Trust

Like time, trust is a difficult concept –easy enough to conceptualize, perhaps, but hard to define. To categorize. To understand. It is slippery, and slides through the fingers like water. As St. Thomas Aquinas said of time, you know what it is until someone asks you to be more specific. It is something, however, that seems to be essential  in many of our interactions –arguably none more so than in Medicine.

As a doctor, I could be accused of a confirmation bias I suppose –after all there are other relationships that require a high degree of whatever we understand to be involved in the concept of trust that might seem too numerous to list. That is true enough; trust pervades all levels of our daily lives, but I suspect we are likely more fastidious in entrusting our very existence –or the quality thereof- to an unknown person, especially since the interaction involves an unequal power relationship.

But it is a necessary trap, isn’t it? Sickness can be incapacitating and so we usually seek to alleviate it if possible, or mitigate the effects if not. Patients –the etymology of the word derives from the present participle of the Latin word suggesting ‘undergo’, or ‘suffer’- understandably seek what power they can exercise beforehand. If they have to place themselves in the hands of someone else, often a stranger, they can avail themselves of  information about the doctor beforehand. There are rating systems online that canvas opinions of interactions and results from the doctor in question to help with the decision. They may pre-engender that elusive trust -or at least, facilitate it in what are often constrained and inadequate time limits of a consultation visit.

My reputation –or lack of it- is therefore already packaged for a patient to open or discard as she sees fit. I am a sort of book already read and critiqued by someone else, dependent on the rating, even though I am –as is everybody else- a work in progress. The last chapters are yet to be written. But I have no such prescient knowledge about my patients –no way of knowing them beforehand. I must take what I get and write the next page…

And yet, that is not always the case: some, you get to know and enjoy; Sonia was one of those. I had seen her on and off for years, albeit at intervals that verged on epochs –often so long, in fact, that I sometimes assumed she was dividing her loyalty amongst several doctors. Sonia, I had realized long ago, saw medical opinions as bouquets from which she felt quite comfortable in selecting the most appealing flower.

She is a short, large woman, with a smile that says relax. Her hair has greyed over the years, but is invariably bunched on the top of her head and artfully fastened with a brightly coloured ribbon no doubt contrived to contrast with her clothes. It is probably a fashion statement; I see it as an idiosyncrasy, but I’m sure that my Rate-Your-Doctor file does not comment favorably on my own tastes in that area. My receptionists certainly don’t.

I have always liked Sonia. She seems to have that rare talent of being able to summarize her concerns succinctly and intelligently –almost as if she had written them down beforehand, memorized the salient features, and then practiced them over and over again until she was satisfied they made sense. Satisfied I would understand how important they were to her. Almost as if she had reused them many times…

But today, her referral letter suggested nothing new: fibroids -benign growths of the muscles of the uterus- with a past history of occasionally heavy periods. I had seen her for this a few years before and she had decided not to do anything about it, confident, as she had said, that the problems would go away with her menopause. I saw her watching me as I scrolled through the letter and the accompanying ultrasound on the computer screen.

I looked up at her from the monitor. She was dressed in a beautiful green, velvety dress like she was about to head for a cocktail party after the consultation. And, true to form, had fastened her long, unruly hair on her head with a neon bright, thick orange ribbon –like a trail marker tied to a bush in a forest… I buried the thought as soon as I noticed her smiling at my glance. “So..?”

“So, I’ve decided I want you to check my fibroids again,” she said as if I’d just canvassed her opinion the week before and was still trying to make up her mind about what to do. “Just my fibroids, that’s all.”

It was so like Sonia to want to help me to focus on the reason for her visit. I pulled up a comparison ultrasound done at her last visit three and a half years ago. She was 52 then and I had encouraged her decision at that time. Fortunately the fibroid –there was only one then and now- had not grown in the interval. But the lining cells of the uterus –the ones that are shed during a period- were now quite remarkably thickened. That had changed! I scanned the blood tests her family doctor had done a few weeks ago and they seemed to indicate that she had probably already gone through her menopause. So any bleeding now would be both unusual as well as worrisome –uterine cancer can present like that. I looked at what she’d told me on her last visit: heavy, but only sporadic bleeding. She’d refused to allow me to sample the cells in the uterus –an often painful but necessary procedure we commonly perform in the office but which could be done in the operating room under an anaesthetic if necessary. She’d promised to decide and come back on another day… But hadn’t.

“What about the bleeding, you had?” I said, mindful of her concerns about the biopsy I had suggested last time.

“You want to do a biopsy, don’t you?” she said with an almost flirtatious smile.

“Well, I’d like to make sure there are no abnormal cells in the uterus. The fibroid hasn’t grown, since we last met, but we never did that biopsy I’d suggested.”

She turned on another sweet smile and shrugged. “I’m sorry about that, but business took me out of town right after I saw you. Anyway, I had one done down in the United States and it was normal.”

I looked through the data her doctor had included with the referral, but I couldn’t find any pathology report or mention of the biopsy. “I can’t find any record of it here,” I said, busily scanning the screen to see if I’d missed anything.

“You won’t find it in there, I don’t think,” she said with a little toss of her head. I looked up. “The doctor down there just phoned me and said everything was okay, but never asked me where to send the results.”

That seemed a little unusual –if only for medicolegal purposes, doctors like to make sure results of tests are sent to the patient’s personal physician. “When was that?” I said, ready to enter it into her notes.

Another shrug. “I don’t know. Three years ago maybe?”

“Are you still bleeding, Sonia?” A simple question, I thought. But her face suddenly hardened. “Because a lot can change in three years…”

Her eyes tightened slightly and she looked at me suspiciously. “No, wait. I’m sure it was more recent…” She closed her eyes for a moment, obviously trying to decide what might be a better answer. She was now angry and her whole body stiffened.

I thought perhaps I could diffuse the situation. “Well, do you think you could ask that American doctor to send me the report of his or her biopsy at least?”

“You don’t trust me, do you doctor?”  She stood up and started to put on her coat. “And after all these years!”

“Sonia, let me just have a look at that report and see what it says…”

“I told you what it said,” she said through tense lips.

“And anyway, if you’re worried about another biopsy, if we have to do one, why don’t we do it in the hospital under a general anaesthetic..?”

Suddenly, her coat was on and she hurried to the door stopping only briefly to face me. Her face was an angry mask as it stared at me with a mixture of indignation and disbelief. “I’ve trusted you all these years to do what was best for me,” it said with a slow, almost sad shake of the head underneath. “But without trust…” She sighed loudly and walked stiffly but determinedly through the door without a backward glance.

Maybe she was right about the trust we shared, but I am still waiting for that report.

A Medical Dilemma

Here’s an outrageous assertion: there are some things that we just cannot control. Worse, sometimes they are undefineable – or at least so vague as to defy placing them on some scale or other. Ranking them in terms of importance either to us, or to others. Naming them for future reference. And if we cannot even assign a name, categorization is slippery, too.

All of us experience these uncontrollables. Sometimes we are suddenly enveloped –a fog that obscures direction so completely that we are lost, abandoned in a terrifying limbo- but as often, we wade in from familiar territory until, over our depth, we panic.

Doctors, among others, seem to gather these fractious elements like apples in a basket we scarcely notice we are carrying. Its not that we are incompetent –although circumstances often determine competency, don’t they? It is that situations pile up like obstacles -and detours, of necessity, require changes in direction. Unintended changes. Routes that, until they are explored and charted, make regaining the original destination difficult, if not time consuming.

A recent example from my practice: suppose, for a moment, you are a gynaecologist who has been referred a young woman with a benign tumour, a uterine fibroid, say. Even though fibroids –benign overgrowths of uterine muscle tissue- are fairly common in middle age, fibroids of significant size are unusual in young women. You are reassured by many factors in your investigations thus far, however: the ultrasound appearance, the blood tests measuring tumour markers, and her general good health. She has no pain; she has no symptoms, and the fibroid is small -only 1 cm in diameter. And, as important, a clinical examination does not hint of cancer, or demonstrate a lack of mobility of the lump in her pelvis that might indicate malignant attachments. She has simply been plucked from the realm everyday existence by a test done for something else but which found a tiny mass on her uterus.

She is barely out of her teens and as yet unattached, but dreams of a relationship and children –the proverbial girl next door. Her life has been turned upside down in an instant, and intimations of mortality that should not be collecting outside her door for years are suddenly apparent -a tree branch scratching her window in the night.

You discuss the features of fibroids, show her what she has on a diagram, then answer her questions and attempt to calm her down. Finally, after considering all the factors in her case, you speak to her of what you would recommend: observation and reassessment with another ultrasound in 6 months. Perhaps sooner if she develops any symptoms –pressure, or pain with sex, for example.

But she is worried, and all of your explanations have only served to reify the alien lump, hitherto hidden and unnoticed. It is real for her now, and it shouldn’t be there. The fact that her mother required a hysterectomy for them in her forties after years of heavy periods and pelvic pressure, has always weighed heavily on her.

You put down your pen, and listen as she tells you how she has researched the various therapeutic options online. You have already discussed them, of course, but have counselled against their use because of the small size of the lump. She smiles at you, because she agrees she is not a candidate. No, she wants the lump surgically removed –a myomectomy- before it gets too big. Before it causes symptoms. Before it interferes with becoming pregnant.

It is always difficult to disagree with a thoughtful person who presents her arguments in a cogent and reasonable fashion, but one always has to help the patient weigh the risks and the benefits more objectively. More contextually. Especially when you feel that surgery is not indicated. There are risks to surgery –major risks. Risks that are obviously assimilable under certain circumstances, but in your expert judgment, not hers. Fibroids grow slowly, so there is certainly time to consider less invasive options. Some sort of a compromise is in order.

You attempt to do this, to help her stand back and consider her request within the landscape of her actual needs. You try to help her to separate her concerns about the fibroids her mother had to have treated when she was much older, and her own situation.

But she is adamant. It can be done laparoscopically –belly-button surgery- so she will not even need much time off school, she points out.

When you still are hesitant, she breaks down in tears and heads for the door, sobbing. You relent and say you are willing to refer her for a second opinion, secretly hoping the other surgeon will be able to convince her to wait. But she is not listening any more; you have failed her.

But have you? At what point can failure be assigned? Does a reluctance to acquiesce to demands which are predicated on fear and misunderstanding constitute failure? Or is failure actually the opposite: going against your considered judgment to please the patient?

Years ago, I saw a very similar person –the daughter of a doctor in another part of the country she immediately informed me. She was adamant about wanting surgery –felt she was entitled to it, in fact. And encapsulated in the trappings of my recent specialist status, I was equally certain of my opposition to it. She was quite verbally abusive to me when I wouldn’t change my mind and also walked out of the office, but not in tears… She had a smirk on her face.

She was a heavy woman, a smoker, and although in her twenties, not in the best of health. We weren’t doing many difficult laparoscopies in those days, so any surgery would have required a large incision –her abdomen was obese and pendulous- and several days in hospital to recover. In her case the fibroid was only 2 cm in diameter –still small. Still observable over time.

I was puzzled by the expression on her face until I learned from my secretary that she was actually scheduled for a myomectomy with another surgeon in another town –but not for a month or two. She had been hoping I could schedule it sooner in my hospital.

I felt guilty, although I couldn’t really understand why. She was a poor operative risk despite her age, and the surgery was unnecessary anyway. I wondered whether I had made the correct decision, or whether I had been unduly influenced by her being rude to me when I’d tried to present the reasons for my opinion. Had pride clouded my judgement? Had she been right all along?

So, did I fail her? Or did the other surgeon? Were we both manipulated?

There is a condition called pulmonary embolism that occurs when a clot formed in a vein breaks free of its source and travels to the lungs to obstruct the blood supply. Some factors increase the risk of forming clots –major surgery, obesity, smoking, immobility… An embolus can kill if not treated immediately. Nowadays, we recognize these risks more readily and will prophylactically employ anticoagulation –blood thinners- to decrease the likelihood of clot formation. We ambulate patients more quickly and educate them about the risks.

In those days, I think we were more concerned with the risks of anticoagulation –bleeding internally, for example- than we are today. And so, especially in the non-teaching hospitals in small towns, prophylactic anticoagulation was not a routine standard of care. In fact, it was usually only considered in patients with more extreme and identifiable risks –cancers, for example. The regimens and even the choices of medication were limited then; surgeons were rightly as afraid of the treatment as of what it prevented. Risks had to be balanced. Managed.

I mention pulmonary embolus, because that patient died from one. I only found out weeks later when the surgeon phoned me after he discovered my consultation letter that the referring GP had forwarded to him. He was devastated, as were we all.

It’s easy to be revisionist in retrospect –especially years hence when protocols have changed, not to mention knowledge and available medications. We see the world through modern lenses and judge in the light of current knowledge. Things change. It was –and is- a tragedy that it happened. And it’s a burden which that family –and that surgeon- will carry forever. But in fairness, how critical can we be? Should we be? The assimilability of risks varies over time and things we might consider preventable nowadays, were understandably viewed differently then. Not only do things change, things happen.

Hopefully we learn from them.

 

 

 

 

 

 

 

 

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…

The surgical option

I’m not opposed to the surgical option, it’s just that there are many roads to Rome, and sometimes an indirect route is more satisfying. Don’t misunderstand; I’m an Ob/Gyn surgeon. It’s what I do, but not to the exclusion of everything else. There are times when surgery is necessary, life-saving, difficult to avoid. There are few ethical or acceptable options available in the case of a ruptured tubal pregnancy, for example. The patient presents in the emergency department bleeding internally, often in shock, sometimes requiring an immediate blood transfusion. Things do not go favourably for her if there is any delay in stopping the bleeding -operating, in other words.

On the other hand, fibroids -benign uterine muscle growths- present a different spectrum of choices. In the past -admittedly with fewer therapeutic tools at their disposal- surgery was the favored option if they were at all symptomatic. Medications meant to slow their growth or decrease vaginal bleeding, were fraught with side effects and seldom satisfactorily resolved the problem. Pain, anemia, or increasing symptoms from the ever-expanding tumours were often the only alternatives to surgery. And because there was a long-honoured tradition of removal, surgery was expected, maybe even desired. If all the female members of your family had hysterectomies, you might be inclined to view yours as inevitable, even if undesirable.

But there is a profound difference between life-saving surgery, and elective surgery. In the latter, options become important. The ability, and knowledge to be able to choose solutions, to see if they will work or even lessen the burden of the condition is an important step in problem solving. Moving from a simple attempt at life style or diet modification for, say, painful periods, to medications of increasing sophistication -and cost- to a hormone-containing intrauterine device, to laparoscopic investigation of the pain in the operating theatre might be a sensible route to follow. Or at least to know about.

For fibroids causing heavy menstrual bleeding -they don’t all do this, by the way- the use of antiprostaglandin medications (ibuprofen being the most widely known of these) to attempt to decrease the bleeding, maybe followed , if necessary, by the progesterone-containing intrauterine device if appropriate, and then if that fails, blocking off the blood supply to the artery that is responsible for providing nutrients to the growing fibroid (embolization)- all of these could be considered before resorting surgery.

Clearly there are features of each problem that might suggest other creative adaptations, although my point is not that they should be chosen, but rather acknowledged. We all have a right to determine our own unique paths through the thorns of life, and we should be given enough background and knowledge to allow us to make informed choices -choices whose logic and consequences we can understand. In  non-life threatening situations we may make a choice we regret, but if there are a series of progressively more serious options, we would probably be more accepting of their side-effects than if we had been forced into the treatment before we were ready.

Yes, I am a surgeon, and if surgery were the correct choice all along, then you will work your way along the path and eventually realize that for yourself. And come to accept it. It’s not my place to force you there. I am neither your father nor your boss. I do not possess absolute knowledge of the inevitable consequences of your actions. I see myself as merely a guide through a dark and often confusing forest, pointing out each fork in the road and offering suggestions that years of experience have taught me about the smoother trail.

It is, I hope, what doctors do.