Creating a Multidisciplinary Palliative Plan of Care for Conjoined Twins

Abstract

When parents receive a diagnosis of a life-threatening condition, integrating a perinatal palliative plan of care should be considered. Palliative care emphasizes the importance of planning for the limited amount of time families may have with their baby. A cesarean birth was planned at 34-weeks gestation for a woman who was pregnant with a conjoined set of twin female fetuses. The physical nature of the anomaly was incompatible with life because they shared major organs, including the heart. In anticipation for this case, multidisciplinary team meetings were held to ensure that anticipatory guidance could be provided to the woman, her family, as well as all members of the health care team. After birth, the newborns were dried and swaddled; the focus was to monitor the newborns’ comfort, support the woman and her husband, answer questions, and allow complete bonding to take place among the four of them. During the multidisciplinary meetings, a plan had been created to tie in other disciplines to assist in the plan of care. A hospital-based photographer captured candid moments during the birth as well as during the recovery period. After being bathed by the nursery nurse, the photographer captured beautiful photos of the newborns wearing special outfits that had already been carefully chosen by the parents. Footprints, handprints, and locks of hair were collected for a memory box that, once completed, was given to the family. Child life specialists and the palliative care team provided emotional support as well as entertainment for the family’s 2-yr-old daughter. Shortly after birth, the newborns took their last breath; all of the family’s wishes and considerations had been implemented on the basis of the palliative plan of care. By considering a palliative plan of care for patients with expected perinatal loss related to physical anomalies, anticipatory guidance is possible for the patient, their families, as well as the entire health care team. This allows for the creation of a holistic palliative care environment that fosters leadership and patient advocacy among the health care team.