Touch

Several years ago, I noticed a lump in my neck; I was no longer young, and I was terrified. The differential diagnosis was given to me by a colleague I greatly respected, but I had not expected the presentation to be so matter of fact. I don’t know what I had anticipated, but somehow there was a gap between her words and my condition, between her and me, I suppose. That something so important to me could be offered as mere words seemed inadequate. Incomplete. When I looked into her eyes hoping I had misheard, I could see the compassion and the empathy, but it was more like reading a story in a book: the information was there, the meaning clear, but it required an effort on my part to extract it. The story, in other words, was incomplete.

And then she did something that I will always remember -something that for me, proved I had gone to the right doctor: she reached across and touched the hand I had placed on her desk to steady myself. That little gesture of reassurance, that small reminder of the link we all share was enough to see me through that day. And it taught me something about medicine -no, about humanity. About Life.

Words are sometimes simply not enough; explanations, however thorough, are often incomplete.

There’s something magical about touch. I saw a patient in the office on whom I had recently operated. After asking her the usual questions about how she was feeling now that her much-anticipated and dreaded surgery was over, she settled back in her chair with a smile.

“You know, doctor,” she said, placing her hands on my desk for emphasis, “Everybody was so nice in the hospital… I never imagined it would be like that.”

I smiled in return, thinking she would comment on how thoroughly we had discussed the procedure the day after surgery, or the care we had taken to alleviate her pain… Maybe the smiles we had brought to her on our twice-daily rounds… Our constant reassurance, our patience in answering her questions… Our willingness to listen to her. “A hospital can be a frightening place, can’t it?” I said, more as a statement than a question.

She nodded. “Especially at night when all the visitors and doctors have left. It’s a time when you’re all alone in the darkness and those scary thoughts of cancer and bleeding and infection come swirling around like bees to a hive. I remember lying there, staring at the ceiling and worrying. I was wide awake despite the pain medications and a nurse came in to see how I was doing. She was young -about my granddaughter’s age maybe; I hadn’t seen her before. I guess she thought I would be asleep, but when she noticed my eyes were open, she came over to the bed. And you know the first thing she did?”

I could see a tear beginning to form in one of her eyes, so I leaned forward to show her I was listening.

“She took my hand and held it. And you know, for the first time in there, I realized I wasn’t alone. Somebody, a stranger, noticed that I was afraid and came over to comfort me. She didn’t say anything; she didn’t have to…”

There is a dark corridor we all must walk; touch is often inappropriate, damaging. And yet it can be therapeutic, a bridge between the empty, cold empire of words and the warm land of feeling, understanding and empathy. It is an opportunity for communication that can not be taught, only felt -the word itself a testament to its importance. No, I’m not advocating a radical new approach to medicine, an ill-advised crossing of the line. And I’m not so naive as to believe that it is always necessary as proof that a concern has registered. But a hand briefly resting on a shoulder on the way out of the door is sometimes okay, don’t you think?

Gender

I am a prisoner of my age, a hostage to my generation; I never thought I’d say that, but I suppose none of us do… We are as contemporary as our minds and experience will allow.

My own epiphany came, as I recall, when a patient engaged me in a discussion of gender. I had not intended to be controversial; neutrality -or at least impartiality- had been my intent in our exploration of her problem. I am, after all, a male meddling in female affairs so I must needs approach it as a visitor to a foreign land: respectful of its customs and willing to learn. I even used those words, I think, but it seemed they were the points of contention, however. Unbeknownst to me, I had innocently strayed into a minefield.

“Why do you have to feel as if you are a stranger?” she asked, eyes ablaze.

I thought about it for a moment, but I have to admit my response was weak. “I suppose because I am a man and was brought up as one…” I left the end of my sentence open, hoping she would not ask for further clarification. I was mistaken.

“But that’s just my point,” she said, rising briefly off her chair in her enthusiasm. “We’re both human, and despite the difference in our ages, both equally entitled.”

I could have wished she hadn’t felt the need to comment on our age difference, but entering into the spirit of the discussion, I put down my pen. “Entitled to..?”

Her face crinkled for a split second before she could rein it in. “Well, entitled was probably the wrong word; entitled implies that there is someone who is allowing, permitting, something. What I’m suggesting is that there should be no gender split…” My eyebrows must have moved, because the wrinkles reappeared on her face and stayed put. “No gender discrimination,” she added, as if that would clarify her meaning and win me over.

I don’t need to be convinced there is egregious gender discrimination throughout the world, but I suppose I assumed that the worst of it took place somewhere else: developing countries, or places still troubled by malaria -naive in the extreme, I  must confess, but a topic not often front-and-center in my everyday life. I believe in equality of opportunity for everybody, gender included, but I recognize that the platform from which I regard this is that of a white male in a position of relative authority and privilege -something so taken for granted that I no longer see it. Or don’t want to…

“I don’t see why the absence of a Y chromosome should relegate me to a particular role in society.”

She said it with such vehemence I couldn’t think of a suitable response at first. There are some things about our dealings with the world that are hard to express, much less analyse dispassionately. “How would you change things,” I asked finally, hoping she would understand my quandary.

She crossed her arms defiantly. “The very fact that you had to ask, is part of the problem,” she said, trying her best to smile politely. “How do you change things when the very institutions that you want to change, don’t think there is anything wrong?” She pinned me to the wall with eyes like spotlights. “Why should I have to behave a certain way, just because I happen to be female? Why is there an expectation that is constrained by gender? Limited by gender? Imprisoned by gender?”

She was becoming very excited and agitated across the desk from me, but all I could do was smile in what I hoped was a sympathetic way and show I was open to her indignation.

“I mean washrooms, for god’s sake!” She rolled her eyes; I remained silent, not knowing what she meant. “Why is there still washroom discrimination?”

I have to admit I hadn’t thought that was even a problem. I just go into the one with the little man sign; there is usually a woman sign right beside it, so it’s not like we have more of them. And if there’s no sign, no indication of sexual preference, I assume it doesn’t matter. End of story. “Is…” -my tongue floundered about, looking for the right question- “Is that usually a problem?” I couldn’t think of anything else to ask.

Her arms folded even more tightly across her chest. “Not usually!” she snorted, eyes locked on mine as if we were wrestling. For once I was glad my desk was so wide. “But there’s no need for two types of washrooms.” I watched her as passively as I could manage, given the tight hold she had on my face. “But washrooms are only the part of the iceberg that’s showing. Society discriminates: it assigns roles; Language discriminates -you know: chairman, fisherman, fireman

 “I thought we’d changed those,” I said, feeling suddenly compelled to defend Society, or something. “You know: it’s Chair, and Flight Attendant… That sort of thing…”

“Yeah, but inside, you’re thinking chairman, or stewardess aren’t you?”

I shrugged. “Maybe I am, but that’s because those were the words I grew up with; younger people probably don’t even know we used to call female flight attendants stewardesses.” I decided to cross my own arms to make the point. “And besides, language evolves alongside Societal trends -Societal demands, if you will. It means a shift is occurring, however slowly, don’t you think?”

Her face softened and a twinkle appeared in her otherwise steady gaze. She had, after all, come to me with another problem for which she sought help and guidance. Perhaps coming to a male for her gynaecological issue meant that she saw me as gender neutral after all. “Would you mind if I asked you a rather personal question, doctor?”

I shook my head -affably, I hope- but with a sinking feeling in my chest; I could feel it coming.

“Would you go to a female doctor for your prostate?” I suspect I blushed, because she suddenly smiled and visibly relaxed in her seat. “It’s a very slow shift…”

Screening Systems

Science, or at least the scientific method, can disappoint can’t it? We are informed -assured- that something is correct, the right thing to believe, and then with the passage of time and the arrival of new data must suddenly disavow that ‘Truth’ and start all over again. The comforting feeling that we have at last apprehended the underlying essence of something is torn away, leaving us with yet another useless fragment: a wide tie in a narrow-tie world… And the change, not fully understood, is apt to leave us bewildered and suspicious that nobody really understood it in the first place -not even those in charge. We are short-term creatures and our lives are brief; certainty is a luxury we long to indulge. A longer view of things is usually difficult and often opaque so a whole generation will espouse one thing, but the next another.

Medicine is not exempt. We spent a lot of time educating people -and governments- that a yearly health check-up was a good investment of time and resources: it would diagnose conditions at an earlier stage when treatment would likely be more successful and less expensive. It would save lives, save dollars; it was, and is, intuitively appealing. After all, a car needs periodic oil changes and during the process the mechanic might notice a tire that is abnormally worn, or a pipe that is almost rusted through; why would we be any different?

It’s a good question, and one with which I have struggled as well. And yet studies have suggested that although the occasional asymptomatic condition may be detected for which treatment, or at least counselling with follow-up would be indicated -things like hypertension, diabetes, cervical cell abnormalities detected by Pap smears or breast lumps with mammography come to mind- the inevitability of falsely positive tests often lead to far more extensive -and expensive- investigations that go nowhere. The yearly checkup, in other words, is being repudiated, despite its visceral appeal.

I remember when I was an intern and a new process was introduced that allowed multiple tests to be performed on a single sample of blood. One ordered, say, a hemoglobin to investigate a patient suspected of having anemia but as well as getting the hemoglobin, several other parameters were also reported. Statistically, there was a good chance that one of them would be abnormal -not necessarily the one being investigated, but merely a random error produced perhaps by medicine the patient was taking or food she had eaten, maybe even the time of month or hormone status. But it couldn’t be ignored, so further investigations would be undertaken -usually unnecessarily. The hospital continued to use the systemic multiple analysis on the blood tests, but soon realized that it made more sense to report only the entity requested. False positives can be a problem.

People become accustomed to certain screening systems, too; the programs become self-evidently appropriate, and any change to them is resisted as being either mean-spirited, or short-sighted. Prostate Specific Antigen testing, Mammography, and even Pap smear screening have all come under scrutiny of late. False positives, and even false negatives have been implicated as problems associated with undo reliance on them.

Take Pap smears, for example. Recommendations have varied over the years and jurisdictions, but the idea was that since cervical cancer was once so prevalent and deadly, it made sense to try to detect abnormal cells as soon as possible in a woman’s life. Suspicions that it was somehow associated with sex lead to the suggestion that Pap smears be started soon after she was sexually active -often within three years. Then how often? Well the recommendation in my center -assuming the first Pap was normal- was to repeat them once a year for three years and then every two years thereafter if they stayed normal. It seemed an entirely appropriate and reasonable approach at the time, so the public was educated accordingly. It became a widely accepted and normative routine and embedded itself within the public psyche: a woman needed regular Pap smears, and to wait too long between tests courted disaster. Hard to argue against that.

Until, of course, it was realized that certain subtypes of the Human Papilloma Virus (HPV) were responsible for cervical cancers and that young people often seemed to be able to mount an immune response to them without the need for treatment. So it became apparent that Pap smear testing too early in a woman’s life might lead to unnecessary interventions and the possibility of complications, not to mention the ever-attendant anxiety. Therefore the recommendations were amended (in some centers anyway): Pap smear screening might best be commenced at 21 years of age, and not shortly after sexual activity began. Many women did not feel comfortable with this approach, either for their daughters, or themselves, for that matter. More frequent was better, even if it led to further investigations such as microscopic examination and biopsies of the cervix (Colposcopy) that might prove negative. We need handles to grasp, doors that open; we need something we can trust. And they had been assured they could trust a regular regime of Pap smears. After all, it had certainly reduced the incidence of cervical cancer in the population. Once again hard to argue.

And now, yet again, it changes. If HPV is required to cause cervical cells to become abnormal, and the usual time for this to occur can be measured in years after the infection, wouldn’t it make sense to lengthen the interval for screening to take this into account -every five years, say? Maybe co-test with a Pap smear at the same time to make sure that abnormal cells hadn’t been brewing there for a while and then apply an algorithm to account for discrepant results? Or perhaps give the nervous public a choice: Pap smears every three years, or HPV and Pap every five? But because transient HPV infections are statistically more likely to occur in younger women (immune differences or amount of sexual activity, possibly?) don’t offer HPV testing to women under 30 because that might lead to unnecessary investigations… Confusing? Scientifically justified, but emotionally difficult to swallow?

I raise these issues because, well, my patients do. It’s not a little thing to change a habit, especially one inculcated by the profession and then rescinded or at least amended after widespread acceptance –generational acceptance. It requires not a little humility to reveal that we have not yet arrived. But, Wisely and slow, they stumble who run fast: Shakespeare again seemed to understand. But, do we?

Baby Boxes

Baby Box. The term itself is innocuous enough -cute, even- but the controversy it has engendered is far from benign. The concept is a simple one: instead of abandoning an unwanted baby, it is possible to leave it safely and anonymously in an incubator, often associated with a hospital, and usually inconspicuously accessible via a little door outside. At my hospital, when that outside door opens an alarm rings at the nurses desk, but it is delayed for 3o seconds or so, to allow the mother to leave and remain anonymous. The UN Committee on the Rights of the Child is asking for them to be banned, at least in Europe (where they are legal in many countries and available in many others), ostensibly because they violate children’s rights to identify their parents.

A German pastor, Gabriele Stangl, seems to have come up with the idea of the box in 1999 in response to the killing of a baby by the distraught mother. I find it hard to argue against the concept of such a refuge but because of the UN concern, perhaps it merits further analysis.

The argument that a child has the right to know its parent is a reasonable one, and yet it assumes that the child in question survives to ask the question. One implication therefore is that the problem lies not so much with the Baby Boxes, as with the need to abandon the baby in the first place. Unplanned pregnancies with the attendant need for contraception, health care programs available for all and social policies that care for people unable to survive otherwise… These, rather than the embarrassing Box that exposes the issues for all to see, are the real problems, so I suspect that the thrust of their argument rests on the need for psychologic, social and medical support for the community in general -and the mother in particular. But these services must not only be available but also accessible to all who require them -in other words, in a culturally and socioeconomically acceptable format that will not threaten those so marginalized that they have dropped out of other well-intentioned public and community programs. Sensitive, in other words, to their needs, however disparate from the norm.

And this is a tough sell to people who have learned not to trust the System with all its bureaucratic and legal constraints. They have realized there is usually a price to pay, whether in pride or criticism of a way of life they had not intended. The prejudice runs deep and subtle and often unnoticed by everyone except the people it purports to help. Having a program in place is one thing; making it effective and useful is another. Canada prides itself on its public health care system, its inclusivity, it’s universality, and yet there are many women who do not avail themselves of it except in dire emergencies, if then. It is not so much the availability of a service, in other words, but more its acceptability, and until we find a way to make it more sensitive to the needs of a population which lives on the edges of an otherwise oblivious society, there will be tragedies.

A wiser government -a wiser UN- would recognize the dissonance and, for the time being at least, prepare for those who, through no assignable fault of their own, do not choose the room it has prepared. The Baby Box is just another room, just another choice. There is no coercion in this, no implied change of policy abrogating the responsibility of a society to care for its less fortunate or less motivated members; it does not mean condoning the abandonment of unwanted babies. It does suggest a pragmatic approach, however: one that recognizes there will always be those who either do not want to be under the umbrella, or maybe cannot even find it. I remember a poem by Emily Dickinson: The soul selects her own society, then shuts the door; on her divine majority obtrude no more. It is a plea for the right of all of us -any of us- to have a choice. And it is a plea for the rest to recognize that there is a choice.

It’s not the choices we must work to change, but the reasons we make them.