Perinatal Palliative Care: A qualitative study evaluating the perspectives of pregnancy counselors

Abstract

Background: A prenatal diagnosis of a life-limiting disease raises complex ethical, emotional, and medical issues. Studies suggest that 40%–85% of parents decide to continue the pregnancy if given the option of Perinatal Palliative Care. However, structured Perinatal Palliative Care programs are missing in many European countries. In Germany, parents have the right to free psychosocial support from pregnancy counseling services after the prenatal diagnosis of a life-limiting disease. Aim: We aimed to investigate whether German professional pregnancy counselors perceive the need for structured Perinatal Palliative Care and if so, how it should be conceived. Design: This is a qualitative interview study with purposeful sampling. The interviews were analyzed with the coding method of Saldaña. Setting/participants: A total of 10 professionals from three different pregnancy counseling services participated in the study. Results: The main topics raised by the professionals were as follows: (1) counseling and parental support during the decision-making process; (2) fragmented or missing support infrastructure for parents; and (3) challenges, hesitations, and barriers, particularly from the different stakeholders, regarding a Perinatal Palliative Care framework. They highlighted the importance of the integration of Perinatal Palliative Care in existing structures, a multi-professional approach, continuous coordination of care and education for all healthcare providers involved. Conclusion: A structured Perinatal Palliative Care program is considered as necessary by the pregnancy counselors. Future research should focus on (1) needs reported by concerned parents; (2) attitude and role of all healthcare providers involved; (3) strategies to include stakeholders in the development of Perinatal Palliative Care networks; and (4) outcome parameters for evaluation of Perinatal Palliative Care frameworks.

Objective Assessment of Counselling for Fetal Heart Defects: An Interdisciplinary Multicenter Study

“…For the latter, a national structured perinatal palliative care program would be the optimum setup. However, such programs are missing in many European countries [22]. Regarding TOP, it has been shown that it is more often chosen in situations involving high-risk CHD and complex extracardiac malformations [23].…”

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).…”

Perinatal loss and parental loneliness: Narratives of late termination of pregnancy

“…Considering the weight and impact that LTOP decisions have on prospective parents, it is essential that decisions are recognized as the major life crises that they are that, as a result, require more time and space for support from the healthcare team. However, time pressure and decisional loneliness might also be the result of fragmentation of care and the delay that decentralized care can cause, which might lead to situations where little time is left for a well-informed decisional process (Flaig et al, 2019).…”

“…A more structured implementation of some of the principles of perinatal palliative care might help address this limitation and further complement and integrate the supportive actions of perinatal specialists (Denney-Koelsch & Côt e-Arsenault, 2020; Flaig et al, 2019). Although there is some debate about the role of perinatal palliative care in situations where women or couples consider terminating their pregnancy (Lefkowits & Solomon, 2016;Rusalen et al, 2019), it goes without saying that involved families should receive well-established longitudinal care (including bereavement support) and time to make an informed decision.…”