Palliative Care Commons^™

Suicidality, Self-Neglect, And Medical Refusal In Advanced Illness: An Ethical Case Report, Austin Supak, Sarah Greene, Madeline Adelman, Whitney Snyders

Continental and Mountain Divisions GME Resarch Day 2026

No abstract provided.

A Puzzling Case Of Visual Disturbances Leads To A Fatal Neurodegenerative Diagnosis, Courtney J. Austin, Aaron Carrillo, Jennifer Rojas Huen, Victoria Parada

Research Colloquium

Background: Creutzfeldt-Jakob disease (CJD) is a rare neurodegenerative disease in which early diagnosis is complicated by the presence of early non-specific and atypical presentations. Sporadic CJD (sCJD), the most common type of CJD, is caused by the spread of a disease-forming prion known as PrPSc. PrPSc multiplies and binds to the normal form of prion, or PrP, converting it to an abnormal, structurally altered disease form that spreads throughout the brain. sCJD can initially present with six different phenotypes: cognitive, affective, classic, visual (Heidenhain variant), atactic (Oppenheimer-Brownell variant), and indeterminate. The classic presentation of CJD includes rapidly progressive dementia with …

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 …

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 …

Finding Grace With Advanced Cirrhosis: Improving Palliative Care Consult Utilization Final Results, Saud Khan, Samuel Kwiatkowski, Anjali Lukose, Amanda T. Rivera Miranda, Priscilla Phan, Ashwini Komarla, Sabiha Kazi, Diana Treu, Amar Mandalia

North Florida Division GME Research Day 2025

No abstract provided.

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 …

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 …

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 …

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 …

Perspectives From Patients With Chronic Lung Disease On A Telehealth-Facilitated Integrated Palliative Care Model: A Qualitative Content Analysis Study, Jeannette Kates, Carrie Tompkins Stricker, Kristin L. Rising, Alexzandra Gentsch, Ellen Solomon, Victoria Powers, Venise J. Salcedo, Brooke Worster

Department of Medicine Faculty Papers

BACKGROUND: Chronic lung disease affects nearly 37 million Americans and often results in significant quality of life impairment and healthcare burden. Despite guidelines calling for palliative care (PC) integration into pulmonary care as a vital part of chronic lung disease management, existing PC models have limited access and lack scalability. Use of telehealth to provide PC offers a potential solution to these barriers. This study explored perceptions of patients with chronic lung disease regarding a telehealth integrated palliative care (TIPC) model, with plans to use findings to inform development of an intervention protocol for future testing.

METHODS: For this qualitative …

Racial Disparities In Palliative Care Utilization In The Covid-19 Pandemic, Margaret S. Bove, Benjamin Huber, Myles Hardeman, Daniel Harris, Areeba Jawed, Amber Comer

Medical Student Research Symposium

BACKGROUND

Palliative care is a vital resource for the critically or terminally ill. It has myriad benefits such as improved quality of life, reduced depressive symptoms, and decreased scarce resource utilization. Self-identified Black/African patients, however, are less likely to utilize advanced care directives or engage in hospice/comfort care measures and are more likely to prefer intensive treatment at the end of life. There is no research, however, on how the COVID-19 pandemic may have affected these trends.

METHODS

A retrospective cohort study of patients who experienced in hospital mortality or in hospital hospice due to COVID-19 between March 2020 – …

The Role Of Palliative Care Consultation In Withdrawal Of Life-Sustaining Treatment Among Icu Patients Receiving Veno-Venous Extracorporeal Membrane Oxygenation (Vv-Ecmo): A Retrospective Case-Control Study, Gabriel Patarroyo-Aponte, Saeed Shoar, Deptmer M Ashley, Ali Noorbaksh, Dev Patel, Alisha Y Young, Bindu H Akkanti, Mark T Warner, Maria M Patarroyo-Aponte, Biswajit Kar, Igor D Gregoric, Caroline Ha, Bela Patel

Faculty, Staff and Student Publications

Background: Extracorporeal membrane oxygenation (ECMO) has extended the survivability of critically ill patients beyond their unsupported prognosis and has widened the timeframe for making an informed decision about the goal of care. However, an extended time window for survival does not necessarily translate into a better outcome and the sustaining treatment is ultimately withdrawn in many patients. Emerging evidence has implicated the determining role of palliative care consult (PCC) in direction of the care that critically ill patients receive. Objective: To evaluate the impact of PCC in withdrawal of life-sustaining treatment (WOLST) among critically ill patients, who were placed on …

The Role Of Peroxisome Proliferator-Activated Receptors In The Development And Physiology Of Gametes And Preimplantation Embryos, Gabriel Patarroyo-Aponte, Saeed Shoar, Deptmer M Ashley, Ali Noorbaksh, Dev Patel, Alisha Y Young, Bindu H Akkanti, Mark T Warner, Maria M Patarroyo-Aponte, Biswajit Kar, Igor D Gregoric, Caroline Ha, Bela Patel

Faculty, Staff and Student Publications

Background: Extracorporeal membrane oxygenation (ECMO) has extended the survivability of critically ill patients beyond their unsupported prognosis and has widened the timeframe for making an informed decision about the goal of care. However, an extended time window for survival does not necessarily translate into a better outcome and the sustaining treatment is ultimately withdrawn in many patients. Emerging evidence has implicated the determining role of palliative care consult (PCC) in direction of the care that critically ill patients receive. Objective: To evaluate the impact of PCC in withdrawal of life-sustaining treatment (WOLST) among critically ill patients, who were placed on …

The Differences In Code Status Conversation Approaches Reported By Emergency Medicine And Palliative Care Clinicians: A Mixed-Method Study, Kei Ouchi, Thidathit Prachanukool, Emily L Aaronson, Joshua R Lakin, Masaya Higuchi, Shan W Liu, Maura Kennedy, Anna C Revette, Anita N Chary, Jenson Kaithamattam, Brandon Lee, Thanh H Neville, Mohammad A Hasdianda, Rebecca Sudore, Mara A Schonberg, James A Tulsky, Susan D Block

Faculty, Staff and Students Publications

BACKGROUND: During acute health deterioration, emergency medicine and palliative care clinicians routinely discuss code status (e.g., shared decision making about mechanical ventilation) with seriously ill patients. Little is known about their approaches. We sought to elucidate how code status conversations are conducted by emergency medicine and palliative care clinicians and why their approaches are different.

METHODS: We conducted a sequential-explanatory, mixed-method study in three large academic medical centers in the Northeastern United States. Attending physicians and advanced practice providers working in emergency medicine and palliative care were eligible. Among the survey respondents, we purposefully sampled the participants for follow-up interviews. …

National Survey On The Availability Of Oncology Palliative Care Services At Tertiary General And Cancer Hospitals In China, Xiaomei Li, Xin Shelley Wang, Haili Huang, Miao Liu, Yinan Wu, Jiaojiao Qiu, Boran Zhang, Linhong Cui, David Hui

Faculty, Staff and Student Publications

Background: This nationwide survey studied the level of palliative care (PC) access for Chinese patients with cancer among cancer care providers either in tertiary general hospitals or cancer hospitals in China.

Methods: Using a probability-proportionate-to-size method, we identified local tertiary general hospitals with oncology departments to match cancer hospitals at the same geographic area. A PC program leader or a designee at each hospital reported available PC services, including staffing, inpatient and outpatient services, education, and research, with most questions adapted from a previous national survey on PC. The primary outcome was availability of a PC service.

Results: Most responders …

Characteristics Of Patients Diagnosed With Pancreatic Cancer Who Access Palliative Care: An Observational Study, Nadia N Khan, Sue M Evans, Liane J Ioannou, Charles H C Pilgrim, Megan Blanchard, Barbara Daveson, Jennifer Philip, John R Zalcberg, Luc Te Marvelde

Faculty, Staff and Student Publications

PURPOSE: Despite the benefits of palliative care (PC) in pancreatic cancer, little is known about patients who access PC. This observational study examines the characteristics of patients with pancreatic cancer at their first episode of PC.

METHODS: First-time, specialist PC episodes captured through the Palliative Care Outcomes Collaboration (PCOC), in Victoria, Australia between 2014 and 2020, for pancreatic cancer, were identified. Multivariable logistic regression analyses examined the impact of patient- and service-level characteristics on symptom burden (measured through patient-reported outcome measures and clinician-rated scores) at first PC episode.

RESULTS: Of 2890 eligible episodes, 45% began when the patient was deteriorating …

Palliative Medicine Integration In The Usa: Cancer Centre Executives’ Attitudes, Joseph Chen, Allison De La Rosa, Dejian Lai, Rony Dev, Frances Lee Revere, David Lairson, Paige Wermuth, Eduardo Bruera, David Hui

Faculty, Staff and Student Publications

OBJECTIVES: To compare cancer centre (CC) executives' attitudes towards palliative care between National Cancer Institute-designated CCs (NCI-CCs) and non-NCI-designated CCs (non-NCI-CCs) in 2018 and to examine the changes in attitudes and beliefs between 2009 and 2018.

METHODS: CC chief executives at all NCI-CCs and a random sample of non-NCI-CCs were surveyed from April to August 2018. Twelve questions examined the executives' attitudes towards palliative care integration, perceived barriers and self-assessments. The primary outcome was agreement on the statement 'a stronger integration of palliative care services into oncology practice will benefit patients at my institution.' Survey findings from 2018 were compared …

Integrating Palliative Care In A Family Nurse Practitioner Curricula - Post Survey Data, Betty Lang, Susan Montgomery, Ellen P. Moore, Amanda Townsend

MSN Project Data

There is a growing need to integrate Palliative Care in Family Nurse Practitioner (FNP) curricula. Due to increasing costs in an already overstretched healthcare system, a large portion of primary care is delivered by FNPs, often to older or sicker patients. Therefore, it is imperative that FNPs receive formal educational and professional preparation regarding palliative care resources. One of the Core concepts presented by The American Association of Colleges of Nursing's Essentials: Core Concepts for Professional Nursing Education (2021) is palliative care, as are hospice and supportive care. Graduate Competencies and Recommendations for Educating nursing Students (G-CARES) further describe advanced-level …

Literature Review: Palliative Care In The Emergency Department, Alice Chang, James Espinosa, Alan Lucerna, Neelesh Parikh

Rowan-Virtua Research Day

With current medical advances, our patient population continues to age. This poses new challenges for healthcare practitioners to provide for elderly patients with complex and multifactorial medical needs. Particularly, this is a growing challenge in the emergency department (ED), where patients often present towards the last months of their lives. A study conducted by UCSF indicates 75% of patients in their last 6 month of life visited the ED. 56% to 99% of older adults do not have advance directives available at ED presentation. Therefore, ED visits towards the end of life is an opportune teaching moment for physicians to …

Promotion Of Most Forms Through Education About Importance Of Advance Care Planning In Seriously Ill Patients, Nidhi More

DNP Projects

Abstract

Purpose: To establish the importance of early Advance Care Planning (ACP) and improve the utilization of Medical Orders for Scope of Treatment (MOST) forms in seriously ill patients by educating providers and nurses to identify patients who meet specified criteria. The goals of this intervention are reduction of readmissions and better quality of life for this patient population.

Methods: A quasi-experimental design was used for evaluation of an Educational intervention to promote MOST forms, Advance Directives (AD) and Palliative Care (PC) consults. A retrospective and prospective chart review was conducted to determine the number of patients who met criteria …

Bhsf Palliative Care: Covid-19 Response, Ana Viamonte Ros, Nivia Ruiz, Brenda Daniels, Mayra Villalba

Nursing & Health Sciences Research Journal

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 …

Pharmacologic And Nonpharmacologic Approaches To Palliative Care In Oncology, Daniel Powell, Sunitha Johns, Samia Alam, Isabel E. Cwikla, Brendan Rasor, David W. Koh

Pharmacy and Wellness Review

In recent decades, few fields have changed as drastically as oncology. A wide variety of approaches must be taken in order to best care for cancer patients. With the globalization of health care and modern society, nontraditional management of cancer symptoms is once again increasing in popularity. The National Comprehensive Cancer Network (NCCN) has also recently updated their palliative care guidelines. These guidelines provide a detailed approach for the care of a wide range of cancer patients but largely focus on traditional pharmacotherapy. An increasing number of studies are being conducted on nonpharmacologic approaches to care for patients with cancer. …

Utilization Of Evidence-Based Telehealth For Routine Follow-Up Visits In Outpatient Palliative Care, Kori Fitzgerald Bsn, Rn, Phn, Fnp/Dnp Student

Doctor of Nursing Practice Final Manuscripts

Title: Utilization of Telehealth for Palliative Care Follow-up Visits

Background: A vital part of cancer management is the implementation and integration of palliative care, to prevent and relieve suffering and to improve quality of life for patients with serious chronic illness. However, access to palliative care services continues to be inadequate. There is a nationwide shortage of skilled palliative providers and the supply is insufficient to meet the growing demand.

Purpose of Project: Implementing telehealth visits with palliative care patients with advanced cancer at the UCSD Moores Cancer Center has the potential to maintain patient satisfaction with …

Impact Of Palliative Care Consultations For Patients Admitted To Maine Medical Center With Acute Exacerbations Of Copd, Benjamin Jarrett, Isabella Strumpf, Rebecca Hutchinson

MaineHealth Maine Medical Center

Background and purpose:

• COPD is the 3rd leading cause of death.

• Specialty Palliative Care (PC) is underutilized in COPD patients.

•PC involvement has been shown to improve quality of life and satisfaction with overall care.

• We sought to evaluate the association of receipt of palliative medicine consultation during an admission for acute exacerbation of COPD with a documented Goals of Care conversations and/or presence of an advanced directive and/or POLST.

Northern New England Palliative Care Teleconsult Research Laboratory, Ava Daruvala, Rebecca N. Hutchinson, Eric Anderson, Paul Han

MaineHealth Maine Medical Center

Introduction:

• Palliative care (PC) is an approach that improves the quality of life of patients and their families.

• Delivery of PC via telehealth technology (tele-PC) has been proposed as a solution to increase access to PC in rural areas. • The feasibility, acceptability, and effectiveness of applying telehealth technology to PC remains unknown.

• The overarching purpose of the proposed study is to 1) evaluate the feasibility and acceptability of a tele-PC intervention for seriously ill patients, and 2) generate pilot data to better understand provider-patient communication during tele-PC consultations

Musician As Physician: Interwoven Artistry For Complex, Cancer Pain Management, Douglas E. Brandoff

Crossroads of Music and Medicine

The author, who is both a classical musician and a physician, reflects on how to interweave the skills he has from experience in both realms to become a more "complete" palliative care physician when working with patients.

Clinicians’ Perspectives On Adopting A Lung Cancer Palliative Care Intervention, Shaunna Siler

Loma Linda University Electronic Theses, Dissertations & Projects

Despite the significant progress in implementing palliative care interventions for cancer patients, few intervention studies seek healthcare clinicians’ input prior to implementation. The purpose of this research was then to explore palliative care and oncology clinicians’ (e.g., physicians, nurses, social workers, and chaplains) perspectives on current challenges and useful practices in meeting the quality of life needs of lung cancer patients and family caregivers, and to increase the likelihood of the adoption of a palliative care intervention based on understanding current trends in palliative care delivery at three outpatient oncology sites. The conceptual framework used for this study was the …

Physician Orders For Life-Sustaining Treatment (Polst) Utilization In A Skilled Nursing Facility: An Educational Quality Initiative, Ryan Hazley Bsn, Rn, Dnp Student, Karl Steinberg Md, Cmd, Joseph Burkard Dnsc, Crna

Doctor of Nursing Practice Final Manuscripts

According to expert reports and recent research, frequent clinician-patient conversations about individual end-of-life preferences are necessary to avoid unwanted treatment and to ensure that desired treatments are received. The ongoing diffusion of Physician Orders for Life-Sustaining Treatment (POLST) educational initiatives in skilled nursing facilities (SNFs) are vital to success of California’s POLST program, which is now recognized as only 1 of 3 mature POLST programs in the country. The purpose of this evidence-based practice project was to answer the question: Among staff in a skilled nursing facility, does implementing a formal POLST education program compared to current practice improve staff …

A Systematic Review - The Effect Of Hospice And Palliative Care, Justin M. Brown, David J. Havener, Jeffrey T. Byrne

Williams Honors College, Honors Research Projects

Many older adults nearing death experience unnecessarily invasive and costly healthcare treatments, often causing more harm than good. Hospice and palliative care interventions offer a possible solution to this problem by prioritizing high-quality and cost-effective care with a strong focus on comfort and satisfaction. The authors of this paper seek to answer the following question: Do hospice and palliative care interventions directed toward older adults at the end of life improve quality of life, cost of care, and satisfaction? This paper thoroughly reviews and critically appraises existing research related to the effect of hospice and palliative care directed toward older …