A bad feeling
Revulsion is not an argument; and some of yesterday’s repugnances are today calmly accepted — though, one must add, not always for the better. [...] In crucial cases, however, repugnance is the emotional expression of deep wisdom, beyond reason’s power fully to articulate it.
If I held myself to such high standards, I would tell you that I find the thrust of what I see as mainline bioethical thought to be “icky,” and from there res ipsa loquitur. However, I’d like to think that my distaste has more than mere “revulsion” behind it, and as such the matter is not so easily disposed of.
In the “standard” ethics and professionalism lectures, medical students are taught that medical ethics rest on three foundational pillars: non-maleficence (“do no harm”); beneficence (“do what’s best for your patient”); and autonomy (“act in accordance with your patient’s wishes”).
Who decides what’s best for the patient, or what constitutes harm? Logically, it should be the patient! When the stakes are high, so too should be the barriers for a physician to substitute his or her goals and values for the patient’s.
SUMS has a thriving medical ethics program, and we’ve had the opportunity to hear clinicians and medical ethicists from SUMS and from farther afield talk about ethical conundrums they’ve seen on the wards. Every presentation has shared one feature, without fail: it’s only an ethical conundrum (usually meriting a call to the bioethics committee) when the physician doesn’t agree with a patient’s choice, and has been unable to successfully use persuasion or coercion to change the patient’s mind.
This seems like a trivial observation at first. After all, why call the ethics committee to adjudicate a matter where the physician and patient are in perfect agreement (aside from rarer edge cases where this happens, usually involving experimental procedures)? It makes perfect sense!
What this means though, is that the medical ethicist has become the person to provide cover for a physician to override the patient’s autonomy. By virtue of selection bias in the cases they are asked to adjudicate, and the ever-present threat of regulatory capture, the role of “medical ethics” runs the risk of devolving into Paternalism 2.0. “We know what’s best for you, and if you don’t believe us, we’ll make you.” What’s more, when the medical ethicist is nothing more than the cudgel with which the physician forces his goals onto his patient, what claim does the ethicist then have to support his monopoly on decision-making in this sphere?
Admittedly, this image of medical ethics is a caricature. But to see the danger that lies in store, look no further than their cousins: the bioethicists.
At every turn I can think of, bioethics has established itself as the true “Ideology of ‘No.’” Whether dealing with BRCA gene testing for breast cancer susceptibility, assisted reproduction technologies, APOE4 screening for Alzheimer’s susceptibility, or “cosmetic” fetal ultrasound, mainstream bioethical opinion always seems to come down on the side of denying information to patients. Hardly the patient-empowering mindset that marked the field’s nascent days.
So why has the medical ethics / bioethics enterprise come to undervalue patient autonomy so extensively? I offer two preliminary hypotheses.
First is the fact that medical ethics and bioethics are situated in an academic-institutional environment that usually leans left-liberal (Progressive). Whether the institution makes the people, or the people make the institution, it comes out to the same thing: the setting is one that inculcates a predilection for top-down technocratic control. I think that this assessment is valid, regardless of what you think of the merits of different political philosophies.
The second one is, in my mind, more interesting. Public choice theory reminds us that bureaucrats, leaders, institutions, and their people do not exist in a world devoid of incentives and personal agendas. As an ethicist, when you say “no,” you entrench the need for your services… there needs to be someone with the authority to say “yes,” and what better way to establish your authority then by saying “no?” When you posit increasingly more complex models for evaluating ethical dilemmas — “autonomy, beneficence, and non-maleficence” just don’t cut it — you create an institutional need for someone with expertise in dealing with these complex rules to act as interpreter, and thereby increase your own power and prestige. Giving full weight to patient autonomy would undermine the need for your services.
This isn’t to say that ethicists make decisions with an explicit eye to entrenching their influence in the medical setting. It is, however, a reminder that we should always be asking ourselves: quis custodiet ipsos custodes? Who watches the watchers?
That, and the “wisdom” of repugnance is only as valid as the reasoning that supports it. Having “a bad feeling” about something doesn’t cut it when lives are on the line.