What We Value

I think it’s about time I revisited the concept of ‘disability’, both in its description and in society at large. It seems to me that the word itself is too value-laden to accept at face value. We are all disabled in one way or another and yet we may not see ourselves like that. And why should we? Disability, like beauty, is in the eye of the beholder –or in this case, the beheld. I first wrote about this several years ago: https://musingsonwomenshealth.com/2012/08/31/antenatal-genetic-testing/

The concept is embedded in context, and like two colours mixed together, can result in something totally different. Totally unexpected –even if innocently mixed. I was reminded of this by another  BBC article on Down Syndrome and antenatal screening: http://www.bbc.com/news/magazine-37500189  Once again there was an acknowledgment that ‘”The whole essence of a good screening programme is the counselling you have before you even have the blood test done or the scan done,” says Alan Cameron, foetal medicine consultant at Queen Elizabeth Hospital in Glasgow.’ And, of course, ‘[…] all experts agree that the way a diagnosis of Down’s syndrome is presented can influence whether parents choose to continue with the pregnancy.’ Even unconscious biases affect the way counsellors present the evidence, and none of us is free of these, I fear. We are all tinted by the colours that surround us, after all.

And I suspect there’s no better place to experience colours than riding in a bus.

I happened to be sitting behind two young women, both of whom were carrying their babies in those little vertical hammocks on their chests that tend to wax and wane in popularity. They evidently were strangers, but as newly minted parents, they seemed anxious to brag and peek at each other’s baby.

“She’s gorgeous,” said the one sitting beside the window, glancing at the closed-eyed head breathing quietly in its tight little container on her seat-mate’s chest. I’m not sure how she ascertained the sex so easily, but maybe new mothers are more adept at that than the rest of us.

“Thank you,” said the other, risking a peek at the sleeping baby beside her. “So is yours,” she cooed, cuing a smile and a flutter of her eyes.

“His name is Joshua,” the window lady responded, as if it was essential to establish that from the start. “Names are important,” she added, more seriously. “It means ‘God is generous’, or something…” To be honest, she didn’t sound too certain.

Aisle-woman was silent for a moment. I couldn’t see her face, obviously, and it might have been rude to look, but I thought it seemed an awkward response. “That’s nice,” she said in a carefully neutralized tone, but that kind of thing is hard to determine when you’re sitting behind someone in a noisy bus. “My little sweetie is called Elizabeth…” I could hear the hesitation in her voice. “I don’t actually know what it means,” she admitted.

“It means God is satisfaction, I think,” window-woman said without a pause. “We were going to name him that –if he’d been a girl, I mean.”

“Oh.” Aisle-woman seemed stumped about how to reply, but her neck-language suggested she was none too comfortable with the God references in both names.

They were silent for a few streets, and then, window-woman, unable to contain herself, peeked at the other baby. “They all look so peaceful when they’re asleep, don’t they?”

The woman nodded and felt forced to reciprocate with a fleeting inspection of Joshua as he snored. I assume it was snoring, at any rate, because it was rhythmic and his mother didn’t seem to be doing it. Elizabeth’s mother reached over and loosened Joshua’s hammock with a finger, thinking that might have been the cause. It was an innocent gesture, meant to be helpful –a mother’s instinct in action- but Joshua’s mother immediately grabbed the offending finger.

“He’s okay,” she said, embarrassed at her protective reflex. “Joshua’s just a noisy sleeper, that’s all…”

Elizabeth’s mother stole another glance at Joshua and I could see the edge of her smile, even from behind. “I’m so sorry, I didn’t mean to interfere,” she said, and adjusted Elizabeth’s little hoodie, just in case. “I thought he looked a little puffy… I wondered if maybe it was the hammock.”

Joshua’s mother forced a smile and then turned to look out of the window. “He isn’t puffy; he looks just like yours,” she said in a soft little voice that I found hard to hear.

“I’m sorry,” Elizabeth’s mother said, touching the other’s shoulder gently. “I… I thought I was helping…”

When Joshua’s mother turned her head to respond, I could see a tear rolling down her cheek. She stroked Josh’s little cheek and the snoring stopped for a second or two. “They told us he’d be…different,” she said slowly, “But he’s really a very good baby, you know…” She stroked Joshua again when he seemed to be rousing, and he immediately relaxed and made some sucking sounds with his lips. “I know he meant well, and everything, but the doctor always looked so sad when he saw me during the pregnancy. You know, like he was trying to console me or something…”

I could see a little tear beginning to form in the eyes of Elizabeth’s mom now. “I’m so sorry,” she said as softly as she could over the rattle of the bus. “I didn’t mean…”

But the window-lady had already pulled the cord for the next stop and was starting to rise from her seat. “God really has been generous to us both,” I heard her say as she reached out and gently stroked her neighbor’s baby as she passed. “It’s just that I’m always going to be reminded of that, I guess…”

She hurried through the opened door and I could see her standing out there as the vehicle pulled away, caressing little Joshua but otherwise not moving… As if maybe the answer was another bus…

 

 

 

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The Medical Student

She was not old for a medical student I suppose, although her face spoke of experience far beyond her years. But how do you measure age in a profession that cherishes the wisdom and equanimity that so often accompany Time’s passage? No, she was not old, but nor did she possess the naïveté that so often colours the awkward period of youth; she was, in a way, just Maria: confident, inquisitive, but neither gullible nor easily swayed from an opinion once she had weighed the evidence.

Short, with straight brown hair to match, she was dressed in what I would call an unobtrusive fashion –not meant to draw attention to herself but to enable her to emerge from the shadows with dignity should it be required. Only the short white coat so indicative of her student status and which I suggested she remove before seeing patients, would have marked her as out of place in an office that otherwise spoke of the ordinary. I’ve always felt that patients would be more accepting of the student’s presence if they were perceived as being part of the process of consultation with a specialist, not an artifice. Not an appendage. Not an add-on.

Maria sat politely against the wall, legs crossed and a smile tattooed on her lips as she listened to the first of my patients describe how she had finally decided she needed another checkup and a pap smear. For some reason, her family doctor had not felt comfortable in acceding to her request. Maria studied her so intensely it made me nervous.

“What are you using for contraception?” I asked as part of the history.

Janet, who looked  forty or so, but was really 28, just shrugged. She was comfortable with the question; she was comfortable with men who asked them. “I try to get them to use condoms, but…” Maria’s eyes opened wide at this, but she refrained from saying anything. I could see it was an effort for her, though.

As I progressed through the history, it became obvious that Janet was struggling with many issues, but I was impressed that she was trying to solve them bit by bit. Life was not easy for her but she was obviously trying to take control of what little she could. I was just one stage in that process…

After I had examined her, done the pap smear and cultures for infection, and given her the form for the lab to take some blood to rule out other conditions to which her lifestyle had made her unduly susceptible, I sat her down in the office again to discuss her needs.

A broad smile creased her face and her eyes narrowed almost seductively. “Is this where you try to convince me to stop the drugs, and follow the straight and narrow, doc?” There was a fatalism in her tone; she’d heard it all before –many times. Too many times. “…‘Cause you know it’s not gonna happen. I’m just trying to keep myself alive until I decide to change. If I decide. Nobody understands…” Her expression didn’t waiver, but I could tell she was on the brink of tears as she reached for the faded coat she’d draped over the chair. “And there’s nothing you can do until I decide, you know.”

And she was right –all I could do was support her until she was ready. We lived on separate sides of a river that was so wide in most places that it couldn’t be bridged. I felt like reaching across the desk and touching her hand to show her I understood, but I stopped myself. However well-intentioned my gesture, it might be misinterpreted –it was a prologue for most of the men she had encountered… So I just smiled in a lame attempt at encouraging her. “If you ever need to talk, Janet…” I said as she stood up before we could discuss anything further. I don’t even know why I said that -it seemed so utterly inadequate to her needs. I told myself I was only a gynaecologist and that she would require far more than I could ever hope to offer. But I still felt humbled and my specialist arrogance melted away as she left the room.

But just as she was about to leave, she turned and smiled briefly at me. Not seductively –not even out of politeness- but there was gratitude in that smile. Maybe she was just happy that I hadn’t tried to change her like her GP, or that I was willing to wait for her -treat her like an adult capable of making her own decisions. I fancied I could see some hope in her eyes before they hardened to face the world outside.

I’d intended to engage Maria in the conversation with Janet but it all happened so quickly I didn’t get a chance.

Maria stared at me as Janet disappeared through the door. She seemed angry. “So what are you going to do now?” It was not said with kindness. It was not said out of curiosity; she had embedded an accusation in it. A condemnation. The tone was polite, but the insinuation was contempt. I was reminded of that speech by Macbeth: ‘Curses, not loud but deep, mouth-honour, breath which the poor heart would fain deny and dare not…

“Janet has to want to change,” I said. It was a weak reply, but I already felt depressed.

“And until then..?” She said it sweetly enough, but I could hear the anger in her voice.

I sighed and looked at her. “What would you do, Maria?”

I sensed she wanted to throw up her hands and pace around the room, but I could see she was trying to control herself. “Well, talk to her social worker, for one thing…”

“And tell her what, exactly? That Janet took a small first step to help herself? That she seems to be developing a little bit of insight? That I, for one, see the glimmerings of hope that she will change?”

Maria’s eyebrows shot up. “Change?” –she almost spit the word at me. “How can you say that? We’ve been facilitating her, not trying to help her!”

I took a deep breath and relaxed my face. Maria was not as mature as I had thought. “We’ve been listening to her, Maria.” I smiled to diffuse her eyes. “How often do you think somebody has actually listened to her before? Not tried to change her, warn her, or use her?” I softened my expression even more. “The initial step in any change is actually hearing what the other person has to say. Hearing what she thinks and why. Listening; not judging. Not continually interfering, continually trying to impose our idea of the world on her.”

Maria’s whole demeanour tensed with the injustice of it all. “But we didn’t even get a chance to listen! She walked out of here before…”

“Before I had a chance to advise her? Tell her what she should do?” I shook my head slowly.

“But…”

“But sometimes we have to be patient, Maria. Advise when asked; help when needed.” I shrugged to indicate how hard that was. “She may never change –never want to change. We need to try to understand that… Understand her.”

I don’t think Maria understood; I don’t think she felt her own opinion was acknowledged either. I could tell that in her eyes, I had failed as a doctor. Failed as a person. I had committed with her the same sin that I had committed with Janet: not acting on what I had heard.

Maybe she’s right; maybe one’s own principles should be subsumed in those generally held by a society. And yet… And yet I can’t help thinking of Shakespeare again -this time, Polonius in Hamlet: This above all: to thine own self be true, and it must follow, as the night the day, thou canst not then be false to any man… –or woman, in this case

If age has taught me anything, it is that we live in our own worlds for a reason… I think we must sit with the door open. And if Janet wanders back..? Well, I will be here.

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”.

HPV

Cancer of the uterine cervix is a sexually transmitted disease; it is the second most common cancer of women in the world and it is spread sexually. Who would have guessed? The clues were there all along, of course: it was more common in sex workers, and women who had become sexually active at an early age; it was rare in nuns… But it took a while to connect the dots -and for technology to catch up with suspicions: viruses couldn’t even be visualized until the invention of the electron microscope, although their existence was suspected much earlier using filters with holes too small for bacteria to pass through. And then their DNA had to be identified in cervical cancer cells… and classified. It was a long journey all right.

But sexual transmission? The jump from abnormal Pap smear to the bedroom was -and is- a hard sell.  The fact that more than 80% of sexually active humans have been exposed to the virus was hard enough, but add to that the knowledge that the vast majority of teenage infections will clear on their own because of the vigorous immune response at that age, and you have a recipe for confusion. Or complacency.

Cancer of the cervix is rare before the age of 25 -the virus has a long prodromal developmental period- so after telling women how important Pap smears were in preventing, or at least detecting, this infectious cancer, raising the age of the initial Pap smear from the time of first sexual activity to age 21 in North America, did little to foster understanding. And then playing with the frequency and mode of surveillance for the rest of the age groups… Well, it was almost a breach of trust; changing the rules after years of teaching was just not on.

I mention this only to put the contemporary problems of counselling young women into some perspective. Especially now that vaccination against some of the more common and troublesome varieties of Human Papilloma Virus is possible. Vaccination has always had its opponents, and HPV is no different. But for my practice, there seem to be two major questions that arise: the need for continuing screening after vaccination, and the need for vaccination if a woman has already had a pre-cancerous condition treated.

These are confusing, if not vexing questions. There are at least 15 types of HPV that cause cancer but only two major varieties that account for the vast majority of cases in the community: types 16 and 18 (they’re numbered, rather than given cutesy names). These are the strains that are incorporated into the current vaccines. So if a woman has already had dysplasia -the pre-cancerous condition caused by the virus- it will have been caused by only one of those types and she is still vulnerable to the other. And therefore she still needs to be vaccinated. I get asked this every day, I think. Fortunately the schools in my province have incorporated the HPV vaccination into the early grades at school -hopefully before sexual exposure- so the question may well be an anachronism in the foreseeable future.

But the need for continuing screening in a vaccinated population is more difficult to understand in an era brought up on the concept of herd immunity: the idea that the more people who are vaccinated, the less prevalent the virus, and hence the less chance of being exposed to it. What tends to get forgotten, however, is that there is never a completely protected group: we are a heterogeneous society with new, unprotected people entering it from outside; immunity may wane; less common strains or perhaps novel viruses might gain prevalence and not be incorporated into the contemporary vaccine products. No, there are many reasons not to let down the guard of vigilant surveillance.

But a problem still persists: HPV doesn’t behave at all like a sexually transmitted infection in the minds of most people. We have come to expect cause and effect to be temporally accountable: the unprotected sexual encounter last week results in identifiable symptoms this week. Blame is assignable; lessons are learned. But with HPV, cause and effect are often separated by uncharted and imponderable years of time. There are seldom symptoms, seldom acquired wisdom. No one -or everyone- seems culpable: a difficult take-home message indeed. As I have already suggested, the voyage from Pap to Prevention is a stormy one.

But maybe this is just a generational thing: what we find difficult to assimilate today, will be greeted with a knowledgeable shrug tomorrow. We are creatures of more than structural evolution; more than linear accrual. As Shakespeare says: We know what we are, but know not what we may be. Or even better: Lord, what fools these mortals be!

The Ethics of Counselling

Primum non nocere -First, do no harm. I remember the phrase was used in one of the first lectures I attended in medical school and it nested -sometimes uncomfortably- in my conscience as the lectures and the years progressed. It would signal me from the back seat in Pharmacology lectures and tug on my sleeve in Physiology labs when we would be asked to subject laboratory rats to unconscionable ‘experiments’ whose outcome was already known and whose purpose would have been questionable even had we been seeking a Nobel Prize rather than a passing grade.

It especially fought for my attention after I’d graduated, when my decisions would actually be accorded credence. I would be asked to see someone in pain -with endometriosis, say- who had decided she’d had enough and wanted a hysterectomy. Often she would have been aware of other options -medications or ablative surgeries- and have tried them all unsuccessfully; sometimes she might be speaking out of frustration or desperation. But in none of these situations would she have felt in control, a full and willing participant in her destiny, able to make a reasoned, or at least equitable decision for herself.

One might argue the role of the dispassionate physician here: the person who can consider the ramifications of each option, present them in a reasonable and sensitive fashion, and help the patient decide. And yet, one might also point out the possibility that the patient might be unable to make a truly informed decision for herself under duress. There’s a term used in Medical Ethics that we were also taught in medical school: non maleficence. This is a concept that suggests that it is important -no, necessary– to consider whether a particular decision might do more harm than good, no matter how well-intentioned. It is yet another version of the primum non nocere phrase that so influenced me.

If I feel the patient actually understands the ramifications of her decision, and has at least considered and then rejected other possible pathways, then I am more than willing to accede to her request and help in whatever way she feels would be in her best interest.

But I have always believed that informed, or at least insightful empowerment -if I dare use that overworked and voguish neologism- is the key to compassionate decision-making. It’s object is not so much to convince or direct, as to allow her to come to an appropriate and acceptable decision, as much as possible unencumbered by all the trappings and emotional accoutrements of pain and frustration… As I have already mentioned, the problem of counselling someone in dire straits is that her pain or anxiety, quite apart from its obvious distraction, often permeates her entire being and impedes her ability to look out for her own ultimate best interest. Sometimes, the person can hear nothing but her own suffering. Counsel has to be heard as well as given.

I’ve explored many techniques to help the person help herself: meditation, relaxing exercises, music… But apart from the latter, they do not lend themselves readily to a half-hour appointment in a busy gynaecological office. And although music is my constant companion through the day, it is often background noise, if heard at all, for the patient stressed by more immediate problems. Most are unwilling, or more likely, unable to believe that meditation or relaxing exercise, will contribute anything to the resolution of their particular issues. It is difficult for them to see through the fog of their distress, and in many circumstances they do not need to do so.

If the problem does not admit of any other solution, then action of some sort is required. If the patient has a ruptured ectopic pregnancy and shows up in the Emergency Department, the solution is obvious and immediate. If she is hemorrhaging from a miscarriage, an explanation of a reasonable approach to the problem and then a D&C is appropriate.

I am not so concerned about the conditions that do not beg for a decision, or ones that cannot be resolved in any other way -conditions for which choice is mandated by necessity. But for those afflictions for which options are available and for which none are paramount, there should be other constraints to the decisions made. These are questions of ethics again: autonomy -the patient has a right (and indeed a duty) to decide for herself, and beneficence –the doctor should act in the best interests of the patient. And sometimes this requires techniques to enable the patient to exercise this right, and the doctor to feel he is in fact acting in her best interests.

Hypnosis is one approach to this that lends itself to an office setting. It is not for everybody, nor is it necessarily attainable in each and every patient, however willing. But I feel that in my office at least, it should be a non-directional tool if it is used at all -one that seeks not to influence or counsel, but merely to engender some symptomatic relief. It is an easily teachable skill, and because the relaxation is so readily apparent to her once she has encountered it, probably an effective one that she may well decide to try again. And with some goal-direction.

I am reminded, however, of the time when I initially began to use the technique. I seemed to attract rather unfortunate referrals then. At first the referrals were for innocent things: stress relief, panic attacks… even smoking. I had to quickly disavow myself of these consultations: although gynaecology entails a lot of psychology, I don’t see myself as the answer to panic attacks.

Then, undiscouraged, they began to send me more difficult problems: warts (yes there exists a body of literature of immune enhancement to engender a bodily response to the viral scourge of warts, et alia), endometriosis, PMS… anything for which the family doctor felt she was losing the confidence of her patient.

I have always felt more comfortable dealing with topics for which I am nominally trained, so I attacked the gynaecological issues with contemporary skill and knowledge. Only on the third or fourth visit and when all else seemed to have failed would I delve into the alternative toolbox in desperation. Sometimes it worked; often it helped. Visualization was especially popular I remember. Endometriosis? Right: visualize a field of flowers and with each breath in, you pick some, and with every breath out, you throw them away. Yes, the flowers are endometriosis implants.

When planetary eco-consciousness took hold, I had to modify the picture, however and switched it to picking up litter on the street then depositing it in a suitable refuse container… Anyway, same idea, same results if they remained enthusiastic adherents. Placebo? I don’t know, but even placebo works for a while, doesn’t it?

The problems worsened from the die-hard family doctors, however. Elated by the success of diverting their problems to me I began to get referrals that really made no sense. One that stands out particularly colourfully in my mind was the woman who was sent to me because she was anxious.

At first I assumed there was a gynaecological reason for the visit, but she quickly informed me that she was actually healthy: normal non-painful periods, no mood swings, no pelvic pain… Her pap smears were even normal and up to date, and she’d just had a mammogram.

I was beginning to despair of helping her when she admitted the reason for her visit: she was running for public office in the Philippines and was anxious about getting up in front of a crowd and speaking. She’d heard about hypnosis and wanted to try it.  Although a little out of my line of work, I thought maybe I’d try a little standard hypnosis to alleviate her anxiety since she was in the office anyway.

She looked relieved and smiled at me. “Thank you doctor,” she said relaxing in her chair. “I’ve tried everything I could think of -even tranquilizers- but I’m still terrified each time I get up there to speak.”

Although I sometimes try to explore the reasons under hypnosis and help the patient to recognize what might reasonably be expected to work for them, I decided to ask her beforehand if there was anything in particular that  worried her about speaking in front of an audience.

She didn’t give it a moment’s thought. “Oh yes, doctor. It’s in the Philippines, you know…”

I nodded pleasantly, and assumed perhaps the venue, or maybe heckling from the crowd was her concern.

“And there’s a lot of opposition to my stance on Birth Control, you know.”

I assured her we run into the same thing on occasion even here. “Sometimes it’s hard taking a stand on something isn’t it? You can never please everybody, can you?” It was so banal a comment I immediately regretted saying it, but she seemed to take some solace from my words.

“No you can’t please everybody, it’s true. And I’m glad you understand; that’s exactly where my problem lies. It’s why I want you to teach me hypnosis.”

I smiled the doctor smile, satisfied, benevolent, convinced that I was perceptive and could recognize her difficulty despite our difference in cultures and gender. I could help.

“Yes,” she continued, ” Every time I get up to speak in front of a new crowd in a strange village I’m afraid I’m going to get shot.”

I believe in counselling and I try to take the time to listen for what they sometimes cannot verbalize. I like to believe I can make a difference, but I don’t think I really helped her, you know… Maybe I should have referred her to someone else, but she left the office happy. Beneficence sometimes trumps non-maleficence, I guess -even if it’s only in the beholder’s eyes.

Fibroids

I sometimes prefer to call them leiomyomas -it’s more descriptive of a condition that involves muscle cells- or even fibromas. I said this by way of beginning an explanation to a patient who was sent to me for them; she looked at me as if I had just sworn at her -belittled her condition. I hadn’t meant to…

“Hiding behind medical words, doc?” she said, unsuccessfully attempting a smile.

I suppose I was. Her mother had endured a hysterectomy for fibroids, her sister had developed them and was booked for surgery, and  a recent ultrasound had discovered  several 3-4 cm. nodules in her own uterus. Now I was trying to fool her with new words: a different type of fibroid that maybe you didn’t have to remove.  She’d looked them up, and talked with her family, and now was convinced that hers needed fixing too.

Not too long ago, that’s what you did with fibroids: you either removed the fibroids, or the organ that carried them. Period. They were clearly abnormal and shouldn’t be there in the first place. They pushed on things inside the abdomen, could grow really large -and, oh yes, they made you bleed. No, hemorrhage! End of story. And besides, for Marlene, it was a family tradition, a rite of passage into the next phase of womanhood: after the kids, the hysterectomy.

She seemed disappointed when I told her they were quite small, and that their location made it unlikely that they were contributing significantly to her heavy periods.

“Then why are my periods all over the map and heavy like this? When I was younger, they hardly showed.”

I tried to put fibroids into some perspective for her. “Well, first of all, fibroids are really very common. Up to 30% of caucasian women at thirty years of age have fibroids. That’s how I remember it,” I said, smiling, and dotted my pen on a diagram of a uterus I keep on my desk to illustrate the size they might be at that age. “And in some populations, genetics probably plays a big role and the figure might be as high as 50%.” She became all eyes.

“Fibroids are usually very sensitive to estrogen and so they tend to grow more rapidly in a woman’s mid to late forties when they get a lot of unopposed estrogen -estrogen that’s not being opposed by progesterone…” I could see I was losing her. “You’re what..?” I snuck a look at the chart. “Forty-eight?”

Her brow wrinkled. “Forty seven, doc.”

“Well, when you were twenty-seven, you probably ovulated each month and then your ovary would produce progesterone and…”

Her hands slipped onto the desk in front of her and she leaned over it and stared at me. “Doc, I’m not here to talk about what my ovary does or used to do. I’m here to talk about what my fibroids are doing now!”

She had a point.

“And more particularly, what you are going to do about my fibroids!”

“Well, I don’t think that…”

“My sister’s fibroids are small, too and she’s getting them out.” She sat back for a moment, convinced she’d scored a point. “She’s two years older than me and she’s got six.” Her face took on the determined look of someone  dealing with a small child. “How many have I got?”

I looked at the ultrasound report her family doctor had sent along with the consultation request. “It just says ‘multiple fibroids, the largest of which is three centimetres in diameter. They all appear to be intramural in position with no submucosal component.’  They usually only describe the biggest ones, because sometimes the others are too numerous to count.”

Her expression showed some interest. “Sub what?”

I showed her on the diagram that a submucosal fibroid juts into the lining cells of the uterine cavity. “They tend to be more of a cause for heavy periods than the ones that are growing in the middle of the muscle of the wall: that’s probably because they create an increased surface area where more endometrial cells can grow.” It seemed a good argument to me. “So your fibroids are small and not sticking into the uterine cavity.” I drew what I hoped was a convincing fibroid in the muscle wall, careful to keep it a decent distance from the lining cells in case she wanted to argue about surface areas.

“But I got a lot of ’em doc,” she said, almost proudly. “My sister only has six and she’s getting a hysterectomy.”

“Well,” I said, stalling for time -I could see the writing on the wall already. “There are other things we can do for fibroids…”

Her arms suddenly appeared across her chest as she pretended to listen politely. It was what you had to do at a doctor’s office sometimes. “Like what?” she said with her mouth, while her eyes dared me to find something acceptable to her and her family.

“Like embolization: cutting off the blood supply to the fibroids so they shrink down by about…”

But she was shaking her head vehemently. “Doesn’t sound natural!”

“Well, if we could get you to menopause without surgery that would be really natural -given that you have no symptoms except a recent onset of heavy periods, and there are…”

“No symptoms? What would you know about symptoms, doc?” she said, giving what she could see of me above the desk a critical once-over and rising to her feet. “I can see I’m wasting my time here,” she muttered, gathering up her belongings from where she had scattered them on the floor beside her chair. “I knew I shoulda gone to a woman!”

“Marlene,” I said to her back as I rose to see her to the door. “I was merely suggesting that there are options with fibroids; they don’t all have to end up being removed.”

She turned to face me, and I could see the muscles of her jaw twitching. I had obviously crossed some sort of threshold. “Doctor,” she said coldly, “Despite your age, you still haven’t learned when options are needed, and when they’re…” She paused to consider the word. “…Unnecessary and insulting. If I’d wanted a choice, I would have asked you!” And with that, she turned and walked out.

I’ve thought about this a lot and I’m still not certain whether she was right. For a choice to be truly that, shouldn’t it be made from a list of things that might also work -an informed choice, in other words? Wouldn’t it be irresponsible of me as a doctor merely to accede to the initial wishes without explaining what else is available?

It would be easier, I’ll admit, but I doubt if I could sleep at night…

Antenatal Genetic Testing

When I bring up the subject of antenatal genetic testing, most of my patients don’t even bat an eye: it’s just what you do nowadays. Of course you want to know as much about your unborn and developing baby as possible! But there are some -just a few- who look at me suspiciously, searching for a reason I suggested it on their first visit. Do I suspect something is not quite right? Are they high risk? I can see the questions on their faces before they answer. The woman will look at her husband with a worried expression, and he will stare down at his shoes. The real question they are struggling with is: What will we do if the test comes out abnormal? Will we terminate the pregnancy -or perhaps even more troubling- will we have to?

No, I don’t think they fear some legal or medical attempt at coercion for termination. I suspect some of them had not even  considered the possibility of an abnormal fetus. Why would they? After all, does one consider the possibility of an accident every time one gets in a car? Or crosses the street..? It is, in other words, a surprise that anyone would confront them with the risks. It’s supposed to be a happy time, a new life, a new journey. I think that what many of them fear is the unspoken assumption that if there is an abnormality, they will want to terminate: an expectation, not a requirement.

Societal expectations are stronger than we realize. It’s often only when we dare to run contrary to them that we feel the strength of the current. Try shopping in a grocery store with a wheelbarrow rather than the supplied shopping cart, or maybe less fancifully, showing up at an expensive restaurant wearing a tee-shirt. You can do either of these things without getting arrested, but would you? Would you whistle at the symphony? Society’s pressures may be subtle, but they are compelling; we are supposed to know what to do and then do it.

There are other pressures to conform that are sometimes even more difficult to spot. A recent study in one of my medical journals looked at how information for patients with abnormal genetic screening (blood tests, ultrasounds, or amniocentesis) was presented. Discussions about Down Syndrome in literature handed out to patients undergoing genetic screening, for example, were purportedly neutral to allow for untainted management choice options. But the information stressed the problems the Down syndrome child would encounter and the problems the parents would confront rather than -and not balanced by, say, the joys any parent might expect raising such a child -any child. At first glance, this seems beyond reproach: the parents need to know what to expect. And yet, if you read a pamphlet on a car you were considering purchasing, and it merely talked of its problems, what’s the chance you’d turn it down and look elsewhere?

Objectively considered, antenatal testing for all of its advantages, could be seen as a type of Eugenics process. Don’t get me wrong, I’m totally Pro Choice: the couple -the woman– should have the right of choice and no one else! And yet I’m struck by the attitude of many in the profession who seem to assume that antenatal screening is there to assure the parents of a good product. And if what it finds is something different -note the word different, as opposed to substandard, or even defective- well then… We are doctors and by definition we deal with health problems -illness, pain, suffering- and we see the world in those terms. It is hard to put that prejudice aside in counselling as much as we might wish. We, too, are affected by the societal currents. Just look at the difficulty we have -we all have- in dealing with expectations or even medical practice models in other cultures less like our own.

And it is difficult to transcend these, try as we might. We are the creations of our own society and its customs and expectations. We are what we have been accustomed to believe, and non-believers often seem odd, even alien. More often, however, we see them as simply being wrong and assume they need to be corrected. Or we convey in our words or expressions that it is their values that are at fault. And yet all choices are value-laden -even ours.

I don’t know that we can ever shed our cultural -our societal- heritage nor that we should even consider this necessary. But a heritage is a wealth of accumulated -and accumulating- customs, values and opinions. It is an ever-expanding, ever-changing treasure that defines who we are and what we think. It is never static, never ossified; and like a parent, should be open-armed, forgiving, and all-encompassing. It is how I would like to counsel those parents before they even receive their results -before they even decide whether or not to be tested.

In a way, it is me that is being tested.