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FAQs
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 fatal 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 into the care of this new population of patients. For parents who receive a terminal 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 after birth (if the baby lives longer than a few minutes or hours). 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. 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 Web site 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 or inspired 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 is about providing a different kind of medical care, with different kinds of hope. Hospice is about providing comfort and dignity both for the person who is terminally ill and for the family and extended circle. For a baby who is expected to die, parents' original wishes and dreams for their child’s long life are dashed. But as they adjust to the reality of their baby’s impending death, 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 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, upon further testing, 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.
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)
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. 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.
Isn't perinatal hospice mostly for people who oppose abortion?
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.
When is the new book, A Gift of Time, coming out?
As soon as we can! We know that there is a need for this kind of book, now. We are working to write a truly comforting, informative, supportive book that will resonate with parents who have traveled or will travel this path. In the meantime, please see our books that may be helpful to you now.
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