A Scoping Review of Perinatal Palliative Care: Allowing Parents to Be Parents

Objective–Perinatal palliative care (PPC) is an option for patients who discover that their infant has a life-limiting fetal condition, which decreases the burden of the condition using a multidisciplinary approach. Study Design–This review discusses the landmark literature in the past two decades, which have seen significant growth and development in the concept of PPC. Results–The literature describes the background, quality, and benefits of offering PPC, as well as the ethical principles that support its being offered in every discussion of fetal life-limiting diagnoses. Conclusions–PPC shares a similar risk profile to other options after life-limiting diagnosis, including satisfaction with choice of continuation of pregnancy. The present clinical opinion closes by noting common barriers to establishing PPC programs and offers a response to overcome each one. Key Points

Perinatal Palliative Care Service: Developing a Comprehensive Care Package for Vulnerable Babies with Life Limiting Fetal Conditions

Background: Perinatal Palliative Care provides comprehensive and holistic care for expectant and new parents, who receive a diagnosis of life-limiting fetal condition and opt to continue pregnancy and care for their newborn infant. Aim: To develop a service providing individually tailored holistic care during pregnancy, birth, postnatal and bereavement period. Methods: Following a baseline survey of neonatologists and discussions with key stakeholders we launched the Perinatal Palliative service at the KK Women's and Children's hospital, Singapore in January 2017. The multidisciplinary team, led by a Palliative care specialist comprised of Obstetricians, Neonatologists, nurses and medical social workers. The Birth defect clinic referred parents with antenatally diagnosed ‘Lethal’ fetal conditions. The team checked the understanding and the decision making process of parents and initiated and finalized advance care plans. The service also embraced deserving postnatal referrals upon request. Results: A total of 41 cases were seen from January 2017 to December 2019. Of these, 26/41(63%) were referred antenatally and had completed advance care plans. 18/41 (44%) died during or shortly after birth and 10/41(24%) continue to survive and are supported by the community palliative team. During this time a workflow was formulated and modified based on parent and team feedback. Conclusion: Awareness of the service has increased over the years and a clear workflow has been formulated. Advance care plans are prepared and documented before birth so as to enable service teams on board to provide well timed pertinent care. Feedbacks from parents about this service were positive.

‘Creating a safe space’: how perinatal palliative care coordinators navigate care and support for families

Background: Families who learn that their unborn baby has a life-limiting fetal condition are often overwhelmed by this news, alongside navigating an unfamiliar healthcare system. A skilled perinatal palliative care coordinator (PPCC) can help these families, yet little is known about their function and roles. Aims: This study sought to describe the PPCC's approach to care, their guiding principles and the roles, knowledge and skills that enable them to provide exemplary care. Methods: This qualitative descriptive study included interviews of 12 expert PPCCs. Directed content analysis was used to identify major codes. Iterative analysis led to theme identification. Findings: Findings include the PPCC's position within the healthcare system, guiding principles, goals, roles and responsibilities, and knowledge and skills. Two figures enhance the understanding of the PPCCs approach to creating a safe space for the family, supporting the interdisciplinary team and facilitating coordinated birth planning. Conclusions: Every perinatal palliative care programme should include a PPCC. Future research on clinical training could examine the effectiveness of an educational intervention, using the detailed knowledge and skills learned in this study as a curriculum.

Evaluation of Care Providers’ Attitude toward Perinatal Palliative Care and its Challenges in the Selected Teaching Hospitals of Tehran in 2019

Objectives: The present study aims to determine the attitudes of care providers including obstetricians, paediatricians and midwives working in perinatal, obstetric and neonatal intensive care unit (NICU) wards of the selected teaching hospitals in Tehran in 2019. In addition, the challenges of providing palliative care from the perspective of these individuals have been examined. Materials and Methods: In this descriptive study, the research population was selected through convenience sampling based on the inclusion criteria. To assess care providers’ attitude toward the perinatal palliative care and the challenges of its implementation, in addition to the questionnaire of demographic characteristics, a researcher-made questionnaire was also used. Results: Most of the care providers (90.5%) believed that parents should be involved in decision-making to select the treatment type. Most of the care providers (90%) believed that the lack of prepared infrastructures is one of the major challenges in providing these types of care. Conclusion: Care providers have almost positive attitudes toward the various dimensions of providing perinatal palliative care, but it has not been properly implemented yet due to the insufficient knowledge of this type of care, the lack of required infrastructures (appropriate conditions in NICUs to provide this type of care, the sufficient number of staff and experts in this field), as well as the health authorities’ neglecting this type of care.

National Divergences in Perinatal Palliative Care Guidelines and Training in Tertiary NICUs

Objectives: Despite established principles of perinatal palliative care (PnPC), implementation into practice has shown inconsistencies. The aim of this study was to assess PnPC services, examine healthcare professionals (HCPs) awareness and availability of PnPC guidelines, and describe HCPs satisfaction with PC and guidelines.Material and Methods: A nationwide survey was conducted in Swiss tertiary NICUs between April-November 2019. Data were examined by descriptive statistics and linear regression models.Results: Overall response rate was 54% (65% physicians; 49% nurses; 72% psychosocial staff). Half of professionals (50%) received education in PC during their medical/nursing school, whereas 36% indicated they obtained further training in PnPC at their center. PnPC guidelines were available in 4/9 centers, with 68% HCPs being aware of the guideline. Professionals who had access to a PnPC team (P = 0.001) or were part of the nursing (P = 0.003) or psychosocial staff (P = 0.001) were more likely aware of having a guideline. Twenty-eight percent indicated being satisfied with PC in their center. Professionals with guideline awareness (P = 0.025), further training (P = 0.001), and access to a PnPC team (P < 0.001) were more likely to be satisfied, whereas HCPs with a nursing background (P < 0.001) were more likely to be dissatisfied. A majority expressed the need for a PnPC guideline (80%) and further PC training (94%).Conclusion: This study reveals lacking PnPC guidelines and divergences regarding onsite opportunities for continued training across Swiss level III NICUs. Extending PnPC guidelines and training services to all centers can help bridge the barriers created by fragmented practice.

Perinatal palliative care

Perinatal palliative care (PNPC) is a holistic multidisciplinary model of care for both baby and family in the event of a perinatal diagnosis of a life-limiting condition. It aims to provide optimal symptom control and end-of-life care to the baby as well as specialized support to families from diagnosis through to birth, death, and bereavement. This chapter aims to address the challenging clinical, ethical, and practical issues specific to perinatal palliative care. It describes antenatal life-limiting diagnoses, the role of anticipatory bereavement care, a palliative care approach to pregnancy, and outlines the complex planning and models of care required to optimally provide for the baby, mother, and family throughout. This chapter ultimately aims to provide management strategies to guide multidisciplinary teams (MDT) to deliver high-quality PNPC to the family as a whole.