Palliative Care Commons^™

Holding Hope: Empowering Parents Through Perinatal And Nicu Palliative Care, Huntington N. Cotten

Entry-Level Occupational Therapy Doctorate - Doctoral Capstone Symposium

Families receiving perinatal and neonatal Palliative Care (PC) services can experience significant emotional and practical challenges while caring for a child with medical complexities. The Care Companion, a family centered, educational resource, was created in response to survey findings indicating that rehabilitation therapists (OT, PT, and SLP) encountered challenges in providing PC services, followed by site‑specific insights that highlighted additional gaps in family support, education, and parent–infant bonding. This Occupational Therapy (OT) Capstone project was completed within a large academic pediatric medical center providing interdisciplinary PC services to families whose infants have been diagnosed with serious, life‑limiting conditions. The purpose …

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.

A Virtual Wellness Program To Enhance Well-Being For Pediatric Oncology Staff During The Covid-19 Pandemic, Karen Moody, Maria Swartz, Zachary Gresham, Martha Askins, Laura Cahalan, Pavilia Francis, Christine Geistkemper, Amy Heaton, Ruitao Lin, Melissa Melo, Alakh Rajan, Madeline Smith, Priti Tewari, Keyana R. Williams, Cheng-Han Yang, Rhonda Robert

Advances in Cancer Education and Quality Improvement

In response to the COVID-19 global health crisis and mandated social isolation, Pediatric leadership at MD Anderson Children’s Cancer Hospital was concerned for the psychological impact on its workforce and encouraged wellness programming. A grassroots wellness taskforce was assembled for the Division of Pediatrics. The task force’s primary mission was to promote the well-being of clinicians and non-clinical staff members through a broadly accessible, sustainable, and effective virtual wellness program. Guided by the Stanford Model for Professional Fulfillment, a virtual program entitled, “Weekly Wellness Webex” for Pediatrics staff was launched. Weekly Wellness Webex is a 1-hour live-streamed program with varied …

In-Person And Virtual Adaptation Of An Interprofessional Palliative Care Communications Skills Training Course For Pediatric Oncology Clinicians, Karen Moody, Clark R. Andersen, Robert M. Arnold, Julie Bradley, Allie Carter, Lauren Draper, Timothy Garrington, Jonathan B. Gill, Douglas J. Harrison, Masanori Hayashi, Amy Heaton, Cynthia Holladay, Alex Lion, Alakh Rajan, Beatriz N. Rozo, Daniel V. Runco, Shermini Saini, Laura K. Salvador, Kathryn Sutton, Verna Ferguson

Advances in Cancer Education and Quality Improvement

Introduction

Empathic communication is crucial for clinicians when discussing palliative and end-of-life (PC/EOL) care with parents of children with cancer. Unfortunately, many parents report inadequate communication at these distressing times. This study evaluates the communication skills training (CST) clinicians received to deliver a PC/EOL communication intervention as part of a multi-site randomized-controlled trial (RCT). Training was provided using an in-person format and then adapted to a virtual platform to accommodate remote learners.

Methods

Clinicians were trained in dyads (one physician and one nurse [RN] or advanced practice provider [APP]) over 3 days (in-person or virtually). Four pediatric oncology cases were …

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 …

Occupational Impact Of Caregivers In Pediatric Palliative Care, Lezlye Ramos, Karen Park, Jazminne O. Arteaga

Spring 2024 Virtual OTD Capstone Symposium

The purpose of this study is to understand the occupational impact for caregivers who had a child with a life-limiting or life-threatening condition who had received pediatric palliative care. A lack of understanding of occupational therapy’s role in end-of-life care ultimately underutilizes and under-prepares occupational therapists to work in this practice area. Becoming a medical family caregiver, neglecting personal needs and desires becomes a norm having a in-direct effect on physical and psychological health and well-being. Findings from this study suggest that it is reasonable to infer that occupational participation among caregivers is influenced by finding time for self and …

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 …

Assessment Of Social Vulnerability Impact In Care And Prognosis Of Sinonasal Cancers In The United States, Achilles A. Kanaris, David J. Fei-Zhang, Lily B. Fletcher, Stephanie S. Smith, Urjeet A. Patel, Jill N. D'Souza, Daniel C. Chelius, Anthony M. Sheyn, Jeffrey C. Rastatter

School of Medicine Faculty Publications

Key Points: Social determinants of health interactively influence sinonasal cancer care and prognosis. Housing-transportation and socioeconomic status showed the largest associations with disparities. The social vulnerability index can reveal the social determinants of sinonasal cancers.

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 …

Advantages Of Early Utilization Of Palliative Care In The Pediatric Icu: A Scoping Review, Shelby Noel Cain Bsn, Rn, Cpn, Dana Pabalate Zimmerman Msn, Rn, Charis Elizabeth Oji Msn, Aprn, Cpnp-Pc/Ac, Michelle Rickard Dnp, Cpnp-Ac

Doctor of Nursing Practice Projects

Abstract Purpose/Background Despite the increased use of palliative care in adults, only a tiny percentage of children with life-limiting illnesses or life-threatening conditions receive palliative care before dying. Palliative care has low utilization, and consults are often made late in a child’s hospitalization or diagnosis. Palliative care remains underutilized among hospitalized pediatric patients resulting in unnecessary treatments, costly and lengthy hospitalizations, and deaths occurring in the intensive care unit (ICU) rather than at home. The purpose of this scoping review is to evaluate current literature to determine the use and effect of pediatric palliative care, specifically, whether consultation of palliative …

The Use Of A Pediatric Palliative And Hospice Education Module To Enhance The Knowledge And Practice Of Emergency Room Providers, Morgan Garrett

DNP Projects

Background: Palliative and hospice care resources are underutilized in pediatric patients with chronic and life-limiting illnesses. One contributing factor is the lack of formalized education for medical providers regarding the differences and scope of palliative and hospice care models. Without adequate education about these services, providers are not able to effectively utilize otherwise available resources to provide holistic care.

Purpose: The purpose of this study was to assess the current perception of knowledge among providers pertaining to pediatric palliative and hospice care. The study investigated improvements in educational outcomes in ten categories after participation in a web-based training. A secondary …

Conference Proceedings: Select Abstracts Presented At 2021 Advocate Aurora Health Scientific Day

Journal of Patient-Centered Research and Reviews

Abstracts published within this supplement were presented at the 47th annual Advocate Aurora Health Scientific Day, held virtually on May 26, 2021. This research symposium provides a forum for disseminating results from studies conducted by faculty, fellows, residents, and other allied health professionals associated with Midwest-based health system Advocate Aurora Health, which publishes the Journal of Patient-Centered Research and Reviews.

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 …

Exploring Parental Wishes And Personhood In The Grey Zones Of Neonatal Resuscitation, Alison Lindsay

Honors Projects

The intense societal debate churning around the moral status of fetuses includes topics such as qualifications for personhood, the role of the autonomous decisions of a fetus’ mother, and the obligations of society to protect fetuses. This paper analyzes extending this discussion to newborns in five sections. The first section presents a literature review of responses to a philosophical paper about the respective interests of parents and fetuses and newborns, elaborating on aspects of personhood and parental decision-making. The second section presents a literature review of medical and nursing discussion around resuscitation for extremely premature newborns, focusing on similar evaluations …

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.

Search Strategy For "The Benefits, Burdens, And Risks Of Participation In Pediatric Palliative Care And End Of Life Research: A Systematic Review", Pamela S. Hinds, Vanessa N. Madrigal, Cynthia J. Bell, Cynthia M. Schmidt, Amy R. Newman, Kim Mooney-Doyle, Jessica L. Spruit, Tessie October, Christine A. Fortney, Melissa Kurtz Uveges, Kitty Montgomery, Katherine Patterson Kelly, Meaghann S. Weaver

Search Strategies: Leon S. McGoogan Health Sciences Library

No abstract provided.

Needs Assessment For Palliative Care In Pediatric Oncology: An Integrative Literature Review, Tabitha Negrete

Grace Peterson Nursing Research Colloquium

Abstract

Background: Cancer is the leading cause of non-accidental death in childhood. Cancer is the primary disease for which pediatric palliative care services are utilized worldwide. Improvement in pediatric palliative care has been identified as an ongoing research priority. There are still significant gaps in current knowledge of pediatric palliative care because education has not been integrated into curriculum and clinical experiences.

Objectives: The purpose of this integrative literature review aims to provide a comprehensive review of current research about the need of nursing education on palliative care for long-term care in pediatric oncology.

Methods: This integrative literature review focused …

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 …

Palliative Care For The Medically Complex Child, Melanie Anspacher, Neha H. Shah

E-Learning Modules

**From the AAMC website: Contains time-sensitive information that will likely be inaccurate, obsolete, or irrelevant by August 12, 2016**

Children with special health care needs are increasingly prevalent in US hospitals. The pediatric hospitalist is often the primary provider of inpatient care for these patients. The Complex Care Curriculum was developed to provide a multi-modal educational curriculum for providers with the overall goal of improving inpatient care for this population. The curriculum is composed primarily of a series of topic-specific learning modules. This particular resource was created to provide pediatricians with educational materials related to palliative care for the medically …