Development and results of perinatal palliative care program: a retrospective cohort study

From September 2014 to April 2016, the project "Let me be" was carried out by Gajusz Foundation. We aimed to inform clinical practice by describing a model of perinatal palliative care and to determine who is referred for care, what happens after referral and delivery, pregnancy outcomes, and referral rates.

A retrospective analysis of the medical records of 72 families who qualified for perinatal palliative care; data on other project activities were also presented.

The most important project outcome was the development of a perinatal palliative care model in which perinatal hospice functioned outside the hospital structure. During the project, 20 training sessions for 126 healthcare workers were organized, guidebooks were prepared for the medical staff and parents, and 2 films were produced. Seventy-two women were enrolled in the perinatal palliative care program. Approximately 4.9-24.2% of eligible families entered the perinatal palliative care program. Trisomies 18,13,21 were diagnosed in 33% of the cases; 47 live births and 21 stillbirths were observed. Four families decided to terminate the pregnancy; 26 children died on the first day of life, and 10 died within the first week of life.

Parents who were referred for perinatal palliative care received multidisciplinary support. We observed an increase in the percentage of referrals over 7 years, but the incomplete application of the program remains problematic. Systemic changes in postgraduate training and subsequent legislative changes should also be considered. Our research confirms the characteristics of diagnosis, referrals, and outcomes observed in other studies.

• The perinatal palliative care (PPC) programs may be comprehensive, initiated early, and integrative. • Most publications talk about hospital based care.

• In our model, the perinatal hospice functioning outside the hospital structure takes over the role of the care coordinator and offers a multidisciplinary support for parents. • Due to the insufficient application to the PPC program the systemic changes in the training of obstetricians and legislative changes which would oblige the physician diagnosing a lethal abnormality to inform and refer the woman to PPC should be considered.