When Should States Enact Perinatal Hospice Notification Laws?

In a recent Note in the Washington University Law Review, author Ashley Flakus examines when, if at all, it is appropriate for the state to require pregnant women be told about perinatal hospice. (Click here for a general overview perinatal hospice services.)

While Flakus is obviously pro-choice, she makes some valid points about abortion, perinatal hospice, and informed consent. Here I give a fairly quick summary of the four parts of her paper without value judgments about the content. Following that, I’ll point out some of the concepts on which I think she missed the mark as well as some of the points on which I agree with her. 

Part One: History of perinatal hospice and evolution of laws concerning it

Flakus explains that perinatal hospice arose out of general palliative care and hospice care fields in the early 1970s, and by the early 1980s neonatal palliative hospice was starting to get recognized as a subspecialty in the medical field. It is recognized as a legitimate medical service to both the prenatal human who has received the life-limiting diagnosis and the family members of the baby. While some organizations try to be carefully neutral about a woman’s pregnancy choices when a fetal diagnosis has been given, positioning perinatal hospice and abortion as only two of many choices a woman has, other organizations choose to frame perinatal hospice care as directly opposite the choice of abortion. In reality, there is a spectrum of choices available to women who have received a fetal diagnosis, and acting like there are only two choices and pitting them against each other detracts from the nuance of the situation. 

Part Two: Comparing and contrasting state laws about perinatal hospice

Flakus lays out the four ways States currently approach laws about notifying women of perinatal hospice services. She assesses what events trigger notification and whether notification is overinclusive, underinclusive, both, or neither.

She categorizes approaches by the triggering event: diagnosis-triggered approaches are responses to the parent(s) receiving a life-limiting  fetal diagnosis, and abortion-triggered approaches are responses when the pregnant woman is seeking an abortion. Flakus measures inclusivity by how well the laws reach the target population (women who have received a life-limiting fetal diagnosis). Overinclusive laws result in notifying some women who have not received a fetal diagnosis. Underinclusive laws result in failing to notify some women who have received a fetal diagnosis. Flakus gives examples of states which have one or the other of these approaches.

The first approach is abortion-triggered; it requires notification be given to any woman seeking an abortion who has also received a fetal diagnosis. Flakus categorizes such laws as underinclusive, since they don’t require notifying women who received a fetal diagnosis but who are not seeking abortion of perinatal hospice services. She listed five states which have this notification trigger: AZ, AR, IN, MN, and OK.

The second approach is also abortion-triggered; it requires notification be given to all women seeking abortion. Flakus categorizes this approach as both over- and underinclusive. It is underinclusive because, just like the first approach, women who got a fetal diagnosis but are not seeking abortion would not have to be notified. At the same time the approach is overinclusive because many women seeking abortion (and thus required to be notified) do not have a fetal diagnosis. Two states are listed as having this type of approach: KS and WI.

The third approach is diagnosis-triggered: notifying all women who receive a fetal diagnosis. This approach is neither over- or underinclusive. In other words, it’s just right. It works to alert exactly the population of women who could make use of perinatal hospice services. Two states have this diagnosis-triggered approach: IN and NE. 

[Note: I am unclear on whether Indiana’s laws would make it so that a woman who received a fetal diagnosis and sought an abortion would actually get two notifications about perinatal hospice — once at the time of diagnosis, and once again at the time of abortion.]

The majority of states take the fourth and final approach: they have no laws pertaining to notification of perinatal hospice services. While a valid option, nonregulation is of course categorized as underinclusive, since no woman eligible for those services is required to be informed. This approach allows states to get out of the matter of medical decisions entirely while relying on internal regulation within the medical community and legal redress from patients via tort law. However, it also allows discrimination from doctors toward patients, with no set path for legal redress.

Part Three: The state’s role in providing information in the spirit of informed consent

The third section of the Note is Flakus’ lengthiest, with time devoted to examining what informed consent is and the various interests states may have in requiring the provision of information about perinatal hospice services. Flakus analyzes these state interests and assesses which interests are legitimate and should be used to create these laws versus which interests are invalid and should not be used.

What is informed consent in the medical context? “Generally, informed consent consists of providing a patient with the material information necessary to make a particular decision.” In 1972, the Canterbury v. Spence case defined”material”: “[a] risk is thus material when a reasonable person, in what the physician knows or should know to be the patient’s position, would be likely to attach significance to the risk or cluster of risks in deciding where or not to forego the proposed therapy.”

She outlines four reasons states might give for requiring perinatal hospice service notification as a part of informed consent at some point in pregnancy:

1. “Protecting life and improving quality of life”

• This is a legitimate state interest for passing laws.
• Perinatal hospice may not extend an infant’s life, but it can improve the quality of the infant’s life and the quality of life of the parents and family members.
• This legitimate interest may not be the true driving force of a notification law if the notification is abortion-triggered instead of diagnosis-triggered.

2. “Impeding abortion access”

• Abortion before fetal viability is a constitutional right, and a state has no legitimate interest in impeding such a right.
• Abortion-triggered notification laws are almost certainly intended to impede access, even if it’s not explicitly stated.
• This reason is “impermissibly coercing individuals to not get an abortion.”

3. “Promoting best medical practices”

• This is a legitimate state interest for the sake of protecting public health. 
• States regulating notification of perinatal hospice but not adolescent or general hospice are likely motivated to impede abortion access, not to promote best medical practices.
• Alternatively, perinatal hospice may be medically unique from other hospice services in a manner which justifies regulating notification of these services but not other types of hospice services, but if these reasons are not mentioned in the making of the law, it is unlikely this is the true justification of the law.

4. “Protecting individuals from emotional distress”

• Protecting anyone from the possible emotional distress or regret of their choice to act upon a constitutional right is not a legitimate interest of the state. 
• Laws or torts protecting people from undue emotional distress or “intentional infliction of emotional harm” require two parties: the person inflicting the harm and the person emotionally distressed by it. “Protecting individuals from accidentally inflicting emotional distress upon themselves by exercising their own rights in a perfectly legal way which they may later regret is not comparable.”
• Abortion-triggered notification laws based on this reasoning are a type of “sexist paternalism” where only women making “high-pressure, potentially emotional medical decisions” are regulated in their decision-making so heavily (compared to men).

Part Four: Conclusion

Flakus asserts that the two best approaches to notification laws for perinatal hospice services are either diagnosis-triggered notifications or no regulations at all. Abortion-triggered notification laws miss the mark for a variety of reasons, most notable being “failing to deliver the intended benefits” of such a law. 

A diagnosis-triggered notification is in line with legitimate state interest in promoting best medical practices and improving quality of life, while avoiding overreach of the state into women’s decisions to exercise their constitutional rights. Diagnosis-triggered notification laws also have the advantage of being in line with the concept of informed consent by providing information at the beginning of a woman’s decision-making process. 

No regulation on notification of perinatal hospice services is a valid option as well. This approach completely sidesteps the issue of possible overreach into constitutionally-protected medical decisions available to women and avoids “misogynistic restrictions on women’s decision-making, infringement upon constitutional rights, and unnecessary governmental red tape.”

Where I Agree

I think Flakus makes some very good points throughout the Note, especially with respect to the intent of perinatal hospice notification laws. I am going to outline several specific areas where I think pro-life people can have common ground with this pro-choice author.

• Perinatal hospice is not the opposite of abortion, but abortion-triggered notification laws set up these two options as opposites.
• Abortion-triggered notification laws set up perinatal hospice as an alternative to abortion, which sets up abortion as the biggest concern a pregnant woman might have when learning about the diagnosis. This is not a fair assumption.
• Abortion-triggered notification laws are underinclusive of the population of women who could make use of the knowledge or perinatal hospice.
• The possible emotional consequences one may inflict upon oneself by acting out a constitutional right should not be a driving force in making a law.
• The state has a legitimate interest in incentivizing or requiring behavior or actions to try to improve the lives of the constituents, or to de-incentivize or ban behavior which harms the lives of its constituents.
• A state does not have legitimate interest in impeding residents’ exercise of their constitutional rights.
• If perinatal hospice laws can be triggered when a life-limiting fetal diagnosis is given, what about pediatric palliative care laws? Why are there none of those? Is it because abortion is not involved?
• By the time most women show up to the clinic or hospital to abort, they are set in their decision and are unlikely to change their minds. (Note: Both pro-choice and pro-life evidence shows this. Undecided women are the ones most likely to be influenced either way depending on the information they are given and the support they have. The more information given sooner in the decision-making period, the better.)

Where I Disagree

Flakus makes many of the common pro-choice assumptions I see from the average pro-choice person, which did disappoint me a bit since I expected more from a law student. She made some large leaps to a few conclusions that she did not provide adequate evidence to support. 

Her greatest assumptions are that fetuses lack personhood and rights until a later point in pregnancy and that abortion is a constitutional right. 

She actually used a Slate article to show that Americans have a wide range of views on when life begins. Unfortunately, she spends no time using valid scientific sources of information regarding when a human organism’s life begins, nor does she spend any time justifying why fetal personhood should not start until viability. She also ignores the fact that many people, pro-choice legal experts and judges included, think Roe v. Wade was a terrible decision, and that there are very good legal arguments against the idea that abortion is a constitutional right protected under the 14th Amendment. 

She also argues that abortion-triggered regulations couched in “informed consent” language are paternalistic and misogynistic because they treat women as helpless and/or unable to make good decisions on their own. She states there are no comparable laws for requiring info in such high-pressure, potentially emotional situations for men. But the implied assumption here, as it is everywhere in her article, is that abortion does not kill. If we acknowledge that abortion kills humans, what possible comparable decision do men have? One does not exist. Pregnancy is unique to women, just as the ability to legally kill one’s offspring is unique to us, too. She further argues that abortion-triggered notification laws are coercion by the state to prevent women from exercising their constitutional rights. 

When championing perinatal hospice notification laws, we pro-lifers need to ask: what is the primary point of the law? Are we trying to reduce abortions in an at-risk population or make all eligible women aware of all their options? A diagnosis-triggered law would be a good legal step to accomplishing both of those goals. Diagnosis-triggered laws give women the info up front, in contrast with abortion-triggered laws which give information last-minute, often after women have already decided. Upfront info making her aware of perinatal hospice services may prevent her from ever deciding to abort to begin with. Diagnosis-triggered laws are also preferable to no regulation. Doctors make judgment calls, and some doctors would likely withhold such information from eligible patients based on socioeconomic, ethnic, religious, or other biases. Making notification a legal requirement is a step to ensure women are either informed or have legal redress if not.