Here at nurse and lawyer, the ping-pong post will be a regular feature. These posts will feature discussion between nurse and lawyer using the news as a jumping0ff point.
The recent octuplets case raises several issues in medical ethics, and the extreme nature of this particular case raises questions about when/if there is a role for the law in such situations. Although we don’t know many details about the specific situation, there are issues of law and bioethics begging to be debated! We’re discussing the case in the framework of some basic ethical issues as a jumping-off point.
Nurse: The family which now includes 14 children is using an enormous amount of resources, including welfare (financial support) and healthcare and education resources. No one likes to talk about financial cost when human life is involved, but it’s really unavoidable. Because the birth of octuplets was the product not of natural conception but of a medical procedure, it becomes a question of whether those resources are being distributed in a way that is just. Are families and children who were not the outcome of medical interventions more deserving of resources? Should procedures that stretch resources, like IVF, be regulated with an eye towards resource utilization? Distributive justice also comes up in issues like organ transplant.
Lawyer: Unlike organ donation, welfare/healthcare/education is not a zero-sum game. We hand out more if more is needed, taking our loans and raising taxes to pay for it – there’s kind of a “we’ll deal with it later” attitude. It’s good that we can do this, because immediate needs get addressed no matter what the resources, but it also means that needs can be created without being as mindful of the potential consequences. (Would people be less likely to take the health risks of smoking seriously if lung transplants were fairly simple and we had an endless supply of lungs, for free?) And it’s not just we’re dealing with here, but our already overtaxed healthcare and public education systems. Adding eight students to a kindergarten class or caring for eight premies in a NICU is no small matter.
I say this not to shame any particular individual, but to raise questions about protecting our resources. It doesn’t seem like anybody did this on purpose, so how was it allowed to happen? We’re not even talking about limiting the things that people choose to do (if people want to have fourteen kids, and set out to do it themselves, they are allowed,)so much as limiting the possibility for such costly accidents. Which is much more palatable in terms of individual liberties.
Nurse: Ideally, the doctor/patient relationship is private, some might even say sacred, and not open to the prying eyes of anyone, including the government. Certainly HIPAA has had a lot to do with how this is approached. By this standard, the law cannot intervene in the decision between doctor and patient to perform IVF, or how to perform it, or when it is and is not appropriate.
Lawyer: This certainly isn’t entirely respected in, say, assisted suicide, where politicians get right in the middle of those conversations. Same with abortion.
Nurse: We must ask, then, is IVF a medical treatment that treats a condition (i.e. infertility)? Does that change if the patient already has children? Is there a line there? We react very differently to a woman with six children having IVF than we would to a woman with no other children or with one child.
Lawyer: It seems like it would be pretty much impossible to actually draw a line. (IVF is a medical treatment for women who have four or fewer children, but not in other cases? The number would pretty much have to be arbitrary, because what constitutes a reasonable/safe/responsible number of children varies so much according to circumstances.)
Nurse: Does there need to be psychological and/or social examination of candidates for IVF? I’m sure there are standards of care that require at least cursory exploration of a patient’s understanding of the procedure and its potential outcomes. This is part of basic informed consent!
Lawyer: There are laws in many states that require counseling for an abortion. According to the Guttmacher Institute, “33 states require that women receive counseling before an abortion is performed: 23 of these states detail the information a woman must be given; 10 states have abortion-specific requirements generally following the established principles of informed consent. ” There are guidelines for counseling with an HIV test, but not legal requirements, to my knowledge. In some states, the health authorities are actually required to distribute specific written materials to women seeking abortions. Could similar requirements for IVF – more stringent than a generic informed consent requirement – prevent the accidental birth of “extreme multiples”?
Nurse:Ms. Suleman has claimed she did not know she could be carrying multiples—and this was not her first IVF pregnancy. She was either lying, or did not have enough understanding to consent to the procedure either time. Is she, or is the physician, legally or ethically wrong?
Lawyer: There is a third possibility — that the clinician involved was negligent in explaining the procedure and its possible and likely outcomes to her. In this case, there actually might be some legal remedy.
Nurse: It’s tricky! She would have had to sign a document indicating her understanding and consent, but that consent needs to be witnessed and the physician should not accept it if he/she feels that the patient has no understanding. Of course, “sign here!” “OK!” happens all the time, and once the signature is on the dotted line, it’s harder to challenge, no?
Lawyer: Yes, but a signature on a waiver that is really quite obscure and packed with fine print isn’t likely to be upheld by a court. That’s part of why we’ve been seeing a lot of waivers and warnings that say things like “Serious injury or death could occur!” on things that seem relatively benign – it needs to be effective as a warning, in addition to a contract, to have value. So if the form she signed was in legalese and medicalese, and written in 10-point font, there may be some wiggle room.
Nurse: Allowing a woman to carry eight fetuses is dangerous to the mother and to all of the fetuses. Of course, IVF is very individual. The number of embryos implanted and the number which “take” can vary widely. Eight is outside of the normal practice. Does that make it wrong? Would it be wrong in a patient when previous attempts at IVF with fewer embryos had failed?
Lawyer: While we clearly can’t regulate how many children someone could have (hello, 14th amendment!) I think we could, and probably should, regulate how many fetuses can be implanted at once. I don’t know who would regulate that – the FDA? Perhaps there could be a limit, with an exception for women with a history of unsuccessful implantation. Ms. Suleman had a history of successful implantation, with four single births and a set of twins, all through IVF, never with more than six implanted at once . Such a regulation would likely have prevented her situation without preventing a mother who had tried unsuccessfully with fewer embryos from exploring further solutions to infertility.
Nurse: There is not a universal tool or practice for determining a patient’s understanding of a procedure. There are screening questions and health literacy assessments, but no universal practice that really evaluates understanding. This is not IVF-specific; any invasive procedure requires informed consent. Some institutions use “teach-back” technique requiring the patient to explain the procedure back in their own words before signing the consent document. If a patient cannot do this, do they have the autonomy to make the medical decisions?
Lawyer: I can certainly envision situations in which a procedure is so complicated, or relies on an understanding of how systems function in the body to a degree that a patient with no medical training and/or limited intelligence might not be able to understand it. Does that mean that the patient shouldn’t have the treatment? I wouldn’t want to start down that slope. (Are you smart enough to understand, and thus receive, this treatment?) On the other hand, if the patient is required only to repeat back the possible and likely outcomes (I understand that I could have anywhere from zero to eight fetuses in my womb as a result of this procedure, that carrying more than four at my age could pose a serious health hazard, etc, etc.) then the responsibility is firmly on the patient again.
Nurse: Should selective reduction be mandated in cases of great risk? This is, of course, a very uncomfortable question and I think you’d be hard-pressed to find someone who would say yes, but why not? A woman who is pregnant with octuplets due to IVF is at a very high risk for health problems or even death, as are eight fetuses. She is also likely to consume enormous amounts of healthcare resources. We have the ability to reduce that risk substantially. (I am not advocating this as a policy—just exploring the idea!) The objections to selective reduction are generally similar to those to abortion, although it’s perhaps complicated by the “playing god” character of IVF.
Lawyer: I think the real question there is, at what point does it become a health decision about other beings (fetuses) who also have rights? Mandating selective reduction would be the state saying that it has the duty to protect those fetuses – which leaves you in quite a pickle, since the means of protecting them include destroying some of the very things you’ve just claimed have the right to protection. Are you dizzy yet?
Nurse: While there are standards in medical ethics, they are rarely codified in law. There will always be practitioners who will be willing to push the envelope in ethics—there isn’t a way to hold them legally accountable for these questionable actions. Should there be?
Lawyer: Even if there should be – and frankly, I’m not sure they should, since doctors are much better equipped than politicians to make these sorts of decisions, I’m not sure there can be.Many of these things are impossible to make laws about, either because it’s really too paternalistic to succeed under our constitution (which values personal liberty so highly) or because the issues vary too much from case to case to make any kind of policy that would be effective. Maybe it’s more of an issue for state medical boards and ethics committees?
Nurse: as much as we hate to say it, healthcare providers may “judge” patients morally, and this can disrupt the quality of care. As all involved are human, it seems this in inevitable to some degree. Will this woman and these children receive sub-par care? Will they be subject to the same kind of discrimination that happens to others who are financially poorly off?
Lawyer: Purely as a thought experiment, I launched myself down this path: we can’t legally limit the number of children. But what if we limited how much help you could get from things like welfare, food stamps, and medicaid? Obviously, the people who would suffer fastest and most from that would be the poor children. But if the mother is not able to care for them with her own resources and whatever is designated as her reasonable share of public resources, she is likely to become a negligent parent — I don’t know what the rules are, but at a certain point, wouldn’t the state remove the children from her home, if she demonstrates an inability to care for them, be that psychologically or financially? Let some poor couple who would otherwise undergo IVF and accidentally have quintuplets take charge of a baby or two. Okay, that last part was purely whimsical. I’m just carrying the possible outcomes of something like this to their logical extremes to see where they get us.
Nurse: I think you found the main issue with that, which is that the victims would be the children. If we knew there was a child protective service that was swift and efficient, that would be one thing—but there isn’t!
Lawyer: I think this blog post is too long. We’d better stop.
Nurse: Yes, to prevent eye strain for our readers.