Can women be trusted to make decisions about their own bodies?

In a previous post, I discussed the rising popularity of genital cosmetic surgery (Extreme Makeover: Vagina Edition). While the concept has been warmly embraced by women, it has elicited reactions ranging from distaste to outrage by others.

Everyone agrees that vaginal and vulvar cosmetic surgery has no medical benefit. Everyone agrees that views of genital attractiveness are strongly influenced by the prevailing culture. The point on which people disagree is whether women can be trusted to make decisions about their own bodies. Reactions range from paternalism and maternalism to acknowledging the possibility of autonomous decision making.

Paternalism is best exemplified by Daniel Sokol, writing in the British Medical Journal. According to Sokol:

The 16th century French author and physician Rabelais was obsessed with vaginas. In one of his stories an old lady drives the devil away by showing him her vagina. Today the devil might recommend she go to the nearest aesthetic surgeon for vaginal rejuvenation. A touch off the labia (labioplasty), a bit of tightening here (vaginoplasty), and voilà: a designer vagina…

Here is my paternalistic view: medical professionals, whether working in the private or public sector, should not succumb to these requests. Although it would be hard to argue that anyone seeking aesthetic genital surgery is unable to make an informed decision, it is plausible to argue that patients’ autonomy is often diminished by strong social or peer pressures.

Sokol at least is honest about his paternalism. Feminists who oppose genital cosmetic surgery seem to be entirely unaware of their maternalism. Their alarm shades into, dare I say it, hysteria. Bonnie Zylbergold asks whether genital “beautification” is plastic surgery or mutilation.

… Dr. [Lenore] Tiefer maintains that … all [genital cosmetic surgery] really produces is a generic model of women’s genitalia… So enraged is Dr. Tiefer, that in 2000 she founded The New View Campaign, an organization devoted to stopping all form of FGCS. The group compares FGCS to Female Genital Mutilation (FGM).

… [P]oints out Dr. [Virginia] Braun, “In both cases, what’s being done is that women’s genitalia are being altered to conform to a certain set of notions and expectations about what genitalia should look like, what they need to look like if they are to be appropriately feminine and appropriately desirable.”

Genital modification may be unnecessary, potential harmful, and the result of peer and marketing pressure, but it is not mutilation. And the claim that female genital mutilation represents a notion of genitalia “beauty” completely misrepresents the procedure. Genital mutilation is performed specifically to deprive women of sexual pleasure in an effort to ensure chastity. In other words, FGM is meant to prevent women from engaging in sexual intercourse, while vaginal cosmetic surgery is meant to enhance a woman’s opportunities for sexual intercourse.

The paternalists and maternalists agree on one fundamental point: women cannot be trusted to make decisions about their own bodies. Individual physicians must refuse to honor their wishes; regulatory agencies must make it impermissible for women to choose genital cosmetic surgery.

It is interesting to note that no one seems to think that men are incapable of making decisions about genital modification. Procedures to lengthen genitalia, prolong erection and otherwise enhance sexual “attractiveness” are equally if not more common among men, yet neither the paternalists nor the maternalists suggest that men must be restrained by their physicians or governmental regulations from making independent choices.

As distasteful as female genital cosmetic surgery may be to its critics, they are wrong to assume that women (and only women) should not be allowed to make these decisions. Rather, the principles that apply to all medical decisions should be invoked. Dr. Michael Goodman, writing in the journal Obstetrics and Gynecology explains:

Patients must be adequately screened, taking note of the ethical principles of autonomy, nonmaleficence, beneficence, justice, and veracity. Patients should be adequately protected and guided to develop reasonable expectations and understand that their genitalia are not abnormal. Surgeons should be adequately trained and experienced and should use universally accepted, accurate, and descriptive terminology. The procedures should be adequately described to patients, and risks and expected outcomes should be fully explained.

Genital cosmetic surgery, like all cosmetic surgery, has no medical benefits, substantial risk of harm and is often undertaken in response to cultural pressure. Nonetheless, informed consenting adults have a right to choose genital cosmetic surgery, just as they have the right to choose any cosmetic surgery.

I left clinical medicine for many reasons, but one of the most important is that caring for patients had become an endless slog of fighting administrators and other doctors. What did we fight about? Money, of course. Administrators did not want to spend it, and doctors did not want to risk doing work for which they might not be paid. I was afraid that one day, because I wasn’t up for a fight, one of my patients would be hurt. I had an experience shortly before I left practice that crystallized those fears.

A young woman who was 6 months pregnant called me one night when I was at the hospital. She had had pain in her leg for the past 2 days and the pain was getting worse. It wasn’t just that the pain was stronger; she had noticed that the pain appeared to be extending up her leg. First only the inside of her calf hurt, now the inside of her calf and her thigh hurt. I told her that she needed to come to the hospital because I was concerned that she might have a blood clot in her leg.

Blood clots in the leg (deep venous thrombosis or DVT) are potentially quite dangerous, and known to be more common in pregnancy. The danger of a DVT is that a piece of the clot in the leg can break off and travel to the lungs where it can cause death.

She arrived around midnight and I went to examine her. There are 5 classic signs of DVT and she had none of them. Her leg was not swollen, she had no tenderness over a major vein, the affected leg was not warmer, the skin over the vein was not discolored, and moving her foot in the prescribed way did not produce the pain typically associated with a DVT. Nonetheless, I had a bad feeling about this woman, and, over the years, I had learned to pay attention to bad feelings.

I explained to the patient that she had none of the signs of a DVT, but I was still worried. I wanted to get an ultrasound study of her leg to be absolutely certain that there was no blood clot. I apologized in advance, since it was unlikely that she had a blood clot, but blood clots are very dangerous and I wanted to be sure. The patient understood and agreed.

I called the radiologist on call and explained the story. I was very careful to point out that the patient had none of the classic signs of DVT, but I wanted the study anyway.

“No,” he said.

“Excuse me,” I replied. “I think I didn’t hear you correctly.”

“No,” he repeated. “I’m not going to scan her leg because she has none of the classic signs of a DVT.”

“Yes,” I said, somewhat exasperated. “I’m aware of that. I just told YOU that she has none of the classic signs, but I wanted to make sure.”

“Well, I’m not doing it because I won’t get paid.” He continued, “A scan in the middle of the night is an emergency and the insurance company will not pay for the scan unless it meets the criteria for an emergency scan. She must have some of those signs of a DVT or they won’t pay.”

We argued back and forth for a while, but he would not budge.

“Okay,” I said. “Just spell your name for me.”

He was puzzled. “Why do you need to know how my name is spelled?”

“Why? Because I am writing at the top of the very first page of the chart.” I cheerfully replied. “That way, when she walks out of the hospital and drops dead, they’ll know just whom they should sue.”

Silence.

“Well, if you’re going to be THAT way about it, I’ll scan her leg,” he said, “but I’m not going to do it right away.”

“Suit yourself,” I replied. “Just scan her leg before the morning.”

That exchange took place at 1 AM. I told the patient that we would have to wait for the scan, and I went to lie down.

At 5 AM my phone rang. The same radiologist was on the line, but now he sounded rather meek.

“Dr. Tuteur? Dr. Tuteur, I just wanted you to know that she has a blood clot in her leg extending from her ankle, up through her calf and thigh, right into her pelvis.”

Not only did she have a DVT, but she had the worst one either of us had ever seen. She almost certainly would have died from a pulmonary embolus if we had sent her home. Instead we immediately began treating her with blood thinners. She stayed in the hospital for two weeks, went home having learned to give herself shots of blood thinner, and ultimately did great. She delivered a healthy baby and had no further problem with blood clots.

Nonetheless, I was shaken up by the experience. She had only gotten the appropriate treatment because I had been willing to fight with the radiologist. In some ways, it had been a matter of luck. I wasn’t busy with other things; the radiologist had aggravated me, and was determined to prevail. I was uncomfortably aware that had circumstances been different, I might have failed to force the issue, and the patient would probably have died.

Why did the radiologist refuse to do the scan? He was simply responding to the incentives and punishments put in place by the insurance company. They didn’t want to pay for emergency scans so they made the requirements onerous. The insurance company was not wrong in assuming that patients without classic signs of DVT probably don’t have one, and they didn’t want to pay for needless scans. The radiologist was not wrong in assuming that this patient didn’t have a DVT and in assuming further that if he did the scan he would not be paid for it.

Almost everyone who has health insurance has fought with the insurer at some point because the insurance company has refused to pay. If you’ve done so know you just how frustrating that can be and how much time it takes. Doctors fight with insurance companies all the time, both to get approval for tests and procedures that patients need, and to get paid for visits, tests and procedures that have already occurred.

Most people don’t realize that doctors are often forced to fight with each other. The perverse incentives and punishments of the existing insurance system mean doctors who are trying to treat a patient must argue with other doctors who fear they will not be paid for their work. Sometimes, rather than fight to the bitter end, a doctor will give up and a patient won’t get a test or treatment that she needs. And sometimes, giving up could have fatal consequences.

I don’t do abortions.

I learned to do them, of course, as most gynecologists of my generation did, and I did them as part of my residency. That experience convinced me that abortions were not consistent with my view of providing patient care. I referred those of my patients who wanted abortions to other providers, and I never did another termination again.

Despite my personal views on abortion, I am horrified, appalled, and deeply outraged by the assassination of my colleague George Tiller. I am also profoundly humbled by his ultimate sacrifice. Tiller knew his life would probably end like this. He had already been shot, his clinic had been bombed, and he constantly received death threats. Yet none of that deterred him from standing for what he believed in.

It is a curious fact about conservative Republicans of this era, that they think the law applies to everyone but them. Abortion is legal, yet they try to interfere with it on a daily basis; legal access to abortion is the result of the political will, and is grounded in the American Constitution, yet conservative Republicans feel free to ignore the parts of the Constitution that don’t suit their prejudices; murder is the ultimate crime, yet they tacitly and actively encourage the murder of abortion providers. Many conservative Republicans feel that religion is so important that they attempt to defy the Constitutional separation of Church and State, yet they apparently have no problem violating the sanctity of a church to commit murder.

Terrorists always believe that the end justifies the means. Make no mistake about it; Operation Rescue and similar anti-abortion organizations are terrorist groups. They use the tactics of terror — harassment, threats, and violence — to impose their personal beliefs upon the rest of the country, which has explicitly rejected those beliefs. And while we’re being honest, let’s acknowledge that conservative Republican celebrities like Bill O’Reilly, tacitly encourage and support terrorism.

George Tiller was far braver than most of us could ever be. He believed that access to late term abortion is, in addition to a legal right, part of the reproductive freedom to which all women are entitled. He was willing to put his life on the line to defend that right, and he paid the ultimate price. He knowingly risked death to stand firm for his vision of healthcare. Who among us would be willing to risk so much for an abstract principle?

George Tiller was martyred by anti-abortionists, who, in addition to flouting the law, are foolish enough to believe that killing doctors will stop abortions. Of the million plus abortions performed in this country every year, almost all are first trimester or early second trimester abortions, and murdering Dr. Tiller will stop not a single one of those. Dr. Tiller was a specialist in late abortions, but there are other such specialists both here and in other countries. Anyone who had the means to get to Dr. Tiller has the means to get to the other providers.

What have the anti-abortion terrorists accomplished? They have revealed themselves as the terrorists they are. They have aroused the horror and support of Americans who might otherwise have little concern about abortion rights. They have strengthening the cause of abortion rights in this country. In other words, anti-abortion terrorists have accomplished absolutely nothing, except the senseless murder of a good man.

Good news, moms and dads! Your teenage daughters are using their budding entrepreneurial skills to become … prostitutes. That’s what Canadian film maker Sharlene Azam alleges in a new documentary and companion book called Oral Sex Is The New Goodnight Kiss.

According to the website:

…Attractive, white, high school girls – 13, 14 and 15 years old – are having sex with up to 7 men a night, several times a week, so they can go shopping. Other girls are selling their virginity for $1000. These are not street prostitutes. “They are the prettiest girls from the most successful families,” explains one expert…

The voices of the girls are cold enough to chill the hearts of the most jaded parent:

“Five minutes and I got $100,” one girl said. “If I’m going to sleep with them, anyway, because they’re good-looking, might as well get paid for it, right?”

“I’d begun having threesomes at a really young age. I did it for attention or because that guy has a connection to get you something that you want — drugs, clothes, whatever.”

Azam believes the phenomenon is new and places the blame squarely on the usual suspects.

The Internet:

Fifteen years ago, if a girl wanted to learn more about horses, she would go to the library and find pictures of horses in meadows. Today, if you type “horse” and “girl” in Google, the first hit is: “American girl licks hung horse dick”.

Celebrity Culture:

…Anyone who has ever stood in a supermarket checkout line knows that, in addition to conforming to an extremely narrow definition of beauty … today’s female pop icons are sex objects to be alternately exalted, ogled, emulated, critiqued, condemned, pitied, and recycled … ad nauseum…

With role models like these, immersed in a culture where sexuality is tied to celebrity status and money, girls are conditioned to feel empowered whenever they are the sexual center of attention.

Television:

Your daughter who may not yet have kissed a boy has probably seen a threesome, girl on girl kissing … and alcohol and drug use on Gossip Girl where there are no consequences and no interference…

But in reality, while the medium may be new, the message is as old as time. Women exist for the use and gratification of men, and have no worth of their own. These supposedly new sexual phenomena are the direct result of ancient beliefs: men are superior to women, women (their property and their bodies) are owned by men, the primary purpose of women is the sexual satisfaction of men.

These teenage Canadian prostitutes, for that is what they are, are the direct lineal descendants of royal mistresses, courtesans, and denizens of the “casting couch.” They sleep their way to what they want, because it is the easiest, quickest way to get what they want. Men are willing to pay for sex and the girls believe that they are exploiting that willingness.

These girls don’t realize that they are the ones being exploited. They sell themselves too cheaply, willing to trade their bodies for trinkets or a bit of discretionary income. This is not about sex, though sex is the medium of exchange. It’s about the dignity and worth of women.

Though they would no doubt balk at the comparison, these girls are no different than their sisters of 500 or 2,000 or 5,000 years ago. They are treated as, and believe themselves to be, nothing more than commodities. They accept that anything valuable in life can be gained only by pleasing men. They assume that women are not entitled to satisfaction during sex; that’s the province of men and women must be paid for their participation.

The solution to this problem is not keeping girls away from the Internet, TV and the celebrity culture. The solution is imbuing girls AND boys, women AND men, with the principle that women are independent moral beings, worthy of respect in their own right, and not objects of amusement for men. The solution is inculcating our daughters with the self confidence to achieve their desires through their own abilities, the self respect to scorn the advances of those who wish only to exploit them, and the sense of self worth that would prevent them from trading so much for so very little.

Fathers are now such a fixture in delivery rooms, it is easy to forget that this is only a recent development, extending back less than 40 years. It is difficult to fathom why they were excluded, since their presence is so valuable. They can help in a myriad of practical ways, sponging a forehead, spooning ice chips, holding a leg during pushing. However, their primary contribution comes in emotional support. They don’t call it labor for nothing, and encouragement and comfort are invaluable during the hours that labor lasts.

No one would want to go back to the days when fathers were excluded from the births of their children, but every now and then, the father poses challenges to the mother or the staff. Some fathers are not supportive, or worse, hectoring their partners or ignoring them altogether. Some fathers are drunk, or stoned, or carrying a weapon. Then there are the more delicate cases. When water became part of pain relief in labor, fathers wanted to get into the shower or the tub to offer support. That’s fine, as long as they wear a bathing suit, but not everyone remembers to put one on.

It is also possible for a father to be too helpful. That’s what happened to one of my midwife colleagues.

I was sitting at the nurses’ station filling out paperwork when the midwife came out from the room where she had just finished a delivery. Ordinarily that would not be notable, but her face was a shade of bright red, signaling profound embarrassment.

“What happened to you?” I asked.

“You’re not going to believe this,” she replied.

After a long, but uncomplicated labor, with several hours of pushing, her patient had given birth to a healthy baby boy. There had been no episiotomy. The midwife simply needed to deliver the placenta and then she could leave the couple to enjoy their new baby. The placenta took a while to detach, but the midwife was very patient, and waited for the gush of blood that heralded the detachment. After almost 20 minutes, the gush of blood came and the placenta followed shortly thereafter. Unfortunately, the blood kept gushing.

The midwife palpated her patient’s uterus. As she suspected, it was not contracting firmly, probably because of the protracted labor, a risk factor for hemorrhage. She massaged the uterus, and asked for pitocin to be placed in the patient’s IV. Then, wishing to employ natural methods as well, she explained to the patient that putting the baby to her breast would stimulate the release of oxytocin (natural pitocin) that would help stop the bleeding.

As the mother put the baby to her breast, the father cheerfully offered: “I’ll help, too!”

Before the midwife could explain that that wouldn’t be necessary, the father was suckling his wife’s other breast.

The midwife was mortified.

“It’s fine now,” she pointed out. “The bleeding stopped after the uterine massage and the pitocin. You don’t need to continue; nothing more is needed.”

“Don’t worry,” the husband replied. “It’s no bother. I do this all the time anyway.”

The midwife withdrew, to handle her paperwork and her embarrassment.

Lactivism, natural childbirth, attachment parenting. There’s a new moralism that defines motherhood to promote the personal preferences of a select group of women, wealthy, white women from first world countries. Mothering is now measured by a set of socially sanctioned “performances” at purported critical moments. Rebecca Kukla, a feminist scholar, has written a fascinating article in the International Journal of Feminist Approaches to Bioethics entitled Measuring Motherhood examining the middle class penchant of evaluating other women’s mothering by signal moments.

As a culture, we have a tendency to measure motherhood in terms of a set of signal moments that have become the focus of special social attention and anxiety; we interpret these as emblematic summations of women’s mothering abilities. Women’s performances during these moments can seem to exhaust the story of mothering, and mothers often internalize these measures and evaluate their own mothering in terms of them. “Good” mothers are those who pass a series of tests — they bond properly during their routine ultrasound screening, they do not let a sip of alcohol cross their lips during pregnancy, they give birth vaginally without pain medication, they do not offer their child an artificial nipple during the first six months, they feed their children maximally nutritious meals with every bite, and so on…

In other words, mothering has been reduced to a set of achievement tests that can be that can be passed or failed. Among those achievement tests are birth and breastfeeding.

… [W]e have elevated the symbolic importance of birth to the point where it appears to serve as a make-or-break test of a woman’s mothering abilities. If she manages her birth “successfully,” making proper, risk-adverse, self-sacrificing choices, and maintaining both proper deference to doctors and control over her own body, then she proves her maternal bona fides and initiates a lifetime of proper mothering. If, on the other hand, she fails at these tasks during labor, she reveals herself as selfish or undisciplined and risks deforming her baby’s character, health, and emotional well-being, while putting her bond with her child in permanent jeopardy.

Yet these claims have no basis in fact:

…[R]eal risks and their sizes do not seem to be of interest to the lay critics of mothers’ birth choices, who appear quite content with hand-waving references to gains and harms… [I]t is hard not to conclude that the main normative standards at play are ideological, not medical: Our cultural insistence that women make “proper” birth choices and maintain control over their birth narratives is not about minimizing real risks; rather, it supports our desire to measure mothering in terms of women’s personal choices and of self-discipline exercised during signal moments. What is at stake is not the health of babies but an image of proper motherhood, combined with the idea that birth should function as a symbolic spectacle of such motherhood.

Lactivists also make claims that have no basis in scientific fact:

North American breast-feeding promotional materials consistently emphasize exclusive breast-feeding, as opposed to the more productive message that the more breast milk babies receive, the better. “Does one bottle of formula make that much difference? We wish we could say that it doesn’t,” states La Leche League, rather disingenuously, in their breast-feeding guide, “but we can’t”. According to this guide, a single bottle of formula can trigger life-threatening allergies, and any contact with artificial nipples (bottles or pacifiers) can cause nipple confusion, wherein the baby is no longer willing or able to latch onto a breast… there is no evidence for nipple confusion resulting from the occasional use of artificial nipples. A 1992 study found no difference in breast-feeding outcomes between newborn infants who were exclusively breast-fed and those who received one bottle daily. The pervasive fear of instant nipple confusion among new mothers … is itself indicative of the power of the logic of the single corrupting moment.

It is hardly a coincidence that these claims reflect the personal preferences of a small group of Western, white women who are relatively well off.

Thus to the extent that we take “proper” maternal performance during these key moments as a measure of mothering as a whole, we will re-inscribe social privilege. We will read a deficient maternal character into the bodies and actions of underprivileged and socially marginalized women, whereas privileged women with socially normative home and work lives will tend to serve as our models of proper maternal character.

The bottom line is that a small group of privileged women hold their own choices choices regarding birth and infant feeding up as standards to which all women should aspire. This is wrong on several levels: there is no objective evidence that the claims of “natural” childbirth advocates and lactivists are true; there is no objective evidence that single moments of motherhood determine the long term well being of a child or determine the strength of the mother-child bond; and insisting that the cultural rituals of a privileged group of women are the standards to which all other women should aspire reinforces existing cultural and economic prejudices.

Vaccine rejectionists, when confronted with scientific evidence that does not support their claims, insist that their observations and beliefs are more reliable and more important than scientific evidence. They insist that their “intuition” about what happened when their children received vaccinations (they immediately developed autism, for example) is enough to “prove” that vaccines cause autism.

Vaccine rejectionists, like most believers in complementary and alternative medicine (CAM), place a great deal of emphasis on intuition. Partly, this is just magical thinking, the fervent belief that wishing can make it so. However, it also serves as an important justification for ignorance.

In Alternative medicine: A psychological perspective, Finnish scientists Marieke Saher and Marjaana Lindeman explore the reliance on intuition in “alternative” health. First the authors describe the difference in the two thinking styles:

… [I]ntuitive thinking is described as an unconscious, fast and effortless style of thinking, making use of such information sources as personal experiences, feelings, concrete images and narratives. Because the information processing is emotional as well as mostly unconscious, intuitive judgments are slow to change. … [R]ational thinking is characterised by conscious reasoning and mental effort, using all available objective information to come to a true answer, and willingness to adjust conclusions in the light of new facts.

The opposite of intuition is rational thinking. Vaccine rejectionists, like most advocates of “alternative” health, lack the knowledge base to think analytically about health and disease. They suffer from a fundamental lack of knowledge of science, the scientific method and statistics, not to mention a lack of basic knowledge of immunology and virology. Because they cannot participate in a meaningful way in rational scientific discussions, they self-servingly discount the value of rational thinking, and substitute intuition in its place. The “beauty” of intuition in healthcare is that it allows lay people to believe that they are “experts” in their own health and that they do not need doctors, or other rational thinkers, to advise them.

According to Saher and Lindemann:

… CAM messages favour familiar concepts (“naturalness”), similarity, personal experience and testimonials over abstract concepts like general principles and probabilities … Moreover, since CAM appeals to an intuitive thinking style, it may be especially attractive to people with a preference for this type of information processing.

… CAM beliefs and its use are not explained, predicted, or influenced by rational thinking and rational health information. Scientific information, which is central to the distinction between conventional and alternative medicine, involves numerical risk information and outcome statistics. Analysis of such material requires rational thinking … Although delivering rational health information will logically lead to an increase in rational health knowledge, it is likely to co-exist with intuitive knowledge rather than replace it. Actually, the ‘alternative’ status of CAM treatments alone is a rational message that they are not supported by science. Rationally spoken this can be interpreted as a warning, but for many CAM advocates it seems to come closer to an asset.

Reliance on intuition represents continuity with a pre-rational view of health and illness. Intuition is a more palatable name for the combination of ignorance, superstition and magical thinking that characterized healing among ancient and medieval peoples. The parallel can be extended further. In this model, “alternative” health practitioners are the modern day equivalent of shamans. Instead of offering rational prescriptions for health, they offer superstitions, affirmations, and support in rejecting rationality. Like shamans, they offer substances with no efficacy (herbs, homeopathy) and provide friendship and companionship as a substitute for knowledge.

The reliance on intuition is a central defect in vaccine rejectionism. It signals, it the clearest possible way, a rejection of rational thinking, knowledge and statistics. Ultimately, it is nothing more than a justification of ignorance.

One of my most prized possessions is a heavy jade bracelet that I’ve never worn. It is a beautiful piece, held together with an elaborate gold clasp. It is precious because it was willed to me … by one of my patients.

Mrs. H was an elegant, aristocratic woman in her 70’s who was slowly wasting away from colon cancer. I met her initially when I was an intern on the general surgery service. She had been admitted for yet another surgery to remove yet another metastasis from abdomen. The surgery did not go well. They could not remove the entire tumor. At that point, she was so weakened by her disease and the unsuccessful treatments of the prior years that she could no longer care for herself. She had no close family and no friends to help her. She was sent to a nursing home, a rather nice nursing home, but a nursing home nonetheless.

As an OB-GYN intern, I did what was known as a rotating internship, several months each in various parts of the hospital. Therefore, I was working on the medical service when Mrs. H was admitted a few months later because of intractable nausea and vomiting. She was assigned to me and I went to her room to examine her and complete the paperwork that always accompanied a hospital admission.

I was saddened by her appearance. She was rail thin and obviously in a great deal of discomfort from the nausea. I ordered anti-nausea medication and she began to feel better. I examined her and excused myself to attend to the paper work. To my surprise, she asked me to stay a bit longer. She needed to talk to me, she said.

I sat in the chair by her bed, and much to my surprise, she took my hand.

“I want to ask you for a favor,” she said. “It’s a very big favor, though, so I will understand if you say no.”

“I’m dying,” she continued. “I know I don’t have much time left, maybe a few weeks. Please don’t send me back to the nursing home.”

I started to protest. I was as low in the medical hierarchy as could possibly be. I didn’t have the authority. I couldn’t do it.

“Please,” she whispered. “I have no family or friends who can take care of me. The nurses on the oncology floor have become my family over the last few years. They are kind to me and they make sure I am not in pain. I want to die with them. Please, can you try to help me?”

Against my better judgment, I let myself be convinced. She also extracted a promise from me that I would do whatever I could to be sure that she did not die in pain. I warned her, though, that I did not have much power. I also warned her that we might need to use a bit of deception to escape the roving eye of the dreaded UR, Utilization Review. Utilization review sent nurses through the hospital each day to look for ways to save money. One of their most important functions was to identify patients who were running up costs and transfer them out of the hospital.

Thus began my daily campaign to avoid or circumvent Utilization Review. Fortunately, I was not alone, or I never could have accomplished it. Mrs. H had enlisted a senior surgery resident who had cared for her in the past. He was no longer directly involved in her care, but he gave me ideas for ways to deceive Utilization Review. I would end every working day with Mrs. H, planning our strategy. After I finished checking up on her, she would check up on me. How had my day been? Was I getting enough rest? How was my husband and my life outside the hospital?

Within two weeks I ran out of tests to order and results to track down. Utilization Review had caught on and they made arrangements to transfer Mrs. H back to the nursing home. The surgery resident had a suggestion. Mrs. H could no longer eat, because her intestines were blocked with tumor. She was dying of malnutrition. That’s not a bad way to die and there was really no reason to treat her malnutrition, since treatment would only prolong her life to no purpose. The resident suggested that I arrange for placement of an indwelling catheter in Mrs. H’s chest to provide for intravenous nourishment. That would certainly buy a few more days of hospital time and she was dwindling quite rapidly at that point.

Mrs H and I discussed it. She was enthusiastic even though I warned her that the placement would be painful, and that she really didn’t need the catheter at all. She insisted that she wanted it, if that’s what it took to prevent the impending transfer.

There was just one hurdle in the way. I had to ask permission from Mrs. H’s personal doctor, the one who was really in charge of her care. I sought him out and began my rehearsed explanation as to why Mrs. H should get an indwelling catheter to ward off malnutrition. He listened politely and then looked me in the eye.

“Don’t think I don’t know what you are doing,” he said.

I froze, and readied for the tongue lashing that I knew was coming.

“Don’t think you fooled me. I’ve known what you’ve been doing all along,” he said, not unkindly. “You’ve been trying to trick Utilization Review into letting Mrs. H stay in the hospital to be with the nurses when she dies.”

That was it. I was caught. But I was unprepared for what came next.

“I approve.” He smiled. “I’’ve known Mrs. H for 35 years. She was one of my first patients when I started my practice. She’s a good woman and she has no one to care for her. The nurses are like her family. We can’t make her better; the least we can grant her last wish.”

“I approve of the catheter,” he said. “And I approve of anything else you try to do to keep her here until the end.”

Mrs. H got her catheter. The insertion was uncomfortable, but once it was in, it didn’t seem to bother her. It also turned out to have an added benefit, besides allowing her to receive nutrition that she didn’t need. It was an excellent route for the ever greater quantities of morphine that she required in the last few days.

Everyone worked together at the end to be sure that Mrs. H was comfortable and supported by the nurses whom she loved. I was not there the night she died. I had gone home for the evening, but the surgery resident she was fond of was with her as she drew her last breath.

I was sad that she was gone, but elated that I had been able to fulfill my promise. Mrs. H had had the death that she wanted.

A few weeks later I was paged to the lobby of the hospital. I had never been paged to the lobby, and couldn’t imagine why I was needed there.

A young man was waiting for me. He introduced himself as Mrs. H’s great nephew. He handed me a jewelry box.

“We read my aunt’s will,” he said, “and she wanted you to have this. Thank you for taking care of her.”

The bracelet is heavy and elaborate. It is not my style of jewelry, so I haven’t worn it. But even after 25 years, I still keep it in the top drawer of my dresser and think of Mrs. H.

My first experience with denial in cancer care came with the very first patient I met as a medical student. It was the end of the second year of medical school and we were given our white coats and taken into the hospital to meet patients. I was assigned to an elderly woman with advanced lung cancer.

I had pored over the woman’s chart, so I was prepared for her poor condition. She sat upright in bed, struggling to breathe. Even though she was getting supplemental oxygen, her lips and fingernail beds were tinged blue. I cautiously made my way into the room and introduced myself.

“How are you feeling today?” I asked.

The woman brightened. “Oh, my arthritis isn’t so bad today. Thanks for asking.”

I spent almost an hour with this woman, discussing her hospitalization and medical history. Not once did she mention lung cancer. She acted as if she didn’t have lung cancer at all, and I was afraid to confront her directly. She was in denial.

In her case, denial was a useful coping strategy. She was not so mired in denial that she refused care for her cancer. Indeed, she had accepted state of the art cancer care complete with surgery immediately after the originally diagnosis, and chemotherapy along the way. But denial allowed her to put the frightening reality of end stage cancer out of her mind, and live the rest of her life in psychological comfort.

Sometimes, though, denial becomes a life threatening problem. It’s not hard to imagine why. Cancer patients face the paradigmatic case of being stuck between a rock and a hard place. They are told they have a disease that might kill them if they do nothing, and they must undergo brutal treatment in an effort to save their lives. The temptation always exists to pretend that they don’t have cancer, or that they don’t need arduous treatment to recover. Sometimes, the psychological pressure is so great that patients are tempted to run away from their cancer … literally.

That is what has happened in the tragic case of Daniel Hauser, a 13 year old boy with a highly curable cancer, whose mother has run off with him in an attempt to avoid the awful treatment. Obviously, they are running from the physical threat that the state of Minnesota will force Daniel to undergo the unpleasant treatment. Equally if not more importantly they are running away from the psychological threat that acknowledging the existence of the cancer and its life threatening nature poses.

As a mother myself, I cannot imagine anything worse that hearing that your child has a life threatening illness, and needs brutal treatment with no guarantee of survival. The mere thought of explaining that to a child, forcing a child to endure chemotherapy and witnessing his or her suffering makes me sick to my stomach. I don’t doubt that the reality is far worse than my worst imaginings. The only other choice is to pretend that the whole thing is not happening; it is just some perverse mistake; that the cancer will go away by itself or with gentle, “natural” treatments.

Daniel’s mother clings desperately to that belief. For her, it is an absolutely essential psychological coping mechanism. Unfortunately, it will almost assuredly result in Daniel’s death. This case is being reported in the media as a battle over who has the right to decide treatment for a child, the parents or the State, and legally, of course, that is exactly what it is. But psychologically, it is something else entirely, and it is important that everyone analyzing this case take note. In reality, it is about the mother’s need to protect herself psychologically from devastating news vs. her son’s right to receive life saving treatment.

That’s why the State is right to vigorously pursue the Hausers and force Daniel to have the brutal, but life saving treatment. Mrs. Hauser does not want to hurt her son; she loves him desperately and her willingness to single handedly defy the State of Minnesota proves it. Yet ultimately, the decision to run away is about her and her needs, not about Daniel and what is good for him. She needs to believe that he doesn’t have cancer, or that his cancer is not serious, or that she can treat him “naturally.” She may need to believe that, but it does not give her the moral right to forfeit his life to make herself feel better temporarily.

That’s what’s really at stake here: a mother’s need to protect herself by pretending that her child is not deathly ill vs. a child’s right to life saving treatment. In the best of all possible worlds, someone would be able to break the thick shell of her denial and get her to acknowledge reality. Her child is dying, no amount of pretending will prevent his death, and medical treatment represents the only chance to avert the disaster that she cannot bring herself to contemplate.

Daniel’s mother doesn’t realize it, but she and the State are in total agreement. More than anything else, she wants Daniel to live. More than anything else, the State of Minnesota wants Daniel to live. Her denial of reality is completely understandable, but that’s what it is: denial. And no child should have to die because his mother cannot face reality.

Before a doctor starts out in practice, he or she has had years of rigorous training. In the case of an obstetrician, that means four years of medical school, the first two in the classroom, the last two in the hospital working with patients. It also means four years of additional training when you are a doctor, but working under supervision. During those four years, you work 80+ hours a week, care for thousands of patients, and make hundreds of major decisions. Nonetheless, in the back of your mind, you know that you are not ultimately responsible. You can always ask the attending (senior physician).

Therefore, it comes as something of a shock the first time a nurse looks to you for the decision in the midst of a crisis. Your first thought, sometimes even said aloud, is “let’s ask the attending,” before you realize that you ARE the attending. Most doctors learn over time to automatically accept responsibility for whatever is happening, and some, like me, learn the hard way.

One of my first patients in practice was a woman expecting her third baby. Her pregnancy was uneventful, but at every doctor’s visit, her baby was in a different position. That’s pretty typical at first. Until the last months of pregnancy the baby has lots of room to move, and can easily do somersaults if so inclined. Toward the end of pregnancy, the baby takes up one position, typically head down, and no longer has enough room to change position. In this case, even in the final weeks of pregnancy, the baby was still changing position. One week it would be breech (bottom down); next it would be head down; occasionally it would even be sideways (also known as transverse, and a very unusual position).

In the last few weeks, the baby seemed to stay in the transverse position. A baby in the transverse position is undeliverable. The baby can come through the pelvis only head down or bottom down. It simply will not fit sideways. Prior to safe C-sections, women who labored with a baby in the transverse position simply died, and the baby died with them. Nowadays, the standard method of delivering a baby in the transverse position is a C-section. Sometimes, though, you can coax the baby from the transverse position to the head down position. This is called “version.” It involves using your hands to literally turn the baby to the proper position.

That’s what I discussed with this patient. She had had two uncomplicated vaginal deliveries. It seemed a shame to perform a C-section when we might manipulate the baby to the head down position.

The patient was very enthusiastic about the idea of version, even after I explained that a version was not without risks. Manipulating the baby through the walls of the uterus can potentially damage the placenta, necessitating an immediate C-section. Getting the baby to turn can potentially cut off blood flow to the baby if the turning causes an unsuspected knot in the cord to tighten. Once again, an emergency C-section would be necessary. For these reasons, versions are done in the hospital, with an OR team ready to go if needed.

We made a plan. If the version were successful, and I was able to turn the baby from transverse to head down, we would start induction of labor immediately thereafter, so that the baby would have no opportunity to turn back to an unfavorable position. If, on the other hand, I were unable to turn the baby, we would proceed directly to C-section, since the inability to turn the baby would mean that a C-section was unavoidable. I hadn’t considered that there were other possibilities.

The patient showed up for her version on the appointed day, and the baby was still transverse. Under ultrasound guidance, I gently manipulated the baby and had no trouble getting it into the favorable head down position. While we were celebrating our good fortune, the baby flipped back to the transverse position. The nurse and I could easily see it happen by watching the patient’s abdomen, and the patient could feel it. That was unexpected.

I tried again. Again I had no trouble getting the baby to move, but it promptly popped back to the transverse position. I turned it a third time, and again it turned back. I told the patient that we would need to give up. It wasn’t going to work, and we should proceed to a C-section, just as we had planned. I left the room to round up the surgical team.

A senior obstetrician was sitting at the nurses’ station and I casually related the story to him. He offered to examine the patient and give his recommendations. I was relieved. Here was someone with excellent clinical judgment and decades of experience. I would not be making the decision alone. He examined her and we stepped out to consult.

“Don’t do a C-section now,” he said. “The baby is small. You saw how it could easily be turned. Just leave her alone and I guarantee that she will be back in a few days, in labor, with the baby in the head down position.”

I was relieved, but somewhat skeptical. “Do you really think so? Maybe I should just do the C-section now like we planned.”

“I’m sure of it,” he replied. “I’ve seen it happen many times.”

I talked to the patient, and she happily agreed to the plan. She wanted to avoid surgery if at all possible.

Sure enough, the senior obstetrician was right. The patient returned two days later in labor, and the baby was head down … and dead.

After the delivery, we could easily determine the cause. There had been a true knot in the umbilical cord. While the baby moved of its own accord into the head down position, the knot had tightened, depriving the baby of blood flow and oxygen, leading inexorably to the baby’s death. Telling her that the baby had died was one of the hardest things I’ve ever done. Knowing that her baby was dead, she still had to go through labor.

It often seems that when disaster strikes, it is inevitably followed by more disaster. It’s hard to imagine how this situation could have gotten worse, but it did. The baby was big, and during the delivery, the mother experienced a very unusual complication. She ruptured her symphysis, the piece of cartilage that holds the two halves of the pelvis together in the front at the pubic bone. Much to our horror, the nurse and I literally heard it pop. The patient could not walk for months thereafter.

The patient also developed a raging infection that required a week-long hospitalization for IV antibiotics. She ultimately went home to a long course of oral antibiotics, a walker, and months of physical therapy to help her as her ruptured symphysis healed. I must have apologized to her a thousands times, but, of course, I couldn’t change what happened.

What did I learn from this dreadful experience? I learned that if I was going to have to take responsibility for bad outcomes, I ought to be sure that it was my decision and not someone else’s. I had felt at the time of the failed version that the C-section was the right thing to do, but I allowed myself to be talked out of it. It’s true that the senior obstetrician had more experience than me, but I had been looking for a way to avoid responsibility for performing a C-section on a woman who had had two previous vaginal deliveries.

The recommendation from the senior obstetrician allowed me to push off the decision, and I had naively thought that no harm could come from pushing it off. Either she would show up in labor with the baby head down, or she would show up in labor with the baby in the transverse position and we could do the C-section then. I had never considered the possibility, albeit rare, that she could show up with a dead baby.