Literature Review
All posts tagged with “Research News.”
Assessing the perspectives of genetic counselors with oncology patients at the end of life
09/27/25 at 03:45 AMAssessing the perspectives of genetic counselors with oncology patients at the end of lifeJournal of Genetic Counseling; Rosalyn D. Brown, Lori Williamson, Natalie Brooke Peeples, Jing Jin, Alexandrea Wadley; 8/25Cancer genetic services identify individuals that may have a hereditary component to cancer, as it is estimated that up to 10% of cancers are due to a cancer-predisposition gene variant. When an oncology patient has reached the end of life (EOL), genetic counseling and testing may benefit the patient and their family by clarifying hereditary cancer risks. Despite high comfort and preparedness, 77% of respondents desired additional educational training opportunities about providing genetic counseling to oncology patients at the EOL, supporting the need for ongoing education opportunities. The high comfort levels and preparedness reported in this study suggest that genetic counselors are ready and willing to counsel patients facing a terminal diagnosis of cancer and should be further integrated into multidisciplinary teams.
Outpatient pediatric palliative care: A national survey of clinic structures and operations
09/27/25 at 03:40 AMOutpatient pediatric palliative care: A national survey of clinic structures and operationsJournal of Pain and Symptom Management; by Ashley Kiefer Autrey, Caroline Stafford, Casie James, Suraj Sarvode Mothi, Elissa G. Miller, Alexis Morvant, Erica C. Kaye; 8/25Despite the rapid growth of pediatric palliative care (PPC) over the past two decades, outpatient pediatric palliative care (OPPC) remains an underdeveloped resource for children living with serious illness and their families. Characterizing the utilization of clinic models and workflow processes among OPPC programs is essential for establishing benchmarks to help improve OPPC operationalization and hospital-specific program development. This paper presents national data to address this gap, with the goal of supporting PPC programs in their efforts to expand service lines to meet the growing needs of patients with serious illness and medical complexity and their families.
Advance care planning with people living with dementia: Ethical considerations of physicians in the United States and the Netherlands
09/27/25 at 03:35 AMAdvance care planning with people living with dementia: Ethical considerations of physicians in the United States and the Netherlands The Journals of Gerontology; by Jingyuan Xu, David R Mehr, Marieke Perry, K Taylor Bosworth, Kate McGough, Wilco P Achterberg, Hanneke Smaling, Jenny T van der Steen; 8/25Interviews with 50 Dutch physicians and 47 American physicians and 3 nurse practitioners generated three themes of ethical considerations: 1) Respecting the autonomy of the person with dementia, 2) Rationality as the basis for decisions and subsequent actions, and 3) Minimizing burden and suffering. The complexity of ACP [advance care planning] for people living with dementia is reflected in the challenges within each ethical consideration and the tensions between them, especially between autonomy and rationality. We recommend an approach to ACP that balances the ethical considerations, focusing on the values of the people living with dementia and allowing flexibility in future decision-making to take the current best interest of the person into account.
The effect of the Care Ecosystem Collaborative Care Model on end-of-life outcomes for people with dementia and their caregivers
09/27/25 at 03:30 AMThe effect of the Care Ecosystem Collaborative Care Model on end-of-life outcomes for people with dementia and their caregiversAmerican Journal of Hospice & Palliative Care; by Lauren J Hunt, Krista L Harrison, Rachel Kiekhofer, Jennifer Merrilees, Alissa B Sideman, Sarah Dulaney, I Elaine Allen, Kirby Lee, Winston Chiong, Sarah M Hooper, Stephen J Bonasera, Tamara L Braley, Bruce L Miller, Katherine L Possin; 8/25Collaborative care models that feature care navigation have been found to have a range of benefit for people with dementia (PWD) and their caregivers, but their effect on end-of-life (EOL) outcomes has not been robustly evaluated. Our primary objective was to evaluate the effect of the Care Ecosystem-a telephone-based collaborative care model for dementia with care navigation-on EOL outcomes for PWD and their caregivers. Compared to Usual Care, Care Ecosystem caregivers had higher ratings of caregiver self-efficacy prior to PWD death ... but caregiver's satisfaction with EOL care did not differ between groups ... Qualitative analysis revealed Care Ecosystem provided helpful emotional and practical support, but participants wanted more anticipatory guidance, more information about hospice care and earlier referral, and better coordination with the healthcare team.
Integrating the clinical nurse specialist into a multi-state hospice in a large healthcare system
09/27/25 at 03:25 AMIntegrating the clinical nurse specialist into a multi-state hospice in a large healthcare systemJournal of Hospice and Palliative Nursing; by Jennifer Jarrett Lee, Melissa Robinson; 8/25Advanced Practice Registered Nurses are increasingly recognized for their role and impact in hospice and palliative care. The integration of a CNS into the practice of a large, multistate Hospice and Palliative Care program is discussed in this article. A timeline is provided with 4 phases of integration with priorities identified and specific strategies that were implemented to overcome challenges during the process. The value of CNS practice to the organization is highlighted in 3 practice exemplars, showing return on investment in terms of increased patient safety and implementation of evidence-based practice for home infusions, developing nurse confidence through complex case reviews, and reducing staff injuries through developing a Safe Patient Handling program.
Initiation of pregabalin vs gabapentin and development of heart failure
09/27/25 at 03:20 AMInitiation of pregabalin vs gabapentin and development of heart failureJAMA Network Open; by Elizabeth E. Park, Laura L. Daniel, Alyson L. Dickson, Meghan Corriere, Puran Nepal, Kathi Hall, W. Dale Plummer, William D. Dupont, Katherine T. Murray, C. Michael Stein, Wayne A. Ray, Cecilia P. Chung; 8/25Both pregabalin and gabapentin are common nonopioid medications used to treat chronic pain, which affects up to 30% of patients. Because pregabalin has greater potency than gabapentin in binding to the α2δ subunit of the L-type calcium channel, pregabalin may be associated with an increased risk for heart failure (HF). The findings suggest that pregabalin should be prescribed with caution in older patients with noncancer chronic pain.
A decade of interactive educational exchange: Impacting interprofessional palliative care education
09/27/25 at 03:15 AMA decade of interactive educational exchange: Impacting interprofessional palliative care educationJournal of Pain and Symptom Management; by Laura J Morrison, Shirley Otis-Green, Julie Bruno, Pamela N Fordham, Elise C Carey; 9/25The interprofessional clinical practice model is arguably the most impactful and generative aspect of hospice and palliative care (HPC) clinical practice. This article describes the innovative shared interprofessional leadership model, andragogical infrastructure, program development, educational impact, and critical lessons from the Interactive Educational Exchange (IEE). In response to a deficit in interprofessional HPC educational opportunities for rapid scholarship dissemination and mentorship, interprofessional leaders from medicine, social work and nursing proposed and implemented the IEE at the Annual Assembly of Hospice and Palliative Care presented by the American Academy of Hospice and Palliative Medicine and Hospice and Palliative Nurses Association from 2010-2020. The reported outcome measures for interprofessional scholarship and engagement, session evaluations, and attendance demonstrate why this successful innovation was repeated annually for over a decade pre-COVID.
Differences in after-death communications: A comparative analysis of unexpected vs. expected deaths and their impact on survivors' grief and perception of death
09/27/25 at 03:10 AMDifferences in after-death communications: A comparative analysis of unexpected vs. expected deaths and their impact on survivors' grief and perception of deathOmega; by Tess H McCormick, Gwen Grams, Fatma A Wise, Madeline Burns, Ashna Charania, Noelle St Germain-Sehr, Chris Roe, Callum E Cooper, David Lorimer, Evelyn Elsaesser, Jennifer Kim Penberthy; 9/25This study explores changes in grief and fear of death in individuals who reported after death communications (ADC) from people who died unexpectedly or whose death was expected. We found that those bereaved by unexpected loss reported significantly higher levels of uncertainty regarding changes in their fear of death compared to those bereaved by an expected loss. However, no significant differences were found in grief between the two groups. Most participants reported a positive impact of ADC on their bereavement, regardless of the type of loss they experienced.
The silent grief of grandmothers after an out-of-order death-An interpretative phenomenological analysis
09/27/25 at 03:05 AMThe silent grief of grandmothers after an out-of-order death-An interpretative phenomenological analysisDeath Studies; by Jordan Robertson, Elizabeth A Cutrer-Párraga, Paul Caldarella, Jeremy B Yorgason, Terrell Young, Erjola Gjini, Sarah Stuart, Savannah Tueller; 9/25This study delves into the lived experiences of grandmothers grappling with grief following the "out-of-order" death of a child, child-in-law, or grandchild ... Findings reveal three key themes: navigating personal grief, intergenerational support dynamics, and reconstructing family identity. Grandmothers oscillate between loss-oriented and restoration-oriented coping, with grief intensity varying by relational proximity-most profound when losing their own child. They provide emotional and practical support to surviving grandchildren, yet their own sorrow is frequently overlooked, fostering isolation. The study suggests the need for enhanced recognition and tailored support for grandmothers, integrating life course theory to address the disruption of off-time deaths, ultimately advocating for a balanced approach to their bereavement process.
Rehab and death: Improving end-of-life care for Medicare skilled nursing facility beneficiaries
09/27/25 at 03:00 AMRehab and death: Improving end-of-life care for Medicare skilled nursing facility beneficiariesJournal of the American Geriatrics Society; by Sarguni Singh, Christian Davis Furman, Lynn A. Flint, Joan Teno; 8/25Hospitalized older adults with serious illness may be discharged to a skilled nursing facility (SNF) [and] ... for those that do not improve, discharge to a SNF can begin a cycle of costly care transitions between hospital, home with home health care, SNFs, and long-term care facilities, leading to fragmented care and missed opportunities for discussions about preferences for care, illness understanding, and to address distressing symptoms. In this article, we describe key policies that contribute to high-cost, low-value care near the end of life for older adults using the Medicare SNF benefit.
Driving innovation: Healthsperien launches Center for Health Research, Policy & Strategy led by seasoned experts
09/24/25 at 03:00 AMDriving innovation: Healthsperien launches Center for Health Research, Policy & Strategy led by seasoned experts PR Newswire, Washginton, DC; by Healthsperien; 9/23/25 Healthsperien announces the official launch of its Center for Health Research, Policy & Strategy, marking the third in a series of new Centers of Expertise designed to provide clients with specialized, high-quality services and reinforce Healthsperien as a comprehensive partner and integrated hub for health policy, government relations, and research strategies. ... The Center will be led by Dianne Munevar, Partner, who joins Healthsperien after serving as Vice President of Health Care Strategy at NORC at the University of Chicago. She will lead a seasoned team of 5 research, policy, and strategy experts, who also come from NORC at the University of Chicago, ...
The new clinician-scholars—dual training in medicine and humanities drives health research innovation
09/22/25 at 03:00 AMThe new clinician-scholars—dual training in medicine and humanities drives health research innovation JAMA; by Vinayak Jain, MD; Kayla Zamanian, MS; Lakshmi Krishnan, MD, PhD; 9/18/25 Clinicians and researchers operate in an evolving landscape that demands innovative approaches to knowledge production and dissemination. Emerging technologies like artificial intelligence are transforming health care, public trust in scientific institutions is deteriorating, and major centers of biomedical research are grappling with programmatic and funding disruptions. In response, a new paradigm of clinician-scholar must emerge—one equipped not only with scientific fluency, but also the conceptual, analytical, and structural tools of humanities and social sciences.
A rapid review of states' Portable Medical Order forms and the National POLST Paradigm for Advance Care Planning
09/20/25 at 03:35 AMA rapid review of states' Portable Medical Order forms and the National POLST Paradigm for Advanced Care PlanningJournal of Hospice and Palliative Nursing; by Tracy Fasolino, Megan Pate, Nancy Dias, Rikki Hooper, Lena Burgess, Megan Golden, Savannah Horvick, Jamie Rouse, Elizabeth Snyder; 8/25Hospice and palliative care nurses initiate goals of care conversations with patients and family members while advocating for the completion of advance directives. As leaders in these conversations, nurses must have a working knowledge of the various forms, such as portable medical orders. The National Physician Orders for Life-Sustaining Treatment (POLST) Paradigm calls for the standardization of portable medical orders to ensure goal-concordant care that can cross all healthcare settings. This rapid review provides an overview of state-level portable medical order forms, compares and contrasts them with the National POLST form, and proposes policy recommendations for hospice and palliative care nurses to advocate within their state, territory, or tribal nation.
Beyond grief: Quantifying bereavement needs of rural family caregivers
09/20/25 at 03:30 AMBeyond grief: Quantifying bereavement needs of rural family caregiversPalliative and Supportive Care; by Catherine Vanderboom, Diane Holland, Cory Ingram, Brystana G Kaufman, Allison Gustavson, Jay Mandrekar, Ann Marie Dose, Ellen Wild, Carole Stiles, Joan M Griffin; 9/25Family caregivers (FCGs) may experience numerous psychosocial and practical challenges with interpersonal relationships, mental health, and finances both before and after their care recipient (CR) dies. The specific challenges affecting rural FCGs who often have limited access to palliative care services, transitional care, and other community resources are not well understood... Bereavement support should extend beyond a focus on grief to include practical challenges experienced by FCGs. Because challenges experienced in the bereavement period often begin before a CR's death, there is benefit in continuity of FCG support provided by a known clinician from pre- to post-death. When given an option, many rural FCGs are open to bereavement support as early as a week after the death of a CR.
Serious illness communication in homecare nursing: A concept analysis
09/20/25 at 03:25 AMSerious illness communication in homecare nursing: A concept analysisJournal of Hospice and Palliative Nursing; by Christine S Davidson, Olga Ehrlich, Toni L Glover; 8/25Many seriously ill patients receive nursing care at home to manage their illness [and] there is a growing overlap between homecare and palliative or hospice care. In the homecare setting, nurses may be uncertain about their role and responsibility for engaging in "serious illness communication." The term "serious illness communication" is sometimes used ambiguously, overlapping with other terms such as goals of care discussions or end-of-life conversations. Proponents of serious illness communication emphasize the need for a shift from traditional advance care planning toward a real-time, patient-centered dialogue adaptive to the evolving nature of serious illness.
Suicide bereavement among Black-Americans: Evidence from the General Social Survey
09/20/25 at 03:20 AMSuicide bereavement among Black-Americans: Evidence from the General Social SurveyOmega-Journal of Death and Dying; by William Feigelman, Julie Cerel, John McIntosh, Nina Gutin, Alice C. Edwards; 8/25Limited research attention has focused on examining the diverging adaptations of American Blacks and Whites to suicide losses. We utilized the 2016 General Social Survey, which included questions related to experiencing suicide bereavement, investigating hypotheses past studies suggested predicting Blacks face more grieving difficulties than their White counterparts. This data did not confirm any evidence of heightened grief or mental health problems among the Black respondents. Owing to the limited number of measurements of mental health assessments more research will be needed to confirm these findings.
Associations of patient experience with doctor-patient communication and patient-reported physical and mental health in seriously ill adults
09/20/25 at 03:15 AMAssociations of patient experience with doctor-patient communication and patient-reported physical and mental health in seriously ill adultsJournal of Patient Experience; by Sarah F. D’Ambruoso, Anne M. Walling, Neil S. Wenger, Rebecca L. Sudore, Lisa Gibbs, Maryam Rahimi, Ron D. Hays; 8/25We administered the Consumer Assessment of Healthcare Providers and Systems (CAHPS®) communication scale, Patient-Reported Outcomes Measurement and Information System (PROMIS®) global health items, and the PROMIS-29 depression and anxiety scales. Better global health (PROMIS) at baseline was associated with better doctor-patient communication (CAHPS) at 12 months ... and better doctor-patient communication at baseline was related to better mental health at follow-up ...The results suggest that patients’ overall health may influence doctor-patient communication, and this communication may impact patients’ mental health over time.
“I know you didn’t want to stay”: Emergency Department conversations about disposition for people living with dementia
09/20/25 at 03:10 AM“I know you didn’t want to stay”: Emergency Department conversations about disposition for people living with dementia The Gerontologist; Justine Seidenfeld, Matthew Tucker, Melissa Harris-Gersten, Gemmae M Fix, Nina R Sperber, Susan N Hastings; 8/25When people living with dementia present to the emergency department (ED), the disposition decision- to admit them to the hospital or discharge them home- can be difficult for providers. Major themes included 1) disposition conversations had significant variation in depth and content, 2) patient and care partner participation varied with disposition, and 3) satisfaction was driven by alignment of disposition preferences. Our study suggests that there are no consistent formats of disposition conversations for people living with dementia. Improving quality may be most needed when preferences are misaligned, and this should be identified early in the encounter.
The best end-of-life care begins with TRUTH
09/20/25 at 03:05 AMThe best end-of-life care begins with TRUTHProfessional Case Management; by Julie-Kathryn E Graham, Christina Kelley, Gabriella Malagon-Maldonado; 9/25For decades, research has recommended truth and transparency in end-of-life care discussions with patients, families, and family-centered care. This study demonstrated that, in practice, this is often not done, resulting in further traumatization to families at the end of life ... [which] makes information processing and decision-making very difficult. At end-of-life, person-centered care is family-centered care. A person's individuality is inextricable from who they are to their family. If we do not care for the family, we do not care for our patients.
Hospice Research Information 9/20/25
09/20/25 at 03:00 AMHospice Research Information 9/20/25
Research digs into costs, opportunities in hospice, palliative care
09/15/25 at 03:00 AMResearch digs into costs, opportunities in hospice, palliative care Hospice News; by Jim Parker; 9/9/25 Researchers have recently uncovered significant financial trends taking shape in hospice and palliative care. Issues examined relate to cost-effectiveness, Medicare Advantage spending patterns, caregivers’ financial challenges and the cost-effectiveness of palliative care.
Developing competencies to advance health care access and quality for Latino, Hispanic, and Spanish origin populations-A consensus statement
09/13/25 at 03:45 AMDeveloping competencies to advance health care access and quality for Latino, Hispanic, and Spanish origin populations-A consensus statementJAMA Network Open; by Débora H. Silva, John A. Davis Rodríguez, Hector Rasgado-Flores, Pilar Ortega, Deion Ellis, Fernando Sánchez Mendoza, Victor Cueto, Fabiola Quintero-Rivera, Norma Iris Poll-Hunter, Minerva Romero Arenas, Kenneth Lee Dominguez, Juan Emilio Carrillo, José E. Rodríguez, John Paul Sánchez; 8/25Question: What competencies and milestones are essential for advancing health equity for Latina, Latino, Latinx, Latine, Hispanic, and Spanish Origin (LHS+) populations? Since the 1970s, the LHS+ population has increased 6-fold and grown to be the largest ethnic or racial group in the US and accounts for approximately 20% of the US population. The LHS+ health equity competencies and milestones resulting from this study add to prior work by creating a blueprint for standardization and broader application of such educational experiences on a national level. As a tool to enhance CBME [competency-based medical education ] efforts aligned with care for LHS+ populations, the competencies may aid educators and institutions through an LHS+–informed lens in conducting gap analyses for the development of local curricula, developing teaching and assessment materials, supporting the professional development of learners and faculty, and facilitating educational scholarship.
Are we growing leaders? Exploring leadership training in hospice and palliative medicine fellowship
09/13/25 at 03:40 AMAre we growing leaders? Exploring leadership training in hospice and palliative medicine fellowshipJournal of Pain & Symptom Management; by Lynn A Flint, Greg Wallingford, Paul Tatum, Julie Bruno, Helen Fernandez, Elise C Carey; 8/25The purpose of this study was to characterize the current state of leadership curricula in HPM fellowships and understand which leadership topics fellowship program directors (PDs) consider to be most important to include in a leadership curriculum for fellows. Respondents rated leadership topics as important for training, yet many topics are not included in fellowship curricula. Six topic areas related to communication and self-management were rated as having great need or were included in existing curricula by more than 60% of respondents. PDs identified ten topics to be of great need for fellows, all but one of which were included in at least 40% of programs' curricula. Negotiation was the exception being included in only 20% of programs' curricula.
Medicare Advantage plan spending and payments under the hospice carve-out
09/13/25 at 03:35 AMMedicare Advantage plan spending and payments under the hospice carve-outJAMA Network Open; by Meghan Bellerose, Andrew M Ryan, Claire K Ankuda, David J Meyers; 8/25In 2021, the Centers for Medicare & Medicaid Services implemented a Value-Based Insurance Design (VBID) model to test the impact of including hospice services in the Medicare Advantage (MA) benefits package. In December 2024, the VBID was ended following widespread dissatisfaction ... Under the carve-out model, after an MA enrollee elects hospice, health care related to their terminal illness is paid for by fee-for-service (FFS) Medicare. MA plans stop receiving the inpatient and outpatient portions of that enrollee's capitated payment but continue to receive premium and rebate payments. In this cross-sectional study, MA plans received high premium and rebate payments for beneficiaries enrolled in hospice despite low health care spending after enrollees elected hospice. To reduce excess payments, the Centers for Medicare & Medicaid Services could require MA plans to submit information on enrollees' use of supplemental benefits and adjust payments made after election of hospice to align with spending.
Patient-and caregiver-identified goals for advance care planning in patients with dementia or cognitive impairment
09/13/25 at 03:30 AMPatient-and caregiver-identified goals for advance care planning in patients with dementia or cognitive impairmentDementia; by Kristin L Rising, Angela M Gerolamo, Nazanin Sarpoulaki, Venise J Salcedo, Grace Amadio, Robin Casten, Anna Marie Chang, Alexzandra T Gentsch, C Virginia O'Hayer, Barry Rovner, Brooke Worster; 8/25Despite an aging population and acknowledged importance of advance care planning (ACP) for persons living with cognitive impairment, few engage in ACP. Most existing tools to facilitate ACP discussions focus on medical outcomes, despite research documenting that persons with cognitive impairment often have quality of life outcomes as primary goals. This qualitative study engaged persons with mild cognitive impairment (MCI) or dementia and their carers to identify outcomes that are most important to inform development of a tool to guide ACP interventions with this population. Participants identified 23 outcome categories for ACP interventions within the following six domains: social life, family involvement, current lifestyle, physical independence, financial independence and healthcare goals. Of the 23 outcome categories, the majority (86%) were quality of life goals and only a small fraction (14%) were healthcare specific.