Julian Sheather: Autonomy and the right to refuse life-sustaining treatment

The recent case of a young Jehovah’s Witness in a sickle cell crisis refusing essential blood products and being allowed to die confirms what should by now be widely known: a competent and informed adult has a right to refuse medical treatment even where the refusal will result in his or her death. Although there were some concerns that the young man’s choice was being influenced by his mother, also a Witness, an independent doctor confirmed that he had capacity and was making a free choice. A clear restatement then of established law: outwith mental health legislation a doctor providing treatment in the face of a competent adult refusal is effectively assaulting the patient. As Lord Donaldson stated in an influential judgment Re:T:

An adult patient who…suffers from no mental incapacity has an absolute right to choose whether to consent to medical treatment… This right of choice is not limited to decisions which others might regard as sensible. It exists notwithstanding that the reasons for making the choice are rational, irrational, unknown or even non-existent.

Reports of the young man’s death point to the distress of the treating team and they are hardly surprising. Here is a young man who has no wish to die, who can be saved by a simple procedure, but who has put his commitment to his religious beliefs before his life. The refusal of blood products by Jehovah’s Witnesses is based on the interpretation of passages from the Bible, from Acts: “Abstain from fornication…and from what is strangled and from blood,” and from Genesis: “Only flesh with its soul—its blood—you must not eat.” That one young man will die because of readings of these passages while a patient in a neighbouring bed without the same faith might make a full recovery brings home powerfully what is at stake in Lord Donaldson’s “absolute right” to choose.

The right that Lord Donaldson refers to is sometimes described as an autonomy right. Anyone with even a passing interest in medical ethics in recent years will be familiar with the rise and rise of patient autonomy—first among equal bioethical principles and in the vanguard of the assault on medical paternalism since the mid-twentieth century. Lord Donaldson implies however that a “competent” adult may make a decision that will end his life for reasons that are “rational, irrational, unknown, or even non-existent.” The right to make decisions based upon long-standing religious commitments is one thing; the right to discard our lives for reasons that are “non-existent” is, to put it mildly, a very unusual “right” indeed.

The word autonomy is from the Greek for self rule. Originally a political term referring to the self-rule of city-states the term was extended in the eighteenth century to refer to individuals: to be autonomous is to be a self-governing individual. Autonomy so understood owes its contemporary pre-eminence in part to two of the most influential thinkers of deep modernity, Immanuel Kant and John Stuart Mill. Self-rule has two aspects, the self and the rule, and in its more Kantian formulation refers to the ability of an individual to be governed by self-chosen rational laws. As Onora O’Neill puts it, “morality requires a person to assume responsibility for his or her choices, actions and decisions and to act on the basis of informed reason and autonomously held, principled commitments.” Despite resistance it is probably fair to say that in its more popular uses the concept of autonomy has come to focus far more on the “self” than on the “rule.” In place of the freedom to impose upon ourselves universal laws to guide our behaviour comes the freedom to do whatever we will—to act on any impulse whatsoever—with the one proviso that it respects other people’s freedoms to do the same thing.

Looked at from this deeper history, Donaldson’s “absolute right” looks less and less like an autonomy right: the only requirement it invokes, beyond the capacity to choose and the absence of external coercion, is the requirement to be left alone. It seeks instead to create a space in which individuals are at absolute liberty to pursue their private ends, howsoever irrational, provided they do no direct harm to others. In brief it looks much more like a privacy right—a right to non-interference.

It may be that the star of autonomy is on the wane in bioethics, or just stepping down slightly from its pre-eminence. It is difficult to imagine it being replaced by a renewed paternalism—few are calling for that. Doctors may agonise over a young man’s decision to decline life saving treatment on the basis of religious beliefs—good law can make uncomfortable medicine—but a respect for an adult’s free and informed choice will remain at the core of medical practice. Morally more challenging is the idea that adults can throw away their lives on a passing whim, can allow themselves to die, in Lord Donaldson’s formulation, for no reason at all. Although I cannot recall a single occasion of someone having done so, such an event must surely signal the breakdown of the concept of autonomy itself—here is no internal rule, only an external defence of content-less private liberties.

Julian Sheather is ethics manager, BMA. The views he expresses in his blog posts are entirely his own.