Parental assessment of comfort in infants affected by life-limiting or terminal conditions treated with a personalized comfort care management

Background For some couples joyful anticipation of parenthood turns to sadness and pain when they learn that their unborn baby has a life-threatening condition. This is one of the most profound, stressful events an adult may experience and perinatal palliative care could be an alternative to termination of these pregnancies. At Morgan Stanley Children’s Hospital of New York-Presbyterian Neonatal Comfort Care (NCC) is a medical care option for those parents who rejected abortion and decide to continue the pregnancy. Guidelines for a personalized medical plan of care focused on infant’s comfort have been developed, however evaluation of the effectiveness of this management is essential. Objective To assess how the parents perceive the state of comfort in infants affected by life-limiting or terminal conditions and treated with personalized comfort measures. Methods Observational study of parents of 17 infants diagnosed with life-limiting or terminal condition and treated with NCC. The parents filled in a questionnaire aimed to assess each baby’s state of comfort. An open question about how they would describe NCC with an image or a metaphor was included. Results Twenty-two questionnaires were collected and analyzed. Parents felt that their child was cared for with solicitude by the hospital staff and thought that the child was satisfied in his/her fundamental needs. The metaphors or images for NCC shown by parents are closely related to transcendence and meaning of life. Conclusion This study, although limited by a small number of subjects, shows that parents of infants with life-limiting or terminal conditions perceive a state of overall comfort of their baby and have found this alternative fits better with their values. There is a suggestion that to hold and to take care their baby once born causes thoughts about death, grief and life’s meaning.