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Pregnancy Loss and Infant Death Alliance - Statement (July 10, 2020)
Black Lives Matter

During our last IPBC conference we opened with a keynote addressing the legacy of loss in the African American community and how this legacy may inhibit our efforts as bereavement professionals to create safe spaces to honor the grief of marginalized populations. Little did we know two years ago where we would be today. Following that keynote address, PLIDA moved forward to establish a new committee to address Health Equity, Diversity, and Inclusion (HEDI) in the areas of Pregnancy and Infant Loss. It is the desire of the board that PLIDA as an organization continue to be a leader in two specific ways. The first is describing and providing evidence-based perinatal bereavement care for all families who experience the death of a baby. The second is using PLIDA as a place to highlight, learn, and ameliorate gaps that may exist in providing comprehensive care with respect to race, gender, creed, and religion. We join our nation in the collective sigh, Enough is Enough.

As we move forward our hearts are heavy, but our resolve is strong as we promise to make a commitment to real change in diversity and inclusion within our body and within our communities. In an effort to ignite this change we offer this call to action and challenge each member to evaluate their programs and ways they can make a tangible difference. Our ultimate goal is to be a part of the solution and not an agency of the problem.  

1. Consider the populations you serve. Are there ways to increase diversity for your programs? Are there families of color who have experienced loss that have elected not to use your programs? Have you followed up as to why? How does what is happening now connect to mistrust of our programs? We recommend you watch Trevor Noah: The Broken Social Contract: https://www.youtube.com/watch?v=v4amCfVbA_c
2. Create safe spaces for your communities of color to share their grief and recognize that this is a part of a series of instances of grief on top of grief. This requires intentional work and collaborative discussion. More listening than talking. Anti-racism reading list and resources: https://docs.google.com/document/d/1BRlF2_zhNe86SGgHa6-VlBO-QgirITwCTugSfKie5Fs/preview?pru=AAABcrngt2A*L96Vhqd_7c6m89FzRMv-dg
3. Educate yourself on the Black Lives Matter Movement, take a moment to actually read the collaborative goals of the organization, which was ignited by the death of Trayvon Martin. All lives cannot matter until Black Lives Matter. https://blacklivesmatter.com/
4. Consider the following resources to understand what it means to be an ally, to be intentionally anti-racist. It is not enough to be not racist. If you see something say something. We are all going to have to become a little more uncomfortable to make true change. Silence is not acceptable. https://bethebridge.com/
   https://www.embracerace.org/
5. Is their bias in the way your programs enroll patients, follow up with patients, or observed instances where caregivers have judged the way patients manifest their grief or loss? If so, consider how to improve this beginning with cultural humility to include authentic conversations around racism. Understand that just by virtue of being in the United States our systems are imbued with systematic bias both implicit and explicit and this impacts the way we deliver care 
   https://nmaahc.si.edu/about/news/national-museum-african-american-history-and-culture-releases-talking-about-race-web?fbclid=IwAR3otgVraGL_UHLFjtaApzvz8Ta1cw_qLwpDb1TW5btaJb4dfYXaSuxBgxM

PLIDA offers these five points, detailing resources for promoting self-awareness and transformation. PLIDA’s Health Equity, Diversity, and Inclusion committee (HEDI), chair Terri Major-Kincade, MD, would like to hear from you and your experiences to better guide their work to improve care for all families. 

Through this project to make Black lives matter; we aim to make a difference in this international movement to fight racism. The goal is that by opening our hearts and minds, we will understand more fully what it means to be inclusive.

Pregnancy Loss and Infant Death Alliance - Statement (June 9, 2020)
Black Lives Matter
Today is George Floyd's funeral where he will be laid to rest next to the mother he cried out to. 

As an international organization committed to the support of bereaved families PLIDA understands the sound of collective grief. It is a sound that is simultaneously silent and deafening. Our members know what it is like to grieve in silence yet want to be heard.  Our members know what it is like to suffer unimaginable pain in the loss of a child, and the toll that takes on family members.  Our members know what it is like to desire allies for a problem that for many remains invisible, the pain of pregnancy and infant loss. It is through this lens, the lens of loss that PLIDA joins our nation in mourning the death of George Floyd, Breonna Taylor, and Ahmaud Arbery. Each died through a series of events stemming ultimately from the impact of systemic racism.  It is through the lens of loss that PLIDA unequivocally supports the Black Lives Matter movement and calls for a systematic approach to ending police brutality. It is not enough for us to merely not be racist, but we must actively endeavor to be anti-racist. This will require more dedicated advocacy on behalf of the families we serve, bereaved families who may be voiceless at a time when we can be their voice in our respective organizations and institutions.
 
George Floyd’s final words that included “I can’t breathe” and “Mama, Mama”, is even more poignant when one considers how much we as an organization discuss the last breath in our perinatal hospice and bereavement support programs and the fact that Mr. Floyd’s mother has been deceased many years. In his words we are reminded of every mother who has lost a child and particularly mothers of color who are more likely to die in childbirth, more likely to experience a poor birth outcome and black men and black boys who have a higher likelihood of dying at the hands of police. There is no bereavement support for this kind of loss and our hearts ache along with the hearts of a community that has held this heartbreak for over 400 years.  We want you to know that we see you. We grieve with you. We are devastated with you.  As PLIDA Members, let us be on the side of the history that says” No more”. This is the legacy of loss we meet when seeking to align with our communities of color. This is the legacy we would like to be a part of dismantling. This is a legacy we can change by evaluating our own biases, in our own organizations and institutions and the way we provide bereavement care to our incredibly special and unique populations.
 
Please reflect on the words and ideas in this post. In future writing, we will guide and reflect with you on what we can do… as individuals, as family advocates, and through our organizations and institutions.  We won’t stop here. We can’t.

New Guide for Nurses, Physicians, and Other Health Professionals Released!

On behalf of the PLIDA Board of Directors, congratulations to many PLIDA members and IPBC speakers on the release of "Handbook of Perinatal and Neonatal Palliative Care: A Guide for Nurses, Physicians, and Other Health Professionals." Editors of this resource include:

- Rana Limbo PhD, RN, CPLC, FAAN

- Charlotte Wool PhD, RN

- Brian Carter MD, FAAP

All three editors and Dr. Kathie Kobler, author of the inspiring closing chapter, have been invited to join a plenary panel discussion on perinatal and neonatal palliative care at IPBC 2020 in Chicago!

From the Foreword:

The Handbook of Perinatal and Neonatal Palliative Care is an extraordinarily comprehensive and well-written volume that should be read by every clinician caring for pregnant women and newborns. The case-oriented format of each chapter makes the volume readable and also useful as a resource in complex situations. The book spans all aspects of the clinical and compassionate care of patients, families, and caregivers. Written by experts from all clinical disciplines, including medical and surgical physicians, mental health professionals, nurses, therapists, and chaplains, it shows great respect for and gives voice to affected families and their babies.

Key Features:

• Provides comprehensive and authoritative knowledge from recognized leaders in the field
• Addresses a growing need for specific provider resources in neonatal palliative care
• Covers the clinical and emotional aspects of palliative care for babies and their families
• Lists abundant resources for effective and compassionate family-centered care
• Provides case studies with critical thinking questions
• Includes accompanying video clips of healthcare and family interactions

The following plenary speakers for 2020 have at least one chapter in the book: Beth Perry Black, Kathie Kobler, Marianne Hutti, Meghaan Nguyen, Brian Carter, Charlotte Wool, Rana Limbo. I've attached the book's table of contents as a piece of information. You'll see others listed who have been or are PLIDA leaders. We also have a group of perinatal and neonatal physicians that represent the most prolific researchers and writers in the field.

The book is available for pre-order from Springer Publishing Company. Take a look at the Table of Contents below!

Table of Contents (click here to view as a PDF)

Foreword         Jacqueline M. McGrath
Preface            Rana Limbo, Charlotte Wool, Brian Carter

SECTION 1: UNDERSTANDING PALLIATIVE CARE 

Chapter 1.       Advancing Palliative Care to Perinatal and Neonatal Settings -  Charlotte Wool and Beth Perry Black
Chapter 2.       Neonatal and Perinatal Palliative Care Services and Programs - Steven R. Leuthner and Emilie Lamberg Jones
Chapter 3.       Creating Seamlessness in Palliative Care Services - Sara Munoz-Blanco, Sue Huff, Renee D. Boss, and Christy Torkildson 

SECTION 2: CARING FOR THE WHOLE FAMILY IN PALLIATIVE CARE

Chapter 4.       Comfort in Perinatal and Neonatal Palliative Care: An Innovative Plan of Care Focused on Relational Elements - Elvira Parravicini and
                        Francis T. McCarthy
Chapter 5.       Suspending Judgment: Being With and Knowing the Family - Terri Major-Kincade, Leslie L. Harris, and Stacy C. Smith 
Chapter 6.       Helping Siblings Connect, Relate, and Say Goodbye - Meghaan R. Nguyen
Chapter 7.       Barriers to Referring Patients for Perinatal Palliative Care - Barthélémy Tosello and Marie-Ange Einaudi

SECTION 3: PLANNING AND DECISION MAKING 

Chapter 8.       Communicating Devastating News - Steven R. Leuthner, Renee D. Boss, and Brian S. Carter
Chapter 9.       Grief and Memories Begin with Diagnosis - Rana Limbo and Marie Walter
Chapter 10.    Anticipatory Guidance: Birth and Advance Care Planning - Jessica T. Fry, Natalia Henner, and Andrea Caruso
Chapter 11.    Difficulty in Predicting Survival: Genetics and Genetic Counseling - Martha Dudek and Rebecca D. Carter
Chapter 12.    “Compatible with Love”: Qualitative Analysis of Decision-making Rationale of Parents Who Continue a Pregnancy Affected by a Life-limiting
                        Fetal Condition - Jesse Wool and Charlotte Wool
Chapter 13.    Perinatal Regoaling in the Face of Serious Illness: Hopeful Thinking, Good-Parent Beliefs, and Uncertainty - Douglas L. Hill,
                       Jackelyn Y. Boyden, Chris Feudtner, David A. Munson 
Chapter 14.    Building and Sustaining Relationships During Pregnancy - Amy Kuebelbeck

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

Chapter 15.    Attending to Pain and Suffering in Palliative Care - Marc-Antoine Marquis and Antoine Payot
Chapter 16.    Managing Pain and Discomfort in the Mother - Steven D. Waldman, Melissa Liddle, Reid A. Waldman, and Kelly L. Sharp
Chapter 17.    Perinatal Palliative Care in the Context of Fetal or Neonatal Surgery - David A. Munson
Chapter 18.    Palliative Care at the Time of Unexpected Premature Delivery - Lezlie Andersen, Bethany D. Kaemingk, and Christopher A. Collura
Chapter 19.    Compassionate Extubation and Withdrawal of Life-Sustaining Therapies - Jennifer Linebarger and Meghan Tracewski

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

Chapter 20.    Lactation and Breastfeeding in the Context of Perinatal Palliative Care - Diane L. Spatz and Joanna C. M. Cole
Chapter 21.    Ten Ethical Principles for Neonatal Palliative Care - Franco Carnevale, Jacqueline van Wijlen, and Brian S. Carter
Chapter 22.    Spirituality: The Effects of Another’s Pain and Suffering on Care Providers - Darryl I. Owens and Hadley Kifner
Chapter 23.    Assessing Perinatal Grief Intensity in the Palliative Care Setting - Marianne H. Hutti and Lela A. Baker
Chapter 24.    Strategies to Honor Professional Well-Being in Perinatal and Neonatal Care - Kathie Kobler 

Appendix

Hear Dr. Denise Côté-Arsenault on perinatal palliative care at ISA2019 Madrid

PLIDA's Board Member, Dr. Denise Côté-Arsenault, will give a keynote talk on perinatal palliative care at ISA2019. Dr.Côté-Arsenault, who has a PhD in nursing from University of Rochester, is the Eloise R. Lewis Excellence Professor of Nursing at the University of North Carolina Greensboro, USA.

Read more: https://www.isa2019madrid.com/hear-dr-denise-cote-arsenault-on-perinatal-palliative-care-at-isa2019-madrid/?fbclid=IwAR1iHcBBZZp4UNfqE86ahoSrD9RbYGtKgVxztKz0oNfGsQq55dU1tXCO8Lo