Perinatal Palliative Care: A Clinical Guide

ISBN-13: 9783030347505 / Angielski / Miękka / 2020 / 439 str.

Erin M. Denney-Koelsch; Denise Cote-Arsenault

Spis treści

Introduction

Definition of palliative care in general

Difference between palliative care and hospice

Definition and description of perinatal palliative care

Overview of book and its’ intended uses/audience

 

Section 1:  Parent Experiences with Life-limiting Fetal Diagnoses

 

1.       Theoretical Perspectives

a.       Prenatal Attachment

b.      Fetal Personhood

c.       Bereavement theories

d.      Developmental Tasks of Pregnancy in Life-limiting Fetal Diagnoses (LLFD)

2.       Parental Needs

a.       Parental decision-making

b.      Parental needs from health care

c.       Working with families

 

Section 2:  Clinical Care of Families with LLFD

 

3.       Scope of Care of Interdisciplinary Team (Overview)

a.       Obstetrics

b.      Genetics counseling

c.       Neonatology

d.      Palliative care

e.      Nursing care (obstetrics, labor and delivery, neonatal)

f.        Social work

g.       Specialists (cardiology, surgery, mental health, etc)

4.       Palliative Care Specialist Management

a.       Family meetings

b.      Talking about goals of care

c.       Pain & Symptom management (role of palliative care, details in chapters 6, 7)

d.      Concurrent palliative and life-sustaining care

5.       Obstetrical Management

a.       Prenatal care – routine and specialized for LLFD

b.      Ultrasounds (frequency, goal), testing

c.       Intrapartum management and special considerations

                                                               i.      Monitoring

                                                             ii.      C-section vs vaginal delivery

d.      Postpartum care – routine and specialized for LLFD

6.       Neonatal Pain Management

a.       Pain perception in neonates

b.      Pain management approaches

                                                               i.      Nonpharmacologic (including nursing and parent role)

                                                             ii.      Pharmacologic (including opioids)

7.       Non-Pain Symptom Management

a.       Nursing role

b.      Parental involvement

c.       Agitation and irritability (nonpharmacological, pharmacologic)

d.      Increased work of breathing

e.      Constipation

f.        Seizures

g.       Feeding and nutrition

8.       Care in the Community

a.       Home care and hospice

b.      Community resources (bereavement, support groups, etc.)

9.       Spiritual Care in the Perinatal Period  (chaplain)

a.       Spiritual Assessment

b.      Rituals/Baptism?

10.   Ethical Considerations in the Perinatal Period

a.       Ethics of provider presenting options (termination, continuation, palliative care)

b.      Borders of viability

c.       Futility

d.      Feeding and nutrition

e.      Limiting life-sustaining treatment

11.   Bereavement Care

a.       What does it consist of

b.      Where is it provided      

12.   Considerations in Special Populations

a.       Underserved and minority populations

b.      Cultural perspectives on perinatal palliative care

c.       Complex family structure

d.      Parents who have struggled to conceive

                                                               i.      Prior loss

                                                             ii.      Infertility

                                                            iii.      LGBT couples

e.      Multiples

f.        Infants at the borders of viability

g.       When the mother is the one with the life-limiting illness

Section 3:  Perinatal Palliative Care Programs

 

13.   Structure of PPC Programs + Starting a PPC Program

14.   Interdisciplinary Care

a.       Communication within interdisciplinary care team

b.      Birth Planning and Birth Plans

c.       Care coordination

d.      Self-care of care team

15.   Education and Training in PPC

O autorze

Erin M. Denney-Koelsch, MD, FAAHPM              

Associate Professor of Medicine and Pediatrics

University of Rochester Medical Center

Strong Memorial Hospital

Department of Medicine

Division of Palliative Care                     

Rochester, NY 14642 USA

 

Denise Côté-Arsenault, PhD, RN, CPLC, FAAN

Hemak Endowed Professor of Maternal Child Nursing                                           

St. Louis University

School of Nursing

St. Louis, MO 63104 USA

Blurb

This unique book is a first-of-its-kind resource that comprehensively covers each facet and challenge of providing optimal perinatal palliative care. Designed for a wide and multi-disciplinary audience, the subjects covered range from theoretical to the clinical and the practically relevant, and all chapters include case studies that provide real-world scenarios as additional teaching tools for the reader.

Perinatal Palliative Care: A Clinical Guide is divided into four sections. Part One provides the foundation, covering an overview of the field, key theories that guide the practice of perinatal palliative care, and includes a discussion of perinatal ethics and parental experiences and needs upon receiving a life-limiting fetal diagnosis. Part Two delves further into practical clinical care, guiding readers through issues of obstetrical management, genetic counseling, neonatal pain management, non-pain symptom management, spiritual care, and perinatal bereavement care. Part Three discusses models of perinatal palliative care, closely examining evidence for different types of PPC programs: from hospital-based programs, to community-based care, and examines issues of interdisciplinary PPC care coordination, birth planning, and team support. Finally, Part Four concludes the book with a close look at special considerations in the field. In this section, racial, ethnic, and cultural perspectives and implications for PPC are discussed, along with lessons in how to provide PPC for a wide-range of clinical and other healthcare workers. The book closes with a look to the future of the field of perinatal palliative care.

Thorough and practical, Perinatal Palliative Care: A Clinical Guide is an ideal resource for any healthcare practitioner working with these vulnerable patient populations, from palliative care specialists, to obstetricians, midwifes, neonatologists, hospice providers, nurses, doulas, social workers, chaplains, therapists, ethicists, and child life specialists.