Patient Autonomy vs. Medical Values
Who can best decide your medical care: you or your doctor?
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If a patient asks a doctor to perform a procedure that is within her expertise, but that she finds unethical, should she do it? If she refuses, is she imposing her values on the patient? What if the doctor knows that such a denial will mean that the patient will find less sanitary and safe means for achieving the same goal, thus putting the patient at much greater risk? Does the doctor have an ethical obligation to ensure that the patient is kept as safe as possible, even if that means performing an otherwise unethical procedure?
These aren't idle questions - not only do doctors have to face actual scenarios like the above from time to time, but the questions they raise cut right to the heart of some of the most basic ethical dilemmas which face the medical profession. There are two different but related problems to address here. The first is the balance between patient autonomy and the doctor's own values - which should take precedence? The second involves the manner in which the principle of "do no harm" should be understood and applied - is it more harmful to perform a procedure which is unnecessary and unethical, or to let the patient do it independently with greater risk of infection and death?
There are any number of ways in which a situation like this can arise. One distressingly common instance is that of female circumcision, better described as female genital mutilation. It would be very easy to find examples where a couple brings in a 9-year-old daughter to have the clitoris as well as the labia minora and majora removed (known as infibulation). If the doctor doesn't comply with the request, the parents can send their daughter on a "holiday circumcision" in which she travels abroad for the summer and has it done - without anesthesia, without antibiotics, and without a competent physician present.
One way or another, this child will receive the infibulation - the only question is whether this doctor will do it and ensure that it is as safe and sanitary as possible. Notifying the police isn't very helpful; no actual crime has been committed and if, by some chance, they prevent the circumcision from being performed on this girl, other couples will be scared away from approaching their doctors. As a consequence, more young girls may be ensured of unsanitary and dangerous circumcisions. What should the doctor do? Is it wrong for him to impose his values on this couple? Is he violating the principle of "do no harm" by refusing to perform the circumcision and allowing the it to be performed in atrocious conditions?
Female genital mutilation is certainly not the only type of situation where this can occur. There is a little known, but no less disturbing, phenomenon known as apotemnophilia - essentially, people who desperately desire to be amptuees. Although all of their limbs are completely healthy, they nevertheless want at least one amputated; sometimes this is for sexual reasons, but often it is not. Doctors won't perform amputations of healthy limbs, but this forces some to seek alternative solutions: self amputations or self-mutilations which force doctors to amputate now-ruined limbs.
Obviously such home-grown solutions are incredibly dangerous. The risk of infection or just gross error are huge and it is very likely that a number have died in the process. A doctor faced with such a patient must acknowledge that there is a good chance that, at some point, the patient will see to it that the healthy limb is removed - the only question is how. What should the doctor do? Is it wrong for him to impose his values on the apotemnophile? Is he violating the principle of "do no harm" by refusing the perform the amputation and allowing it to be performed by the patient somehow?
First, let's examine the question of patient autonomy - the idea that patients should be allowed to make decisions about their medical care and physical health unconstrained by the values of medical professionals. Certainly, doctors and nurses are sought out for the technical expertise which they have worked and studied to achieve; however, that doesn't give them the authority to impose their personal, non-technical values upon their patients, does it?
In reality, patient autonomy is not unlimited. There are a number of ways in which it is and should be restricted, all without giving in to the specter of paternalistic physicians. For one thing, patients cannot demand to be treated by non-medical means. They cannot ask doctors to prescribe and insurance companies reimburse a series of visits to a massage parlor, for example, no matter how soothing it might be.
Second, patients cannot demand treatment that is scientifically valueless. Prescribing Viagra may fall within the realm of medical treatment for certain conditions, but patients cannot demand a prescription for Viagra to treat tennis elbow because there is simply no scientific evidence that Viagra has any effect on that condition.
Finally, patients cannot demand treatment that is inconsistent with the purpose of medicine and the medical profession - that is to say, treatments that are outside the boundaries of accepted medical practice. This is where female circumcision and voluntary amputation would fall. Unlike a series of massages, both are genuine medical procedures. Unlike a prescription for Viagra for tennis elbow, it is clear that both would definitely lead to the goals that the patients desire.
But are those procedures within the boundaries of accepted medical practice? That is not a question simply of science and medicine, but rather of values and ethics as well. This makes it much more difficult to answer definitively and, for some, opens an unacceptable door to too much variability in the potential answers between different physicians. Doctors may honesty disagree over whether this or that procedure is acceptable medically - so why should we leave the decision to them?
But if we don't leave it to them, to whom should the decision be given in their place? Indeed, perhaps the very possibility of variation and the lack of a total monolithic response is exactly why allowing doctors to decide may work. If patients are unable to find a single doctor willing to perform the amputation or circumcision, despite the variations in ethics and values those doctors have, then that serves as prima facie evidence that the procedure is, indeed, outside the boundaries of acceptable medical practice. Thus, even though the patient's autonomy is being limited by the values of the doctors, it is not occurring in an unacceptable or unethical manner.
This still leaves the question of whether it would be better ethically to perform procedures like voluntary amputations for apotemnophiles or female circumcisions in order to ensure that they are done safely rather than allow them to occur in conditions which would lead to even worse results. Doctors are supposed to "do no harm," but when faced with a no-win choice like these, which choice does the "least" harm?
It seems to come down to a conflict between deontological and teleological ethics. We believe that we have a duty (deontological) not to do something which causes harm - that would lead us to say no, regardless of the consequences. On the other hand, we also believe that we should make the choices which lead to the best outcomes (teleological) - that would suggest we do the amputation or the circumcision.
Duty pushes us one way while Consequences push us another (because we seem to be just as or nearly as culpable, morally, for what we allow to happen by failing to act as for what we cause to happen when we do act). Which path we take will depend very much upon which of the two (duty or consequences) we regard as more important in our ethical universe.
Of course, things aren't entirely that simple. It is possible to refuse to do the procedure for teleological reasons as well. Why? Because there are other consequences to take into consideration besides the immediate fate of the patient undergoing the circumcision or amputation. If we perform the procedure, aren't we saying "this is OK"? Aren't we encouraging people to do it who might otherwise have refrained because of social pressure? That is just as much of a risk as the idea that some will avoid doctors because of the police getting involved.
I would refuse to do these procedures for very much those reasons - there is, I believe, both inherent and pragmatic value in holding a line against certain actions, even if the short term consequences of such a stand are unpleasant and brutal. There are some things which we must simply say "This is not OK and I won't participate or help in any fashion, even if by doing so I might make the process less painful for those involved."
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