Handbook of Perinatal and Neonatal Palliative Care

Rana Limbo, PhD, RN, CPLC, FAAN, is the associate director and senior faculty consultant of ResolveThrough Sharing (RTS), Gundersen Health System, La Crosse, Wisconsin. Charlotte Wool, PhD, RN, FAAN, earned her bachelor of science in nursing from Bloomsburg University and began her career cross training in perinatal and neonatal units. She became a clinical nurse specialist after graduating from the University of Phoenix with a master’s in nursing. In that role she taught undergraduates, wrote and taught curricula for registered nurses in obstetrics and the NICU, developed and managed community perinatal education, and provided care at the bedside. Her diverse roles enabled her to work with parents across the pregnancy trajectory and informed her current program of research in perinatal palliative care. Dr. Wool earned her PhD in nursing from the University of Texas at Tyler in 2011. She has designed and executed numerous studies that broaden the evidence base in perinatal palliative care, including the creation of two psychometrically sound instruments that have been translated into several languages and are in use internationally. As a leader in perinatal palliative care, Dr. Wool continues to focus on the needs of parents and the clinicians who care for them. She has increased our understanding of what parents who anticipate the loss of their infant want and need. Dr. Wool actively partners with experts in the field to ensure an interdisciplinary voice in her publications. She has co-authored palliative care position statements for the National Association of Neonatal Nurses and the National Perinatal Association. Dr. Wool is a frequent invited speaker for international organizations and maintains her primary interest in excellent outcomes for families. In recognition of her ongoing contributions to the field, she was inducted as a Fellow into the American Academy of Nursing in 2019. Brian S. Carter, MD, FAAP, earned his bachelor of science in biology at David Lipscomb College and his medical doctorate from the University of Tennessee, College of Medicine—both with honors. He completed his residency in pediatrics at Fitzsimons Army Medical Center and his fellowship in neonatal–perinatal medicine at the University of Colorado—he is Board Certified in both. His scholarly interests have long included medical ethics and palliative care. Dr. Carter joined other early pediatric palliative care advocates and helped lead the way toward the integration of palliative care within the NICU and in the prenatal diagnostic clinics. His work has included decision-making in the NICU, incorporating parents into the care of their newborn, post-NICU follow-up, and the interdisciplinary team’s role in neonatal–perinatal palliative care. He continues to practice neonatology, see patients in follow-up, teach, write, and speak. He has published numerous peer-reviewed journal articles, book chapters, and co-edited or co-authored three books. He is a Fellow of the American Academy of Pediatrics and received honors from the AAP and the National Hospice and Palliative Care Organization.

Contributors

Foreword

Preface

Acknowledgments

About the Art and Artists

SECTION 1: UNDERSTANDING PALLIATIVE CARE

1. Advancing Palliative Care to Perinatal and Neonatal Settings

2. Neonatal and Perinatal Palliative Care Services and Programs

3. Creating Seamlessness in Palliative Care Services

SECTION 2: CARING FOR THE WHOLE FAMILY IN PALLIATIVE CARE

4. Comfort in Perinatal and Neonatal Palliative Care: An Innovative Plan of Care Focused on Relational Elements

5. Suspending Judgment: Being With and Knowing the Family

6. Helping Siblings Connect, Relate, and Say Goodbye

7. Barriers to Referring Patients for Perinatal Palliative Care

SECTION 3: PLANNING AND DECISION-MAKING

8. Communicating Devastating News

9. Grief and Memories Begin With Diagnosis

10. Anticipatory Guidance: Birth and Advance Care Planning

11. Difficulty in Predicting Survival: Genetics and Genetic Counseling

12. “Compatible With Love”: Qualitative Analysis of Decision-Making Rationale of Parents Who Continue a Pregnancy Affected by a Life-Limiting Fetal Condition

13. Perinatal Regoaling in the Face of Serious Illness: Hopeful Thinking, Good-Parent Beliefs, and Uncertainty

14. Building and Sustaining Relationships During Pregnancy

SECTION 4: PHYSICAL ASPECTS OF PALLIATIVE CARE: DIAGNOSIS, TREATMENT, AND OUTCOMES

15. Attending to Pain and Suffering in Palliative Care

16. Managing Pain and Discomfort in the Mother

17. Perinatal Palliative Care in the Context of Fetal or Neonatal Surgery

18. Palliative Care at the Time of Unexpected Premature Delivery

19. Compassionate Extubation and Withdrawal of Life-Sustaining Therapies

SECTION 5: SUPPORTING FAMILIES AND CARE PROVIDERS THROUGH THE NUANCES OF PALLIATIVE CARE

20. Lactation and Breastfeeding in the Context of Perinatal Palliative Care

21. Ten Ethical Principles for Neonatal Palliative Care

22. Spirituality: The Effects of Another’s Pain and Suffering on Care Providers

23. Assessing Perinatal Grief Intensity in the Palliative Care Setting

24. Strategies to Honor Professional Well-Being in Perinatal and Neonatal Care

Appendix: National Palliative Care Organizations and Resources

Index