Palliative Care Commons^™

“We’Re Just Always There For Each Other”: Examining Social Support For African American Caregivers Of Oncology Patients, Madeleine Lee, Keisha White Makinde

Posters

No abstract provided.

Opportunities For Solid Organ Donation In The Neonatal Intensive Care Unit, Sarah Pippin, Jotishna Sharma, Ashley Sherman, Julie Weiner

Research Days

This study aims to characterize the theoretical eligibility of neonates undergoing withdrawal of care in the NICU for donation after circulatory determination of death (DCDD), with a focus on warm ischemic time (WIT) ≤ 90 minutes.

Preferred And Actual Place Of Death To Assess Goal Concordant End Of Life Care For Children With Cancer, Amy Johnson Md, Mba, Lisa Tarbell Msn, Rn, Fnp-C, Brooke Fridley Phd, Terrie Flatt Do

Research Days

This study examines disparities in pediatric end-of-life (EOL) cancer care, highlighting socioeconomic and racial inequities in concordance between preferred and actual death locations, ICU deaths, and intensive interventions, with findings emphasizing the need for earlier palliative care integration, proactive preference documentation, and tailored approaches to improve equity and family-centered care.

Symptom Documentation In Unstructured Palliative Care Notes Of Children And Adolescents With Cancer., Katherine Bernier Carney, Jacob Wilkes, Tumilara Aderibigbe, Kristin Stegenga, Holly Spraker-Perlman, Lauri A. Linder

Manuscripts, Articles, Book Chapters and Other Papers

CONTEXT: Children and adolescents with cancer experiencing complex symptoms can benefit from subspeciality palliative care. However, standardized methods of symptom documentation by pediatric palliative care teams are lacking. Understanding current approaches to symptom documentation will inform next steps to optimize symptom support.

OBJECTIVE: To explore the documentation of symptom prevalence and characteristics in unstructured clinical notes by pediatric palliative care clinicians caring for children and adolescents with cancer.

METHODS: We reviewed unstructured clinical notes documented by the pediatric palliative care team for 115 children and adolescents with cancer. Symptom-related data were abstracted and evaluated using content analysis based on the …

Moral Distress And Pediatric Palliative Care., Sunny Jeong, Angie Knackstedt, Jennifer Linebarger, Brian S. Carter

Manuscripts, Articles, Book Chapters and Other Papers

Moral distress is a complex phenomenon whereby a person feels tension, constraint, or conflict with an action or circumstance because it goes against their individual or the perceived collective (e.g., community, organizational, or professional association's) moral stance. In pediatric healthcare settings, managing and mitigating feelings of moral distress can be particularly difficult to navigate through because of the intricate dynamics between the pediatric patient, parent and/or legal guardians, and clinicians. The proactive integration of an experienced pediatric palliative care (PPC) team can be an appropriate step toward reducing clinicians feeling overwhelmed by various case-specific and team management issues that contribute …

Increasing Palliative Care Team Involvement In Pediatric Hematopoietic Stem Cell Transplant Patients, Meagan Vacek, Lisa Tarbell, Melissa List, Erin Hall, Jennifer Linebarger, Kelstan Ellis, Gina Jones, Joel Thompson

Research Days

Early implementation of palliative care in pediatric oncology is well established but its role in pediatric hematopoietic stem cell transplant (HSCT) patients is yet to be fully determined. Multiple organizations encourage palliative care involvement in HSCT patients. Our aim was to increase palliative care team consults for patients receiving HSCT for our targeted diagnosis. Though we did not achieve this aim, we were able to increase the palliative care team's involvement in the total cohort of patients undergoing HSCT.

How Neonates Die: Mortality Trends And Associations In A Level Iv Neonatal Intensive Care Unit, Erin Bolen, Ashley K. Sherman, Julie Weiner, Jotishna Sharma

Research Days

Background

Modes of neonatal mortality include withdrawal of life-sustaining interventions, non-escalation of interventions, and secondary to a code event. Mortality trends have been examined broadly, but the impact of clinical and demographic factors on the mode of neonatal mortality has yet to be evaluated. A greater understanding of this information would help guide medical decision-making and identify potential inequities. The aim is to evaluate the impact of clinical and demographic factors on the mode of neonatal death in a level IV neonatal intensive care unit (NICU).

Study Design/Methods

Data were collected via retrospective chart review of patients who died at …

Increasing Palliative Care Team Involvement In Pediatric Hematopoietic Stem Cell Transplant Patients, Meagan Vacek, Lisa Tarbell, Melissa List, Erin Hall, Jennifer Linebarger, Kelstan Ellis, Gina Jones, Joel Thompson

Posters

Background: Palliative care facilitates communication, helps with physical and psychological symptom management, and assists in goals of care and advance care planning discussions.1 Multiple organizations, including the American Academy of Pediatrics and American Society of Clinical Oncology encourage palliative care engagement and their involvement with hematopoietic stem cell transplant (HSCT) patients has been shown to be beneficial as HSCT is associated with a high degree of morbidity and possible mortality.2-3 Objective: To increase the number of PaCT consults for patients receiving HSCT for our targeted diagnoses from 48% to 75% by December 2023. Methods: Chart review was conducted for patients …

Perinatal Palliative Care In Sub-Saharan Africa: Recommendations For Practice, Future Research, And Guideline Development., Mahlet Abayneh, Sharla Rent, Peter Odion Ubuane, Brian S. Carter, Solomie Jebessa Deribessa, Betelehem B. Kassa, Atnafu Mekonnen Tekleab, Stephanie K. Kukora

Manuscripts, Articles, Book Chapters and Other Papers

Worldwide, sub-Saharan Africa has the highest burden of global neonatal mortality (43%) and neonatal mortality rate (NMR): 27 deaths per 1,000 live births. The WHO recognizes palliative care (PC) as an integral, yet underutilized, component of perinatal care for pregnancies at risk of stillbirth or early neonatal death, and for neonates with severe prematurity, birth trauma or congenital anomalies. Despite bearing a disproportionate burden of neonatal mortality, many strategies to care for dying newborns and support their families employed in high-income countries (HICs) are not available in low-and-middle-income countries (LMICs). Many institutions and professional societies in LMICs lack guidelines or …

Perinatal Palliative Care Birth Planning As Advance Care Planning., Donnamaria E. Cortezzo, Kelstan Ellis, Amy Schlegel

Manuscripts, Articles, Book Chapters and Other Papers

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 …

Increasing Palliative Care Team Involvement In Pediatric Oncology Patients, Sana Farooki

Research Days

No abstract provided.

Anticipation, Accompaniment, And A Good Death In Perinatal Care., Bryanna S. Moore, Brian S. Carter, Bryan Beaven, Katie House, Joel House

Manuscripts, Articles, Book Chapters and Other Papers

The ethics of perinatal care, and the experiences of families who receive such care, remains a nascent area of inquiry. It can be hard to see how existing "good death" constructs apply to the experiences of fetal patients and their families. In this paper, we explore two themes raised by a case at our fetal health center: anticipation and accompaniment. In this case, a mother presented to our fetal health center; her unborn son, our fetal patient, was diagnosed with life-threatening hypoplastic left heart syndrome and endocardial fibroelastosis. The parents were told that their son's life expectancy, upon birth, was …

Does Palliative Care Involvement Influence Location Of Death?, Joy L. Solano

Research Days

No abstract provided.

A Unique Model For Perinatal Palliative Care In A Level Iv Neonatal Intensive Care Unit, Kelstan L. Ellis Do, Megan Tucker Md

Research Days

No abstract provided.

A Unique Model For Palliative Care In A Level Iv Neonatal Intensive Care Unit, Kelstan L. Ellis Do, Megan Tucker, Jennifer Linebarger

Posters

This poster describes a review of the relationship between the Fetal Health Center and the Palliative Care team as the Palliative Care Team follows the patient family from prenatal through neonatal intensive care.

Does Pediatric Palliative Care Involvement Influence Location Of Death?, Joy Solano, Meghna Singh, Ashley K. Sherman, Jennifer Linebarger

Posters

This study describes the influence of a palliative care team on location of death and location of death discussions with patients/caregivers, and determines whether location of death discussions influence location of death.

With palliative care or a location of death discussion, patients were less likely to die in the PICU and more likely to die at home. Location of death discussions were more likely to occur if a palliative care team was involved.

Redirecting Care, Directing Support: End Of Life Huddles In The Intensive Care Nursery, Tiffany Willis, Sandra Ganey

Posters

No abstract provided.

More Than Medication: Perinatal Palliative Care., Brian S. Carter

Manuscripts, Articles, Book Chapters and Other Papers

No abstract provided.

Please Do Whatever It Takes To End Our Daughter's Suffering!, Stéphan Clément De Cléty, Marie Friedel, A A Eduard Verhagen, John D. Lantos, Brian S. Carter

Manuscripts, Articles, Book Chapters and Other Papers

What is the best way to care for a child with severe neurologic impairment who seems to be dying and is in intractable pain? Can we give sedation as we remove life support? Is it ethically permissible to hasten death? In the United States, 5 states have legalized assisted suicide (although only for competent adults). In Belgium and the Netherlands, euthanasia is legal for children under some circumstances. We present a case in which parents and doctors face difficult decisions about palliative care. Experts from Belgium, the Netherlands, and the United States then discuss how they would respond to such …