Understanding Risk

There are more things in heaven and earth, Horatio, than are dreamt of in your philosophy. This quote from Hamlet has always stuck in my memory; it reminds me to be humble, especially in the face of the unknown. Uncertainty has always been anathema to most of us. We need explanations and we crave stability; anything falling short of those expectations leaves us feeling anxious. Suspicious. It’s why we have experts, after all.

The recent verdict of an Italian court that a group of scientists failed to adequately warn the citizens of L’Aquila of a deadly earthquake in 2009 is perhaps a case in point. That guilt could be assigned because the risk, although quantifiable, could not be accurately assimilated, means to me that it was meant as an indictment of Science and its methods. A vilification, really. That statistics are misunderstood is probably the explanation.

I don’t pretend to understand them myself, so I can see why things seem so mysterious. Saying there’s a 99% chance that something won’t happen this year, or this time, or in June, for example, means to most of us that it won’t happen. We’re willing to give weather forecasters some leeway, perhaps, but not experts that are supposed to help us avoid tragedy. After all, it’s their field; they’re supposed to know something about it…

Medicine is not exempt from this expectation either. Patients ask me what possible complications might happen with or after a particular operation -a simple question. I should know the answer. But the answer really depends on how it’s understood, doesn’t it? For example, if I state that there is a 1% chance, say, of needing a blood transfusion after a Caesarian section, that might be heard as “Really unlikely! You won’t need one unless things go very wrong.” But it could equally be heard as “Caesarian sections should not be undertaken lightly and things can go wrong.” Both are correct, and yet we hear what we need to hear. What we want to hear.

How unlikely should a risk be before it is not mentioned? Or should every risk be mentioned? Is it really helpful to tell a woman in labour with a baby in distress that there is a risk she could die during a Caesarian section, but that the baby could die if the surgery is not performed? Or that there is a -what?- small chance that she could end up with permanent paralysis if she has an epidural inserted to ease the pain of her labour? I agree that discussion of risks is important, of course, but I’m just wondering at what level it might become counter productive. Think of a map of a shoreline of a country. On a small scale it serves the purpose of indicating where the country lies in relation to its neighbours. A larger scale identifies harbours or perhaps small outcrops of land. At some stage as we increase the scale, however, it becomes unusable: boulders at the foot of trees growing at the edge appear, small indentations worn away by waves emerge; what appeared to be a smooth shoreline now seems to be a random squiggle of smaller and smaller indentations. They’re all part of the shoreline, of course, but the inclusion of more and more details obscures the original intent of the map.

I sympathize with the Italian scientists. Detailed description of the risks of each mode of delivery of a baby, for example, inevitably leads to closed loops. If I describe the possibility of maternal perineal injury from a vaginal birth (incontinence, painful scarring, infection -the list is interminable, depending on how minor the trauma)- I am then forced to describe the possible complications of the alternative: Caesarian Section. And depending on the level of seriousness of complications that is demanded, I am forced to admit that they are both dangerous procedures with unpredictable consequences. Now what? Select from the possible risks and consequences using the very statistics that were probably the source of the confusion in the first place?

I am and have always been in favour of full disclosure of risks and consequences. The equation of hazards, as it were, needs to be solved. And yet what is it that the patient is really asking? What were the citizens of L’Aquila asking? Translation is required: explanation in context. In the case of the patient asking whether or not to have an elective Caesarian, the answer may well be an exploration of why they needed to ask in the first place. Are they afraid of labour? Of pain? Of severe and irreparable injury?Addressing those issues is likely to be a more fruitful first step on the journey, than taking the one of playing with figures.

And in terms of the earthquake tragedy? How to negotiate that equation? I don’t know; I suppose it all comes down to meaningful, understandable and contextual communication. Perspective -both that of the public and the science. Respect.

Early Morning Musings

There are times -often early in the morning after just getting to bed and then being awakened again to go to the Operating Room for some emergency, or more commonly, the Case Room for a delivery- when I wonder why I chose the field I did. After all, I could have gone into Pathology where microscopes never phone, or maybe Dermatology where a rash can usually wait until daylight to be evaluated. Things seem so much worse in the middle of the night.

But then dawn rolls around and things don’t seem so bad. I reconsider and re-evaluate the malevolence of the night and in the new light, I find I have new thoughts. Fresh thoughts. Happy thoughts, though seen through the aching of fatigue and the haze of bleary, reddened eyes. I am, I realize again and again, a Morning person. I relish the colours that spill over the sky from the newly born sun; I look forward to the world self-lit. I am an unabashed pantheist with respect to the freshly washed day. And I realize anew what a privileged life I live and what I have still to learn.

There are daily happenings I struggle to express -little things perhaps, but deeply meaningful in their context. Profound, even. Like the delivery of a child in the wee small hours to a woman with a major cardiac anomaly -one that may have ended in death in a setting less prepared than ours. My role as an accoucheur was admittedly minor -a technician really- but still, I was caught up in the moment. The woman smiled so loudly when I handed her the healthy infant that I just had to say to the beaming husband that he really had a special wife. There was a language barrier to be sure, but he shook my hand, looked me in the eye and said “Of course she’s special!” as if it was so obvious it didn’t even need to be said. I had to turn away so he wouldn’t see the little tear forming in my eye.

Or the time, a world away in Newfoundland, when I tried to bring some Western Canadian Wisdom to a staunchly self-reliant culture. I was working in the small little village of St.Anthony at the Grenfell Mission -a mission dedicated to ‘improving the health, education, and social welfare of people in coastal Labrador and northern Newfoundland’. I was a freshly minted specialist and too full of training to be mindful of the situation. I’d just seen a middle-aged woman with extremely heavy and frequent menses. She’d come to see me along with her obviously concerned husband, a local fisherman. I did what I had been taught in the big city schools and proceeded to discuss the differential diagnosis with them and the various treatment options available. After what must have been a lengthy monologue I asked them what option they preferred. I remember they both looked at each other for the longest time, and then at me. “Well, the way I figures it,” the husband said glancing at his wife, “When my family’s hungry, I don’t ask them fish in my boat what they wants. I jes do what I needs to do, boy. So do what you needs to do; fix my wife!”

Sometimes a difficult decision has to be made, and although the situation mandates explaining the reasons to the patient and their loved ones, and their opinions canvassed, in the final analysis they expect me to make a decision in their best interest. They have no way of knowing all the background that goes into making the best decision; ultimately and for better or worse, the buck, the expert opinion, really does stop with me -and the treatment if they agree. It’s a weighty thing to have to be a final arbiter; after all, they may disagree and seek a second opinion. But ultimately, a decision must be made by somebody. And that’s what they want: however onerous the responsibility, most are seeking someone to take charge of the situation. To do something.

But you know, it’s not all death and taxes. There are some truly delightful moments, even in the dead of night. I had been following a friendly couple through their labour and in the course of my visits as the night wore on, I discovered that he was a violist in the Symphony Orchestra. Although they were playing that evening, he didn’t want to take the chance of missing the delivery of his first and anxiously awaited child. But in case she delivered early, he’d brought his viola and it sat in its little black shell in the corner. He never so much as glanced at it as far as I could tell. Unfortunately, labour did not progress as we had hoped and so somewhere around three A.M. I decided she needed a Caesarian Section. They were both disappointed, of course -so was I, in fact- but were both reassured by the ability of being together in the OR. And yet as I checked to make sure her epidural was working and then made the skin incision, I wondered aloud where he was. It had seemed so important to him to be there with her. I asked her about it. “Oh, don’t worry about him,” she said from behind the drapes. “He’s got it all planned.”

I could see the anaesthesiologist grinning behind his mask: he was obviously in on a surprise. For me, the only surprises so far were the father’s absence, and the fact that the doors to the OR were wide open -something that would never be allowed during the busy daytime hours. So I continued with the operation and in a few minutes extracted a big, healthy and screaming baby. Suddenly, echoing along the empty corridor outside I could hear a viola playing Happy Birthday. You can’t wipe your eyes when you are scrubbed -a nurse had to do it. But only after she’d wiped her own. I still can’t listen to the tune without a sigh and a deep breath.

My field is hard and at times difficult, but there are moments… Many of them, in fact.

Words

As time harvests the years and winnows my memories, I find I no longer sift through dictionaries looking for new and unusual words. The thrill of finding one is still there I suppose, but more often the discovery is in an interesting book or magazine and it is not so much the originality of the word as the novelty of its use -its evolution. And Medicine, as always, is rife with examples.

Of course some words needed to change completely and not merely evolve: Mongolism, for example, or maybe Venereal Disease. Anything that unfairly stigmatizes a person with the condition is appropriate for renewal -although I’m still puzzled about why Venereal is more offensive than Sexually Transmitted. Or for that matter, died than passed on. But I do not argue against euphemisms -they involve literal changes of words, new descriptions that better serve the currents of contemporary culture. I may not understand the reasons for the change, but eventually get used to them as accepted colloquy.

Some changes, however, are more difficult for me. The use of the word client instead of patient, for example, I find particularly vexing. I suppose this shows my age and era, but I still think of client as very much akin to customer –someone to whom one sells a product or a service. It implies qualitatively different expectations and relationship than would be present between, say, a store owner and someone who walks in the door to buy something. One expects service, yes, but relationship, no -or at least not the type of relationship necessary for the entrustment of life or limb: a personal, almost intimate relationship of belief, hope, and of course fear.

A comparison frequently utilized is with a lawyer; you become the client of a lawyer for advice and for assistance in matters pertaining to the law -neither requiring a particularly intimate relationship to accomplish. There needs to be trust, yes, but surely of a different type and magnitude than what is necessary to let another person -a stranger, by and large- tinker with your body, your health and your temple.

I know there is an argument that even to label someone a patient implies a power relationship and one that doesn’t admit of equality or sometimes even the ability to adjudicate the opinion sought and in particular the advice given. It is one-sided, and by and large non-negotiable. Client however, almost by default, purports to correct these defects by distancing the seeker and the giver by a more commercially understood transaction. The person signs a contract after an initial discussion, and both parties are thereby bound to whatever the agreement stipulates. I will  give you some money and you will give me a car, say. If you don’t, I understand that I can take action against you according to the terms of the contract that has not been fulfilled. In the case of a lawyer, it might be his advice; for a product, there is a warranty.

Ah, but there is one of the similarities with a doctor, you might say: I can sue him if he makes a mistake. He is for my health, what a lawyer is for the law. But if that is the basis for the use of the term client versus patient we had best be careful. The law is written and although open to different interpretations in some cases, is still the same law. Precedents may alter the way it is enforced, but it is still the Law and barring exceptional circumstances the outcome, with a little research perhaps, is usually determinable beforehand. The job of the lawyer is to apprise you of this beforehand and in some cases seek to alter the interpretation in your favour.

At first glance, this may seem similar to how the doctor operates: an investigation is conducted, a diagnosis obtained, and a treatment proposed -as with the law, all very logical and contingent. Except that a biological system is not subject to the same type of law as is a country. It is inherently variable, predictable only statistically; and even then, the context is different because of genetics, environment and personal choice of life-style. A person may have a heart disease -a heart attack, say- but so many factors may have contributed and continue to contribute to the problem that the necessary treatment will vary accordingly. And the outcome will vary as well. Underlying diabetes, smoking, blood pressure and obesity to name only a few, will continue to play a role in the outcome.

Like it or not, the person with the heart attack, is entering into a unique relationship with the “authority figure” -one that I suspect is entirely distinct from that with a lawyer, or a social worker, or a cosmetician… Or a teacher. Those with whom teachers interact, are pupils; the word is unique and the relationship recognizable. It does not denote inferiority or pejority any more than the word patient should. A pupil is a distinct, if evanescent, entity and so is a patient. Neither is intended as a permanent name, or an all-encompassing descriptive; it is merely an attempt to uniquely characterize a temporary relationship -one that admits of little need for further definition. For each there is a temporary abdication of personal power in exchange for something more important at the time.

I do not think of it as surrender of rights but rather a yielding of perspective, an exchange of fear and despair for hope and anticipation. It is a positive word that best describes a distinct alliance in a time of need and I, for one, will continue to use it.

How different are we?

As I get older, it occurs to me with increasing urgency that I do not necessarily inhabit the space that others do. Often I do not have the same beliefs or share the same customs; I value different things, organize my thoughts a different way; I see the world through eyes that have feasted and grown old on different sights. My experiences are necessarily unique, trapped as I am by genetics and circumstance. I should not claim to speak for anything or anybody but myself.

And yet I do. We all do. We speak from everything that has affected us, all that we have endured -or learned. We extrapolate from what has made us unique and try to make it encompass what we encounter, thinking that our own expectations and opinions are not only justified, but likely to be valuable and helpful to others. We long to meet ourselves in a crowd…

But this worries me as a doctor, charged as I am with helping others who cannot be the same as me nor want to. Why would they? What I offer them, what Medicine offers them, is a view-point, a world-view that may be at odds with their own. They come because they want help, and their need usually allows -requires- them to transcend their feelings for a while -help requires sacrifice. But even this necessity, however imperative, often stumbles at two nodes, two doors that are sometimes locked -or at least difficult to open.

The first is an impediment to seeking help in the first place, no matter how serious the problem. If the patient thinks my views are too distinct from hers, too disparate, she may not even seek help. In some contexts this concept is described as cultural safety. Simply put, will the person feel safe in disclosing her needs? Will her difference or her views be recognized and respected, or will they be marginalized and considered irrelevant, unimportant, or even silly? If she comes from a tradition that respects alternative therapies, say, -alternative to us, of course- or perhaps that prioritizes spirituality but expects this to be denigrated in her encounter with the doctor, is she even likely to make an appointment? If her friends tell her of racial, cultural, or socio-economic profiling at a particular hospital, or that the type or even quality of care seems to depend on what stereotype she fits, might this affect her decision to seek help, or at least delay it until she is desperate? I think so.

Or the if doctor is solidly imprisoned in his own views and so convinced of their truth and validity that he cannot or will not listen to your discomfort and try to see your problems as you do, will he be able to help even if you agree to see him? For many people, the concern, the fear, that their own opinions will be mocked, or not taken seriously is an impediment to treatment. Health, wellness, is in many respects subjective. How we feel about ourselves, how others feel about us is part of the equation that defines health. Disease apart, we are how we feel; we are the sum total of a multiplicity of parts that we somehow integrate into a functioning body, a sensing organism. Our opinion matters, if only to hold things together, grant them their eccentricities, tolerate their distinctive habits to which we have long grown accustomed. Who better to know me, than me?

A doctor ignores this at his -and your- peril. It is a difficult world for some to enter; some of us merely talk through a sort of window from the safety -the authority- of our office: encounters at a distance, diagnoses from the opposite side of the desk. Others pretend to understand but only outwardly -thoughts easily readable through body language by anyone nearby. There are a few doctors truly gifted with agape but most of us, try as we might, are creatures of our past.

And so what’s the answer? How can a doctor ever hope to help anyone? Surely each of us is an other, a stranger to anyone but ourselves. We all come from disparate backgrounds so what we hear is filtered, what we encounter: a confirmation bias; it makes us fallible and closed. And yet…

And yet if we take the time to listen to the other and listen with respectful curiosity -dignify their thoughts and opinions with our considered silence- we have come a long way. A hard part of illness is just being heard. After all, listening is how we form opinions in the first place; its how we learn; its how we connect; its how we understand… Listening enables relationship. It’s part of how we heal -a larger part than we may think.