Palliative Care Commons^™

Barriers To Palliative Care Access In Rural South Dakota: A Policy And System-Level Analysis, Harshavardhan Kadarkaraisamy

Honors Thesis

Palliative care improves the quality of life for people living with serious illness. It helps by addressing symptoms, improving communication, and providing mental, physical, and spiritual support. However, in South Dakota access to palliative care is limited in rural areas. These challenges include geographic isolation, workforce shortages, healthcare infrastructure, reimbursement, and misunderstandings about palliative care. This thesis examines the key policy barriers that limit access to palliative care in rural South Dakota. This work involves engaging with South Dakota-specific literature, rural health research, policy sources, community education, telehealth expansion, and policy reform. By focusing on the rural context of South …

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 …

Integrating Positive Psychology And Spirituality To Foster Meaning And Well-Being In Older Adults, Crystal Morris

Adultspan Journal

This perspective article explores the integration of positive psychology interventions (PPIs) and spirituality in therapy to foster meaning and well-being in older adults. It highlights exercises such as the positive introduction, positive legacy, character strengths, mindfulness, mindful-based yoga, and a manifestation prayer journaling. The interventions presented are tools to support older adults that may experience depression, difficult life transitions, and the search for renewed meaning. Therapists who integrate PPIs and spirituality into therapy can promote a holistic, non-pathological approach to treatment.

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.

Ethical Considerations Of Percutaneous Endoscopic Gastrostomy Tube Placement In A Patient With Creutzfeldt-Jakob Disease And Advanced Dementia, Toni Habib, Niamh Siobhán Mulrooney, Yisroel Grabie, Mohammad Maruf, Sophia Kasapira

HCA Healthcare Journal of Medicine

Background

Creutzfeldt-Jakob disease (CJD) is a rapidly progressive neurodegenerative condition that is not easily diagnosed and has no curative treatments available, essentially requiring palliative measures, including tube feeding. Nonetheless, data shows that the endoscope used for percutaneous endoscopic gastrostomy (PEG) tube insertion can be a vector for CJD transmission.

Case Presentation

We discuss the case of an elderly patient diagnosed with CJD, requiring tube feeding. Multiple specialists were consulted, and they were unable to reach an agreement on the best approach. Eventually, the hospital ethics committee intervened, and the family agreed to comfort measures only. This case report sheds light …

Exploring The Reassessment Of Palliative Home Care Clients: A Mixed Methods Study, Maya Canham

Theses and Dissertations (Comprehensive)

Introduction: The timely reassessment of clients receiving palliative home care (HC) is critical for supporting clinicians with care planning and service delivery. However, there is little information on the frequency of reassessments and factors driving reassessment in palliative HC clients.

Objectives: The objectives of this study were to: (i) determine the proportion of palliative HC clients reassessed with the interRAI Palliative Care (interRAI PC) instrument, (ii) calculate the average interRAI PC reassessment interval, (iii) identify the key factors driving interRAI PC reassessment at various intervals, and (iv) explore the factors that influence palliative HC clinicians to reassess their clients in …

Providing End-Of-Life Counseling: A Narrative Inquiry, Carol Hecht, Sibyl West

Adultspan Journal

This qualitative study aimed to address the gap in the research related to end-of-life counseling by exploring the experiences of counselors working with clients at end of life. While counseling literature and education are lacking regarding end of life, many counselors will work alongside clients approaching death. The purpose of this study was twofold: (a) to better understand the nuanced experiences of counselors providing end-of-life counseling and (b) to explore the supports and preparations helpful for counselors to provide end-of-life counseling. A narrative approach, using the Listening Guide (Gilligan, 2015), was employed to analyze and present the stories of three …

Considerations Of Medicare Telehealth Services With Older Adults, Sonah Kho, Amanda Dediego

Adultspan Journal

The onset of the COVID-19 pandemic set in motion a rapid expansion of mental health services offered via telehealth. With this rapid expansion came the need to examine how policy and practice should be shaped in a future where telehealth is considered common in counseling practice. For counselors to understand how to support older adult clients in using telehealth services, they must understand telehealth policy. Following the eligibility of licensed counselors to participate in Medicare, counselors need to stay abreast of regulatory changes regarding restrictions and regulations on use of telehealth for mental and behavioral health services, including video and …

Emotion Regulation Strategies And Perceived Emotional Intelligence: The Effect Of Age., Iwanna Sepiadou

Adultspan Journal

The aim of this study was to investigate the relationship between perceived emotional intelligence and the reported use of cognitive reappraisal and expressive suppression. We also investigated the possible effects of age on the aforementioned variables. The total sample consisted of 379 people (158 men, 220 women, 1 unreported). Across participants, 273 were young (20-39 years old) and 106 were middle-aged (40-65 years old). We found statistically significant positive correlations between the dimensions of perceived emotional intelligence and the reported use of cognitive reappraisal and negative primarily correlations between the dimensions of perceived emotional intelligence and the reported use of …

Effects Of Family Dignity Interventions Combined With Standard Palliative Care On Family Adaptability, Cohesion, And Anticipatory Grief In Adult Advanced Cancer Survivors And Their Family Caregivers: A Randomized Controlled Trial, Nannan Wang, Kun Wang, Xinyu Lu, Shuyu Zhang, Xuhan Sun, Yuxi Zhang

Faculty, Staff and Student Publications

BACKGROUND: Family involvement and comfort are equally important in palliative care. Dignity undertook a new meaning and novel challenges as a result of restrictions on visits and companionship during the pandemic. Family-centered family dignity interventions have been shown to be effective in increasing patients' sense of dignity, increasing levels of hope, and reducing psychological distress; however, the effectiveness in enhancing family adaptability and intimacy in the survivor-caregiver binary and reducing expected grief have been inconclusive.

OBJECTIVES: The primary objective of this study was to assess the efficacy of family dignity interventions on family adaptability and cohesion. The secondary objective was …

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. …

Empirical Insights Into Survivorship Care: A Cross-Sectional Study Of Coc Accredited Hospitals In Kentucky, Amanda M. Beckett

Theses and Dissertations--Public Health (M.P.H. & Dr.P.H.)

ABSTRACT

Background:

Cancer survivorship care programs play a vital role in supporting cancer survivors and improving their quality of life. Understanding the landscape of survivorship and the potential barriers is key to optimizing care delivery.

Methods:

The primary purpose of this cross-sectional study was to explore existing cancer survivorship care programs offered by Commission on Cancer (CoC) accredited hospitals in Kentucky. Data from the Markey Cancer Affiliate Network (MCCAN) from 2022 through 2023 was analyzed. Variables included hospital characteristics such as rural code, types of survivorship services offered, and reported barriers to these services.

Results:

Analysis of n=19 CoC facilities …

The Unequal Distribution Of Social Risk For Black Men Across The Life-Span. A Novel Framework., Waleed Y. Sami

Adultspan Journal

This conceptual overview offers a comprehensive overview of systemic pathways that negatively impact the mental health of Black Men throughout their lives. Our argument highlights the importance for counselors and mental health professionals to utilize a thorough social risk assessment that considers these pathways in order to effectively address the mental health needs of Black Men while fostering positive working relationships. This overview strongly advocates for the use of context and structural determinants when evaluating mental health symptoms. Without an appropriate understanding of social risk and determinants, counselors may inadvertently perpetuate disparities by decontextualizing symptomology, and reproducing racist discourse.

Discordant Cardiopulmonary Resuscitation At An Academic Midwest Medical Center- Prevalence And Solutions, Jeremy Payne, Anne Skinner, David Gannon, Jenenne A. Geske

Graduate Medical Education Research Journal

Background: Code status orders are important features of patient-centered clinical decisions, patient autonomy, and end-of-life care. Despite proper documentation of “do not resuscitate” (DNR) code status, hospitalized patients may be subjected to cardiopulmonary resuscitation (CPR) efforts that go against their wishes.

Purpose: The objective of this study was to identify and describe the population of hospitalized patients receiving discordant resuscitation efforts at a Midwest academic medical center utilizing electronic health records (EHR).

Method: The study included EHR records between 01/01/2011 and 01/01/2021 for hospitalized patients 19 years and older who experienced cardiac arrest (ICD-10 I46) and were documented as DNR. …

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 …

Asking The Question ‘What Matters To You?’ In A London Intensive Care Unit, Harriet Pittaway, Laura White, Karen Turner, Angelique Mcgillivary

Journal of Patient-Centered Research and Reviews

Purpose: At the heart of the paradigm shift in approach to patient care from paternalism toward shared decision-making lies the international “What Matters To You?” (WMTY) movement. However, WMTY principles are not frequently applied to the critical care setting. The aim of this quality improvement project work was to design and integrate a tool for all patients admitted to the intensive care unit (ICU) that helped answer WMTY.

Methods: Using Plan-Do-Study-Act (PDSA) methodology across 8 cycles, a multidisciplinary team designed and integrated a bedside poster into the ICU. Quantitative and qualitative data were collected via a bedside audit process on …

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 …

Barriers To The Use Of Palliative And Hospice Care Among The Latino Population, Diana Ramirez

Electronic Theses, Projects, and Dissertations

Patients suffering from irreversible and terminal illnesses may benefit from the services provided by Palliative and Hospice Care to control any symptom burden and assist in navigating complex medical decisions. Many patients may express hesitation in accepting and enrolling to this service due to misconceptions. Language barriers may add an additional layer of complexity. This study explored the challenges Palliative Care providers encounter when introducing concept of hospice to Spanish-speaking patients their families for the first time. This study implemented qualitative research methods by using semi-structured one-on-one interviews. Ten members of an In-patient Palliative Care Team at a University Hospital …

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 …

Alzheimer's And Patient Caregiver Burnout: A Review Of The Literature, Madeline Hekeler

James Madison Undergraduate Research Journal (JMURJ)

The term “silent epidemic” is fitting for Alzheimer’s disease (AD), as its negative impact is widely felt but rarely discussed. Burnout among AD caregivers has become an epidemic of its own as caregivers experience an increase in health risks, stress, and financial burden. This literature review focuses on caregiver burnout and how imperative it is that caregivers are better supported in their role. Researchers have developed instruments to assess and intervene in caregiver burnout that have shown effectiveness among caregivers and their families.Nevertheless, further longitudinal research is warranted regarding more effective interventions, including stress management and social support mechanisms.

Clinical Characteristics And Prognostic Factors Of Atrial Fibrillation At A Tertiary Center Of Pakistan – From A South-Asian Perspective – A Cross-Sectional Study, Intisar Ahmed, Aiysha Nasir, Pirbhat Shams, Hunaina Shahab, Muhammad Hassan, Faryal Subhani, Ghurfan Adnan, Awais Farhad, Aamir Hameed, Yawer Saeed

Section of Cardiology

Background: There is lack of large data from South-Asian region on atrial fibrillation and it is imperative that clinical presentation, prognostic factors, management pursued, and outcomes are known for this part of the world. Once collective evidence for the region is known, region-specific guidelines can be laid forward.
Objectives: To evaluate clinical characteristics and prognostic factors of atrial fibrillation at a tertiary care center of Pakistan.
Methods: This was a retrospective study conducted at a tertiary care center of Pakistan. Period of study ranged from July-December 2018. All hospitalized patients who were admitted with atrial fibrillation as a primary or …

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.

Social Networks And Barriers To Art Adherence Among Young Adults (18–24 Years) Living With Hiv At Selected Primary Health Facilities Of South-Western Uganda: A Qualitative Study, Noble Ajuna, Brian Tumusiime, Joseph Amanya, Sharon Awori, Godfrey Z. Rukundo, John Baptist Asiimwe

School of Nursing & Midwifery, East Africa

Background

Young adults living with HIV (YALWH) struggle to maintain high levels of adherence to antiretroviral therapy (ART) because of numerous barriers. This study describes the social networks of YALWH (18–24 years), their barriers to ART adherence, and the perceived role of social networks in overcoming those barriers.

Methods

This study used a qualitative descriptive research design. Twenty-three (23) YALWH who were on ART for a period of greater than one (1) month and had consented to participate in the study were purposively selected from two primary health care facilities in southwestern Uganda. We held four (4) focus group discussions …

Palliative Care And Life-Sustaining/Local Procedures In Colorectal Cancer In The United States Hospitals: A Ten-Year Perspective, Zahra Mojtahedi, Ja Seol Koo, Ji Yoo, Pearl Kim, Hee-Taik Kang, Jinwook Hwang, Moon Kyung Joo, Jay J. Shen

School of Medicine Faculty Research

Background: In recent years, palliative care utilization has been increasing while life-sustaining/local procedures have been declining at the end of life. Palliative care utilization widely varies based on tumor type. Limited information is available on inpatient palliative care in colorectal cancer. Aims: This study investigated inpatient palliative care utilization and its association with patient demographics, hospital charges, and procedures among colorectal cancer patients admitted to US hospitals between 2008 and 2017. Receipt of life-sustaining and local procedures and surgeries were also investigated during the ten years. Methods: Data were extracted from the National inpatient sample (NIS) database containing de-identified information …

Inpatient Palliative Care Is Less Utilized In Rare, Fatal Extrahepatic Cholangiocarcinoma: A Ten-Year National Perspective, Zahra Mojtahedi, Ji Won Yoo, Karen Callahan, Neeraj Bhandari, Donghui Lou, Katayoon Ghodsi, Jay J. Shen

School of Medicine Faculty Research

Background—Extrahepatic cholangiocarcinoma (ECC) is a rare, morbid, fatal cancer with distressing symptoms. Maintaining a high quality of life while reducing hospital charges and length of stay (LOS) for the end-of-life period remains a major challenge for the healthcare system. Palliative care utilization has been shown to address these challenges; moreover, its use has increased in recent years among cancer patients. However, the utilization of palliative care in rare cancers, such as ECC, has not yet been explored. Objectives—To investigate palliative care utilization among ECC patients admitted to US hospitals between 2007 and 2016 and its association with patient demographics, clinical …

Catholic Terminal Sedation-A New Framework For Providing Terminal Palliative Sedation As A Requirement In Catholic Healthcare Organizations, Noah Dimas

Graduate Student Research Symposium

The present attitudes surrounding death and dying in the United States have been trending toward the acceptance of so-called “Assisted Death” interventions at the end-of-life (EoL), specifically Physician-Assisted Suicide. The acceptance of these interventions is rooted in the notion of autonomy within the American culture of medicine that generally states a patient is allowed to request whatever medical interventions they wish. As such, legislative bodies around the United States have begun to legalize Assisted Death in response to the regularly cited desire to die peacefully and without pain from an expected terminal illness. However, for Catholic healthcare organizations, there is …

Partnership Between Islam And Palliative Care At Swedish Health Services (First Hill And Cherry Hill), Hodo Mohamud

Articles, Abstracts, and Reports

INTRODUCTION  The spiritual practice of Islam is considered one of the three major monotheistic religions. There is minimal research about Palliative care and Muslim patients in both Muslim majority and Muslim minority countries. Engaging in internal assessment of palliative care provision to Muslim patients is important for quality care. This project aimed to examine gaps in Palliative needs assessment of Muslims in one institution.

OBJECTIVES Assess Swedish palliative care team’s barriers to spiritual care (SC) and baseline knowledge of Islamic influences on healthcare. Interview Muslim patients and insights from a Muslim Imam trained in chaplaincy about PC experience. Develop …

Association Of Incident Cancer To Low-Value Care And Healthcare Cost Burden Among Elderly Medicare Beneficiaries, Chibuzo Iloabuchi

Graduate Theses, Dissertations, and Problem Reports (ETD)

In the United States (US), 25% of healthcare spending is considered wasteful because it is spent reimbursing low-value care. Low-value care is the utilization of healthcare services, medical tests, and procedures that have unclear or no clinical benefit to patients but still exposes them to risk. World-wide, low-value care imposes a significant economic burden on patients, payers, governments, and society. Cancer care among older adults > 65 years is one of the biggest drivers of healthcare expenditure in the US and accounts for nearly 40% of all spending, and low-value care among cancer patients is prevalent and contributes to the financial …

Hospice Response To Covid-19: Promoting Sustainable Inclusion Strategies For Racial And Ethnic Minorities, M. Courtney Hughes, Erin Vernon

Faculty Articles, Papers, and Other Scholarship

There is a disproportionate burden of illness and death among racial/ethnic minorities related to COVID-19. The importance of reaching groups suffering the most with resources such as advance directive guidance, telehealth, and culturally sensitive education materials is vital to providing quality, inclusive care. A crisis presents an opportunity to unite and problem-solve to help avoid the dire consequences facing inaction. In this way, inclusive responses by hospices, social workers, other community partners during the COVID-19 pandemic can help reach and alleviate the pain of those groups most afflicted. We offer hospice inclusion strategies that align with general pandemic response trends …

Bystanders’ Perspectives On The Provision Of Informal, Hospital-Based Care To Bedridden Patients With Cancer In Sri Lanka, B. Sunil S. De Silva

Nursing ETDs

Due to the nursing shortage in Sri Lanka, patients need informal caregivers, known as bystanders, to help provide patient care. This study described bystanders’ perspectives on informal, hospital-based care to bedridden patients with cancer in Sri Lanka. In this qualitative descriptive study, 17 bystanders at Apeksa/Cancer Hospital, Sri Lanka, were recruited using snowballing sampling. Data were collected through telephone interviews and analyzed using content and thematic analyses. Findings showed that paid and unpaid bystanders cover all caregiving tasks with minimum interaction with nurses. Unpaid bystanders described the need for same-sex bystanders and additional help with patients’ mobilization and specialized care. …