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 …

Deliver Us From Evil., Ethan Schimmoeller

Ambulatory and Primary Care Articles

No abstract provided.

Compassionate Communities, Māori Ageing And End-Of-Life: A Systematic Review, Melissa Carey, Kathleen Mason, Levi Fox, Tess Moeke-Maxwell, Merryn Gott

Research outputs 2022 to 2026

Background: Māori people in Aotearoa New Zealand and Australia experience significant healthcare inequity as they age and towards the end of their lives. Compassionate community approaches to ageing and end-of-life care are increasing in popularity throughout the world. However, this approach has arisen from Eurocentric knowledge systems and not from First Nations people and their communities. Objectives: This research aimed to gain insight into what the Compassionate Communities approach means for First Nations people and identify implications for Māori in Aotearoa New Zealand and Australia. A systematic literature review explored the intersection of Compassionate Communities and First Nations peoples’ perspectives …

The Nurse's Role In Curative-To-Palliative Transitions In Advanced Cancer: A Theory Synthesis Using Turner's Method, Geya George, Deborah Kirk, Davina Porock

Research outputs 2022 to 2026

Aim: This paper aims to explain the process of formulating a robust theory that comprehensively explains the nurse's role during the transition from curative to the palliative phase in advanced cancer care. Design: A qualitative theory synthesis approach was applied, utilising Turner's 9-step theory synthesis method to integrate five grounded theories and 10 qualitative studies. The Walker and Avant method of concept development and analysis further ensured rigour. Methods: Turner's theory synthesis was used to formulate a more comprehensive, testable theory from five existing grounded theories and 10 other qualitative studies that explain the nurse's role in supporting and facilitating …

A Collaborative Communities-Of-Practice Methodology For Environmental Design Research: A Case Study Application In Palliative Care, Emil E. Jonescu, Benjamin Farrell, Chamil Erik Ramanayaka, Lori Delaney, Edward Litton, Talia J. Uylaki, Gareth Watts, Bella Brigham, Frances Bellemore, Davinia Seah

Research outputs 2022 to 2026

Environmental design in palliative care settings receives increasing attention, yet methodologies for studying such environments often lack interdisciplinary integration. Traditional research designs may overlook the lived expertise of clinicians and designers. Objectives: This article describes a collaborative, cross-disciplinary communities-of-practice model developed as a methodological framework to enable effective environmental evaluation and design processes in healthcare settings. Its application is illustrated through a case study in a palliative care unit. Methods: A co-designed, multi-methods approach was developed by a team of clinicians, facility managers, and academic researchers. The methodology included a scoping review, site-specific environmental data logging (sound, temperature, lighting), and …

Improving Palliative Care Knowledge And Intentions Among Great Plains American Indians: Efficacy Results From A Randomized Clinical Trial Testing A Culture-Centric Palliative Care Message, Mary J. Isaacson, Kah Meng (Charlie) Soh, Christopher S. Wichman, Gina Johnson, Kelly Le Beaux, Semhar Michael, Lisa Sparks, Karla M. Hunter

Communication Faculty Articles and Research

Background

Methods

Results

Determining Timeframes To Death For Imminently Dying Patients: A Retrospective Cohort Study, Tricia O’Connor, Wai Man Liu, Juliane Samara, Joanne Lewis, Karen Strickland, Catherine Paterson

Research outputs 2022 to 2026

Background: Clinicians are frequently asked ‘how long’ questions at end-of-life by patients and those important to them, yet predicting timeframes to death remains uncertain, even in the last weeks and days of life. Patients and families wish to know so they can ask questions, plan, make decisions, have time to visit and say their goodbyes, and have holistic care needs met. Consequently, this necessitates a more accurate assessment of empirical data to better inform prognostication and reduce uncertainty around time until death. The aims of this study were to determine the timeframes for palliative care patients (a) between becoming comatose …

Hospital And Temporal Variations In Limitations Of Care Among Hospitalized Patients With Covid-19: A Virus Registry Retrospective Cohort Study, Nathan Mesfin, Nitesh Kumar Jain, Anwar Khedr, Hisham Mushtaq, Abbas B. Jama, Noura Attallah, Esraa Hassan, Benjamin Langworthy, Nicholas Ingraham, Juan Pablo Domecq Garces, Thoyaja Koritala, Donna Lee Armaignac, Nicholas Eugene Perkins, Katherine Belden, Vishakha Kumar, Karen Boman, Devang K. Sanghavi, Vikas Bansal, Rahul Kashyap, Rodrigo Cartin-Ceba, Abigail La Nou, Allan J. Walkey, R. Adams Dudley, Syed Anjum Khan

Division of Infectious Diseases and Environmental Medicine Faculty Papers

INTRODUCTION: Life-support limits (i.e., code status), the first step in the continuum of palliation and end-of-life (EoL) care, stem from decisions made by patients and their providers to align care near the EoL with patients' wishes. The pandemic created health care strain that may have influenced life-support limitation practices among patients with serious COVID-19. In this study, we examine variations in life-support limitations (do-not-resuscitate, DNR; do-not-intubate, DNI) depending on the hospital and period of hospitalization.

METHODS: We included all adults admitted to a hospital in the United States with COVID-19 from January 2020 to December 2021 using the VIRUS registry. …

Fatal Facial Necrotizing Fasciitis: A Case Report Highlighting Diagnostic And Therapeutic Challenges, Muhammad Sheraz Hameed, Syed Rafay Hussain Zaidi, Ali Iqbal, Muhammad Ahsan, Austin Mitchell, Azka Asad Mirza, Joshiah Gordon, Rahmat Gul Omarzai

Department of Medicine Faculty Papers

BACKGROUND: Facial Necrotizing Fasciitis (FNF) is a rare but aggressive, life-threatening infection involving the face's subcutaneous tissues and underlying musculature. It can rapidly progress to septic shock and multi-organ failure if not promptly recognized and treated. The clinical course, including severe pain, disproportionate tenderness, and systemic signs, is often the most crucial factor in diagnosis. While computed tomography (CT) can aid in identifying early signs such as soft tissue swelling and gas formation, clinical suspicion remains paramount and should not be delayed by reliance on imaging alone. Without early intervention, FNF may lead to devastating outcomes, including disfigurement, blindness, or …

Case Report: Solitary Adrenal Metastasis From Esophageal Adenocarcinoma, Riddhi Machchhar, Ahmed Dawood Al Mahrizi, Fatima Mossolem, Mariam Abdeen, Ujjwala Jain, Jyotibala Jain, Prashant Desai

Rowan-Virtua School of Osteopathic Medicine Departmental Research

INTRODUCTION: Solitary adrenal metastasis from a primary esophageal malignancy is relatively rare. While there are case reports of aggressive treatment with esophagectomy and adrenalectomy providing long-term survival, the treatment paradigm is not well defined. Complications from esophageal adenocarcinoma and its treatment can significantly impact the patient's quality of life and prognosis.

CASE PRESENTATION: Our patient was treated with systemic therapy and, although he initially had a complete response, he later experienced local disease progression along with the development of additional metastatic sites. The patient began FOLFOX, a standard chemotherapy regimen for esophageal/gastric cancer. He experienced side effects such as fever, …

Assessment Of Dry Mouth In A Palliative Population: A Comparison Between Patient-Reported Symptoms And Clinical Oral Dryness Scale Measurements, Emir Murphy Dourieu, Dominika Lisiecka, William Evans, Patricia Sheahan

Publications

The severity and impact of dry mouth in patients receiving palliative care is underreported, and assessment methods for this condition are lacking consensus. This study aimed to examine the severity of dry mouth in a palliative population as rated on a visual oral dryness scale and to compare these findings with the actual symptoms experienced by patients, as reported through both a symptom scale measure and a bother questionnaire. 40 participants took part in this cross-sectional study. The results indicated that xerostomia is a significant and debilitating symptom for many patients receiving palliative care. Daily activities such as speaking and …

Long-Term Care Services And Support In The Mountain West, 2023, Taylor Volk, Ivan Sun, Miguel Soriano Ralston, Kristian Thymianos, Caitlin J. Saladino, William E. Brown Jr.

Health

This fact sheet presents data from the American Association of Retired Persons (AARP) report, “Long-Term Services and Supports 2023 State Scorecard Report,” comparing Long-Term Services and Supports (LTSS) systems across multiple dimensions of performance for older adults, people with physical disabilities, and family caregivers for all 50 states. This fact sheet focuses on state-level LTSS system data for the Mountain West states of Arizona, Colorado, Nevada, New Mexico, and Utah.

Navigating Challenges In Palliative Care: A Survey On Asco Guideline Adherence Among Health Care Providers In Low- And Middle-Income Countries., Cristiane Decat Bergerot, Enrique Soto-Perez-De-Celis, Chadane Thompson, Rushil Patel, Jafar Al-Mondhiry, Tingting Zhang, Nathasha Dhawan, Darcy Burbage, Joseph Mccollom Do, Mazie Tsang, Ramy Sedhom, William E Rosa

PCI Publications and Projects

PURPOSE: Integrating palliative care into oncology is essential, yet disparities in access and quality persist, particularly in low- and middle-income countries (LMICs). The ASCO guidelines advocate for early, routine, interdisciplinary palliative care for patients with advanced cancer. Barriers to implementing these recommendations include resource limitations, inadequate training, and cultural perceptions. Recognizing these challenges is essential for improving equitable access to palliative care worldwide.

METHODS: This prospective survey assessed adherence to ASCO recommendations for palliative care integration among LMIC health care providers (HCPs). Participants were recruited via e-mail, social media, and a list of members involved in the ASCO Palliative Care …

Unmet Supportive Care Needs In Patients With Advanced Cancer And Its Impact On Distress, Kayla W Miranda, Benjamin L Musher, Hoda J Badr

Faculty, Staff and Students Publications

Purpose: Patients with advanced cancer endure considerable physical and emotional distress without sufficient supportive care. This cross-sectional study examined the relationship between cancer-related symptoms, supportive care needs, and distress levels in patients with advanced lung, head and neck, or gastrointestinal cancers.

Methods: 158 patients were assessed for symptom burden and distress levels using the M.D. Anderson Symptom Inventory (MDASI) and unmet needs using the Supportive Care Needs Survey (SCNS-34) within one month of treatment initiation. Pearson correlations and multiple regression analyses were used to explore associations between supportive care needs and distress.

Results: Distress levels were moderate across the study …

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 …

Prognostic Utility Of Palliative Prognostic Index In Advanced Cancer: A Systematic Review And Meta-Analysis, Si Qi Yoong, Hui Zhang, Dee Whitty, Wilson Wai San Tam, Wenru Wang, Davina Porock

Research outputs 2022 to 2026

OBJECTIVES: To evaluate the prognostic utility of Palliative Prognostic Index (PPI) scores in predicting the death of adults with advanced cancer. METHODS: A systematic review and meta-analysis were conducted. Six databases were searched for articles published from inception till 16 February 2024. Observational studies reporting time-to-event outcomes of PPI scores used in any setting, timing and score cutoffs were eligible. Participants were adults with advanced cancer residing in any setting. Random effects meta-analysis was used to pool hazard, risk, or odds ratios. Findings were narratively synthesized when meta-analysis was not possible. RESULTS: Twenty-three studies (n = 11,235 patients) were included. …

Families' Experiences Of End-Of-Life Care In An Acute Private Hospital: A Qualitative Study, Rosemary Saunders, Susan Alexander, Julie Andrew, Anne Wilkinson, Karen Gullick, Ashwini Davray, Manonita Ghosh, Karla Seaman, Michelle Gay

Research outputs 2022 to 2026

Objectives This study explored bereaved relatives' experiences of end-of-life care (EoL care) in the last 3 days in an acute private hospital in Australia. Methods An interpretative qualitative study was conducted. Semi-structured interviews with 8 bereaved relatives whose family member had died at an acute private hospital shared their experiences of the EoL care during the last 3 days of life. The transcribed interviews were analyzed using inductive thematic analysis. Results Bereaved family members had mixed experiences, and their primary concerns related to the need for improvements in support for the family; communication; and clinicians partnering with families. The need …

Early Palliative Care In Heart Failure, Meadow Stempek, Beverly Balfe, Jennifer Tantarelli

Articles, Abstracts, and Reports

No abstract provided.

Caregiver Policies In The United States: A Systematic Review, Makenna R. Green, M. Courtney Hughes, Sadia Afrin, Erin Vernon

Faculty Articles, Papers, and Other Scholarship

In the United States, there are nearly 53 million informal or unpaid caregivers, many of whom experience mental and physical stress related to their caregiving duties and increased financial responsibility. We identified federal and state informal caregiver support policies authorized by specific legislation along with their key provisions and conducted a systematic review of the academic literature related to quantitative evaluations of these policies. Twenty policies, eight academic studies, and four gray literature reports were included in the study, with half of the policies introduced since 2000. Our study criteria yielded few academic valuations tied to caregiver policies and few …

Increasing Serious Illness Conversations In Patients At High Risk Of One-Year Mortality Using Improvement Science: A Quality Improvement Study, Kanishk D. Sharma, Sandip A. Godambe, Prachi P. Chavan, Agatha Parks-Savage, Marissa Galicia-Castillo

Department of Family and Community Medicine Faculty Publications

Background: Serious illness conversation (SIC) in an important skillset for clinicians. A review of mortality meetings from an urban academic hospital highlighted the need for early engagement in SICs and advance care planning (ACP) to align medical treatments with patient-centered outcomes. The aim of this study was to increase SICs and their documentation in patients with low one-year survival probability identified by updated Charlson Comorbidity Index (CCI) scores. Methods: This was a quality improvement study with data collected pre- and post-intervention at a large urban level one trauma center in Virginia, which also serves as a primary teaching hospital to …

Extension For Community Healthcare Outcomes-Palliative Care In Africa And Quality Of Life, Symptoms, Patient Experience, And Caregiver Distress Among Patients With Cancer, Sriram Yennurajalingam, Olaitan Soyannwo, John Weru, Edwina Beryl, Henriette Burger, Esther Nafulah, Oladayo Aikomo, Adeniyi Adenipekun, Irene Botchway, Mary Ocansey

Haematology and Oncology, East Africa

Purpose: In this study, we aimed to evaluate the association between the Extension for Community Healthcare Outcomes-Palliative Care (ECHO-PC; ECHO Model–Based comprehensive educational and telementoring intervention) for health care professionals (HCPs) and change in patient-reported quality-of-life (QOL; Functional Assessment of Cancer Therapy-General [FACT-G]) among patients with advanced cancer. We also examined the association between ECHO-PC and changes in symptom distress (Edmonton Symptom Assessment Scale [ESAS]), patient experience and satisfaction, and caregiver distress scores.

Methods: ECHO-PC Clinic sessions were conducted twice a month for 1 year by an interdisciplinary team of PC clinicians at the MD Anderson Cancer Center, with participation …

An Expert Opinion On The Management Of Frailty In Heart Failure From The Australian Cardiovascular Alliance National Taskforce, Julee Mcdonagh, Caleb Ferguson, Sarah N. Hilmer, Ruth E. Hubbard, Richard I. Lindley, Andrea Driscoll, Andrew Maiorana, Lindsay Wu, John J. Atherton, Beata V. Bajorek, Bridie Carr, Kim Delbaere, Elsa Dent, Mai Duong, Louise Hickman, Ingrid Hopper, Quan Huynh, Sunita Jha, Anthony Keech, Marc Sim, Gursharan Singh, Anthony Villani, Catherine Shang, Meng Hsu, Jamie Vandenberg, Patricia Davidson

Research outputs 2022 to 2026

Approximately 50% of all adults with heart failure (HF) are classified as frail. Frailty is a clinical state of 'accelerated ageing' that complicates management and results in adverse health outcomes. Despite recommendations for frailty assessment in HF guidelines, its implementation into routine clinical practice has been slow. Further, evidence to inform models of care and pharmacological treatment for individuals with HF who are classified as frail is lacking. The complexity of management underscores the importance of tailoring models of care that can improve the focus on frailty through multidisciplinary care teams. Frailty can be reduced in some cases through the …

Left Ventricular Assist Device Destination Therapy: A Journey To Home And Beyond, Mian Z. Munir, Marissa C. Galicia-Castillo, Mia Achitoov, Amin Yehya

Department of Medicine Faculty Publications

[Case] Mr H is a 74-year-old man with history of end-stage heart failure (ESHF) secondary to hereditary transthyretin cardiac amyloidosis. Our patient underwent placement of a HeartMate II (Abbott) left ventricular assist device (LVAD) as destination therapy (DT) at an outside hospital and later came to us (Sentara Heart Hospital) for continued management because he resided in the area. Over a 2-year period, the patient experienced multiple hospital admissions for acute heart failure (HF) exacerbations, delirium, and recurrent low-flow alarms. During his last hospitalization, the palliative medicine team was consulted to facilitate goals-of-care discussions with the patient and his family, …

Advancing Person-Centred Care Through Palliative Care Wa’S Acp Workshops: The Longer-Term Impact, Gertrude G. Phiri, Emma Gunner, Philip Bafile, Davina Porock

Research outputs 2022 to 2026

Planning for end-of-life and associated decision-making is one of global significance as it impacts the quality of care in palliative care settings, including ensuring that personal preferences are honoured. It is a priority for the Australian health system to use Advance Care Planning (ACP) as it is an effective tool for individuals and their families to make their personal preferences known and implemented. The aim of this project was to evaluate the longer-term impact of the Palliative Care Western Australia (PCWA) ACP workshops. Semi-structured, open-ended questions were used to collect data from 21 participants. Reflexive thematic analysis was used to …

Home Dialysis For Latinx Individuals Living With Kidney Failure: A Qualitative Study Of Interdisciplinary Dialysis Clinicians, Katherine Rizzolo, Rebeca Gonzalez Jauregui, Jade Teakell, Michel Chonchol, Sushrut S Waikar, Lilia Cervantes

Faculty, Staff and Student Publications

Key Points:

1. Individual-level advocacy to overcome structural barriers to home dialysis is key in improving home dialysis access for Latinx individuals.

2. Acknowledging patient influences on dialysis modality choice is critical for Latinx individuals with kidney failure.

3. Early, repeated education from a trusted source is important for Latinx individuals with kidney failure.

Background: Latinx individuals experience two times the incidence of kidney failure compared with non-Latinx individuals and are less likely to use home dialysis therapies. In this qualitative study, interdisciplinary home dialysis clinicians were interviewed to understand the key factors and strategies used by clinicians to improve home dialysis uptake …

A Nurse-Driven Screening Process To Increase Icu Palliative Care Utilization, Sara L. Stock

Doctor of Nursing Practice Final Project Abstract

Purpose

A scholarly project aimed to increase palliative care by 25% for intensive care unit patients in eight weeks by integrating nurse-driven screening process into multidisciplinary rounds.

Background

Palliative care provides valuable mental, emotional, and spiritual support for patients and families. These benefits are available to any patient with a disease process causing symptoms affecting quality of life. Palliative care is falsely equated with hospice care, leading to further delay. The original referral model relied only on intensivist identification of eligibility The project was implemented in a 20-bed medical and surgical ICU in a community hospital in the Houston area. …

Conducting Comparative Effectiveness, Multisite Palliative Care And Advance Care Planning Trials: Lessons Learned And Future Directions From Pcori-Funded Studies, Areej El-Jawahri, Brittany Waterman, Susan Enguidanos, Lisa Gibbs, Victor Navarro, Maren Olsen, Jennifer Temel, Annette Totten, Corita R. Grudzen

Department of Medicine Faculty Papers

The Patient-Centered Outcomes Research Institute (PCORI) funded multiple large-scale comparative effectiveness clinical trials evaluating palliative care (PC) and advance care planning (ACP) healthcare delivery models. This article provides an overview of the most common barriers our investigative teams encountered while implementing these trials and the strategies we utilized to overcome these challenges, with particular attention to identifying research partners for multisite trials; addressing contracting and regulatory issues; creating a team governance structure; training and engaging study staff across sites; recruiting, consenting, and enrolling study participants; collecting PC and ACP data and study outcomes; and managing multisite collaborations. The goal of …

Dying With Dignity: How Can We Deliver Values-Concordant End-Of-Life Care For Immigrant Patients In The United States?, Khushi Kohli, Erin Jay G. Feliciano, Nishwant Swami, Aditya Narayan, Tej A. Patel, Bhav Jain, Puneeth Iyengar, Julie Kanevsky, Paul L. Nguyen, Edward Christopher Dee

Ateneo School of Medicine and Public Health Publications

No abstract provided.

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 …

Transformative Peer Connections: Early Experiences From The Asco Palliative Care Community Of Practice., Mazie Tsang, Cristiane Bergerot, Natasha Dhawan, Rushil Patel, Darcy Burbage, Tingting Zhang, Jafar Al-Mondhiry, Joseph Mccollom Do, Ramy Sedhom

PCI Publications and Projects

The integration of palliative care into routine oncology practice is the standard of care by most leading cancer organizations. Palliative medicine helps to deliver higher quality of care at a lower cost. However, there are barriers to implementing palliative oncology at many institutions for myriad reasons. In this article, we discuss an innovative strategy that ASCO implemented called the Communities of Practice (CoP). We share our experiences as the Palliative Care CoP and how our group seeks to develop processes and structures to collectively promote systemic change and enhance palliative care delivery for people with cancer. Our Palliative Care CoP …