Literature Review

When words matter: NFDA releases groundbreaking communication guide for funeral professionals National Funeral Directors Association (NFDA), Brookfield, WI; Press Release; 10/27/25 The National Funeral Directors Association (NFDA) has released “When Words Matter: A Funeral Director’s Guide to Clear and Compassionate Communication,” a groundbreaking, research-driven resource designed to bridge the growing language gap between funeral professionals and the families they serve. ... Available now as a free download at NFDA.org/Research, this new guide is grounded in original NFDA research conducted earlier this year with more than 1,100 U.S. consumers across four generations. ... While funeral professionals have long used terms like “funeral,” “memorial service” and “celebration of life,” the new study revealed that families often define – or misunderstand – these terms in radically different ways. Editor's Note: Basic decisions about burial versus cremation usually need to be made before the death. Your interdisciplinary team members need to be up-to-date with this NFDA communication guide, for consistent family information and planning.

Home-based care companies improve outcomes by training family caregivers Home Health Care News; by Joyce Famakinwa; 10/25/25 Home-based care companies are increasingly recognizing the importance of training family caregivers to improve patient outcomes. By engaging family caregivers through education and mobilization, these companies can keep patients out of hospitals longer and maintain them in their homes, contributing to their overall happiness and health. 

Hospice social worker and nurse perceptions of the usability of a hospice live discharge protocol (LDP)American Journal of Hospice & Palliative Medicine; by Stephanie P. Wladkowski, Susan Enguídanos, Tracy A. Schroepfer; 9/25Live discharges from hospice are often distressing for patients, caregivers, and hospice providers alike, disrupting care continuity and leading to emotional and logistical challenges. Despite Medicare’s discharge planning requirement, no standardized process currently exists for hospice-initiated discharges, resulting in variable quality of care transitions.  An explicit Live Discharge Protocol has strong potential to enhance the quality and consistency of a live discharge from hospice care. The LDP provides a framework to help smooth the transition from hospice care and provides patients and families with post-discharge support. Feedback from hospice professionals affirmed the relevance and usability of each step within the LDP, while also identifying opportunities for refinement for future implementation.

Teaching end-of-life care: Q&A with professor of medicine Medical Xpress; by Mahima Samraik, Yale University, edited by Sadie Harley; 10/20/25 Every year, thousands of families sit in hospital rooms hearing words no one wants to hear: "We have done everything we can." What happens next, whether doctors stay engaged or step away, can transform one of life's most difficult moments for patients and their families. Unfortunately, for too many patients, the shift from curative care to end-of-life care leaves them feeling stranded. ... "But it doesn't have to be this way," says Matthew Ellman, MD, professor of medicine (general medicine) at Yale School of Medicine (YSM) and director of Medical Student Palliative and End-of-Life Care Education. Ellman has spent decades at patients' bedsides and now teaches medical students about death and dying. In his recent essay in Academic Medicine, he draws from his personal experiences as a physician and encourages fellow doctors to embrace difficult conversations around end-of-life care.

Health Data Analytics Institute (HDAI) deploys innovative use of LLMs for summarizing and supporting patient preferences at a leading cancer center Bluegrass Live; by PR Newswire, Boston, MA; 10/20/25 An innovative new protocol called Better Real-time Information on Documentation of Goals of care for Engagement in Serious Illness Communication (BRIDGE-SIC) is being launched today at Dana-Farber Cancer Institute. BRIDGE-SIC uses Health Data Analytics Institute (HDAI) large language models (LLMs) to extract and summarize patients' goals of care conversations and their risk stratification tools for patient selection. The AI summaries identify and summarize prior goals of care conversations documented in patients' medical records and share them with inpatient and outpatient clinicians when patients with cancer are admitted to the hospital.

Supporting bereaved caregivers: Adaptation of the REACH behavioral interventionOmega; by Jennifer Martindale-Adams, Jeffrey K Zuber, Deanna Stark, Linda O Nichols; 9/25The brief REACH VA intervention for bereaved caregivers, adapted from the REACH VA (Resources for Enhancing All Caregivers' Health) behavioral caregiver intervention, was piloted October 2023 to March 2025. REACH is structured and standardized to focus on information about grief and bereavement, support, and physical and emotional well-being through problem solving, cognitive reframing, and stress management, but targeted to each bereaved caregiver's specific needs through a Risk Assessment. An accompanying Notebook provides information on practical issues, understanding grief, grief activators, and moving from the caregiver role. On average, caregivers reported significant improvements in depressive symptoms, anxiety, stress, and symptoms of anger ... In February 2025, through the Department of Veterans Affairs Caregiver Support Program, each VA facility implemented the program. 

Nonprofits can profit from customer experience practices Evolve-Success; by Rick de Yampert; 10/14/25 Becca Gatian is grateful for each of the gifts she receives as executive director of Halifax Health – Hospice.“When we notice a gap in service or someone has a concern, we don’t call it a complaint,” said Gatian. “We see it as a gift, an opportunity to improve.” For Halifax Health – Hospice, a nonprofit that services Volusia, Flagler, Orange and Osceola counties, “We always focus on the patient and family – they are our customers,” Gatian said. “‘Client’ seems like a clinical term. It’s really about meeting the customer where they’re at versus having a product that we sell. When you think about a customer and a great experience, it’s because that organization individualized that experience for that particular patient and family.”

Children’s experiences of parental deaths due to suicide, homicide, overdose, alcohol, or drug useJAMA Network Open; by Sean Esteban McCabe, Eric Hulsey, Luisa Kcomt, Rebecca J. Evans-Polce, Glenn Radford, Samuel D. Tennant, Vita V. McCabe; 9/25Childhood bereavement resulting from parental mortality in the US has increased substantially over the past decade, including a surge in parental deaths from stigmatized causes, which are defined as drug overdose, homicide, suicide, and alcohol-induced or other drug-induced deaths. This cohort study found that the number of children bereaved from stigmatized parental deaths has increased and now account for 2 in every 5 parental deaths in Michigan. The increase in children who experienced stigmatized parental deaths is concerning given the increased risks of mental health disorders, child welfare involvement, and criminal justice involvement for children immediately following a parental death. Children and families who are bereaved from a stigmatized death may experience a more complex bereavement process and require a higher level of care.

The Family Caregiver Act—Safeguarding the human care chainJAMA Pediatrics; by Eli Y. Adashi, I. Glenn Cohen; 9/25On August 9, 2024, Jay Robert Pritzker, governor of Illinois, signed into law House Bill (HB) 2161 (Public Act 103-0797), likely the nation’s leading caregiving antidiscrimination legislation. The new law, which took effect January 1, 2025, prohibits employment discrimination against individuals saddled with family caregiving responsibilities. It is by dint of the enactment of HB 2161 that Illinois became the sixth state or district to legally require some form of this employee protection. Alaska, Delaware, Maine, Minnesota, New York, and Washington, DC, precede it, though some of these limit their protection to parents. Moreover, HB 2161 defines personal care as activities wherein a family member assumes responsibility for one or all of the basic needs of an ailing relative, replete with the provision of emotional support and/or transportation to medical appointments. A covered family member may include a child, stepchild, spouse, domestic partner, sibling, parent, mother-in-law, father-in-law, grandchild, grandparent, or a stepparent.Assistant Editor's note: "The Human Care Chain"--what a wonderfully descriptive title this is to describe the Illinois law. Those words evoke strong images of connectedness, humanness, caring, compassion, dedication, goodness, and love. As end-of-life and serious illness care providers, we understand the tremendous value, comfort and necessity of The Human Care Chain.

Grief etiquette in the digital age: Why waiting, listening, and respecting family wishes matters more than ever National Funeral Directors Association (NFDA) - Remembering a Life; by Dr. Camelia L. Clarke; 10/2/25When my nephew died unexpectedly, I was still reeling from the news when my phone began to buzz with notifications. Within an hour, his death was already circulating on social media. The world had found out before our family had even begun to process the loss, let alone notify our closest friends and relatives. I remember feeling overwhelmed, exposed, and, most of all, heartbroken—not just by the loss itself, but by how quickly and impersonally it became public knowledge. As a funeral director and grief educator for nearly thirty years, I’ve witnessed this scenario unfold countless times. 

State decision-making approaches in seriously ill people with intellectual/developmental disabilityJournal of Pain and Symptom Management; by Matthew Castillo, Arlen G. Gaines, Caitlyn M. Moore, Cynthia X. Pan; 8/25Hospice and palliative care (HAPC) clinicians supporting individuals with intellectual and developmental disabilities (IDD) navigate complex decision-making pathways while promoting autonomy and dignity. Approximately 1–3% of the global population lives with IDD, and many healthcare professionals feel ill-prepared to meet their unique needs, particularly in serious illness planning. This manuscript presents the case of Mr. A, an adult with Down syndrome, to illustrate practical ACP [advance care planning] and supported decision-making considerations across Maryland, New York, and Pennsylvania. Each state’s legal requirements for appointing a healthcare agent (HCA), determining capacity, and avoiding guardianship are discussed. Through thoughtful ACP and supported decision-making, HAPC clinicians can promote appropriate autonomy for individuals with IDD, fostering inclusive serious illness discussions and ethical practices across diverse legal landscapes.

Instilling hope: A comprehensive model of cancer care for younger adults Targeted Oncology; by Andrea Eleazar, MHS and Shane Dormady, MD, PhD; 9/29/25 In the past decade, the incidence of numerous cancer types has increased, particularly among younger adults under age 50. For younger adults, many of whom are primary breadwinners of their households or in the height of their educational or professional careers, a cancer diagnosis at this life stage can be unexpected and jarring. ... In an interview with Targeted Oncology, Shane Dormady, MD, PhD, medical director of El Camino Health Cancer Center, describes the unique needs and challenges of younger adults, outlines El Camino Health’s comprehensive care strategy, and offers insights and considerations for treating and interacting with this patient population.

Differences 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.