Tag Archives: medical ethics

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The Doors of Persuasion

The Doors of Perception, by Aldous Huxley -I loved that book; I read it when I was a teenager and was intrigued by the idea that there could be doors to abstractions as well as to rooms -doors to other areas, other places. Invisible portals that existed alongside more tangible things, and yet magical, somehow -like the door to Communication.

Communication is such an obvious and basic requirement to enable us to function that it is often invisible until pointed out. Almost everything we do is a form of communication; writing, creating, building -perhaps even imagining- are all done for someone else to notice –despite our ego-dominant protestations to the contrary. We, none of us, live in a vacuum –nor would we be able to, even if we mistakenly thought we might like to try it for a while.

No, the need to communicate is a given; we are social creatures. And there are many reasons for it: to reach out and feel the presence of another is a major one -to share the solitude we all inhabit and reassure ourselves that we are not alone.

And yet the other main purpose of communication –the imparting of information- can be more difficult. Is more difficult. We are all unique, and we guard the differences behind a variety of walls: culture, education, gender… There are so many ways. So many reasons. So many locks on so many doors. The art of communication has always involved the art of persuasion; to open a door, you must first want to open it -and trust that what is on the other side is neither harmful, nor antithetical to what you have become accustomed to, or are able to accept. Willing to accept.

In medicine, to open doors, we have often relied on the magic of arcane knowledge. But although communication through authority can force, it cannot persuade. Cannot convince people that what we advise is necessarily in their best interest, especially if the advice flies in the face of what they have always believed, what those around them have always lived, or what their culture or milieu has always prohibited. There is always other advice, other authorities they can consult that harmonize more readily with what they have been taught, so why should Western Medicine, as we have come to classify ourselves, be specially privileged?

I’m not convinced that in all cases, and in all circumstances it should be. There is usually not one answer that suffices, not just one approach to a problem. But if someone has come to a doctor for advice, or more unfortunately, has been swept into his purview through circumstances not of her choosing, it would be helpful to approach the issue with all the respect it demands. The trust one engenders as the doctor is assigned; it has not yet been earned on that first encounter. Authority of the sort we as doctors possess breaks down rapidly when it attempts to enforce an opinion. Contradicts a belief.

If I, for example, say that something is my belief, I may be closing a door unless the person to whom it is addressed already shares that opinion. Especially if uttered in a fashion or in a circumstance that negates the other person’s opinion -makes them lose face, or does not allow for a compromise that permits their own beliefs, and makes allowances for their own cultural practices. I am not talking life-and-death situations where emergency surgery is required to remove a ruptured appendix, say, or an antibiotic is needed to rescue the body from an overwhelming sepsis… More the situation where there may well be other options –some, perhaps not as appropriate or effective, but where the choice could still be construed as a matter of opinion –mine.

Each of us is the agent of our own lives and we should be free to decide for ourselves what path to walk. Some choices may be unwise and later we may wish we had chosen something else, but wherever possible, the choice should not be forced upon us. And indeed, one of the major premises of medical ethics forbids just that: the principle of autonomy –we should be free to choose whatever option we wish, even if the doctors disagree.

So, if we feel persuaded about the validity of our own beliefs, our own view of the world, it behooves us to unlock the doors of persuasion, not coercion. We are not always right –and that is surely not the point- but we have the best interests of our patients at heart and believe we can help. We do that by earning their trust, their respect, and their confidence. The object, after all, is not to prove that they are wrong and we are correct, but rather to help them to see that, in the face of the legion choices they could make, the one we suggest is most likely to produce the results we both desire.

I sometimes find that is the hardest part. It is difficult for me to listen sensitively to a monologue on ‘cleansing’, say, when I do not accept the thesis that disease is caused by toxins in the gut that need to be removed. It smacks too much of bloodletting, or leeches, of purgatives and enemas, of spells cast on the unwary… Attestations that the poor heart would fain deny, yet dare not. Even placebos help for a while, after all -it is the kingdom of Hope.

But it is not enough to merely try to keep an open mind -as the King says in Hamlet: My words fly up, my thoughts remain below: Words without thoughts never to heaven go. The object, where ever possible, is to stop for a moment to listen -no matter what is said. There is often fear in the other voice. And it’s a dare of sorts that the patient issues: ‘Prove me wrong; convince me if you can -I need something- but first, listen, then explain your point of view. Let me believe I have been heard…’

I want to believe that hope springs eternal in both our breasts.

 

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Rethinking Placebos

Placebo. I love the word; it comes from the Latin verb placere: to please, and in the first person future indicative –placebo– translates as ‘I will please’. Wonderful.

I’ve been thinking about it a lot lately, probably since rereading a Dec. 31/14 article in Medscape entitled ‘Should Doctors Use More Placebos?’ http://www.medscape.com/viewarticle/835197 The answer, of course, is ambiguous –no one seems to want to commit to the use of a technique favoured in the days when there were few other options; times when there were no antibiotics, no condition-specific medications –no detailed knowledge of the physiology of the body, let alone diseases. Those were times when naming the problem and being able to give a likely prognosis was an important part of Medicine. I suppose it still is. But the other, equally important component nowadays, of course, is solving the problem so named –solving, as well as hopefully curing it with specifically targeted medications or therapies.

Placebos have usually been construed as inert, essentially harmless substances with little or no known properties that might otherwise be helpful in restoring bodily health. No pharmacological effect… So why would anyone wish to use them anymore? Or do we?

In this informed era of medical ethics –and of course, social media- would it even be possible to use placebo treatment, except, maybe, in a study where a treatment is being compared to no -or likely ineffective- treatment (placebo treatment) and where the participants are unaware which substance they are receiving (so as not to bias the results) and have understood and accepted this? Not something likely to occur in the average visit to a doctor’s office for an illness.

And the ethics that need to be considered? Well, amongst others, the concept of autonomy –the right of an individual to make both their own treatment decision and an informed choice. And then, of course, there is the ethical requirement for Informed Consent. How can you give someone a treatment without telling her that you may well end up using something that is pharmacologically inert? A non-medication, as it were.

A placebo is usually a trick –you think you have been given something specifically designed to help; you take it on trust; you have faith in the doctor… If you found out that what you had been given –lied to about, in fact- was inert, wouldn’t that undermine your confidence, and especially your trust, in that doctor? Even if it worked? Or maybe especially if it worked –it would mean he thought your condition was more psychological than physiological –i.e. ‘all in your head’. Not very likely to foster a continuing relationship.

But what if the doctor told you he was going to use a placebo for your condition? Would it work if you knew? Well, here’s where it can get interesting; there is a difference between using a placebo and using the placebo effect: the approach to the patient matters as well as what is given to attack the problem. Such things as actually hearing the patient –listening to what they have to say- rather than immediately reaching for the prescription pad; being reassuring and sympathetic. Friendly. Understanding. The demeanour and hope with which any treatment is administered has been shown to effect the results –the art of Medicine.

But nowadays, we all know about this. The fact that there is some theatre to medicine, and a play of characters is not a secret –although I suspect that most of us prefer not to think about it when we ourselves have an illness. The play within the play…

It got me thinking about placebos in my specialty, though. Are there any placebos in gynaecology, for instance, and do we ever use them? We certainly use the placebo effect in obstetrics –we are constantly reassuring our patients about the never-ending and always-changing symptoms occasioned by their growing bodies. Most of them don’t need investigations or tests- nor do they need any specific medication -just an acknowledgment by the doctor that whatever the patient has noticed is not something to be worried about. It is not something malevolent, nor likely to affect the baby, but merely something that happens in pregnancy –part of the spectrum. Something to be expected. It’s a trust issue. That’s why they came to you after all.

And what about gynaecology? All medicine involves placebo effects –we’ve just discussed that- but what about placebos? Are we kidding ourselves to think that gyaecology is exempt from their use? I suppose it depends on how you define a placebo. As we’ve already seen, a placebo is classically defined as a substance that is not likely to have any measurable pharmacological effects and so is considered inert. But what about a substance that is not yet proven by scientists to have an effect –for example by well-designed studies that compare various treatments? Of course, it may simply be that no one has actually studied the substance so far; there are many complementary and alternative medicines that Western Medicine has not subjected to analysis. So their use by the doctor would not necessarily be as a therapy, but maybe as an acquiescence to a patient’s request, in the absence, perhaps, of any other recognized treatment options.

How about a substance that has some effects, and yet likely not enough, nor sufficiently consistently to be considered a mainstay treatment, but which might be sold, say, in a health food store? Some of the phytoestrogens found in materials like clover or soy have estrogenic effects, but may attach weakly or ineffectively to certain estrogen receptors -and in some organs but not others…

And then there are medications that are useful for other conditions –perhaps related, but not necessarily so- but are re-packaged for a new life. The use of ovulation inducers in infertility treatment, even when the patient is known to be ovulating –a just-in-case therapy. Or an antibiotic for a new-onset, ultrasound negative –but as yet undiagnosed- pelvic pain in a woman when she shows up in a busy emergency department. Maybe it’s an infection… Or vitamin pill use for the busy woman who doesn’t have time for a healthy diet every day. It can’t hurt and it may help… Surely these are placebos.

Or substances that have switched their roles over the years –were they inadvertent placebos that have been since promoted? Acetylsalicylic acid (ASA) was once only considered a pain reliever and was used for menstrual cramps. It seemed to help patients cope with the period but this was assumed to be only because of the pain relief. So it was a placebo for coping, a therapy for pain. Then, because it was later discovered to be an anti-prostaglandin –which is a chemical mediator of inflammation and has a direct effect on the flow through blood vessels (and hence one cause for increased bleeding and cramping with periods because of dilated blood vessels in the area)- ASA, or at least more modern analogues of antiprostaglandins such as ibuprofen, was reassigned to a new function. A new, non-placebo job, as it were. So, although it did one job at first, was it an unsuspecting placebo that actually did two jobs? Is that a temporal placebo? An interesting philosophical conundrum –but I suspect I am stretching the concept beyond any useful application.

Maybe we’re looking at the whole idea of placebos the wrong way. In our data-glutted age where information is conflated with knowledge perhaps we need a concept that defies mere illumination and transcends erudition. Something that is so embedded in the weft of context that it disappears in the very act of searching for it –an unsolvable Where’s Waldo. Sometimes our need for elucidation of every aspect of the world we live in is self-defeating. Maybe –just maybe- we don’t need to know where the geese go when they disappear through clouds that gird the mountain tops. Just that they come back every year. ..Somehow.

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Uterine Transplants

I just knew it was going to happen; I could feel it in the air: a live and healthy baby delivered from a transplanted uterus.

It was the womb’s turn. After all, people have been trying to transplant stuff since anatomy began. Unfortunately, before the concepts of physiology, infection and immune rejection were appreciated, they all failed. Miserably.

There were exceptions, of course, such as the successful kidney transplant between identical twins in 1954 -where their immune systems were obviously identical as well- but until the ability to avoid the toxicity of anti-rejection drugs was improved, organ exchanges were limited to the desperate or the foolhardy.

A few solitary successes occurred late in the 19th century with skin grafting, but until good immune suppressors like cyclosporin (1970) were developed, most organs –that is to say, most patients– didn’t survive for more than two or three weeks.

And then it took off. Kidney transplants are now routine; heart transplants -while more dramatic because of the need for a healthy organ from an individual who is unfortunately unable to use it any more- no longer garner headlines like Dr. Christian Barnard’s first success in 1967.

And the list of organs being transplanted is beginning to read like an anatomy textbook. Everything from pancreas to lung, combo packs like heart/lung, and even an entire face in 2013. If you can name it, somebody somewhere is trying to transplant it. So it was surprising that the poor uterus was left sitting in the shadows for so long.

In fairness, though, it had been attempted several times before in various medical centers, with little success –ie  ability to do what the uterus was designed to do: incubate and deliver a  live, healthy baby. Not until the 2013 transplant in Gothenburg Sweden, with Dr. Brannstrom’s surgical team was a live baby born from a uterus a year after it was installed. Everything seemed to work –the recipient began to menstruate regularly- so one year after the transplant, having cryopreserved an embryo beforehand, it was placed into the uterus and followed closely as it developed.

http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(14)61728-1/abstract

The baby was born prematurely (at 31 weeks and 5 days, rather than at the average 40 weeks) because, although blood supply to the uterus was apparently normal, the patient developed pre-eclampsia (pregnancy-related high blood pressure) and there were some problems with the baby’s heart rate that apparently mandated delivery.

Were these complications the result of the transplanted organ (the donor was an unrelated 61 year old post-menopausal woman), the immosuppressants (she was on a triple therapy consisting of tacrolimus, azathioprine, and corticosteroids), or just bad luck? And would such a transplant be able to function normally –like a transplanted heart, say- and contract efficiently enough to enable labour and vaginal delivery? Or would a caesarian section be required in all cases? It’s probably too early to say.

So congratulations to the parents and the transplant team. Fortunately, the need for uterine transplantation is uncommon, and adoption, or even surrogacy remain as other less drastic options. But it seems to me there are issues that, despite the success, have yet to be adequately addressed.

Ethical issues, for one thing. Unlike, say heart or kidney transplants where death may ensue if transplantation is not available in a timely fashion, the uterus is not essential for the continuation of life. And the procedure entails sophisticated, difficult and risky surgery that is frought with possible life-theatening complications in and of itself –including, of course, rejection of the organ despite the immunosuppressants. The surgery, by the way, is far more arduous and byzantine than the routine hysterectomies that are over-performed around the globe –extra tissue has to be obtained along with additional dissection to be able to reconnect the arteries and veins efficiently. So both donor and recipient are at increased risks…

But what troubles me the most I suppose, are the possible long term effects of the immunosuppressants on the developing foetus growing inside the transplanted organ. Azathioprine, for example. It interferes with DNA synthesis, and inhibits the proliferation of quickly growing cells… That seems a lot like what needs to happen in a rapidly growing foetus, doesn’t it? Azathioprine is a pregnancy Category D substance: to be used in life-threatening emergencies only when no safer drug is available. And there is positive evidence of human foetal risk. Even tacrolimus doesn’t have a lot of available human studies in pregnancy.

No doubt safer and more predictable immunosuppressants will be found, but for now I remain concerned that we may be trading something away. Just because we can do something, doesn’t mean we should. Unlike other organ transplants where the risk is assumed by the recipient alone, uterine transplants for reproduction share the risks with a rapidly developing and vulnerable foetus which might not manifest any problems until years in the future.

I realize I may be dismissed as a male Cassandra, a person who cannot see dawn through the warp and weft of the cobwebs of his past, but sometimes we have to stand back for a moment. Sit down and think things through. Decide whether we’ve gained more than we’ve lost, and whether it will be too late to change our minds if and when some damage is revealed.

In this case, one would be well to think of Mabeth’s dilemma:

I have no spur to prick the sides of my intent, but only Vaulting ambition, which o’erleaps itself

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Non-Invasive Prenatal Testing

Chromosomally derived anomalies have been with us for millenia –maintaining structural and functional integrity is obviously difficult when you think about it. We humans have 46 chromosomes that must continually divide and reproduce unerring copies of themselves as they issue unique and contextual instructions for cell development or maintenance.

The functional components of chromosomes are called genes and we have around 20,000-30,000 of them, each one built from smaller base pairs like words in a sentence. And depending on the chromosome, each strand of DNA has well over a hundred million base pairs to supervise. It doesn’t take too much imagination to realize that rearranging words in such a sentence, or letters in each word, can alter its meaning. Jumble its information – or even destroy its function…

Throughout recorded history, there has been a recognition that some individuals lacked the same intellectual or emotional attributes as the rest of the community, and yet these people still had a role in the society. They were tolerated and often cherished members of the group and contributed to the weft and warp of the social fabric. Every town had its Village Idiot, to use the ancient (and non-revisionist) term; every village had its special people…

It would seem we live in different times, however, and social values have shifted; there is an expectation of normalcy, if not perfection, in our offspring. The current thrust is early –prenatal– diagnosis of suspected anomalies so that the expectant parents can choose whether the issue lies within their comfort and capability zones.

Prenatal testing has undergone many sea-changes over the years as technology and attitudes have goaded each other. Early tests sought to detect only the most frequent genetic anomaly: Down syndrome –or trisomy 21. As time and ability progressed, more genetic abnormalities have received similar surveillance.

But accuracy of prediction has come under scrutiny of late. It is no longer acceptable merely to arouse suspicion of an abnormality. False positives (thinking the anomaly is present when it is not) and false negatives (not detecting the anomaly) each have their own consequences. Risk of error, in other words, needed to be minimized if decisions were to be reliably dependent on the results.

In Canada, there are currently three (and now four –the subject of this essay) options for prenatal screening of genetic abnormalities –still largely for trisomy 21 because it is by far the largest component of the pool of abnormalities:

  • First trimester screening –done between 11 and 14 weeks gestational age with a detection rate of 87-90% and a false +ve rate of 5%
  • Integrated prenatal screening– consisting of two parts: the first one the same as with first trimester screening and the second between 15 and 20 weeks gestational age. This has a detection rate of 87%-95% and a false +ve rate of 2 to 5%
  • Quad screening– done between 15-20 weeks but with a detection rate of only 81% and a false +ve rate of between 5 and 7%

These results are pretty good and statistically acceptable –unless, that is, a mother has to make an irrevocable decision based on them. There was a need for even more accuracy –less risk- and so technology again rose to the challenge: the Non-Invasive Prenatal Test (NIPT). This is a blood test taken from the mother that measures her baby’s DNA that is floating free in the part of her blood called plasma. It is being continually released into the maternal circulation (with a half-life of around 16 minutes), so it’s an up to date survey of the foetus. There is maternal DNA there though, and the fetal fraction of it is usually about 10% so, to be sure the result is representative, the fetal fraction measured has to be at least 4%… Confused? Well, just remember that it is most reliably measured after 10 weeks gestation and with no upper limit of gestational age; that it has a detection rate of over 98% and a false +ve rate of less than 0.3% (I’ve taken these figures from the June 2014 edition of JOGC).

There are some caveats, of course –there always are- and seemingly a variety of iterations of what can be measured. But by and large it seems close to ideal: high accuracy with minimal if any risk to mother or baby. It is still recommended that a result indicating a chromosomal anomaly be confirmed with an amniocentesis (taking a sample of fluid from around the baby in the uterus) for confirmation, however.

So why don’t we fully embrace NIPT and relegate the other tests to history –tests that were helpful in their time, but indirectly naïve on sober reflection? Well, apart from the current high cost which might preclude its equal availability to all strata of society, there are other ethical considerations. And although these same considerations obtain with any prenatal genetic test, with NIPT these are largely attributable to its accuracy; one could foresee a time when the recommendation for a corroborative amniocentesis to obviate any risk of false positivity might be rescinded, further decreasing the time available for thoughtful and reflective parental decision-making.

Autonomy is the right of an individual to make informed choices for herself. But the key word here is ‘informed’. This implies that the information that informs her is both relevant and appropriate information. And yet, by necessity, it is provided and constructed by others; it is drawn from social and political contexts that she may not share and the options it provides may reflect this. Relational autonomy is an ethical theory that considers the ramifications of those choices that are made available to her. More traditional views have tended to treat the person making decisions as an isolated unit; but in fact, she is embedded in her own -perhaps differing- culture that influences both the context and the situation in which she has to make her decision.

We do not all react the same to identical information, nor is the ability to make an informed choice simply a function of the amount of information available. Women and doctors have different data priorities. Even different message priorities. We all need time to sift through the context; we need time for processing our feelings. Our needs. Our connection to the simmering culture in which we swim.

And then there is the issue of what we want NIPT to detect. Access to fetal DNA offers boundless opportunities in the future for singling out other aspects of the chromosomes we wish to interrogate –whether with serious concerns: hereditary conditions like cystic fibrosis, for example, or with more broad-based anxieties such as concern about random mutations…

Other, more frivolous concerns such as sex selection or, in the forseeable future, even searches for –and hence management of- certain genetic traits, present a growing tension between individual autonomy and societal values. For that matter, even detection of the trisomies has engendered much controversy, let alone the prospect of finding and perhaps eliminating other abnormalities not shared by the majority. What is the expectation –perceived or otherwise- after an ‘abnormal’ test? And what is abnormal? What should we accept?

I suppose, ultimately, it is for each of us to decide. Of course Shakespeare offered his opinion long ago: Love looks not with the eyes, but with the mind. But are we still that wise? Or have time and circumstance changed that as well?

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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.

 

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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?

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Questions and Answers in Medicine

Questions, questions, questions… They are the scaffolding that surrounds any medical encounter. One could almost phrase it semi-mathematically: patient/doctor = question/answer. And the success of the relationship -at least at the start- is largely dependent on the answer part of the equation. Patients usually come armed with both a problem and questions about it. That is natural, but sometimes the latter are as thickly layered as bees around a hive and actually obscure the issue to be addressed. Not all questions have answers; not all problems have solutions -not at first, anyway and sometimes not at all. This seems all too often the case in obstetrics.

Many questions arise out of what seems at first to be mild, symptom-related curiosity: vague, and only occasionally experienced sensations in pregnancy such as, say, leg cramps, fatigue, or maybe even shortness of breath. Most are relatively common complaints, the causes of which are not well characterized and don’t admit of a detailed, scientifically validated explanation. Indeed the answers need sometimes to be experientially based and may therefore vary from patient to patient, and even doctor to doctor -a point readily noted by the more concerned couples who have often consulted friends with similar symptoms.

I have to admit that I sometimes feel evasive, or even fraudulent answering some questions as if I was in possession of the one correct answer: there may not be one. But I know that behind each question is a concern, a fear only thinly disguised with a smile, that there is something wrong with the pregnancy. And of course, sometimes there is, so each question has to be considered in the context of a reasonable differential diagnosis. The leg cramps could herald a phlebitis, the shortness of breath an infection, or even a pulmonary embolus. And nowadays the patient often knows this and seeks reassurance.

And of course, not everything is pregnancy-related: nausea and vomiting could be signs of a viral hepatitis, increased frequency of urination could be a bladder infection… Questions -problems- can be Hydra-headed; to view them in monochrome may be a mistake. There is a balance required: not every headache is a sign of pregnancy induced hypertension, nor every dizzy spell an anemia. Not every symptom is pathological, and as I am fond of telling my patients, pregnancy is not a disease.

Still… To miss something serious is unacceptable -incompetent, even- but to alarm unnecessarily has its consequences as well. There is a middle road, even with complex and alarming questions: it is to listen carefully and compassionately and to consider each query in context. Often the patient doesn’t want a detailed academic answer, just a thoughtful reassurance mindful of her own particular situation. The fact that a concerned stranger on the bus said that she looked a little pale, or perhaps puffy in the face calls for a different level answer than a question about newly acquired cramps early in the pregnancy. That much is fairly obvious.

But what may be less appreciated especially on a busy day in the office is that even trivial questions are asked for a reason. She may, in fact, already know -or intuit- the answer and feel silly bringing it up. But she needed to ask -just in case… And her concern deserves attention, not merely a quick, reflexive reassurance that might seem to her both insufficiently analysed and dismissive. Even pausing briefly before answering suggests a more detailed and therefore considered analysis of her worry.

Answering questions is a skill and one which benefits and matures with experience; one has to be mindful of the reason for the question, as well as the depth of the answer expected. It is an art; it should not be artful -we have politicians for that.