Literature Review

Johnson champions Eddie's Law to bring dignity to end-of-life-care in Illinois Public, Springfield, IL; News Release; 5/22/25 After an incarcerated man named Eddie Thomas died alone in a prison infirmary without receiving any end-of-life care, State Senator Adriane Johnson is championing legislation to bring dignity, compassion, and transparency to hospice and palliative care services in Illinois correctional facilities. "This bill is about basic human dignity," said Johnson (D-Buffalo Grove). "No one should die in pain, in isolation or without the comfort of care - no matter who they are or where they live. House Bill 2397 brings transparency to a system that too often leaves people to suffer silently." ... House Bill 2397 would require the Illinois Department of Corrections to prepare and publish an annual report detailing its hospice and palliative care programs. The bill aims to provide lawmakers with data that can guide future policy decisions on compassionate and medically appropriate end-of-life care for people incarcerated in Illinois. 

[UK] An exploration of perceived impact of receiving complementary therapies on service users during the palliative and end-of-life care phaseInternational Journal of Palliative Nursing; Jason Vickers, Brian Nyatanga, Hayley Holden; 4/25Background: To explore and understand the narratives of service users in the hospice setting regarding the value they place on complementary therapies and their perceived impact on overall wellbeing. The benefits derived from complementary therapy sessions include managing anxiety and stress, developing better sleep strategies and devising coping techniques for personal situations and contexts through guided discussions and personal reflection. 

‘Wake-up call’: Aggressive cancer care common at end of life, supportive care lackingHealio; by Josh Friedman; 5/22/25Nearly half of people with advanced cancer receive aggressive care at the end of life, a rate little changed from a decade ago. At the same time, use of palliative or supportive care remains rare, despite increasing evidence that they are a key component of high-quality, patient-centered care. ... Meanwhile, two other studies showed oncologists’ individual practice patterns and institutional resources can play a significant role in determining which patients receive systemic therapy or early palliative care at the end of life.

New law will fast-track completion of hospice death certificatesFlorida Politics; by Drew Wilson; 5/21/25 Grieving families will spend less time waiting on paperwork come July 1.Gov. Ron DeSantis has signed legislation that would take some stress off palliative care physicians who guide patients through their final hours, as well as the grieving families they leave behind. Sponsored by Republican Rep. Dana Trabulsy, HB 647 would allow Advanced Practice Registered Nurses (APRNs) to complete and file death certificates for hospice care patients. Valid death certificates must record both time of death and cause of death before the deceased’s remains can be turned over to a funeral director. Under current law, a doctor must determine the cause of death and sign the certificate. That will remain the case after Trabulsy’s bill goes into effect July 1 for non-hospice deaths.

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.

Dying at home becomes more common for patients with history of ischemic stroke NeurologyToday; by Susan Fitzgerald; 5/15/25 In contrast to earlier studies showing a decline in stroke prevalence and mortality, a new study found that the rates are going up and more people, particularly Black Americans, are either dying at home or arriving to the hospital dead on arrival. Experts speculate that the trend may be driven by the lack of access to hospice services and care, in general.

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.

Nonprofit hospice home offers free, 24/7 end-of-life care to unhoused, low income Albuquerque Journal, Albuquerque, NM; by Gregory Hasman; 5/12/25 Dorothy Marquez has spent the last month with her brother Gerald Moya in a Downtown Albuquerque hospice home, reminiscing about their childhoods or his lime green 1964 Chevrolet Impala lowrider he loved to show off. Moya, 59, is battling stage 4 lung cancer and has days to live. ... Inhora is doing its best to ensure Moya feels comfortable. "I'm very happy because he's not in pain and he's not out there just laying on the road because that's what he'd probably be doing because we don't have a place to go," Marquez said. "We're both homeless." Since April, the hospice home on Tijeras NW, near Seventh Street, has served as a place for people who are unhoused or have low incomes to spend their final days with loved ones. "Our culture throws dying people away and hides them behind closed doors," said Miles Gloetzner, Inhora's founder and executive director. ""And they deserve better. They deserve dignity and compassion, ..."

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.