Literature Review

Facebook and perinatal loss: Facebook groups use among parents from the U.S., France and ItalyOmega-Journal of Death and Dying; by Livia Sani, Meryem Labouihi, Joanne Cacciatore, Marie-Frédérique Bacqué; 9/25This study explores how ... [Facebook] groups are used after perinatal loss and evaluates their psychological role for bereaved parents. We conducted a thematic analysis of posts from FB groups in the U.S. and France over one month; a third group from Italy was excluded due to insufficient activity. Four main categories emerged: emotional responses to loss, subsequently born children, mutual sharing of memories of their deceased children and practical information. Findings reveal similarities between the French and U.S. groups, particularly in how mothers express emotions, seek validation, and commemorate their children. The lack of active Italian groups may reflect cultural attitudes toward grief. 

Critical care physicians’ perspectives on nudging in communicationJAMA Network Open; by Derek R. Soled, Christy L. Cummings, Laura M. Berbert, David N. Williams, William B. Feldman, Robert D. Truog, Emily B. Rubin; 9/25Our qualitative study on the experiences and perspectives of nudges by critical care physicians identified multiple themes relating to the appropriate use and ethics of nudging patients in clinical decision-making. In the decision-making context, a nudge is defined as “any aspect of the choice architecture [the intentional arrangement and presentation of options to subtly guide people towards certain choices] that alters people’s behavior in a predictable way without forbidding any options or significantly changing their economic incentives.” While nudges preserve a person’s choice set without restricting options, they make it more likely that a person will choose some particular option by triggering decision-making heuristics and biases. Many physicians described nudging as an inevitable and natural part of communication—but one that must be used thoughtfully for it to be ethically justifiable. Assistant Editor's note: As a clinician, I can see where nudging may be appropriate at certain times, and when the clinician knows the values, concerns and goals of the patient/family. However, often the critical care clinician does not have that intimate knowledge of their preferences. In these situations, a better choice than nudging might be to request a palliative care consult, so that goal concordant decision making can be explored. 

Timing matters: Impact of early advance care planning conversations on hospice utilization in outpatient oncologyJCO Oncology Practice, An American Society of Clinical Oncology Journal; by Lydia Mills, Malia Albin, Ami Gorsky-Zabukovic, Liz Hutchison, Molly Mendenhall, and Robyn Tibert; 10/7/25  Results: 53% of physicians interviewed defined [Advance Care Planning] ACP as hospice, end-of-life, or code status conversations. This group of providers preferred waiting to conduct ACP discussions until later in a patient’s disease trajectory. However, 33% of physicians interviewed viewed ACP as broader discussions, to include patients’ values, goals and preferences for EOL care. These physicians stated they engage in ACP conversations as early as the first or second visit, especially with patients who have Stage IV disease or have a poor prognosis, introducing hospice as a potential option and revisiting these discussions throughout the course of treatment. PI data showed that providers who engage in early and consistent ACP discussions have a 17% higher hospice enrollment rate compared to their peers. 

Adult Protective Services work with clients at the end of life: Challenges and support needsJournal of Elder Abuse and Neglect; by Wei-Lin Xue, Joy Swanson Ernst, Pi Ju Liu; 9/25Adult Protective Services (APS) professionals frequently interact with clients who are seriously ill or dying as they investigate cases of elder abuse and self-neglect. This study explored the unique challenges and support needs of APS workers in these end-of-life contexts. Thematic analysis identified two overarching domains: (1) challenges – including family conflict, limited caregiver preparedness, client self-determination, challenges to service access, and emotional strain on professionals; and (2) support needed – such as improved interagency collaboration, peer and organizational support. Participants emphasized the emotional toll of witnessing client decline and death, and highlighted gaps in training, coordination, and workplace support. Findings highlight the need for targeted policy and practice reforms to better equip APS professionals addressing elder abuse and self-neglect at the end of life.

Confidential conversations in palliative care: An ethnographic exploration of trust and interpersonal relationship between nurse and patient Journal of Clinical Nursing; by Tove Stenman, Bodil Holmberg, Ylva Rönngren, Ulla Näppä, Christina Melin Johansson; 9/30/25 Confidential conversations in palliative care are grounded in fragile, dynamic trust, necessitating ongoing presence, sensitivity and adaptability from RN. To support these interactions, healthcare environments must prioritise privacy, relational continuity and communication training. Future research should investigate how organisational structures and clinical settings influence confidential conversations. ... Healthcare environments should facilitate confidential conversations by ensuring relational continuity and minimising distractions. Communication training that emphasises presence and management of silence can strengthen nurse–patient relationships, enhancing patient care and emotional support.

The 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.

The 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.

Building blocks of hospice family caregiver support Hospice News; by Holly Vossel; 9/24/25 Untapped reimbursement opportunities exist when it comes to developing a sustainable family caregiving infrastructure in the face of rising demand for home-based hospice care. ... Among the payment avenues with potential to improve support for caregivers is the Medicaid-funded Structured Family Caregiving (SFC) program. SFC coverage includes a modest financial stipend to health care providers that offer home- and community-based services for caregivers. ... Roughly 63 million Americans are family caregivers, an increase of nearly 50% since 2015, according to a report from the National Alliance for Caregiving and AARP. About one-in-every-four adults is a caregiver to a family member, with 40% of these individuals providing high-intensity care, the report found. About half of the nation’s caregivers reported negative financial impacts, with one-in-five unable to afford basic needs such as food and 25% taking on debt. Additionally, one-in-five caregivers have poor health outcomes, the report found.Editor's Note: Are you aware that the 2008 CMS Hospice Conditions of Participation identify the "family" 423 times? (Yes, I've searched, counted, and categorized.) Click here for AARP's 2025 edition of Caregiving in the US.

A 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. 

The 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. 

Benefits and burdens of research participation: A mixed methods systematic review in palliative and end-of-life careJournal of Hospice and Palliative Nursing; by Cara L Wallace, Stephanie P Wladkowski, Ruaa Al-Juboori, Anna Wingo, Kathryn W Coccia, Rebecca Hyde, Verna Hendricks-Ferguson; 8/25Research participation of hospice and palliative care patients and family caregivers is essential to develop and test best practices. Yet, healthcare professionals are often hesitant to ask patients and caregivers to participate in research, fearing it is too intrusive or unethical during a sensitive time. This review focused on the motivating factors, benefits, and burdens of research participation for patients with serious illness and their family caregivers. For clinicians and researchers, connecting patients and caregivers to palliative and end-of-life research may be both beneficial as a contribution to scientific literature and as an additional source of ongoing support.

How ‘The Pitt' gets death right Hollywood Reporter; by Ingrid Schmidt; 9/8/25 Boasting 13 Emmy nominations and four recent TV Critics Association Award wins, HBO Max's breakout medical drama The Pitt has been widely lauded for its hyperrealistic portrayal of a chaotic, underfunded hospital emergency department. Among the many things the show has been credited for getting right is its nuanced depiction of death and dying. The Pitt cuts deep into the heart of harrowing end-of-life decisions and conversations faced by patients, family members and physicians, as well as the messy emotional aftermath. Editor's Note: Ira Byock, MD--pioneer palliative physician--significantly contributed to The Pitt's death stories. Explore more in our previous posts: Social Media Watch 6/20/25 and “It’s an homage”: Noah Wyle quietly sneaked in a tribute in one of the best episodes of ‘The Pitt’ . Additionally, we thank Dr. Byock for serving as a guest editor in our newsletter. 

Conversational AI in hospice care: risks and benefits Hospice News; by Jim Parker; 8/29/25 Numerous types of artificial intelligence (AI) have gained a substantial foothold in health care, including hospices, with conversational AI among them. Conversational AI uses natural language processing and machine learning to develop virtual assistants and chatbots that can automate certain functions. ... The use of conversational AI in health care for the most part falls into two categories — delivery of remote health services and administrative assistance to health care providers, according to 2024 research published in the Journal of Medical Internet Research. ... However, the technology has limitations, the study found. These include ethical challenges, legal and safety concerns, technical difficulties, user experience issues and societal and economic impacts.