Literature Review

What caregivers should know about end-of-life rallies  AARP; by Jamie Ducharme; 5/19/25People with advanced illnesses sometimes experience unpredictable bursts of energy or clarity. Here’s how caregivers should handle these episodes. Roughly a decade after her mother was diagnosed with Alzheimer’s disease, Liz Donnarumma got her back — but only for an instant. It happened one evening in 2021, more than a year after Donnarumma first realized her mother, Theresa, didn’t recognize her. Theresa took Donnarumma’s face in her hands, called her by her nickname and thanked her. “When she put her hands on my face and I looked into her eyes, she was totally there. It was my mother,” Donnarumma says. “It was like a second, just one second, and it was gone.” Donnarumma’s mother had an episode of “paradoxical lucidity” — that is, an unexpected burst of mental clarity, despite her advanced condition. While these moments are as unexplained as they are unexpected, experts say they are more common than many people realize. ...

[Australia] Overtreatment of older people near end of life: A qualitative scoping review of modalities, drivers, and solutionsOmega-Journal of Death and Dying; Samantha Fien, Emily Plunkett, Daniel Wadsworth, Magnolia Cardona; 4/24This study aimed to understand the drivers better to help minimise further risks of overtreatment for older people near the end of life (dysthanasia). Determinants included healthcare system factors, patient-centered care, family and caregiver, and clinician perspectives. This review confirms that despite almost two decades of recognition of the potential harms of overtreatment near the end of life, society, patients, and health systems have a role to play in reducing and addressing the determinants. We offer a range of solutions for clinicians, health service managers, and members of the public to consider.

Finding her strength in silence: CSU Pueblo student graduates twice, carring her mother's dream Colorado State University Pueblo, Pueblo, CO; by Soni Brinsko; 5/14/25 The porch was still new when the professors arrived that late November evening. Hand-laid tiles, each one carefully placed by a father during what should have been vacation time. He’d built it for his wife so she could sit outside, feel the Colorado breeze one more time. That night, the porch became something else entirely. It became a stage for a graduation ceremony that wasn’t supposed to happen until May. Alondra Solis Ayala is about to walk across the commencement stage at Colorado State University Pueblo this week. It will be her second graduation. The first one happened in her family’s living room, with her dying mother watching from a chair, too weak to stand but strong enough to declare “esa es mi hija”—that’s my daughter—as faculty members in full regalia handed over a diploma cover and stole in what became an impromptu, deeply personal ceremony.

Palliative and end-of-life care during critical cardiovascular illness: A scientific statement from the American Heart Association American Heart Association; by Erin A. Bohula, MD, DPhil, Michael J. Landzberg, MD, Venu Menon, MD, FAHA, Carlos L. Alviar, MD, Gregory W. Barsness, MD, FAHA, Daniela R. Crousillat, MD, Nelia Jain, MD, MA, Robert Page II, PharmD, MSPH, FAHA, Rachel Wells, PhD, MSN, and Abdulla A. Damluji, MD, PhD, MBA, FAHA on behalf of the American Heart Association Acute Cardiac Care and General Cardiology Committee of the Council on Clinical Cardiology; and Council on Cardiovascular and Stroke Nursing; 5/15/25 Abstract: Cardiac intensive care units are witnessing a demographic shift, characterized by patients with increasingly complex or end-stage cardiovascular disease with a greater burden of concomitant comorbid noncardiovascular disease. Despite technical advances in care that may be offered, many critically ill cardiovascular patients will nevertheless experience significant morbidity and mortality during the acute decompensation, including physical and psychological suffering. Palliative care, with its specialized focus on alleviating suffering, aligns treatments with patient and caregiver values and improves overall care planning. Integrating palliative care into cardiovascular disease management extends the therapeutic approach beyond life-sustaining measures to encompass life-enhancing goals, addressing the physical, emotional, psychosocial, and spiritual needs of critically ill patients. This American Heart Association scientific statement aims to explore the definitions and conceptual framework of palliative care and to suggest strategies to integrate palliative care principles into the management of patients with critical cardiovascular illness.

Dementia patient discharged from hospice over Medicare requirement. Here’s why it happened WKMG-6, Deltona, FL; by Erika Briguglio and Louis Bolden; 5/14/25A Volusia County family is left scrambling after their loved one is abruptly dropped from hospice care. To qualify for hospice, patients must have a life expectancy of six months or less. However, for dementia patients, the prognosis can be unpredictable. Hospice care can be extended as long as the patient continues to meet Medicare requirements. Unfortunately, these requirements are why Amy Yates lost coverage for her 91-year-old grandmother. ... “I think it’s she hasn’t died fast enough, and it’s costing them money that they don’t want to spend,” Yates told News 6. ... What Yates’ family is dealing with is what Medicare calls live discharge, and they are not alone. The Hospice Foundation of America reports that 17% of people in 2022 who were admitted to hospice care were discharged; about 6% of the total caseload was discharged because they no longer met Medicare requirements for care under the hospice benefit.Editor's note: What are your hospice stats for live discharges? For Length of Stay (LOS)? This factor--with the face-to-face recertification requirement--is crucial. Unfortunately, many hospices misused President Jimmy Carter's extraordinarily long LOS with misleading information about hospice care. They watered down "end-of-life" care and never mentioned anything about a basic recertification process. Warm, user-friendly language can be used with integrity, authenticity, and patient/caregiver support.

AI tool uses face photos to estimate biological age and predict cancer outcomes Mass General Brigham - Technology & Innovation - Research; by Hugo Alerts, Ray Mak, Dennis Bontempi, Osbert Zalay, Danielle S. Bitterman, Fridolin Haugg, Jack M. Qian, Hannah Roberts, Subha Perni, Vasco Prudente, Suraj Pai, Christian Guthier, Tracy Balboni, Laura Warren, Monica Krishan, and Benjamin H. Kann; 5/8/25 Mass General Brigham findings suggest FaceAge tool could provide objective data to help inform treatment decisions in cancer care and other chronic diseases. Eyes may be the window to the soul, but a person’s biological age could be reflected in their facial characteristics. Investigators from Mass General Brigham developed a deep learning algorithm called FaceAge that uses a photo of a person’s face to predict biological age and survival outcomes for patients with cancer. They found that patients with cancer, on average, had a higher FaceAge than those without and appeared about five years older than their chronological age. Older FaceAge predictions were associated with worse overall survival outcomes across multiple cancer types. They also found that FaceAge outperformed clinicians in predicting short-term life expectancies of patients receiving palliative radiotherapy. Their results are published in The Lancet Digital Health.Editor's note: This summary article is published by the main source, Mass General Brigham. Various articles are being written about this new use of AI.

I held my wife's hand as she died. It was the most painful moment in my life, but also the greatest gift.Yahoo!Life; by Juan Cruz, Jr.; 4/13/25

A daughter’s cautionary elder care tale The Progressive Magazine - Book Review; by Bill Lueders; 5/12/25 The call that woke Judy Karofsky in the middle of the night on May 18, 2015, was from a hospice nurse, who got right to the point: “I’m calling to tell you that your mother has died.” Karofsky, deeply shaken by the unexpected news, managed to ask, “Did she struggle?” Karofsky’s important new book, DisElderly Conduct: The Flawed Business of Assisted Living and Hospice, does not mention the hospice nurse’s response to this question. But it does note that she called back a moment later to say: “I’m so sorry . . . . I called the wrong number. I’m at a different facility and I had the wrong file.” Karofsky’s mother, Lillian Deutsch, had not died at all. It was someone else’s mother. Apologies were made. This is just one of many stories Karofsky shares throughout the book about the final years of her mother’s life in Wisconsin. This particular anecdote strikes me as noteworthy not just as an example of the sort of awful things that can happen when facilities are understaffed and staff members are overworked, but also because Karofsky’s first reaction was to wonder whether she struggled.Editor's note: Though printed news typically lifts up the good, compassionate moments of hospice care, most all of us have experienced negative accounts--professionally and/or personally. While this book is sure to give significant insights, perhaps the most important lessons are waiting to be validated from your own family caregivers, employees, and volunteers. What stories are behind your lower-than-you-want CAHPS Hospice scores? Dig deeper. May we all listen, learn, and improve care.

Donate Life Ceremony celebrates organ donors and their families Vanderbilt University Medical Center; by Matt Batcheldor; 5/6/25 In addition to honoring organ donors and their families, the ceremony salutes hospital staff who care for donors and transplant recipients. Seventy-one individuals donated their organs at Vanderbilt University Medical Center in 2024, and they and their families were saluted on April 30 at the annual Donate Life Ceremony. “Those 71 donors resulted in 235 lives that were saved,” said C. Wright Pinson, MBA, MD, Deputy Chief Executive Officer and Chief Health System Officer for VUMC. ...  In addition to that, there were another 191 individuals who made the remarkable gift of tissue donation … which restored sight to the blind, enhanced the lives of burn victims, and gave mobility to those with bone and joint injuries.” ... The ceremony, held in the lobby of Langford Auditorium, was part of a national effort to raise awareness about the need for organ and tissue donors.

To the brink and back: How near-death experiences can change how people work The Conversation; by Adauri.AI; 5/5/25 What happens when someone comes close to death and then returns to everyday life, including work? For some, the experience can be transformative. ... Although near-death experiences (NDEs) have been studied since the 1970s, we know relatively little about how they affect people after the event. Research suggests people who have near-death experiences may feel increased empathy, spiritual growth, a sense of purpose and even change how they approach their jobs. Our recent study explored how near-death experiences impact people’s return to work. We interviewed 14 working adults who had a near-death experience as a result of medical crises such as a heart attack or accidents such as a car crash. What we found challenges conventional ideas about success, motivation and workplace culture.

Pharmacist-led care in palliative settings: Using anticholinergics thoughtfully and compassionately Pharmacy times; by Diana Violanti, PharmD, Pamela S. Moore, PharmD, BCGP, and Alana Hippensteele; 5/5/25 The use of anticholinergic agents to manage terminal secretions, often referred to as the death rattle, remains a nuanced and evolving area of end-of-life care. While these medications are frequently used in hospice and palliative care settings to reduce secretion-related sounds that may be distressing to caregivers, their efficacy in improving patient comfort is less clear and often debated. ... Diana Violanti, PharmD, and Pamela S. Moore, PharmD, BCGP, discuss the nuanced use of anticholinergic agents for managing terminal secretions at end of life, highlighting practical considerations, timing, safety concerns such as delirium, and the limited yet evolving evidence supporting their role in palliative care.

Breaking with the status quo in end-of-life care through de-implementation Journal of Internal Medicine; by Chetna Malhotra and Ellie Bostwick Andres; 4/17/25... In the realm of serious illness, many patients undergo interventions that may marginally prolong life but often sacrifice quality of life and entail significant costs. These interventions, categorized as ‘low-value care’, often involve complex procedures, frequent hospitalizations and intense medical management, leading to considerable discomfort, reduced functional ability and overall decreased well-being and calling into question the efficiency and effectiveness of current end-of-life (EOL) care practices. ... How to conduct de-implementation in EOL contexts:

Hospice use by cause of death: A cohort study using Utah population database American Journal of Hospice and Palliative Medicine - Sage Journals; by Rebecca L. Utz, PhD, Michael Hollingshaus, PhD, Attrayee Bandyopadhyay, MS, Kathie Supiano, PhD, Margaret Clayton, PhD, Katherine A. Ornstein, PhD, Djin Tay, PhD, Eli Iacob, Ken Smith, PhD, and Caroline Stephens, PhD; first published online 4/29/25 Illnesses such as cancer often follow a predictable trajectory of decline, while others, such as Alzheimer’s Disease and Related Dementias (ADRD) and Chronic Obstructive Pulmonary Disease (COPD), follow a more dwindling and protracted decline. ... This study assesses whether hospice use differs by the underlying cause of death and whether current hospice eligibility and practices provide optimal EOL to all causes of death. Major Findings: Non-cancer decedents were more likely to have sub-optimal patterns of hospice care, including minimal use, lasting less than a week, and extended use, lasting more than 6 months. Stroke decedents were the most likely to have minimal-use patterns of hospice, whereas dementia and COPD decedents were most likely to have extended use. Conclusion: New models of hospice-like EOL care that can accommodate both short-term and long-term palliative care needs may help meet the diverse needs of patients and families facing different EOL trajectories associated with common causes of death.Editor's note: Compare this data with your own data of disease-related Length of Stay (LOS), live discharges, disease-related accuity needs, and more. How can we improve disease-related patient care, across the different trajectories of palliative/hospice care?