What is Perinatal Hospice?
Unless you or a loved one have utilized the services of a perinatal hospice program, you likely didn't even know such a thing existed. Hospice, as we know, is for dying people… so why would we be contemplating such a system for a newly born baby? Especially in a first-world country, where women have access to adequate medical care and babies are always born healthy?
Perinatal hospice exists because the unfortunate reality is babies do die, even with the best available medicine. Used when a poor prenatal diagnosis has been given, it allows families an opportunity to embrace their child's life, however limited that life will be.
Built upon traditional hospice practices, perinatal hospice guides parents through both medical and anticipatory and post-partum grief processes, by coordinating care to assure their needs are met with the least additional distress. Specific items which may be included in a perinatal hospice program include (this is not an all-inclusive list):
Coordinated care — Over the course of a pregnancy where a fetal anomaly is detected, typical prenatal appointments can be multiplied at least three-fold. Excess diagnostic appointments may include multiple anatomy scans, fetal echocardiograms, fetal non-stress tests, or fetal MRI. For the family facing a prenatal diagnosis, streamlining appointments by scheduling multiple tests in one day can help cut down on time spent in physicians' offices, as well as in the environs of other expectant mothers who will be taking babies home at the end of their pregnancies.
Access to a social worker and/or hospital clergy — A medical practice or hospital staff can assign a social worker or chaplain to you who will provide social and spiritual support for non-medical needs. These professionals can help with assuring medical staff are equipped to handle both your, and their, emotional responses to visits and can help you access programs which suit your needs. This could include not only support for clinical practices, but things like bypassing regular hospital restrictions on the number of people in the delivery room, as well as extending visiting hours so that family and friends can attend mom, dad, and baby for the entire length of baby's life.
A medical plan for palliative care for baby — Often a family’s biggest concern when delivering a baby with a serious birth defect surrounds the issue of comfort. Hospice can assure the proper medical professionals are involved in baby’s life to deliver pain relief, if necessary, as well as to monitor nutrition and any other needs which arise.
What Does Perinatal Hospice Look Like?
With the plethora of prenatal tests available, families generally learn early in pregnancy there's a problem. Once they've made the decision to carry to term, hospice starts. Prenatal care focuses on mom and dad's comfort, at this point, with assuring the most positive experiences during visits. Over the course of the pregnancy, a care plan is developed for when baby is born.
Some parents will choose to make plans for a funeral and burial/cremation during pregnancy, anticipating the post-partum period will be rough and giving themselves time to immerse themselves in the grieving process.
Most parents will be encouraged to make memories with their children — trips to a favorite family restaurant, the beach, or sporting events may be options. Including their unborn baby in family traditions will be important as well. The focus is on including baby in whatever activities s/he would be involved in, if s/he were expected to live.
Often the birth is planned via induction or C-section, in order to control the process and assure all of a family's needs are addressed. If a family is religious a pastor or priest may be permitted to attend the family during birth to comfort them and baptize/bless baby. Additional birth support may also be present — including doulas specifically trained to help families navigate this terrain. Typical post-birth practices, such as testing and assessments, may be put on hold in order to get baby to mom and dad as quickly as possible. Baby will most likely not leave mom as she's wheeled out of the delivery room and into recovery.
During this time, mother's health is top priority. No hospice practice will be utilized which may endanger a woman's life. Baby is also cared for as an individual patient, and if parents wish, assessed at birth to assure the diagnosis is correct, and given pain relief if needed.
Once settled in a private room (moms whose babies will soon die are generally not housed in the maternity ward), family and friends are liberally admitted according to parents' desires. Professional photographers may be called to document baby's life. A special cooling bed called a cuddle cot may be used so parents can room-in with baby. Plaster hand and footprints may be taken, Christmas or other holiday-focused ornaments created, and favorite hand-me-down clothing may be used. During this time, hospice staff is available both for counsel and to help facilitate streamlined and non-intrusive medical care and emotional support for parents. Some of the biggest obstacles come from family members and staff who may object to practices like using a cuddle cot. Hospice staff can help families navigate these conversations in a calm and productive way.
Hospice care may continue with a doula working post-partum with mom after she leaves the hospital, and through the funeral process in regards to chaplains and social workers.
How Should Pro-Life Advocates Promote Perinatal Hospice?
Like a typical hospice program, there are things which pro-life advocates must consider — most importantly, have opportunities for treatment been exhausted?
Whether for an adult, child, or neonate, hospice should never be considered in the case where a child can benefit from medical care. Many times this consideration comes with the understanding a child may endure extensive medical treatments to maximize their potential happiness. We must be vigilant to ensure parents are not encouraged to forgo treatments for a child who would survive with disabilities out of what they perceive as compassion: this is an ableist viewpoint, and one which those with disabilities speak on more eloquently than I ever could.
Neonates are human beings, with the same rights to proper medical care as any other child. By permitting parents of children who've received prenatal diagnoses to limit treatment for their children, we have inadvertently set up a system of passive euthanasia. Hospice workers and family advocates must be discouraged from promoting this course of action. Pro-life advocates must continue to speak up for the life of the disabled neonate just as they speak for the life of the disabled fetus. Allowing a child who could live, to die, could be colloquially referred to as a "fourth-trimester abortion," an action, or in this case inaction, which denies the humanity of the human being involved.
Hospice, like any other medical-related treatment, should be embarked upon from a life-affirming position. Working towards educating your peers on practices which will help families consider life rather than abortion is always the most important aspect of pro-life work, and in this context perinatal hospice can be a wonderful tool to utilize. Encouraging physicians as well as local hospitals to adopt these practices benefits everyone whether pro-life or pro-choice, in addition to encouraging a culture of life to bloom.
For more information, to see if this type of care is available in your area, and to learn how you can promote these programs, please see:
For information on supporting parents who are facing a poor prenatal diagnosis, please see below. Please note that to my knowledge there are currently no secular sources for this type of care, but the following organizations serve all families regardless of religious beliefs or lack thereof.