Imagine for a minute — or even for a few seconds — that your working mind is trapped in a body that can’t respond to a doctor’s voice or a spouse’s touch. You are, in essence, a prisoner within your own brain.
I think that could be torture. Others don’t.
What I’m referring to here is the plight of a subset of people diagnosed with a condition known as persistent vegetative state who are actually trapped in this way.
The persistent vegetative state was initially described nearly 50 years ago by Bryan Jennett and Fred Plum as “the absence of any adaptive response to the external environment [and] the absence of any evidence of a functioning mind … in a patient who has long periods of wakefulness.” It is estimated to affect 10,000 to 25,000 adults in the United States alone. It came to public attention most prominently during the controversy surrounding Terri Schiavo after she collapsed in February 1990. Most cases are thought to be irreversible.
Over the past 15 years, however, diagnostic and technological advances in medicine’s approach to patients who appear to be in a persistent vegetative state have prompted some experts to believe that some of them may actually be in what’s known as a minimally conscious state, a condition that is potentially reversible.
Ethicist Joseph Fins raised this possibility in his seminal book “Rights Come to Mind,” published in 2015. In it, he discussed the potential for deep-brain stimulation to treat such misclassified individuals.
In another scientific breakthrough, British neuroscientist Adrian Owen and his colleagues have pioneered the use of functional magnetic resonance imaging (fMRI) in patients who appear to be in persistent vegetative states. They connect such patients to an fMRI machine, ask them to think of playing tennis if they wish to answer in the affirmative or imagine walking inside their homes if they wish to answer in the negative, and then ask them dichotomous and choice-based questions as the fMRI records blood flow patterns in their brains. The researchers then compare their patterns with those of healthy subjects.
In this way, Owen and colleagues have convincingly demonstrated that a subset of individuals in persistent vegetative states have meaningfully functioning minds — even as they remain completely unable to engage in other forms of volitional communication or behavior.
These discoveries have been largely heralded as good news by patients’ family members, neurologists, and advocacy groups. The logic runs like this: If individuals in pseudo-persistent vegetative states can communicate, even in this rudimentary manner, then there is justification for continued care and hope for further recovery.
As a bioethicist, I fear that this optimism may be blinding us to a genuine moral horror: being trapped in this way may be a form of unwitting medical torture.
Owen and his team have been able to ascertain that some of the patients they have “communicated” with are not in pain. They also raise the prospect that in the future these individuals may be able to express autonomous decisions that guide us in their care — including whether they wish to continue living trapped inside their brains. That input is certainly an appealing prospect.
But what about those who cannot be reached at all? What if there is a subset of patients in pseudo-persistent vegetative states who are not able to communicate even through fMRI or potential alternatives like functional near-infrared spectroscopy but who nonetheless remain fully conscious in a continuous existential limbo?
The prospect of a disembodied human brain, what some have called a “brain in a bucket,” has deeply troubled physicians and ethicists for generations. The risk of trapping a conscious, sentient being in a sensory- and communication-deprived state has been used to argue against experiments in brain transplantation and against the creation of animal-human hybrids containing human brain tissue.
The notion of being forever a prisoner with one’s own thoughts is ghastly to many people, and arguably rightly so. Yet patients in persistent vegetative states who are conscious but sealed off from the world — especially those who cannot be reached in any way — may endure in precisely such torment. I am concerned that many experts and advocacy groups remain blind to this potential nightmare.
The discovery that some patients may be trapped in this way, of course, is not the problem. Owen and colleagues deserve plaudits for their work in contacting those who can be reached. The problem, and the underlying moral challenge, is the likely existence of conscious but unreachable patients.
In an ideal world, all individuals would complete advance directives while they were neurologically intact, and through them express whether they would want life support to continue if there was a possibility they were conscious but fully trapped. But even this approach to the problem is not without its ethical pitfalls: Patients who become neurologically impaired often accept a life with more limitations than they had anticipated they would have accepted when they were in good health, a phenomenon known as bargaining down. And, of course, advance directives are unlikely to reach a universal saturation point any time soon.
So what we are actually asked to decide, in cases where a patient’s wishes are unknown, is how to balance the prospect of contact via fMRI, or even recovery, against the possibility that the patient is trapped incommunicado in a persistent vegetative state and suffering psychological torment for years. That is no easy choice. But it is also not clear that the default should be preserving life, since it comes with the risk of perpetuating torture.
We could, of course, defer to majority will. Experts could ascertain whether the majority of people would prefer to remain alive with hope for contact and recovery, even if there was some possibility they would instead endure the horror of being trapped indefinitely, and then impose the majority’s choice as the default. Or we could adopt a principle that always favors the preservation of life if a patient’s wishes are unknown, as is favored by certain religious traditions.
I am troubled by both of these approaches.
Preventing torture and extreme suffering is not merely a fundamental principle of our society’s notion of justice, but also an overriding one. As civilized people, we have drawn a red line against torture, rejecting its use to punish military enemies or to deter crimes. We don’t permit it even when doing so might secure information that would save many lives.
So why carve out an exception here merely because the torture is inflicted subtly through life-sustaining measures and meted out with good intentions? Should the risk-benefit analysis favor preventing “brains in buckets,” even if that includes terminating life support or facilitating death?
Answering such questions is still far off. What we first require is awareness: recognizing that what has been heralded as a medical miracle might also prove the unmasking of a moral calamity. Our desire to help patients in persistent vegetative states by preserving their lives at all costs is actually rendering some of them grave psychic harm.
Jacob M. Appel, M.D., is the director of ethics education in psychiatry at the Icahn School of Medicine at Mount Sinai.