Literature Review

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.

Physician billing for advance care planning among Medicare fee-for-service beneficiaries, 2016-2021The Permanente Journal; by Nan Wang, Changchuan Jiang, Elizabeth Paulk, Tianci Wang, Xin Hu; 8/25In 2016, the Centers for Medicare & Medicaid Services started reimbursing practitioners for their time spent providing advance care planning (ACP) with patients. Results: The percentage of practitioners billing ACP visits tripled from 1.76% in 2016 to 4.56% in 2021, with the highest percentage among hospice and palliative medicine practitioners (36.94%) in 2021. ACP service volume was similar by metropolitan status for hospice and palliative medicine, but it was higher in nonmetropolitan regions for cancer-related specialties, non-cancer terminal disease specialties, and primary and geriatrics care. This nationwide analysis showed low adoption of ACP billing by 2021, and it varied widely across specialties. This may reflect practical challenges of ACP related to comfort level with ACP discussion and documentation burden among the professional communities.

Guest Voice: What ‘It’s a Wonderful Life’ teaches us about living with MS Multiple Sclerosis News Today; by Donald Kushner, MD; 8/15/25 Donald Kushner, MD, is a retired physician, board certified in internal medicine and hospice and palliative care. He has been living with multiple sclerosis (MS) for more than 20 years and draws on his dual perspective as both doctor and patient to explore illness, identity, and adaptation. He’s writing a book about how people with chronic illness and their support systems can better understand — and talk to — each other.

The future of work: Prioritizing human connection with Ryan Jenkins Teleios Collaborative Network (TCN) - Anatomy of Leadership; podcast/video by Chris Comeaux with Ryan Jenkins; 8/13/25 "Connection isn't new, it's just neglected. And it's neglected now more than ever." These powerful words from Wall Street Journal bestselling author Ryan Jenkins set the stage for a transformative conversation about what might be our most critical yet overlooked human need. Despite our hyperconnected world of social media, texting, and endless digital communication, genuine connection continues to slip through our fingers. Jenkins reveals the crucial distinction between mere communication and true connection – explaining how our brains process these experiences differently and why it matters so profoundly.

Issues in developing multilingual graphics-based digital caregiver guides for dementia careDiscourse, Context & Media; by Boyd H. Davis, Margaret Maclagan, Meredith Troutman-Jordan; 8/25To increase the opportunity to educate caregivers for persons with dementia, particularly the nearly 40% of migrant healthcare workers emigrating to the US, we have chosen an adaptation of graphic medicine as a means of presenting these workers with conversations about dementia care in two formats of ‘mini-comics’: photo-based and cartoon. Our graphic Caregiver Guides are a form of mediated digital discourse that incorporate both words and pictures, and thereby support caregivers as they draw immediately useful guidance from online materials when offering daily off-line care. Each guide covers a situation that occurs commonly as caregivers care for people living with dementia.

Simulation, flipped classroom, and reflective dialogue in socioemotional training in end-of-life care: Perspectives of nursing students Journal of Hospice & Palliative Nursing (HPNA); by María Lanza, Rebeca Abajas, Mar Aparicio Aparicio, Ángeles Melero, Carmen Ortego; 8/1/25The implementation of active methodologies in end-of-life education can play a crucial role in stimulating participatory learning and facilitating the acquisition of socioemotional competencies. ... From the students’ perspective, simulation, reflective dialogue, and flipped classroom enhance the conceptual learning process and facilitate students’ socioemotional preparation to face this complex and challenging professional situation. Editor's Note: Today’s tech-savvy nursing students show that simulation, reflective dialogue, and flipped classrooms build the person-centered qualities hospice and palliative care need. Use these methods—inside and outside the classroom—to improve patient/family care, teamwork, and self-care. For more information: 

New report gives healthcare providers fresh guidance on communicating with older adults McKnights Long-Term Care News; by Donna Shryer; 8/7/25 A new report from the Gerontological Society of America reveals critical strategies for healthcare providers to improve communication with older adults, who now represent almost 17% of the US population. The comprehensive guide, titled “Communicating With Older Adults: A Review of What Really Works,” addresses the growing need for effective patient-provider interactions as America ages. Approximately one-third of adults aged 65 or more years have a disability that may affect communication, the report noted.