Bioethics, healthcare policy, and related issues.
A theme running through many of my posts is the patient-centered ethic of care: patient autonomy as the pre-eminent ethical principle, and patients’ values as definitive of the ends and goals of medical practice. This conflicts with a paternalistic notion of care, of course (and in doing so is hardly unique in today’s ethical climate). But it also conflicts with any “exceptionalist” medical ethic, that is, any claim that the ethics of medicine somehow take precedence over individuals’ rights or values because medicine, as a unique and traditional profession, has an “internal ethic” that trumps the ethical claims of mere patients, or of society. I am not the only person to hold such positions, though my views on them are probably further out on a limb than most people’s. However, I also believe these views impinge on a proper understanding of the factual ground of medical practice as well.
Obviously, medical science just is what it is – moral principles do not change the facts of the case (even if they influence which facts are sought by researchers, or acted on by clinicians). But medical practice, even more than most technological practices, operates on a highly value-laden vision of scientific fact, and nowhere more so than in the concept of the “definition of disease”. To traditionalists, nothing could be simpler: disease is whatever conflicts with “health”, and “health” can be identified in some sort of “I-know-it-when-I-see-it” natural law fashion. (More recently, the notion of “normal species functioning” has emerged as a “scientific” definition of health.) To critics, the “obvious” conception of health and disease is fraught with imposed meanings: not merely what kind and range of conditions or functions we take to be “normal”, but even what conditions are recognized at all. (The history of women’s depression, ADHD, and homosexuality are cases in point. “Drapetomania” – the pathological inclination of American slaves to run away – is a tragically hilarious example of socially-constructed disease, and likewise Tris Engelhardt’s celebrated paper on “the disease of masturbation” is a classic on the subject.)
For the most part, this debate has been a conceptually important, but in practice marginal, bywater of bioethics. It matters a great deal what diseases are recognized as candidates for treatment, but, with the exception of certain controversial psychiatric conditions (notably homosexuality), those determinations have been imposed by insurance companies, not derived by philosophers of medicine. The issue is coming to the fore today, however, in high-profile ethical controversies with distinct practical impact.
MSNBC reports Catholic opposition to laws requiring provision of full information and treatment options, regarding emergency contraception, to rape survivors treated in hospital emergency rooms.
HARTFORD, Conn. – A growing number of states are considering laws that would require hospitals to provide emergency contraception to rape victims, drawing criticism from supporters of the Roman Catholic Church, which likens the morning-after pill to abortion. . . .
Connecticut’s victim advocate lobbied against the proposal, calling it an assault on religious freedom. His testimony before the General Assembly prompted the state’s lieutenant governor to call for his resignation.
“I see this for what it is. It is not a victims’ rights issue. It is not a victims’ services issue,” said James Papillo, a Catholic deacon. “The issue is an attack on the Catholic institutions.”
At the direction of the state’s archbishop, Connecticut’s four Catholic hospitals established in January a policy of not prescribing Plan B if a rape victim is ovulating or one of her eggs has been fertilized. The policy was modeled after one in Peoria, Ill.
“We believe that rape victims deserve compassionate and competent medical care,” said Deirdre McQuade, director of planning and information for the Secretariat for Pro-Life Activities at the U.S. Conference of Bishops. “But we disagree on what proper medical care is.”
Obviously, the opposition to EC stems from the Catholic church’s opposition to sexual autonomy generally, in particular regarding pregnancy. But if we are to take these comments at face value – if they are more than mere precepts for the unilateral imposition of religious beliefs on others – then that position incorporates a certain vision of healthcare, encompassing not just what determines “good” or “moral” medical care, but what medical care itself consists in.
To be sure the quotes above are somewhat ambiguous. When Papillo states that “I see this for what it is . . . an attack on the Catholic institutions”, he may be construing the issue in religious terms. (Which is partly why his short-lived official stance was so shocking – he abandoned his role as advocate for patients and took an explicitly religious stance against provision of healthcare services.) Similarly, when McQuade refers to “proper medical care”, that may mean either morally proper (from a Catholic point of view) or technically proper (from a medical point of view). But to give both these speakers the benefit of the doubt, they appear to be citing some absolutist vision of healthcare itself – and not idiosyncratic religious views – as grounds for their positions. Thus, Papillo claims (whether or not convincingly) that refusal of emergency contraception is in fact his role as a patient advocate, and that the desire for it “is not a victims’ rights issue [or] a victims’ services issue” because those services are not in fact part of healthcare properly conceived. Thus also, McQuade asserts (again, dubiously) that emergency contraception is not part of “proper” medical care as rightly understood by anyone, and not merely from a Catholic point of view.
If this is true – and again assuming an attempt in this case to address the issue on rational grounds – we are faced with a debate not over the morality of emergency contraception per se, but over the question whether it is in fact a reasonable part of healthcare as it should be practiced. (In other words, understanding Papillo’s and McQuade’s positions this way, it would be possible to conclude that EC is a moral practice but that medical practitioners should not, or are not required, to provide it, because even though moral it is not properly part of their professional duties.) Here the definition of disease, or more exactly the definition of a properly-treatable medical condition, defines the obligations of professional healthcare providers in a way that directly impacts the availability of services desired by patients. The parallel with pharmacist refusal of sexual-healthcare services is close: in those cases, though the pharmacists’ refusal is grounded in an idiosyncratic (usually religious) moral perspective, opponents’ criticism of “conscience clauses” is grounded in a claim that provision of reproductive healthcare services is an integral part of healthcare broadly, and thus of healthcare providers’ professional obligations. Again the definition of “properly-treatable medical condition” serves as a source of the definition of the provider’s professional role.
I suspect these issues will have to be resolved from that perspective – that the only effective counter to attempts to place barriers in the way of patient access to care is to make an argument tightly linking professional obligation to an expansive conception of the goals and ends of healthcare arising from patients’ need, not from some external (still less unilateral) definition of healthcare. And that requires, among other things, doing away with the old absolutist definition of disease, and refocusing not just healthcare ethics, but healthcare as a concept and a practice, on patients’ needs as the touchstone of all relevant definitions.
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