What is the Merit of Originality?

‘I am not young enough to know everything,’ as Oscar Wilde once said, and maybe the rest of us aren’t either. It is often an unquestioned assumption that New trumps Old, that innovation usually leads to improvement, and that by standing on the shoulders of giants, the view is necessarily better. Clearer.

But there is wisdom in both the long as well as the panoramic views. Neither changing  your shoes nor altering your hat, really improves the safety of a voyage -nor does it address the original goal of a safe arrival of everybody on board. Appearing modern, seeming prepared, only helps if it helps –a leak is still a leak, especially if there are only lifeboats for a few…

Let me explain. I happened upon an article in the journal Nature that chronicled the introduction of a new, and highly accurate method of diagnosing TB through genetic analysis.  https://www.nature.com/news/improved-diagnostics-fail-to-halt-the-rise-of-tuberculosis-1.23000?WT ‘The World Health Organization (WHO), promptly endorsed the test, called GeneXpert, and promoted its roll-out around the globe to replace a microscope-based test that missed half of all cases.’ It sounded like a perfect technological fix for a disease that has so far avoided effective control. ‘Some 10.4 million people were infected with TB last year, according to a WHO report published on 30 October [2016?]. More than half of the cases occurred in China, India, Indonesia, Pakistan and the Philippines. The infection, which causes coughing, weight loss and chest pain, often goes undiagnosed for months or years, spurring transmission.’

Unfortunately, ‘[…] the high hopes have since crashed as rates of tuberculosis rates have not fallen dramatically, and nations are now looking to address the problems that cause so many TB cases to be missed and the difficulties in treating those who are diagnosed. […] The tale is a familiar one in global health care: a solution that seems extraordinarily promising in the lab or clinical trials falters when deployed in the struggling health-care systems of developing and middle-income countries. “What GeneXpert has taught us in TB is that inserting one new tool into a system that isn’t working overall is not going to by itself be a game changer. We need more investment in health systems,” says Erica Lessem, deputy executive director at the Treatment Action Group, an activist organization in New York City.’

But I mean, just think about it for a minute. ‘The machines cost $17,000 each and require constant electricity and air-conditioning — infrastructure that is not widely available in the TB clinics of countries with a high incidence of the disease, requiring the machines to be placed in central facilities.’ Sure, various groups agreed to subsidize the tests in 2012, but: ‘each cost $16.86 (the price fell to $9.98), compared with a few dollars for a microscope TB test.’ So which test would you choose if you were a government strapped for cash to provide for healthcare for a broad spectrum of other equally pressing needs?

‘Even countries that fully embraced GeneXpert are not seeing the returns they had hoped for. After a countrywide roll-out begun in 2011, the test is available for all suspected TB cases in South Africa. But a randomized clinical trial conducted in 2015 during the roll-out found that people diagnosed using GeneXpert were just as likely to die from TB as those diagnosed at labs still using the microscope test.’ That seems counterintuitive to say the least.

So what might be happening? ‘Churchyard [a physician specializing in TB at the Aurum Institute in Johannesburg, South Africa] suspects that doctors have been giving people with TB-like symptoms drugs, even if their microscope test was negative or missing, and that this helps to explain why his team found no benefit from implementing the GeneXpert test. Others have speculated that, by being involved in a clinical trial, patients in both arms of the trial received better care than they would otherwise have done, obfuscating any differences between the groups.’

‘Even with accurate tests, cases are still being missed. Results from the GeneXpert tests take just as long to deliver as microscope tests, and many people never return to the clinic to get their results and drugs; those who begin antibiotics often do not complete the regimen.’ Clearly, technology alone, without an adequate infrastructure to support it –without a properly funded and administered health care system- is not sufficient.

And it’s simply not enough to have even a well-funded health system that benefits just those who can afford it, leaving the rest of the population to fend for itself, and only seeking help when they can no longer cope –often when it is too late. Health care is a right, not a privilege –no matter what those in power would have us believe.

I’m certainly not arguing that improving technology is not part of the solution, but sometimes I wonder if it is merely putting new clothes on a beggar. Handing out flowers in a slum.

Let’s face it, real Health Care is more than a sign on a door, more than a few people in white coats. It is a kind of national empathy. A recognition that even the poorest among us, have something valuable to contribute; that even those who have strayed from society’s chosen path, are who any of us might be, but in different clothes.

The myth of Baucis and Philemon tugs at my memory: They were an old married couple living in a small village in Anatolia (part of Asian Turkey nowadays) who, unlike everyone else in the town, welcomed two peasants at their door who were seeking refuge for the night. The couple, of course, were unaware that they were actually welcoming two gods, Zeus and Hermes, disguised as humans. A common enough trope, perhaps, but an instructive one, I think -one that transcends virtually all cultures, and borders: the idea of helping others without any expectation of reward. It is not an exchange -a transaction- so much as an action. Agape, in fact.

Health care is like that. Or should be… It’s not about the glittering display in the shop window –there to impress the passersby- it’s about the people in the shop.

 

 

 

 

 

 

 

 

 

 

 

 

 

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For my Pains, a World of Sighs

What does pain look like? An intriguing question to be sure, but one I hadn’t even thought to ask until recently. Pain is one of those things that, like St. Augustine’s quandary over Time, presents a similar difficulty in defining. The International Association for the Study of Pain made a stab at it: ‘Pain is an unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage,’ but somehow, it seems to lack the immediacy of its subject matter –it stands, like an observer, outside the issue. Poets have done a better job, I think. Emily Dickinson, for example: After great pain, a formal feeling comes. The Nerves sit ceremonious, like tombs’; or Kahlil Gibran: ‘pain is the bitter potion by which the physician within you heals your sick self’; or even Oscar Wilde: ‘Pain, unlike Pleasure, wears no mask.

But I was reminded of another of Wilde’s observations -‘We who live in prison, and in whose lives there is no event but sorrow, have to measure time by throbs of pain, and the record of bitter moments.’- when I read a CBC article from November, 2016 entitled ‘Indigenous children, stoic about their pain, are drawn out with art’ http://www.cbc.ca/news/health/aboriginal-youth-art-pain-hurt-healing-1.3852646

‘”Aboriginal children feel and experience pain just like anyone else. It’s just that they express their pain very differently,” said John Sylliboy, community research co-ordinator with the Aboriginal Children’s Hurt and Healing Initiative.

‘”They don’t necessarily verbalize their pain, or they don’t express it outwardly through crying or through pain grimaces,” he told CBC News.’

‘These children are socialized to be stoic about their pain, to hold in their pain.’- Margot Latimer, Centre for Pediatric Pain Research, IWK Health Centre in Halifax. ‘”We noticed we weren’t seeing any First Nations youth referred to our pain clinic at the IWK hospital and wondered why that was so.”‘ It didn’t make sense, she thought — especially since research shows that chronic illness in First Nations communities is almost three times higher than in the general population. Aboriginal children are especially vulnerable, says Latimer, with higher rates of dental pain, ear infections, and juvenile rheumatoid arthritis.’

I found it very moving, and yet disturbing, that ‘[…] cultural traditions, and lingering effects from the residential school system, are some of the reasons Indigenous kids pull on their suit of armour against pain and hurt.’ But they’re children, and perhaps not yet completely shackled to all the subtleties of culture. ‘A group of Indigenous children and teenagers from four First Nations communities in the Maritimes were asked to paint their pain, to express their hurt through art. Researchers were hoping to tease out emotions from a population more inclined to show resilience to pain.’ But soon after, the children began to depict not just physical pain, but emotional pain as well. As Sylliboy points out, ‘”These kids told us about loneliness, sadness, darkness, bullying, hopelessness. It’s not the typical anxiety [or] depression. It is more complex than that.” “To these clinicians who are just asking about physical pain and not looking at emotional pain as well, it is important, because Aboriginal kids are showing us that there is no difference between emotional and physical pain”, said Sylliboy. “It’s just pain.”‘

And I learned another thing about pain –or maybe about children – ‘It’s all about creating a safe space for the children when they come to the hospital, says Latimer.  She says it’s about learning a bit about them and gaining their trust. “When they come to the health centre, or a physician or a nurse practitioner, they want to tell their story, but we do not train health professionals to assess pain that way.”’

It reminded me of a patient I first met in the Emergency Department at the hospital when I was the gynaecologist on call one night. Edie, an aboriginal woman arrived with heavy bleeding –she was  apparently in the throes of miscarrying an early pregnancy- and had brought her eight year old son to the hospital because she had no one to take care of him at home. The bleeding settled shortly after her arrival and an ultrasound in the department revealed that there was no further tissue left in the uterus, so fortunately we didn’t have to take her to the operating room. But the process of diagnosis and decision was not instantaneous. Although the little boy, Timmy, was clearly frightened, his face stayed neutral. And yet it seemed as if he was peeking through hole in a fence, and I could see his eyes carefully following my every move. One of the nurses volunteered to sit with him in the waiting room while I examined his mother, but I was the last one he stared at before leaving; I was the thing he didn’t understand.

I decided to let Edie rest on the stretcher for a while before discharge, and I thought I’d reassure Timmy before I left. He was sitting on the too-big chair as quietly and unmoving as an adult and when I approached, he stared at me like a deer hiding in a forest.

“Your mom’s going to be okay, Timmy,” I said with a big smile.

But he still seemed just as frightened, and stayed silent for a moment. “There was blood on her pants,” he mumbled, perhaps making sure I’d noticed. He allowed his eyes to venture out further into the open and he examined me again. “And she was hurting…”

What do you tell a little boy about his mother’s suffering? I knelt down on one knee in front of him so our eyes were on the same level and put a hand on his knee. I couldn’t  think of anything else to do. “She’s not hurting now, Timmy,” I said and smiled again.

He looked at my hand and then he finally smiled. “Can she go home now?” When I nodded, he reached out and carefully touched one of my fingers, and then when I didn’t pull away, he patted my hand.

I never saw little Timmy again, but a few weeks later, Edie came to my office for a follow-up visit and to thank me for seeing her in the hospital in the middle of the night. “Timmy was really impressed,” she said and smiled. She ruffled through her purse and brought out a rumpled piece of paper she’d nonetheless folded carefully. “He drew this for you, doctor,” she said proudly, and handed it to me.

When I opened it up, it was a drawing of a hand in red crayon.

“He said it was to thank you…” She seemed embarrassed, and hesitated before continuing. “I asked him why he drew it in red…” she said.

She still seemed embarrassed, so I stayed silent until she felt ready to continue.

Edie studied me for a moment with her big brown eyes, still uncertain. Then her face relaxed and a big smile appeared. “He said maybe you were one of us, now…”

I could have cried.

Facing up to the Medicine

There is something magical about a face. It is at the same time familiar and yet mysterious. And although it contains many parts with disparate functions, these are somehow secondary. We see the face as a unit, then judge the components; it is a face first, and only subsequently an aggregation of details. It is the whole which imparts meaning, stirs emotion, engenders response. Only then do the ingredients surface. As St. Jerome said: ‘The face is the mirror of the mind, and [the] eyes without speaking confess the secrets of the heart.’ So I suppose it should come as no surprise that development of reliable facial recognition technology is considered so important. http://www.bbc.com/news/technology-33199275

But there are other domains in which it matters, too. Less technical perhaps, and yet more intriguing. Sometimes it’s not just the perpetuation of facial patterns enabling recognition from encounter to encounter that garner attention so much as a metamorphosis of something far more elusive, far more difficult: the ravages of age. There is something about a face that transcends Time itself. We are recognizably who we are despite the years: My comfort is that old age, that ill layer-up of beauty, can do no more spoil upon my face, as Shakespeare has King Henry V say.

Of course we all suspect we have escaped; daily visits to the mirror cannot see the change any more than frequent glances at a clock can spot the hour hand’s slow progress. Whatever we suppose Time to be, and however we conceive of its passage, barring the before and after of catastrophic events, its gait is not fixed, nor its effects on us often noted from day to day. We mostly live our lives in relative time, and adjust our expectations so gradually they are only apparent to others who happen upon us after long and unexpected intervals. And even then, unless confronted, go unspoken by and large -undescribed, unless in favorable terms.

*

The woman on the other side of my desk looked familiar -in the way some new patients seem to do; I could almost place her. Almost… I see a lot of people –some more frequently than others, to be sure- and yet after a few months or years of absence, even those with whom I’ve had extended exposure tend to generify. Recognition often requires initiation on their part. Prodding. Reminiscing… The encounter often ends with embarrassment or pretense on my part, disappointment on theirs, degenerating into an inadvertent charade for both of us. I don’t wish it so, but alas, I have not been blessed with an eidetic memory of faces past.

Of course, it’s easier to recall some people. They adopt a position on a chair that begs for remembrance, or a way of holding their head that is unique. With Sally -the name on my computer daysheet- it was her face. I tried to analyse what made it so memorable, as I sorted through some papers on my desk. Her eyes? They were brown and calm –they did not seem hunters at the moment, nor imprisoned behind long lashes; not deep set in shadows, not  hiding behind thick distorting lenses. In fact they were far from striking or even distinctive. Her nose was neither large nor mishapen, and her mouth seemed to sit comfortably in its alloted place and smiled only when appropriate, if infrequently.

She noticed me sneaking glances at her as I pretended to play with the keys on my computer, and sighed. “You’re trying to remember, aren’t you, doctor?”

Her voice, too, was familiar, and yet only vaguely so. She was like some book I’d read years ago, whose style and mood, were immediately recognizable, and yet the story, and the ending, were obscure. Tantalizingly close, but so far irretrievable.

“You haven’t changed at all from the first time I met you,” she said, painting my face with her eyes. “Hardly any grey in those curls, still no wrinkles, and that unmistakable look of innocent puzzlement whenever the focus is deflected back onto you.”

Why would anybody remember that? I smiled to diffuse my discomfort.

“Same smile, too,” she whispered, sitting back in her chair triumphant in her recollections. I was evidently who she expected to find -the one she had remembered. Her memory had served her well so far and her face was celebrating.

Who was this anyway?

She straightened up in her chair and sat forward slowly. Deliberately. “I know I’m just here for a pap smear, and you’re a busy man, doctor, but given our history, would you mind if I asked you a personal question?”

I hate it when somebody says that. A polite request usually demands a courteous acquiescence -especially when an unrecalled ‘history’ is offered as a reference.

I nodded, but tried to indicate by my expression that I was only doing it to be –what?- polite. My forehead, I’m sure, made my point.

She noticed, and a tiny smile escaped, ran across her lips, and disappeared on the other side. I could see her amending her question on the fly. “I’m sorry, I didn’t mean to embarrass you. It’s just that you look so much the same as I remember from that first time… It’s uncanny, really.” She leashed her eyes for a moment to study my reaction. I could feel them trying to peel information off my face as they sat, hooded and dangerous on the edge of her thoughts. “I’ve been trying to figure out what it is.”

“Probably the scrubs I always wear,” I said, trying to be funny I suppose.

She shook her head and tried out another smile. “No… I don’t think so.”

Something about the varying texture of her smiles and how they each pulled differently at her eyes, caught my attention and a memory –a shadow, really- flitted like a ghost just out of reach.

A new smile, thin and toothless –an unasked question smile- appeared like a figure glimpsed through a thick gauze curtain, only to disappear again before adequate identification. She was beginning to unnerve me. But suddenly, like opening a gate, everything rushed out.

She took a deep breath and straightened herself on the chair as if she were about to answer a question in class. “I… I asked to see you for a reason, doctor. The pap smear was just an excuse…” She looked past me to stare out the window for a moment, obviously uncomfortable. Embarrassed.

“My midwife sent me to you for an urgent consultation twenty-two years ago. It was my first pregnancy and I wanted so much for everything to go smoothly –you know, home delivery, no pain killers… Anyway, one day Maryanne told me I had to see a specialist. I wanted to see a female, but for some reason I ended up with you.” She glanced at me to see how I was reacting, and then, reassured, continued. “I remember you were very nice, but you said there was not enough fluid around the baby and that it wasn’t growing so you wanted to induce labour right away. You asked me if I had any questions, but I was only thirty-two weeks along in my pregnancy then so I panicked and ran out of the office. I phoned the midwife and she assured me you had a great reputation but I didn’t believe her. I couldn’t. I was sure you were a fake, so I drove back to Surrey where I used to live. I wanted to think it over. But that night I went into premature labour and they had to deliver Melissa there by Caesarian section.

“She was quite sick when she was born –she spent more than two weeks in their nursery,” she said, wringing her hands as if it had all happened yesterday. “And you know, for some reason I blamed you. Like, if you’d decided my midwife was wrong, everything would have been okay…” She sighed and wiped away a tear. “Weird, eh? Hormones, I guess, because then they had to hospitalize me for depression. I was so paranoid I couldn’t think straight for months…”

She took a deep breath and another, different, expression surfaced. “Have you read any Oscar Wilde, doctor?” She asked, her eyes suddenly cold.

I nodded –but carefully. I had the uncomfortable feeling I was being led into a trap. “The Portrait of Dorian Gray?” she asked, her voice now soft and apologetic.

I steeled myself. It was the story of a hedonistic and dissolute man who remains handsome and young while his portrait –stored in the attic- ages and reveals all the evil he has committed.

“At the time, I thought of you as Dorian Gray,” she said, now inspecting her hands tightly kneading her lap. “All show, pretending to be kind, but all the while not caring what I really wanted… Really needed.” She shook her head slowly –maybe she did that when I saw her that time so very long ago. I don’t remember. “I apparently phoned all my friends and told them to stay away from your office… I hated you when I was sick… I tried to spread rumors…”

Well, at least it was Dorian Gray and not Jekyll and Hyde she’d read… Small comfort, I suppose.

Suddenly she sat up and leaned across the desk to grasp my hand. “But it was my portrait that was up in the attic, wasn’t it? It was me all along that was the fake.

“You know I’ve waited all these years to tell you about it -to apologize… but I was afraid.”

I squeezed her hand as a tangible acceptance of her apology and sat back trying to think of something to say to diffuse the mood. “And Melissa? How’s she doing now?”

Yet another smile surfaced briefly, changed its mind for a moment, and then re-emerged as a gigantic grin. “You delivered her baby a couple of  years ago, doctor. I was sitting in the far corner of the delivery room in the shadows for most of it, afraid you’d recognize me. I remember you kept looking over at me –wondering why I wasn’t standing beside my daughter. I didn’t quite know what to do. I kept trying to smile, but I was so ashamed, the smile kept disappearing…” She looked at me quizzically for a moment. “Did you recognize me?” Her face knotted up. “I have to know…”

It was my turn to smile this time. “No…” I said slowly, unable to suppress a blush at my failing memory. I hope that made her feel a little better. And yet, although I hadn’t recognized her then, I realized what had puzzled me about her today: she was wearing the face of a woman I’d come to know quite well; she was her daughter but through a glass darklyThe time is out of joint- O cursed spite, that ever I was born to set it right!” said Hamlet. It felt like that…