Literature Review

Addressing palliative care gaps for rare congenital disease in adults: CM-AVM2 as an exampleJournal of Pain & Symptom Management; by Matthew W Kenaston, Ryan Baldeo, Tyler K Murphy; 10/25Capillary malformation-arteriovenous malformation type 2 (CM-AVM2) is a rare vascular disorder marked by complex, progressive symptoms and limited treatment options. As more individuals with rare diseases reach adulthood, palliative care plays an essential role in supporting quality of life when disease-directed therapies begin to fail. We present a young adult male with EPHB4-positive CM-AVM2, transferred to our tertiary care center for progressive malnutrition, refractory diarrhea, and worsening abdominal pain despite extensive subspecialty care. Through medication optimization, dynamic communication, and consistent interdisciplinary collaboration, the [palliative care] team helped stabilize aspects of his comfort and gradually facilitated GOC [goals of care] discussions. We further discuss how palliative care in this setting differs from standard frameworks, requiring proactive use of disease-specific resources and protracted, anticipatory care planning to optimize quality of life.

Leveraging electronic health record tools and social work to improve advance care planning documentation in older adults with cancerJCO Oncology Practice; by Lauren Reed-Guy, Julianne Ani, Keshav Raghavendran, Charlotte Zuber, Molly Collins, Meghan Kennedy, Noah Goldman, Carolyn Cahill, David Dougherty, Peter Gabriel, Aditi Singh, Leland Boisseau, Ramy Sedhom; 10/25 We conducted a quality improvement pilot in a community oncology practice targeting patients age 65 years and older with a documented geriatric assessment. An electronic health record (EHR) dashboard was used to flag patients without ACP [advance care planning] documents on file. We implemented a default offer of an ACP-focused social work visit during already-scheduled oncology visits. Over 9 months, the proportion of patients with any ACP documents on file increased from 32% to 65%. AD completion increased from 21% to 53%, POLST completion increased from 15% to 31%, and patients with an ACP note on file increased from 17% to 23%. Assistant Editor's note: This study highlights the incredible value of social work interventions in a variety of care settings.

[Australia] Defining the symptoms of personality and behaviour changes in brain tumour patients and their impact on caregiversSupportive Care in Cancer; by Emma McDougall, Haryana M Dhillon, Karin Piil, Lauren J Breen, Anna K Nowak, Sara Nordentoft, Sine Kjærgaard, Georgia K B Halkett; 10/25This study highlights the nuances and complexity in conceptualising personality changes in patients with a brain tumour and the grief, isolation, and safety concerns experienced by carers. Brain tumour-related aggression was identified as a significant concern by both healthcare professionals and carers, lacking clinical guidelines internationally for managing violence and aggression in this population. Future research is required to test interventions and support for safeguarding and risk management for patients and their family members.

Transfusion access central to hospice decision-making among patients with blood cancers The ASCO Post; by Julia Cipriano, MS, CMPP; 11/13/25Based on the results of a multicenter cross-sectional survey study published in JAMA Network Open by Raman et al, patients with blood cancer who were potentially hospice-eligible placed the greatest importance on transfusion access compared with routine hospice services. “The high value placed on transfusion access suggests that this factor is central to hospice decision-making and highlights the need for novel hospice delivery models that incorporate palliative transfusion access for patients with advanced blood cancers,” the investigators commented. Editor's Note: Revisit our previous post, "Access to hospice and certain services under the hospice benefit for beneficiaries with end-stage renal disease or cancer."

Difference-making factors linked to higher reach of Specialist Palliative Care among people with heart failure across a national sample of VA Medical Centers American Journal of Hospice and Palliative Medicine; by Yan Zhan, PhD, RN, MBA, Edward J. Miech, EdD, Erica A. Abel, PhD, MD, and Shelli L. Feder, PhD, APRN, FPCN, FAHA; 11/10/25 Conclusion:  High Specialist Palliative Care (SPC) reach among people with advanced heart failure (aHF) was linked to combinations of several modifiable factors related to staffing, cardiology involvement, and outpatient palliative care. These findings provide actionable insights into improving SPC delivery across VAMCs.Editor's Note: What education or other partnerships do you have with VA Medical Centers in your service areas? Or, what gaps for veterans exist because of a lack of VA Medical Centers? Use these "combinations of modifiable factors related to staffing, cardiology involvement, and outpatient palliative care" for your strategic planning to improve care for veterans struggling with advanced heart failure.

State-level variability in location of death of patients with end-stage liver diseaseDigestive Diseases & Sciences; by Julia Meguro, Michael Huber, David Goldberg; 10/25 Although deaths from end-stage liver disease (ESLD) and hepatocellular carcinoma (HCC) in the United States increasingly occur at home or in hospice, inpatient medical facility deaths remain high. Despite the decrease in in-hospital deaths for all causes, non-White decedents are more likely than White decedents to die in a hospital setting. This study aimed to determine state-level variability in the location of death among patients with ESLD and HCC and to assess racial/ethnic differences in these patterns, focusing on Black, White, and Hispanic/Latino patients. Findings from this study identify states where policies and programs that reduce inpatient deaths for ESLD patients may be most needed. Targeted interventions to improve access to high-quality EOL care for all patients address the national variability of hospice use, especially for those who are Black or African American and in states with high numbers of inpatient deaths and low rates of hospice use, should also be identified and implemented.

Clinician and parent perspectives on essential psychosocial care in pediatric cancerJAMA Pediatrics; by Kimberly S. Canter, Anne E. Kazak, Natalie Koskela-Staples, Michele A. Scialla, Kimberly Buff, Emily Pariseau, Victoria A. Sardi-Brown, Julia B. Tager, Lori Wiener; 10/25The Standards for Psychosocial Care for Children With Cancer and Their Families provide guidelines for evidence-based psychosocial care for children with cancer and their families. The Implementing the Standards Together: Engaging Parents and Providers in Psychosocial Care (iSTEPPP) study extends the standards through innovative collaborative research between clinicians and patient and family advocates, with the goal of widespread clinical implementation of standards that clinicians and parents or caregivers agree to be priorities. The 3 standards prioritized by parents and clinicians in this study offer insight into shared priorities for psychosocial care in pediatric cancer. However, misalignment on other priority standards (parental mental health, palliative care, and neurocognitive monitoring) highlights the differences in perception between parents and clinicians. Areas lacking agreement are a stark reminder of potential challenges when working to meet the holistic needs of children with chronic diseases and their families, as clinicians and parents may not agree on which needs are most important.

Enhancing end-of-life quality metrics: The role of palliative care in a community oncology practice.JCO Oncology Practice; by Katherine Baker, Aaron J. Lyss, Larry Edward Bilbrey, L. Johnetta Blakely, Casey Chollet-Lipscomb, Natalie R. Dickson, Leah Owens, Sandhya Mudumbi; 10/25As value-based payment (VBP) models expand in oncology, care teams adopt innovative strategies to improve outcomes, enhance patient experience, and meet evolving quality metrics (QMs). End-of-life care is one area where timely access to hospice remains inconsistent—especially in rural and underserved communities—and often outside oncology practices' direct control. Additionally, advances like immunotherapy, which may be well tolerated near end-of-life, challenge the hospice model as the sole supportive care option. NCCN and ASCO guidelines recommend early palliative care in advanced cancers, and many community oncology practices now integrate palliative care-to provide longitudinal, goal-concordant care that supports quality of life throughout treatment. Including palliative care receipt in end-of-life QMs offers a more nuanced, equitable way to evaluate care, ensuring patients receive needed support regardless of geography or treatment stage.

Pumping irony: When the hospice is inhospitable Experience Life; by Craig Cox; 10/22/25 ... University of Michigan researchers, reviewing the health records of some 139,000 hospice patients diagnosed with dementia, found that nearly half of them were given benzodiazepines, a class of drugs designed to relieve agitation and anxiety. ... The results, in many cases, were deadly. ... “For patients who are not actively dying, patients and families may prioritize preserving cognition, communication, and function — goals that may be compromised by sedating medications,” she writes. “This further underscores the need for dementia-specific hospice interventions to help offer scalable, nonpharmacologic approaches, to equip hospice clinicians with effective alternatives.”

Correctional health and oncologist perspectives on strategies to improve cancer care in US prisons-A qualitative studyJAMA Network Open; by Christopher R. Manz, Brett Nava-Coulter, Emma Voligny, Daniel A. Gundersen, Alexi A. Wright; 10/25Individuals diagnosed with cancer while incarcerated in US prisons have worse mortality than nonincarcerated individuals. In this qualitative study of clinicians delivering cancer care for incarcerated individuals, participants identified pragmatic strategies to improve cancer screening and treatment that address most identified barriers to care in US prisons. Application of these strategies may be associated with mitigation of disparities in cancer survival for incarcerated individuals. Participants identified strategies to improve care addressing nearly all previously identified barrier themes, including strategies for (1) conducting screening in prisons; (2) bringing cancer treatment into prisons and centralizing care; (3) using telehealth, navigators, and early oncologist involvement to improve care coordination; (4) improving communication and social support; (5) improving symptom management, access to palliative medicine, and end-of-life care; and (6) delivering patient-centered care. Strategies require implementation by prisons, prison clinicians, oncologists, oncology practices, and policymakers.

[Brazil] Impact of medical cannabis on the quality of life of cancer patients: A critical reviewJournal of Integrative and Complementary Medicine; by Larissa Gonçalves Correa, Adriana Marcassa Tucci; 9/25This study aimed to review the literature on the impact of medical cannabis (MC) on the quality of life (QoL) of cancer patients. The studies suggest that MC can improve mental health, sleep, appetite, and pain in cancer patients and decrease nausea, vomiting, and the use of other medications, such as opioids. Increased survival time and cognitive function improvements were also observed, with mild or moderate adverse effects. Both tetrahydrocannabinol and cannabidiol (full spectrum) were commonly used, with varied intervention durations.

Patients with advanced cancer often receive treatments that conflict with their goals Healio; by Josh Friedman; 10/20/25 Many patients with advanced cancer who prefer treatment that prioritizes quality of life receive therapies focused on preserving it. A retrospective analysis showed nearly 40% of individuals with advanced cancer who preferred treatment that improved their comfort felt clinicians gave them therapies meant to increase longevity.

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.