Octomom: The fine line between patient autonomy and medical negligence

November 20, 2010Carole No Comments »

Remember “Octomom” Nadiya Suleman? She was the IVF patient who conceived eight babies in July 2008 after a large number of fresh embryos were transferred. The total number of embryos reported to be transferred has varied from 6 transferred (two split into twins) or 12 transferred and 8 implanted. In any case eight babies were born.  She already had six children at the time of her transfer, leaving her with 14 children to support as a single unemployed mother.  One new report says she still has 29 embryos in storage, pending disposition.  Her physician, Dr. Mi­chael Kam­rava, is at risk of losing his California medical license. His hearing in front of the California medical board is currently wrapping up.

Aside from transferring so many embryos, what was unusual in the Suleman case was that she underwent numerous fresh IVF cycles and cryopreserved excess embryos repeatedly. According to Dr. Victor Y. Fujimoto, director of UC San Francisco’s In Vitro Fertilization Program, who testified as an expert in Dr.Kamrava’s malpractice hearing,  Ms. Suleman underwent more than a dozen cycles and has 29 embryos stored, pending disposition.

The octopulets are seventeen months old. Here’s a picture of the kids (older siblings plus octoplets) doing a milkshake commercial. They are pretty darn cute. Fortunately, if news reports are accurate, they appear to have escaped any serious medical problems. This is an exceptional outcome and I hope the kids continue to grow well and stay healthy.

Here are some of the vexing ethical questions that have arisen from this case.

Qualified to parent? Some have raised the issue of whether Ms. Suleman was fit to parent on the basis of being unmarried, unemployed and already having six children. Most of us in those circumstances would probably decide that trying for more kids under those circumstances is not the wisest course of action. The ethical question is who gets to decide who can parent? We don’t apply a test to the rest of the population so it seems an unfair burden to place on people who need ART to conceive. The state of California is arguing that the doctor committed malpractice when he didn’t recommend psychological testing for her when she wanted more kids after the first six. I would go crazy with so many kids but is it crazy to want so many? What about the reality TV show family, the Dugars, who don’t believe in birth control and keep having kids. They are up to nineteen kids now and don’t plan to stop enlarging their family, God willing. Well, I might think they are crazy but I don’t think I have a right to stop them.

Paying for healthcare and autonomy? Some would argue that the society does get to decide if society is paying for it. It is unclear who paid for the IVF  treatments that Ms. Suleman received. Some news accounts say that the state medical system paid for IVF which is surprising, if true. The state tax-supported funds did pay for the high risk neonatal care the newborns received.

Another argument for widespread insurance of IVF is that insurance coverage tends to ensure that excesses such as those in the Suleman case are reigned in. Insurance companies often influence and modify medical practice by refusing to pay for medical decisions that are outside medical guidelines especially if ignoring guidelines might result in outcomes such as higher order multiple gestation pregnancies which are even more expensive for insurance companies. And many people are more inclined to accept restrictions, if in return, the insurance company will pay the bill. If the patient is paying the entire bill, then it seems reasonable that the patient expects to have more choice. Others argue that the decision to have children is so personal, it should not be abridged by any party, regardless of expenses involved in exercising that choice.

Embryo Disposition Responsibilities? What obligation, if any, do patients have to use all available frozen embryos in transfers before proceeding on with a new fresh cycle? Storing up embryos from a patient’s fresh cycles isn’t really that unusual. If couples have a single embryo left over, it wouldn’t be unusual for a physician to recommend that the patient wait to do a frozen cycle until more excess embryos can be added to the single stored embryo after a second fresh cycle. The excess stored embryos from the first and second fresh IVF cycles can then be combined and transferred in an frozen embryo transfer (FET) cycle after the second fresh cycle.  This stockpiling practice increases the number of embryos available for FET which some physicians argue increases the chances of pregnancy from the FET. What is unusual is the scale of the stockpiling in the Suleman case. According to Dr. Fujimoto, she underwent a dozen fresh cycles to generate the embryos that were transferred and stored.As culture to blastocyst and vitrification methods are widely adopted, the stockpiling approach becomes less valid. One good quality expertly-vitrified blastocyst should be all you need.

Participation in a Research Study without Consent? New allegations in the malpractice case include that Ms. Suleman and two other patients participated as subjects in a fertility research study to test out a device Dr. Kamrava was developing to look at the inside of the uterus during the transfer. His study was published in an Iranian medical journal. Ms. Suleman says she didn’t know she was a “guinea pig”

The medical board is also questioning the care Dr. Kamrava gave two other patients in his practice, a 42 year old patient who conceived quads after he transferred seven embryos, one of which died in utero. He is also being held responsible for not referring a woman with a “questionable” cancer lab test result to a specialist. She was belatedly diagnosed with advanced ovarian cancer.

Where does patient autonomy end and medical responsibility begin? This is perhaps the most disturbing ethical issue. I write this blog because I am a huge fan of patient participation in their own health care. I strongly believe patients have a right and possibly even a responsibility to know enough about their medical condition to play a role in their care. Especially in fertility care which is usually not life threatening so there is time to become well-informed. But I also know that most patients don’t go to medical school and at some time we have to rely on and trust our doctor’s expertise, knowledge and experience to guide us. But where do we draw that line between taking control and giving it up?

You can watch an interview with Dr. Kamrava here. He doesn’t sound like a monster. He sounds more like a guy who got in way over his head. I actually felt a little bit sorry for him by the end of the interview. He is despised by his medical colleagues and shunned by ASRM, reproductive medicine’s professional society. He might lose his medical license and that might well be the right decision. I don’t know. But if he does lose his license, you can bet there are other doctors out there who but for luck could be in the same position.

Some of the professional distancing and shunning is hypocritical. The professional guidelines are to only transfer two blatocysts in women under 35. Some physicians think one blastocyst is even better and are working toward making single embryo transfer the rule, not the exception in their practice because of the huge obstetrical benefit to having singletons.   Other physicians think that three (or more) is fine even in young women when “fill in the blank special circumstances” exist. So in some cases,  physicians will disregard the professional guidelines in favor of  their medical judgement. Their peers may or not agree. Not following the professional guidelines is not illegal. Guidelines are not laws. Medical decisions are not always clear cut. In my opinion, Dr. Kamrava is not the only physician who has let a patient do something that is probably against their best medical opinion or professional guidelines.   Most of the time, eight don’t implant and no harm done.

If you have seen any interviews with Suleman, you don’t go away with the feeling that she was up late poring over Resolve websites or other sources of IVF info either to make her best medical choice. How could she? She had six kids already for crying out loud! So who was ultimately responsible for transferring more embryos than was considered safe by the  professional guidelines? Is the doctor responsible for this choice? Or is the patient responsible for this choice? Who should be responsible?

© 2010, Carole. All rights reserved.

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