Hospice Research Information 11/1/25

1. National Healthcare at Home 2025 Best Practices and Future Insights Study. BerryDunn, in partnership with National Alliance for Care at Home, LeadingAge, and Council of State Home Care and Hospice Associations, announces the return of best practice research to the industry with the 2025 National Healthcare at Home Best Practices and Future Insights Study. The purpose of this study is to continue the involvement and commitment to research in the healthcare at home industry. [For additional information, see the press release; to participate in the online survey, click here.]
2. Advancing the Science of Palliative Care Across the Lifespan (ASCENT). Our first request for letters of intent for the Research Scholar Award and the Pilot and Exploratory Studies Award closed last week, and we received an impressive number of submissions... If you didn’t submit a letter of intent, we may reach out to ask for your help with the scientific review process and would be grateful if you would consider joining an ASCENT study section. If you want to learn more about the award programs, we invite you to watch our overview webinar. An additional call for proposals will be announced next year—keep an eye on your inbox and the ASCENT website for details.
3. National Alliance for Care at Home - Pediatric e-Journal submission information. For more than a quarter of a century, National Hospice and Palliative Care Organization’s (NHPCO) Pediatric e-Journal (formerly known as the ChiPPS e-Journal/Newsletter), and now part of the Alliance for Care at Home, has been a critical and leading source of information and education relevant to pediatric palliative and hospice care (PPHC). The current and archived issues and other pediatric resources are available at https://allianceforcareathome.org/pediatric-e-journal/. Issue #81 is titled Adolescents and Young Adults. If you are interested in contributing an article in this genre, such as those on transitions, legal issues, and guardianship, the submission deadline is November 15, 2025. Please see this document for additional background and submission information.

Bridging care and support: Social services in hospice
Palliative 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!

Live discharges of patients in hospice home settings-Relief or grief: A narrative study
The American Journal of Hospice & Palliative Care; by Jacek T Soroka, Amanda L Paulson-Blom, Alla Blotsky, Jennifer L Derrick, Margaret T Mudroch; 10/25
Approximately 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: Hospice patients and loved ones can experience immense ambivalence when there is discussion of live discharge. 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 TLC, and without the support and guidance of their social worker and chaplain. Best practices dictate that hospices be proactive in discharge planning when long length-of-stay patients begin to stabilize. There should be frequent and ongoing discussions with the patient/loved ones about the potential for live discharge; it should never come as a surprise. Discharge planning needs to include: how the patient will get their DME/medical supplies/medications, who the loved one can call in the case of a medical crisis, who can provide tangible support and spiritual guidance (if desired), and can palliative care ease the transition once hospice has discharged?

Trends in state palliative care legislation across the US
JAMA Network; by Na Ouyang, Ling Han, Wendy Jiang, Stacie Sinclair, Eugene Rusyn, Shelli L. Feder; 10/24/25
More than 13.7 million people in the US could benefit from palliative care. Yet, access is uneven due to workforce shortages, low public awareness, variability in service availability, and federal delays. Although states play a pivotal role in shaping health policy, the extent of their legislative efforts regarding palliative care is unknown. Using data from the Palliative Care Law and Policy GPS, a database developed by the Yale Solomon Center for Health Law and Policy in partnership with the Center to Advance Palliative Care, we examined trends in the introduction and enactment of state-level palliative legislation, categorized legislative content, and mapped distribution across states and regions from 2009 to 2023... States introduced 819 pieces of legislation during the study period, peaking in 2018. States most frequently introduced quality/standards, public awareness, and payment policies. States that introduced the most legislation included Massachusetts with 111 pieces, New York with 72, and New Jersey with 61.

Affirming healthcare experiences among older Black-and White-identifying gay men living with serious illness: A qualitative study in the Deep South
American Journal of Hospice & Palliative Care; by Korijna Valenti, Michael Barnett, Stacy Smallwood, Ronit Elk; 10/25
Older 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.

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; 10/25
As 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.

Compassionate care, measurable impact: Evaluation of embedded physician-led palliative care in a community oncology practice
JCO Oncology Practice; by Haibei Liu, Jillian Hellmann, Jessica Heintz, Geoffrey Daniel Moorer, Karen Miller; 10/25
This 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. 

A rapid review exploring overnight camps for children with chronic or serious illness as a palliative care intervention for caregivers
Journal of Palliative Medicine; by Tracy Fasolino, Benjamin Parry, Alexandra Skrocki, Janice Withycombe, Barry A Garst, Ann Gillard, Ryan J Gagnon, Robert Hollandsworth; 9/25
Strong evidence supports the benefits of overnight camp for children with chronic and serious illness, yet little research exists on the role of these camps as a palliative, non-hospice intervention for caregivers. Several camps [included in this study] focused on education and disease management skills, whereas others offered an environment of relaxation and reconnection for the caregivers. Several positive themes emerged from the review, such as social well-being and psychological impact. Evidence suggests overnight camps may serve as a palliative intervention for caregivers of children with serious and chronic illnesses.

Clinician and parent perspectives on essential psychosocial care in pediatric cancer
JAMA 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; 10/25
The 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.

[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-talk
BMC Public Health; by Catrin Morgan-Duggan, Joanna Brooks, Lisa Graham-Wisener, Christine Rowland; 10/25
The 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. Findings were mapped using the Capabilities, Opportunities, Motivations, and Behaviour (COM-B) model of behaviour change, to identify potentially modifiable barriers and facilitators to engaging in death-talk.

[Scotland] Spiritual and cultural influences on end-of-life care decision-making: A comparative analysis of the Arab Middle East and the United Kingdom
Current Opinion in Supportive & Palliative Care; by Hanan Hamdan Alshehri, Chris McParland, Hibah Bahri, Bridget Johnston; 10/25
Spiritual and cultural factors shape end-of-life decision-making in the Arab Middle East and the United Kingdom. Arab cultures emphasize dignity through faith and family, leading to collective decisions, while the United Kingdom focuses on individual autonomy. Both allow withdrawal from futile treatment to alleviate suffering, but Arab approaches are more family centric. Additionally, spirituality in Arab cultures is often collective and religious, compared to the personal and secular practices common in the United Kingdom.

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