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I’ve been thinking a lot about Harlequin Horizons, and wondering why some people don’t seem to understand the thorny ethical issues it raises. Then it occurred to me a medical metaphor might further the discussion. Specifically, since so many of us equate producing a manuscript to giving birth to a child, why not use one about pregnancy?
So imagine if you will, that we live in a time where infertility is rife. Even if a woman manages to get pregnant, genetic abnormalities have made miscarriages commonplace. With best practices – a good diet, regular exercise and avoiding toxic substances – the odds of delivering a healthy newborn are still less than one percent.
Now let’s put you in the body of one woman – legs spread apart, steel speculum in your vagina as Dr. Harlequin examines your uterus. You’ve come to him because he’s the man who delivers more than half the healthy babies in your town. He’s reputed to know when a pregnancy is viable, too, so you hold your breath as you await the verdict. And your world tilts at the too-calm, too-professional expression on his face.
“I’m sorry, Ms. Author,” he says. His smile is both weary and kind as he removes his gloves with a snap and helps you to an upright position. “This baby isn’t strong enough to make it.” Then he’s gone with a flap of his lab coat while you sit dazed, clad in a paper gown, KY jelly oozing from your nether parts.
You’re stunned for a while, but eventually dress with numbed fingers. Should you rouse yourself enough to tell the nurse you have questions for Dr. Harlequin, she’ll only cast you a sympathetic glance and tell you he’s too busy. He’s taking care of the healthy pregnancies and can’t spare any more time for you.
But do not despair. See, Dr. Harlequin left you a parting gift. No matter if this is your first pregnancy or your eighth, whether you’ve lived your life by your ovulatory cycle for twenty years or two, as your tears spill onto your cheeks and you step out into street, you clutch a pamphlet in your hand.
It’s a brochure for a Dr. Horizon and she offers you hope. See, this doctor promises a baby in your arms, one hundred percent guaranteed. You just have to fork over $600. (Or more, if you want Dr. Horizon to write your birth announcement, provide you with an epidural, and attend more than the first three hours of your confinement and delivery.) The only catch you can see on first read-through is that your delivery will take place in a lesser-known hospital.
But that should be okay, right? After all, Dr. Harlequin wouldn’t have handed you this brochure unless he approved of the facility.
So you rally. You buy yourself a tea and think it over. You can have your baby after all, a bundle in your arms to finally quiet the naysayers – your partner, who believed you’d wasted a good chunk of your life trying for something futile; your mother, who said you didn’t have it in you to be a parent anyway; your sister, who has only to breathe to radiate a cheerful, hateful fecundity. You sip your beverage and smile as you read more about nurseries filled at a price.
Now if you are a canny reader, and not completely overcome with emotion, you’ll find something else buried in the picturesque images: the subtle statement that your baby might be stillborn, or will almost certainly face lifelong disability.
But maybe that’s okay with you. Maybe you’ll accept the risk. Maybe you’re the kind of parent whose arms and heart have ached with emptiness for years. Holding a baby – any baby – will prove solace enough. And don’t all babies deserve to be loved anyway?
And maybe, as the brochure suggests, you’ll wreak a miracle. After all, who knows? If you are diligent, resourceful, take care of yourself, and especially if you pay more for medical care, your baby has a slim chance of being healthy. Very slim, but it would be a lie to say otherwise.
After all, remember the woman in Toledo five years ago? The one whose picture is on Dr. Horizon’s wall? She managed to deliver a baby girl – the one they now call a budding Mozart. Hadn’t she too been written off by the conventional medical establishment?
What’s more, Dr. Harlequin keeps in touch with all the babies born through Dr. Horizon’s hospital. Should your baby prove himself bright and capable, should your baby be born with captivating blue eyes, an infectious laugh, or another physical attribute that earns him attention from others, Dr. Harlequin will be informed. He will swoop in and give your baby the Dr. Harlequin seal of approval, as if he’d cared for your pregnancy all along. Then the doors to society will open. Your baby will obtain access to the best schools, the parties with all the cool and smart kids. He’ll even be eligible for prizes…
What you are not told, unless you specifically ask or research, is likelihood of this ideal scenario. Go the Dr. Horizon route, and your baby faces a 99.99% chance of being stigmatized for life. Even if he’s “normal”, by virtue of having been delivered by Dr. Horizon, rather than Dr. Harlequin, he will face an uphill battle. You’re going to have to be a strong advocate for him. To get him into a good school that will develop his potential, you’re going to have to fight for him tooth and nail. To have him actually invited to another child’s birthday party, you’ll have to have the kind of luck that wins lotteries.
In the end, to look after this one baby, you’ll probably spend enough time, energy and money to have gotten pregnant three times over.
Further, the terms of your parenting differ from what would have happened under Dr. Harlequin. See, while you’re on the hook for all childrearing expenses – both before and after birth – Dr. Horizon retains partial custody of your baby. Oh, she’ll let you take your baby home as often as you want. Weekends? No problem? Access for school plays? Sure. You’ll just have to pay Dr. Horizon a little cash each time. After all, she should have some compensation for the trouble of rearranging her schedule to accommodate you.
Now, I’d personally defend a woman’s right to choose this path. Maybe there is one mother in a thousand who would choose this route regardless of all the risks entailed. But keep in mind all this information has to be sussed out the hard way.
If you are lucky – if you are educated, savvy, allied with a parenting organization, married to a health care professional who understands the data and not the dream – you will come to this decision forewarned. You will have entered your path to parenthood armed with information.
But many will not be so fortunate. They’ll have entered into an emotional, uninformed choice. Because let’s face it: One only has to look at Dr. Horizon’s brochure to know it speaks to the heart about possibilities, and not the intellect about probabilities.
Further, neither Dr. Horizon nor Dr. Harlequin have mentioned yet another option to you: the lesser-known Dr. Lulu and associates, who work just down the street.
Under the Lulu aegis, a parent would still give birth to a baby who had to fight the odds. True, they’d have to shoulder a lot more responsibility, from picking out the delivery nurse and baby tutors, down to miniscule decisions like whether their baby would lie on sheepskin or cotton at birth. And they’d still have to pay for delivery expenses up front. But they’d pay at a much lower rate. And in the end, they’d retain sole custody.
So now you tell me. In this scenario, is it acceptable that Dr. Harlequin pass out brochures without informing his patients that Dr. Horizon is his sister-in-law? And that he wasn’t only getting a larger slice of turkey at Thanksgiving for his trouble, but some financial remuneration? Further, if we came to understand that Dr. Harlequin took a financial risk if he declared a pregnancy viable, yet a guaranteed profit if he steered a pregnancy to Dr. Horizon, could we continue to trust his impartiality about a pregnancy’s chances? Would it be acceptable that Dr. Harlequin withhold mention of Dr. Hulu’s service?
Hopefully not. In the real world, in the medical arena, we no longer settle for these kind of ethical contortions. Nor should we. Quite frankly, the cost to the public at both a personal and societal level is too high. So we have moved to a model where transparency is paramount.
If an investigator has financial ties that might influence his/her interpretation of raw data, we expect that to be disclosed to the public and medical journal publishers. Should the conflict be significant enough, we’d expect a good medical journal to deny publication and decry the “results”. With the Vioxx debacle in very recent memory, I doubt there are many people who don’t understand the need for high ethical standards, informed consent, and transparency.
Now, thus far I’ve set up our cautionary tale to make Dr. Harlequin sound more than a little devious. But let’s give this story even more shades of grey. Let’s assume that Dr. Harlequin really, truly loves babies and their mothers; that he’s devoted his life’s work to bringing healthy babies into the world. His moral compass is fixed. We know we can trust him. (We’ll worry about his successor later.)
But Dr. Harlequin is only human. See, he’s been putting in a lot of hours lately and he’s tired. And maybe it’s okay with him that he risks his own financial security with every delivery he does, but this has always been a bit of a sore point with his wife. She doesn’t nag him, exactly. But he knows she’d be a little happier if he erred on the side of caution and let a few more risky pregnancies go to Dr. Horizon. If he did Dr. Harlequin might even make it home for a supper or two.
Also, Dr. Harlequin’s getting emotionally drained. It’s damn hard work to tell a mother she’s got a healthy baby, then have to lay a stillborn in her arms. He’s never given anything less than his all to his work, but he really could use one month of entirely happy news.
Are you still convinced that Dr. Harlequin’s good opinion is unswayable?
Well I wouldn’t be. Even if common sense won’t say he’ll err on the side of extreme caution – only sticking with women who have proven their fertility or the ones in early labour – the real medical world would.
For instance, we know that even when a physician is offered no financial incentive to prescribe one drug over another, it takes next to nothing to alter her prescribing practice. What price, you ask? Pfft. A pizza lunch hosted by one drug rep; $25 off a medical conference fee; a ballpoint pen with the more expensive drug’s name. (known as de minimus gifts) These small things are enough for her to pick the more expensive drug over the cheaper, despite no appreciable medical benefit. This is true, people. Uncontrovertable. It happens at statistically significant levels even when a doctor will swear to you their opinion cannot be bought.
It’s why ethical hospitals have denied access by pharmaceutical reps to their residents and interns for years. It’s why pharmaceutical companies continue to fight for access to physicians in any venue they can reach them. It’s why, when thwarted by ethical guidelines, they’ll do direct-to-consumer advertising, hoping you’ll wear your physician down for them.
One final step in our metaphor: In response to Dr. Horizon’s association with Dr. Harlequin, a patient advocacy group has now become vocal. (Let’s call them the Women’s Reproductive Rights Association.) Yeah, it’s true they haven’t always been perfectly consistent in their outrage when it comes to dealing with physicians’ ethics breaches in the past. Yes, they might still be a little olde skool, and have pissed off more than a few pregnant women by their refusal to endorse midwives. But what are you going to do now? Right now? I want to know.
Are you going to deride them for their past decisions, or applaud their efforts to untangle a thorny ethical mess? Are you going to tell them they’ve been unreasonable and antagonist when they say they no longer endorse Dr. Harlequin under his present terms of practice? Or are you going to applaud their stance on this one initiative, then get to work on the consistency and midwifery issues in private?
Look, I don’t pretend to know all the answers to the reproductive crisis at hand. I’m no ethicist. But I’m smart enough to know the Dr. Harlequin/Dr. Horizon relationship, as it is, doesn’t help any, even if Dr. Horizon changes her last name. And at the moment, the WRRA speaks more closely to my values in reproductive health care than Dr. Harlequin does.
What’s more, I dearly hope he comes to his senses and begins to act like that the physician I’ve always admired. See, it’s not just the anxious pregnant mothers already out there that concern me. I’ll admit it; I’m selfish. I’m kinda hoping to be pregnant myself one day soon. And when I’m ready to try, I really don’t want to have to choose between crossing a WRRA picket line and delivering in a ditch.
I want a clean hospital room. I want drugs. I want a delivery room free of tension. But most of all, I want a competent person who knows how to pull a watermelon-sized babe from my hoo-haw. Please.