Of thinking too precisely on the event

The right not to know -now there’s an interesting concept in today’s competition for instant news, ‘breaking stories’, and the ever present titillation of factoids. It seems almost counterintuitive -why would anyone choose not to know something? Surely knowledge trumps ignorance. Surely Hamlet’s timeless question ‘Whethertis nobler in the mind to suffer the slings and arrows of outrageous fortune or to take arms against a sea of troubles and by opposing, end them?’ has been answered in the modern era: it is better to know what hides behind the door than to turn one’s back… Or is that just naïve? Hopelessly romantic?

And yet, at least in Medicine, there is the potential struggle between beneficence -promoting and advocating for the well-being of others and autonomy -the right of someone to determine their own fate. And when the two are in conflict, there is an ethical dilemma.

But what about the right not to know something? Something that neither party had any reason to anticipate, and of which ignorance could be disastrous? Does the knowledgeable party have an obligation to inform the other, even if they were instructed not to? In everyday affairs, that seems an unlikely scenario, but an interesting article in Aeon by the writer Emily Willingham outlines some examples from medical research that probably cross the line: https://aeon.co/ideas/the-right-to-know-or-not-know-the-data-from-medical-research

A blood sample targeting cholesterol for example, might show another, seemingly unrelated abnormality. Should your doctor tell you about it, even though the cholesterol value was normal? Of course she should, you would assume. ‘But what if the finding turned up in samples donated for medical research instead of taken for medical testing? … [The] UK Biobank offers a case in point. When participants submit samples to be mined for genetic information, they agree to receive no individual feedback about the results, and formally waive their right to know…’ But that seems unethical, does it not? ‘The reality is that the ‘right’ thing to do about these competing rights to know and not know – and to tell what you do know – varies depending on who’s guiding the discussion. For example, a clinician ordering a test and finding something incidental but worrisome is already in a patient-doctor relationship with at least a tacit agreement to inform. But a researcher collecting DNA samples for a big data biobank has formed no such relationship and made no such commitment.’

Still, there should be some way -perhaps a retroactive clause that would enable a researcher to inform. One way, for example, might be to recognize that ‘people who submit samples for research might benefit from the same process that’s provided to people undergoing genetic testing in the clinic. Genetic counselling is strongly recommended before such testing, and this kind of preparation for research participants could clarify their decisions as well. Investigators who engage with these data on the research side deserve similar preparation and attention to their rights. Before getting involved in such studies, they should be able to give informed consent to withholding findings that could affect a donor’s health. Study investigators should also be unable to link donors and results, removing the possibility of accidental informing, and lifting the burden of the knowledge.’

Of course, the problem doesn’t just start and stop with whether the study participant decides she doesn’t want to know, does it? If the problem has a genetic component, ‘what about the people who were never tested but who are genetic relatives to those with an identified risk or disease? … After all, your genes aren’t yours alone. You got them from your parents, and your biological children will get some of yours from you…  in reality, the revelations – and repercussions – can span generations.’

On a lighter note, I can’t help but be reminded of my friend Brien. Readers of some of my more retirement-centered feuilletons will recall that he is a rather eccentric individual who seems to enjoy living on his porch and watching the world go by, no matter the weather. Rain or shine, summer or winter, I see him ensconced in his seat with a beer in his hand and another one on the railing in case I happen by. A harmless sort, and barely noticed by those who amble past, he is not an infrastructure man. His porch ekes out an existence from day to day in terminal decline. Every time I visit, he assures me that because the sidewalk leading to the house is also deteriorating, it discourages unnecessary visitors. And those who brave the path -me, I suppose he means- know and accept the risks -especially of the dangerous and disintegrating steps onto the porch.

But the last time I was over there, I almost put my foot through a rotting board near his chair, and I felt it had gone too far; I thought he should know. “Brien,” I started, somewhat hesitantly, given his explicit instructions to avoid any criticism of his porchdom, “I just…”

But he silenced me with a regal wave of his beer-hand -a sure sign of displeasure. “You’re gonna tell me something bad, I just know it…”

“No… I was just going to suggest that…”

“Remember the rules, eh?”

Brien can be so annoying sometimes. I think he honestly believes that naming a problem -identifying it by whatever means- gives it the right, formerly denied to it -of existence. So I shrugged, and decided to acquiesce and similarly ignore its right to life. Autonomy, after all is a right as well.

I didn’t see Brien for a week or two, but when I next happened by, as I often do on my way to the store, he seemed unusually bulky on his chair. He was covered in a thick Hudson’s Bay blanket, of course, but I assumed the cold autumn wind had made him bring it out early this year.

He waved at me from the porch and told me not to worry about the steps anymore. And as I approached, I noticed they were brand new and ready for painting. In fact, as I neared the porch, I noticed some of the boards near his chair had been replaced as well.

“What’s going on?” I asked as soon as he handed me a beer.

He smiled and pulled back the blanket to show me the cast on his leg. “I decided to take your advice…”

“But, I never…”

He held up his hand to silence me. “Sometimes I can hear what you don’t say, G…” he interrupted, calling me by my nickname. “And just because I don’t want you to tell me, doesn’t mean I don’t want to know about it, eh?”

I’m still not sure I feel good about not telling him, though…

To Have, or not to Have

There are two worlds out there, two Magisteria. Two contrasting inclinations that pass each other on the street without a wave. Strangers who sometimes know each other well. They sit, unwittingly close to each other, in the waiting room of my office. They chat and smile obligingly, trusting that their ignorance of the other is no impediment to friendship, however brief. Indeed, there is no barrier, only a perspectival boundary: Weltanschauung.

And yet, I don’t want to make too much of the difference; it is often in flux, and can mutate even as we watch –Time has a way of adjusting viewpoints,  justifying decisions. We all try to vindicate ourselves in the end. Validation requires exculpation, does it not? Absolution in the eyes of those who matter…

So the stronger the tradition, the societal apologue, the more the justification and guilt assigned to those who stray from it. There is a sort of canniness in the collective –or at least strength. Acceptance… And it is easier to regress to the mean, than defy the group. Especially when it comes to attitudes towards pregnancy –or more specifically, the decision whether or not to have a baby.

I’ve just read an incredibly powerful  book, whose title captures some of the agony and guilt attending those who dare to deviate from societal expectations: Selfish, Shallow, and Self-Absorbed. It is a collection of 16 well-written and generally thoughtful essays -13 from women, and 3 from men- about choosing not to have children. None are from paedophobes; and only a few are from those who decry the notion of pregnancy in others. They are not outliers –except perhaps on a carefully constructed Bell Curve- nor could they be construed as deviant. Each has merely made a personal decision not to accept the tyranny of the Norm.

The essays took me back to the early days of my practice, when, as a newly minted obstetrician, the very idea that someone would not want to have a child at some stage in her life, was anathema… Well, perhaps curious would describe it better –memorable, at any rate. And yet, it was not unknown. It was always a difficult decision in those faraway times to accede to a request for sterilization in a young woman. Contraception, yes, and although this closed the door effectively, it did not lock it. We were suffocatingly parental in those days: we knew she might change her mind –she was young and inexperienced, after all. Like a child, she had to be protected; it was our responsibility to keep her future mutable and open. We –society- were the guardians of that door…

But there are surely two issues at play here. It is one thing to criticize a decision made prematurely –before the kaleidoscope of life has fully displayed, when the future is more chiaroscuroid, more obscure and uncertain- and another developed in that fullness of time when a considered, even retrospective analysis of the factors leading to the choice can bear fruit.

This, too, can seem arbitrary, I realize. Is there a difference between a thoughtful twenty-five year old woman who -in her mind at any rate- has weighed the risks and benefits of having a baby and decided against it, and a forty-five year old who, on looking back at the way her life has unfolded, is grateful and reconciled to never having a child? It is a vexing question on several levels, I think.

In these days of autonomy and non-maleficence when it is considered medically paternalistic and politically incorrect to suggest that a decision need not be vetted by experience, we forget the other ethical duty of a health care provider at our –her- peril: beneficence –serving the best interests of the patient. It seems to me that this entails both a mature and non-directive dialogue and a list of other, more malleable options that would not only adequately serve her needs, but would also allow for change at any stage. Some form of reliable and non-intrusive contraception, for example, might respect her desire to avoid pregnancy, and yet enable some flexibility should she change her mind, or harden her decision for a permanent solution.

But I have to confess that I am still troubled. On the one hand, it seems to me that wisdom is the ability to judge a situation based both on knowledge of what it entails, as well as experience of how it usually turned out in the past. It is why elders were revered in the days before the plethora of information technology that assails us today. I am trying not to be Ludditic here but what the elders contributed, that Google often does not, is digestion. Analysis over time and place. Evaluation. Information can be coloured by current trends and bent by traditional assumptions –but of course so can needs. We must not forget that.

I have always been leery of ‘facts’ divorced from context. Are they then still facts or do they inhabit some terra incognita we have yet to fully occupy? A territory of collation, a thesaurus that is able to list endless variations on whatever theme we decide applies to us, so we can pick and choose the reality we prefer?

It is not the decision to have, or not to have a child that should preoccupy us, but rather the reason it has been chosen. And for such an important life-changing resolution, the depth and –dare I say- maturity of  thought that has gone into the consideration is paramount. It is not, nor should be allowed to fall under, the purview of political correctness and thereby escape a more cautious and examined approach. There is no correct answer, no unquestionable myth that can justify any position. We may have a spur to prick the sides of our intent, to paraphrase Hamlet, but it is a different one for each of us. We must take care that we, and those we counsel, are not –Hamlet again- hoisted with our own petards.

Should IVF be denied to Obese Women?

Obesity has a long and chequered history. Different cultures have both defined it and viewed it differently: in some it was a sign of wealth and was seen as desirable; in others, a sign of weakness, dysfunction, sloth. I use the past tense advisedly, given the rise of fast food outlets throughout the world and their putative role in the rise of obesity in all social strata. Adiposity wears different clothes today.

The classification of weight is now largely dependent on measurement of the Body Mass Index (BMI) -(calculated by dividing the person’s mass -weight- in kilograms, by the square of their height in meters. i.e. M/H x H). In North America, at least, ‘Normal’ weight is less than 25; Overweight is 25-30; Obese is greater than 30. The levels assigned for each category are somewhat arbitrary, however, and various countries -perhaps reflecting differences in diet, genetics, or their own studies- have defined them quite differently.

Obesity, then, is a chimera -a culturally enhanced improvisation; there is little argument about the extremes, but much debate in the middle ground, and therefore about the value at which to begin an intervention -and the resultant stigmatization- if it is solely on the basis of BMI. Not all large people are unhealthy, and neither hypertension nor diabetes, for example, are restricted to that population. So, to base important judgements -with their attendant far-reaching effects- on the measurement of BMI alone is more of a societal bias, a cultural bigotry, than a well-founded and scientifically validated decision.

I am not arguing that excess weight is healthy -or even desirable- but suggesting that to justify treatment decisions on BMI alone risks applying generalizations that are useful when dealing with large populations, but inadequate when considering individuals. No one of us is the herd. And the distinction is an important one.

For example, there seems to be a constantly-shifting move afoot to deny fertility treatments -especially in vitro fertilization (IVF)- to obese women.  Canadian MDs consider denying fertility treatments to obese women   It is based, apparently, on several factors: success rates tend to be lower in this group; the procedure is technically more challenging, and the woman is more likely to suffer complications in the pregnancy that may jeopardize both her and the foetus. The fact that in some jurisdictions, the first one or two treatments may be covered by a government subsidy, suggests that there might also be a feeling that the taxpayer’s money could be better spent on projects more likely to succeed. Or perhaps on issues that benefit more of the electorate.

I have to admit I am conflicted in this. One likes to hope that funds -be they private or public- will be well spent. That there is a reasonable likelihood of success. That the risk/benefit ratio is weighted in favor of the funder. And if this is not the case, then it should be made perfectly clear at the start; the outlook honestly explained, lest expectations trump reality.  http://www.creatingafamily.org/blog/obese-women-banned-vitro-fertilization/

But hope is often unquenchable no matter the argument, so what is an infertility clinic to do? Obviously there have to be some standards for IVF. BMI may well be one of them, but as I have suggested, this is likely only a rough guide to success and seems to have discriminatory overtones, no matter the data.

In medical ethics, decisions are often guided by a few simple principles: Autonomy -the right of an individual to make an informed decision; Beneficence -promoting the health and well-being of others and attempting to serve their best interests; and Non-Maleficence -not intentionally doing them harm (primum non nocere). It is the last of these that seems the most problematic for the IVF clinics. Should they knowingly embark upon a treatment -an elective treatment at that- which may have adverse consequences for their patient? The argument has been raised that doctors don’t apply the same values with respect to dealing with, say, smokers or alcoholics that they do with obese infertile women -all of whose problems are often considered to be self-inflicted, at least by society at large. The argument, of course is specious: the condition of infertility, however unfortunate, is not comparable with emphysema, lung cancer, or liver failure…

I think that a more reasonable approach would be to divide the risks both to the obese woman and her foetus into what I will term heedless risk and assimilable risk. It would be irresponsible, for example, to consider IVF in an older woman, obese or not, with severe, unstable and longstanding insulin-requiring diabetes with hypertension and end stage renal failure -the risks are far too great and the outcome unpredictable at best. Contrast that with a large woman -otherwise healthy- whose only risk is her weight. Yes, there may be technical challenges for the IVF, and each of these would need to be assessed on its own merit and risk; and yes, obese women do have a higher likelihood of pregnancy complications, but so do normal weight women who have, say, pre-existing hypertension, or SLE (lupus). And what about obese women who have become pregnant on their own? We struggle through pregnancies with them…

So I suppose the issue is not so much the risk as the guilt of complicity. The sin of acquiescence: collusion with the woman’s dreams of having a baby. Of actively fostering it. Stepping out of the role of omniscient parent and into the character of enabler. But to see it this way, is to be blind to the other equally important, and yet often forgotten ethical principle: Autonomy. If the risk is assimilable, does the patient not have the right to participate in the decision? Is this not also a requirement of that third principle, Beneficence: serving what she perceives to be in her best interest?

It’s a difficult issue, to be sure, and there’s likely no algorithmically valid approach to its resolution. But in the end, we’re humans, not flow charts -our minds simply do not function well that way. Decisions are not unidimensional, because we are not. Let judgements be based not on the letter of the textbooks, not on the litany of complications, nor on the statistical analyses of non-players, non-actors in the drama. As with the Law, let us consider the spirit in which it was written; details are important, but so are people. Even if they happen to be obese.