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FAQs
What is perinatal hospice?
Perinatal hospice 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 hospice helps them embrace whatever life their baby might have, before and after birth. Perinatal hospice 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 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 (Calhoun & Hoeldtke 2000), as well as genetic counselors, 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 parents who terminate grieve as much or more than 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). For parents who choose perinatal hospice, their responses to it are "overwhelmingly positive" (Calhoun & Hoeldtke 2000), and they report being more emotionally and spiritually prepared for their infant's death; experiencing less intense despair and sadness; and feeling "a sense of gratitude and peace surrounding the brief life of their child" (Sumner 2001).
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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