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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The Myth of Medicine

The concept of the myth has always intrigued me. Not, as it is historically characterized – the fabulous stories of gods and heroes- or the more populist idea of an untruth or counterfactual, but rather as a metaphor. Myth as a way of explaining something that is difficult to put into words, that defies rational explanation: the meaning behind the meaning. Like those Russian nesting dolls, they are multilayered, with understanding hiding within significance which is in turn hiding under context hiding behind appearance… A myth is the meaning of a flower. It is a poem.

And yet it need not be so abstract, so elusive. All of us have myths: they are our stories –who we are, or at least how we have come to understand ourselves. As the famous Swiss psychiatrist Carl Jung said in his autobiography: Thus it is that I have now undertaken, in my eighty-third year, to tell my personal myth. I suppose the challenge, however, is to disentangle the reality from the fantasy… Or does it really matter? And are they both merely different colours of the same myth? Joseph Campbell, the author of many books about mythology, said: “…the only way you can describe a human being truly, is by describing his imperfections. The perfect human being is uninteresing… Aren’t children lovable because they’re falling down all the time and have little bodies with heads too big?”

We are, for all intents, our mistakes. Our foibles. Our myths. And that which we appear to be, we are not –or at least that may not be how we see ourselves. So, for the doctor, which is the more important –because to treat the person, we have to find them first?

I am reminded of a patient I saw  long ago when I was a freshly washed gynaecologist just setting up my practice in an era of militant feminism. Ms Debrashen –that was her title, she insisted, just like mine was ‘doctor’- was a frail-looking eighty year old but dressed in jeans and a sweat shirt that had I’m Talking to You written in Gothic script on the front. I suppose I should have been intimidated, but her smile was so disarming, I couldn’t help but return it as I greeted her in the waiting room. She extended a bony hand to shake before I could even free my own from her chart, and would have led me  down the hallway to my office if I hadn’t stepped in front of her to make sure she went through the correct door.

“So what can I do for you Mrs. Debrashen?” I said, still smiling, as she plonked herself down on a chair beside my desk.

Ms Debrashen,” she corrected me, but not unkindly. “I want you to do a pap smear. I haven’t had one in years, and my family doctor refuses to do one on me.” As she said this, she replaced her smile with a flinty stare that brooked no nonsense. I will be obeyed, it said for a moment, and then relaxed into a more Canadian, please. “I don’t know what got into him; I’ve gone to him for years, but he just climbed up onto his doctor horse and said I was too old.” She sighed theatrically and shrugged angrily. “Too old? Too old to be screened for cancer..?” She shook her head in disbelief. “Does he think I’ve lived long enough already?”

I took a carefully disguised deep breath and let it out slowly. Quietly. I decided to start with a thorough history in case there were some extenuating circumstances. Most cancer agencies throughout the world, and certainly the one in my own province here in British Columbia, have said that there is no indication for continuing to do pap smear screening after the age of sixty-nine. Only if there were recent abnormalities in the pap or as a followup to recent treatment for abnormal cells would it be justified. And of course, then it wouldn’t be screening, per se, but followup.

I took what I felt was a complete history and then, as a tactical decision, asked about her pap smear history at the very end. But no, all of her past pap smears were normal, she insisted.

She sat back in her chair, folded her arms across her chest and stared at me with a rather smug but expectant expression on her barely-wrinkled face.

“The Cancer Agency in British Columbia usually recommends not doing any more pap smears after you turn seventy,” I said, rounding it off for simplicity.

A curiously satisfied smile captured her face –as if she were laying a trap for me, but had to be careful not to give it away. “And why is that, doctor?”

“Well…” I started, not totally comfortable explaining to a woman of her age about the increasing belief in those early years of virology, that the abnormalities of the cells of the cervix registered by the pap smears were in fact the result of some sexually transmitted agent.

Her smile turned into a chuckle when she noticed my obvious embarrassment. “We are not always as we appear,” she said, the merriment evident on her face. “We write our own myths, then wear them, you know… Doctors no less than their patients.” I suppose I must have looked puzzled, because she sat back in her chair as if she were settling in to tell me a story. “Both you and I are Matryoshka dolls, and we only unveil the deeper ones when and if it serves our purposes.” She softened the severity of her latest array of smiles. “You are only looking at one of the dolls –the one you expect to see.”

I smiled the tolerant doctor-patient smile, and started to say something, but she waived it away with a flick of her hand.

“You didn’t ask me much about my sexual history, did you?” I think I blushed and she immediately seized upon it. “Too embarrassing, right? And yet had I been twenty or so, you would have jumped on it immediately when I told you I wanted a pap smear.” I didn’t have to answer –she had me. “But despite my age, and my failing eyesight, I can still read…” She pretended to look out of the window behind my desk to ease my discomfort, but I could tell she was actually watching me out of the corner of her eyes. “The current thinking is that abnormal pap smears are the result of sexual transmission, I understand. Like a disease.” She risked at direct glance at my face and when she could see the astonishment on it, she left her eyes resting there. “So, how would you get a new sexual disease, I wonder?” She let her words dangle for a moment to tease me. “I suspect there are only two mechanisms –either my partner is dallying in another realm, or I myself have strayed into a new kingdom.”

I tried to keep my mouth from falling open -I loved her words.

“But suppose I knew all this, but was unwilling, or afraid to share that aspect of my story with you because it didn’t conform to what I have always wanted to believe about who I am? And what you wanted to believe…” She stared at me for a while with innocent cow-eyes. “Or, on your side of the curtain, suppose you didn’t want to risk offending me because it would be like talking back to your grandmother. Belittling her. Disrespecting her…” She straightened herself in the chair as if she were about to get up. “So you see we are both trapped in our stories.” A huge smile spread from ear to ear as she rose to her feet. “But we’re only trapped as long as we don’t recognize them as surfaces. Clothes…”

She pointed at the examining room. “Let’s do the pap smear, now. I’m going to be late for my friends,” she said, and then started for the door, as I still sat immobilized in my chair.

“I was a Social Anthropologist in my previous life,” she said, looking back over her shoulder and winking. “Just thought you’d like to meet one of my deeper dolls…”

 *

I’ve never forgotten Ms Debrashen over the years. She taught me to question assumptions. Interrogate them. But it made me wonder just how much I can know about anybody. Some of those deeper layers are inaccessable even to the person from whom I’m trying to obtain a history. So overlayered with hope and retrospectively altered memories, some are forever hidden in the myths they have become. Perhaps for clearly displayed symptoms and signs, my medicine can work. I can treat a prolapsed uterus, or an elevated blood pressure, but in a way, that is almost like mending a sweater, or washing a shirt. It is hard to see the skin they hide beneath. And I am at a disadvantage peering through the murky water in which they stand to find something they’ve dropped or hidden. …

She made me appreciate the words of Hamlet when he repudiates his mother for insinuating he is pretending grief merely to get attention:

Seems, madam? nay, it is, I know not “seems.” ‘Tis not alone my inky cloak, good mother, Nor customary suits of solemn black, Nor windy suspiration of forc’d breath, No, nor the fruitful river in the eye, Nor the dejected havior of the visage, Together with all forms, moods, shapes of grief, That can denote me truly. These indeed seem, For they are actions that a man might play; But I have that within which passes show, These but the trappings and the suits of woe.