Hospice in the Womb

What is perinatal hospice?

  • Perinatal hospice and palliative care is a model of support for parents who find out during pregnancy that their unborn baby has a life-limiting condition, but choose to continue their pregnancies.
  • Support is provided from the time of diagnosis through the baby’s birth and death.
  • The aim is to help parents embrace whatever life their baby might be able to have, before and after birth.
  • It can be thought of as a “hospice in the womb”, incorporating birth planning and preliminary medical decision-making, as well as care at home after birth (if the baby survives longer than a few minutes of hours).
  • This approach includes basic care to satisfy the primary needs of babies, such as bonding with family, warmth and nutrition, as well as medical treatments intended to improve the baby’s life.
  • It also helps families to make meaningful plans for their baby’s life, birth, and death, honouring the baby as well as the baby’s family.
  • The concept was first introduced in medical literature in 1997, and has grown to nearly 250 programs worldwide. It can easily be incorporated into standard pregnancy and birth care; it is largely a frame of mind.
  • It was created in response to one of the most heart breaking challenges of prenatal testing.

Where can I find perinatal hospice and palliative care programs and support?

  • For an international list of programs available, please see: http://www.perinatalhospice.org/list-of-programs.html
  • You can still take a perinatal hospice approach to your pregnancy even without a formal program. This may mean that you have to educate your health care team about perinatal hospice. Even if you have to take the lead, you can be encouraged by knowing that you are parenting your baby in ways that will honour your child as well as your role as parents. What should I consider when thinking about perinatal hospice?
  • Prenatal diagnosis is not perfect. At birth, some babies’ conditions are less or more severe than predicted. Sometimes the diagnosis was ambiguous all along. Perinatal hospice and palliative care encompass all these scenarios.
  • A core principle of hospice and palliative care is to not hasten death. It is about providing a different kind of medical care. Medical intervention may occur to improve the baby’s life, which at times may include surgery, if deemed to be safe and beneficial to the baby.

What should I consider when thinking about perinatal hospice?

  • Prenatal diagnosis is not perfect. At birth, some babies’ conditions are less or more severe than predicted. Sometimes the diagnosis was ambiguous all along. Perinatal hospice and palliative care encompass all these scenarios.
  • A core principle of hospice and palliative care is to not hasten death. It is about providing a different kind of medical care. Medical intervention may occur to improve the baby’s life, which at times may include surgery, if deemed to be safe and beneficial to the baby. For a baby who is expected to die, parents’ original dreams for their child’s long life are shattered. However, their hopes can change direction – for their baby to be treated with dignity, for their baby to be protected until death comes naturally, for their 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.
  • Choosing to continue with such a pregnancy is a parenting decision that honours your baby as well as your role as parents. It allows you to parent your baby for as long as possible, and allows you to give your baby, and yourself, the full measure of your baby’s life and the gift of a peaceful, natural goodbye.
  • A 2015 study published in Prenatal Diagnosis found that “there appears to be a psychological benefit to women to continue the pregnancy following a lethal foetal diagnosis,” juxtaposed against the common results of depression, grief and post-traumatic stress from pregnancy loss due to foetal anomalies.
  • A report in 2013 published in the Journal of Obstetric, Gynaecologic & Neonatal Nursing stated, “The science suggests that perinatal palliative care is welcomed by parents and is a medically safe and viable option. Women voiced positive feedback about their decisions to continue their pregnancies, and parents cited personal growth in the aftermath.”
  • It is important that the risks and benefits of continuation of pregnancy in any of these circumstances are discussed in detail with your doctor. Many life-limiting conditions in the baby do not pose any greater physical risk to you than the normal risks of pregnancy.
  • A major concern for many parents is whether their 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 effectively. Palliative care can be chosen for terminally ill babies.

After Birth

  • After birth, many babies stay with their parents in their hospital room until the baby’s life comes to a gentle and natural end. Some choose to invite extended family and friends to see the baby, while others choose to keep this time quieter and more peaceful.
  • Perinatal palliative care aims at providing basic needs such as warmth and nutrition to babies.
  • If the baby has died before birth, parents may spend as much time with their baby as they wish. Many choose to take photographs or collect footprints and other keepsakes, with the assistance of hospital staff. For those babies who live longer, parents may care for their baby at home, with the support of professionals if needed.

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