NASSP 2010 Presentation: The Invisibility of Mental Illness in Bioethics

[Note: This was originally published at my previous blog, Prospeculating, on 19 Jul 2010.]

According to the National Institute of Mental Health, 26.2% of Americans (18 and older) suffer from a diagnosable mental disorder in a given year.  The heaviest burden of mental disorders falls on 6% of the population.  According to the World Health Organization, this percentage holds across the world population.  This means that 2010 will see (as a low estimate) 408 million people worldwide suffering from some form of mental disorder.  120 million of those suffering from a mental disorder will suffer from at least depression. According to the WHO, hearing loss, vision problems and mental disorders are the most common causes of disability.  Further, mental disorders comprise 14% of the global burden of disease.  Global burden of disease measures the total life lost due to premature mortality and years of life lost due to time lived in states of less than full health.

The reason I state these statistics is to show that mental illness is not an outlier case.  It is not something far outside the norm.  It is a persistent and major problem in the world.  Yet, there are few conversations about mental illness in the field of bioethics, what conversations exist are generally minor conversations in terms of relevance within the field, and, I think, these conversations are asking the wrong questions.  I want to find the right questions to ask.  What is missing from the field of bioethics is a solid attempt to describe and understand the ethical burdens of mental illness.  What kind of ethical burden is mental illness?  What is the lived experience of mental illness? What kind of vulnerability does mental illness create?  These questions have not been asked in bioethics.  But I think that they can be asked and answered.  The preexisting conversations in bioethics, along with preexisting conceptual tools outside the traditional field of bioethics, can serve as a launching point for a new kind of conversation about mental illness.

There are three preexisting conversations about mental illness in the bioethical literature.  The first of these—what I call the anti-psychiatry conversation—is generally held to be outside of bioethics proper, instead belonging to the subfield of philosophy of psychiatry.  Although philosophy of psychiatry has had considerable crossover with bioethical conversations about mental illness, it is held to exist apart from bioethics as a whole.  The second conversation—what I call the autonomy conversation—is the predominate mental illness conversation in bioethics.  Finally, the third conversation—what I call the phenomenology conversation—is a fairly recent develop within the last decade and has emerged from nursing literature.

The anti-psychiatry conversation developed out of Thomas Szasz’s critique of psychiatry.  This conversation concerns the ontological nature of mental illness.  This conversation ranges between two extremes.  At the one end is the view that the majority of conditions labeled mental illness are not illnesses at all.  Instead, they are labels for the organization of the use of societal force against individuals who do not conform to social norms.  This has the dual purpose of stigmatizing the mentally ill individual and preventing these individuals from taking responsibility for their personal lifestyle.   This end of the spectrum denies the reality of mental illness in toto.  At the other end of the spectrum in this conversation is the hardcore psychiatric position, which holds that mental illness is a biological conditional completely in keeping with the labels of disease used in other fields of medical work.  The conversation between these two sides ranges across the spectrum from mental illness being completely socially created to completely biologically determined and every combination in between.

The autonomy conversation is focused on the practical issue of when a mentally ill patient can lose the power to decline treatment.  If, like the anti-psychiatry conversation, one were to envision this conversation as a spectrum, it would be between the justification and lack of justification of coercive treatment–the justification end of the spectrum being the position that the presence of mental illness in itself is a justification for coercive treatment and the lack of justification end of the spectrum being the position that mental illness alone can never be an adequate justification for coercive treatment.   A survey of the literature on this topic shows that the conversation mostly oscillates within the justifiable half of the spectrum.  The majority of the conversation is not about if coercive treatment is justifiable, but when and how; the assumption being that the particular ethical problem wrapped up in mental illness is a loss or marked decrease in autonomy.

Both of these conversations are useful in their own way, but they miss a larger point: the impact of mental illness on the afflicted individual.  That is not to say that these conversations neglect to notice that mental illness is always attached to an individual—is not an abstract notion divorced from concrete meaning.  Both the anti-psychiatry and autonomy conversations are predicated on the idea that an individual is treated—the question is precisely how to treat the individual.  But both conversations skew towards the medical professional’s perspective and in the process minimize the perspective of the patient.  The third conversation attempts to correct this.

In truth, the phenomenology conversation is less a conversation and more the emergence of a new kind of case study in the nursing field.  There is a recent trend, albeit a minor one, to use the phenomenological method in the reading of case studies.  The goal is to discover the experience of mental illness.  While I am glad that this conversation is taking place because it seems to be a step in the right direction, I am hesitant to call this trend successful in any meaningful way.  One of the major problems is that the phenomenological method is being applied in a superficial manner.  A consistent problem with these studies is that phenomenology is used to give an objective gloss to the problem, while the studies actually better reveal the biases of the researchers towards those who are mentally ill.  Although this is useful in itself, it still reveals a basic failure in the project of the phenomenology conversation, for all its good intentions.  Even beyond this particular failure, the phenomenology conversation does not escape the emphasis on the medical professional: the object of the conversation is still merely to enable the development of certain professional capabilities in mental health nursing.

The biggest problem with the skewing of the conversations towards the perspective of the medical professional is the dominance of this concern in bioethical conversations on mental illness.  The autonomy conversation is by far the most prominent conversation on mental illness in bioethics; yet, it is in this conversation that the emphasis on the medical professional plays the greatest role.  This is most evident in the predominance of the Ulysses contract in the autonomy conversation.  The Ulysses contract is a form of advanced directive.  Advanced directives are made by an individual to give instructions on that individual’s care in the future if that individual becomes incapacitated—such as in the case of a coma.  Likewise, Ulysses contracts are made by an individual to give instructions on that individual’s care in the future, but in contrast to traditional advanced directives these instructions are not for in the case of incapacitation but for in the case of a breakdown of decision-making ability without an inability to make decisions.  They take their name from the Roman hero Ulysses’ request that he be tied to the ship’s mast to prevent him drowning himself in response to the call of the sirens.

Although Ulysses contracts were originally envisioned as an option for Alzheimer’s patients, they quickly were adopted for other forms of mental disorder, such as depression, bipolar, disorder, schizophrenia, and other forms of mental disorder that are colloquially referred to as mental illness.  What is important about this use of the Ulysses contracts is that its importance to the autonomy conversation is legal.  Although the discussion of when a Ulysses contract can be enacted is couched in ethical terms, the overall purpose of the Ulysses contract is legal—to protect the medical professional.  In other words, the largest portion of the autonomy conversation, which itself makes up the majority of conversation in bioethics about mental illness, is dominated by legal not ethical topics.

Despite their flaws, however, I don’t want to claim that these conversations are not useful outside of the narrow focus that the conversations themselves have set.  I think that all of these conversations have something to offer in terms of opening up a broader discussion on the ethical burden of mental illness.  The phenomenology conversation points to the potential to listen to and understand mentally ill individuals—a potential that is required to start the conversation I want to have.  The anti-psychiatry conversation offers a way to delimit the conversation and find a narrow starting point from which to begin exploring the ethical burden of mental illness.  The autonomy conversation offers some hints of the conceptual tools necessary to talk about the ethical burdens of mental illness.  All of these elements are important for exploding the discussion of mental illness.

Just starting a conversation involves creating some boundaries within which the conversation can take place.  In the case of mental illness, the topic is broad.  There is a significant difference between a disorder like clinical depression and schizophrenia and talking about the two as if the experience is the same is to make a serious mistake.  I think that for the purposes of starting this conversation, depression offers the most fruitful avenues of possibility.  Depression is the most common mental illness, so common that many first person accounts of depression already exist in print.  Further, depression comes in various severities and thus provides a further means of limiting the conversation.

It is here that the anti-psychiatry conversation becomes useful.  The history of this conversation is one of distinctions.  Szasz represents an extreme viewpoint that has largely been rejected within the conversation.  His position that most mental illnesses are fictions is too strong a claim.  There are many reasons for this, but this is not the place to have that discussion.  Suffice to say, while Szasz’s claims may hold for certain mental illnesses, they do not hold for all.  In fact, this is one of the biggest problems with the anti-psychiatry debate: mental illness as a category is simply too heterogeneous to be useful as a term of analysis.  It is highly likely that some of the individual disorders within the category are socially created.  Simply pointing to the listing of homosexuality as a mental illness into the 1970s makes this point.  Likewise, some mental illnesses are dominantly physical, like Alzheimer’s.  Any discussion of mental illness is going to have to very finely cut distinctions between various forms of mental illness.

There are three categories of depression that can be derived from the anti-psychiatry debate: justifiable depression, chronic depression, and severe depression.  The first of these, what I very hesitantly call justifiable depression, is a form of depression that arises from life events.  It is these forms of depression that Szasz’s critique most accurately describes.  Justifiable depression occurs when some kind of misfortune or generally negative event or state enters one’s life.  It makes sense to become depressed when one experiences a miscarriage.  It makes sense to become depressed when one loses one’s life long job.  That is not to say that everyone will or should become depressed in these circumstances, but only that such instances of depression are understandable and justifiable.  Yet, when depression takes this form, it is right to question the medicalization of the mood.  Szasz’s critique seems the strongest in these cases when medical treatment replaces dealing with the depression.  Numerous accounts have been written on experiences of this form of depression and how medicalization actually further damaged the individual.

The second and third categories of depression—chronic depression and severe depression—might be understood as the same form, but differing severity.  Both of these categories differ from justifiable depression in that there is no perceivable cause of the depression.  An individual may be in circumstances that they themselves consider good and yet feel crushing depression.  Depression becomes an unknowable part of the individual that they cannot define or pinpoint.  A constant searching for a reason may become part of the individual’s life, yet that reason–that justification—is never found.

The difference between the second and third categories of depression is one of functioning and this separation is purely for theoretical clarity.  A separation I want to make in the discussion of mental illness is that between the ethical burdens caused by mental illness itself and the exacerbation by social forms and institutional treatment of the ethical burdens of mental illness.  Thus, both the second and third categories of depression are chronic forms of non-justifiable depression, but the third category, severe depression, involves permanent or persistent institutionalization.  Severe depression reduces an individual’s functioning to such a level that they are no longer are able to navigate the world and so are removed from the world.  In contrast, chronic depression inhibits functioning, yet functioning is not so inhibited that the individual’s ability to navigate the world is destroyed, merely impaired.  It is this last kind of depression that I think will be the most fruitful to concentrate on.  Once an analysis of this form of depression is achieved, then an analysis of the other two forms can be derived.

All of this, however, simply serves to narrow the conversation—it does not start the conversation.  For the conversation starter, I want to turn to precisely the conversation that I find so problematic: Ulysses contracts.  For all the problems I have with the way the autonomy conversation has narrowed the discussion and the way Ulysses contracts have served to turn the discussion more towards the legal than the ethical, I think they offer a tantalizing possibility.  Ulysses contracts hinge on a conception of the self.  The whole underlying idea behind Ulysses contracts is that we have a duty to the patient to preserve their true self—who they are—even in the face of an individual at present wanting to act contrary to the interests of their self.  The idea is that the diachronic self is more important than the synchronic self, that the diachronic self has a special value over the synchronic self, and that the diachronic self is the seat of autonomy.

The concept of the self seems especially important to mental illness is general and depression in particular.  Physical illness can certainly have an impact on the self, but this impact is an additional fact of the matter—one becomes sick or injured and this affects how one understands oneself.  Mental illness, however, might be considered to affect precisely the seat of the self.  Even if one rejects a mind-body duality (which I do), there is a difference between an illness that impacts one’s physical capabilities and one that directly impacts one’s actions and behaviors.  The importance of the latter seems greater because there is no form of mediation in one’s understanding of these actions and behaviors.  The impact of physical illness can be understood at a distance.  The impact of mental illness cannot be pushed away to be considered.  In some ways, although not the only ways, mental illness might be considered a disease of the self.

The discussion of the self in the Ulysses contract conversation has reached outside that debate on  one occasion (that I am aware of) into the broader autonomy conversation in a paper by Eric Matthews.  In that paper, Matthews argues that we cannot coerce treatment on the basis of irrationality.  Instead, we can only coerce treatment when it helps preserve the individual’s authentic self.  I like the concept of the self as a tool for understanding mental illness.  However, I think this idea of the authentic self is revealing because it claims a unity and cohesiveness of the self.  The very justification for coercive treatment that the autonomy conversation seeks to find in the self is built on the idea that a unified, authentic self can be identified.

What does it mean to be “authentic?”  How can someone not act authentic?  Why should certain periods of a person’s life be considered authentic and others not?  I think these questions, when answered are ultimately fatal to the authentic conception of the self.  However, there are other frameworks of the self that can be drawn upon to make sense of the problems of mental illness.  Frameworks of the self such as those provided by the work of Hilde Lindeman, Lisa Tessman, Claudia Card, Margaret Walker, and Marya Schechtman all give alternative conceptions of self that might better make sense of mental illness.

I think a way to start the conversation about mental illness is to bring in forms of analysis and conceptual schemas from two lines of thought: feminist philosophy and disability theory.  Both of these areas emphasize burdens and vulnerability.  They both offer tools to explain and deal with these burdens and vulnerabilities.  Such tools, would be useful as a starting point for discussing the burdens and vulnerabilities inherent in mental illness.  Yet they would not be the end of the conversation—it would not simply be a matter of applying these tools and concepts to mental illness like a cookie cutter to dough.  Mental illness would also have its impact on these fields because mental illness is a fundamentally different category from both gender and physical disability.  While all of these—mental illness, gender, and physical disability—are vulnerabilities in certain ways, I think that mental illness is different because it is an invisible burden.  Yes, it is true that gender and disability both have invisible burdens, they are ultimately a visible category that can be more easily understood because of this visibility.  Mental illness on the other hand is at its heart invisible and so its burden is also, inherently, invisible.

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