Many Americans agree that much of the aggressive medical care provided at the end of life today is unhelpful and can even be burdensome. Much of it is costly and wasteful. But can we agree on the specifics? What should happen in this case or that? More importantly, do we need to agree?

When President Obama spoke recently about the medical care his grandmother received before she died, he put it in the context of health care reform. His 85-year-old grandmother, diagnosed as terminally ill with cancer, received a hip replacement after a fall. While the idea appeared to be that the new hip would make her remaining life more comfortable — and therefore worth the discomfort and risk of the surgery — what happened instead is that she died two weeks later as a result of it. President Obama said that, had the surgery not been covered by Medicare, he would have paid for it himself if need be, but that the situation did raise the question whether asking society to pay for such treatment is a “sustainable model.”

Was President Obama suggesting the rationing of health care services? The comment was made in the context of health care reform. Conservative commentators latched on to the idea, raising the specter of capricious governmental intrusion into private decisions.

Others, like Ellen Goodman, were more thoughtful, pointing out that more aggressive treatment is not always better treatment. Many times what is needed is simply more conversation among doctors and patients and families about the goals of treatment. We might then save both money and heartache. Avoid the chaos and confusion that accompanies last-ditch efforts to do something. Allow the “peaceful” deaths we all want — maybe even at home.

The essential idea here is that better end-of-life care can cost less and this less costly care can be achieved without government intrusion into private decisions.

But government is already deeply involved in our health care in ways we don’t see or understand. With its heavy reimbursement hand (the government pays for 45% of Americans’ health care costs), it incentivizes performing procedures for which a provider might be paid thousands of dollars rather than engaging in careful conversations about whether to do them, for which one may be paid nothing. This further incentivizes medical students to become specialists who do expensive procedures, rather than becoming internists or geriatricians who might coordinate care to ensure that the health care goals of the patient are honored. Once in the hospital, it’s difficult for the patient to know who his doctor is. There are at the same time so many and no one. How can this patient have a conversation with a doctor who doesn’t exist?

As our country approaches health care reform, we don’t have to decide that an 85-year-old terminally ill patient should or should not have a hip replacement, either in a specific case or as a rule. We do need to learn more about the probable outcomes of such procedures and what patient characteristics make certain odds more or less favorable — knowledge with such obvious value it’s curious why there isn’t more of it. The Obama administration is already putting money into such research and plans to emphasize it in the future. But to what use might we put this information? Not rationing. Health care decisions are not simply calculations of physical well-being, discomfort and vulnerability. These decisions also involve emotional calculations of an intensely personal — and interpersonal — nature.

Policy makers can’t decide whether a hip replacement should be undertaken so that a woman might attend her grandson’s inauguration or whether it would carry too much risk of resulting death prior to his election. We don’t want them making these decisions, and we likely don’t need them to.

Who needs this information the most are physicians and their patients. Even more important, they need the freedom and the invitation to talk together about the options before them. We’ve known this for a long time. But we haven’t yet created a system to provide it — in fact, the current financial incentives work against it. Expensive tests, procedures, and hospital stays are the norm even when unwanted and unhelpful.

As we move forward with health care reform, let’s put our money where our mouth is. Let’s create financial incentives — rewards even — for conversation and consultation and coordination. A lot of the wasteful and unwanted care should fall away.

Lois Shepherd
University of Virginia

• Robert McElvaine on All Things Considered – Today, Friday, to discuss FDR’s letters from Americans and the letter-reading habit President Obama has picked up. I know, we teased you earlier in the week because we thought his conversation would air Wednesday or Thursday. Well, it should be today, for reals. You can listen to the podcast anytime after 7pm at ATC’s webpage.

• Other university press blogs discuss Assisted Reproductive Technology – NYU Press has had special interest in the fertility industry lately, too. Author Naomi Cahn offers a legal perspective on the octuplets case, plus an op-ed on reproductive technology law in reference to a 60-year-old woman giving birth.

• Community Dinner with Mama Dip! – Sunday at 1pm at McDougle School Cafetorium in Carrboro. “Sit down with a stranger, leave with a friend.” Menu organized by our beloved Mama Dip. This is the legendary annual Orange county community meal, with food from local restaurants, live music, and more. Tix are $8/adult, $3/kids 10 and under, and available only in advance. Check their website for details.

• Anne Firor Scott discusses Pauli Murray – Sunday, 3pm, Durham County Library. Scott speaks at the event “Standing Tall in Proud Shoes: Pauli Murray’s Life and Legacy” at the main branch of the library. Scott is editor of Pauli Murray and Caroline Ware: Forty Years of Letters in Black and White.

• Could you eat on just $1 a day? – Rebecca Currie, who helps us at the Press with our in-house database, is doing just that (and no, it’s not because we aren’t paying her a fair wage!). She’s out to prove that you can still eat healthily (healthfully?) on a super-skimpy budget. The NY Daily News has written an article about her, and you can read her blog, Less Is Enough, to see how and what she’s eating.

• We’re now crawling all over the interwebs! – You can now follow us on Twitter and on Facebook. Oh yeah.

Have a wonderful weekend!

ellen

update: Holy Snuggly McSnuggletons, Batman! The Chicago Blog just upped the ante on bringing the cute to university press blogging.

We’ve had a lot of passionate responses to Karey Harwood’s recent guest post about the ethical issues surrounding the California octuplets case. Harwood gave some helpful responses for further reading in the comments thread to that post. Here, we’re pleased to have a follow-up post from her, in which she addresses the pressures on patients and providers in the fertility industry, the health care and health insurance systems in which the industry operates, and the ethical  distinctions between being a patient and being a consumer. Harwood is author of The Infertility Treadmill: Feminist Ethics, Personal Choice, and the Use of Reproductive Technologies.

What the octuplets case has clarified for me has nothing to do with Nadya Suleman. In fact, I would prefer to know less rather than more about this woman and her family of origin. Suleman has become a too easy target for Americans’ exasperation with excess, and it is disheartening to witness the vilification of this 21st century version of a despised archetype — the welfare queen (alternatively: the irresponsible mother, the hysterical woman, etc.). Even if Suleman is herself not a particularly sympathetic character, she is not the heart of the problem.

The larger, more important problem has to do with our health care system and its many inherent flaws, including the financial incentives that perversely encourage multiple embryo transfer and our collective inability or unwillingness to define a boundary between fertility treatment as legitimate therapeutic procedure and fertility treatment as elective and highly profitable consumer good.

The Atlanta Journal-Constitution recently reported that fewer than 20% of U.S. fertility clinics actually follow the recommended guidelines regarding how many embryos should be transferred in a single cycle of in vitro fertilization (IVF). Since these guidelines are written by a professional organization, the American Society of Reproductive Medicine, and do not have the force of law, it is not surprising that many clinics would ignore them. It is nevertheless quite startling to realize that more than 80% of clinics openly flout professional guidelines. The AJC explained that doctors are “bowing to patients and competitive pressures.” It is important to understand what these pressures are and where they’re coming from.

The competitive pressures include, first of all, the pressure on fertility clinics to demonstrate a decent success rate, usually defined as the live-birth rate or “take home baby rate” following IVF. The one law we do have in the United States regulating the infertility industry is the Fertility Clinic Success Rate and Certification Act of 1992, which requires fertility clinics to report their success rates to the Centers for Disease Control and Prevention. The CDC, in turn, is required to publish its annual ART Report, a wealth of statistical information that serves many purposes, including providing a handy caveat emptor to prospective patients who can compare the success rates of different clinics before choosing the one where they will spend their money (generally more than $10,000 per IVF cycle) and take their chances.

In an effort to improve their clinic’s success rates, fertility doctors around the country no doubt use multiple embryo transfer to improve the odds of pregnancy. Statistics show that the probability of a successful pregnancy is proportional to the number of embryos transferred to a woman’s uterus. Even though one might surmise that if the conditions are right for one embryo to implant, the conditions will be right for eight embryos to implant, and, conversely, if the conditions aren’t right for implantation, it matters little how many embryos are transferred, in actuality success with embryo transfer is generally not an all or nothing proposition. Because there are so many factors involved in any given IVF cycle, including the “quality” of each individual embryo, the specific infertility problems being circumnavigated by IVF, the age of the woman, etc., the seemingly crude approach of putting in several embryos at once and hoping against hope that one of them “takes” has become a standard medical practice – at least in the United States — even though the serious risks of multiple gestation pregnancies have been known for some time.

In addition to the competitive pressure on fertility clinics to succeed, or to try to outperform their neighboring fertility clinics, there is also tremendous pressure on patients to succeed with the very first cycle of IVF. Since many patients pay for IVF out-of-pocket, patients often cannot afford more than one cycle. This creates an obvious financial incentive to do a multiple embryo transfer. Studies have shown that a single embryo transfer followed up with a second attempt using a single frozen embryo is about as successful as one double embryo transfer, and it dramatically decreases the chance of a multiple birth. This is great news! But only for those who can afford that second cycle of IVF.

Currently, there are fifteen states that mandate health insurance coverage for infertility treatment. The vast majority of health insurance plans do not cover IVF, even if they do cover diagnostic or unequivocally “therapeutic” procedures (e.g., treatment for endometriosis) that treat the underlying cause of infertility. It is likely that increased insurance coverage for IVF would encourage the practice of single embryo transfer by weakening the financial incentive (at least on the patient’s part) to do a multiple embryo transfer.

However, insurance coverage of IVF remains controversial. IVF hovers in a gray zone between a legitimate treatment of a legitimate medical problem (infertility) and an elective procedure more akin to cosmetic surgery. Is a single woman “infertile” in the same way that a woman who has blocked fallopian tubes is infertile? Until we can talk openly and civilly about the parameters of reproductive freedom, our hands are tied. The financial incentives that encourage multiple embryo transfer will remain intact.

Finally, we must not forget that our fee-for-service infertility industry works very nicely just the way it is for those who profit from it. In an article about university employees who substantially out-earned university presidents in the 2007 fiscal year, the New York Times reported that fertility doctors are among the highest paid. Dr. Zev Rosenwaks, for example, of the Center for Reproductive Medicine and Infertility at Cornell earned $3,149,376. And Dr. James Grifo, a professor of obstetrics and gynecology at New York University — and the doctor whom I quoted in my last blog post for his ardent insistence that we not “police” reproductive decision-making — earned $2,393,646.

Personally, I’d rather see Nadya Suleman sort out her problems in private and hold the lens of public scrutiny more directly on those who have the most invested in maintaining the status quo.

Karey Harwood
North Carolina State University

update: This article is cross-posted at womenmakenews.com

I’m in charge of the blog for a while and I’m going to write about things that I think should be brought to the public’s attention.  And Anoop Desai is certainly one of those things.

Back in a former life I was a Children’s Librarian in two Wake County, North Carolina Public Schools.  Both Hunter and Fuller Elementary schools were Academically Gifted Magnets meaning both had more than their share of bright, interesting kids with lots of personality.

One of those (Fuller) kids was Anoop Desai.  He was a bit small for his age, had a round face and was, in the best sense of the word, precocious.  He was smart, knew he was smart, but didn’t make a big deal out of it.  He was funny in a way that made both his peers and his teachers laugh.

I found him on Facebook a few years back and was happy to see that he was a student at UNC – Chapel Hill and was doing well.  He was one of those kids who could go far and it looked like he was doing just that.

And now he’s one of the final 36 on American Idol.

So in a blatant attempt at swaying the vote I’m asking all of you to join in with all of the 3,000+ people on Facebook who have committed to calling in for Anoop tonight and make those call.

Vote early, vote often! Let’s have a UNC student (and barbecue lover!) staying on American Idol!

– tom

Some of the most important facts of the California octuplet case may not be known until the first movie is made telling Nadya Suleman’s story. According to the publicist Suleman has hired, the mother of fourteen is keeping some of her story “reserved” for now.

In the meantime, the “facts” that have emerged about Suleman and the conception of her octuplets are somewhat murky. Her mother has been reported as calling her daughter “obsessed” with having children, raising the possibility in some people’s mind that she is mentally unfit or unstable. Yet others, her spokesman included, attest to her being quite bright, very engaging, the ideal patient.

We know that Suleman gave birth to eight babies. But what exactly were the circumstances of their creation? Her mother was reported as saying that fewer than eight embryos were implanted in Suleman, but that they “multiplied.” Nadya Suleman herself now says that six embryos were implanted at once, and though it is a rare occurrence, two of the embryos divided to make a total of eight. Suleman also revealed that she had six embryos implanted for each of the previous IVF cycles that resulted in her six older children.

Multiple embryo transfer is a practice unequivocally discouraged by the American Society for Reproductive Medicine, which writes the practice guidelines for doctors in this field. Their recommended limit for a woman Suleman’s age is 1-2 embryos transferred at a time, but their recommendation is nothing more than that. There are no penalties for doctors who implant more. Multiple embryo transfer is more stringently regulated in the United Kingdom, where the legal limit is two and an even more cautious norm of “one embryo at a time” is emerging. But despite the absence of similar regulations here, U.S. doctors are well aware of the risks of a multiple-fetus pregnancy. Why would Suleman voluntarily engage in such a risky pregnancy and why would her doctors acquiesce to assist in such a risky plan?

Whatever the motives of Suleman and her doctors, one of the most controversial ethical questions raised by this case is whether anyone other than the competent consenting parent-to-be ought to make judgments about the kind of conditions into which a child is born. Is a single-parent family inherently inferior to a two-parent family? Is a large family inherently inferior to a small one? Does a child deserve “better” and if so who defines what that is?

While the Catholic Church proceeds unwaveringly in defining the ideal conditions into which a child is born, reiterating its teachings in the recent document Dignitas personae, other voices in the public debate are wary of insisting on a two-parent, heterosexual, married couple as the true ideal. Most people, if they are brave enough to venture a judgment at all, will insist on certain qualities for a healthy family – like the mental stability of the parent(s), the ability to provide for the material needs of the child, and the ability and willingness to love the child – rather than insisting that these qualities can only be found in a family form of a particular shape.

Suleman, a single mom, should not be automatically judged by virtue of her singleness. But whether she has brought her 14 children into the “best” conditions very much remains to be seen.

Given that most commentators do not want to preemptively judge Suleman a bad parent, the greater ethical concern has centered on the potential harm done to her offspring by virtue of entering the world as octuplets at about 30 weeks gestation. The data about the risks of multiple births are firm. According to the CDC, the infant mortality rate for multiple births is more than five times greater than the rate for single births (a difference in 2004 of 30.46 deaths per 1000 live births versus 5.94 deaths per 1000 births). Of course everyone is grateful that Suleman’s octuplets are surviving, but we do not yet know what, if any, impairments they will suffer. There are risks of vision problems, learning disabilities, cerebral palsy, problems with organ development, and other developmental delays, as has been widely reported.

In the end, what bothers me the most about this case are the bad faith arguments of fertility doctors who wash their hands of moral responsibility: “I don’t think it’s our job to tell them how many babies they’re allowed to have. I am not a policeman for reproduction in the United States. My role is to educate patients,” claimed Dr. James Grifo, professor of obstetrics and gynecology at the NYU School of Medicine, who was interviewed for his opinion about the Suleman case but not involved in it. Since when have doctors abandoned their role to guide patients with good judgment about what constitutes an unacceptable medical risk? Doctors who rationalize their actions by trumpeting patient “free choice” understandably lead the public to suspect at least one ulterior motive: the profit to be made in servicing reckless patient-consumers.

In addition, I have serious problems with the injustice of allocating any medical resources, whether publicly or privately financed, for the creation of multiple gestations (let’s say triplets and higher). I cannot help but think of the millions of uninsured Americans, including millions of uninsured children, who suffer grievous harms on a daily basis due to their lack of access to even the most basic health care, as well as the many, many infertile couples who lack the financial means to afford even one round of IVF, let alone seven. The resentment Americans feel toward Nadya Suleman and her doctors is very real, and I believe it is not unjustified. We cannot let our earnest (and commendable) desire to be respectful of individuals’ choices blind us to the social impact of an accumulation of selfish individual choices. This is simply not a fair distribution of resources. And the coming onslaught of movie and book deals that will bring further profit to Suleman is nothing short of reprehensible.

Karey Harwood
North Carolina State University

ed. update 2/16/09: this article has been cross posted at womenmakenews.com.

ed. update 2/25/09: please see Harwood’s follow-up post as well