Reflections on the Bell Curve

We -many of us in the Western world at any rate- live our lives on a Bell Curve, thinking -hoping- we occupy a place near an out-lying position: the 5% area that presumes we are not just normal,  but rather, exceptional… And given the population numbers, there is time spent worrying that we are inadvertently drifting towards the center -the average- and hoping that we are somehow firmly anchored on an edge where interesting things happen. We seem to aspire to live in interesting times, despite the doom that these times apprehend in the apocryphal Chinese curse.

It is a mild conceit, perhaps, but one that is not without ramifications: to discover that one is, in fact, quite average is inevitable as one travels through an otherwise eventful life, but to realize it too soon, may be to hold an imperfect mirror up to what had hitherto been seen as important and to distort an otherwise perceptible, measurable -believable- reality. It may denigrate the path, impute the incentives that had determined the choice.  Purpose maligned is purpose denied. We are, to an extent, our choices and we choose what we hope -or expect… 

Or do we? My interest was stirred by an otherwise banal finding in a study reported in the Huffington Post: that ‘dreading pain may be more unpleasant than the pain itself’.( http://www.huffingtonpost.com/2013/11/24/dreading-pain_n_4318114.html ) Uhmm, okay… I mean, how new is this? Let me quote from a 16th century poem (Sir Philip Sidney) that already recognized that: Fear is more pain than is the pain it fears. Plus ca change, eh? But it made me think that how we perceive things is highly conditioned by our expectations of them. Or dread of them.

Think of an impending biopsy, for example, where the result -not volition- may determine the direction of the road ahead. It is when the Bell Curve becomes an albatross, and not a presumption. Although pain and the anticipation thereof was what was examined, it seems to me not a large step to posit that the study would also suggest that we often see ourselves on the wrong end of the 5% -the wrong side of the curve- and the pain varies according to how anxious we are about the result of the test. Even though the likelihood is one of benignity and we have been reassured to that effect, that is not how we feel it beforehand.

Or consider childbirth, with all its attendant myths and worries -pain not being the least of these, of course. That it is a process which has been enacted countless times without incident, or that -hopefully- it will be supervised with expertise and thoughtful care seems of little import until it has happened.  One’s Bell Curve position, in other words, is only of value in retrospect and seems not at all meaningful until it is history.  As a result, we may enact the expected pain or imagined problems over and over in our heads until it clouds our judgement,  or engenders choices that might otherwise have lain fallow.  I’m thinking here of the woman opting for an elective primary caesarian section for the delivery of her first baby, for example -chosen largely through fear of the unknown, fear of the unexperienced, fear generated by the uncontextualized tales of friends. Or even the decision to forego an attempt at a trial of labour after a previous caesarian section because of an anticipated repeat of similar circumstances.

And yet, is this telling us anything new? Well, probably not, except that much of our anticipated discomfort may be misplaced, or at least magnified more than necessary. Of course some of it stems from nescience -a rather obtuse, but kinder term for ignorance -a state that a doctor, say, might hope to ameliorate through patient explanation and reassurance and an exploration of the person’s reason for the anxiety. Spending time with them, in other words…

But sometimes -often, in fact- the anodyne seems to be in getting on with whatever needs to be done -and sooner rather than later, according to the study. Of course this is not always possible -and not even usually possible in obstetrics- but the concept, where feasible, still seems both appropriate and preferable: scheduling the surgery or other treatment at the earliest opportunity, putting the person on a cancellation list to expedite the procedure if there is not a more proximate possibility, triaging operative timing to take into account other factors than merely when they were first examined in the office. Even to be seen to be trying to take her worries into consideration may be anxiolytic… Although I am not overly hopeful; we are who we are: There was never yet philosopher that could endure the toothache patiently -an observation from an earlier but likely more widely read study: Shakespeare’s Much Ado About Nothing...

The dangers of perceived wisdom

The Court of Public Opinion -an interesting phrase to be sure. It implies the judgemental assessment of an action, an idea -an opinion- by society at large. An interpretation, not necessarily impartial or even appropriate. A reaction, really, to something that stands out as different in some way from that Public’s perceived norms.

A Culture’s value system is usually encapsulated in what sociologists have termed its folkways -unconscious guides of conduct and thinking- and its mores -its more important customs. These have an even greater significance than may seem obvious at first glance: they are assumed, taken for granted and thus largely unexamined. And of course they vary from country to country, culture to culture -although less so nowadays with our ubiquitous interconnectedness; they are what have always made foreign travel so exciting. So broadening: that others espouse something terribly alien to what we have been acculturated to accept… to expect…  Epiphanous that our own customary behaviour is actually heretical somewhere else. That norms, in fact, aren’t necessarily normative.

All of this suggests that societal expectations can vary; not all values transcend geography; ideas that once held sway are ultimately mutable -inevitably changing as society itself evolves. But existent mores are powerful creatures nonetheless; they channel behaviours and engender punishments for perceived transgressions. When an act conflicts with canon, there are consequences -if only those of guilt and remorse, or the necessity of an obsequious denial of responsibility.

And once an act is deemed aberrant, anomalous -or just plain wrong– it is anathema to be seen or suspected of performing it. Think of our current attitude to, say, drinking and driving: years ago it was a subject of humorous tolerance; now it incurs not only societal, but also legal penalties. The same with such diverse things as domestic violence, or even animal abuse: once occasioning an uncomfortable averting of the eyes, they are now subject to intervention and prosecution.

It is difficult to know or predict what will fall within the purview of acceptable behaviour, but moralists are not without hope that their particular vision will be thus incorporated and often actively pursue campaigns to that end. Smoking is perhaps the quintessential example. While there is little debate about the adverse health issues visited upon the smoker, this was generalized to include his immediate vicinity in an ever-expanding circle that soon came to include the room where he smoked, the adjacent rooms, the floor, the building, and finally the grounds upon which the entire complex rested. Now, with a few disgruntled cynics it is largely accepted as appropriate and well within the bounds of common sense.

Public Health authorities have long recognized the value of trying to convince their public that certain issues should not be ignored. They are so important that to allow the behaviour is tantamount to endangering the health of innocent bystanders: vaccination for example and its benefit of ‘herd immunity’ whereby the more people are protected from some communicable disease, the less of them are available to transmit it. And for some reason while the reliability of vaccination seems to vacillate between acceptable and questionable in some populations, other health issues have been more thoroughly encapsulated into popular wisdom. Smoking in pregnancy, for example, or excessive alcohol consumption -indeed any alcohol consumption- by an obviously pregnant woman, are now behaviours that draw critical glances from friends and even uninvolved strangers. These have apparently slipped into the unconscious mores of a more-observant Society. They are unhealthy acts, selfish acts. We all now know this to be the case… How dare anybody disagree?

And there are even deeper levels of disapproval directed towards illicit drug use in pregnancy. Never tolerated or understood by most of us at the best of times, their use is so unacceptable in pregnancy as to engender almost universal anger and condemnation of the individual and her unfortunate circumstances.

I make these observations, not to deride what most of us would be willing to tolerate in a society, but more to draw attention to what this bias -however appropriate and well-meaning- is likely to do to someone caught on the other side of the equation. The opinions of others -their respect and approbation- is deeply influential, even required by most of us. So much so, the offending behaviour is often hidden or denied in an attempt to be seen to adhere to what is considered ‘proper’. To admit the deviance is to be excluded, criticized, judged.

How then, to help someone who is reluctant to admit to something of which she is ashamed? Something she might feel would prejudice your opinion of her? Your willingness to accept her without contempt? Alter the way you deal with her..?

An obviously thorny issue in obstetrical care, it is also a delicate one. Printed, official-looking prenatal forms with multiple tick-off boxes of questions go some way to alleviating her concerns: her issues might seem to be only a small part of a general interrogation aimed at all pregnant women -not just her… And yet concerns about who might have access to the information in the hospital setting might impede accurate answers. If she admits to drug use, will the hospital social worker take action to apprehend her baby, for example? Will she be treated differently if it is known that she was consuming alcohol in the pregnancy? If she was smoking? If she was the subject of ongoing domestic violence..? Will her personal integrity and wishes be questioned, or even disregarded in the name of some perceived Greater Good? With unknowns like these, would denial be her best option?

And how should the care-giver react? If the patient admits to something unhealthy, something seen as unacceptable, is the greater good to be realized by trying to change her behaviour and perhaps not writing it in the chart to protect her ‘secret’, or by alerting the appropriate authorities: pediatricians, medical specialists, and the like? It is an obvious choice for most of us, I suspect. But if a well-intentioned cover-up is initially chosen at the mother’s behest, suppose despite all efforts, her behaviour persists -does one then direct one’s attention to the baby, the mother… Society? And at what point? Is it a betrayal? It is a decisional labyrinth with untoward consequences down every path.

Ultimately, trust is probably the most likely factor affecting the honesty of the response for both parties. Trust that the person she has delegated to care for her in the pregnancy will honour her; trust that the route taken will be chosen with care and understanding. Trust does not always end at the expected destination of course, but hopefully it will be a fully explained and acceptable compromise. A place where she and her baby can live without regrets: in society… Where else is there, after all?

The Concept of Sober Second Thought in Medicine

Perhaps it is the vain attempt of Age to maintain its relevance in a time of incessant, dizzying innovation, but it seems to me there is something to be said for reflection before action.

We have here in Canada, a now much-derided political institution called the Senate whose members are appointed, not elected, and whose purpose is supposedly more to reflect regional differences than voter preferences (as in the other institution, the House of Commons). Approval of both institutions is required for legislation, although the Senate rarely rejects Bills passed by the more powerful and voter-elected House. Its purpose, at least according to Canadian myth, is to be a chamber of ‘sober second thought’, unsullied as it were by recent fads or the evanescence of events that might unwisely sway popular opinion.

While in practice, there is much to criticize about the Senate as an institution, the concept of ‘second thought’ is worthwhile.  And I see this as nowhere more important than in Health Care.

Our concept of health has evolved over the years as have our expectations. We no longer tolerate the intolerable with the equanimity of a century ago; at least in more affluent nations, we don’t expect children to succumb to infectious diseases, or women to die in childbirth. We assume there will be ever more sophisticated approaches to diabetes, treatments for autism, preventative strategies against heart disease… Knowledge conquers all.

But sometimes in our headlong rush to cure, we engender unrealistic -even unnecessary- goals. We unwittingly foster an assumption that living through life’s vagaries needs to be asymptomatic -or at least should be. And while I’m sure most of us understand the need for priorities in health care, its boundaries are, at best, often vague, and usually personal. This is to be expected: we enter the world of medicine only when there is a need, a worry -a symptom.

Symptoms are puzzles waiting to be solved, questions as yet unanswered. They do not always bespeak disease, of course; many point to an underlying concern, an anxiety that needs as much exploration as the condition feared. But the solution -the diagnosis and subsequent management- is not always as straightforward as it might seem. Not all symptoms require intensive investigation; not all conditions require treatment. And while all symptoms require explanation, most conditions also require options -and that is different.

The rush to cure leads down different roads, and not all of them pleasant -not all of them even necessary. An example from my specialty, gynaecology, might be illustrative. Let’s say a 48 year old woman is discovered to have fibroids (benign overgrowths of muscle tissue in the wall of the uterus) during a routine physical examination when she has her pap smear. She didn’t know she had them, had no symptoms that concerned her, and would no doubt have carried on her with life blissfully unaware of what lurked so silently just underneath her skin… But she is told she has some uterine tumours by her well-meaning family doctor. She is then told she needs an ultrasound -just to be sure they are fibroids- and is referred to a specialist for management.

The woman is understandably concerned about the ‘tumours’ growing inside her, and has probably talked to those of her friends who have had problems with fibroids, researched the issue online, and then arrived at the office primed for treatment. And there are many treatments -or at least, many variations on the theme of the need to treat. The usual approach has traditionally been a surgical one -with all the usual permutations and combinations that depend on the prevailing wisdom of the medical center or the research project currently underway. And then, of course, there are the medical and other non-operative methods -some new and sparkled with hope, some castigated online for the side-effects. As I have said, the need for cure can be all-pervasive, all consuming. And perhaps an imperative: anything less is a disappointment -a failure.

And yet the problem -at least in the case I have outlined- is not so much the fibroids, as the attitude attending them. They were, after all, aymptomatic, aproblematic, and indeed a concern that needn’t have been. Most will shrink after the menopause when there are no longer any stimulating hormones -and at 48, that time is not likely to be in the too distant future. Doing nothing, in other words, is acceptable; a ‘cure’ is unnecessary…

Yes, they could be treated -and heaven only knows they often are- but in her case, why? She needs an explanation, reassurance, and a promise of follow-up should any new questions or issues arise. You might think I have chosen a special case, an anomaly whose rarity shouldn’t really affect our exciting and ever-evolving management strategies. And it shouldn’t -there is much to learn, much to improve. We need cures for cancer, better and more effective vaccines, more inclusive and affordable Health Care… And yet sometimes we need to step back and decide what is truly worth pursuing and to what end; decide whether our goals have blinded us to the value of perspective. Knowledge without perspective is not wisdom; it is detail… It is Hope unsummoned.

The Senate may have something to teach us after all… despite itself.

Taking arms against a sea of troubles

A quasi-existential question: what do you do if you are a doctor dealing with a patient you don’t like? More importantly, however, what if you are a patient, forced by necessity or circumstance to see a doctor you don’t like? This is a question that is often framed in terms of racial, socioeconomic or cultural biases, but it may be something even harder to define, impossible to predict: a  clash of personalities or communication expectations. It should come as no surprise that no matter who we are or what our roles require, we simply do not get along with everybody. None of us.

I realize this can present major problems in emergency situations where choice and time may be severely constrained; hospitals often cover these exigencies with policy statements -directives as to how to proceed. The classic example in my specialty is the issue of a patient in labour whose baby goes into distress and requires some form of timely emergency intervention. It is three in the morning and the obstetrician on call is a male; the patient -perhaps because of culture or previous experience- will accept only a female obstetrician. While every effort is expended to accede to her request, it is sometimes simply not possible. Under such exceptional circumstances and in the interests of the baby in distress, the hospital policy can direct and delegate the emergency care of the woman to the available personnel. Most parents ultimately accept this and are grateful to have a healthy and uncompromised infant from the experience. It’s not a perfect solution, obviously, but under the circumstances, it is an understandable compromise.

There are other situations however, where a middle ground is perhaps more difficult to define and sometimes even more awkward and embarrassing to accept. Let us say, for example, you are referred to a doctor by your GP for a non-life threatening but nonetheless serious and important condition. It is difficult to get an appointment with any specialist, but your doctor assures you the wait is both necessary and worthwhile and sends in a referral. You investigate the doctor online and realize your GP has made a good choice, so you wait the two or three months to see him. But it is apparent within the first few minutes that you don’t like him; you don’t get along; he isn’t what you expected -or wanted- in a specialist. Now what?

Now consider the other side of the equation. You are a doctor seeing patient after patient; most seem appreciative, or at least pretend to be, and this is a balm to your fatigue. And then you notice that the next person, a new patient, is sitting on the other side of the desk staring at you suspiciously, avoiding eye contact when you attempt it, answering questions reluctantly or incompletely. It is clear she doesn’t like you, and yet she has been referred for ongoing care and management.

Both parties are embarrassed, or at least constrained in their response to the situation. To be fair, for the doctor, it’s an easier thing to probe gently at the relationship and try to uncover why there is hostility. Is she merely anxious about her condition, or concerned about its management? Are there questions that need answering? Options that need exploring? Is she not feeling heard for some reason? Is there something that is bothering her that you might be able to address? These are ways that are not unique to medicine to be sure. But if you cannot establish a rapport, if you cannot narrow the gap, would it be wise to continue the consultation? Would either of you benefit? Would whatever treatment suggested even have a chance of success if she was unhappy with you providing it? And what if it didn’t? Would she accept your explanations? Would she seek legal redress?

Of course, the interaction is one of unequal distribution of power no matter how it is disguised. The patient (I dislike the word client) needs something from the doctor and has probably waited a long time for the opportunity; it is important for her not to antagonize. And yet she doesn’t like him. Doesn’t trust him… So how much should she tell him? The information he requests is deeply personal, and confiding in him is out of the question. Does she merely terminate the interview and walk out? What is her GP going to think? Will she have to wait an even longer time to see another specialist? And suppose she doesn’t like that one either…

The problem is a multi-headed Hydra admitting of no easy resolution for either party.  One solution for the doctor, once he has recognized the difficulty, might be to suggest a second opinion -another colleague that she might find more acceptable. But even that is fraught with difficulties if they are all as fully booked as himself and the condition is one that would benefit from a more immediate response.  For the patient, however, there is probably an even greater dilemma if the doctor does not recognize -or care- that there is a problem. How does she let him know that she is not comfortable with him if he seems unaware? Or insensitive..?

Personal interactions are complex; even when overt power is not a factor, influence and authority are often covertly present. We are creatures of strata: higher status in one thing, lower in another; a sorting out of levels is inherent in all communication, all encounters. Medicine seems to engender a dependency that it needn’t: sometimes even a simple statement of concern would initiate a search for a solution.  However, it may be difficult for some people to be assertive -neither aggressive nor overly passive- in negotiating a need that is not being addressed. We are not all capable of that -even doctors…

Recognizing that I do not have a Nobel Prize-winning solution to a problem that has bedeviled mankind since its inception, and understanding that casting about blindly in the dark shadows of mistrust is unlikely to resolve the issue either, I have forsaken the twisted road for the simplest way out of the labyrinth:  I suggest the patient bring a friend or a partner to the consultation -someone who is at least privy to the issues and whom she could trust to mediate on her behalf. She may choose to have him stay in the waiting room, but he is nevertheless close at hand and readily available if needed. The extra -and trusted- surveillance might serve to identify her discomfort and extricate her from her seemingly untenable position. It’s what friends are for: to knit the raveled sleeve of care… Or at least spot the ravel.

What’s in a name… Cancer?

Words are important. Quite aside from meaning, each has its own shade, its own temperature. Rose calls forth a mood, an emotion, an expectation that is quite distinct from, say, daisy. Words are little coloured post cards that tell stories and paint pictures; each word elicits a miniature portrait in the brain. Together, they tell stories, individually they hint at direction: plot.

We must never underestimate words. Strung together, they are greater than the sum of their parts; considered separately, they are the clothes of narrative: the shoes and socks so necessary for travel. Science, however -more specifically Technology- has travelled so quickly along the route, it has left words trailing in its wake. Unable to keep up with the pace, and often frazzled at the pace, words, tired and dishevelled, have often done double duty: the same old articles of apparel keeping up appearances and providing some continuity for those watching breathlessly from the sidelines. A narrative is difficult to follow, let alone understand, if there are no recognizeable links with what went before. Even neologisms build on standard and widely understood words or phonemes: retrologisms, as it were…

I was therefore intrigued -although not altogether surprised- at the e-publication of a paper to be published JAMA Intern Med ( http://dx.doi.org/10.1001/jamainternmed.2013.8405 ) that dealt with how the use of the word ‘cancer’ influenced the way patients made decisions about their treatment options -even when the condition they were asked to consider was pre cancer, not actual cancer. Just that word, in whatever context, was enough to alter their choices. In many instances -especially in medicine- the words we utilize are maladapted, anachronistic and, in fact, misleading…

In the days when cancer was, by and large, only detectable as a fait accompli, who would have thought it necessary to create a word describing a ‘not-quite cancer’, or a ‘not-yet cancer’? And yet there are precedents; although in not quite the same context nor perhaps an entirely appropriate analogy for a sequentially evolving concept, the Inuit of northern Canada have always used different words for different types of snow, for example. To a southerner, snow is snow; it all seems the same to an inexperienced observer, and not worth the picayune divisions. And yet the unique words help identify each type as separate, and behaviourly distinct… Often temporally distinct, as well.

I see this confusion not only among my patients but even with some of the non-specialist doctors who are confronted with a pathology report containing words like adenocarcinoma in situ, or perhaps just carcinoma in situ describing the biopsy of a cervix from a woman sent to my Colposcopy Clinic because of an abnormal pap smear. The cancer (carcinoma) word is there for sure, but some how the suffix in situ -meaning not invasive, or ‘contained’ is missed. And even if it is seen and deciphered, the phrase seems to imply that it is in fact a cancer that has been serendipitiously discovered before it has spread… although it is not! But so emotionally charged is the word -the idea of a cell, a process out of control- that it automatically elicits such a response; it’s almost involuntary: the quick withdrawl of a finger from a flame even before the brain has had time to process the sensation. A triumph of atavism over intellect.

While not necessarily, nor even predictably so, we like to think of cancer as having a precursor. In other words, we like to think there are early stages on its path to malignancy where the cell is not yet out of control and where this identification may allow modification -or elimination- of its otherwise inexorable progress. The explanation often chosen is that in its normal state, a cell is controlled by a series of checks and balances: how it grows and how quickly; how it differentiates and under what circumstances; how it adapts to changing conditions; how and when it dies and under what influences or instructions, and so on. If that control is lost -or even modified- the cell will undergo changes accordingly. And thus, the malignant transformation theory goes, at the beginning of the journey it is under control, and at the end of the road, out of control. So, the trick is to find it as it travels along that route -before it arrives at the other end.

And just as the destination is not the same as the stops along the way, those intermediate steps should not have the same names. If I start in Vancouver and end up in Calgary, why should I call Kelowna, or Banff pre-Calgaries? No, it would be too confusing, not to say misleading. They are what they are… And what they are not is Calgary.

We need different words, new words, words untainted by the whiff of dread, and unsullied by the expectation of disaster. “What’s in a name? That which we call a rose by any other name would smell as sweet.”… Really, Juliet? “The lady doth protest too much, methinks”.