Handbook of Perinatal and Neonatal Palliative Care

Limbo, Rana; Wool, Charlotte; Carter, Brian S.; McGrath, Jacqueline M.; Black, Beth; Leuthner, Steven R.; Jones, Emilie Lamberg; Muñoz-Blanco, Sara; Huff, Sue; Boss, Renee D.; Torkildson, Christy; Parravicini, Elvira; McCarthy, Frances; Major-Kincade, Terri; Harris, Leslie L.; Smith, Stacy C.; Nguyen, Meghaan R.; Tosello, Barthélémy; Einaudi, Marie-Ange; Walter, Marie A.; Fry, Jessica T.; Henner, Natalia; Caruso, A.; Dudek, Martha; Carter, Rebecca D.; Wool, Jesse; Hill, Douglas L.; Boyden, Jackelyn Y.; Feudtner, Chris; Munson, David; Kuebelbeck, Amy; Marquis, Marc-Antoine; Payot, Antoine; Waldman, Steven D.; Liddle, Melissa; Waldman, Reid A.; Sharp, Kelley; Andersen, Lezlie H.; Kaemingk, Bethany D.; Collura, Christopher A.; Linebarger, Jennifer; Tracewski, Meghan; Spatz, Diane L.; Cole, Joanna C.M.; Carnevale, Franco A.; Wijlen, Jacqueline van; Owens, Darryl I.; Kifner, Hadley; Hutti, Marianne Hopkins; Baker, Lela A.; Kobler, Kathie

doi:10.1891/9780826138422

Cited by 4 publications

(2 citation statements)

References 0 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Data show that women who opt to continue a pregnancy with an LLC appreciate opportunities to emotionally adjust and report having no regrets about their decision (9,10). A variety of interventions, including anticipatory guidance, prenatal consults, early and continuous bereavement support, and coordination of care allow families to begin the difficult but important process of adjusting to the implications of an LLC (11,12). Formal, integrated palliative care programs have structures in place that ensure the interdisciplinary team (IDT) can communicate well, manage the needs of families, and offer high-quality care.…”

Section: Introductionmentioning

confidence: 99%

The Neonatal Comfort Care Program: Origin and Growth Over 10 Years

Wool

Parravicini

2020

Front. Pediatr.

View full text Add to dashboard Cite

The objective of perinatal palliative care is to provide holistic and comprehensive health care services to women who are anticipating the birth of a neonate diagnosed prenatally with a life-limiting condition and to continue supportive interventions for the mother and neonate after the birth. The nature of pregnancy, with two patients requiring medical care, requires clinicians from different specialties to engage with one another, the patient, and her chosen family members. Following birth, additional skill sets to treat the medical and comfort needs of the neonate, as well as the psychoemotional and medical needs of the mother, are required. An interdisciplinary team is necessary to assist families throughout the pregnancy and postnatal journey, and coordination of such care is an integral component of palliative care services. The number of palliative care programs is increasing, but little is written about the origins of such programs, their subsequent growth, and how transitions of care occur within the programs. In this publication, we will present data garnered from interdisciplinary team members of a single organization, the Neonatal Comfort Care Program at Columbia University Irving Medical Center, and how they provide care for families throughout the pregnancy and postnatal trajectory. We will address the origin and growth of the program, the development of the interdisciplinary team, and the strategies used for high-quality communication and their respective impact on care continuity. We will also provide specific recommendations from data gathered from team members, examine the role of formal and informal education, and identify barriers and future opportunities.

show abstract

Section: Introductionmentioning

confidence: 99%

The Neonatal Comfort Care Program: Origin and Growth Over 10 Years

Wool

Parravicini

2020

Front. Pediatr.

View full text Add to dashboard Cite

show abstract

“…A birth plan documents parental hopes, wishes, and goals of care, serving as a communication tool for the entire medical team. Personalized birth plans vary in content but generally address the following components: pain control for the mother, preference for fetal monitoring, mode of delivery, who to be present in the delivery room, resuscitation measures desired at birth, medical management for the baby, as well as wishes for memory making, and ceremonies (20). Table 1 presents suggested topics for a birth plan.…”

Section: Birth Plansmentioning

confidence: 99%

Decisions Parents Make When Faced With Potentially Life-Limiting Fetal Diagnoses and the Importance of Perinatal Palliative Care

Marc-Aurele

2020

Front. Pediatr.

View full text Add to dashboard Cite

When parents face a potentially life-limiting fetal diagnosis in pregnancy, they then have a series of decisions to make. These include confirmatory testing, termination, and additional choices if they choose to continue the pregnancy. A perinatal palliative team provides a safe, compassionate, and caring space for parents to process their emotions and discuss their values. In a shared decision-making model, the team explores how a family's faith, experiences, values, and perspectives shape the goals for care. For some families, terminating a pregnancy for any reason conflicts with their faith or values and pursuing life prolonging treatments in order to give their baby the best chances for survival is the most important. For others, having a postnatal confirmatory diagnosis of a life limiting or serious medical condition gives them the assurance they need to allow their child a natural death. Others want care to be comfort-focused in order to maximize the time they have to be together as a family. Through this journey, a perinatal palliative team can provide the support and encouragement for families to express their goals and wishes, as well as find meaning and hope.

show abstract

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

Buskmiller

Calhoun

2021

Am J Perinatol

View full text Add to dashboard Cite

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

show abstract

Handbook of Perinatal and Neonatal Palliative Care

Cited by 4 publications

References 0 publications

The Neonatal Comfort Care Program: Origin and Growth Over 10 Years

The Neonatal Comfort Care Program: Origin and Growth Over 10 Years

Decisions Parents Make When Faced With Potentially Life-Limiting Fetal Diagnoses and the Importance of Perinatal Palliative Care

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

Contact Info

Product

Resources

About