Tag Archives: disorders of consciousness

The Vegetative State as an Interactive Kind

Note: This is the introduction to the draft of my dissertation prospectus.

Doctors diagnosing the vegetative state have always found themselves embroiled in scientific and ethical controversy. Over the last several decades, the diagnosis of the vegetative state has stirred the public imagination and the writings of bioethicists in a way that few other diagnoses has. Take the example of Terri Schiavo, who suffered from a heart attack in 1990 and subsequently lapsed into a coma from lack of oxygen to her brain. After months of no recovery she was formally diagnosed with the vegetative state, a condition doctors describe as a state of “wakeful unawareness”. In this state Schiavo opened her eyes and appeared to be awake but showed no clear-cut intelligent, contingent behavior in response to any stimulation or human interaction. Contingent behaviors are behaviors that occur as appropriate responses to the behavior of other people or objects e.g. if someone sticks out their hand, the appropriate behavior (in some contexts) is to shake it. However, though Schiavo didn’t show any contingent behavior she would show reflexive behaviors such as laughing or crying or randomly moving her eyes or limbs. After years of no recovery from VS her husband Michael asked the state for permission to remove her artificial feeding and hydration.

However, when videos of Terri’s wakeful behaviors were released to the public widespread outrage was provoked in response to what many people considered to be the immoral murder of a living human being. Towards the end of her life during the 2000s, the Schiavo family was convinced that she was in fact in a state called the “minimally conscious state” (MCS) because they thought she showed intermittent signs of conscious awareness, such as laughing appropriately when a joke was told or responding to a family member with an appropriate emotional display. Because the operational standards of diagnosing MCS allow for the possibility of only showing signs of conscious awareness intermittently there is a genuine epistemic question of whether Schiavo was diagnosed properly with most experts retrospectively believing she could not have been in a MCS based on her autopsy reports, which revealed extensive cortical lesioning. But the public imagination was rarely if ever aware of these nuances distinguishing VS and MCS but instead took her wakeful behavior and physical health to be a clear sign that it would be wrong to kill Schiavo by removing her artificial life support.

The Schiavo case rests at the intersection of epistemology, medical diagnosis, ethics, the law, and the norms of society at large. These issues are intertwined. The goal of this dissertation will be to systematically argue that in diagnosing the vegetative state and other disorders of consciousness (DOC) these normative issues are essentially intertwined. In other words, the epistemic certainty attached to any diagnosis of the vegetative state cannot occur outside the broader context of ethics, law, and society. I call this the Thesis of Diagnostic Interaction. The thesis says that diagnosing disorders of consciousness is not a purely objective affair in the same way it is for physicists to determine the number of protons in a gold atom. In other words, a diagnostic label such as “the vegetative state” is not a natural kind because it does not cut nature at its joints in the way the kind GOLD does. The upshot of my thesis is that the question of whether Schiavo was truly in a vegetative state cannot be answered by merely examining her brain or behavior in isolation from the cultural time and place she was diagnosed. We must look at the broader culture of diagnostic practice which itself is essentially shaped by complex ethical and legal norms and steeped in the social milieu of the day.

Interactive Kinds

Instead of VS being understood as a natural kind like GOLD, INFLUENZA, or H2O, the vegetative state can be better understood as what Ian Hacking calls an interactive kind. An interactive kind is a concept that applies to classificatory schemes, ones that influence the thing being classified in what Hacking calls “looping effects”. Hacking’s examples of interactive kinds includes childhood, “transient” mental illnesses such as 19th-century hysteria, child abuse, feeblemindedness, anorexia, criminality, and homosexuality. Interactive classifications change how the people classified behave because they are either directly aware of the classification or the classification functions in a broader socio-cultural matrix whereby individuals and institutions use the classification to influence the individuals being classified. For Hacking, interactive kinds are

“Especially concerned with classifications that, when known by people or by those around them, and put to work in institutions, change the ways in which individuals experiences themselves–and may even lead people to evolve their feelings and behavior in part because they are so classified.” (Social Construction of What, p. 104).

Hacking’s proposal that some kinds of people are interactive kinds boils down to two features. First, scientific classifications of people can literally bring into being a new kind of person that did not exist before. Call this the “new people” effect. Second, such classifications are prone to “looping effects” because the classification interacts with people when they know about the classification or when the classification functions in a larger institutional settings which then influence the individual being classified. For example, consider the diagnosis of “dissociative identity disorder” (DID) otherwise known as “multiple personality disorder”. According Hacking, DID did not come into fruition until scientists and psychiatrists began to look for it i.e. until it became an accepted diagnostic category by a group of therapists and institutions. Moreover, once the classification of DID was popularized in novels and movies, the rates of diagnosis increased dramatically suggesting that the disease had a social-cultural origin not a purely biological origin like the Ebola virus, which is an example of what Hacking calls an “indifferent kind” because the virus does not know about human classification schemes. DID is an example of a looping kind because the spreading awareness of the diagnostic classification led people to conform to the diagnostic criteria.

Making Up Diagnostic Labels

I contend that the vegetative state can also be considered an interactive kind in a similar way that Hacking claims mental illness is. There are several, interrelated reasons why this is the case.

  1. Clinical diagnosis of DOC is essentially a process or an activity carried out by finite human beings. Diagnosis does not happen at discrete time points but is an unfolding activity of humans making fallible judgments that have an ineliminable human element of subjectivity.
  2. The classification of DOC is under continual revision and varies from time and place, doctor to doctor, institution to institution. A diagnosis about the vegetative state made in 2014 simply would not have made sense in 1990 because the classificatory schemes were different, giving rise to new kinds of patients with DOC. Some doctors are more skilled at making a diagnosis than others and different institutions utilize different classificatory procedures that are mutually exclusive yet equally justified given the pragmatic constraints of neurological diagnosis.
  3. The diagnosis of DOC is prone to “looping effects” due to the emergence of new technologies which affect diagnostic practice which in turn shape the development of newer technologies. Decisions to utilize different technology will affect the diagnostic outcomes of whether someone is in a vegetative state or not. For example, whether you use behavioral bedside methods, resting-state PET, or active probe fMRI methods will give different diagnostic outcomes.
  4. The diagnosis of DOC is prone to the “new people” effect because new diagnostic categories literally create new kinds of people that did not exist prior to the creation of the diagnostic category. And since the process of diagnosis is an on-going activity, clinical neurology is continually in the process of making up new kinds of people that did not exist before. Moreover, the individuals classified are susceptible to looping effects because once classified they are changed by the classification.
  5. The creation of diagnostic categories of DOC cannot be disentangled from broader issues in ethics, the law, and society. Consciousness plays a central role in many moral theories because of its central role in defining the interests of animals and people. We do not consider entities without the capacity for consciousness to have any interests, and therefore they do not deserve our moral consideration. Thus, facts about consciousness determine our ethical obligations in the clinic. A person diagnosed with the vegetative state by definition lacks consciousness. But the criteria for this diagnosis are continually changing in ways that do not reflect pure advances in scientific understanding.

 

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Should We Ask Minimally Conscious Patients If They Want to Live?

Mo Constandi tackles this question in an excellent post reviewing the work of Adrian Owen, which I have been writing about myself.

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.”

– See more at: http://dana.org/News/Details.aspx?id=43226#sthash.2TPWLZTR.dpuf

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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.

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What It’s Like to Be Locked-In, part 3 – The Willingness to Understand

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

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Quote of the day – Depth of Processing in the Vegetative State

“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

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What It’s Like To Be Locked-In, part 2

philippevigand1

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.]

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Disorders of Consciousness Flowchart

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April 30, 2014 · 9:11 pm