Frequently asked questions about perinatal hospice and palliative care
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 team approach that includes 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, therapists, and traditional hospice professionals. 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 our list of perinatal hospice programs, or ask your caregivers. (If your caregivers don't know about perinatal hospice, print the pages from this website and help inform them!)
What if there isn't a program nearby?
You do not need a program in order to take a perinatal hospice approach with your pregnancy. All you need to do is commit to creating a loving experience for yourself and your baby. You will need to make some decisions and advocate for your needs, which can be challenging when you are overwhelmed with sadness. But by being proactive, you may be able to enlist the support of your doctor, midwife, or nurse; having just one health care practitioner who is willing to coordinate your care can be immeasurably comforting and helpful. Even without that, you can coordinate your own care, and 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 our list of resources 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 born alive, for the baby to be held, 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.
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 consider these pregnancies pointless and "medically futile," and they question why anyone would decline to abort and move on. For some parents, the prospect of intentionally ending their child's life is unthinkable. Others may consider it, unsure of which path would be the more bearable 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 presumption 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 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 et al, 2005) And a recent followup study found that 14 months after the termination, 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. In contrast, 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).
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 also carries physical risks, which increase as a pregnancy progresses. The mortality risks of abortion after 21 weeks are slightly greater than the normal risks of pregnancy and childbirth. (Bartlett et al 2004, CDC) 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 are the termination options?
Depending
on the stage of pregnancy, the options are surgical abortion or premature
induction of labor. Many conditions are diagnosed at a routine ultrasound around 20
weeks. In the second trimester, through about 24 weeks of pregnancy, the most
common method is dilation and evacuation (D&E), in which surgical
instruments are used to dismember and remove the baby in pieces. 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 has been 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
baby’s heart first. (Boston Globe, Medscape)
Although some providers tell parents the injection prevents 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 injections for euthanizing animals to be painful and "inhumane," and Amnesty International objects to using potassium chloride for executions because it can cause "excruciating pain.") According to the American Society of Anesthesiologists, anesthesia given to the mother provides "no to little" pain relief for the baby. (Ellison) Terminating by premature induction in a hospital 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 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.
Perinatal hospice appeals to people all along the spectrum of opinion on abortion. People who are pro-life understand it as a way to honor a baby whose life has intrinsic value, no matter how brief or "imperfect." People who are pro-choice can understand it as a rational, healing, affirming choice that should be offered to parents as an alternative to terminating the pregnancy. Perinatal hospice transcends the abortion debate.
How many people actually do this?
No national or international statistics are available. One early report, conducted before the spread of perinatal hospice and palliative care, estimated that about 20 percent of parents chose to continue their pregnancies—even in the absence of support. (Calhoun & Hoeldtke 2000) But the percentages increase dramatically when parents are offered perinatal hospice support and reassured that they will not be abandoned by their caregivers. In one British study, when parents were offered perinatal hospice as an option, 40 percent chose to continue. (Breeze et al, 2007) In a U.S. study, when parents were given the option of perinatal hospice, the number rose to 75 percent. (D'Almeida et al, 2006) And in another U.S. study, the number who chose perinatal hospice was 85 percent. (Calhoun 2003) Even if the overall numbers are small, these parents need and deserve best-practices care.
How can I start a perinatal hospice/palliative care program?
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 Perinatal Palliative Care Toolkit from Gundersen Lutheran Medical Foundation. See also the new 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.
Where can I find the new book, A Gift of Time?
A Gift of Time was released in January 2011 and is available from Johns Hopkins University Press, Amazon.com, Amazon.co.uk and other booksellers. It is available in hardcover, paperback, and as an e-book. In addition, please see our other books that may be helpful to you.
