CHOOSING WISELY: ENVISIONING PERINATAL HOSPICE NOTIFICATION LAWS THAT INFORM AND EMPOWER.

• Author: Flakus, Ashley

INTRODUCTION

Consider a family.

This family consists of a woman, her husband, and their two young children--a five-year-old girl and a three-year-old boy. The woman and her husband are happily married, as helplessly in love with each other as they were on the day of their wedding, and they have been trying for another baby for the last few months. When the woman finds out she is pregnant with their third child, she clutches the pregnancy test in her hand in disbelief. She waits until her husband comes home to tell him the news in person. When she finally says the words, they both cry tears of joy. It is one of the happiest moments of their lives.

At the twelve-week mark, the woman and her husband visit the doctor for a blood test and ultrasound. (1) There, the doctor informs them that their baby has a condition called Trisomy 13, or Patau Syndrome. (2) The explanation contains a frightening, overwhelming amount of medical information, but phrases echo in the woman's mind: "unlikely to live past the first month" and "incompatible with life." She and her husband go home, numb with grief, and whisper questions back and forth to each other after they put their children to bed. It seems impossible: if they carry their baby to term, what will they tell their kids? Their parents? The thought of an abortion is devastating; they have already begun talking about names and nursery colors. But to continue the pregnancy means months spent fearing a day that the woman and her husband do not think their family can bear.

While this story is fictional, many individuals and families face similar circumstances. The diagnosis of life-limiting fetal conditions such as ancncephaly, Patau Syndrome, and severe heart defects (3) can place parents in a position in which the right course of action is hard to discern--if it exists at all. While some parents may have strong convictions that will quickly determine their next steps, many need time to decide how to proceed.

Perinatal hospice refers to a cluster of medical services that some individuals choose after the diagnosis of a life-limiting fetal condition. (4) At its core, perinatal hospice involves many kinds of support--including physical, emotional, social, and spiritual--for the pregnant person, family members, and the fetus or newborn from the time of diagnosis to bereavement. (5) The American College of Obstetricians and Gynecologists and the American Academy of Nursing advocate for such programs, (6) which are expanding throughout the United States and the world. (7)

Several states have passed perinatal hospice notification laws, which differ in scope but generally require certain pregnant individuals to receive a notification about the availability of perinatal hospice services within the state. (8) Such laws address emotionally difficult matters, and unsurprisingly, they are met with a wide range of reactions. Some find these laws to be an intrusion into a sensitive domestic and medical situation, another manifestation of the same anti-abortion sentiment that has chipped away at bodily autonomy for decades. (9) Others believe laws like these provide essential information to pregnant individuals who may not otherwise learn about a meaningful service to help them through a painful time. (10)

This Note will proceed in four parts. Part I will outline the historical development of perinatal hospice as a medical practice and of perinatal hospice notification laws as a legal phenomenon. (11) Part II will identify and compare states' approaches in crafting (or not crafting) these laws, taking special note of who receives a notification and when. (12) Part III will consider the role of the government, the nature of informed consent, and possible legislative justifications under the police power in passing a perinatal hospice notification law, weighing the legitimacy of different interests and their logical connection (or not) to the laws passed. (11) Finally, Part IV will conclude that two appropriate approaches exist to facilitate meaningfully informed choice in the perinatal hospice context: notifying all eligible individuals of the care they qualify for at the time of diagnosis or deliberately passing no law on the matter at all. (14)

1. BACKGROUND AND HISTORY

   Perinatal hospice arose out of palliative and hospice care, fields which originated abroad and first took root in the United States in 1973. (15) Palliative and hospice care represent an effort to address "the total needs of the dying patients" as human beings, including their comfort, rather than solely making aggressive attempts to cure what are ultimately incurable ailments. (16) By 1982, some medical literature included the subspecialty of neonatal palliative care, (17) focusing on the needs of infants bom with conditions that would allow them to live only a short time. Then, with improvements in diagnostic technology, doctors began to detect lethal abnormalities even during gestation, and the emotional timeline for parents shifted. Where they formerly experienced the sudden shock and grief of an adverse diagnosis upon the birth of their baby, they now encountered the shock and anticipation of grief before birth. (18) The field of perinatal hospice developed in response to this new type of patient need.

   Perinatal hospice19 refers to a type of care for fetuses with life-limiting conditions, those who carry them, and their families. As one article describes it:

   The care model is a bundle of services, untethered to a hospital or medical center. Hospice nurses and social workers help families prepare for loss, coaching parents on what to say to siblings and coworkers. They take calls at 2 a.m. They recommend family therapists for couples whose relationships strain under grief. They teach mothers how to deliver painkillers to a dying infant, should the baby live long enough to go home. (20) As perinatal hospice programs have expanded throughout the United States and abroad, (21) well-respected medical groups have endorsed the practice as a valuable option for the eligible population. (22) The American College of Obstetricians and Gynecologists (ACOG) describes perinatal hospice as "one of several options along a spectrum of care, which includes pregnancy termination (abortion) and full neonatal resuscitation and treatment, that should be presented to pregnant patients faced with pregnancies complicated by life-limiting fetal conditions." (23) Similarly, the American Academy of Nursing describes this care as "an essential element of childbearing choices." (24)

   These organizations phrase their endorsements carefully to emphasize that perinatal hospice care is not the right choice for everyone. Many pregnant persons who discover that their wanted fetus will survive only hours or days outside the womb will choose to terminate the pregnancy, and others will choose the most aggressive possible treatments to prolong the life of the fetus or newborn to the fullest extent that medical technology will allow. (25) Perinatal hospice is one choice among many to which pregnant individuals should have access, not the ideal choice for all eligible patients.

   Several organizations and laws explicitly frame perinatal hospice care as an alternative to abortion. (26) This framing improperly situates abortion as the opposite of perinatal hospice, as if those are an eligible pregnant person's only choices. In reality, a pregnant person can make many choices in response to a diagnosis of a life-limiting fetal condition: to proceed with the pregnancy without intervention, to proceed with the pregnancy with a high degree of intensive intervention in attempts to lengthen fetal or neonatal life even a small amount, to get an abortion, to seek individual mental health counseling in order to cope with the shock that often comes with such a diagnosis, to enroll in a perinatal hospice program, to seek more information or a second medical opinion, or to choose some combination of these options.

   Given all these available choices, many people who receive a lifelimiting fetal diagnosis do not get an abortion and do not enter a perinatal hospice program, whether due to lack of knowledge, lack of available services, or lack of interest in doing so. The decision is not simply one or the other, and abortion may not factor into a person's choice at all. Though the benefits of perinatal hospice may coincide with some values broadly considered "pro-life" (in that abortion is not occurring), they also align with principles of reproductive choice (in that, when perinatal hospice is presented properly, it can expand the care options available to pregnant persons). (27) To reduce perinatal hospice care to merely an "alternative to abortion" unduly centers abortion as the biggest concern a pregnant person may have when grappling with an adverse diagnosis. The choices pregnant individuals make are much more nuanced than that.

2. Comparing Existing Perinatal Hospice Notification Laws

   As perinatal hospice programs have proliferated, (28) several states have passed what this Note will refer to as "perinatal hospice notification laws." These laws differ in their approaches, (29) but in general, they require certain populations to be notified at certain times about perinatal hospice care within the state. In most states that have perinatal hospice notification laws, these laws are situated within existing abortion provisions as an informed consent disclosure. (30) Other states classify perinatal hospice notification laws within the scope of public health laws without reference to abortion. (31)

   While respected medical organizations have consistently supported perinatal hospice as a treatment option, ACOG appears to disfavor perinatal hospice notification laws. Although it does not address these laws specifically, ACOG generally asserts that "[t]he intervention of legislative bodies into medical decision making is inappropriate, ill advised, and dangerous." (32)...