Perinatal Palliative Care Experience and Outcomes of Journey to Remember, a Community-based Perinatal Hospice Program

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American Journal of Obstetrics and Gynecology







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Objective To describe the outcomes of pregnancies enrolled in a perinatal hospice program after prenatal diagnosis of a life limiting fetal condition. Study Design A retrospective analysis of a perinatal hospice program (PHP) established in 2012 was performed to assess the indications and outcomes of patient participants and to evaluate for any psychological benefits that positively impacted grief. Results During a 6 year period, 83 patients with a life limiting fetal condition were enrolled in the program, 12 of which did not follow up, 55 who received full support, 4 who received partial support, and 12 who received telephone support. The indications for enrollment were as follows: anencephaly (9), Trisomy 18 (31), Trisomy 13 (9), 45X (3), hydrops (2), polycystic kidneys/lower urinary tract obstruction (9), skeletal dysplasia (4), limb body wall complex (2), triploidy (2), congenital heart defects (3), and other indications (9). Eighteen patients were Spanish speaking only and 65 were English speaking. There were 29 fetal deaths and 36 live births. Data was not available for all participants. There were 51 vaginal deliveries, 7 primary cesarean sections, and 7 repeat cesarean sections. Twenty-one patients delivered prematurely while 44 were born full term. Live born neonates died at an age ranging from less than 1 hour (6), 1-24 hours (14), 1-3 days (6), 4 days - 1 month (0), 1-2 months (1), and 3-5 months (4). Twenty-four babies died in the hospital, and 7 were discharged and later died at home. There are 5 children who are still living. In year 6, a survey was sent to all parents. One-hundred percent of parents stated that PHP assisted them in coping with their experience. Reasons for their satisfaction were that they were able to discuss their worries and concerns, and received encouragement and support. When asked to rate their overall emotional health, responses included: poor 0%, fair 10%, good 31%, very good 31% and excellent 28%. All participants that responded said they would definitely recommend a PHP to others. Conclusion A perinatal hospice program providing palliative care to parents carrying a fetus with life limiting conditions is a viable option to termination of pregnancy and has the potential of having tangible psychological benefits to these parents.


Obstetrics and Gynecology



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