Literature Review

[Sweden] The process of pain assessment in people with dementia living in nursing homes: A scoping reviewPalliative Care and Social Practice; Caroline Kreppen Overen, Maria Larsson, Adelheid Hummelvoll Hillestad, Ingela Karlsson, Siren Eriksen; 1/25Studies have documented a pain prevalence in people with dementia living in nursing homes of 35%–43%, but a possible prevalence of 60%–80%. Self-reported information is the most appropriate when assessing pain, as symptom experience is subjective and highly personal. However, for people with dementia living in nursing homes, self-reporting represents a challenge due to cognitive impairment, including difficulties with language and communication. People with dementia might express pain with different behavioural expressions or signs, such as agitation, apathy, restlessness or wandering. Numerous observational assessment tools targeting pain in people with dementia have been developed and evaluated and systematic use of standardized observational tools has been recommended.

Medical professionals’ perceptions of and experiences with terminally ill Orthodox Jewish patientsAmerican Journal of Hospice and Palliative Medicine; by Moshe C. Ornstein, David Harris; 1/25Orthodox Jewish patients with terminal illnesses have unique goals and desires, often driven by halakha (Jewish law and ethics) and cultural norms. Compared to the general population, Orthodox Jewish patients with terminal illnesses are more likely to request aggressive measures at end-of-life and are less likely to have completed advanced directives and health care power of attorney documentation. They also do not always have a rabbinic authority involved in decision-making. Health care professionals highlighted strong religious and community support as positive elements of caring for this population and recommend that medical teams establish early and direct communication with rabbinic authorities for those patients for whom a rabbi’s involvement is desired.

Stillwater Hospice CFO: A winning recipe for improving rural hospice care Hospice News; by Holly Vossel; 1/23/25 Montana-headquartered Stillwater Hospice has found a successful rhythm to strategic rural-based growth and sustainability. The strategy hinges on building culture, staffing resources and a reputation for quality, according to CFO and Co-founder Chris Graham. Launched in 2017, the hospice company serves predominantly rural-based populations in Montana, northern Wyoming and South Dakota. ... What are the most significant concerns among rural-based hospice providers currently? How have the challenges of rural care delivery evolved in recent years? "Staffing is very hard. You’ve got to find staff who are willing and like to travel because they have a lot of windshield time. It’s also the logistics of remote care. We have patients that live 75 miles or more outside of a town, then once you get there it’s another 20 miles on a dirt road that could be covered in snow and ice. ..." [Click on the title's link to continue reading.]

Jan. 27, 2025, International Holocaust Remembrance Day [click here for link 1]--paired with--A little-known story about a Jewish refugee and Cicely Saunders [click here for link 2]Compilation by Joy Berger, editor; for 1/27/25Do you know? Today's modern hospice movement was born out of the terminal illness of a Polish, Jewish ghetto refugee and his lasting influence on the young Cicely Saunders. Upon his death in 1948, he left money for her to create a new place for peaceful dying. She opened St. Christopher's Hospice in 1967.

Reflection on the Potomac River Crash Hospice & Palliative Care Today; by Joy Berger, Editor in Chief; 1/30/25We are absorbing unfolding news about Thursday night’s tragic plane and helicopter crash at the Potomac River. As with many of you, I’m flooded with memories of flying in and out of this same airport: gazing out the plane’s window to delight in DC’s historic sites; delighting in the diversity of my fellow travelers and whatever their stories might be. Many of these Washington DC trips were to be with our hospice and palliative colleagues at the (then) NHPCO Conferences or other related meetings. Today, I’m grateful for our safe journeys then. Today, I hope for renewed connections: the joy of each person’s unique life-journey; the relationships we’ve developed in moments at meetings, meals, and follow-up communications; the sacredness of this profound work we are privileged to share. And—with these current Potomac River tragic deaths—we are reminded of icy currents of own traumatic losses. For me, I’m struck with the pains of a beloved family in my childhood’s home church, whose adult son was killed in the 1982 Potomac River plane crash; with the heart-wrenching death of my grandfather when he was killed by a drunk driver; and more. For you? As news continues to unfold, may we treasure anew the unknown measure of our time on this earth. Of our connections with each other—whatever our differences—profit or nonprofit, political, and more. May we sensitively tune into the life-altering traumas carried within those we serve—and the healing compassion we can give. Humbly, Joy

Palliative care is essential for seriously ill patients—at any ageAMA (American Medical Association); by Kevin B. O'Reilly; 1/27/25 The AMA House of Delegates has adopted new policies outlining physicians’ ethical obligation to provide or seek optimal palliative care for patients with serious illnesses who can benefit from comprehensive management of pain and other distressing symptoms—not only those with terminal illnesses or on the precipice of death. “Physicians have clinical ethical responsibilities to address the pain and suffering occasioned by illness and injury and to respect their patients as whole persons,” says one of the new policies adopted at the latest AMA Interim Meeting, held in Lake Buena Vista, Florida. “These duties require physicians to assure the provision of effective palliative care whenever a patient is experiencing serious, chronic, complex or critical illness, regardless of prognosis.” 

Navigate a smooth transition from hospital to home care Health Medicine Network; 1/17/25 When discharged from hospital, a high proportion of people face emotions such as anxiety and fear, which can make the transition from hospital care to safe and appropriate home care difficult. But it doesn’t have to feel that way if you develop an effective strategy before you leave the hospital. ... 

Advance care planning among diverse U.S. older adults with varied cognition levelsAlzheimer's & Dementia; by Zahra Rahemi, Swann Arp Adams; 1/25Older adults from minority groups often experience elevated rates of chronic diseases and cognitive impairment, coupled with lower rates of engagement in advance care planning (ACP) and comfort care as they approach end of life... Our study revealed that individuals facing cognitive impairments exhibited lower rates of engagement in ACP. Notably, among the variables examined, race, ethnicity, rural residence, education, and age emerged as significant predictors of ACP in a national sample of older adults in the U.S. These findings underscore the importance of incorporating these sociodemographic factors into the design of interventional studies aimed at enhancing ACP and mitigating disparities.

The Alliance on CMS Hospice Special Focus Program Implementation: “Doubling down on a dangerous decision, eager to work with incoming administration to fix” National Alliance for Care at Home, Alexandria, VA and Washington, DC; Press Release; 1/16/25 The National Alliance for Care at Home (the Alliance) issued the following statement in response to the news of hospice providers filing litigation against the Centers for Medicare & Medicaid Services (CMS) over their flawed implementation of the Hospice Special Focus Program (SFP). The Alliance and the broader hospice community, who have been engaged on this program since its inception, have repeatedly shared concerns directly with CMS staff at all levels. They warned that this approach would inflict unnecessary harm to patient care, cause confusion to families when selecting a hospice provider to care for their loved ones at the end of life, and will cause some providers to sustain irreparable damage. These concerns have been echoed by lawmakers, providers, and the leading national hospice trade organizations. “With CMS doubling down on a dangerous course of action by proceeding with the Hospice SFP in its current state—and offering no due process or administrative recourse to address or mitigate its flaws—some hospice providers will suffer irreparable harm and have no choice but to seek justice through the courts on behalf of their patients and mission,” said Dr. Steve Landers, CEO of the Alliance. [Click on the title's link to continue reading.]

Nonprofit opens home-based care facility for hospice patients Fox KNWA-24/KFTA, Lowell, AR; by Justin Trobaugh; 1/17/25 A nonprofit organization introduced a new resource Jan. 17 for those in Northwest Arkansas who need home-based care. Circle of Life provides hospice and in-and-out patient care services, and it opened its Joey Feek Center for Home-Based Care in Lowell. The facility will serve 93% of the non-profit’s patients and was donated by the Willard and Pat Walker Charitable Foundation. 

Transition to hospice: how it impacts the mental health of caregivers of persons with dementiaAlzheimer's & Dementia; by Oonjee Oh, Debra Parker Oliver, Karla Washington, George Demiris; 2024In this study, we aimed to examine caregivers’ mental health indicators and their correlation structure based on the timing of hospice transition... In the context of dementia care, our results highlight that caregivers who just entered hospice are undergoing a challenging transition that often finds them in a mentally vulnerable position. To develop and implement effective strategies for caregivers of persons with dementia, we need to understand the needs and vulnerabilities of caregivers during hospice transition and identify the best timing for the delivery of supportive tools.

‘Those who have made death their life’ Part 2: Family The Daily Yonder - Keep It Rural; by Hannah Clark; 1/16/25 Hannah Clark spent six months riding along with the nurses and certified nursing assistants (CNAs) of Hearth Hospice who provide in-home care to those living in Northwest Georgia and Southeast Tennessee. These hospice workers often drive up to a hundred miles a day to visit a handful of patients scattered across the Appalachian landscape in both rural towns and urban centers. What will follow this introductory essay is her photo reportage in three parts, documenting what she has witnessed accompanying these caregivers. The intimate portraits and vignettes show tender moments at different stages towards the end of one’s life. Their beauty lies in the companionship Clark captured in moments of need and vulnerability. Editor's note: Click here for the Introduction, that we posted 1/16/25, and click here for Part 2: Hospice, that we posted 1/17/25.