When birth turns to loss and grief - experiences, views and care in neonatal end-of-life practice.

The aim was to describe the neonatal end-of-life practice and illuminate Swedish women's lived experiences of the threat and the reality of their neonate's dying and death as well as the care received. A further aim was to explore Muslim women's view of current Swedish neonatal-end-of-life care. In a questionnaire with close-ended questions 144 registered nurses described their experiences, behavior and attitudes in Swedish NICUs towards parents who are reluctant to see, touch, and hold the dying or dead neonate. The neonatal end-of-life practice from 32 Swedish neonatal clinics/wards was described in a questionnaire with close-ended questions. Sixteen women who had lost their neonate about two years earlier were interviewed concerning their lived experiences of losing a neonate and the care they received. Eleven Muslim women, living in Sweden, gave in interviews with open-ended questions their views of current Swedish neonatal-end-of-life care. The results of the studies indicate that most of the registered nurses tried to influence the parents to see, touch and hold the dying and dead neonate. The Swedish neonatal end-of-life practice was largely, similar in all of the clinics/wards. The attitude was respectful towards both the infant and the parents. Most differences were found in the care before birth. The main theme among the women when losing their neonate was an ambivalent transition into motherhood interpreted as broken expectations, total confusion, reality awareness, consciously leave-taking and elusive grief. The women’s lived experiences of the care received were interpreted as feeling both empowered and powerless. Empowered when experiencing benevolence and respect to their individual desires, but powerless when experiencing competent care without humane treatment. The Muslim women's hypothetical view of current Swedish neonatal end-of-life care was that most of them did not want information about foetal impairment during pregnancy, withdrawal of treatment was difficult to accept and mementoes were believed to aggravate the grief. Their trust in God involved forgetting the dead neonate and looking forward. In conclusion the clinical implications are that the caregivers have to be empathetic in treating the person receiving care as a person with individual wishes, spoken and unspoken. In this context principles only state a frame in which to act, not how to act. The caregiver has to subject herself to surprises and perplexity and change the treatment based on subtle directions from the women.