When the Medical Story Doesn't Have a Happily Ever After

[Broomstick]

One of my pet peeves is the story of heroic medicine that leaves the reader/viewer feeling all warm and fuzzy that everything and everyone is now "normal" and "well" when, in fact, there are serious long-term consequences.

One such story that crops up again and again is the separation of conjoined twins. Of course, it's not always successful, but every few years we seem to see a story of joined twins separated "successfully" with everything being wonderful afterward. When the connection is minor this can, indeed, be the case but for more intimately joined twins the results are often handicaps. This is one reason why adult pairs of conjoined twins can be adamant about NOT being separated - they are aware, as the general public is not, that separation can result in loss as well as gain and frequently do not find their joined state intolerable.

A Fairy-Tale Ending Eludes Separated Twins describes the after effects of a separation surgery. At the time of that surgery the results were hailed as a success and it was claimed the boys, who were joined at the head, including a small portion of brain, suffered no neurological deficits. That is now obviously not the case.

It also details something that is symptomatic of some charities that sponsor medical treatment for poor children. It appears relatively easy to get funding and support for big, dramatic treatments such as surgery but much less for long-term support and care. For people coming from abroad for such treatment to picture is even more complicated - if INS decides to deport this mother and her children it will probably mean disaster and even death for these boys.

What is the point of doing these heroic surgeries and saving lives if the proper support to make those lives decent isn't there?

[Cairber]

This reminds me a bit of a set of septuplets that was born maybe in the late 90s? They were all over TV and I remember all the donations they got-- new house even. ANd everyone talked about it being a miracle, yet, I remember reading an article about the family two years or so after they were born: two of the kids couldn't sit up, two had celebral palsy, some were still on feeding tubes, and there were respiratory problems and the like.

[DarthShady]

People forget,life goes on,it's a cruel world!

Such cases are common in my country(people collecting money to send their sick children to have surgery in western countries),but once the surgery is successfully done, everyone forgets them and people simply don't care anymore.

[brianeyci]

Libertarians where the fuck is your vaunted charity now eh?

You think charity, which depends on emotions, inconsistent funding and guilt will be sufficient to replace a planned and systemic investment in citizens?

Read that libertarians, eat your heart out. By the way, the kind of people who do charity are not generally fucknuggets who hoard every little thing they have and say, no, nobody's taking my crap. So if everybody was a libertarian the world would be fucked up the ass, the rich laughing their way to the bank and the poor stupidly assuming "liberty" translation tyranny (hey they fling the word around like water why can't I?) was crucial to the nation's survival.

Come out you cowards, if you dare. If not, let us hope your hypocracy remains forever, using the system while bashing it, because if and when the system breaks down the only good part would be you finally realizing how fucking stupid valuing trinkets over life is.

[Knife]

Pfft, doesn't even have to be dramatic nor heroic. Go take a stroll through a nursing home and see the poor people who are more or less warehoused there. Sure, for the most part, they get top of the line medical treatment, but it's hardly a life worth being excited for.

[Lusankya]

Long-term support is boring, and not very glamorous. Besides, everyone knows that disease is a thing that you beat up in glorious battles, like Nazis, and terrorists, and Communism. If it's not better after you beat it up the first time, then clearly you didn't beat it up well enough, and it's possible that you're lacking in patriotism. And if you complain that you needed government support for long-term care, then you're not only a traitor, but you're also a Communist, and deserve what you get, because you're trying to saddle the American people with an inferior socialised healthcare system.

[Broomstick]

Although politics and societal systems do factor into these cases, I don't think it's just politics at work here.

I think those that touched on the idea of heroically slaying the beast of illness/deformity may have the right of it. It's much more satisfying to solve a problem once and for all than to deal with something long term. Those who wind up less than perfect may be seen as a criticism of the medical industry, a living sign that doctors are not all powerful or infallible, even if the patients themselves are grateful for the improvements in their condition.

There is also the problem that, prior to the 20th Century, most of these heroic medical cases would have died. A woman having seven children in a single pregnancy is not in the overall design given to humans by evolution and in the past virtually all such pregnancies would have ended in miscarriage, and if not, then in death for the children at or soon after birth, which would have eliminated the problem of chronic, long-term care.

Which is not to say the effort, at least in some cases, should not be made. A person can have a long and meaningful life as an independent entity even if accident of birth leaves them blind, or suffering from cerebral palsy. The problems resulting from these conditions vary enormously - some "micropremies" do well over the long term, some separated conjoined twins likewise do well. We should not dismiss these cases out of hand, even in instances where the outcome can not be predicted.

One aspect of this problem is that, while such advanced medical technology is available in country like the US, either through charitable donations or through teaching/research hospitals or combination of both, long-term chronic care is NOT funded and continuation of charity often relies on the charisma of the parent(s), which can also be dependent on how compatible they are with US mainstream culture. In some instances, these children are permanently separated from their birth parents and wind up as foster children or adopted by parents in the US. Arguably, this is in the best interests of the children in the context of the present world situation, but is it really the best way to deal with these problems?

In other countries, such as the UK and in other countries in Western Europe, at least for citizens long-term care is funded. But how much access do foreigners in need have to the advanced medicine of these highly developed nations? In the US, private citizens tend to give more to charitable causes than in other nations (possibly because we know the government is not going to help and thus we have a history of relying on charity from the neighbors in hard times), but what of other nations? There are extremely competent medical centers in India, Singapore, and Hong Kong that have medical technology the equal of any other in the world, but who pays for these children in such desperate need? Teaching/research centers will sometimes take on extremely rare or complex cases as part of their "mission" to teach and advance knowledge, but at the end of the day money to pay costs has to come from somewhere. Even if doctors volunteer their skills (as does happen in some of these cases) there are all the other costs - a hospital bed, nursing staff, pharmacy services, rehabilitation...

I don't offer a set answer, because I don't think there is one. It's a long-standing dilemma on the cutting edge of medicine. I think that there will always be these questions on the frontiers of medical knowledge. Still, if you wish to keep advancing our abilities in this area the question of when intervention is a good idea and when it isn't, and how all this will be paid for, and how to deal with long-term consequences will need to be answered over and over again.

[Gil Hamilton]

Ironically, the comedodrama show Scrubs, while not entirely serious a show, can and does have people dying in it, and tragically, because the people working in the hospital are doctors, not superheroes, and have to deal with that.

One of J.D.'s voiceovers was something to the effect of "If you discount the maternity ward, which is mostly pregnant women, and the emergency room, which is mostly broken bones and stitches, one out of three people admitted to this place will die here." at the beginning of the episode, which is about doctors getting personally attached to their patients.

The last voiceover in it is "They say that one out of three people admitted here will die here, but some days the odds are worse than that. On days like that, all you can hope for is that you took something from it. Anything at all" As all three patients introduced in the episode end up dying (though no fault of the doctors, I recall one of them had renal failure and refused dialysis and another had acute lymphoma).

It was a very effective episode.

[Mayabird]

I'd been wondering what happened to all those multiple births. I thought it was idiotic how everyone was going, "Oh what a miracle!" when it was a combination of science and sketchy practices (these people usually went to less-reputable IVF clinics that would try to implant several embryos at the same time to get better chances for success. Sometimes all the embryos implanted).

Many of them had also been told to selectively abort a few of the fetuses to give the rest a better chance to survive, since otherwise they would all be born premature and possibly quite sickly from having to share nutrients meant for one or maybe two fetuses with seven or more. But no, of course not. That would be as much against god as their pregnancy in the first place. People gave the doctors evil looks for suggesting it, and then they leave all the sickly kids to languish.