By now, the story of Nadya Suleman is well known. The 33-year-old California woman gave birth to octuplets—only the second set born in the United States—on January 26. Within a few weeks, what was initially reported as a heartwarming story of medicine’s finest hour had ignited a nationwide backlash as details of Suleman’s situation became known. The divorced single mom already had six children younger than 8 when she underwent the fertility treatments that led to an eight-baby bonanza.
Should Suleman have been allowed to undergo the additional treatments? Did her medical team violate guidelines by implanting more than the generally accepted number of embryos? Is it fair to burden taxpayers with the costs of raising her large family—particularly in the current economic climate?
Clinician Reviews does not profess to have the answers to these questions. But we did ask a panel of editorial board members and other experts for their take on the thorny ethical questions Suleman’s case has raised.
How do you feel about a woman with six children younger than 8 receiving fertility treatments and delivering another eight babies?
Stephen Nunn, MPAS, PA-C, a founding member of the Association of PAs in Ob-Gyn, who worked with the first successful in vitro fertilization program in Arizona for 18 years: The issue for me isn’t so much that she already has six children, but the real and serious risks to both the mother and fetuses with multiple gestation. The American Society of Reproductive Medicine has established guidelines for the number of embryos to be transferred, which for this patient would be three. It appears these guidelines were not used in this case. This would not have generated the same response had Ms. Suleman received fertility treatment in an effort to achieve a singleton or, at most, twin gestation.
Obviously, we do not know all the details; however, I wonder why so many embryos were placed. If there were a total of seven, as the press has stated, then there would have been more than one opportunity to achieve a single pregnancy. Even if the mother did not want the other embryos destroyed, she could have donated them to another woman.
Rebecca Scott, PhD, PA-C, Clinical Coordinator in the Physician Assistant Program at Northeastern University, Boston, and an elected member of the Board of Health in Sandwich, Massachusetts: I have been thinking about how this really illustrates a tension that we’ve had in our history of the rights of the individual versus the rights of the whole community. We have this long tradition of saying, “Everybody ought to be able to have children.” This seems to fit into that continuum of the individual’s right being very strongly upheld in this country over, perhaps, what is best for the good of society.
This is so interesting because other societies are quite up-front about their goals for their population. I remember traveling in Hungary at one point, where the people were not reproducing enough to replace the population. So the government said, “It’s in our best interests to have enough people to support the society,” and they actually subsidized moms with the equivalent of a factory worker’s wage to stay home with children for three years, up to three children’s worth.
The big thing that troubles me about this is where do the rights of the group get accounted for? Should we be paying tax dollars to subsidize people who want to have children?
Austin D. Potenza II, JD, a Phoenix-based attorney and Adjunct Professor at the Arizona School of Health Sciences, where he has taught a course on medical ethics for 10 years: I think in our society everything has to be open for discussion, but we have to realize that at some point it’s just discussion. Under current ethical thinking, the most important perspective is that of a competent patient. We as a society don’t make these kinds of decisions—whether it is getting fertility treatment or having multiple births—for people.
A close second is the perspective of the infants, but it is problematic to base a societal response on what is right for children when it comes to fertility and multiple birth. Is being born into a family of 14 somehow worse than not being born at all? If we’re trying to save children, what exactly are we saving them from? And why look at just these children? If we try to have a responsible answer to these questions, it is myopic to look only at this family.
Think about the thousands of children who are born into horrible poverty, hunger, abuse, and neglect. We don’t regulate their parents’ reproductive decisions. And that’s just considering our own country; if we really want to be concerned about children, think about places like Sierra Leone, where the infant mortality rate is about 25%. Although the consideration of the children is compelling, it is much more important to consider how to help them once they are born, rather than thinking of the solution in terms of fertility and multiple births.
The next important ethical perspective is that of the caregiver [discussed in depth later].
Finally, society is a stakeholder, and this seems to be the perspective from which most people are approaching the issue. The typical questions you’re going to hear are, “Is the cost of care for this mother and these children going to fall on the rest of us as taxpayers? Is this part of what’s straining the health care and social support systems?” These are all valid questions, but they beg an awful lot of other questions that we have to answer first. For example, what should we spend our collective money on? Who decides?
While it is understandable why the public is upset by this story, at the same time, does anyone have the right to impose restrictions on someone’s procreation? Where, if at all, do we draw a line in the sand?
Marie-Eileen Onieal, PhD, CPNP, FAANP, Director of Medical Services for the Massachusetts Department of Youth Services and Clinician Reviews NP Editor-in-Chief: I think the line between moral soundness and legal rights was crossed when the woman put her desires to have more children above the needs of the children she already bore. Before the octup-let pregnancy, she needed more than minimal assistance to care for the six children she already had; at least two have special needs requiring more attention and care.
I think, especially in the face of the fact that she is almost totally dependent on others to help her provide for her family, we as a society have a moral and legal obligation to impose restrictions on procreation (especially when one’s procreating consumes as many resources as this woman consumed).
Rebecca Scott: I don’t think sending hate mail and death threats is any way to respond in a civil society. But I think we do need to say, “No, it is not all right for somebody to be using taxpayer dollars to subsidize,” you know, whatever it is that the individual wants to do that is way above and beyond what most of us would consider reasonable.
If we look at the welfare-to-work initiatives that took place under the Clinton administration, that’s a start on an answer. We made the decision at that point that it was OK to say to people, “You have to get off welfare. You must go to work.” But we also enabled people to do that by saying, “We will subsidize Medicaid so that you can continue to get coverage at these low-paying jobs where you don’t earn enough money to be able to pay for health care.”
Stephen Nunn: To me, the principle here is Primum non nocere or “First, do no harm.” A twin pregnancy is considered high risk just because it’s a twin pregnancy. Those risks skyrocket with each additional fetus. The main risk here is to the fetuses, their individual and collective survival, and the potential for future problems after birth, such as cerebral palsy, blindness, and learning disabilities. So, the risks and benefits have to be weighed on an individual basis.
Personally, I can see no circumstance to justify transferring more than four embryos—ever! Holding to this guideline is not restricting a woman’s right to procreation. It’s not saying “No,” it’s saying, “Not this many.”
Although the obstetrician’s patient is the mother, not the fetus, I believe the fertility specialist can’t take such a narrow view of his or her responsibilities. Ordinarily, an obstetrician becomes involved after pregnancy has occurred, while the fertility specialist is involved prior and thus has a greater duty in regard to the potential eventual outcome. Too much success can lead ultimately to failure.
Moving forward, where do we go from here? How might these issues be addressed?
Rebecca Scott: What I’m afraid is going to happen is that we’re going to react in a heavy-handed way and set up all kinds of oversight and come at it with a legislative approach—you know, somebody in the state legislature’s going to say, “Well, we’re going to make a rule about this.”
What I hope will happen is that we’ll have a good deal of dialogue about what’s appropriate and that that dialogue will include fertility specialists, public health experts, citizens in general, and government/public health departments and that the dialogue will try to come out with some policies and procedures to guide thinking in this kind of situation.
Austin Potenza: It’s very difficult for me to imagine any legislature taking on this issue. It would be politically impossible to attempt to regulate who can have children, and how many. Think back to the Terri Schiavo case, which was such a travesty in Congress. Everybody was trying to get involved, and it was obviously completely beyond the scope of their expertise and their ability. It was just a political nightmare. This is similar because it is government involvement in an intensely personal decision, in a country dedicated to personal freedoms. If we get involved in birth regulation, we’re repeating China’s mistakes and going against the fundamentally individual-rights focus of our society.
The next most likely—but still unlikely—step would be federal or state Medicare/Medicaid programs trying to regulate what kind of services they’ll pay for, in an effort to prevent these multiple births. In most cases, I don’t believe public or private money is available for fertility treatment, but I’m not expert in that area. Certainly, private insurers can decide, by contract, what they will and won’t cover, but when the government gets involved, it becomes more problematic. That could be seen as the state mandating forced embryo reductions.
The only place that this could be regulated with any type of efficiency would be in the professional responsibility codes and the licensing boards of the various health care specialties.
What role can and should health care providers play in situations such as this? Where do their responsibilities end?
Randy D. Danielsen, PhD, PA-C, DFAAPA, Dean of the Arizona School of Health Sciences at A. T. Still University and Clinician Reviews PA Editor-in-Chief: We as clinicians must first require patients to be competent in their decision making, indicating the ability to make choices based on an understanding of the relevant consequences of their action. For the most part, this is subjective and relies on the skills of the clinician in recognizing the ability of the patient to understand and give consent.
All clinicians have an obligation to be patient advocates in their area of expertise, but this does not give them the authority to overrule patients (except in certain situations).
Marie-Eileen Onieal: Given that this patient already had six young children, at least two with special needs, I think the role of the provider is to counsel the woman against trying to have more children. Providing for a large family takes energy, patience, and finances. I do not doubt that she loves the children; I just doubt that she is able to provide for their developmental needs—even the most basic physiological and safety needs. Clearer heads must prevail in situations where the person may not have sound judgment or may not have fully considered the consequences of his or her decision.
I think that those professionals whose specialty is infertility and assisting women in getting pregnant must have a moral code, a gauge if you will, that not only puts a stop to repeated failed attempts but also repeated successful births, especially if a pregnancy has resulted in multiple births. I think the responsibility is to have the ability to say “no,” and that responsibility doesn’t end.
Stephen Nunn: The role of the provider is an active and interactive one. The mother should undergo a psychologic or psychiatric evaluation. Risks and benefits need to be clearly explained and explored in an unbiased atmosphere. The provider has, in my opinion, the right to put limits on their involvement, such as adhering to established guidelines, protecting the potential fetuses’ health, insisting on a mental health evaluation, and refusing to be a party, if necessary.
Austin Potenza: Our medical system has gone, in the past 50 years, from one of paternalistic physicians and caregivers who really controlled all of the major decision-making in health care to one where it’s the patient who now is the king, makes all the major decisions, and is involved in his or her care. The health care provider is there to facilitate, maybe guide, those decisions, but not to interfere in them, unless they involve illegality (ie, assisted suicide) or overriding personal ethical beliefs (ie, abortion). But the decisions are ultimately the responsibility of the patient, if the patient is competent.
The point at which the caregiver’s responsibility becomes heightened is the point at which damage is being done to the patient—or, in cases such as this, to the fetuses, and that damage is foreseeable and preventable. Short of that, the caregiver’s role is generally secondary to the patient’s when it comes to medical decision-making.
What, if any, impact do you think the scientific/medical achievement in this case—which culminated in the successful delivery of octuplets —had on the clinicians’ judgment?
Marie-Eileen Onieal: I think that this event has placed the fertility specialty in jeopardy of being regulated for the wrong reasons. I think the physician took advantage of the science available.
Randy Danielsen: The technology in this case seems to have overridden the social implications. I am sure this case will be added to many others where the rights of the individual counter the ethical obligations of the provider in an absence of legal intervention.
Rebecca Scott: The way it comes across to me is that there’s a certain kind of arrogance in doing that kind of thing. And it’s the same kind of arrogance that we had a century ago, saying, “You’re mentally retarded; you should not be having children, therefore I am sterilizing you whether you want to be sterilized or not.” It’s kind of the flip side of that attitude.
At the same time, I really have a horror of setting up a situation where individual health care providers refuse to provide appropriate care because of individual beliefs. I think if we start going down that road, we’re really asking for trouble…. Medical decision-making is rarely clear-cut. The interaction between patient and provider is so much of a negotiation, tinged with so many “shades of gray,” that I believe we really have to think very carefully about whether making decisions for patients is appropriate.
Stephen Nunn: I doubt the notoriety of an octuplet birth held any sway over the decision. In fact, it probably was a negative factor. I am aware of a professed fertility specialist who became famous—or rather infamous—for being responsible for the largest number of quad births in the nation. For various reasons, the state medical board investigated, and the doctor agreed to stop the practices that led to this.
The remarkable thing seems to be that multiple gestations survive, not that they happen. I suspect that in the coming years, we will start hearing more about various learning and other disabilities as these children enter the school system.
Austin Potenza: It’s a very relevant question, and it really goes to the heart of ethical thinking. Whose interests is the caregiver really serving? The caregiver’s, by making a medical breakthrough, or the patient’s? I certainly can’t define whether such considerations had an influence in this case, but they clearly shouldn’t….
The truth is our medical abilities are advancing at just an amazing rate, and I think it’s sometimes hard to tell the difference between doing something because we can do it and doing something because it’s the right thing to do for a particular patient in a particular circumstance. Medical ethics is fighting to catch up with the medical advances that are being made, and we always have to be thinking about these things.