Parents Reactions to Multi-Disciplinary Perinatal Palliative Care during Pregnancy with a Lethal Fetal Diagnosis

Purpose: Some parents learn through prenatal testing that their wished-for child has abnormalities that are incompatible with life. Their fetal diagnoses launch them into appointments with sonographers, obstetricians, genetic counselors, perinatologists, maternal-fetal medicine specialists, bereavement nurses, perinatal palliative care programs, hospice, and neonatologists. The purpose of this presentation is to describe parents’ reactions to interactions with care providers from multi-disciplines during such pregnancies and to make recommendations of useful interaction styles to care providers.

Methods: Naturalistic, longitudinal. Inclusion criteria: currently pregnant mothers and their willing partners who intend to continue their pregnancy, are 18 years of age or older, speak English and do not have a multiple gestation. Recruitment was done through care providers who obtained permission to contact for us. The goal was to have two interviews with both parents during pregnancy and two more after the birth/death of the baby. The PI conducted all of the interviews either in-person, on the phone, or via video-conference; all interviews were recorded, professionally transcribed, and transcripts were carefully verified. Field notes were included in the transcripts, then entered into Atlas.ti for data management.

Analysis was an iterative process that began at the interview, then moved to transcript texts;  done independently and then with the research team. Memos were written, categories and themes were identified; exemplar quotes were extracted.

Results: 16 mothers and 14 partners were interviewed; most were interviewed 3 times over 6 months. Interviews lasted 1-2 hours. Parents were interviewed together and separately, to gain their unique views. Parents found that compassionate, straight forward, and non-judgmental care providers were very helpful. Unhelpful approaches included silence, withholding information, absent of hope, making assumptions, not asking about personal preference, and only focusing on the baby’s abnormalities.

Interactions with care providers that were helpful led to parental understanding of their baby’s condition, assisted them with birth planning, supported their grief, and facilitated their relationship with their baby, and their personal growth. Unhelpful interactions caused emotional distress, anger, frustration, and increased grief. Care coordination across disciplines was seen as very helpful, supportive, and caring. Using quotes from both parents, recommendations for care providers and perinatal palliative care will be presented.

Conclusion: Parents’ journey drastically changes course after learning their fetal diagnosis. Interactions with multiple care providers can be stressful or helpful. Coordination of care could reduce the stress and provide helpful support for parents. Given the painful situation parents are in, the best possible care should be given that honors the baby and facilitates healthy grieving of the parents.