Introduction to Perinatal Palliative Care

Denney-Koelsch, Erin; Côté‐Arsenault, Denise

doi:10.1007/978-3-030-34751-2_1

Cited by 5 publications

(26 citation statements)

References 14 publications

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“…Despite the increased possibility of sustaining life and thereby often improving outcomes for critically ill neonates [ 1 ], children still face the greatest risk of death in their first 28 days of life [ 2 , 3 ]. Healthcare professionals (HCPs) working in a neonatal intensive care unit (NICU) take care for neonates at the threshold of viability or those who are critically ill and their families, whereas a significant number of critically ill neonates face potentially adverse prognoses.…”

Section: Introductionmentioning

confidence: 99%

Uncertainty and probability in neonatal end-of-life decision-making: analysing real-time conversations between healthcare professionals and families of critically ill newborns

et al. 2023

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Background A significant number of critically ill neonates face potentially adverse prognoses and outcomes, with some of them fulfilling the criteria for perinatal palliative care. When counselling parents about the critical health condition of their child, neonatal healthcare professionals require extensive skills and competencies in palliative care and communication. Thus, this study aimed to investigate the communication patterns and contents between neonatal healthcare professionals and parents of neonates with life-limiting or life-threatening conditions regarding options such as life-sustaining treatment and palliative care in the decision-making process. Methods A qualitative approach to analysing audio-recorded conversations between neonatal team and parents. Eight critically ill neonates and a total of 16 conversations from two Swiss level III neonatal intensive care units were included. Results Three main themes were identified: the weight of uncertainty in diagnosis and prognosis, the decision-making process, and palliative care. Uncertainty was observed to impede the discussion about all options of care, including palliative care. Regarding decision-making, neonatologists oftentimes conveyed to parents that this was a shared endeavour. However, parental preferences were not ascertained in the conversations analysed. In most cases, healthcare professionals were leading the discussion and parents expressed their opinion reactively to the information or options received. Only few couples proactively participated in decision-making. The continuation of therapy was often the preferred course of action of the healthcare team and the option of palliative care was not mentioned. However, once the option for palliative care was raised, the parents’ wishes and needs regarding the end-of-life care of their child were obtained, respected, and implemented by the team. Conclusion Although shared decision-making was a familiar concept in Swiss neonatal intensive care units, parental involvement in the decision-making process illustrated a somewhat different and complex picture. Strict adherence to the concept of certainty might impede the process of decision-making, thereby not discussing palliation and missing opportunities to include parental values and preferences.

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Section: Introductionmentioning

confidence: 99%

Uncertainty and probability in neonatal end-of-life decision-making: analysing real-time conversations between healthcare professionals and families of critically ill newborns

et al. 2023

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“…PnPC involves a comprehensive supportive care for the affected child and their families by a multidisciplinary team ensuring highest comfort and quality of life for all involved ( 10 , 11 ). This care includes end-of-life (EOL) care for the child and extends into the bereavement period.…”

Section: Introductionmentioning

confidence: 99%

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

et al. 2021

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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.

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“…Perinatal palliative care (PPC) is an option for patients who discover that their infant has a life-limiting fetal condition (also “life-limiting fetal anomaly,” or “defect”), which decreases the burden of the condition using a multidisciplinary approach, with emphasis on communication and symptom management, especially anticipatory grief. 1 In the past two decades, health care workers and patient support and advocacy initiatives have developed PPC from a nascent concept in the late 1990s to hundreds of robust programs across the United States. 2 3 4 5…”

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confidence: 99%

“…While there are no comparative studies, about the same proportion of women report satisfaction with their choice of PPC and termination of pregnancy—after choosing either disposition, only approximately 3% of women experience regret. 1 A possible explanation of this similarity is that grief begins at diagnosis and persists through important milestones even years after the loss. 11 Pregnancy termination (abortion) is not a zero-risk option and is not desired by all patients.…”

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confidence: 99%

“…17 18 These case series were seminal for a large proportion of patients choosing PPC (75–85%) with no major maternal morbidity or mortality, which is consistent with older 19 and newer 20 experience. Experts have given detailed commentary on the nuances of balancing maternal risk with procedures such as cesarean sections in the setting of a life-limiting condition, 1 but most conclude that PPC is a safe model as long as it remains attentive to both the fetal and maternal patients, never excluding the mother's safety even if bonding is affected. 1…”

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confidence: 99%

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

Buskmiller

Calhoun

2021

Am J Perinatol

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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

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Introduction to Perinatal Palliative Care

Cited by 5 publications

References 14 publications

Uncertainty and probability in neonatal end-of-life decision-making: analysing real-time conversations between healthcare professionals and families of critically ill newborns

Uncertainty and probability in neonatal end-of-life decision-making: analysing real-time conversations between healthcare professionals and families of critically ill newborns

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

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

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