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The Left Atrium
Berries for brains
Catch a falling star
We all need an escape every so often: a good malt scotch, an episode of Seinfeld, a little lazy jazz — where there's a will, there'll always be a way. It could be said that the richest avenue for this purpose, though, is the complete and utter surrender to a good story, the best of them taking us away time and time again. Whether they be fairy tales, biographies or big screen melodramas, the boldest of the lot resist the trend to sanitize their message. That's why I was so taken by Shrek, an animated film about a large green ogre whose life is turned upside down. A fairy tale with a twist, its main theme is that things are often not as they seem, and it parodies stereotypes at every turn. "You're supposed to sweep me off my feet," frets the disgruntled princess to the not-so-knightly Shrek. A dissident fable for the thinking mind, it never resorts to condescension in order to make a point.
Other problems are evident in this book. Of great concern is that it takes common experiences — restlessness, frustration and confusion — and renders them "the early stages of mental illness." An idea that would have most North Americans on their way to the crazy house, it raises serious doubts about how we define mental health. This book would have you believe there is a state of "normality" free of worry, stress or "unjustified" feelings. It also adds weight to the view that mental illness is increasing — but whether or not this is indeed true is a matter of much debate. Some would argue that the real problem lies in a growing range of human behaviour finding its way to the DSM (social anxiety disorder is a case in point). With 2 to 4 million of North American kids now on psychotropics, this no doubt merits critical study.
Integral to well-being is the interpretation of experience: mental health is bred by values we instill. That's why books on the subject should know their place, particularly in educating young minds. A shift in perspective is called for here. What would it mean if, instead of a "symptom," anxiety became evidence of a desire to do better? Dag Hammarskjöld once said, "Bless your uneasiness, as a sign there is still life within you." Kids with spunk can get anxious pretty easily when something's bothering them. Without a way to ground that energy (think spinning wheels on a jeep without dirt) anxiety tends to turn on itself. Fish is under stress, and he's asking a lot of questions. Do we treat him as "sick" or hail him as "driven"? Shouldn't we be more concerned with kids who don't question? At least Fish gives a damn.
Yet, with all his gumption, his efforts are hardly met. Reassurance abounds and berries are picked, but at no point is Fish counselled on self-reliance — to the contrary. "Sometimes we can't solve our problems on our own," Iris tells Fish, without first helping him to do just that. Instead, we hear vague reference to "special people" at clinics he can "stay at for a while," and off he goes. Are we talking about psych wards, here?! For kids who can't concentrate at school?!
Catch a Falling Star is the first in the Iris the Dragon series on mental health problems in children. One can only hope that, in coming instalments, the details of "prevention" are taken more seriously. Professed to be part of the book's purpose, we hear almost nothing about it. Staff and parents talk ways to keep his brain healthy, but we are not privy to what this entails. And that is the book's most significant flaw: it fails to inform us in places it should. The author seems more concerned with "disassociat[ing] the topic from the real world" and with starting a "Dear Iris" fan club (the press package includes a letter-writing form).
On a similar note, it seems that a sizable effort went into rounding up praise or least the suggestion of such. Endorsements come from a number of sources, but words ring hollow with bloated predictions. Some have logos, while others are listed with stars. What is it, exactly, that they are backing? A children's Dear Abby in Iris the Dragon? Medicated "risk management"? Berries for brains?
It's worth noting that the title of this book comes from the claim that, in legend, dragons must keep the stars from falling. Pity, since for as long as I can remember, falling stars meant imminent good fortune. Iris the Dragon would have you throw them back in the sky, perhaps in the same way she'd have all children perfect: always attentive, never worried and easily controlled.
Jessica Mendes Room for a view Am I my brother's keeper? Two perspectives on consent
Sophie, with a bruised eye, and a bloody gap where a tooth had been, implored us to help her. She wanted $40 to buy food. Her ex-husband had left town without giving her money to feed her teenage boys. They were hungry and cold. She said she was desperate and had no one to ask for help. She added that, having seen the mezuzah beside our door, she knew we would do the right thing.
Her battered right eye clenched convulsively while the left bulged in an unnatural stare. A white crocheted sweater, twisted over her lumpy torso, was her only protection against an unseasonal frost. Through nonstop pleading and crying, her tongue kept pushing through her lips, making a smacking sound that punctuated her sobs. Tardive dyskinesia and her dishevelled, frantic state blew Sophie's cover as someone whose misery could be relieved with $40. She needed a psychiatric assessment and some basic necessities until help and treatment could be arranged. At 10 p.m. on a weekend, the emergency department was the only option.
As if reading my mind, Sophie got down on her knees beside my kids' shoes and begged me not to call the police. I offered her a bag of groceries, but she refused, saying a pinched nerve prevented her from carrying anything. The idea of driving her to the grocery store was also rejected. She was fixed on $40. Finally she accepted some money and the proferred bag of food. With extravagant thanks she attempted to kiss my hand, and left.
My neighbour had called the police before I could reach the telephone. A cruiser was idling in front of our house, lights flashing. Two officers attempted to cajole a resisting Sophie into the back seat. Thrashing, her face contorted with distress, Sophie glanced up long enough to see us looking at her through the window. With the bills crushed in the palm of her hand, she angrily made a rude gesture in our direction.
I imagined the ethical dilemma that would soon confront the emergency physician asked to assess Sophie. I doubted that she would readily agree to a psychiatric evaluation. And I figured that she had been in this situation before. Perhaps medication had been prescribed at one time but was lost. Or perhaps she had simply stopped taking it. Since she was not obviously a mortal danger to herself or an explicit threat to others, it is hard to imagine how the physician could justify overriding the legal obligation to obtain Sophie's consent to an evaluation. Any assessment, medical care and even community follow-up would require her explicit agreement. Respecting Sophie's right to autonomy and self-determination, the physician would have to let her go.
Should a society that considers itself to be humane and compassionate leave those who are chronically ill and unable to care for themselves and their children to fend for themselves? This dilemma is one of the primary legacies of antipsychotic drugs and deinstitutionalization. Treatments for the symptoms of mental illness exist but are often refused by patients or followed inconsistently. A shift away from paternalism toward individualism has left many people with mental illness relatively autonomous but stranded without care, drifting in an era of scarce resources.
In The Ethical Canary Margaret Somerville refers to the ethical and legal responsibilities of the physician to obtain informed consent to treatment. Although she maintains that it is the primary responsibility of the physician to "act as the patient's advocate in obtaining the treatment that the physician considers therapeutically most appropriate," she is unequivocal in her view that failure to obtain consent is medical negligence.1
But what if the patient is not competent? For example, we can conjecture that chronic mental illness may have had an impact on Sophie's cognitive abilities: her attention, memory and ability to think clearly. The question of whether she is sufficiently competent to understand and appreciate her illness is central to the question of whether she can grant informed consent. Somerville distinguishes between the ability to understand information given by the doctor and the ability to appreciate, from an emotional standpoint, the implications of this information for the course of one's illness. When there is a conflict between these two standards for determining competence — one based on factual understanding, the other based on the ability to contextualize those facts — the law weighs in on simply comprehending the facts. This is the less stringent test, and one that allows more people to be deemed competent. Somerville writes:
Under the latter [personal liberty–favouring] type of test, people would be considered competent if they had the mental capacity to understand the required disclosure of information, regardless of how they viewed this information in relation to their illness. Under this test, adults would be competent even if they did not believe that they suffered from the illness with which they had been diagnosed, or that the consequences of refusing treatment might be serious or fatal.2
Somerville concludes that, unless the patient's emotional state makes her completely incapable of understanding, she must be deemed competent to make decisions. In this context, a physician would have no option but to offer the patient, even a psychotic patient, all the relevant information about her disease and to allow her to make her own choices.
Somerville's view is a secular and legal one. But Sophie's reference to my obligation as a Jew to "do the right thing" prompted me to examine the issue of consent from a Jewish perspective. In contrast to contemporary mainstream bioethics, in which competence and informed consent form part of the basic vocabulary of the discipline, these notions are rarely discussed in Jewish texts. In his collection of essays, Duty and Healing, the late clinical ethicist Benjamin Freedman wrote that the principle of autonomy, which underlies the concept of informed consent, is not a persuasive factor within Jewish law (Halakha).3 In this context, a person is viewed as the temporary custodian of her body, rather than as owning that body and having the right to decide what happens to it. Each person is charged with the duty of safeguarding and preserving her health, as well as the health of others, as if these were precious, borrowed entities that require nurturing and maintenance:
In the halakhic understanding, there is a duty upon the physician to heal, and a duty upon the ill person to be healed, and therefore the entire value foundation underlying the principle of informed consent is almost totally nullified. According to halakha, the mode of treatment is frequently not established according to the will of the patient and his consent, but rather according to the objective situation.4
This rather dogmatic understanding of medical choices presupposes that there is one objective solution to medical problems. Although Freedman does agree that the Jewish view of bioethics hinges on the duty to heal others as well as to preserve one's own health, he asserts that there is a more nuanced interpretation of consent, one that extends beyond the obligation to simply choose life over death. He argues that decisions about individual medical treatments cannot be divorced from their context of diagnosis, prognosis and care — nor, indeed, from the way in which a medical choice fits within, or distorts, a patient's life-plans.
The notion of informed consent should therefore not refer to a single discrete event, like choosing or refusing a specific treatment, but to the ongoing relationship between a doctor and patient, one characterized by mutual respect and the give-and-take of information that will permit the patient to decide what is in her best interest, if she is capable of doing so.
What does this mean for Sophie, spotted one week after her visit weaving between 4 lanes of traffic? The more traditional, legalistic view would place the responsibility for making a decision about treatment squarely on Sophie's shoulders, especially if her behaviour was not overtly dangerous to herself or others. Somerville's interpretation of this view is that the freedom to determine one's medical fate takes priority over more stringent conditions for consent, such as insisting that the patient demonstrate a comprehensive understanding of what is happening to her. But there is not much point to knowing the facts without being able to put them in context. When a person suffers from a mental illness that results in confused thinking and a wanton disregard for health and well-being, Freedman argues that others in society must assume the responsibility of caring. This is an ongoing social commitment between physician and patient, one predicated on an individualized approach to safeguarding the health of those who cannot safeguard it for themselves. This article is one of the runners-up in the general category for the 2000 Essay Prize. The contest winners appeared in the June 26 issue of CMAJ.
Susan Pinker References
One thousand words
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It's too bad the same couldn't be said for Catch a Falling Star, a new "made-to-order" fairy tale about mental illness in children. Though clearly a book with its heart in the right place, it assumes very little intelligence on the part of the child. In it, a young boy (Fish) is supposedly in the early stages of mental illness because he sometimes can't concentrate at school. Iris the Dragon befriends him, they go fishing together, and Fish talks about his worries. "Our brains can get sick, Fish," Iris tells him. "Did you know that picking berries is good for your brain?" she asks. No, replies a confused Fish, asking how that could help. "It exercises your brain parts ... picking them all sorts of ways, first with your right hand and then with your left ... ." The boy depicted looks somewhere between 8 and 14 — a tad too old for Romper Room antics.
Sophie arrived at our door unexpectedly on the evening of Yom Kippur. There was a sound of sobbing from the front hall, and immediately the telephone began to ring. A neighbour was calling to warn us that an unwanted visitor was walking up our path.
