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The Tiniest of Patients: Perinatal Hospice

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Updated April 21, 2008

The Tiniest of Patients: Perinatal Hospice
Photo: Photodisc / Getty Images
My brother and sister-in-law suffered the heartbreak of a lifetime in 1990. They had a daughter born prematurely with V.A.T.E.R. Syndrome; a condition that is made up of multiple congenital malformations. She had multiple problems that included a hole in her heart and blocked intestines and urethra. She was in critical shape and needed multiple surgeries to correct the problems; her first 5 years were mapped out according the surgeries she would have.

It was never meant to be. She endured two surgeries and her tiny body could take no more. She died just two weeks after her birth.

No prenatal testing alerted them to her fate. The first sign anything was wrong was the premature rupture of my sister-in-law's water sack in her seventh month.

Advances in Technology, More Decisions to Make

Back then, prenatal screenings could detect less than a dozen conditions, while now it's possible to test for hundreds. Parents are increasingly faced with decisions whether to continue with a pregnancy that will most likely result in death, or terminate it.

Advanced technology means we are able to save more preterm and critically ill babies now than we could then. The advances also mean the ability to prolong an infant’s inevitable death. The choices parents are faced with are heartwrenching -- to continue with or terminate an abnormal pregnancy; to start or to continue life support of a critically ill infant or let them die?

The Perinatal Hospice Movement

Increased awareness of the needs of dying children and their loved ones has lead to an increase in pediatric palliative care programs. A more recent component of pediatric palliative care, perinatal hospice, is offering parents faced with excruciating decisions regarding the life and death of their infants some much needed support.

Perinatal hospices offer support to parents and their families who are faced with a pregnancy that will most likely result in the death of the infant; parents who want to continue with the pregnancy and to meet their child before he dies.

Perinatal hospice starts at the time of diagnosis, when the child is still in the womb. It may include birth planning and advanced decision making for health care after the baby is born. It continues with traditional hospice care after the birth, if the baby lives longer than a few minutes or hours. With this approach, families are supported through the remainder of the pregnancy, through the difficult decisions that need to be made before and after birth, and through their grieving process.

The Perinatal Team

The ideal perinatal hospice team is comprehensive and integrative. It includes obstetricians, perinatologists, labor & delivery nurses, neonatologists, NICU staff, home hospice nurses, chaplains/pastors and social workers. Perinatal hospice teams may make it possible for families to bring their baby home to die. The team works with the family to develop a plan to bring the infant home, if that is the family’s wish.

A Model of Excellence

San Diego Hospice has been looked to as an example of excellence in perinatal hospice. Their Early Intervention Program includes:

  • Developing a birthing plan with the parents and healthcare providers that include the family’s preferences for medical treatments for the baby at birth.
  • Assisting parents in locating resources and counseling to help the family cope during the pregnancy and after the birth, and death, of the baby.
  • Addressing emotional needs of other children in the family.
  • Guidance nd support in finding hope amidst the family’s grief.
  • Supporting the needs of the baby and family while hospitalized and assisting hospital staff in coordinating care and with discharge planning, if appropriate.
  • Help with creating ways to celebrate the birth and welcome the baby to the family in the hospital or the home.
  • Assisting in creating keepsakes and treasures after the baby’s birth, such as handprints, photographs, locks of hair, etc.
  • Providing referrals to support groups.
  • Helping make final arrangements, memorial services, and goodbyes.
  • Providing bereavement support for the family and other loved ones for a minimum of 18 months after the baby’s death.

It’s heartbreaking to think that parent’s will be both welcoming a baby into their family and saying goodbye at the same time. The grief they feel is a wave that ripples out to other family members, loved ones, caregivers, and health care professionals. Perinatal hospice can be a beautiful and effective facilitator in helping these families find a sense of peace and hope in the midst of their anguish and grief.

Sources:

Ferrell, BR and Coyle, N, Textbook of Palliative Nursing, second edition. 2006, Oxford University Press.

PerinatalHospice.org

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