Respect Patients’ Choices to Self-Medicate
Physicians are required to respect their patients’ medical
choices, even when patients make choices that would undermine their
health or wellbeing. The doctrine of informed consent requires that
physicians respect all competent patients’ decision to refuse treatment
and inform them about all relevant treatment alternatives. This means
that physicians are not permitted to deceive or coerce patients or
perform any medical procedures without a patient’s consent. In most
cases, public officials also respect people’s self-regarding choices
about their bodies and health even if their choices are dangerous. For
example, officials do not legally prohibit people from getting bad tattoos, drinking alcohol, refraining from exercise, free-solo mountain climbing, becoming obese, or working as commercial fishermen even though these choices are often imprudent, dangerous, or unhealthy.
Yet for intimate and personal bodily choices that involve
pharmaceuticals, physicians and public officials prohibit patients from
making self-regarding medical decisions about their own bodies. In Pharmaceutical Freedom (forthcoming)
I argue that patients’ rights to make important and intimate medical
decisions don’t lose their moral force when patients leave their
doctors’ offices. Patients have rights of self-medication as well.
Rights of self-medication refer to the rights to purchase and use
unapproved treatments, prohibited drugs, and pharmaceuticals without a
prescription. Existing premarket approval requirements for new
pharmaceuticals and prescription drug laws violate patients’ rights of
self-medication. Instead, public officials and private healthcare
providers should certify drugs and provide information about the risks,
side effects, and benefits of using drugs. They should not act as
gatekeepers for potentially beneficial therapeutics.
Physicians and officials adopted the doctrine of informed consent
relatively recently. Patients haven’t always had the legal authority to
choose or refuse a recommended course of treatment. Legal protections
for patients’ rights to consent to medical care developed throughout
the twentieth century after courts found that performing medical
procedures against a patient’s wishes was a form of assault. Yet medical paternalism persisted
as recently as the 1960s; for example, researchers in one study found
that almost ninety percent of oncologists reported that they routinely
withheld cancer diagnoses from patients, and some substituted
alternative diagnoses. Today patients and physicians recognize that
paternalistic deception and medical battery are morally unacceptable.
The rejection of medical paternalism over the course of the twentieth
century was an ethical triumph for the healthcare profession.
Unfortunately, as patients gained the authority to make medical
decisions in clinical contexts, they lost the authority to make medical
choices with respect to drugs. In the nineteenth century,
people recognized that patients had rights of self-medication. Yet in
response to a series of devastating drug disasters throughout the
twentieth century, including the deaths caused by use of Elixir Sulfanilamide in the 1930s and Thalidomide
in the 1960s, public officials implemented safety and efficacy testing
requirements and prescription requirements for therapeutic drugs.
Initially these regulations aimed to prevent adulteration, inform
patients, and make self-medication safer and more effective. But
existing pharmaceutical regulations prevent self-medication entirely in
cases where a patient’s judgment about whether to use a drug departs
from her physician’s judgment or a regulator’s.
For the same reasons that the rejection of medical paternalism in
clinical contexts has been such an achievement over the past century,
the increasing acceptance of paternalistic pharmaceutical regulations
has been an injustice. The same moral considerations in favor of
respecting patients’ rights to make treatment decisions weigh against
the paternalistic pharmaceutical regulations that developed during the
same time period. And existing policies that prohibit self-medication
cannot be justified without undermining these justifications for
informed consent.
Specifically, the doctrine of informed consent is justified by an
appeal to three kinds of moral considerations. First, a practice of
respecting medical autonomy likely promotes good health outcomes on
balance by fostering greater trust between patients and health workers
and protecting patients from abuse. Second, patients are generally in a
better position to know whether a treatment decision is in their overall
interest even if physicians are in the best position to know how a
decision will affect a patient’s health. Third, and most importantly,
people have bodily rights and rights to make intimate and personal
decisions even if those choices are unhealthy or imprudent.
These three kinds of considerations, medical outcomes, overall
wellbeing, and patients’ rights, are also reasons to support patients’
rights of self-medication. Consider first the claim that respecting
patients’ choices is likely to have good health effects on balance even
if it means that in some cases patients will make unhealthy choices.
Similarly, even if in some cases patients would make unhealthy choices
when exercising rights of self-medication, rescinding prohibitive
pharmaceutical regulations might nevertheless have good health effects
on balance. For example, existing approval requirements harm patients’
health in two ways—by deterring innovation and by delaying access to potentially beneficial therapeutics.
Even though some unapproved drugs are genuinely dangerous, it is also
dangerous to enforce policies that undermine drug development in light
of the ways that pharmaceutical innovation has increased income and life expectancy over the last century. And while people may consent to use dangerous drugs, they cannot consent to policies that cause them to suffer or die while waiting for potentially beneficial treatment.
The public health case in favor of prescription requirements is also
weaker than it may initially seem. Prescription requirements raise the
price of obtaining treatment, which could prevent people from accessing
necessary drugs like birth control or inhalers because it is
prohibitively expensive to obtain a prescription. Prescription
requirements may cause people to take more medical risks than they would without a physician’s endorsement of their choices. For example, people may be more likely to use addictive opioids
if the drugs were prescribed by a trusted physician. On the other hand,
prescription requirements cannot effectively prevent people who are
addicted to dangerous drugs from using drugs obtained through black
markets or drug diversion. Even in these cases public health officials should focus on “smart legalization”
paired with harm reduction initiatives and access to treatment for
addiction instead of a prohibitive and paternalistic approach to drug
use.
It is unlikely that providing patients with unrestricted access to
pharmaceuticals would have good health effects in all cases though.
After all, just as the doctrine of informed consent entitles patents to
refuse life-saving treatment, rights of self-medication would give
patients access to drugs deadly drugs. But like rights of informed
consent, even if rights of self-medication did not promote people’s
health in all cases, public officials and physicians should not narrowly
focus on promoting health anyhow. Rather, physicians and officials
should focus on the “whole patient,” not specific medical conditions,
meaning patients’ overall wellbeing should take priority over medical
outcomes. And since competent and informed adult patients are generally
the experts about their overall wellbeing, physicians and officials
should defer to them about their treatment. Prohibitive pharmaceutical
regulations deprive patients of this deference and thereby prevent them
from acting in their interests by forcing them to comply with
regulators’ and physicians’ judgments about what they should do.
For example, when officials at regulatory agencies such as the Food
and Drug Administration consider approval for a new drug, their decision
is informed by a judgment of whether the risks and side effects
associated with the drug are acceptable in light of the drug’s benefits.
But whether a drug is acceptably risky is not a medical or a scientific
judgment – it is a normative judgment that may vary from person to
person. Even when officials are medical experts they are not experts
about people’s values. This is why public officials cannot effectively
determine whether the risks of a drug outweigh the benefits for an
entire population, as all people have different values in addition to
different medical conditions.
Similarly, physicians are also poorly equipped to know whether a
treatment is in a patient’s overall interest when they prevent patients
from using prescription drugs.
Imagine a patient who decides that it is in his overall interest to use
a prescription stimulant as a cognitive enhancement. The prescription
drug system empowers his physician to override this judgment on the
grounds that the drug is medically risky, even though the patient is in
the best position to judge whether the risks are acceptable in light of
the potential benefits. Furthermore, even people who are not interested
in using drugs that regulators and physicians would recommend against
may nevertheless have an interest in the freedom to do so, especially if
they judge existing policies are offensively paternalistic.
But most importantly, even if respecting a patient’s medical autonomy
wouldn’t promote her overall or medical interests, it would still be
wrong to prevent her from making decisions about her own health and
body. It is disrespectful to use force or coercion to paternalistically
prevent someone from making a self-regarding choice, especially when
that choice is an intimate and personal one. Moreover, several rights
that are widely acknowledged as especially urgent and foundational
rights, in addition to rights of informed consent, support rights of
self-medication in at least some cases. For example, patients with
progressive or terminal illnesses have defensive rights
to preserve their own lives, and approval policies that prevent them
from trying potentially beneficial therapies outside the context of a
clinical trial violate these rights.
In practice, rights of self-medication only require that patients
have legal access to pharmaceuticals, meaning that public officials are
not entitled to legally prohibit patient’s from using unapproved or
unprescribed drugs by threatening patients or their providers with legal
penalties. One may object that laws that prohibit people from providing
unapproved or unprescribed drugs do not violate patient’s rights of
self-medication. But we would not accept this conception of bodily
rights in other contexts. For example, a law that banned people from
providing abortions would restrict the right to terminate a pregnancy
even if it women seeking abortions were not threatened with legal
penalties. Officials can violate a person’s right by prohibiting others
from providing the necessary means to exercise her right. On the other
hand, rights of self-medication do not entail a right to access any
medication at low cost; they only include rights to self-medicate
without government interference.
Some people may worry that they could be harmed by a policy that
affirmed patients’ rights of self-medication, but if public officials
respected that right, not much would need to change for people who
support the current system. Public officials could still certify drugs
as safe and effective, as could private certification services.
Insurance companies could refuse to reimburse patients or providers for
uncertified or unprescribed drugs in order to incentivize safer drug
use. And patients who were uncertain about which drug to use could ask
their physicians for advice.
To the extent that officials are worried that children or people who
otherwise lack the capacity to make informed decisions may access
dangerous pharmaceuticals, some drugs may legitimately be available
“behind the counter,” which would enable pharmacists to assess a
person’s competency before providing access. Such a system could also be
used to track the distribution of deadly drugs and drugs that could be
used in crimes. Addictive drugs may also be restricted to behind the
counter access in order to enable addicts to voluntarily join registries that restrict their access.
On the other hand, respecting rights of self-medication would have
some revisionary implications. People who currently lack effective
treatment options and judge that they would benefit from a path to
accessing beneficial drugs would benefit from having more options.
People who disagree with their physicians about whether a treatment is
promising would be permitted to take their health in their own hands and
access drugs without a prescription. People would not be required to
pay a physician and a pharmacist just to access birth control, insulin,
or inhalers.
The foregoing argument for rights of self-medication also contributes to the growing chorus of arguments against the criminalization
of recreational drugs in favor of a more respectful and effective
harm-reduction approach. Rights of self-medication also include rights
to use deadly drugs and enhancements.
Though these kinds of drug use do not primarily serve a medical
purpose, the arguments in favor of self-medication appeal to the idea
that we should not focus too narrowly on medical uses and the health
effects of drugs; instead officials should consider people’s overall
wellbeing and bodily rights.
In summary, self-medication is a basic right and should be treated
like other intimate and personal bodily rights, such as the rights to
make medical decisions that are protected by the doctrine of informed
consent. It is easy to overlook the harm of existing pharmaceutical
regulations because their harmful effects are less obvious than the
vivid dangers of risky drug use. When people die because costly approval
policies deterred innovation or because a promising therapy was
awaiting approval it appears as if they died from their diseases and not
a lack of access. Yet the harms associated with pharmaceutical
regulation are actually more morally objectionable than the harms
associated with risky pharmaceutical use because informed adults can
consent to the risks of using unapproved or unprescribed drugs but no
one consents to the dangers of drug regulation.
For most patients, rights of self-medication needn’t change how they
make medical decisions. After all, rights of self-medication do not
preclude patients from consulting with physicians or using only
government-certified drugs. But if patients had rights of
self-medication they would be free to make intimate and personal
decisions about their bodies that reflected their values rather than the
values of a physician or public official. The evolution of informed
consent requirements throughout the twentieth century and recent patient advocacy movements on behalf of rights to use medical marijuana, rights to die, and rights to use unapproved therapies,
demonstrate that reform is possible. Today officials and health workers
now recognize patients’ rights to make treatment decisions. Going
forward, they should acknowledge that these rights include rights of
self-medication too.
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