Literature Review

Executive Personnel Changes - 10/24/25

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 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. Steven is featured in The Historic New Orleans Collection's recently released book Captive State: Louisiana and the making of mass incarceration and he shared God Behind Bars' YouTube video Life changing day inside Angola Prison. If you'd like more information, Steven Garner has a website.

After her son’s painful death, a Cheshire mother highlights Connecticut’s pediatric hospice gap New Haven Register, Norwalk, CT; by Cris Villalonga-Vivoni; 10/26/25 Carolyn Torello believes that no parent should outlive their children, yet that became her reality. ...  As his condition worsened, the family faced his impending death without the support of pediatric palliative or hospice care. No provider, she said, seemed to know how to help or where to begin. He died at 15 years old in 2021. ... In 2020, an estimated 7,800 children in Connecticut were living with complex medical conditions that limited their life expectancy and could have benefited from palliative or hospice care, according to data from the National Survey of Children's Health. ... Torello thinks that if Michael had access to hospice care, he could have died with greater dignity, and their family could have focused on simply being together. ... Efforts to create a more formalized pediatric palliative care system have been underway since 2024, led by a state-commissioned working group that will make recommendations to the legislature on potential reforms.Editor's Note: Editor's Note: This article puts forth significant information (with links) for all states, for all hospices. Having served on the firmly rooted Pediatrics Team of Hospice & Palliative Care of Louisville (begun in 1980) for four years (1997-2001), I take for granted how some type of pediatric hospice care needs to be available in every region. For related articles we have recently posted:

Sunday newsletters focus on headlines and top read stories of the last week (in order) - enjoy!

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.

Compassionate care, measurable impact: Evaluation of embedded physician-led palliative care in a community oncology practiceJCO Oncology Practice; by Haibei Liu, Jillian Hellmann, Jessica Heintz, Geoffrey Daniel Moorer, Karen Miller; 10/25This analysis indicates that embedding palliative care physicians within a community oncology practice significantly increases hospice enrollment and LOS [length of stay] greater than 3 days. These findings support a cooperative care model as a practical strategy for integrating palliative care physicians into community-based oncology practices to improve patients’ EOL outcomes. 

Affirming healthcare experiences among older Black-and White-identifying gay men living with serious illness: A qualitative study in the Deep SouthAmerican Journal of Hospice & Palliative Care; by Korijna Valenti, Michael Barnett, Stacy Smallwood, Ronit Elk; 10/25Older gay men living with serious illness often face challenges related to identity, disclosure, and relational recognition in healthcare settings [and] these challenges are particularly acute in the Deep South, where affirming care remains inconsistent, and disparities persist. Three main themes were identified [in this study]: (1) Experiences of Inclusion and Visibility, (2) Positive Communication, and (3) Sharing Sexuality and Effect on Care. Clear communication, honesty, and opportunities to ask questions were critical in navigating medical decisions. Discussions of sexual orientation were context-dependent and often shaped by perceptions of safety. Recognition of chosen family members, particularly partners, was central to participants' sense of dignity and affirmation in care.

Live discharges of patients in hospice home settings-Relief or grief: A narrative studyThe American Journal of Hospice & Palliative Care; by Jacek T Soroka, Amanda L Paulson-Blom, Alla Blotsky, Jennifer L Derrick, Margaret T Mudroch; 10/25Approximately 20% of hospice patients in the US are discharged alive, often due to Medicare regulations. One of the caregivers described discharge as distressing and poorly coordinated; the other reported a positive experience shaped by prior knowledge and financial resources. Both emphasized the importance of clear communication, care planning (eg, to avoid loss of durable medical equipment), and interdisciplinary support. Live hospice discharge can cause emotional and practical disruption, especially when not accompanied by a care transition plan or access to durable medical equipment. This study highlights the need for team-based communication, sensitivity in language, and continued support. Assistant Editor's note: There can be immense ambivalence among patients and loved ones when one is discharged alive from hospice. Usually, these patients have been with hospice for many months or even years. Perhaps the discharge is viewed as good news-even GREAT news(!) that the patient has "graduated" from hospice. Maybe loved ones will throw a graduation party(!) as it means that the patient is no longer terminally ill (as defined by hospice regulations). On the other hand, some patients/loved ones can become very distraught, wondering how they will get along without having a nurse to call in the middle of the night, without their beloved aide who brightens their day with the TLC of the bath-hair-nail care, and without the support and guidance of their social worker and/or chaplain. Some patients/loved ones will feel angry and abandoned. Best practices dictate that hospices be proactive in discharge planning when the health of their long length-of-stay patients hits a plateau; discharge should never come as a surprise. There should be frequent and ongoing discussions with the patient/loved ones about the potential for live discharge. Discharge planning needs to include: how the patient will get their DME/medical supplies/medications?, who does the loved one call in the middle of the night if there is a medical crisis?, who can provide tangible support and spiritual guidance (if desired)?, and can palliative care ease the transition once hospice has discharged?

Bridging care and support: Social services in hospicePalliative Care and Social Practice; by M. Courtney Hughes, Erin Vernon, Magdalena McKeon, Michelle L. Foster; 10/25 We recently surveyed informal caregivers of hospice patients nationwide who were currently caring for a hospice patient or had cared for one within the prior 2 years about the types of social services they found valuable... [Most frequently mentioned social service categories included: counseling and support groups, personal care assistance, and meals.] The above survey findings and our experience in conducting studies with informal caregivers of hospice patients over the last decade highlight the vital role a variety of social services play as hospice patients and their families navigate the emotional, practical, and logistical challenges that accompany end-of-life care. Services such as counseling, care coordination, resource navigation, and support groups help families cope with the stress, grief, and uncertainty that often arise during this time. Social workers and related professionals provide a bridge between the clinical team and the family, ensuring that the patient’s needs are met while also addressing the well-being of informal caregivers. This holistic approach helps families feel supported as they make decisions that honor their loved one’s wishes.Publisher's note: This article is a result of a survey promoted earlier this year in Hospice & Palliative Care Today, and other sources. Thank you to all who participated!

[UK] Adopting the lens of the COM-B behaviour change model to qualitatively explore and understand public health implications of young adults' attitudes towards death-talkBMC Public Health; by Catrin Morgan-Duggan, Joanna Brooks, Lisa Graham-Wisener, Christine Rowland; 10/25The topic of death and dying holds universal significance, yet societal norms often discourage open discussions, leading to a culture of death-denial. The analysis revealed four key themes which collectively illustrate the complex interplay between individual attitudes and broader cultural influences in shaping how young adults perceive and discuss death and dying. The themes highlighted how internal and external factors affect the ability and willingness of young adults to engage in meaningful discussions about death. Factors such as social stigma, fear of causing distress, and a lack of communication skills were identified as significant barriers. Conversely, the recognition of the importance of death-talk, personal experiences with bereavement, and a supportive social environment were found to facilitate these discussions.

Palliative care legislation exploding at state level, but policy gaps remain, study reveals McKnights Home Care: by Adam Healy; 10/27/25 States are becoming increasingly focused on palliative care. Since 2009, the number of palliative care-related bills introduced at the state level has grown at a rapid pace, according to a new study published in JAMA Network Open. ... Of the 819 bills introduced between 2009 and 2023, roughly 30% were eventually passed into law. ... Bills related to palliative care quality and public awareness bills were the most likely to pass, it found. Meanwhile, relatively few bills governing palliative care workforce, clinical skill building and patient rights passed during the study period.

Kalos Health shutters amid Medicaid changes Hospice News; by Holly Vossel; 10/29/25 Kalos Health Inc. is closing amid changes to Medicaid reimbursement. The change could challenge access to home-based services for chronically ill adults in western New York. The nonprofit provided health insurance coverage across six counties in New York through a Medicaid managed long-term care (MLTC) plan. Since 2014, the plan has coordinated with regional health care providers to serve adults with chronic illness and health disabilities. Kalos Health is part of The Hospice and Palliative Care Group (HPCG), an organization that provides administrative services. Other providers in the group include Niagara Hospice, Liberty Home Care, Hospice of Orleans and The Niagara Hospice Alliance.