Tag Archives: bioethics

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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Vegetative State Patients as Moral Patients

https://www.academia.edu/7692522/Vegetative_State_Patients_As_Moral_Patients

Abstract:

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.

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Link – Gray Matters: Integrative Approaches for Neuroscience, Ethics, and Society

Gray Matters: Integrative Approaches for Neuroscience, Ethics, and Society is the first set of recommendations from the Bioethics Commission in response to a request from President Obama to review the ethical issues associated with the conduct and implications of neuroscience research.   Specifically the President asked the Bioethics Commission to “identify proactively a set of core ethical standards – both to guide neuroscience research and to address some of the ethical dilemmas that may be raised by the application of neuroscience research findings.”  This volume is the first of a two-part response to the President’s request and focuses on the integration of ethics into neuroscience research across the life of a research endeavor. 

Integrating ethics explicitly and systematically into the relatively new field of contemporary neuroscience allows us to incorporate ethical insights into the scientific process and to consider societal implications of neuroscience research from the start.  Early ethics integration can prevent the need for corrective interventions resulting from ethical mishaps that erode public trust in science.  Everyone benefits when the emphasis is on integration, not intervention.  Ethics in science must not come to the fore for the first time after something has gone wrong. 

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May 14, 2014 · 11:35 am

A Brief History of the Vegetative State

persononlifesupport

1.0 Introduction
Vegetative state syndrome (VS) is a rare but extremely devastating neurological disorder resulting from severe brain damage. The increasing sophistication of critical neural care has made it possible for people to be kept alive with only the barest of brain function; machines can now take over the control and regulation of basic organic functions. An estimated 13,000-44,000 Americans are currently in a vegetative state. The causes of VS are diverse ranging from traumatic brain damage such as from car accidents to hypoxia from drowning, stroke, heart attack, or drug overdoses. VS is considered a disorder of consciousness insofar as it is assumed to deeply affect conscious awareness. Hence, VS is widely described as “wakefulness without awareness” or “wakeful unawareness” (Jennet & Plum, 1972).

When most laypersons hear about VS they think about so called “persistent vegetative state” which is a term used to describe VS patients 1 month after acute injury. Persistent VS is often confused with permanent VS which is defined by the Multi-Society Task Force as a VS state 3 months after a non-traumatic brain injury and 12 months after traumatic injury. VS is often confused with brain death, which is the complete and irreversible cessation of neurological function. VS is also distinct from being in a coma, a term that comes from the ancient Greek term “koma”, meaning “deep sleep” (Fig. 1). Coma is operationally defined in terms of a complete lack of overt response to vigorous stimulation and attempts to arouse the patient. Plum and Posner define the state of coma as being

unarousable, unaware of all elements in the environment, with no spontaneous interaction or awareness of the interviewer, so that the interview is difficult or impossible even with maximum prodding (2007, p. 184).

Coma patients are still breathing and their basic physiological systems are still functioning but their eyes never open and they appear to be in a deep sleep marked by a presumed total lack of consciousness. If a patient recovers from a coma at all, they typically begin to recover after a week or two, transitioning through progressive stages starting with vegetative state and ideally moving through a continuum of minimally conscious states to either locked-in syndrome, or a full cognitive recovery.

SpectrumDOC1

Fig. 1 From (Posner, 2008).

2.0 Ancient to Modern Conceptions of the Vegetative State
The concept of VS can be indirectly traced by to Ancient Greece and the Hippocratic school of medicine (400-200 BCE), sometimes called the “Coan school” because it was apparently located on the island of Cos in the Aegean Sea. Some scholars believe that the Hippocratic school was an ancient Pythagerean-like cult that had a quasi-religious and mystical set of beliefs and initiation rights. In Ancient Greek medicine one of the terms closest to referring to what is now called the vegetative is the condition called “apoplexy”, referred to stroke or brain hemorrhage, meaning “being struck by violence”. Due to the complete lack of knowledge of how brain damage affected cognitive function, the ancient Greeks lumped many more neurological conditions under the same category than we would do now. Consider the following Hippocratic description of apoplexy

The healthy subject is taken with sudden pain; he immediately loses his speech and rattles his throat. His mouth gapes and if one calls him or stirs im he only groans but understands nothing. He urinates copiously without being aware of it. If ever does not supervene, he succumbs in seven days, but if it does he usually recovers (Clarke, 1963, p. 307)

Besides the Hippocratic writings, the most comprehensive source of Ancient knowledge about apoplexy comes from the works of Galen written between 200-150 BCE.Although Galen’s writings on apoplexy were fragmented and scattered through his corpus, his writings on the subject constitute the first medical taxonomy of the condition. According to Galen, “Apoplexy [is] a palsy of the whole body, accompanied by impairment of its leading functions” (Quoted in Karenberg, 1994, p. 87).

Since Galen, little progress in diagnosing, understanding or treating apoplexy was made in between ancient Greece and the the beginning of the Enlightenment and the birth of modern, mechanistic approaches to medicine such as William Harvey’s hydraulic model of the circulatory system. Much of this lack of progress can be chalked up to the collapse of the Roman empire, the rise of the institutions of the Church and numerous other complex social, economic, and political factors. The scholastic and highly conservative nature of medicine essentially kept the Hippocratic conception of apoplexy intact all the way up through the 17th century. For example, when we read 17 century doctor Thomas Willis’ description of apoplexy, it’s quite apparent that 17th century medicine had made little progress in the description of these complex and tragic neurological conditions. According to Willis,

The Apoplexy, according to the import of the Word, denotes a striking, and by reason of the stupendous Nature of the affect, as tho it contain’d somewhat Divine, it is called a sideration: for those that are seized with it, as tho they were Planet-struck, or smitten by an invisible Deity, fall on the Ground on a sudden, and being deprived of Sense and Motion, and the whole animal function (unless that they breath) ceasing, they lye dead as it were for some time, and sometimes dye out-right: and if they revive again, they are oftentimes affected with a general Palsie or an Hemiplegia. (quoted in Storey, C.E., 2007)

For the most part all these doctors could do is either watch the patient die or rely on the spontaneous healing powers intrinsic to the brain itself. During the Middle Ages brain damage was by necessity diagnosed on the basis of easily observable features and thus the typical neurological examination was rudimentary in nature, consisting largely on the basis of: “inspection, palpation of the pulse, and urinoscopy” (Walker, 1998, p. 157).

Until the 19th and 20th centuries, only sparse and intermittent advancement was made in the diagnostic categorization of disorders of consciousness owing to neurological damage. To give some representative examples of the slow terminological evolution, in the 17th century Thomas Willis used the term “coma” in his 1672 work De anima brutorum. In 1679 in Geneva Switzerland Theophile Bonet published Sepulchretum sive Anatomia Practica, a huge compendium of autopsy reports, 70 of which were cases of apoplexy. In the 18th century the Dutch botanist and physician Herman Boerhaave’s described the term “coma” in his lectures as follows:

It is the perfect image of a very profound sleep, like in healthy persons, due to exercise or fuddle. Therefore, there is little distinction, unless by duration. (quoted in Koehler, 2008)

Also of note, in 1898 Oppenheim distinguished between dazedness, somnolence, sopor and coma, which was one of the first modern taxonomies that systematically distinguished between different “levels” of consciousness.As we can see then, between the Middle Ages and the 20th century there was not a great deal of progress made in either diagnosing or treating apoplexy and the state of the field remained largely stagnant.

3.0 Contemporary Approaches to the Vegetative State

The modern history of the vegetative state begins with advances in EMT rescue and technology for sustaining bodily viability in the absence of normal brain function. The artificial respirator was invented in the 1950s by Bjorn Ibsen, a Dutch anesthesiologist who founded the first Intensive Care Unit. Since then, medical advances in artificial nutrition and hydration (ANH) enabled vegetative patients to live decades after the onset of brain damage without higher brain brain or evidence of awareness. The longest known case of VS is Elaine Esposito who was in a VS state for thirty-seven years. Surveys show that people perceive that living decades in this condition or ones similar to it would be a fate “worse than death” (Jennett, 1976) and most people including doctors would prefer to not be kept alive. Most patients deemed not to have a life worth living have ANH withdrawn, which is thought to release endogenous opioids and eventually lead to confusion and then coma from metabolic dysfunction.

Bryan Jennett, a British neurosurgeon and Fred Plum, an American neurologist, coined the term “persistent vegetative state” in a landmark paper published in Lancet in 1972 on April Fools Day. The paper was subtitled “A syndrome in search of a name”. The subtitle “in search of a name” is a reference to the fact that many similar descriptions of vegetative state were available at the time but none of them were broad enough to capture the vegetative state as a syndrome. For example, “Neocortical necrosis” is a term that was applied to a subset of vegetative patients but all such terminology was eventually replaced by terms that didn’t imply any particular causal etiology because of the heterogeneous causes that lead to behavioral unresponsiveness.

Extant medical vocabulary circling around at the time include the French term “coma vigil” Cairns’ term “akinetic mutism” in 1941 to describe a patient with “silent immobility”, German psychiatrist Kretschmer’s term “apallic syndrome”, Stritch (1956) discussions of “severe traumatic dementia”, Arnaud’s term “pie vegetative” in 1963, and Finnish neurosurgeon Vapalahti and Troupp’s “vegetative survival” in 1971. Most of these terms were never universally adopted for the same reason: they were over-specific with respect to the neurological damage or behavioral sequelae. Hence, because Jennett and Plum’s original vegetative syndrome was operationally defined only by a lack of behavioral responsiveness rather than any specific neurological deficit, the term started to enter the general medical lexicon and eventually made it’s way (controversially) into the public sphere due to many high-profile legal cases. Accordingly, Jennett and Plum were not the first to use the phrase “vegetative” nor were they the first to notice and describe the syndrome, but the name they chose stuck and has been in use ever since (though there is now efforts to rename the syndrome; see below). Fred Plum went on to write an influential textbook in the field with Jerome Posner called Diagnosis of Stupor and Coma, which is still in use and currently in its 4th edition (Posner et al., 2008)

The usage of the word “vegetative” to describe people with severe brain damage has always been controversial amongst the general public. One possible reaction to the term is to see it as violating the dignity of the patients by comparing their mental life to that of vegetables. But in the defense of Jennett and Plum, when they first coined “vegetative state”, they referenced the Oxford English Dictionary’s definition of the verb “vegetate”, meaning “To live a merely physical life devoid of intellectual activity or social intercourse”. This usage of the term “vegetate” can be traced back to Ancient Greece e.g. Aristotle’s talked about a “vegetative soul” that was present in all living things including humans. In this respect the term “vegetative” was always meant to be a purely descriptive term for the mental capacity of the patients but it’s hard for laypersons not to read into the term some kind of pejorative connotation.

3.1 Assessment Scales

The history of diagnosing VS and related disorders of consciousness goes hand in hand with the development of behavioral assessment scales and recovery scales. One of the original assessment scales–still in use today–is the Glasgow Coma Scale (GCS) developed by Jennett and Teasdale (1974). The GCS involves 3 dimensions (eyes, verbal, and motor). The eye dimension is graded on a 4-point scale, verbal on a 5 point scale, and motor on a 6 point scale. Thus, the highest possible score is 15 indicating normal consciousness and 3 the lowest, indicating coma or brain death. On the recovery side of things, the Glasgow Outcome Scale was proposed by Jennett and Bond (1975) and describes 5 levels of brain function ranging from coma to VS to severe, moderate, and low cognitive disability. In terms of diagnosis, the JFK Coma Recovery Scale-Revised is currently the gold standard and best validated assessment protocol for diagnosing vegetative patients (Giacino et al., 2004). It involves 6 subscales including auditory, motor, verbal, and visual components. The test is designed to use only observable responses to bedside commands and tests, which allows the test to be used cheaply so long as performed in the hands of trained experts.

3.2 Minimally Conscious State

Today the diagnosis of vegetative state has become more complex and multifaceted in order to recognize the greater heterogeneity and range of cognitive abilities of people diagnosed with the blanket term “vegetative”. Recognizing the need for a more nuanced diagnosis to distinguish patients who are largely vegetative but show intermittent and non-repeatable signs of consciousness, the term “minimally responsible state” (MRS) was introduced by the American Congress of Rehabilitation in 1995. The difference between this and coma or PVS was that MRS required the observation of something “unequivocally meaningful” to the examiner. Later, a group known as the Aspen Workgroup recommended MRS be replaced by “minimally conscious state” (MCS) to emphasize that behavioral responsiveness can occur without consciousness. An estimated 100,000 to 280,000 cases of MCS are thought to exist in the US. The current consensus is that Giacino’s (2002) diagnostic criteria is the gold standard for assessing MCS. Giacino’s definition involves 4 levels of “non-reflexive” behavior:

  • Following simple commands,
  • Gestural or verbal yes/no responses (regardless of accuracy,
  • Purposeful behavior such as those that are contingent due to appropriate environmental stimuli and are not reflexive.
  • Intelligible verbalization.

Any demonstration of these abilities warrants the diagnosis of MCS instead of VS. Currently, these assessment scales like an overarching theoretical basis and without an accepted theory of consciousness it’s unclear whether consciousness is necessary for command following or purposeful behavior, especially given the many apparent counter-examples in clinical neuroscience such as blindsight (c.f. Levy, 2009).

3.3 Famous cases

The modern history of the vegetative state cannot be told without reference to the famous legal cases that were crucial in spurning interest and research on the condition from neurologists, ethicists, and the public at large. These cases operated as catalysts for more precise diagnostic criteria as well as standardization of assessment scales that can be implemented objectively by independent hospitals.

Karen Quinley

Karen Quinley’s case is famous for its association with the right-to-die movement. Karen Quinley was 21 in 1975 when she was found unconscious after an overdose of drugs and alcohol with her friends. After 5 months on a respirator Karen was still in a vegetative state and being cared for in the intensive unit. Karen’s parents, the Quinlans, requested that her respirator be removed because it was deemed by the Catholic church an “extraordinary” medical intervention and thus its removal would not constitute euthanasia, a procedure prohibited by the Catholic doctrine. However, Karen’s neurologist objected to removing the respirator, arguing this would be tantamount to killing her. Eventually the case went to the Supreme Court of New Jersey and the judges decided that the duty to protect life was overridden by the dim prognosis of future awareness. After Karen’s respirator was removed she was still on artificial nutrition and remained alive for another ten years.

Terri Schiavo

On February 25, 1990 Teresa “Terri” Schiavo (age 26) suffered a heart attack and lapsed into a coma. After two months with no signs of recovery, Schiavo was diagnosed with vegetative state disorder (VS). After several years and no signs of recovery, her husband asked to remove her feeding tube. Schiavo’s family objected, arguing that she showed intermittent signs of awareness. Subsequent legal battles involved 14 appeals and widespread media coverage but fifteen years after Schiavo’s heart attack a judge finally ordered her feeding tube to be removed and she died three days later on March 31, 2005.

When Schiavo was diagnosed, VS had not yet been widely distinguished from what is now called the minimally conscious state (MCS), a once controversial diagnosis. MCS patients are similar to VS patients but intermittently show clear signs of consciousness such as purposive behavior but these signs often cannot be reproduced. Once MCS became an established diagnosis (Giacino, 2004), Schiavo’s family later argued in court that she was in a MCS not VS and several doctors testified to this effect. Nevertheless, the judge ruled that Schiavo was in a VS state and that her condition was irreversible.

4.0 21st Century Approaches to the Vegetative State

Investigation into VS and related disorders has exploded in the 21st century. One of the biggest developments in the field came when Adrian Owen and his team published a paper in 2006 in Science claiming to have detected residual levels of consciousness in a patient clinically diagnosed with VS. This discovery sparked intense debate about the methodology and philosophical assumptions of the study but skeptics were finally answered in 2010 when Monti (2010) did a follow-up replication with 50+ subjects. In Monti’s study they found 3 patients in the vegetative state who were capable of “willful modulation” using Owen’s mental imagery paradigm. More recently, a 2014 study published in The Lancet found at least 13 cases of residual cognitive function in patients otherwise diagnosed with vegetative state disorder

4.1 Unresponsive wakefulness syndrome

Unresponsive Wakefulness Syndrome (UWS) is a new term for VS (Laureys et al., 2010; Laureys & Boly, 2012) that is more respectful of patient dignity as well as more diagnostically accurate. Although the term “vegetative” is accurate as a medical generalization across a population of patients, the problem comes when clinicians diagnose a particular person.It’s one thing to talk about vegetative patients in the abstract but if a doctor described your loved one as “vegetative” it would be hard not to find this an frightening, alien label. Despite its pretension to be a merely descriptive term, “vegetative” has negative connotations of a life not worth living, of being “vegged out”.

Furthermore, because modern neuroimaging techniques can now detect residual cognitive function that escapes bedside assessment, it is hasty to infer a patient lacks all cognitive function until they have been systematically tested using the latest technology. The term “vegetative” is inaccurate as a blanket diagnostic label because it ignores the possibility that they will find residual cognitive function using neuroimaging and other techniques that go beyond bedside behavior. The term “unresponsive” is therefore more appropriate than “unaware” and encourages clinicians to not use a single, monolithic state to describe what is in reality a complex continuum. Even though VS is a purely behavioral diagnosis and by itself strictly entails nothing about the presence or absence of consciousness, it’s hard even for clinicians to not adopt a “clinical nihilism” towards these patients despite the very real possibility of these patients having residual cognitive function that – if expressed – would change the diagnosis. However, it’s crucial to realize that there is no logical or empirical basis for inferring the absence of awareness from the absence of a behavioral response, especially since we know through retrospective report that locked-in patients who emerged from total lock-in syndrome were often thirsty, in pain, and aware of nurses and doctors talking around them but completely unable to move any muscles. We also know from retrospective reports of patients under general anesthesia that approximately 1-2 per 1000 cases report some degree of awareness during anesthesia even though they showed no overt motor response detected by the surgeons (Sebel, 2004).

There are many reasons why someone’s awareness would not be detected by a clinical test even if was actually present (Sanders et al., 2012). If we want to hold onto the idea that consciousness as subjective experience is something we share with animals, it’s not obvious why an ability to report one’s experience is necessary to having an experience in the first place. Hence, despite the careful qualifications of the original inventors of the label “vegetative state”, the term has taken on a life of its own and now probably does more harm than good by priming people to think about consciousness as being either “on” or “off” when reality is more complicated, with VS patients as a population being heterogeneous and falling along a broad spectrum of states – not one monolithic neurological or experiential state (Laureys & Boly, 2008).

4.2 Future Developments

The future of coma science will likely involve the further implementation of advanced neuroimaging technology into the standard practice of clinical diagnosis. Already research teams across the globe are racing to build the first truly validated “consciousness-o-meter” that can be used to quickly diagnosis an unresponsive patient’s level of consciousness without relying on traditional behavioral assessment scales which rely on the subjective judgment of expert raters (Casali et al., 2013). The future will also involve the development of better brain-computer interface techniques to interact with UWS patients who emerge into locked-in syndrome, such as Sorger et al.’s (2013) real-time fMRI speller method (Fig. 2). The future will also bring new developments in therapeutic intervention to help foster neural plasticity and functional recovery using stimulation techniques like transcranial direct current stimulation (tDCS) or deep brain stimulation (Schiff et al., 2007) in addition to pharmacological interventions using anti- insomnia drugs like zoldipem (Brefel-Courbon et al., 2007).

sorgerspeller

Fig. 2 From (Sorger et al., 2013).

Conclusion

The concept of vegetative state has been loosely recognized, categorized, and discussed for thousands of years but it has only really been in the last 40 years or so that the condition has been rigorously defined and studied using the modern methods of clinical science. Ironically, the more rigorously VS is studied the fuzzier its definitional boundaries become, with most researchers now conceiving of the VS “state” as just one specific band in a continuous, multidimensional spectrum of cognition function. Thus, the more we study the vegetative state the more we realize that the term itself should be abandoned and replaced with a clinically validated set of consistent terminology based on an conceptually and empirically coherent understanding of consciousness that acknowledges a spectrum of possible states a patient could be in when they are seemingly unresponsive to the proddings an external observer.

References

Brefel‐Courbon, C., Payoux, P., Ory, F., Sommet, A., Slaoui, T., Raboyeau, G., … & Cardebat, D. (2007). Clinical and imaging evidence of zolpidem effect in hypoxic encephalopathy. Annals of neurology, 62(1), 102-105.

Casali, A. G., Gosseries, O., Rosanova, M., Boly, M., Sarasso, S., Casali, K. R., … & Massimini, M. (2013). A theoretically based index of consciousness independent of sensory processing and behavior. Science translational medicine, 5(198), 198ra105-198ra105.

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The Inner Life of Vegetative Patients and Why It Matters

MRI

Here’s the latest draft of my paper on covert consciousness in the vegetative state, which is still very much a work-in-progress. If you compare it to the earlier draft I posted, you can see I am taking the paper in a more bioethical direction, which is a whole new ballgame for me. Comments welcome.

Abstract: Adrian Owen and colleagues (2006 et al.) report using functional neuroimaging to detect residual levels of conscious awareness in patients diagnosed with vegetative state syndrome. These studies have generated immense scientific and public interest largely due to the putative moral significance of consciousness. These findings raise vexing philosophical and ethical questions about the nature of consciousness and its moral significance. My goal in this paper is to critically examine these findings and evaluate their significance from a clinical-ethical perspective. The general lesson is that determining the moral significance of consciousness is complex and multifaceted.

Link to PDF: Williams 4-24-14-InnerLifeofVegetativePatients

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Reflections on My Dislocated Shoulder: Two Types of Pain and Their Moral Significance

I recently dislocated my right shoulder and not surprisingly this experience has caused me to reflect on the nature of pain. In this post I will use my own experience coupled with a thought experiment to argue for two distinct types of pain: reflective pain and nonreflective pain. Having spelled out this distinction, I will raise some difficult questions about their respective moral significance.

Reflective Pain

If you are right-handed like myself, a dislocated right shoulder is an example of an injury that occasions reflective pain par excellence.  In essence, reflective pain is pain that interferes with your day-to-day functioning by causing you to consciously reflect on it more than normal. Everything is now harder and more painfully deliberate to do e.g. taking a shower, putting on clothes, hugging my wife, wearing a backpack, opening a beer, etc. The thousands of micro-tasks I typically used my dominant hand for in coordination with my non-dominant left now must be performed awkwardly with my left hand alone in order to minimize pain in my right shoulder. This has halted my daily productivity significantly. For example, as a grad student and denizen of the 21st century, I spend much of my time on a laptop. It’s amazingly slow to type with only your left hand on a QWERTY keyboard. You actually type significantly less than half of normal speed because you have less fingers but you also have to stretch your fingers more to reach across the whole keyboard. This has made day-to-day academic housekeeping and research painfully tedious in a literal sense.

Thus, the salient feature of reflective pain is that you can’t help but reflect on it because throughout the day you are continually reminded of your injury every time you go to do something that you previously would have done without hesitation. Now every motor intention is tentative and the perception of thousands of lost affordances is palpable. Reflective pain intrudes and interferes with your thought processes because you are acutely aware of the bodily powers you have lost and the pain that has replaced them.

What about nonreflective pain?

Nonreflective Pain

Nonreflective pain is quite different from reflective pain. Imagine you are walking across a desert keenly intent on getting to the other side. It’s sweltering hot so you expose your back to the air. In so doing you introspectively notice a pain sensation localized to a patch of skin on your back. You can’t remember how long that pain sensation as been there. The pain isn’t screamingly intense nor does it burn or throb. It’s more like a light tingle or steady buzz. It doesn’t itch and you feel no compulsion to reach behind you and scratch or rub it. In fact, the pain seems to be minimized by simply leaving it alone. The pain is localized such that the movement of your muscles and skin across your skeleton doesn’t exacerbate the pain. In fact the pain doesn’t interfere with your walking at all.

 The pain doesn’t necessarily command your full attention and often when you are absorbed in watching out for rattlesnakes or walking across tough terrain you entirely forget the pain is there. It’s only when you get on flat easy ground again and your mind begins to wander that you can notice the pain, buzzing with the same steadiness as always.

As you walk you begin to use the pain as a source of introspective entertainment. The pain becomes more of an interesting sensation to play with than a genuine nuisance. The pain is neither pleasant nor unpleasant. It’s simply there. You can choose to attend to it or not. You can describe the sensation and localize it to a particular patch of skin, but you don’t mind the sensation; it doesn’t bother you. In fact you have grown to like it because it gives you something to reflect on as you walk mindlessly across the desert. What’s interesting about the pain is when you are not reflecting at all but entirely in the flow of walking the pain is not consciously noticed at all. There is seemingly no conscious awareness of the pain as you are absorbed in walking. There is only the ground before you and your movements. But even if you don’t consciously attend to the pain the pain is there nonetheless (presumably). It’s a steady sensation, but it seems then that not all sensations are necessarily conscious. This is what David Rosenthal might call “nonconscious qualia”.  If you didn’t introspect and reflect on the pain sensation, it’s hard to imagine it interfering with your cognitive functioning except at the grossest level of physiological nociception.

The Ethics of Pain

Now that I’ve distinguished these two types of pain, I want to ask a series of rhetorical questions. Do animals have reflective pains or are all their pains nonreflective? If so, which animals have reflective pain? All of them, or only the super-intelligent animals like apes, dolphins, and elephants? What about fish, insects, rats and cats? What is the evolutionary function of reflective pain, if it even has one? Is nonreflective pain just as morally significant as reflective pain? If we knew that a vegetative state patient had nonreflective pain, are clinicians obligated to give them pain medication?

Perhaps these are bad questions because the distinction is a false dichotomy, or conceptually or empirically mistaken. Maybe it’s a matter of degree. But it seems intuitive to me that there is something morally distinctive about the type of pains that cause us suffering and anguish on account of our reflecting on them and not just in virtue of the first-order sensory “painfulness” of them. I don’t mean to suggest that first-order painfulness has no moral significance but it seems to me that it should be weighted differently in a utilitarian calculus.

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