Literature Review

A qualitative study to characterize the experiences of patients and caregivers with dementia diagnostic disclosure communication and care planningJournal of Geriatric Psychiatry and Neurology; by Joanna Paladino, Heily Chavez Granados, Jade A Connor Eruchalu, Carine Davila, Liliana Ramirez Gomez, Alissa Bernstein Sideman, Daniel Dohan, Elizabeth Lindenberger, Lindsay Dow, Ana-Maria Vranceanu, Deborah Blacker, Christine S Ritchie; 10/15/25Clinician communication at the time of a dementia diagnosis often inadequately addresses patient and caregiver needs. We aimed to characterize the communication experiences of patients and caregivers affected by dementia using an evidence-based serious illness communication framework... Dementia diagnostic disclosure would benefit from a structured yet tailored communication approach that prioritizes respectful communication, emotional support, and comprehensive care planning to meet the needs of patients and caregivers.

[Netherlands] Treatment satisfaction with nonoperative management of suspected hip fractures in nursing home patients with a Do-Not-Hospitalize directive: A prospective case series (NONU-HIP)Journal of Palliative Care; by Sverre A I Loggers, Romke Van Balen, Jeroen Steens, Hanna C Willems, Pamela Riezebos, Anja Wagenaar-Huisman, Michael H J Verhofstad, Esther M M Van Lieshout, Pieter Joosse; 9/25Some nursing home residents opt to forgo hospital admission in case of a suspected hip fracture due to the poor prognosis. This study assesses treatment satisfaction and quality of life in nursing home residents with a suspected hip fracture and a do-not-hospitalize directive. This study showed that nonoperative management of suspected proximal femoral fractures in nursing home patients that opted to forgo hospital admission, results in high treatment satisfaction, high quality of dying with good symptom control, and predictable short-term mortality rates. 

Incarceration and quality of cancer careJAMA Network Open; by Oluwadamilola T. Oladeru, Ilana B. Richman, Jenerius A. Aminawung, Jason Weinstein, Lisa B. Puglisi, Rajni Mehta, Hsiu-Ju Lin, Emily A. Wang, Cary P. Gross; 10/25The incarcerated population in the US is aging, and an estimated 15% of incarcerated adults, or approximately 175,000 individuals, are now 55 years or older. With this demographic shift, diseases of aging have become more prevalent, and cancer now ranks as the most common cause of death among people who are incarcerated in the US. Despite the growing prevalence, cancer outcomes among those incarcerated lag behind those with no history of incarceration. Individuals diagnosed with cancer while incarcerated or immediately following release have an approximate 2-fold increase in cancer-related mortality compared with the general population, even after adjusting for stage at diagnosis. Along with other published literature, this work suggests that gaps in quality of care may contribute to observed disparities in outcomes.Assistant Editor's note: Most of us cannot imagine what it would be like to be in prison. With cancer. And perhaps even dying there. Steven Garner knows. He spent many decades as an inmate at a state penitentiary. While there, he became a hospice volunteer supporting dying inmates, training other volunteers, and he served to pioneer Hospice in Corrections programs throughout the US. Steven is out of prison now, living his best life in Colorado and consulting around the nation about ways to improve end of life care for incarcerated persons. Oprah Winfrey was involved in sharing Steven's story in a Netflix documentary called Serving Life. NPR published an article about Steven in February 2024. Additionally, Hospice Analytics has posted a link to a 20-minute video about Steven's life and work in prison: Angola Prison Hospice: Opening the Door. And finally, if you'd like more information, Steven Garner has a website. 

Hospital - and private equity – affiliated specialty physicians negotiate higher prices than independent physiciansHealth Affairs; by Alexander P. Philips, Nandita Radhakrishnan, Christopher M. Whaley, Yashaswini Singh; 10/25Hospital and private equity (PE) consolidation in health care is altering the physician practice landscape, with more than three-quarters of physicians employed by these corporate entities as of 2023. We examined practice affiliation patterns for specialist physicians and those patterns’ association with commercial prices for cardiology and gastroenterology services... Hospital-affiliated specialists negotiated prices that were 16.3 percent higher for cardiology procedures and 20.7 percent higher for gastroenterology procedures compared with specialists in independent practices. PE-affiliated specialists negotiated prices that were 6.0 percent higher for cardiology and 10.0 percent higher for gastroenterology procedures.

Study examines biological causes of cancer deaths: Tumors invading large blood vessels may be to blame, UTSW researchers say UT Southwestern Medical Center, Dallas, TX; by Newsroom; 10/16/25 The ultimate cause of death from cancer may not be metastatic disease, as researchers have long surmised, but an infiltration of tumors into major blood vessels that cause blood clots and multiorgan failure, a one-of-a-kind clinical study led by UT Southwestern Medical Center suggests. These findings, published in Nature Medicine, could spur interventions that extend the lives of patients with advanced cancers. 

Where comfort and nutrition meet: A case series of children with severe neurologic impairment receiving home parenteral nutrition at the end of lifeNutrition in Clinical Practice; by Dana Steien, Erin Alexander, Molissa Hager, Andrea Armellino, Megan Thorvilson; 9/25Increasingly, home parenteral nutrition (HPN) ... is used for intractable feeding intolerance (IFI), which can occur near the end of life (EOL) in children with severe neurological impairment (SNI). [Four cases were retrospectively examined and we] found that the pediatric palliative care team (PPCT) was involved in all cases during HPN decision-making and planning. The pediatric nutrition support team (PNST) and PPCT collaborated to provide individualized, goal-directed care. All [patients] were enrolled in hospice while receiving HPN. HPN at EOL requires careful ethical consideration, particularly of autonomy because families often find comfort in providing nutrition.

The essential role of Speech-Language Pathologists in end-of-life swallowing intervention: A narrative reviewASHA Perspectives; by Sanora Yonan; 9/25Speech-language pathologists (SLPs) are essential in the intervention of dysphagia, particularly at the end of life (EoL), where their guidance can significantly improve patients' comfort and quality of life. However, despite a growing recognition of their importance in this palliative setting, SLPs continue to face obstacles for consistent involvement on the palliative care team. Three primary themes emerged [from this study]: diet texture adjustment, compensatory swallowing strategies, and patient and caregiver education. The review also identified significant barriers to SLP involvement, including inconsistent practices, limited resources, legal concerns, and a lack of interdisciplinary integration.Assistant Editor's note: In my experience, SLPs were rarely, if ever, utilized with hospice patients. However, this article clearly describes ways that SLPs could be helpful for patients with swallowing difficulties. SLPs can also be very useful for patients with speech difficulties. I think the IDT simply does not think of it-does not think of how a SLP could be helpful. Maybe it is also partly due to lack of knowledge of their value. Perhaps, both hospice and palliative care teams might consider arranging for an inservice from a SLP so that team members can learn more about how such therapy could be helpful in improving the quality of life of patients.

Pediatric home-based palliative care and hospice: Characterizing and comparing the populationsJournal of Pain and Symptom Management; by Ben Reader, Sibelle Aurelie Yemele Kitio, Steven M Smith; 9/25Home-based palliative care (HBPC) and hospice programs offer support for children with complex life-shortening conditions. However, there is little comparison of the characteristics and care trajectories of children and young adults enrolled in HBPC versus hospice, particularly across different age groups. Of 113 participants, hospice recipients were younger (median 2 vs. 7 years; ...), more likely to have an oncologic diagnosis, and had a higher mortality during the study period (69.6% vs. 22.1%; ...). HBPC participants had more hospital admissions, longer inpatient stays, and more outpatient visits. Subgroup analyses of children ≥1 year revealed diagnosis and code status differences, with hospice participants more likely to have 'allow natural death' orders and experience a code status change. 

Supporting bereaved caregivers: Adaptation of the REACH behavioral interventionOmega; by Jennifer Martindale-Adams, Jeffrey K Zuber, Deanna Stark, Linda O Nichols; 9/25The brief REACH VA intervention for bereaved caregivers, adapted from the REACH VA (Resources for Enhancing All Caregivers' Health) behavioral caregiver intervention, was piloted October 2023 to March 2025. REACH is structured and standardized to focus on information about grief and bereavement, support, and physical and emotional well-being through problem solving, cognitive reframing, and stress management, but targeted to each bereaved caregiver's specific needs through a Risk Assessment. An accompanying Notebook provides information on practical issues, understanding grief, grief activators, and moving from the caregiver role. On average, caregivers reported significant improvements in depressive symptoms, anxiety, stress, and symptoms of anger ... In February 2025, through the Department of Veterans Affairs Caregiver Support Program, each VA facility implemented the program. 

Economic benefits of investment in palliative care: An appraisal of current evidence and call to actionJournal of Pain and Symptom Management; by Liz Gwyther, Maya Jane Bates, Bach Tran, Liz Grant, Richard Harding, Eric L. Krakauer, Peter May, Eve Namisango, MR Rajagopa, Eleanor Reid, Charles Normand; 9/25This article summarises the literature suggesting that palliative care can provide cost savings to society as a whole (health systems, patients, families) as well as providing good care in line with patient preferences. The evidence indicates that palliative care is effective in providing patient-centred care, in managing symptoms and patient distress, and in saving money for both the family and the health system. Funding mechanisms for palliative care may exist in high-income countries, but many low-and middle-income countries do not yet have sustainable mechanisms of funding palliative care services.

[UK] Use of HidraWear in a malignant fungating wound at end of life: A case studyWounds UK; by Alison Schofield; 9/25Malignant wounds are a devastating complication associated with cancer, which are challenging to manage and can be distressing for patients, family members and healthcare professionals (HCPs). Management of malignant wounds can differ significantly from that of any other wound type, particularly as they often occur at end of life. Increased awareness and communication around this difficult wound type is needed, including case studies and sharing of HCPs’ experiences. This case study describes the treatment of an end-of-life patient in a hospice setting, with a challenging malignant fungating wound (MFW). This case highlights the importance of palliative symptom management and the benefits of using HidraWear in practice.

The National Dementia Workforce Study: The plan for organization sample frames and data collectionJournal of the American Geriatrics Society; by James Wagner, Laura M Wagner, Sheryl Zimmerman, Johanna van Tyen Silbersack Hickey, Kate Stewart, Sandi Nelson, Ji Qi, Raphael Nishimura, Piotr Dworak, Margaret Hudson, Jennifer Kelley, Heidi Guyer, Amy R Pettit, Donovan T Maust, Joanne Spetz; 9/25The National Dementia Workforce Study was designed to improve our understanding of the individuals and systems who care for people with dementia, but designing and implementing such a study is challenging due to the large number of patient care organizations, clinical and direct care roles, and locations in which care is provided. While there are national sampling frames available for federally certified nursing homes (i.e., via data from the Center for Medicare and Medicaid Services), there are no national sampling frames for assisted living communities or home care agencies. We describe the plan for sampling and recruitment procedures to be used in each stage and discuss limitations, including implications for coverage of the target population. Data collected through these surveys will be available to the research community.