From compassion to action: perinatal palliative care at the Bonifratres Medical Centre (2014-2023) - part one.

2.4 million neonatal deaths and 2.6 million stillbirths occur each year. Over 98% of perinatal loss occurs in low- and middle-income countries. Despite the global burden of perinatal loss, access to relevant perinatal palliative and psychosocial care is poor and understudied. In this review, we synthesize perinatal palliative care literature from low- and middle-income countries. We focus on the clinical practice of perinatal palliative care and educational models being used in resource-constrained settings. We used a systematic scoping review approach, following the Preferred Reporting Items for Systematic Reviews and Meta-Analysis extension for Scoping Reviews (PRISMA-ScR) checklist. The PubMed, Scopus, Embase, Cochrane, CINAHL, and Global Health (embsco) databases were searched. There were no date or language restrictions placed during the search. Study selection was conducted using Covidence to facilitate a staged review process. A total of 10,145 articles remained after removing duplicate studies. Following the three-staged review, 81 studies were included in our analysis. The largest portion of published perinatal palliative care literature focused on clinical care (n=44). Nine studies focused on provider training in perinatal palliative care and 28 studies addressed parent or family experience. Of the included studies, 84.9% had a first or last author from a low- or middle-income country and 91.8% included an author from the country of focus in the manuscript. The findings presented in this scoping review reveal that healthcare workers and families desire improved guidelines about perinatal palliative care that reflect the realities of local culture and resources. Additionally, providers need enhanced training in perinatal palliative care techniques and management approaches that can be applied in a range of clinical settings. Global perinatal palliative care strategies must encompass compassionate communication with families, psychosocial support after stillbirth or neonatal death, and emotional and mental health support for healthcare workers who provide perinatal palliative care.

Advances in prenatal testing and diagnosis have resulted in more parents learning during pregnancy that their child may die before or shortly after birth. These advances in testing and diagnosis have also resulted in more parents choosing, despite the diagnosis, to continue their pregnancies and pursue a palliative approach to their infant's short life. Perinatal hospice and palliative care is a growing model of care developed in response to these parents' previously unmet needs. A seldom-discussed opportunity to provide this care exists in outlying community hospitals, which are ideally placed to provide care close to home for families who have chosen comfort measures and time with their child. This article reviews the definition and utility of perinatal palliative care, the population it serves, attempts to support a rational for development of community-based programs, and describes one community hospital's experience with perinatal palliative care in their community. This article describes the development and processes of a perinatal palliative care program at a community hospital in Fredericksburg, Virginia. Perinatal palliative care can be developed with the assistance of already existing training materials, resources, and staff. While the cohort of patients may be small, implementing perinatal palliative care in a community setting may result in wider availability of this care and more accessible options for these families. Research possibilities include developing a template for creating a perinatal palliative care program at community hospitals that could be replicated elsewhere; assessing parental satisfaction and quality indicators of perinatal palliative care at community hospitals and at referral hospitals; and assessing outcomes in various settings.

Perinatal palliative care refers to a coordinated care strategy that comprises options for obstetric and newborn care that include a focus on maximizing quality of life and comfort for newborns with a variety of conditions considered to be life-limiting in early infancy. With a dual focus on ameliorating suffering and honoring patient values, perinatal palliative care can be provided concurrently with life-prolonging treatment. The focus of this document, however, involves the provision of exclusively palliative care without intent to prolong life in the context of a life-limiting condition, otherwise known as perinatal palliative comfort care. Once a life-limiting diagnosis is suspected antenatally, the tenets of informed consent require that the pregnant patient be given information of sufficient depth and breadth to make an informed, voluntary choice for her care. Health care providers are encouraged to model effective, compassionate communication that respects patient cultural beliefs and values and to promote shared decision making with patients. Perinatal palliative comfort care is one of several options along a spectrum of care, which includes pregnancy termination (abortion) and full neonatal resuscitation and treatment, that should be presented to pregnant patients faced with pregnancies complicated by life-limiting fetal conditions. If a patient opts to pursue perinatal palliative comfort care, a multidisciplinary team should be identified with the infrastructure and support to administer this care. The perinatal palliative care team should prepare families for the possibility that there may be differences of opinion between family members before and after the delivery of the infant, and that there may be differences between parents and the neonatal care providers about appropriate postnatal therapies, especially if the postnatal diagnosis and prognosis differ substantially from antenatal predictions. Procedures for resolving such differences should be discussed with families ahead of time.

Perinatal palliative care refers to a coordinated care strategy that comprises options for obstetric and newborn care that include a focus on maximizing quality of life and comfort for newborns with a variety of conditions considered to be life-limiting in early infancy. With a dual focus on ameliorating suffering and honoring patient values, perinatal palliative care can be provided concurrently with life-prolonging treatment. The focus of this document, however, involves the provision of exclusively palliative care without intent to prolong life in the context of a life-limiting condition, otherwise known as perinatal palliative comfort care. Once a life-limiting diagnosis is suspected antenatally, the tenets of informed consent require that the pregnant patient be given information of sufficient depth and breadth to make an informed, voluntary choice for her care. Health care providers are encouraged to model effective, compassionate communication that respects patient cultural beliefs and values and to promote shared decision making with patients. Perinatal palliative comfort care is one of several options along a spectrum of care, which includes pregnancy termination (abortion) and full neonatal resuscitation and treatment, that should be presented to pregnant patients faced with pregnancies complicated by life-limiting fetal conditions. If a patient opts to pursue perinatal palliative comfort care, a multidisciplinary team should be identified with the infrastructure and support to administer this care. The perinatal palliative care team should prepare families for the possibility that there may be differences of opinion between family members before and after the delivery of the infant, and that there may be differences between parents and the neonatal care providers about appropriate postnatal therapies, especially if the postnatal diagnosis and prognosis differ substantially from antenatal predictions. Procedures for resolving such differences should be discussed with families ahead of time.

PurposeFrom September 2014 to April 2016, the project “Let me be” was carried out by Gajusz Foundation. We aimed to inform clinical practice by describing a model of perinatal palliative care and to determine who is referred for care, what happens after referral and delivery, pregnancy outcomes, and referral rates.MethodsA retrospective analysis of the medical records of 72 families who qualified for perinatal palliative care; data on other project activities were also presented.ResultsThe most important project outcome was the development of a perinatal palliative care model in which perinatal hospice functioned outside the hospital structure. During the project, 20 training sessions for 126 healthcare workers were organized, guidebooks were prepared for the medical staff and parents, and 2 films were produced. Seventy-two women were enrolled in the perinatal palliative care program. Approximately 4.9–24.2% of eligible families entered the perinatal palliative care program. Trisomies 18,13,21 were diagnosed in 33% of the cases; 47 live births and 21 stillbirths were observed. Four families decided to terminate the pregnancy; 26 children died on the first day of life, and 10 died within the first week of life.Conclusion: Parents who were referred for perinatal palliative care received multidisciplinary support. We observed an increase in the percentage of referrals over 7 years, but the incomplete application of the program remains problematic. Systemic changes in postgraduate training and subsequent legislative changes should also be considered. Our research confirms the characteristics of diagnosis, referrals, and outcomes observed in other studies.What Is Known:• The perinatal palliative care (PPC) programs may be comprehensive, initiated early, and integrative.• Most publications talk about hospital based care.What Is New:• In our model, the perinatal hospice functioning outside the hospital structure takes over the role of the care coordinator and offers a multidisciplinary support for parents.• Due to the insufficient application to the PPC program the systemic changes in the training of obstetricians and legislative changes which would oblige the physician diagnosing a lethal abnormality to inform and refer the woman to PPC should be considered.

For perinatal palliative care (PPC) to be truly holistic, it is imperative that clinicians are conversant in the cultural, spiritual and religious needs of parents. That cultural, spiritual and religious needs for parents should be sensitively attended to are widely touted in the PPC literature and extant protocols, however there is little guidance available to the clinician as to how to meet these needs. The objective of this review article is to report what is known about the cultural, spiritual and religious practices of parents and how this might impact neonates who are born with a life-limiting fetal diagnosis (LLFD). The following religions will be considered—Islam, Buddhism, Hinduism, Judaism, and Christianity—in terms of what may be helpful for clinicians to consider regarding rituals and doctrine related to PPC. Data Sources include PubMed, Ovid, PsycInfo, CINAHL, and Medline from Jan 2000–June 2020 using the terms “perinatal palliative care,” “perinatal hospice,” “cultur*,” and “religiou*.” Inclusion criteria includes all empirical and research studies published in English that focus on the cultural and religious needs of parents who opted to continue a pregnancy in which the fetus had a life-limiting condition or had received perinatal palliative care. Gray literature from religious leaders about the Great Religions were also considered. Results from these sources contributing to the knowledge base of cultural, spiritual and religious dimensions of perinatal palliative care are considered in this paper.

Research shows marked disparities in perinatal deaths across population groups in the UK. The aim of this study was to understand how perinatal palliative care is experienced by parents from culturally-diverse backgrounds and to understand the challenges facing the health and social care professionals working to support them. Twenty-one health and social care professionals and four parents from across England and Wales participated in interviews or focus groups. Thematic analysis revealed three core themes impacting experiences of care: 1) Obstacles and opportunities for effective communication, 2) Religious, spiritual, ethical and moral considerations, and 3) The need for continuing professional development. The Cultural Humility model was applied to the research findings to enhance applications of theory to practice and policy in perinatal care. Participants identified resource constraints, language barriers, cultural stereotyping and discrimination, and a lack of training around culturally sensitive care as core elements negatively influencing practice and exacerbating uncertainties and fears around perinatal palliative care. When considering the vast need of culturally diverse families in perinatal palliative care and the importance of religion, faith, and spirituality, it appears of paramount importance to consider cultural humility within and across intrapersonal, individual, and organisational levels and how these pertain to care.

Patient-centered perinatal palliative care: family birth plans, outcomes, and resource utilization in a diverse cohort

State of the Science on Perinatal Palliative Care

BackgroundThe parents with a diagnosis of life-limiting fetal condition should receive medical information about the nature of defect, prognosis, possibilities of care and obstetric complications and receive psychological, spiritual, legal support. In our model of care, the perinatal hospice - functioning outside the hospital structure - offers a multidisciplinary support and coordinates care in close cooperation with hospitals. The aims of study are: analysis of the birth outcome in patients with life-limiting fetal conditions, perinatal palliative care model evaluation and analysis of factors affecting earlier contact of patients with perinatal hospice.MethodsWe conducted retrospective reviews of medical records of perinatal hospice patients in 2014–2020. The study population was divided into two groups. Group 1 comprised deliveries which ended with the birth of a living newborn; Group 2: pregnancies with intrauterine fetal death and death during delivery. Separately, we analysed patients who underwent cesarean birth.ResultsOut of 72 families, 68 decided to continue pregnancy. The most common diagnoses were trisomies 18 and 13. In 47 cases, deliveries resulted in a live-born newborn; in 21 pregnancies, fetal death occurred. Nineteen pregnancies were delivered via cesarean on obstetric indications. The time interval from diagnosis to first palliative consultation was, on average, 48 days in group 1 vs. 33 in group 2. Women with stillbirths contacted the hospice at an earlier stage of pregnancy (p = 0.0469), and multidisciplinary team consultation in the hospital took place earlier (p = 0.0045) and in a shorter time interval from the first consultation in hospice (p = 0.0298). Patients who were older and lived in large cities contacted hospice earlier.ConclusionSystem solutions should be considered, obliging the physician to refer the pregnant woman to a perinatal palliative care program. Shortening the interval between diagnosis and palliative care consultation would allow for more effective professional support and more time to prepare the parents for losing a child.

Lethal defects lead to the intrauterine death of the fetus or the passing away of the child immediately after birth or in early infancy, regardless of the treatment used. In the case of lethal defects, it is not possible to effectively help the child, despite using the most modern equipment or medicines in the treatment or the progress made by medicine. Parents, who decide to continue the pregnancy, although the fetus has a lethal defect that cannot be cured, may be covered by perinatal hospice care, which is comprehensive and consists in supporting the pregnant woman during the prenatal time, during delivery and after delivery and support of her family, giving full information to the parents about their child's illness. Childcare after birth is focused on protecting the infant from persistent therapy and providing him with appropriate conditions. Aim: To demonstrate the role of perinatal palliative care for pregnant women in whom the results of prenatal tests pointed to a severe developmental disorder in the fetus with a potentially lethal prognosis, and to present a pattern of behavior for their hospitalization in the perinatal hospice. Materials and methods: The retrospective analysis included documentation of 67 patients referred to the RAZEM (TOGETHER) Program in Wrocław in 2014-2018 due to abnormal results of (ultrasound and / or genetic) prenatal tests, which indicated a serious developmental disorder in the fetus with potentially lethal prognosis. Analysis was conducted of sociodemographic data, clinical data on fetal diagnosis, pregnancy and delivery, the procedure for prenatal delivery and postnatal birth. Results: 67 women aged 20-43 years (mean 31.2) were referred to the RAZEM Program. Out of these, 57 women were enrolled for palliative care, which accounted for 85% of those referred to the program. Palliative care was continued in 51 patients, because 6 women decided to terminate their pregnancy during the diagnostic process (10.5%). The most common abnormalities in the fetuses were chromosomal aberrations, CNS defects and kidney defects. In 95% of the cases, intrauterine fetal death or neonatal death occurred. Conclusions: Perinatal palliative care is an indispensable form of care for pregnant women in whom the results of prenatal tests indicate a serious developmental disorder in the fetus with potentially lethal prognosis. The in-hospital model of a perinatal hospice is a beneficial form of care, as it ensures consistency and good communication in the team, which favourably affects its quality.

Since the model of perinatal hospice was first proposed more than two decades ago, its growth has been exponential. Perinatal hospice, now also called perinatal palliative care, is a practical and compassionate model of care for those continuing a pregnancy following a prenatal diagnosis indicating that their baby has a life-limiting condition and might die before or shortly after birth. Well over 300 international perinatal hospice and palliative care programs have been created; many articles have been published in major medical journals; several textbooks and guides have now been published; protocols and training have been developed; and growing numbers of parents are choosing to continue their pregnancies when perinatal hospice care is offered. And now the idea has even reached Pope Francis.

BackgroundThe diagnosis of a life-limiting condition of a child in the perinatal or neonatal period is a threat to parental hopes. Hope is an interactional and multidimensional construct, and in palliative care, it is a determinant of quality of life, survival, acceptance and peaceful death.ObjectiveTo map scientific evidence on parents’ hope in perinatal and neonatal palliative care contexts.Methoda scoping review theoretically grounded on Dufault and Martocchio’s Framework, following the Joanna Briggs Institute methodological recommendations. Searches were performed until May 2023 in the MEDLINE, CINAHL and PsycINFO databases. The searches returned 1341 studies.ResultsEligible papers included 27 studies, most of which were carried out in the United States under a phenomenological or literature review approach. The centrality of women’s perspectives in the context of pregnancy and perinatal palliative care was identified. The parental hope experience is articulated in dealing with the uncertainty of information and diagnosis, an approach to which interaction with health professionals is a determinant and potentially distressful element. Hope was identified as one of the determinants of coping and, consequently, linked to autonomy and parenthood. Cognitive and affiliative dimensions were the hope dimensions that predominated in the results, which corresponded to the parents’ ability to formulate realistic goals and meaningful interpersonal relationships, respectively.ConclusionHope is a force capable of guiding parents along the path of uncertainties experienced through the diagnosis of a condition that compromises their child’s life. Health professionals can manage the family’s hope by establishing sensitive therapeutic relationships that focus on the dimension of hope. The need for advanced research and intervention in parental and family hope are some of the points made in this study.Protocol registrationhttps://osf.io/u9xr5/.

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.

To describe prenatal decision-making processes and birth plans in pregnancies amenable to planning perinatal palliative care. Multicentre prospective observational study. Nine Multidisciplinary Centres for Prenatal Diagnosis of the Paris-Ile-de-France region. All cases of major and incurable fetal anomaly eligible for TOP where limitation of life-sustaining treatments for the neonate was discussed in the prenatal period between 2015 and 2016. Cases of congenital defects amenable to perinatal palliative care were prospectively included in each centre. Prenatal diagnosis, decision-making process, type of birth plan, birth characteristics, pregnancy and neonatal outcome were collected prospectively and anonymously. Final decision reached following discussions in the antenatal period. We identified 736 continuing pregnancies with a diagnosis of a severe fetal condition eligible for TOP. Perinatal palliative care was considered in 102/736 (13.9%) pregnancies (106 infants); discussions were multidisciplinary in 99/106 (93.4%) cases. Prenatal birth plans involved life-sustaining treatment limitation and comfort care in 73/736 (9.9%) of the pregnancies. The main reason for planning palliative care at birth was short-term inevitable death in 39 cases (53.4%). In all, 76/106 (71.7%) infants were born alive, and 18/106 (17%) infants were alive at last follow-up, including four with a perinatal palliative care birth plan. Only a small proportion of severe and incurable fetal disorders were potentially amenable to limitation of life-sustaining interventions. Perinatal palliative care may not be considered a universal alternative to termination of pregnancy. Perinatal palliative care is planned in 10% of continuing pregnancies with a major and incurable fetal condition eligible for TOP.