Jeremy Davis and I have a new paper out in Cambridge Quarterly of Healthcare Ethics. It’s called “Refusals and Requests: In Defense of Consistency.” In it, we argue that requests for treatment should be treated symmetrically with refusals. Here’s the explanation.
Patients refuse things all the time, even when the stakes are high. Jehovah’s Witnesses refuse blood transfusions, people refuse to be resuscitated, etc. Generally, refusals are ethically uncontroversial. Ethically and legally, people with decision-making capacity can refuse treatment, and healthcare providers are obligated to respect their refusals. This is so even when the patient is making a choice that isn’t best for her well-being. Even then, autonomy comes first. It would be wrong for the provider to override the patient’s refusal, even if the provider has a reasonable case that doing so would better promote the patient’s well-being.
In contrast, when a patient makes a request for an intervention—a drug or a procedure—the ordering of the values is reversed. In such a case, the provider is obligated to consider the well-being of the patient, thereby putting her well-being above her autonomy. This is so even if the patient is able to give valid informed consent. The fact that she knows what she’s doing doesn’t justify the lowering of her well-being, or so the thought goes.
This creates an asymmetry. In refusal cases, autonomy trumps well-being. In request cases, well-being trumps autonomy. Now, as I spent a whole dissertation arguing, we can’t assume that ethics is symmetrical. Nor can we assume that our asymmetrical intuitions are correct. We have to take a closer look case by case. What Jeremy and I want to know is, is this an acceptable asymmetry or not?
There are three options:
Reject refusals. This would create symmetry by overriding refusals, such that, e.g., the Jehovah’s Witness should be given blood. Old school.
Accept requests. This would create symmetry by holding that providers shouldn’t refuse requests because of well-being.
Accept the asymmetry. This is the status quo, and the task would be to explain how the asymmetry is justified.
We argue for (2). Importantly, this doesn’t mean we think refusals and requests should be treated identically. Instead, we mean that the ordering of autonomy and well-being should stay the same. Consider someone who refuses a life-saving blood transfusion and then also requests an assisted death. We believe, as do most people, that overriding the refusal would be a worse wrong than failing to provide assistance in dying. There are more factors that could justify denying the request, including the provider’s own autonomy. Our point is that one of those factors can’t be the patient’s well-being.
Why Allow Refusals?
Autonomy is a more recent bioethics value than well-being. “First do no harm” was added to the Hippocratic Oath in the seventeenth century, but autonomy wasn’t first recognized until the twentieth. It used to be that the physician made all the decisions about the patient’s treatment without asking the patient or even informing her of the diagnosis. Over the course of the twentieth century, patient autonomy became more recognized in the law and ethics, so now patients have the legal and ethical right to refuse any treatment.
The reason for this is that people have a right to decide what happens to their bodies, so it would be overly paternalistic to override the decision of an adult with decision-making capacity, even if the decision is one the provider disagrees with. As clinical ethicists like to say, patients have the right to make bad decisions. When people do think it’s ethically acceptable to override a refusal, it’s almost always because they believe the patient lacks capacity or the ability to act autonomously in some relevant way, and not because they think well-being trumps autonomy.
What Could Justify the Asymmetry?
Since we accept refusals, that means we reject option (1) above. Next, we consider what might explain the asymmetry to justify option (3). The most common proposal is the difference between doing harm and allowing harm. Commonsense morality says that it’s worse to directly cause harm, which is what happens if the physician assists the patient in dying, than it is to allow harm, which is what happens when the physician respects the refusal. Given this, perhaps respecting refusals is okay while respecting some requests isn’t.
We don’t think this explanation works. We’re assuming that the patient is giving valid informed consent, so it’s incorrect to treat the direct harm as a harm, or at least a wrongful harm. This is the power of informed consent. An act that would be wrong becomes ethically permissible. If Jeremy were to punch me in the face, that would be very wrong. But if we mutually consent to a boxing match, it’s no longer wrong for him to punch me.
Perhaps more importantly, the doing-allowing distinction doesn’t reorder autonomy and well-being. There might be cases where helping someone die is wrong even with consent, but the doing-allowing distinction doesn’t say this is because autonomy becomes less important or well-being becomes more important. (And not all request cases involve assisted dying.)
Negative & Positive Rights
Another approach is to appeal to the difference between negative and positive rights. A negative right is a right against interference, such as the right to free speech. This is the type of right patients invoke when they refuse treatment. They want to be left alone. A positive right, in contrast, requires assistance, as in the right to a fair trial. This is the type of right patients invoke when they request treatment.1
It’s widely accepted that negative rights are stronger than positive rights. This aligns with ethical intuitions: a physician who fails to help a patient has acted wrongly, but not as wrongly as if she did something to a patient against the patient’s will. This sounds right to us, and so explains a morally relevant difference between refusals and requests.
Although the distinction is relevant, it doesn’t explain changing the ordering of autonomy and well-being. We grant that positive duties are less stringent than negative ones and that positive duties require considering a broader range of factors, but neither of these points explains why autonomy should get priority in refusals while well-being gets priority in requests.
Jeremy and I began working on this paper in 2018, then sat on it for years because we thought that there must be another reason that we’re missing. So we kept asking people about it, and would invariably get the doing-allowing distinction and the positive-negative rights distinction as explanations. Perhaps there’s another explanation for the asymmetry, but we haven’t found it.
Symmetry Then
We conclude that refusals and requests should be treated symmetrically by prioritizing autonomy over well-being. Respecting refusals is ethically required because people have a right to decide what happens to their bodies. This is uncontroversial and the Supreme Court of Canada has endorsed it many times. As I’ve written regarding Carter,
Section 7 of the Charter says that everyone has the right to life, liberty, and security of the person, which the trial judge said that, when applied to healthcare, means “the right to non-interference by the state with fundamentally important and personal medical decision-making.”
If this is so, it shouldn’t matter whether they’re deciding by refusing treatment or by requesting it.
Still, we can’t emphasize enough that we don’t think this means that all requests should be granted. In this way, there’s an important difference between refusals and requests. There are many reasons why a provider might deny a request: it might be too expensive, the resources might be better used elsewhere, it might risk harming other people, the provider might object to it, etc. Our point is that, among those reasons, the provider can’t appeal to how granting the request would affect the welfare of the patient. Given this, a physician can refuse a request because she’s busy or the resources aren’t available, but not because the patient’s well-being outweighs his autonomy.
Ours is a theory paper. We don’t have a roadmap for how to implement this in medicine, but it would lead to some important changes. It also means that, if we’re correct, then Beauchamp and Childress are wrong that no principle of bioethics gets priority. Autonomy should.
Quick Hits
Which isn’t to say it’s the right they have! No Canadian law, including the constitution, explicitly recognizes a right to healthcare.
I appreciate your argument. It's thought-provoking. However, as someone who has been the recipient of an unwanted medical procedure, I find I have issues with your framework. You write that we should not force medical procedures on people because "autonomy trumps wellbeing." However, I am inclined to think that it is not that autonomy trumps wellbeing but that the experience of being forced into a medical procedure is (usually) detrimental to wellbeing in itself. Bodily autonomy matters because being physically violated hurts people.
We may tell doctors to act as though autonomy trumps wellbeing, but this is mostly because doctors are focused on a specific subset of wellbeing and are likely to underestimate the harm done by forcing people. "Don't force people" is therefore a deeply important rule to counteract this risk of disrespecting patients in a way that will harm them deeply and erode the doctor's own moral perceptions for future events.
If this description of the underlying reality behind "autonomy trumps wellbeing" is accurate, then the asymmetry becomes easier to understand. We must ask whether there is a need for a similar limiting heuristic for withholding unnecessary treatment. Will a patient experience the refusal as physically violating? (Probably not, though it may be frustrating). Will doctors be inclined, without this heuristic, to ignore relevant aspects of the patient's experience? (Perhaps, though I think this is also less clear and would welcome argumentation on the subject). Accordingly, while one could still argue for some sort of symmetry, its necessity is much less clear.
I strongly agree with this principle (and sorry if you addressed this in the paper... don't have institutional proxy setup on my phone) but I fear most people are likely to reject it since taking it seriously is essentially complete drug legalization.
I mean, if you really treat the cases symmetrically, then I can just show up at my doctor's office and say I feel sad I want meth/opiates/whatever and presumably he (or at least some part of the system) has a moral obligation to comply. At least provided I can demonstrate I'm aware of all the risks and am unlikely to harm anyone else as a result (eg I've got more money than I could ever spend on pharmacy priced drugs). Note that, these drugs all *do* have very substantial efficacy against depression so you can't say they aren't treating a genuine condition.
Now, maybe you'll say there is no such obligation for the system to allow this because the doctor doesn't believe that this treatment is actually in my best interest or that I'll regret it later or whatever.
But if you allow that then what's left of the principle? I mean, presumably that's exactly what is going on when a doctor wants to give some young christian science adherent an antibiotic. They believe it's in that patients best interest, if they don't have it they'll come to regret it etc etc..
Look, I'm still behind the principle, at least with sufficient hoops that require people to push forward despite dissuasion, but it's worth raising.