What is perinatal hospice?
Perinatal hospice and palliative care is an innovative and compassionate model of support that can be offered to parents who find out during pregnancy that their baby has a life-limiting condition. As prenatal testing continues to advance, more families are finding themselves in this heartbreaking situation. Perinatal (perinatal means around the time of birth) hospice incorporates the philosophy and expertise of hospice and palliative care into the care of this new population of patients. For parents who receive a life-limiting prenatal diagnosis and wish to continue their pregnancies, perinatal palliative care helps them embrace whatever life their baby might have, before and after birth.
This support begins at the time of diagnosis, not just after the baby is born. It can be thought of as "hospice in the womb" (including birth planning and preliminary medical decision-making before the baby is born) as well as more traditional hospice and palliative care at home after birth (if the baby lives longer than a few minutes or hours). Palliative care can also include medical treatments intended to improve the baby's life. This approach supports families through the rest of the pregnancy, through decision-making before and after birth, and through their grief. Perinatal hospice also enables families to make meaningful plans for the baby's life, birth, and death, honoring the baby as well as the baby's family.
Perinatal hospice is not a place. It is more a frame of mind. It can easily be incorporated into standard pregnancy and birth care. Ideally, it is a comprehensive and multidisciplinary team approach that can include obstetricians, perinatologists, labor & delivery nurses, neonatologists, NICU staff, chaplains/pastors, and social workers (Hoeldtke & Calhoun 2001, Calhoun et al 2003), as well as genetic counselors, midwives, traditional hospice professionals, and others. Perinatal hospice is a beautiful and practical response to one of the most heartbreaking challenges of prenatal testing.
Where can parents find perinatal hospice support?
See the list of perinatal hospice programs, or ask your caregivers. (If your caregivers don't know about perinatal hospice, show them this website and help inform them!)
What if there isn't a program nearby?
Even without a formal program, you can still take a perinatal hospice approach with your pregnancy. You will need to make decisions and advocate for the needs of you and your baby, which can be challenging when you are overwhelmed with sadness. You might need to educate your health care team about perinatal hospice. Ideally they will be supportive and willing to learn; sometimes it's necessary to change providers to find someone who is more open to helping you. Even if you have to take the lead, you can be energized by knowing that you are parenting your baby in ways that will honor this child as well as your role as parents. See the resources for parents for many links to resources about birth planning and ways to celebrate your baby. (For one family's story of traveling this path without a formal program, see Waiting with Gabriel.) Perinatal hospice isn't so much a program as a frame of mind.
Doesn't hospice mean giving up and losing hope?
No! Hospice and palliative care are about providing a different kind of medical care, with different kinds of hope. This approach is about providing comfort and dignity both for the person who is terminally ill and for the family and extended circle. Hospice can be a frightening word, but it doesn't mean giving up on your baby. A core principle of hospice and palliative care is not to hasten death. (World Health Organization) Palliative care can be provided along with medical intervention to improve the baby's life, sometimes even including surgery, if the intervention would be of benefit and not unnecessarily burdensome to the baby. Babies with the same condition can vary greatly in their ability to sustain life. A few babies surprise everyone with their strength and are able to "graduate" from end-of-life care and live longer than expected. Hospice and palliative care follow the baby's lead, honoring the baby's life.
For a baby who is expected to die, parents' original wishes and dreams for their child’s long life are shattered. But their hopes can change direction: for the baby to be treated with dignity, for the baby to be protected until death comes naturally, for the baby's life to be filled with love. Parents who have chosen perinatal hospice have said that this kind of care helped their hopes be fulfilled.
Which conditions are appropriate for perinatal hospice?
Parents choose perinatal hospice and palliative care for a wide range of life-limiting conditions including anencephaly, Trisomy 13, Trisomy 18, Potter's Syndrome, severe heart defects, congenital diaphragmatic hernia, and others.
What if the diagnosis is wrong?
Prenatal diagnosis is not perfect. At birth, some babies' conditions are less or more severe than predicted. Sometimes the diagnosis was ambiguous all along. On rare occasions a diagnosis was wrong and the baby is perfectly healthy. Perinatal hospice and palliative care encompasses all these scenarios. A baby might be born stronger than expected and seeming to say that she's able to fight to stay awhile longer. In this case, doctors may be able to offer a better prognosis with short-term aggressive medical intervention, and parents may decide that this is warranted. Another baby might be born weaker and sicker than expected, seeming to say more urgently that all he needs is comfort and love, and parents can change their plans accordingly. Decisions and plans can always be adjusted as the baby makes his or her needs known. You can let your baby lead you.
Why would anyone continue a pregnancy like this?
Some question why anyone would continue a pregnancy that some consider "medically futile." For some parents, intentionally ending their child's life is unthinkable. Others may consider it, unsure of which path would be the more bearable or compassionate choice. Fundamentally, choosing to continue is a parenting decision that honors the baby as well as the parents. It allows you to parent your baby as long as possible and to protect your child for as long as he or she is able to live. Ultimately, it allows you to give your baby—and yourself—the full measure of your baby's life and the gift of a peaceful, natural goodbye. Continuing the pregnancy is not about passively waiting for death. It is about actively embracing the brief, shining moment of this little life.
Isn't continuing the pregnancy harmful to the mother's mental health?
In an era of evidence-based medicine, it's important to note that there is no research to support the popular assumption that terminating the pregnancy is easier on the mother psychologically. In fact, research to date suggests the opposite. Research suggests that women who terminate for fetal anomalies experience grief as intense as that of parents experiencing a spontaneous death of a baby (Zeanah 1993) and that aborting a wanted baby with birth defects can be a "traumatic event ... which entails the risk of severe and complicated grieving." (Kersting 2004) One long-term study found that "a substantial number ... showed pathological scores for post-traumatic stress." (Korenromp 2005) A followup study found that 14 months after terminating for fetal anomalies, nearly 17 percent of women were diagnosed with a psychiatric disorder such as post-traumatic stress, anxiety, or depression. (Kersting 2009) Termination is not a shortcut through grief. Although this field is relatively new and more research is needed—for example, no studies yet have directly compared parents who terminated with those who continued—we do know something about those who continue with good support from their caregivers. Parental responses to perinatal hospice are "overwhelmingly positive" (Calhoun & Hoeldtke 2000), and parents report being emotionally and spiritually prepared for their infant's death and feeling "a sense of gratitude and peace surrounding the brief life of their child" (Sumner 2001). Parents who participated in A Gift of Time also overwhelmingly expressed gratitude and peace regarding their decision to continue.
What about the mother's physical health?
Many life-limiting conditions in the baby do not pose any greater physical risk to you than the normal risks of pregnancy. It's important to note that abortion itself poses maternal physical risks, which increase as a pregnancy progresses. Many fetal anomalies are diagnosed at an ultrasound around 20 weeks of pregnancy. The maternal mortality risk of abortion after 21 weeks is greater than the normal risk of pregnancy and childbirth. (Sources: "The risk of death associated with abortion increases with the length of pregnancy ...[to] one per 11,000 at 21 or more weeks," according to the Guttmacher Institute. That translates to more than 9 maternal deaths per 100,000 abortions at 21 weeks or later, compared with about 7.5 maternal deaths per 100,000 live births, according to the Centers for Disease Control and Prevention.)
If there are possible maternal health effects related to the baby’s condition, physicians are trained to watch for complications and treat them if they do arise. It is rare for a pregnancy to pose a direct threat to a woman’s life. In those cases, maternal-fetal medicine specialists are trained to try to save both patients. If a threat to the mother is so severe that the baby must be delivered too prematurely to survive, the mother can receive urgent medical care while the baby can still be provided with comfort and treated with respect. In small studies of mothers who continued their pregnancies with babies who had lethal conditions, there were no maternal physical complications. (Calhoun et al 2003, D'Almeida et al 2006)
Future pregnancies may be another consideration. Multiple studies suggest that termination is associated with "significantly increased risks" of premature birth and low birthweight in subsequent pregnancies, perhaps because of cervical damage and scarring, according to a review published in the British Journal of Obstetrics and Gynecology. (Shah 2009)
Won't the baby suffer?
A major concern for most parents is whether the baby will suffer during pregnancy or after birth. Many life-limiting conditions are not inherently uncomfortable for the baby. (Read A Gift of Time for parents' poignant descriptions of their baby's peaceful life and death.) If pain is a possibility, it can be treated aggressively and effectively, and pain can be avoided altogether by careful decisions about medical interventions that you want or don’t want for your baby. A terminally ill baby does not have to be rushed to intensive care or surgery or a ventilator. You can even decline minor routine procedures such as standard newborn shots and tests that would cause unnecessary discomfort. Instead you can provide palliative care, which has become a medical specialty in its own right (see the World Health Organization definition of palliative care). You can envelop your baby in comfort and love.
What happens after the baby is born?
Every baby’s story is individual, of course. Most perinatal hospice babies stay with their parents in their hospital room after birth, being tenderly held and bathed and loved until the baby’s life comes to a gentle and natural end. Some parents choose to make their baby’s life a joyful time, while other parents prefer to keep this time quieter and more peaceful. Some invite extended family and friends to meet the baby, while others prefer the time after birth to be more intimate. Sometimes further medical evaluation is needed to confirm a diagnosis or determine whether medical intervention would be beneficial for the baby. If the baby has died before birth, parents may spend as much time with their baby as they wish. Many choose to take photographs and collect footprints and other keepsakes, with the assistance of hospital staff. (Helping families create memories during this fleeting time is considered best-practices standard of care in U.S. hospitals.) For babies who live longer, parents may care for their baby at home, with the support of hospice and palliative care professionals if needed. For many stories of parents' experiences saying hello and goodbye, see A Gift of Time.
How late can a pregnancy be terminated?
This varies by locale and provider. In the United States, under the U.S. Supreme Court's Roe v. Wade ruling, states are allowed (but not required) to restrict abortion after a developing baby could survive outside the womb. According to the Guttmacher Institute, 41 states have enacted time limits, generally after 20–24 weeks of pregnancy or viability, while nine states and the District of Columbia have no time limits. Even if states adopt time limits, the Supreme Court requires exceptions for preserving the life or health of the mother, defining health as "all factors—physical, emotional, psychological, familial, and the woman's age—relevant to the well-being of the patient." (Doe v. Bolton)
What are the termination options?
Depending on the stage of pregnancy and provider preferences, the options are surgical abortion or premature induction of labor. Many conditions are diagnosed at a routine ultrasound at around 20 weeks of pregnancy. In the second trimester, through about 24 weeks of pregnancy, the most common method in the U.S. is dilation and evacuation (D&E), in which surgical instruments are used to remove the developing baby in pieces. (WebMD) Another procedure used in the mid-second trimester or in the third trimester is dilation and extraction (D&X), also called intact D&E or “partial birth” abortion, in which the baby is removed mostly intact except for the head. (Haskell) This method is banned in the U.S. for use on a fetus who is still alive, so some clinics that still perform this procedure or other late-term variations administer a lethal injection of potassium chloride or an off-label overdose of digoxin into the developing baby’s heart first. (Society of Family Planning, Contraception) Although some providers tell parents the purpose of the injection is to prevent the baby from feeling pain during the removal process, whether the injection itself causes pain has not been studied. (The Humane Society of the United States considers the use of potassium chloride or intracardiac heartstick injections for euthanizing animals to be painful and "inhumane," and Amnesty International objects to using potassium chloride for executions because it causes "excruciating pain.") According to the American Society of Anesthesiologists, anesthesia given to a mother provides "no to little" pain relief for her developing baby. Alternatively, some providers cut the umbilical cord in utero to cause death by asphyxiation and blood loss before beginning the removal process. (The Humane Society also considers exsanguination to be inhumane for euthanizing animals.)
Terminating by premature induction in a hospital—not an outpatient abortion clinic—is much closer to a normal birth experience for the mother, although the process can be lengthy and cause complications because the mother's body is not ready to go into labor. Some providers also administer a lethal injection before an induction termination, to avoid legal and ethical obligations associated with a live birth or in some cases to circumvent hospital ethics policies or state laws regarding late-term abortion.
For parents who are concerned about the baby's potential suffering and about treating the baby with dignity, details about the injection and procedures to remove the baby's body can be disturbing but important to their decision-making.
Many programs have started with the inspiration of one person—perhaps a caregiver who has seen firsthand the need for this kind of support, or perhaps a parent who lived the experience and wants to ensure that other parents don't walk this path alone. Some programs are based in hospitals or clinics, some are hospice-based, and a few are faith-based or independent. Many
resources and journal articles are available; see the Resources for caregivers
page on this website. One professional how-to resource is the Blueprint for a Perinatal
Palliative Care Program Toolkit from Gundersen Health System's Resolve Through Sharing/Bereavement Services, which also has an annual training workshop. See also the framework for perinatal palliative care published by the British Association of Perinatal Medicine and its accompanying report. Some
institutions have found it helpful to introduce the idea—or announce a new
program—with a grand rounds or conference keynote. (Click here for a list of
Amy Kuebelbeck's presentations.) If you are a caregiver or perinatal
hospice advocate interested in networking and sharing information, you also are
welcome to join the perinatal hospice e-mail list. Feel free also to follow perinatal hospice and palliative care news on Facebook.
Where can I find the book A Gift of Time?