Palliative Care Commons^™

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 …

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 …

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 …

Just-In-Time Decision Making: Preliminary Findings Of A Goals Of Care Rapid Response Team, Donna S Zhukovsky, Yvonne Heung, Parema Enriquez, Nelda Itzep, Zhanni Lu, Nico Nortje, Penny Stanton, Angelique Wong, Eduardo Bruera

Faculty, Staff and Student Publications

CONTEXT: The COVID-19 pandemic placed the issue of resource utilization front and center. Our comprehensive cancer center developed a Goals of Care Rapid Response Team (GOC RRT) to optimize resource utilization balanced with goal-concordant patient care.

OBJECTIVES: Primary study objective was to evaluate feasibility of the GOC RRT by describing the frequency of consultations that occurred from those requested. Secondary objectives included adherence to consultation processes in terms of core team member participation and preliminary efficacy in limiting care escalation.

METHODS: We conducted a retrospective chart review of patients referred to GOC RRT (3/23/2020-9/30/2020). Analysis was descriptive. Categorical variables were …

Low Rates Of Structured Advance Care Planning Documentation In Electronic Health Records: Results Of A Single-Center Observational Study, Adela Wu, Robert J Huang, Gabriela Ruiz Colón, Chris Zembrzuski, Chirag B Patel

Faculty, Staff and Student Publications

BACKGROUND: Proper advance care planning (ACP) documentation both improves patient care and is increasingly seen as a marker of high quality by governmental payers. The transition of most medical documentation to electronic health records (EHR) allows for ACP documents to be rapidly disseminated across diverse ambulatory practice settings. At the same time, the complexity and heterogeneity of the EHR, as well as the multiple potential storage locations for documentation, may lead to confusion and inaccessibility. There has been movement to promote structured ACP (S-ACP) documentation within the EHR.

METHODS: We performed a retrospective cohort study at a single, large university …

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 …

Hospital-Based Physicians' Intubation Decisions And Associated Mental Models When Managing A Critically And Terminally Ill Older Patient., Shannon Haliko, Julie Downs, Deepika Mohan, Robert Arnold, Amber E Barnato

Articles, Abstracts, and Reports

BACKGROUND: Variation in the intensity of acute care treatment at the end of life is influenced more strongly by hospital and provider characteristics than patient preferences.

OBJECTIVE: We sought to describe physicians' mental models (i.e., thought processes) when encountering a simulated critically and terminally ill older patient, and to compare those models based on whether their treatment plan was patient preference-concordant or preference-discordant.

METHODS: Seventy-three hospital-based physicians from 3 academic medical centers engaged in a simulated patient encounter and completed a mental model interview while watching the video recording of their encounter. We used an "expert" model to code the …

Factors Associated With End-Of-Life Planning In Huntington Disease., Nancy R Downing, Siera Goodnight, Sena Chae, Joel S Perlmutter, Michael Mccormack, Elizabeth Hahn, Stacey K Barton, Noelle Carlozzi

Rowan-Virtua School of Osteopathic Medicine Departmental Research

OBJECTIVE: Knowledge of one's gene status for adult onset conditions provides opportunity to make advance end-of-life (EOL) plans. The purposes of these analyses were to (1) determine the prevalence of EOL plans, including advance directives (ADs) among persons across 3 stages of Huntington disease (HD) and (2) examine factors associated with having ADs in this sample.

METHODS: Data are from 503 participants in the HD Quality of Life study. Participants completed an online health-related quality-of-life survey that included questions regarding EOL planning and self-reported HD symptoms. Frequencies were calculated for EOL planning by the HD stage. Bivariate analysis and logistic …

Reducing Symptom Distress In Patients With Advanced Cancer Using An E-Alert System For Caregivers: Pooled Analysis Of Two Randomized Clinical Trials, David H. Gustafson, Lori L. Dubenske, Amy K. Atwood, Ming-Yuan Chih, Roberta A. Johnson, Fiona Mctavish, Andrew Quanbeck, Roger L. Brown, James F. Cleary, Dhavan Shah

Health and Clinical Sciences Faculty Publications

Background: Symptom distress in patients toward the end of life can change rapidly. Family caregivers have the potential to help patients manage those symptoms, as well as their own stress, if they are equipped with the proper resources. Electronic health (eHealth) systems may be able to provide those resources. Very sick patients may not be able to use such systems themselves to report their symptoms but family caregivers could.

Objective: The aim of this paper was to assess the effects on cancer patient symptom distress of an eHealth system that alerts clinicians to significant changes in the patient’s symptoms, as …

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 …

Education And Referral Criteria: Impact On Oncology Referrals To Palliative Care., Barbara Reville, Joanne Reifsnyder, Deborah B Mcguire, Karen Kaiser, Abbie Santana

Department of Family & Community Medicine Faculty Papers

OBJECTIVE: To describe a quality improvement project involving education and referral criteria to influence oncology provider referrals to a palliative care service.

METHODS: A single group post-test only quasi-experimental design was used to evaluate palliative care service (PCS) referrals following an intervention consisting of a didactic presentation, education outreach visits (EOV) to key providers, and referral criteria. Data on patient demographics, cancer types, consult volume, reasons for referral, pre-consult length of stay, overall hospital stay, and discharge disposition were collected pre-intervention, then post-intervention for 7.5 months and compared.

SETTING AND SAMPLE: Attending oncologists, nurse practitioner, and house staff from the …

An Ehealth System Supporting Palliative Care For Patients With Non-Small Cell Lung Cancer: A Randomized Trial, David H. Gustafson, Lori L. Dubenske, Kang Namkoong, Robert Hawkins, Ming-Yuan Chih, Amy K. Atwood, Roberta Johnson, Abhik Bhattacharya, Cindy L. Carmack, Anne M. Traynor, Toby C. Campbell, Mary K. Buss, Ramaswamy Govindan, Joan H. Schiller, James F. Cleary

Community & Leadership Development Faculty Publications

BACKGROUND: In this study, the authors examined the effectiveness of an online support system (Comprehensive Health Enhancement Support System [CHESS]) versus the Internet in relieving physical symptom distress in patients with non-small cell lung cancer (NSCLC).

METHODS: In total, 285 informal caregiver-patient dyads were assigned randomly to receive, for up to 25 months, standard care plus training on and access to either use of the Internet and a list of Internet sites about lung cancer (the Internet arm) or CHESS (the CHESS arm). Caregivers agreed to use CHESS or the Internet and to complete bimonthly surveys; for patients, these tasks …