Within the U.S
According to the Pediatric Clinics of North America, “in order to establish normal grieving, the bereaved must accept the reality of the person who has died.” How exactly does this work when an expectant mother learns that she will lose her child to a fatal illness? Few health care facilities today offer perinatal palliative and hospice care programs for families who find themselves in such situations. Perinatal hospice is defined as a health care model offering support, hope, and guidance to families who make an informed choice to carry a pregnancy to term after receiving a fatal diagnosis. This country needs to implement perinatal palliative care and hospice programs in each state
Surely everyone knows of a family member or friend who has suffered the loss of a pregnancy or young child. As a credentialed Stillbirthday birth and bereavement chaplain and doula, I work with families who suffer the loss of a pregnancy or baby, I see firsthand the need for widespread implementation of perinatal palliative care and hospice programs throughout the United States. Annually, thousands of parents are forced to make a decision regarding their pregnancy; whether to terminate or carry a child to term after the diagnosis of a fatal illness. A majority of these babies only live for a matter of hours yet this time means a lifetime for the parents who find themselves losing the opportunity to parent to this baby.
Perinatal hospice was originally developed as a means to help families who received a fatal or potentially fatal diagnosis of their baby while pregnant. This model of care allows families to come to terms with grief and loss of a child over time and with the support of clinical staff, allowing them to feel like real parents. By going through the motions of a pregnancy, taking the time to begin the grieving process and by giving dignity to their child’s short life, the unreal situations become an actual process, making the entire journey real to each family.
Adult hospice care began in Great Britain in 1960’s and became more and more available throughout the following decade (Calhoun & Hoeldtke). While the medical field has steadily advanced, the etiquette and manner in which infant loss and families affected by the loss has not. In today’s medical world, prenatal screening is a standard aspect of patient care, so routine that we rarely think of pregnancy without early testing. The advances in technology have allowed for earlier knowledge and therefore less surprises at birth. Families want this chance to experience pregnancy and to give their child what little bit of time that they are afforded. They want to be prepared to say goodbye.
The movement toward perinatal hospice began nearly 30 years ago, however today, there is still a lack of resources and research available. Those affected by pregnancy loss, infant death and perinatal complications compromise a unique group of patients. These patients are not your typical mothers expecting a bundle of joy. They are not from an older generation who suddenly find themselves faced with making the decision to place a loved one into typical hospice care. These families often face months of grieving before their baby’s delivery and they need those working in the health care system to provide the opportunity, support, and time with their baby to bond. All of these opportunities foster a caring environment for families facing the loss of a child to experience life as parents, to have time to bond with their baby; providing the opportunity for a gradual, not unexpected dive into living after the death of their child. Perinatal hospice allows parents to feel as if they are in control of their own circumstances in a time where a loss will take a drastic toll on health and wellbeing of the entire family.
A few statistics to help put the need for perinatal hospice throughout the United States can be seen in the number of infant deaths vs. live births. For every 1000 live births, there are almost 7 deaths annually (Kobler, Limbo & Oakdale, 2012). Regarding these deaths, 4.7 out of 1000 result in neonatal death, an infant dying after its birth. In the year 2006, there were more than 25 thousand fetal deaths at 20 weeks gestation or after. Additionally, nearly 20 thousand newborns didn’t live 30 days past birth. There are two divisions of care: perinatal (around the time of birth) and neonatal care (care post birth). Perinatal palliative and hospice care settings can vary, including care that is provided in a hospital, birth clinic, hospice facility, and also the home of the affected family. Such an undertaking requires the work of numerous health care roles, each educated and sufficiently trained in how to handle these delicate, difficult situations. Workers within a perinatal hospice care unit might involve an obstetrician, nurses, neonatologist, social workers, chaplains, genetic counselors, midwives, doulas, and therapists.
Perinatal hospice provides support to families facing life altering, fatal diagnosis of the baby that they are expecting. These diagnosis are health issues such as Trisomy 18, Potter’s Syndrome, Anencephaly, heart defects and also stillbirth. You may be asking yourself, how does this affect me? I’m sure at some point in your life you know or have known of someone who lost a child, did this family receive the support that they needed? Put yourself into their shoes and imagine what it would be like to have your world flipped completely upside down while everyone around you goes on about their day, this is how a family suddenly coping with a fatal diagnosis or stillbirth may feel if not given the support and options that should be available to them. With perinatal hospice, parents are provided with options. They feel that they have had a choice in the outcome of what happens to their baby and family. They are given the time to spend with their child, no matter how brief. The ultimate goal of a perinatal palliative and hospice program is to make the lives of these babies comfortable, just as in a typical hospice for adults.