Research study participation: High-quality hospice care for all patients
Shannon Walsh, a doctoral researcher at the RAND Corporation and the RAND Graduate School of Public Policy, is conducting a study on how hospice ownership structures impact the delivery of care for patients, with particular examination of how care differs for patients with Alzheimer’s Disease and Related Dementias (ADRD). The study uses Medicare data and interviews with informal caregivers to explore care quality, caregiver experience, and access to services – particularly within for-profit hospices, including those affiliated with private equity firms. For-profit hospice organizations are invited to participate and will be asked to help connect Ms. Walsh with bereaved family caregivers of patients who received hospice care in the past two years. Once the hospice identifies potential caregivers, Ms. Walsh will present the study to them and ask caregivers to participate in a confidential, one-hour phone interview. [Please click the link above for additional information.]

Systemic functioning of Puerto Rican families with a cancer patient: A qualitative-oriented mixed-methods study
Journal of Health Psychology; by Nicole M. Vélez Agosto; 4/25
Puerto Ricans are part of marginalized communities that are impacted by health disparities, such as lifestyles, health behaviors and access to care (Simmons et al., 2011). The purpose of study was to assess systemic functioning in Puerto Rican families with a cancer patient using the Spanish translated version of the Family Genogram Interview (FGI) that measures Bowen’s four emotional processes in nuclear family and family of origin. Results suggested an acceptable reliability for the FGI-Spanish and higher presence of symptoms in a spouse or partner, symptoms in family of origin, focus on a child and emotional cutoff in family of origin. Qualitative findings suggested that main concerns for participants were related to family changes surrounding illness and familial roles, consistent with Bowen’s theory and clinical implications for designing systemic interventions for Puerto Rican families.
Assistant Editor's Note: My mom, now deceased, was Puerto Rican. When my dying father was admitted to home hospice, Mom was asked if she wanted the Latino/Spanish-speaking team. She looked at me like this was an absurd question, then conveyed her confusion to the nurse. She was taken aback by the question; almost offended. My mom came to the states at age 16. She never spoke Spanish in the home as my dad was from the states and spoke only English. I commend the hospice team for asking, and not assuming, that a Puerto Rican caregiver would want a Latino team. This example serves as a reminder that culturally sensitive care is person and family-centered, not based on broad ethnic stereotypes. 

Advancing the primary palliative workforce: Pilot results of the Educating Social Workers in Palliative and End-of-Life Care (ESPEC) self-study program
Journal of Palliative Medicine; by Myra Glajchen, Cathy Berkman, Shirley Otis-Green, Russell K Portenoy; 4/25
Health social workers caring for the seriously ill may lack preparation in the primary palliative skills needed for this complex task. An evidence-based, nationally scalable, multimodality training program-Educating Social Workers in Palliative and End-of-Life Care (ESPEC)-was developed to address the training needs of health social workers. Prior to completing the online training, 21.6%-50.0% of participants rated themselves as "very confident" in the clinical practice skills central to the role of the social worker in serious illness care. After completing the modules, 58.8%-81.4% rated themselves as "very confident" in both clinical and professional skills, with significant changes in nine clinical practices and four professional practices. This pilot supports the feasibility, acceptability, and educational potential of the ESPEC self-study training in increasing confidence in key practices of primary palliative care for health social workers.

The real-world effect of early screening for palliative care criteria in a medical intensive care unit: An instrumental variable analysis
Annals of the American Thoracic Society; by Chad H Hochberg, Rebecca A Gersten, Khyzer B Aziz, Margaret D Krasne, Li Yan, Alison E Turnbull, Daniel Brodie, Michelle Churchill, Danielle J Doberman, Theodore J Iwashyna, David N Hager; 2/25
Early identification of intensive care unit (ICU) patients likely to benefit from specialist palliative care could reduce the time such patients spend in the ICU receiving care inconsistent with their goals. Conclusions: Despite significantly increased specialty palliative care consultation, there was no evidence that early screening for palliative care criteria affected time to DNR/ICU discharge or other secondary outcomes.

Top ten tips palliative care clinicians should know about diagnosing, categorizing, and addressing fatigue
Journal of Palliative Medicine; by Gregg A Robbins-Welty, Danielle Chammas, Ethan J Silverman, Maria Felton Lowry, Elizabeth Hale, Corina Martinez, Morgan M Nakatani, Daniel Shalev, Paul Noufi, Paul A Riordan, Keri O Brenner, William E Rosa, Christopher A Jones; 3/25
Fatigue is a multifactorial symptom that is commonly faced by patients with cancer, chronic disease, and other serious illnesses. Fatigue causes suffering across biopsychosocial domains and affects patients and their loved ones. In this article, a consortium of professionals across cancer care, physical therapy, exercise, pharmacy, psychiatry, and palliative medicine offers tips and insights on evaluating, categorizing, and addressing fatigue in the setting of serious illness. The comprehensive approach to managing fatigue underscores the importance of collaborative efforts characteristic of interdisciplinary palliative care. Prioritizing screening, diagnosing, and treating fatigue is crucial for enhancing patients' and families' overall quality of life.

Barriers to perioperative palliative care across Veterans Health Administration hospitals: A qualitative evaluation
American Journal of Surgery; by Emily E Evans, Sarah E Bradley, C Ann Vitous, Cara Ferguson, R Evey Aslanian, Shukri H A Dualeh, Christina L Shabet, M Andrew Millis, Pasithorn A Suwanabol; 3/25
While providers recognize the importance of palliative care and end-of-life care, obstacles to its use exist at various levels. Identification of these barriers highlights areas to focus future efforts to improve the quality of palliative and end-of-life care for Veterans.

Drivers of palliative care and hospice use among patients with advanced lung cancer
Cancer Medicine; by Megan C Edmonds, Melissa Mazor, Mayuri Jain, Lihua Li, Marsha Augustin, José Morillo, Olivia S Allen, Amina Avril, Juan P Wisnivesky, Cardinale B Smith; 1/25
Despite rigorous evidence of improved quality of life and longer survival, disparities in the utilization of palliative and hospice care persist for racial and ethnic minority patients with cancer. This study evaluated the impact of psychosocial factors on utilization of these services. Minority patients with advanced lung cancer were more likely to receive a palliative care referral and specialty level consultation when compared to non-minority patients. Our work highlights the importance of proactive referral processes in facilitating access to palliative and hospice services, particularly among younger patients.

Theories and concepts about society, dying, and bereavement commonly discussed in education about death, dying, and bereavement
Death Studies; by Charles A Corr, Kenneth J Doka; 4/25
This article describes and offers some evaluations of fifteen prominent theories and concepts in the field of death, dying, and bereavement. These theories and concepts range from claims about "death-denying societies" and the concept of "societal death systems" to theories about coping with dying and coping with loss, grief, and bereavement. Also examined are the concept of disenfranchised grief and theories about contrasting grief styles. Because each of these theories and concepts is often discussed in education about death, dying, and bereavement, it is important that instructors and students understand both their strengths and limitations. The goal of this analysis is twofold: (1) To help guide educators as they explain these theories and concepts to their students and readers, and (2) To assist educators in commenting on the soundness and usefulness of these theoretical frameworks.

The pharmacology of aid in dying: From database analyses to evidence-based best practices
Journal of Palliative Medicine; by Patrick Macmillan, Susan Hughes, Angelique Loscar, Lonny Shavelson; 4/25
We investigated the efficacy of four commonly used aid-in-dying medication protocols-using the time to sleep and time to death as proxies for efficacy. This first-time analysis of aid-in-dying medication protocols showed that while a sedative alone had the best median time to death, the most recent sedative/cardiotoxin protocol had an acceptable median time to death of 0.8 hours, but with fewer prolonged-death outliers.

Advance care planning and unlimited treatment preferences in dementia scenarios: Insights from community-dwelling adults
American Journal of Hospice and Palliative Care; by Yuchi Young, Yichun Liu, Yufang Tu, Wan-Yu Chiu, Ashley Shayya, Thomas O'Grady; 4/25
Dementia leads to progressive cognitive decline, impairing self-care and decision making. Advance directives (AdvDirs) enable individuals to document healthcare preferences while cognitively capable, ensuring value-aligned care and reducing caregiver burden. In the dementia scenario, 26.9% of participants preferred unlimited medical treatment. This preference was strongly associated with a pre-existing attitude favoring life-sustaining treatments ... and religious beliefs ... Conversely, an interest in learning about quality of life at the end of life was negatively associated with preferring unlimited treatment ... Our findings highlight the need to align advance care planning with individuals' values, beliefs, and religious practices. 

“I’m as mad as hell and I’m not going to take this anymore!”
JAMA Neurology; by David N. Korones; 4/25
So shouted news broadcaster Howard Beale in the iconic 1976 film “Network” as he decried pollution, unemployment, inflation, crime, and all that was wrong in the world back then. And so shouted I, as I slammed down the phone after yet another denial from an insurance company—this time denial of treatment for an 8-year-old little girl with a brain tumor.
Every day the phone, email, and text messages mount: an antinausea medication is not approved, oral chemotherapy is denied to a child because it is in liquid form, and only tablets are approved, brain surgery is denied because the patient has the misfortune of not living in the same state as the neurosurgeon who has the unique skill set to remove it, an insurance company that had previously approved an essential therapy for one of my patients now, for inexplicable reasons, denies refills half way through her prescribed course of treatment. Perhaps the more we push back, send them bills for our time, follow that up with bill collectors, call our congressional representatives, and summon our hospital leadership, we can gather a chorus of physicians, patients, hospital leaders, and politicians who all open their windows and, following Howard Beale’s lead, scream in unison that they, too, are mad as hell, and it is long past time to change this unjust system of care. To paraphrase Howard Beale, “our children, our patients are human beings, goddammit, their lives have value!”

‘Losing a part of yourself’: How women grieve their close friend’s death
Omega-Journal of Death and Dying; by Elizabeth W. Sauber, Karen M. O’Brien; 4/25
Friendship provides women with a plethora of benefits, including reduced physiological and psychological distress. Thus, this study qualitatively described the bereavement of seven women who experienced the death of a close woman friend and tested an integrative model predicting prolonged grief and posttraumatic growth with 148 women grieving the death of a close woman friend. Findings from directed content analysis highlighted grief reactions, disenfranchising interactions related to social support, ways of coping, growth after loss, and ongoing challenges. Results from a path analysis indicated that avoidant emotional coping was a key mediator and predictor of prolonged grief, while problem-focused coping served as a key mediator and predictor of posttraumatic growth. The findings can be used to advance research, clinical practice and intervention efforts for women who are grieving the death of a woman friend.

There are two lasting gifts we can give our children...one is roots...the other is wings. ~Unknown author