but he did bypass some of the subtleties.

Razib, a respected science blogger, ran smack into a frightening piece in Time. In it, doctors discuss whether and how much genetic information should be given to parents about their kids. The doctors featured evaluated a child’s genome, found a potential for early-onset dementia, and chose not to tell the parents. Let’s break this down.

Paternalism vs. autonomy

Paternalism in medicine isn’t prima facie bad. We count on professionals to use their superior knowledge, experience, and relative objectivity to help us. The premise is, “you know more than I do; help me.” The foundation of medical practice rests on centuries of paternalism taken to every imaginable extreme: surgeries performed without consent, diagnoses being withheld, forced sterilization. Over the last fifty years the reliance on paternalism has given way to our value of patient autonomy. This has been an uneasy struggle, one that lives in a grey world of few right answers.

But there are many things we as a society and medicine as a profession do agree upon. The basis of patient autonomy is informed consent. Patients should be given every opportunity to understand what we propose to do for them and be given a chance to assent or decline any test or treatment.

Once a patient has given consent, information must continue to flow. I cannot ethically order a test or perform a procedure and then withhold the outcome from the patient.

Since there are a lot of grey areas, it’s helpful to see if there are any bright lines. A patient who comes to see me signs a general consent to treatment which covers much of what we do. I don’t need to explicitly ask permission to look into an ear or to analyze kidney function. These are presumed to fall under a general consent because they are relatively minor interventions that are a normal part of an exam and commonly without grave implications. Contrast this to a CT scan of the abdomen. This is a more “extraordinary” intervention, one with potential risks (radiation exposure, exposure to potentially toxic intravenous dye) and one whose results may give life-altering information (a tumor, a need for surgery, etc.).

Let’s take these roughly-sketched guidelines—specific consent should be obtained for extraordinary procedures with unusual risks or high probability of life-altering results—and take a look at the Time article.

The piece is not terribly written, but it leaves out a lot of important information. That being said, we can assume that a genomic analysis was conducted of some children, and doctors puzzled over whether to give the results to the parents.

Ethics require that the parents (who are surrogate decision makers for the children) be given informed consent. The genomic analysis should not be done at all without informing the parents what we can or cannot learn from the test. Genetic predisposition to disease can be very mushy: it’s easy to see if someone has sickle cell anemia, but not so easy to see if they will develop hypertension.

For the purposes of this discussion, I’ll assume that whatever this “dementia gene” the doctors found gives the child a very strong chance of dementia at an early age. In this case, they cannot ethically withhold this information from the parents. What if there were a “maybe, sort of” predisposition? Same answer.

In fact, if the parents gave their informed consent, and the information included the uncertainties inherent in genomic analysis, they have the right to all the results, along with interpretations from a professional who understands them. If they were not given proper informed consent, the test shouldn’t have been run. A doctor who orders a test must have it’s consequences mapped out in advance, and shouldn’t be wondering after the fact what to do with the data.

This scenario assumes an ideal collaboration between doctor and patient, where communication flows freely, where a doctor uses their expertise to guide patients’ decisions. The complex nature of medical knowledge and its potential for life-altering impact (and expense) argue against any patient being able to order any test for themselves, including a genomic analysis. The information gained from such an analysis requires professional interpretation so that people can use the information wisely. A test result that sounds horrible to a patient may in fact be insignificant, and vice versa.

There are risks to people having unbounded ability to use medical testing and treatment. For patients to agree to this important premise, we as physicians must respect their autonomy and human dignity.

“PalMD” is an internal medicine physician who blogs at White Coat Underground.

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  • JonSanders

    To generalize, people who withhold information do it for control.

  • http://www.thehappymd.com/ Dike Drummond MD

    There is a huge difference between having access to all the available information and then using it to make a high quality decision. This is especially true around the topic of the difference between a gene’s presence on an individuals chromosomes and its expression in their physiology. But let’s not use our “they won’t understand” paternalism to withhold the information. Deliver the test result and then help them understand what it means.

    I believe that physicians and other healthcare providers perform an extremely valuable role in helping patients interpret what the information means to them as a unique individual … which is very different from Dr. Google … who will list every possible risk and disaster scenario. Ideally we are trusted advisors and interpreters to our patients and they see us in that fashion.

    The big challenge here is that traditional reimbursement will not pay for this interpretation function. The test or procedure is covered … helping the patient understand is not. It has always been this way and never made any sense.

    Dike Drummond MD

  • http://www.twitter.com/alicearobertson Alice Robertson

    The FDA and CDC are run by doctors who keep information from the public under the same guise. Some make decisions (like approving vaccines, etc.) for companies they later go to work for…often making ten times what they made working for the government (and, supposedly, protecting us from information and allowing the media to create Chicken Little situations because we simply don’t have all the facts). I wanted disclosure and treatment from doctors, not protection from information or my emotions. They often plead the greater good defense of non-disclosure at work on a public (or patient) who they deem unable to fathom exactly the information they have paid the doctor to find. Ironic?

    Imagine any other contractor you pay for services who could make decisions of non-disclosure for services you directly paid for….that could get off with this type of behavior many doctors defend. Doctors….such good training…experience…and, yet, mere humans.. not God….no matter how good their intentions are they are still paid agents who should treat and teach us what the information means…not protect us from the truth. And this goes for government agencies of health.

  • LastoftheZucchiniFlowers

    I would like to know precisely which gene they discovered? There is a huge difference between a dominant Huntington’s Chorea and a Notch 3/CADASIL. In many cases, DNA is NOT destiny, though in some others – it is. I agree that today our science is WAY ahead of our culture and the ability of providers to deal with new, minimally understood (at best) genomic data. A clearinghouse must be identified – and typically the genetic counselling a patient might need after the sequencing is done (Athena Labs comes to mind immediately) is provided to the patient. (Who, since the are going to get the bill, will eventually have this information at some point).

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