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.”
Tag Archives: neuroethics
Adrian Owen (2006) recently discovered that some vegetative state (VS) patients have residual levels of cognition, enabling them to communicate using brain scanners. This discovery is clearly morally significant but the problem comes from specifying why exactly the discovery is morally significant and whether extant theories of moral patienthood can be applied to explain the significance. In this paper I explore Mark Bernstein’s theory of experientialism, which says an entity deserves moral consideration if they are a subject of conscious experience. Because VS is a disorder of consciousness it should be straightforward to apply Bernstein’s theory to Owen’s discovery but several problems arise. First, Bernstein’s theory is beset by ambiguity in several key respects that makes it difficult to apply to the discovery. Second, Bernstein’s theory of experientialism fails to fully account for the normative significance of what I call “narrative experience”. A deeper appreciation of narrative experience is needed to account for the normative significance of Owen’s findings.
This paper has gone through so many drafts. I swear I’ve rewritten it 5 times from more or less scratch. Each time I’ve tried to narrow my thesis to be ever smaller and less ambitious because I’m pretty sure that’s the only way I’m going to get this thing passed by my qualifying paper committee. As always, any thoughts or comments appreciated.
Draft of conference-length version of longer project.
Abstract: Which kinds of consciousness matter for moral status? According to welfarism, phenomenal consciousness is what matters because of its connection to sentience. A rival view is autonomism, which says that reflective self-consciousness is what matters because of its connection to rational autonomy. Recently, Suchy-Dicey (2009) used the vegetative state to argue for a hybrid view whereby welfare and autonomy both matter for moral status. Suchy-Dicey also argues that the value of welfare and autonomy is asymmetrical: a creature that was sentient without autonomy would have moral status but a creature that was autonomous but not sentient would lack moral status. I argue we should reject asymmetrical ethical dualism in favor of symmetrical ethical dualism: an entity that is autonomous but not sentient would have moral status too in virtue of the intrinsic value of autonomy.
Medically Incompetent Doctors Should Not Diagnose Disorders of Consciousness: The Sad Case of Haleigh Poutre
Politics, ideologies, or other motivations can similarly skew medical findings in the other direction, as the botched case of Haleigh Poutre reveals. This Massachusetts case, which followed on the heels of Terri’s death, involved an eleven-year-old girl who had been the subject of repeated battering and had entered what doctors believed to be a vegetative state. In fact only eight days after she had entered the hospital in a condition of unconsciousness, her doctors declared her vegetative state to be permanent. The state of Massachusetts, through its Department of Social Services, won temporary custody of Haleigh and sought to remove her from all life support. Although not the explicit motive for the state’s petition, if Haleigh died, her step-father, accused of beating Haleigh, could have been charged with murder. The department’s petition was successful in lower court and affirmed by the state supreme court. But the day after the court’s decision, it became apparent that Haleigh was not permanently unconscious; in fact, she was not even unconscious at that moment! Two years later, she has recovered some speech and also communicates through a keyboard; ABC News reported that she might be well enough to testify against her stepfather.
Louis Shephard, It it happened to me: making life and death decisions after Terri Schiavo, p. 33
What makes the bolded sentence so outrageous is that according to conventional medical guidelines a “persistent” vegetative state should be declared 1 month after injury and a “permanent*” vegetative state should be declared 3 months after non-traumatic brain damage and 12 months after traumatic brain damage.
*Many experts recommend abandoning the term “permanent” because it implies a greater degree of epistemic certainty than is warranted. What “PVS” really means is that there is the odds are stacked against recovery because of statistical patterns of patients with similar brain injuries. However, the fact that most DOC patients recover 3-12 months after injury indicates that the most accurate approach is merely to describe the VS state and then specify how long they have been in the state rather than trying to categorically predict their chances of recovery.
I had not regressed to infancy, yet, owing to my immobility, the nursing staff tended to treat me as an infant. Does anyone stop to ask a newborn whether he is comfortably installed in his or her bassinet? Nothing is worse than being taken for a baby when you are in your thirties.
I therefore tended to divide all human beings into two categories: those who were willing to understand me and…everyone else.
~Philippe Vigand, Only the Eyes Say Yes, p. 25
“In the [vegetative state] or [minimally conscious state] the EEG is by definition not flat and typically shows widespread slowing of brain rhythms. Does this mean that nothing is being processed? The answer is a definite ‘no’. A clear analogy is the emerging literature on the depth of processing of environmental input (i.e., the surgeon talking about something in the operating room) while the patient is under anesthesia with widespread EEG slowing akin to that observed in VS and MCS. By this logic it would be surprising if some sensory input were not being processed in all VS patients and certainly in all MCS patients. By extension, one might also propose that some internal thoughts are being generated in these devastating clinical states.
Indeed, the key issue from the neurologist’s perspective is whether the neurological insult, whether prolong hypoxia or severe traumatic brain injury, will leave any meaningful brain function. So, it is not clear if the key issue is ‘consciousness’ or the clinical experience with these patients per long-term recovery of ‘meaningful’ life. Of course, meaningful is as poorly defined as consciousness and herein lies the quandary.”
~ Robert Knight, (2008) “Consciousness Unchained: Ethical Issues and the Vegetative and Minimally Conscious State” The American Journal of Bioethics, 8(9): 1–2
I am absolutely paralyzed. Only my heart continues to beat and my lungs to breathe. The physical sensations — heat, cold, pain –are also very much with me. And my senses — sight, touch, hearing — are intact.
But as for movement, none. None whatsoever. It is as though my body were encased in cement, except for my head. I am no longer able to lift a finger, even to make the simplest gesture, such as scratching my ear. And though I understand, I cannot speak. I am like a well-preserved mummy, minus the bandages. I have even lost the newborn’s capacity to swallow.
My brain? It functions exactly as before!
In America, this rare condition is called locked-in syndrome. The description is apt enough, with the difference that the walls of this prison have large windows without any bars, through which all the sounds of life can enter. Those felled by locked-in syndrome rarely survive.
Philippe Vigand, Only the Eyes Say Yes: A Love Story, p. 4
[Note: this is the second installment of what I am planning to be an on-going series of posts on the phenomenology of locked-in patients as told through their own words.]