Literature Review



Transition to hospice: how it impacts the mental health of caregivers of persons with dementia

01/26/25 at 03:15 AM

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.

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Hospice agency changes of ownership: An analysis of publicly available ownership data

01/26/25 at 03:10 AM

Hospice agency changes of ownership: An analysis of publicly available ownership data Assistant Secretary for Planning and Evaluation: Office of Behavioral Health, Disability, and Aging Policy; 1/10/25 Key Points:

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‘Those who have made death their life’ Part 2: Family

01/26/25 at 03:05 AM

‘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.

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Today's Encouragement

01/26/25 at 03:00 AM

If... by Rudyard KiplingIf you can keep your head when all about you    Are losing theirs and blaming it on you, If you can trust yourself when all men doubt you,   But make allowance for their doubting too; [Click the link above for the entire poem.]

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Sunday newsletters

01/26/25 at 03:00 AM

Sunday newsletters focus on headlines and top read stories of the last week (in order) - enjoy!

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Transforming care: Spencer Health Solutions and Pharmerica partner to simplify medication management and improve lives

01/26/25 at 03:00 AM

Transforming care: Spencer Health Solutions and Pharmerica partner to simplify medication management and improve lives The MarCom Journal, Morrisville, NC; by Leigh White, PharMerica and Daphne Earley, Spencer Health Solutions; 1/21/25In a move set to redefine how medication is managed, Spencer Health Solutions (SHS), a leader in innovative healthcare technology, and PharMerica, one of the nation’s largest and most trusted long-term care pharmacy services provider, are joining forces. This transformative partnership aims to make managing medications easier and more reliable for individuals with complex medication needs, senior living communities, and payers nationwide. ... Spencer Health Solutions (SHS) is dedicated to transforming medication management through innovative healthcare technology. ... PharMerica ... serves the long-term care, senior living, hospital, home infusion, hospice, behavioral, specialty and oncology pharmacy markets. 

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Today's Encouragement

01/25/25 at 03:55 AM

Remember that other people may be totally wrong. But they don’t think so. Don’t condemn them. Any fool can do that. Try to understand them. Only wise, tolerant, exceptional people even try to do that. ~Dale Carnegie

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Illness, and poetry, can transform us

01/25/25 at 03:45 AM

Illness, and poetry, can transform usJAMA; Rafael Campo, MD, MA; 1/25... just as illness may alter our bodies and minds in unknowable ways, so can poetry subject us to the unexpected—through metaphor, imagery, and form—and thus can be indispensable as a guide to those in medicine seeking to provide empathetic care. Poetry becomes transformational, the shape-shifting text itself embodying the seemingly incomprehensible, making the father’s dementia and the speaker’s sense of grief, anger, and loss ultimately palpably human. Though perhaps readers can’t fully grasp the experience of Alzheimer disease, or losing one’s parent to its ravages, through poetry we can feel restored and heartened by its transformative power, “saying yes yes/we could live anywhere.”

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Stories of bereavement: Examining medical students’ reflections on loss and grief

01/25/25 at 03:40 AM

Stories of bereavement: Examining medical students’ reflections on loss and griefOmega-Journal of Death and Dying; Johanna Shapiro, Nicholas Freeman, Alexis Nguyen, Nancy Dang, Yasaman Lorkalantari; 12/24Medical students in this study reported similar reactions to personal and professional loss, with some expected differences, such as students who experienced professional loss more often noting compassion for others and more frequently discussing managing the feelings of others, the importance of skill acquisition, processing personal emotions and team support. Students experiencing personal loss understandably appeared more focused on their own grief and more often commented about feelings of helplessness and numbness. Students in both groups reported little about how they coped with their grief or about receiving either informal or institutional support. The similarity of the essays, while due to many factors, may suggest internalizing pressures to conform to socially desirable narratives. Medical educators and clinical supervisors should help students develop effective coping skills in response to loss, provide better institutional support, and encourage students to tell authentic stories about their experiences of loss and grief. 

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Medicaid unwinding experiences in dual-eligible older adults

01/25/25 at 03:35 AM

Medicaid unwinding experiences in dual-eligible older adultsJAMA Health Forum; Renuka Tipirneni, MD, MSc; Wendy Furst, MA; Dominic A. Ruggiero, MPH; Dianne C. Singer, MPH; Erica Solway, PhD, MSW, MPH; Erin Beathard, MPH, MSW; Syama R. Patel, MPH; Andrei R. Stefanescu, PhD, MS; Jeffrey T. Kullgren, MD, MS, MPH; John Z. Ayanian, MD, MPP; Eric T. Roberts, PhD; 1/25This US national survey of low-income older adults found varying awareness of and experiences with the Medicaid unwinding process and identified cost-related access barriers among those who recently lost Medicaid. By 9 to 10 months into the unwinding process, few older adults reported hearing a lot about Medicaid unwinding and many reported not receiving any communication about needing to renew Medicaid eligibility. By the time of our survey, slightly less than half of respondents had completed a Medicaid renewal. Although the proportion of respondents who said they lost Medicaid in the last 6 months was relatively low, those who lost Medicaid were more likely to report cost-related difficulty getting care. These findings highlight the importance of addressing informational and navigational barriers among dual-eligible older adults to avoid disruptions in Medicaid coverage that may contribute to difficulties accessing care. 

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The 2024 election and potential battle for the social safety net

01/25/25 at 03:30 AM

The 2024 election and potential battle for the social safety netJAMA Health Forum; Sara N. Bleich, PhD; Benjamin D. Sommers, MD, PhD; Rita Hamad, MD, PhD; 1/25Federal safety net programs play a major role in providing nutrition assistance, health insurance, income support, and much more to tens of millions of people with low incomes, including children, parents, and adults with disabilities or chronic conditions. Trump’s return to office for a second term with a Republican-controlled Senate and House leaves the future of the US social safety net unclear. Clinicians and public health professionals should elevate and advance strong evidence about the positive effects of the social safety net and the likely harms that would ensue if access or benefits are reduced.

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Interoception, cardiac health, and heart failure: The potential for artificial intelligence (AI)-driven diagnosis and treatment

01/25/25 at 03:25 AM

Interoception, cardiac health, and heart failure: The potential for artificial intelligence (AI)-driven diagnosis and treatmentPhysiological Reports; Mahavir Singh, Anmol Babbarwal, Sathnur Pushpakumar, Suresh C Tyagi; 1/25"I see, I forget, I read aloud, I remember, and when I do read purposefully by writing it, I do not forget it." This phenomenon is known as "interoception" and refers to the sensing and interpretation of internal body signals, allowing the brain to communicate with various body systems. Dysfunction in interoception is associated with cardiovascular disorders. In the context of HF [heart failure], AI algorithms can analyze and interpret complex interoceptive data, providing valuable insights for diagnosis and treatment. By leveraging patient data, AI can personalize therapeutic interventions.

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Medical professionals’ perceptions of and experiences with terminally ill Orthodox Jewish patients

01/25/25 at 03:20 AM

Medical professionals’ perceptions of and experiences with terminally ill Orthodox Jewish patientsAmerican Journal of Hospice and Palliative Medicine; Moshe C. Ornstein, MD, MA; David Harris, MD; 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.

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The role of health care stereotype threat in end-of-life planning among older sexual minority adults

01/25/25 at 03:15 AM

The role of health care stereotype threat in end-of-life planning among older sexual minority adultsInnovation in Aging; Meki Singleton; 12/24Healthcare stereotype threat (HCST), defined as “the threat of being reduced to group stereotypes within healthcare encounters”, may occur when social identities negatively impact healthcare experiences. Prior research has shown that individuals report experiencing HCST related to age, gender, weight, race/ethnicity, HIV status, and sexual orientation. Findings demonstrate that HCST may negatively impact comfort in healthcare decision-making while also potentially motivating older SM [sexual minority] adults to formally engage in ACP [advance care planning]. Research is needed to investigate the barriers and challenges to engaging in ACP among older SM adults and interventions to reduce HCST. 

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Dying at home: A family guide for caregiving

01/25/25 at 03:10 AM

Dying at home: A family guide for caregivingJohn Hopkins University Press; by Andrea Sankar with CM Cassady; 2/24A comprehensive guide for those caring for a loved one nearing the end of life. Many people seek the comfort and dignity of dying at home. Advances in pharmacology and hospice care allow the dying to remain at home relatively free of pain and symptoms, but navigating professional services, insurance coverage, and family dynamics often compounds the complexity of this process. Extensively updated and revised, this third edition of Andrea Sankar's Dying at Home: A Family Guide for Caregiving provides essential information that caregivers and dying persons need to navigate this journey.

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Disproportionate use of aid in dying among people with ALS: Why ALS aid-in-dying requests are common while ALS is rare

01/25/25 at 03:10 AM

Disproportionate use of aid in dying among people with ALS: Why ALS aid-in-dying requests are common while ALS is rareJournal of Aid-in-Dying Medicine; Carolyn Rennels, MD; Steven Z. Pantilat, MD FAAHPM, MHM; Ambereen K. Mehta, MD, MPH, FAAHPM; Allison Kestenbaum, MA, MPA, BCC-PCHAC, ACPE; Kelsey Noble, DO; Jessica Besbris, MD; Ali Mendelson, MD; Kara Bischoff, MD; 12/24People with amyotrophic lateral sclerosis (ALS) disproportionately use aid in dying. We explore aspects of the ALS experience that may help explain the higher rates of aid-in-dying requests in this disease relative to others. In particular, the desire to maintain control is prominent in the face of a relentlessly progressive disease that results in substantial disability. We also describe how the requirement for self-administration of aid-in-dying medications impacts people with ALS.

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High-cost cancer drug use in Medicare Advantage and traditional Medicare

01/25/25 at 03:05 AM

High-cost cancer drug use in Medicare Advantage and Traditional MedicareJAMA Health Forum; Cathy J. Bradley, PhD; Rifei Liang, MA; Richard C. Lindrooth, PhD; Lindsay M. Sabik, PhD; Marcelo C. Perraillon, PhD; 1/25Traditional Medicare’s (TM) fee-for-service reimbursement encourages clinicians to provide higher-cost care, including prescribing expensive drugs when similar less expensive drugs are available. Medicare Advantage (MA) plans, where beneficiaries receive managed care almost exclusively from in-network hospitals and clinicians, were designed to reduce costs by paying a risk-adjusted capitated amount per member. In this cohort study of 4,240 patients with colorectal cancer (CRC) or non–small cell lung cancer (NSCLC), those with local or regional CRC who were insured by MA were less likely to receive a cancer drug, and of those patients, were less likely to receive a high-cost cancer drug than similar patients who were insured by TM. Patients diagnosed with distant NSCLC were less likely to receive a cancer drug if insured by MA compared to TM. MA appears to reduce high-cost drug utilization to treat patients with CRC, but not to treat those with NSCLC, in which few low-cost treatments exist.

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[Netherlands] Requests for medical assistance in dying by young Dutch people with psychiatric disorders

01/25/25 at 03:05 AM

Requests for medical assistance in dying by young Dutch people with psychiatric disordersJAMA Psychiatry; Lizanne J.S. Schweren, PhD; Sanne P.A. Rasing, PhD; Monique Kammeraat, BSc; Leah A. Middelkoop, MSc; Ruthie Werner, MSc; Saskia Y.M. Mérelle, PhD; Julian M. Garcia, MD; Daan H.M. Creemers, PhD; Sisco M.P. van Veen, MD, PhD; 1/25This cohort study found that the number of young psychiatric patients in the Netherlands who requested MAID-PS [medical assistance in dying based on psychiatric suffering] increased between 2012 and 2021 and that applications were retracted or rejected for most. Those who died by MAID or suicide were mostly female and had long treatment histories and prominent suicidality. These findings suggest that there is an urgent need for more knowledge about persistent death wishes and effective suicide prevention strategies for this high-risk group.

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FTC releases second interim staff report on prescription drug middlemen: Report finds PBMs charge significant markups for cancer, HIV, and other critical specialty generic drugs

01/25/25 at 03:00 AM

FTC releases second interim staff report on prescription drug middlemen: Report finds PBMs charge significant markups for cancer, HIV, and other critical specialty generic drugsFTC press release; by FTC staff; 1/14/25Staff’s latest report found that the ‘Big 3 PBMs’—Caremark Rx, LLC (CVS), Express Scripts, Inc. (ESI), and OptumRx, Inc. (OptumRx)—marked up numerous specialty generic drugs dispensed at their affiliated pharmacies by thousands of percent, and many others by hundreds of percent. Such significant markups allowed the Big 3 PBMs and their affiliated specialty pharmacies to generate more than $7.3 billion in revenue from dispensing drugs in excess of the drugs’ estimated acquisition costs from 2017-2022. The Big 3 PBMs netted such significant revenues all while patient, employer, and other health care plan sponsor payments for drugs steadily increased annually, according to the staff report. Key Findings include:

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[Sweden] The process of pain assessment in people with dementia living in nursing homes: A scoping review

01/25/25 at 03:00 AM

[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%. This scoping review provides a comprehensive description of pain assessment in people with dementia living in nursing homes as a process in three steps. 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.

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Saturday newsletters

01/25/25 at 03:00 AM

Saturday newsletters focus on headlines and research - enjoy!

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Clarinda health center honors Fulks for family donation

01/24/25 at 03:15 AM

Clarinda health center honors Fulks for family donation Maryville Forum, Clarinda, IO; 1/22/25 The Clarinda Regional Health Center announced last week that the recent remodel of its hospice suite and family room was made possible through a donation from the Jimmy and Lora Lea Fulk family. According to a news release from the hospital, the transformed space is a lasting tribute to the Fulks, reflecting on their values of faith, family and perseverance. The renovation, funded by Joyce Fulk Whitney, Dale Fulk, Alice Fulk Wisner and Nancy Fulk McKinnon in honor of their parents, ensures that the hospice suite and family room are not only more functional, but also provides a sanctuary for those in need of comfort and solace, the news release stated. 

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Policy priorities for the first 100 days

01/24/25 at 03:00 AM

Policy priorities for the first 100 daysC-TAC press release; 1/20/25The first 100 days of the Trump Administration and 119th Congress offer a pivotal opportunity to enact bold policies that improve the quality of care for individuals with serious illness while reducing overall healthcare costs. By addressing key policy priorities, we can create a healthcare system that delivers better outcomes for patients and families. C-TAC calls on policymakers to act now to advance solutions in the following areas:

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Barry Goldberg, blues-rock keyboardist whose work with Bob Dylan included controversial Newport '65 Concert, dies at 83 [with hospice care]

01/24/25 at 03:00 AM

Barry Goldberg, blues-rock keyboardist whose work with Bob Dylan included controversial Newport '65 Concert, dies at 83 [with hospice care] Variety; by Chris Willman; 1/23/25 Barry Goldberg, a blues-rock keyboard player whose work with the Paul Butterfield Blues Band led to playing with Bob Dylan in the 1960s, including the notorious 1965 Newport Folk Festival concert dramatized in "A Complete Unknown," died Wednesday [1/23] at 83. Bob Merlis, a representative, said that Goldberg died in hospice care after a 10-year struggle with non-Hodgkin lymphoma, with his wife of 53 years, Gail Goldberg, and son, Aram, at his bedside.

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Virtual nursing could upend traditional staff ratios

01/24/25 at 03:00 AM

Virtual nursing could upend traditional staff ratiosBecker's Clinical Leadership; by Paige Twenter; 1/13/25In conversations about virtual, team-based nursing services, the term "nurse-to-patient ratios" is an anachronism, according to nursing leaders at Providence and Trinity Health. Within the traditional primary nursing model, a virtual mountain of research demonstrates low nurse-to-patient ratios bolster safety and quality of care. However, as new virtual programs emerge and pick up steam, new research indicates that virtual nursing models improve communication, safety and quality — all without assigning a ratio.

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