When One Knows a Fetus Is Expected to Die: Palliative Care in the Context of Prenatal Diagnosis of Fetal Malformations

Catania, Taisa Rocha; Bernardes, Lisandra Stein; Benute, Gláucia Rosana Guerra; Gibeli, Maria Augusta Bento Cicaroni; Nascimento, Nathalia Bertolassi do; Barbosa, Tercilia Virginia Aparecida; Krebs, Vera Lúcia Jornada; Francisco, Rossana Pulcineli Vieira

doi:10.1089/jpm.2016.0430

Cited by 26 publications

(33 citation statements)

References 32 publications

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“…Training for health-care providers who practice perinatal palliative care in various environments from the antenatal environment, to the delivery room, the neonatal intensive care unit and in pediatrics is recognized as requiring improvement and a structured approach. [23][24][25][26][27] The PPCS serves as a useful tool to easily identify areas where knowledge can be improved. Further research will focus on continued evaluation of the PPCS and adaptation for use in pediatric palliative care.…”

Section: Discussionmentioning

confidence: 99%

Development and Implementation of a Survey to Assess Health-Care Provider’s Competency, Attitudes, and Knowledge About Perinatal Palliative Care

et al. 2018

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Perinatal palliative care is an emerging area of health care. To date, no published tools assess health-care provider's knowledge and level of comfort in providing such care. A 2-phase study was undertaken to develop and implement a survey to evaluate the self-assessed competency, attitudes, and knowledge of health-care providers working in perinatal palliative care. Phase 1 included a review of the literature and appraisal of palliative and death-related instruments to inform the initial draft of the Perinatal Palliative Care Survey (PPCS). Twenty-four Canadian pediatric palliative care specialists critiqued the PPCS, establishing its face and content validity. Phase 2 involved administering the PPCS at 4 sites across Canada, resulting in 167 responses from nurses, physicians, and midwives. The majority of participants responded that they possessed a degree of comfort in providing perinatal palliative care, particularly with assessing pain (76%), managing pain (69%), assessing other symptoms (85%), and managing other symptoms (78%). Two areas where participants level of confidence or extreme confidence was diminished included having conversations with families about the possibility of their infant dying (55%) and knowing and accessing community palliative care resources (32%). Responses in the knowledge section identified gaps related to opioid use, pharmacological interventions for breathlessness, pain behaviors, and tolerance developed to opioids and sedatives. Eighty-six percent of respondents stated that if education about palliative care was made available, they would participate with priority topics identified as communication with families (75%), managing symptoms (69%), pain management (69%), and ethical issues (66%). The PPCS provides a useful assessment to determine the educational needs of health-care providers delivering perinatal palliative care.

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Section: Discussionmentioning

confidence: 99%

Development and Implementation of a Survey to Assess Health-Care Provider’s Competency, Attitudes, and Knowledge About Perinatal Palliative Care

et al. 2018

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“…As neonatal palliative care has developed, and an expanding literature is at the disposal of clinicians ( Figure 1 ), there has been greater consideration for PC in the NICU. In recent years, especially as prenatal diagnostics have improved and life-limiting conditions are diagnosed prenatally, some newborn infants will receive concurrent palliative care (even beginning with conversations before birth) while being cared for in the NICU [ 14 , 15 , 16 ]. The care may be oriented toward confirming a prenatal diagnosis and exploring care options, or be directed at the baby’s comfort while not taking on intensive or invasive technological care.…”

Section: Resultsmentioning

confidence: 99%

Pediatric Palliative Care in Infants and Neonates

Carter

2018

Children

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The application of palliative and hospice care to newborns in the neonatal intensive care unit (NICU) has been evident for over 30 years. This article addresses the history, current considerations, and anticipated future needs for palliative and hospice care in the NICU, and is based on recent literature review. Neonatologists have long managed the entirety of many newborns’ short lives, given the relatively high mortality rates associated with prematurity and birth defects, but their ability or willingness to comprehensively address of the continuum of interdisciplinary palliative, end of life, and bereavement care has varied widely. While neonatology service capacity has grown worldwide during this time, so has attention to pediatric palliative care generally, and neonatal-perinatal palliative care specifically. Improvements have occurred in family-centered care, communication, pain assessment and management, and bereavement. There remains a need to integrate palliative care with intensive care rather than await its application solely at the terminal phase of a young infant’s life—when s/he is imminently dying. Future considerations for applying neonatal palliative care include its integration into fetal diagnostic management, the developing era of genomic medicine, and expanding research into palliative care models and practices in the NICU.

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“…This allows for manageable amounts of information to be received by families and gives space for reflection and formation of questions. PnPC is interdisciplinary, utilizing care team members with specific training in psychosocial assessment and spirituality as well as communication and medical expertise to optimize a climate of shared decision-making (77). Parents appreciate receiving balanced information about the diagnosis and all treatment options before making decisions.…”

Section: Exploring Goals Of Care During Perinatal Palliative Care Conmentioning

confidence: 99%

Perinatal Palliative Care Birth Planning as Advance Care Planning

2020

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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.

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When One Knows a Fetus Is Expected to Die: Palliative Care in the Context of Prenatal Diagnosis of Fetal Malformations

Cited by 26 publications

References 32 publications

Development and Implementation of a Survey to Assess Health-Care Provider’s Competency, Attitudes, and Knowledge About Perinatal Palliative Care

Development and Implementation of a Survey to Assess Health-Care Provider’s Competency, Attitudes, and Knowledge About Perinatal Palliative Care

Pediatric Palliative Care in Infants and Neonates

Perinatal Palliative Care Birth Planning as Advance Care Planning

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