Understanding support needs for people carrying pregnancies with life-limiting fetal conditions: a qualitative study

To understand the experiences and possible gaps in care, including availability of perinatal palliative care, in patients carrying a pregnancy diagnosed with life-limiting fetal anomalies who sought abortion.

From April 2020 to May 2021, we conducted in-depth semi-structured interviews 2-8 weeks after participants had aborted a pregnancy with a life-limiting fetal condition. We recruited English-speaking participants 18 years or older from multiple states with varying legislative support and restrictions towards abortion. Interviews were conducted over the telephone, audio-recorded, transcribed, and coded using QRS NVivo 12 software. We used a grounded-theory approach to identify key findings via inductive reasoning.

Findings from 18 interviews centered around a desire to minimize suffering for a child and hardship for their families if the pregnancy continued, gaps in care by clinicians and health care systems, impact of state regulations, the complex emotional toll of the diagnosis and decision-making process, and the role of abortion stigma on their experience. Only three of the 18 participants had been offered perinatal palliative care or hospice; all were from Indiana, the only state that mandates providing information about perinatal palliative care as an alternative to abortion or full neonatal resuscitation.

Participants having an abortion for life-limiting fetal conditions have rarely heard of perinatal palliative care despite expressing similar goals of care.

Patients seeking abortion for life-limiting fetal conditions frequently describe goals of care that align with a palliative care framework of minimizing perinatal and family suffering. Perinatal palliative care should be offered upon diagnosis of a life-limiting fetal condition regardless of intentions to continue to carry the pregnancy.