Palliative care is a specialized type of medical care given to patients with a life-limiting illness. The aim of palliative care is to alleviate symptoms, pain, and suffering- both physical and mental- in order to improve the quality of life for the patient and their family. Perinatal palliative care is the practice of providing this specialized care to both the babY who has a prenatal diagnosis of a life-limiting condition and the parents who have chosen to continue the pregnancy despite their unborn baby’s diagnosis.
This specialized care respects the life and dignity of the unborn baby by addressing the baby’s quality of life, the process of dying, and the importance of embracing the time these parents will have with their child throughout pregnancy, during labor and delivery, and in the time after birth. Perinatal palliative care is not aimed at changing the diagnosis or finding a cure; rather, it is about giving the parents a voice and active role in the end-of-life care they receive for their baby by honoring the parents’ wishes, supporting the process of pregnancy continuation, making memories, and transitioning into life after loss with the least amount of trauma possible.
According to a study published by scientists at Cork University Maternity Hospital in Cork, Ireland (1), the most profound effect a life-limiting prenatal diagnosis can leave on families is often a psychological one. As a result, the scientists recommend a multidisciplinary team approach that includes obstetricians, specialists, and palliative care to best assist and support parents from the time of initial diagnosis all the way through postnatal care. In a publication of clinical management guidelines, The American College of Obstetricians and Gynecologists and the Society for Maternal-Fetal Medicine recommend that every family who receives a prenatal diagnosis of a life-limiting condition be offered perinatal palliative care services and comfort care following diagnosis, throughout pregnancy, and after delivery (2).
The importance and value of including palliative care for these families cannot be overlooked, as it truly does have the power to change the way these families navigate the diagnosis, experience their pregnancy, and transition into life after loss. Perinatal palliative care can be provided by specialists like palliative pediatricians or it can be provided by a team of well-trained professionals such as physicians, nurses, genetic counselors, chaplains, social workers, and bereavement counselors (3). Perinatal palliative care is an invaluable resource for families because it provides families with support, expertise, and individualized care.
Perinatal palliative care professionals offer tangible support to families by:
meeting with the parents following diagnosis to discuss the parents’ understanding of the diagnosis they have received for their baby
providing parents with more information, insight, and resources to help them process the diagnosis
offering a safe space for parents to ask questions, understand their options, and make the right decisions for their family
explore options for memory-making throughout pregnancy, labor, delivery, time after birth, and in life after loss
helping parents create a comprehensive birth plan that prioritizes the parents’ values and wishes
assessing the parents’ network of support and offering referrals to help parents cope
assisting with funeral planning and spiritual support
Perinatal palliative care professionals are trained and equipped to help parents navigate prenatal diagnoses of life-limiting conditions in ways that align with the family’s philosophy of living, so every family should have access to the resources and support provided by palliative care.
Perinatal palliative care is not only focused on supporting the emotional and social needs of these families. Perinatal palliative care professionals offer comprehensive and in-depth support for the many medical decisions that these parents face. These professionals can help parents understand the options available to them, the realities of each choice, and the many clinical pathways of neonatal care that exist upon delivery.
While parents can and should create a birth plan to prepare for the possible outcomes and their wishes in the event of each outcome, there is so much about these deliveries that is unknown. The duration of the life of a baby born with a life-limiting condition can vary widely, and it is important that parents have access to the support and expertise of professionals like perinatal palliative care providers. These providers can help parents understand each type of intervention that may be available to them. They can provide on-going support and expertise when a baby’s medical needs are different than anticipated. They can help parents find the right support and resources at each step in the process. This expertise helps the parents make informed choices without sacrificing the time they have with their baby.
When parents receive patient-centered care that takes into account their unique life circumstances and philosophy of life, they experience lower stress, anxiety, and distress throughout the process of pregnancy continuation and the bereavement period that follows (4, 5). Personalized, patient-centered care has the ability to shape how parents feel about their experience, cope with their loss, and navigate their grief. The experience of receiving a prenatal diagnosis of a life-limiting condition and facing the loss of a child is never going to be an easy experience, but the process does not have to be as difficult, isolating, or psychologically distressing as it has been for many families.
The individualized care, support, and expertise offered by a multidisciplinary care team that includes a palliative care professional can change the lives of these families in ways that have far-reaching and long-lasting impact.
Mcnamara, Karen, et al. “Antenatal and Intrapartum Care of Pregnancy Complicated by Lethal Fetal Anomaly.” The Obstetrician & Gynaecologist, vol. 15, no. 3, 2013, pp. 189–194., doi:10.1111/tog.12028.
American College of Obstetricians and Gynecologists and The Society for Maternal-Fetal Medicine. “Prenatal Diagnostic Testing for Genetic Disorders.” ACOG practice bulletin, no. 162, May 2016. Washington, DC: The College.
“Gathering Your Care Team.” Carrying To Term, carryingtoterm.org/gathering-your-care-team/.
Marokakis, Sarah, et al. “Prenatal Counselling for Congenital Anomalies: a Systematic Review.” Prenatal Diagnosis, vol. 36, no. 7, 2016, pp. 662–671., doi:10.1002/pd.4836.
Cope, Heidi, et al. “Pregnancy Continuation and Organizational Religious Activity Following Prenatal Diagnosis of a Lethal Fetal Defect Are Associated with Improved Psychological Outcome.” Prenatal Diagnosis, vol. 35, no. 8, 2015, pp. 761–768., doi:10.1002/pd.4603.