The diagnosis of severe (lethal or life-limiting) fetal defects confronts pregnant women, their partners and their health care providers with the devastating paradox of the end-of-life at the beginning of life. The increasing routine use of prenatal testing has increased the numbers of pregnant women who are diagnosed with severe fetal defects. Continuation of pregnancy that is known to likely end in fetal or neonatal death presents challenges in the perinatal setting. Health care providers have recognized the importance of care tailored to the specific needs of these women and their partners, hence end-of-life care in perinatal settings has become increasingly common, although ambiguity exists in the application of traditional hospice or palliative end-of-life care models in this setting. Accordingly, the aims of the proposed study are to: (a) explore the continuation of pregnancy after diagnosis of a severe fetal defect as a new form of perinatal loss and (b) describe the implementation of an end-of-life care model in one perinatal setting addressing this form of loss. The UNC at Chapel Hill School of Medicine's Center for Maternal and Infant Health (the Center) provides perinatal end-of-life care under the rubric of perinatal palliative care, recently changed from perinatal hospice;providers continue to develop this model of care to address the complexities involved in the care of women who continue pregnancy with a fetus likely to die in utero or soon after birth. Twelve women will be recruited from the Center for this longitudinal ethnography. In addition, their intimate partners will be recruited, as will health care providers involved with the women's care. Pregnant women and partners will be interviewed 4 times over a one-year period, beginning soon after the diagnosis is made. Providers, who will be interviewed at least once, will include those most directly associated with the woman's care, including but not limited to her primary obstetric care provider and labor and delivery nurse. Participant observations of a weekly clinical conference in which diagnoses and prognoses are determined will be made over 26 consecutive weeks. Two questionnaires will be administered at each contact with women and their partners, the Clinical Epidemiologic Scale for Depression and the State-Trait Anxiety Scale (state version);the Perinatal Grief Scale will be administered at each contact after delivery. Additional data will be collected from medical records, documents and artifacts of pregnancy and delivery. The extension of end-of-life care into the perinatal period is new and has not been studied extensively. This research will address the conceptual foundations for end-of-life care in the perinatal setting, when pregnant women, their partners and their health care providers face immense challenges when the expectation of a healthy infant is replaced with the prospect of fetal or neonatal death.
With increasingly routine use of prenatal testing, more couples face the devastating consequences of learning of a severe (lethal or life-limiting) fetal defect. End-of-life care is increasingly available for these couples who continue the pregnancy despite the severe diagnosis;however little is known yet about the extension of traditional end-of-life care models into the perinatal period. It is imperative that end-of-life care models appropriate to the perinatal setting be developed in response to couples'complex needs when pregnancy will likely end in fetal or neonatal death.
