In February 1990, 26-year-old Terri Schiavo had a massive heart attack that left her with severe brain damage. She fell into a coma for two-and-a-half months, after which she was diagnosed as being in a persistent vegetative state. She could not communicate, and her family members disagreed strongly about whether to remove her feeding tube and let her die or maintain nourishment in the hopes she might someday wake.
What if instead of asking others, doctors could have found a way to communicate with Schiavo, as well as the hundreds of thousands of other less-than-conscious patients currently in care? Would it be ethical to ask someone with brain damage whether to pull their own tube? How would they know when to ask?
These ethical puzzles have become a bit less rhetorical, as researchers have come up with effective ways to ask very simple questions of some of these patients.
Detecting hidden signs of consciousness
Making decisions about a patient’s level of consciousness has several difficulties. First, there is a problem with diagnosis and prognosis. Vegetative patients appear to be completely unresponsive and are assumed to lack conscious awareness. Minimally conscious patients have some awareness, but it is impossible to know exactly what they are experiencing, or to determine what mental abilities they may have.
It's hard even for experts to distinguish between the two conditions, and it is currently thought that around 40 percent of such patients may be misdiagnosed. In general, minimally conscious patients are more likely to improve than those diagnosed as vegetative, but some of the latter do later progress to minimally conscious. Of those who do show progress, it is impossible to predict if they will improve further, or to what extent to they might eventually recover. [See: Uncovering Awareness: Medical and Ethical Challenges in Diagnosing and Treating the Minimally Conscious State]
Techniques such as functional magnetic resonance imaging (fMRI) and electroencephalography (EEG) are beginning to help doctors diagnose consciousness disorders more accurately. Pioneering their use to study brain function in people with consciousness disorders are Adrian Owen at the University of Western Ontario, and Steven Laureys at the University of Liège in Belgium.
In 2006, Owen, Laureys, and their colleagues reported that they had used fMRI to detect signs of conscious awareness in patients diagnosed as being in a vegetative state. They now estimate that at least one in five patients given a diagnosis of being in the vegetative state are actually minimally conscious.
“We didn’t think any of these patients would have much brain function at all, let alone consciousness,” says Owen. “It’s very likely that the number is even higher than [one in five], because the methods we’re using are still pretty crude. We’ll probably detect signs of consciousness in even more patients as our methods get better and more sensitive.”
The right to make your own decisions
Patient autonomy—or enabling patients to make their own decisions—is another goal—and question. Vegetative and minimally conscious patients are uncommunicative, and in most cases they don't leave behind declarations of intent, leaving family members to make end-of-life decisions based on assumptions about what they would have wanted.
Owen and Laureys have found a way to communicate with some of these patients, by posing questions to them as they lie inside a brain scanner. They ask patients to envision one of two scenarios, one if they mean to say "yes" and one for "no." This raises the possibility of enabling these patients to make their own end-of-life decisions, but it also raises more ethical dilemmas. A big one: Should we even ask these patients if they wish to remain alive or die?
“That’s the question on everybody’s mind,” says Owen, “but it’s probably not appropriate to ask until we know what we will do with the answer. If a patient answers ‘Yes, I want to die,’ we still don’t have a procedure for allowing that to happen.” Most countries lack euthanasia laws; in those that do have them—such as Belgium and Switzerland—the vast majority of requests for euthanasia come from cancer patients; the laws are rarely, if ever, used in the context of patients with consciousness disorders.
Owen is collaborating with neuroethicist Judy Illes of the University of British Columbia to address these issues. With funding from the Canadian Institutes of Health Research, they are focusing on how these new technologies can provide information about such patients, how the tools could be incorporated into healthcare systems, and what they mean for patients, their families, and society.
“The question is how we can use this technology most beneficially,” says Illes, also a member of the Dana Alliance for Brain Initiatives. “It’s tempting to ask about end-of-life decisions, but that’s probably inappropriate. I think one of the best questions to ask is ‘Are you in pain?’ because that’s something we could respond to immediately.”
Patients could, she adds, also be asked about how their daily lives might be made more comfortable and enjoyable. “We might ask about their preferences for food or entertainment. Something that seems trivial to you and I may be super-important to somebody who is unable to do anything except lie in their bed.”
What is it like to be minimally conscious?
For Laureys, the big question is ‘What is it like to be minimally conscious?’ Many patients with consciousness disorders have traumatic brain injuries that affect the frontal cortex, which is involved in high order cognitive functions such as reasoning and decision-making, and it is therefore unclear how intact their mental abilities are. “Questions like ‘Do you want to keep on living?’ are the more complicated ones,” says Laureys. “We need to document their cognitive impairment and decide whether or not they’re competent to answer.”
To this end, Owen and his colleagues are developing a battery of neuropsychological tests that could help to determine patients’ cognitive abilities. “If we can demonstrate that a patient can reason then we’d be well on the way to showing they have a normal cognitive profile, and that’s a big step up from being able to answer ‘yes/no’ questions,” says Owen. “This wouldn’t solve the end-of-life problem, but it would give us more confidence about a person’s competence to make those sorts of really difficult decisions.”
Owen and Laureys both stress that we mustn’t assume that patients would rather die than live in a minimally conscious state. Laureys and his colleagues recently surveyed 91 patients with locked-in syndrome and found that more than half said they were relatively satisfied with their quality of life. Locked-in syndrome is not a consciousness disorder—patients are fully conscious and, although unable to move or speak, can communicate with eye movements.
Nevertheless, the findings “taught us that we mustn’t judge a book by its cover,” says Laureys. “Many of the patients told us they were happy, but there were patients who asked for euthanasia and we cannot just ignore that.”
“We’re not working with certainties,” says Laureys. “It’s about probabilities and the chance of recovery, and families deal with these issues differently. For some, just seeing a smile is enough for them to decide to keep going. These decisions come out of love, and we should be careful [how we] judge them.”
Implications for health care
Many patients are kept alive for decades, even as it is unclear whether or not their condition might improve. The ability to make accurate diagnoses and predictions about outcomes would play an important role in such decisions, and would help doctors determine how best to allocate limited health care resources.
“Does money have any role to play in the management of these patients? I personally think it does,” says Julian Savulescu, director of the Oxford Centre for Neuroethics. “I also think that it’s the most under-discussed and over-neglected ethical issue in this whole debate.”
For Savulescu, one of the biggest questions is whether or not life is worth living in such a state. He argues that undue moral significance is placed on evidence of consciousness, and that there may be an even stronger moral reason to withdraw treatment from those patients in whom higher cognitive functions are relatively intact.
“The end-of-life question is certainly the first one I would ask,” he says. “But first of all you have to ask how competent are they to answer? If you can find what life is like for them and what their reasons are, then you can put some weight on that answer and I think you should respect their expressed desire.”
Savulescu points to a landmark legal case involving a 52-year-old British woman who went into a minimally conscious state in 2003 following a viral encephalitis infection. In 2007, the woman’s family applied to have her feeding tube removed, arguing that she would not have wanted to live being so dependent on others, but last year the high court judge presiding over the case ruled that she should be kept alive, setting a precedent for future applications to withdraw treatment from such patients.
“Many people think that just identifying consciousness is enough reason to keep someone alive,” says Savulescu. “These legal judgements are based on a very conservative pro-life bias that I think is unsustainable, because we just can’t afford to keep all these patients alive in a public health system.”
Inevitably, modern technology will advance to a point at which it can provide detailed information about these mysterious conditions. Such information will not answer these ethical dilemmas. It will, however, put many patients, their families, and their doctors in a better position to make informed decisions. If societies come to consensus on these issues now, they will be better prepared when the techology comes online. Cultural and religious differences influence such decisions, too, and must be taken into account.
In 2008, Illes and her colleagues convened a working meeting on Ethics, Neuroimaging, and Limited States of Consciousness, which set out some recommendations for how societies might deal with these issues. The ultimate goal of their current work in this area is to produce guidelines that are generalizable to all healthcare systems.
“This will be a hot topic in any cultural or political system,” says Illes, “and these are questions that have to be asked and answered thoughtfully and respectfully in an empirical, evidence-based way.”