PERINATAL HOSPICE & PALLIATIVE CARE

A birth and parenting plan is a way of conveying your wishes for your baby’s birth and for the care of your baby and you. It can include preferences for labor and birth, such as pain relief for you, and goals for after your baby’s birth, such as ways to create memories together and include family and friends. You can also integrate your requests for your baby’s medical care, outlining your preliminary decisions regarding evaluations and testing, medical intervention, and palliative care.

 

The process of collaborating with your caregivers and putting your requests in writing can ensure that your wishes are clearly communicated and give you a sense of control in a situation in which so many things may feel out of your control. Although it may seem profoundly sad to write a birth plan for a birth that is expected to end in death, you may also see it as a way of parenting your baby and choreographing the extraordinarily precious time surrounding your baby's entrance into the world.

Birth plans sometimes have a negative reputation among medical professionals. But especially for perinatal hospice deliveries, a birth plan can also benefit your care team in important ways. A birth plan offers a format for discussion and education about the birth process (which doesn't always unfold according to plan) and your baby's condition. It ensures that all parties have similar information. A written document gives all of you a map to follow together to make your time with your baby as close to what you are envisioning as possible. It is essential to work in partnership with your caregivers to confirm that your plan is workable, to revise it if necessary, and to ensure that any special arrangements can be made. Also, be concise; brevity makes your birth plan easier for busy medical professionals to read — and to follow.

Your birth and care plan can be as unique as your baby is, but most plans need to address some similar topics. A valuable way to start is to state your overriding wishes for your baby's life. For example, one family’s statement was, “Our overriding wish is that our son’s brief life be free of pain and filled with love.” This mission statement helps you and your caregivers keep your goals in mind, even if you need to accommodate unexpected detours during your labor or in your baby’s condition.

A perinatal hospice/palliative care birth plan often includes:

Essential information

• Your baby's name (if you have already chosen one)

• The parents' names

• Contact numbers for your obstetrician, pediatrician, clergyperson, or other key caregivers

• A brief summary of your pregnancy and your baby's diagnosis

Wishes for labor and delivery

• Caesarean birth vs. vaginal birth

• Fetal heart monitoring during labor

• Comfort measures and pain relief for the mother

• Cutting the umbilical cord

• Support people you wish to be present

Wishes for your time with your baby

• ​Family and friends

• Other siblings

• Photographs and video recording

• Keepsakes such as footprints, handprints, locks of hair, crib card, ID bands

• Bathing your baby

• Spiritual rituals

• Being with your baby during and after death

Care preferences

• ​Essential newborn care such as warmth, comfort, and feeding

• Delaying routine procedures or providing them while your baby is in a parent's arms

• Medications and pain relief for baby (if needed)

• Additional testing (if needed)

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Plans for if your baby lives

• Taking your baby home 

• Special care and medical intervention tailored to your baby's condition

• Hospice assistance at home (if needed)

 

Plans for if your baby dies

• Information about the dying process and ensuring that your baby is comfortable

• Keeping your baby with you if your baby dies in the hospital

• Information about whom to notify if your baby dies at home

• Autopsy or other testing (if needed or desired)

• After-death care for the baby's body, such as funeral home information or details about transporting your baby's body yourself if you wish.

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You may also want to include what's called parallel planning, to think ahead about scenarios that might be possible for your baby. 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 very 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 intensive 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.

Your birth plan is a way to share your decisions and hopes with your caregivers, who can use it as a guide as your baby's birth unfolds. A birth plan is not set in stone; you can modify it and be flexible if new circumstances arise or if your wishes change. Decisions and plans can always be adjusted as the baby makes his or her needs known. You can let your baby lead you.

—Adapted from A Gift of Time: Continuing Your Pregnancy When Your Baby's Life Is Expected to Be Brief, by Amy Kuebelbeck and Deborah L. Davis Ph.D. (Johns Hopkins University Press, first edition 2011, second edition 2023).