Literature Review

Study raises questions about GUIDE model’s helpfulness for caregivers of loved ones with dementia McKnights Home Care; by Adam Healy; 4/1/25 The Guiding an Improve Dementia Experience may need to be fine-tuned to better serve caregivers of those living with dementia, according to a new study published in Alzheimer’s & Dementia. The researchers identified 565 older adults and 555 caregivers eligible for GUIDE using data from the 2022 National Health and Aging Trends Study and National Study of Caregiving. They found that approximately half of GUIDE-eligible people with dementia received care from two or more caregivers, and about a third of these caregivers reported experiencing high caregiving strain. [Continue reading ...] 

What to know about palliative and hospice care Association of Health Care Journalists (AHCJ); by Liz Seegert; 3/28/25 ... [Palliative care] is fundamental to health and human dignity and is a basic human right, according to the FXB Center for Health and Human Rights at Harvard.  When reporting on serious illnesses, journalists can help demystify palliative care and encourage more people in need to take advantage of it by clearly explaining the differences, and benefits, and incorporating anecdotes to further illustrate how these types of care make a difference in the lives of patients and their families. [Continue reading ...] Editor's note: Share this article--written for health care journalists--with your communications and marketing leadership, with your community newspapers' journalists, and your employee/volunteer educators. Too often, new hospice/palliative care employees at all levels of roles and responsibilities begin their roles without clear knowledge, comprehension, and application of distinctions between standard healthcare, palliative care, and hospice care.  

Honoring a young girl’s love of nature on her final dayMayo Clinic News Network; by Mayo Clinic Staff; 3/27/25 On a Saturday evening in September of 2024, Mae Helgeson arrived at Mayo Clinic in Rochester, her small body reeling from the trauma of a life-threatening accident. Although she was intubated and sedated, it didn't take long for the care team to learn what made this little girl special. ... "I often ask parents to tell me about their child. Is there anything you think is important or that I should know about your family?" says Paige Dighton, one of the Child Life specialists who partnered with Mae's family. "This allows them to share the special things — those unique qualities that make them a family. You learn more than just what's in their chart." ... It was only a couple of days later that Mae's family was faced with the devastating decision they'd hoped to avoid. ... The question shifted from "Can we save her?" to "How do we say goodbye?" Following their lead, the team began focusing on end-of-life care. "Dr. Schiltz gave us the space to think and process our emotions — it didn't feel rushed," says Matt. 

Bioethics Artificial Intelligence Advisory (BAIA): An Agentic Artificial Intelligence (AI) framework for bioethical clinical decision support Cureus; by Taposh P. Dutta Roy; 3/12/25 Healthcare professionals face complex ethical dilemmas in clinical settings in cases involving end-of-life care, informed consent, and surrogate decision-making. These nuanced situations often lead to moral distress among care providers. This paper introduces the Bioethics Artificial Intelligence Advisory (BAIA) framework, a novel and innovative approach that leverages artificial intelligence (AI) to support clinical ethical decision-making. The BAIA framework integrates multiple bioethical approaches, including principlism, casuistry, and narrative ethics, with advanced AI capabilities to provide comprehensive decision support. 

Population-based payments to deliver health care to unhoused individualsJAMA Health Forum; Sudhakar V. Nuti, MD, MSc; Amanda K. Johnson, MD, MBA; Theodore Long, MD, MHS; 3/25The 770,000 people experiencing homelessness in the US have a high prevalence of disease and high health care utilization. Compared to the general population, unhoused individuals in the US have a 3.5 times higher mortality rate and 27-year reduced life expectancy. To this end, we propose population-based payment models (PBPs) as a novel mechanism to provide increased, stable, and predictable funding for health care for unhoused individuals. PBPs are the most advanced category of value-based alternative payment models, where health care organizations are given a prospective payment to care for a population of patients, with the flexibility to tailor care without incentivizes to optimize billable encounters, while being held accountable for improved outcomes and costs. The flexibility in how to invest and earn funding is essential for focused investment in these models, as increased reimbursement alone is insufficient.

Quality of life in heart failure. The heart of the matter. A scientific statement of the Heart Failure Association and the European Association of Preventive Cardiology of the European Society of CardiologyEuropean Journal of Heart Failure; Maurizio Volterrani, Geza Halasz, Stamatis Adamopoulos, Pier Giuseppe Agostoni, Javed Butler, Andrew J.S. Coats, Alan Cohen-Solal, Wolfram Doehner, Gerasimos Filippatos, Ewa Jankowska, Carolyn S.P. Lam, Ekaterini Lambrinou, Lars H. Lund, Giuseppe Rosano, Marco Metra, Stefania Paolillo, Pasquale Perrone Filardi, Amina Rakisheva, Gianluigi Savarese, Petar Seferovic, Carlo Gabriele Tocchetti, Massimo Piepoli; 3/25 Patients with heart failure (HF) experience much worse QoL [quality of life] and effort intolerance than both the general population and people with other chronic conditions, since they present a range of physical and psychological symptoms, including shortness of breath, chest discomfort, fatigue, fluid congestion, trouble with sleeping, and depression. The importance of QoL for patients with HF is highlighted in a survey showing that 61% attached more weight to QoL over longevity, with 9% and 14% willing to trade 6 and 12 months, respectively, for perfect health and better QoL.It is for these reasons that the Heart Failure Association is developing a new score for QoL in HF, sensitive to mechanism-specific interventions and tailored to be sensitive to changes within individual patients. 

Hidden battles: Keeping cancer secret Harvard Health Publishing - Harvard Medical School; by Maureen Salamon; post is dated 4/1/25, retrieved from the internet 3/25/25 Some people choose to conceal their diagnosis and treatment. Here's why — and reasons that approach can sometimes backfire. ... [In addition to privacy motives, Cristina Pozo-Kaderman, a senior psychologist at Harvard-affiliated Dana-Farber Cancer Institute] says cancer patients may also wish to:

Avoidable mortality rises in US, bucking global decline Becker's Clinical Leadership; by Mackenzie Bean; 3/26/25 Avoidable mortality has increased in the U.S. for more than a decade, contrasting decreases seen in many other high-income countries, according to a study published March 24 in JAMA Internal Medicine. For the study, researchers at the Brown University School of Public Health analyzed mortality data from the CDC and World Health Organization for people 74 and younger between 2009 and 2021, spanning all 50 states and 40 high-income countries. Avoidable mortality includes deaths that could have been prevented through effective public health measures or timely, high-quality healthcare. [Continue reading ...]

The COVID mistake no one talks enough about The Atlantic; by Sunita Puri; 3/25/25 Deaths in isolation have been treated as a painful memory, not as a problem that hospitals need to address. He was one of the few ICU patients whose face I saw in early 2021, when COVID raged through Los Angeles. As a palliative-care physician, my job was to meet, over Zoom, with the families of intubated patients to ensure that they had complete medical updates and to help them make difficult medical decisions on behalf of their loved one, particularly when that person faced death. But in a surreal departure from my usual practice, I’d never once seen these patients myself: At the time, to minimize exposure to COVID, the only people permitted to enter the ICU regularly were members of the ICU team. ... His wife told me that during his many previous illnesses, she had slept every night in his hospital room, making sure he asked for pain medications and watching movies with him to pass the time. “He fought harder to live when I was there,” she told me. [Continue reading ... full access may require a free trial or subscription]

Carolyn Hax: Does sibling love justify traveling to abusive mom’s deathbed?The Washington Post, Washington, DC; 3/24/25 Sister asks the letter writer to join her at their dying mom’s bedside — despite their PTSD-inducing childhoods. [The rest of this article may require a subscription to The Washington Post.]Editor's note: Even if you're not able to access the full article, what does this question stir in you? Be aware that many family caregivers (or simply family members) face complex, conflicted relationships with the persons they are tending--or in this case, even considering visiting or not. Be attuned to these common, everyday occurrences that your direct care interdisciplinary team members regularly navigate. What family systems' education and support do you provide for them?

Hospice of the Panhandle gets van through grant The Journal, Martinsburg, WV; 3/19/25 As a result of a generous state Local Economic Development Assistance (LEDA) grant secured by state Sens. Jason Barrett and Patricia Rucker and former state Sen. Craig Blair, Hospice of the Panhandle was able to purchase this 2025 Toyota Sienna custom van, designed for non-emergency transportation. Since coming into service on March 1, the van has transported 15 patients to and from area hospitals to Hospice’s Inpatient Facility and from the IPF to patients’ homes. “We are so excited to provide this much-needed service,” said CEO Nikki Bigiarelli. “It assures that we can get patients into hospice care, to our facilty and to their homes safely and quickly.”  

Nursing home residents, family members, and staff members views about a good death and preferred place of death for a nursing home residentOmega-Journal of Death and Dying; Janet Sopcheck, Ruth M. Tappen; 2/25Our study ... revealed that residents, like family members and staff members, had mixed opinions of the place of death for the NH resident, highlighting the importance of having advance care planning sessions with residents and their families to gain an understanding regarding their choices. Our study found the predominant and common qualities across the three participant groups of a good death include painless or pain-free, without suffering, peaceful, quiet, and dying in my sleep. Interestingly, almost one-fifth of the participants disagreed with the term good death, offering that death is not good as the person is no longer alive. Based on this study’s finding, using the term a good death in research and in advance care planning sessions may not be relevant or appropriate and instead focus on what care is necessary to promote a natural death, as mentioned by a few participants.

[Australia] Advance care planning has brought 'comfort and peace' to Annaliese Holland ABC News; by Eva Blandis and Daniel Keane; 3/19/25Young South Australian woman Annaliese Holland, who is preparing for major high-risk surgery, has spoken about the importance of advance care planning. The 25-year-old was diagnosed with a rare autoimmune disease and terminal illness several years ago. Ms. Holland wants young people to have more open conversations about death and end-of-life care. ... "I say my life is like walking on a field of landmines, not knowing when it will go off,"  she said. While it is a harrowing statement, she is harnessing her situation to help others — Ms. Holland is a strong supporter of advance care planning.