The legal right to medical decision-making

Hi, readers!  Long time, no blogging.

In the few years, there has been a huge push to legalise assisted suicide. Brittany Maynard became a national figure for the right to assisted suicide before she took her life.  Several states have legalised it.  Proponents of assisted suicide have argued that dying individuals, not the State, have a right to determine their medical care, and that swift death can be a compassionate alternative to prolonged, hopeless suffering.  (For the record, I do not find these arguments to be persuasive.)

Given that Americans are embracing this logic, it’s ironic that the same logic does not apply to the F.D.A.’s approval and clinical trial process for experimental, potentially life-saving, drugs.  The New York Times (hat tip) reported that the FDA is streamlining the process after its oncology chief, Dr. Richard Pazdur, lost his wife to ovarian cancer.

The F.D.A. has a notoriously slow approval process for new drugs.  This is largely a result of the thalidomide crisis in the 1960s, when pregnant women who took an anti-nausea drug gave birth to children with severe deformities (including flippers instead of arms).   F.D.A. medical officer Dr. Frances Kelsey refused to approve the drug after he found that it had not been tested on pregnant animals.  As the drug was never approved in the United States, American babies avoided the devastating harm that other children faced in countries where thalidomide had been approved.  The F.D.A.’s cautiousness in approving the drug has been used to justify its slow approval process in the half-century since the crisis.

Much of the problem with thalidomide was that its costs were out of proportion with its benefits: it reduced nausea, but could cause lifelong severe deformities.  As a general rule, we are more willing to approve drugs that cause a lot of harm if they also do a lot of good (e.g. a drug that has chemotherapy’s side effects would never be approved to reduce headaches, but is fine when it could save someone’s life). As such, the F.D.A. has a “compassionate use” programme, wherein severely ill people can apply to take unapproved drugs in the hope of saving their lives.  The rationale is that the patient will probably die anyway, so the additional risk of taking the unproven drug is minimal.  As the NYT explains,

That decision was made in a separate category of “compassionate use” drug approvals for individual patients. Every year, the F.D.A. receives about 1,000 similar applications from terminally ill people seeking experimental medications, and agency officials say they approve 99 percent of them. The approvals are distinct from those for drugs that have gone through clinical trials and that are for broad distribution.

So every year, about a thousand people apply for “compassionate use” drugs.  Every year, over a half-million people die from cancer.  Obviously, many of those people pass away from types of cancer that are not the target of any drugs in clinical trials or the approval process; but whatever that percentage of cancer patients who could benefit from a drug in the pipeline is, it is probably higher than 0.5%.  In fact, the number of people who apply for and receive permission for “compassionate use” of an experimental drug is approximately equal to the number of people who undergo euthanasia every year in America (even though assisted suicide is limited to a small number of states).

In effect, we are a country wherein a cancer patient is just as likely to commit suicide via a lethal dose of legal drugs as he is to receive experimental, potentially life-saving medical treatment.  Analytically, the laws governing each are different: the “drug cocktail” that is used for assisted suicide is an off-label use and therefore not governed by the F.D.A., and state law, not federal law, governs assisted suicide.  But in a discussion about the policy that governs the approval process for potentially life-saving medication and the availability of compassionate use, it is damning that Americans are just as likely to use legal drugs to kill themselves as they are to apply for life-saving ones.

 

‘Our Bodies, Ourselves’ Group May Close

The Cambridge, MA based Our Bodies, Ourselves organisation is at risk of closing. They cite “onsumers’ shift to the Internet, dwindling grants, and the lack of a long-term financial plan” as the reasons for the potential closure. (Article.)

When Our Bodies, Ourselves was published, public schools didn’t have the comprehensive health classes they do today; the stories many women tell indicate that their biology classes didn’t even cover human reproductive biology; and the topics it discussed (abortion, birth control, etc.) were taboo.  Of course grants were readily available and many people purchased the book.

Almost fifty years later, support for abortion is on the decline; innumerable forms of birth control are available over the counter; hundreds of millions of dollars in federal funding are given to providing women with birth control; and practically every school in America teaches the basics of human reproductive biology (even if they do not teach ‘comprehensive’ sex ed).  The White House was lit up with rainbow lights when the Supreme Court mandated same-sex marriage.   It’s hard enough to see how Our Bodies, Ourselves is anything but redundant, let alone why people or the government would prop up a small bureaucracy around it.

If the goal was to change the conversation and the culture, OBS won. The downside of ‘winning,’ however, is that they became irrelevant. In fact, much of the screeching about “infringing on women’s rights” (by, for example, suggesting that women are capable of purchasing their own condoms if they don’t want to be pregnant) has nothing to do with the actual policy, so much as justifying the existence of these grant- and donation-supported groups.  The subtext is that this group is only viable so long as it is controversial, ground-breaking, and has something to rebel against.

RentAWomb: a bit more morally complex than RentATruck

In the Daily Mail UK, Jessica Szalacinski discusses her experiences as a surrogate mother.  She enjoyed bearing children for gay couples who could not do so, but loathed the discussions she had with a very rich, very famous couple who wanted a hot egg donor, picked the sex of the child, and ordered her to have an abortion if more than one embryo was successfully implanted in her womb. (Story here.)

The sensationalism of the rich-and-famous eugenicists aside, even ‘ideal’ surrogacy arrangements are morally problematic.  Of Ms Szalacinski’s pregnancy and delivery, the Daily Mail writes, “In the delivery room, the baby was whisked away as quickly as possible, before any ‘biological urge’ could present itself.”

Maybe I’m some backwater dolt, but here’s my rule of thumb for when a newfangled medical procedure is ethical and when it crosses the line: if you are treating a mother’s love for the child she carried in her womb as a problem, you have gone seriously astray in life. This love is integral to the survival of the human race and is also a cornerstone of what makes us human, yet any surrogacy arrangement demands that this love, this desire to treasure and protect a newborn baby, be treated as a ‘biological urge’ that is best ignored and suppressed.

Just what we need: the fat police!

In April of 2010, Jonathan Gruber, one of the architects of ObamaCare and an adviser to the Obama Administration, suggested that we tax people based on their weight. (Full essay here.) The theory is that fat people spend more in health care dollars, so we can tax to “modify behavior and raise revenue.”

If people who smoke, drink, don’t work out, or are professional bungee jumpers have higher health care costs than everyone else, then I have no problem with a private insurance company raising their rates.  We do this for auto and homeowner’s insurance all the time: you pay more if you speed, drive drunk, or live in a place that gets hit by hurricanes.  A private insurance company that charges people too much for various “sins” will lose those customers; an insurance company that charges too little will lose money.  The force of the free market will push companies to get the most accurate risk assessment possible, and those companies would be just as happy with people quitting smoking and paying less as they would with smokers paying a penalty to cover their additional costs.

None of this is true about government sin taxes.  Aside from the creepy and coercive nature of the government attempting to regulate our lives through financial penalties, extorted from us with the threat of jail if we do not comply, the government will tend to rely on increased ‘sin’ revenue.  The money from cigarettes or adipose that pays for schools will no longer be there if people quit smoking or slim down. The government also has an incentive to increase this tax to the point just before political backlash: there is no downward pressure from competing governments that are ready to charge an amount that is more tailored to the expenses incurred from such weight.

Economics of sin taxes and insurance premiums aside, this is also problematic because weight is not what causes people to incur excess health care costs: it is fat, lack of physical fitness, high blood pressure, low muscle mass, and a host of other things.  Most likely, the government will simply calculate our BMIs and tax us, rather than attempt the fine-tuned calculation of taxing people whose body composition puts them at a higher risk for health problems.  It also highlights one of the many problems with socialised medicine: once you are forced to pay for some stranger’s health care, you have every right and incentive to stick your  nose in that stranger’s business and dictate how his life ought to be run. It’s an ugly business, served up to us in the name of compassion.

The relentless march of the eugenics movement

On CNN.com, radiologist Dr. Grazie Christie writes about new parents who are contemplating suing her for ‘wrongful birth,’ i.e. a physician’s failure to diagnose a problem, which, if the expecting parents had known about, would have lead them to choose abortion. The defect in question is a cleft lip.

I have written about wrongful birth actions before and think that, legally, they ought to be prohibited.  Basic humanity suggests that we not allow someone to sue people over life rather than harm or death. Dr. Christie’s testimony shows us that there is no logical endpoint to such actions: it is not merely about a child who should have been diagnosed with Tay-Sachs or other such death sentences, but is really about any child that is not perfect. A cleft lip is one of the most common birth defects in America and is repairable with a simple surgery.

This goes beyond euthanasia, which acknowledges that a human being is dying (or never being conceived); it is the objectively incorrect idea that a pre-human, a not-person, is being returned and swapped out for another, more perfect, less cleft-lipped, person.  Once we’ve ceded the ground on abortion in the cases of Down Syndrome, spina bifida, and the like, the rationale used to justify those procedures is used to justify abortion in the case of an easily-fixable cosmetic defect.

Cruel to be Kind

An eight-month psychological experiment revealed that people who are “nice” and conscientious are more likely to engage in cruel behaviour on the orders of an authority figure; the more nasty types are more likely to stand up for themselves and others.  (Link.)

The theory is that people who are slightly contrarian are more likely to defy authority, while “nice” people are more concerned about people-pleasing – or at least pleasing the person whose wrath they are most likely to incur.  (I wouldn’t call it “people pleasing” to administer electric shocks to other human beings.)  Sometimes, we simply do not have the option of being kind to everyone around us, particularly when one person is trying to hurt another person.  Our choice is about who we will offend or hurt, not whether or not we can escape it.

Ebola: the Baobabs of Infectious Diseases

In Le Petit Prince, the Prince describes to the pilot why he diligently removed baobabs from his tiny planet:

“That is strictly correct,” I said. “But why do you want the sheep to eat the little baobabs?”

He answered me at once, “Oh, come, come!”, as if he were speaking of something that was self-evident. And I was obliged to make a great mental effort to solve this problem, without any assistance.

Indeed, as I learned, there were on the planet where the little prince lived–as on all planets–good plants and bad plants. In consequence, there were good seeds from good plants, and bad seeds from bad plants. But seeds are invisible. They sleep deep in the heart of the earth’s darkness, until some one among them is seized with the desire to awaken. Then this little seed will stretch itself and begin–timidly at first–to push a charming little sprig inoffensively upward toward the sun. If it is only a sprout of radish or the sprig of a rose-bush, one would let it grow wherever it might wish. But when it is a bad plant, one must destroy it as soon as possible, the very first instant that one recognizes it.

Now there were some terrible seeds on the planet that was the home of the little prince; and these were the seeds of the baobab. The soil of that planet was infested with them. A baobab is something you will never, never be able to get rid of if you attend to it too late. It spreads over the entire planet. It bores clear through it with its roots. And if the planet is too small, and the baobabs are too many, they split it in pieces . . .

Before this year, an Ebola outbreak would stay within the confines of a village or community, killing no more than a few hundred people at a time.  In the current outbreak, more than ten thousand people have been infected and approximately five thousand of those people have died, which is more than the previous thirty-plus years of casualties combined.

If there were ever a baobab that ought not take root, it is the current strain of Ebola.  It seems innocuous now, as the sarcasm and jokes fly about only one person in America dying of it, but we can stop it when only one person has died on American soil.  Once taken root (see the analogy?), Ebola will be almost impossible to quarantine and manage; at best, it will fly through the population until we can find a vaccine, and at worst, it will result in draconian quarantine measures for all citizens.  The push for travel restriction and quarantines isn’t xenophobic; it’s good sense.

The Dark Side of #MenForChoice

The #menforchoice hashtag is trending on twitter to the great delight of feminists everywhere – and the non-delight of us more cynical types.

If a man finds out that he got his girlfriend pregnant, there are three outcomes: she aborts, and then he’s done with the problem; she raises the kid and either demands that he marry her or garnishes 20% of his paycheck for eighteen years; or she gives the kid up for adoption.  One of those choices creates a lot of problems for men, making it harder for them to find a different woman (if they are not sure they want to marry this one) and costing them quite a bit of money.  That men would then wrap themselves in the mantle of “choice” and piously declare their full support for an abortion does not make them good, compassionate people.

“Hon, I know we weren’t expecting this, but we’ll move in together, get married if you want, and I’ll be the best father I can be every single day of my life” is a much bigger and tougher promise than “I’ll pay for half the abortion and drive you to the clinic.”  Any woman who wants to know if a man really supports her choice and not just what is easy for him ought to ask him if he’ll make the first promise to her – and follow through on it.  Anything else is a prettied-up, self-serving escape hatch for lousy men.

Science and Religion, not Science v. Religion

Jonathan Adler refutes the idea that Hobby Lobby is basing its opposition to four forms of birth control on “bad science.” (Hat tip.) Prof. Adler’s thesis is that religion isn’t rational, so we shouldn’t expect religious opposition to fit within scientific parameters, and the idea that life begins at conception (not implantation or some other point) is a religious idea.

With all due respect to the professor, I think he gets it wrong, at least as applied to this particular set of facts.  There is no doubt within the scientific community that life begins at conception, and it is within the realm of science to define “life” and to learn where that life starts. What science cannot tell us is the value of that human life, or whether its life is just as valuable at conception as at age thirty. Ethics, including religion, inform our understanding of the value of human life at its earliest stages, and that – the worth of a tiny human being – is the fundamental issue in the Hobby Lobby case.

Consider that science tells us that you, dear reader, need oxygen to survive.  What science cannot determine is whether you have a natural or a legal right to oxygen, if those who deprive you of oxygen should be deterred by force from doing so or punished if they succeed, or if it is worthwhile to provide you with oxygen. Those are matters about which science is ill-suited to address, but fall squarely within the realm of ethics, religion, and morality.  This is, of course, analogous to the issue that the Green and Hahn families have with providing Plan B and IUDs to their employees.

I will also point out that the opponents of Hobby Lobby’s religion play semantics and then complain that the other side doesn’t live up to the resulting foolishness.  The Green family opposes some forms of birth control that work by ending a preexisting human life.  They are unconcerned as to whether that methodology is to remove a baby that is attached to the uterine wall or to prevent it from attaching in the first place: either way, that is the deliberate ending of a human life. Prof. Adler inadvertently gets into this trap when he mentions that scientific authority defines “pregnancy” as commencing with implantation, as if the Greens give a damn about pregnancy, per se. Prof. Adler’s statement is akin to saying that the Greens should have no problem paying for people to strangle infants shortly after they exit the birth canal, for that is not “ending a pregnancy” or “an abortion.” That twists the pro-life ethic, as the Greens disapprove of anything that deliberately ends a human life, abortion- or pregnancy- related or not.

The dust bunnies under my bed don’t have human rights, either

The Blogfather’s response to the question of whether or not chimps have human rights is pithy and accurate (“No. Next Question?“), but pithy has never been my strong suit.

No, chimps do not have human rights because they are not members of the human race.  Even the tiniest human, mere moments after its conception, is a member of the race that built civilisation, harnessed electricity, runs a court system, creates art, and builds skyscrapers.  Whether or not that particular human being will end up building skyscrapers or being cared for in a home for invalids is beside the point: we all have equal worth and dignity.

No chimpanzee will ever be part of the human race, nor will it ever (at least in our lifetimes) create a civilisation like ours.  It will not develop a body of governing law, implement a court system, manage roads and bridges, erect a skyscraper, study science, or paint the Mona Lisa. To be a bit sarcastic: if chimpanzees want “human rights,” then they should seek said rights through their own court system, with their own advocates, and using their own laws. That a chimpanzee lacks redress within its own system is an indication that it is not entitled to such rights.

It is absurd to grant human rights to non-humans (especially when human beings are so frequently denied their own rights, like the right to life until one is safely born); the correct set of rights is animal rights.  Chimpanzees may be given the rights that we afford a house pet: the right to food, care, and non-abuse if in our control and custody, but they are not entitled to the full panoply of human rights.