For Healthcare Professionals
Trauma Informed Perinatal Palliative Care
Perinatal Palliative Care is a coordinated care strategy that comprises options for obstetric and neonatal care that include a focus on maximizing quality of life and comfort for neonates with a variety of conditions considered to be life-limiting or adverse during pregnancy and in early infancy – no matter the diagnosis. It aims to improve the quality of life for both the baby and the family by addressing their emotional, spiritual, and physical needs throughout the pregnancy, birth, and postpartum period. This specialized care respects the life and dignity of the unborn baby by honoring the parents’ wishes and supports the process of pregnancy continuation, the importance of embracing the time these parents will have with their infant and making memories. With a multi-focused approach on honoring patient values, beliefs, culture, and faith, as well as symptom and pain management, and amelioration of suffering, perinatal palliative care can be provided concurrently with life-prolonging treatment and other medical care. It also holds sacred the process of dying and the transition into life after loss with the least amount of trauma possible.
Once a life-limiting or other adverse diagnosis is suspected antenatally, the tenets of informed consent require that the mother be given information of sufficient depth and breadth to make an informed, voluntary choice for her care. Health care providers are encouraged to model effective, compassionate communication that respects patient cultural beliefs, values, and faith and to promote shared decision making with patients.
Life-Affirming vs. Lethal Language in Trauma Informed Perinatal Palliative Care
Research indicates that lethal language such as “fatal fetal anomaly”, “lethal diagnosis” or “terminal prenatal diagnosis”, and “incompatible with life” has potential ethical and moral implications, as it may trigger different obstetric management for the woman who chooses to continue her pregnancy.
Additionally, once lethal language is attached to a baby, care at birth may also be limited. Case studies and research demonstrate the different outcomes experienced by babies who are labeled as “lethal”, compared with those who are stabilized and evaluated at birth, enabling their parents to make informed decisions about medical care.
A life-limiting, congenital anomaly, or other perinatal diagnosis can have significant emotional and psychological consequences for parents of affected babies, with many experiencing shock, sadness, anger, fear, guilt, and grief. After diagnosis, a significant proportion of parents report levels of anxiety and depression warranting clinical intervention.
The use of lethal language in either antenatal or postnatal diagnoses can significantly impact how parents perceive and make decisions regarding their baby. Such language can lead to a fatalistic view of the situation, influencing the moral implications and the potential implication on the parents’ own life and future. A major objective of trauma informed perinatal palliative care is to be sure that parents are informed and equipped to advocate for the life, treatment, and care of their baby and to support parents in their decision-making process.
Doctors cannot predict with any certainty whether a baby will die at birth and Hippocratic medicine promotes treating babies with so-called “lethal prenatal diagnoses” just like every other baby!
What Is Offered
A comprehensive nonmedical case management response to a perinatal diagnosis that is trauma informed, parent centered, research based, and life-affirming. Journey of a Lifetime (JOL) serves as a liaison and assists families in navigating the complexities of their medical encounters. JOL works concurrently and coordinates with the existing medical care and treatment they are already receiving; thus, enabling families to receive value and belief aligned care.
JOL offers emotional, spiritual, educational, tangible support and advocacy from diagnosis, through pregnancy, at birth, during a NICU stay, and up to one year postpartum. Services include, but are not limited to:
- Prenatal Diagnosis Education
- Individualized Birth Plan Development
- Prognosis Education
- NICU Education
- Individualized NICU Care Plan Development
- NICU Support
- Discharge Support
- Transition Support
- Bereavement Support
How Services Are Provisioned
Journey of a Lifetime (JOL) is a highly experienced perinatal palliative care team trained in Trauma Informed Care. JOL prepares families for the possibility that there may be differences of opinion between family members before and after the delivery of the infant, and that there may be differences between parents and the neonatal care providers about appropriate postnatal therapies, especially if the postnatal diagnosis and prognosis differ substantially from antenatal predictions. Procedures for resolving such differences are discussed with families ahead of time.
