Perinatal Palliative Care Birth Planning as Advance Care Planning

Abstract

Purpose of Review: A significant number of pregnancies are complicated by a fetus with a life-limiting diagnosis. As diagnoses are made earlier in the pregnancy, families experience anticipatory grief and are faced with navigating goals of care for a baby that has yet to be born. With the support of the care team, families can begin to grieve, plan, and make meaningful memories during the duration of the pregnancy, the birth of their baby, and life of the child. Creating a palliative care birth plan, which expands beyond the traditional concept for delivery planning to include prenatal, perinatal, and neonatal care has become an important method for parents to process the diagnosis, for parents to document their wishes, and for members of the care team to communicate with the goal of supporting and enhancing the experience of the family. This articles reviews recent and relevant literature on the importance of birth planning and the role of perinatal palliative care when a life-limiting fetal diagnosis is made. Recent Findings: The process of birth planning is an important component of perinatal palliative care. Through this process, families can express their fears, values, hopes, and wishes. It also offers an opportunity for providers to communicate these wishes for the remainder of the pregnancy, the delivery, birth, and time afterwards. This has been demonstrated to decrease maternal stress and promote family centered care. Summary: Perinatal birth planning is an important component of perinatal palliative care when a fetus has a life-limiting diagnosis. The process of birth planning can be supportive and therapeutic as well as an important communication tool. With multiple practices and designs of perinatal palliative care programs, there are no standard tools even though important components have been identified. Ultimately, the strategies outlined here can be used as advance care planning tools.

Men’s experiences and need for targeted support after termination of pregnancy for foetal anomaly: A qualitative study

“…While research from the United States, Australia and Europe has recommended structured perinatal palliative care programmes for families who choose to continue a pregnancy with foetal anomalies (Cortezzo et al, 2020; Flaig et al, 2019; Guimarães et al, 2019; O’Donoghue, 2019; Weeks et al, 2020), following TOPFA many parents have reported feeling inadequately supported. Specifically, concerns have included a lack of relevant information to inform decision‐making, inconsistent levels of support during the termination and in follow‐up, and perceived negative attitudes from healthcare professionals (Hodgson et al, 2016; Pitt et al, 2016).…”

Palliative care for a newborn with Patau syndrome with the principles of the nursing process – a case study

“…W planie powinny zostać uwzględnione procedury medyczne określone oraz wyjaśnione przez lekarza prowadzącego, procedury pielęgnacyjne oraz podział obowiązków między personel medyczny a rodziców ustalony i zaakceptowany przez obie strony, określenie potrzeb rodziców względem opieki nad dzieckiem, w tym potrzeb religijnych, a także ich własnych potrzeb, np. w zakresie opieki psychologicznej [13]. W najtrudniejszym momencie, jakim jest zgon noworodka, należy dać rodzicom czas na pożegnanie, a także zapewnić im odpowiednie warunki, tak by uszanować rozpoczęcie procesu ich żałoby.…”

The Path Is Made by Walking—Mapping the Healthcare Pathways of Parents Continuing Pregnancy after a Severe Life-Limiting Fetal Diagnosis: A Qualitative Interview Study

“…The increased use of prenatal diagnostics has led to a growing number of diagnoses of life-limiting fetal conditions [ 1 , 2 , 3 ]. Learning about a severe fetal condition is devastating and traumatic [ 4 , 5 , 6 , 7 , 8 , 9 , 10 ]. Parents react with shock, distress, and feelings of disbelief [ 11 ].…”