Hospice & Palliative Care Today

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Welcome to Hospice & Palliative Care Today, a daily email summarizing numerous topics essential for understanding the current landscape of serious illness and end-of-life care. Teleios Collaborative Network podcasts review Hospice & Palliative Care Today monthly content - explore these and all TCN Talks podcasts.

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August 1st, 2026

Saturday newsletters focus on headlines and research - enjoy!

Contents

Research News

   1. [Canada] Listening to young people on childhood death: a youth-focused participatory approach to children's palliative and end-of-life research and policymaking
   2. The embedded model for bridging essential delivery of care in assisted living facilities—EMBED-ALF
   3. How nurse leaders can cultivate a culture of inquiry to drive evidence-based practice, research, and clinical innovation
   4. One clinician, every conversation: Palliative care delivery by solo APRN hospitalists in Critical Access Hospitals
   5. Pruritus, fever, and sweats at the end of life: Nursing assessment and management considerations
   6. Apathy in dementia with Lewy bodies: Frequency, correlates, and impact on patient and caregiver experiences
   7. Functional outcomes and quality of life for patients with cachexia and solid tumour cancers: Findings of a systematic literature review
   8. High flow nasal cannula and high velocity nasal insufflation as a goal-concordant support tool for dyspnoea relief in palliative and end of life care
   9. Quality domains in home-based pediatric hospice and palliative care: Adolescent and young adult perspectives
   10. Friend caregivers among older adults

International News

11. [England] Big thoughts in little jars: Memory days for families where a child has died
12. [China] PRINCIPLISMQA: A Philosophy-grounded approach to assessing LLM-human clinical medical ethics alignment

Today's Encouragement

13. I love deadlines...

Research News

[Canada] Listening to young people on childhood death: a youth-focused participatory approach to children's palliative and end-of-life research and policymaking
Children & Society; by Sydney Campbell, Nika Rovensky, Ryan Kent, Lauren Delaney, Franco A. Carnevale, Mary Ellen Macdonald; 6/23/26
Conclusion: Our study is one of the first to investigate the perspectives of young people in Canada regarding children's palliative and end-of-life (P-EOL) care, and the first in Canada to employ a participatory approach with young people in research about childhood death and dying. ... To date, the lessons we have learned can help researchers from diverse contexts aiming to carry out similar projects related to children's P-EOL care, based in the belief that the only way to truly shift current practices that overlook young people's voices and engagements as meaningful is through continuous advocacy, development, and application of engagement practices in all matters affecting young people.

The embedded model for bridging essential delivery of care in assisted living facilities—EMBED-ALF

Journal of the American Medical Directors Association; by Heitor Tavares Santos, Marie Dobrayel, Edith Burns, Alexander Rimar, Philip N. Solomon; 8/26

Older adults residing in assisted living facilities (ALFs) often face fragmented medical care, especially when managing complex chronic conditions, cognitive impairment, or end-of-life needs. This article describes an interprofessional provider-led, integrated care model embedded within an ALF in a major metropolitan area that includes memory care and home hospice. The model integrates geriatrics and palliative medicine–trained providers into routine care, supported by structured communication, tele-emergency services, and collaboration with hospice and hospital teams. While formal outcomes are not yet available, this model offers a potentially replicable framework for integrating care delivery into ALFs and describes a possible payment and policy model that supports integrated medical care in noninstitutional long-term care settings.

How nurse leaders can cultivate a culture of inquiry to drive evidence-based practice, research, and clinical innovation

Excellence & Credentialing in Health Care; by Stucky, Christopher H.; Catanese, Julia G.; 7/26

... nurses maintain a unique perspective on patient satisfaction, safety, and care delivery because they spend more time at the bedside than any other clinical group. Accordingly, nurses are exceptionally positioned to drive system-wide improvement by leveraging their clinical proximity, professional expertise, commitment to EBP [evidence-based practice], and enduring public trust to redesign health care systems for the benefit of patients and communities. The slow diffusion of EBP into bedside standards of care prevents patients from receiving optimal treatment [as] ... it takes approximately 15.6 years for the findings of a landmark study to achieve 50% adoption in practice. This delay is compounded by rising patient acuity and systemic complexity. Operational excellence requires a sustained commitment to tangible strategies, including developing multidisciplinary councils, formalizing protected mentorship programs, and creating collaborative avenues for scholarly dissemination.

One clinician, every conversation: Palliative care delivery by solo APRN hospitalists in Critical Access Hospitals
Journal of Hospice & Palliative Nursing; by Melissa Skoff; 7/26
Advanced practice registered nurses (APRN) who practice as solo hospitalists in critical access hospitals are often underrecognized in their role in providing palliative and end-of-life care. This article describes the full scope of the solo APRN hospitalist in a critical access hospital setting with close attention to how complex patient demands contribute to the challenges in providing high-quality end-of-life communications. This article examines clinical, educational, and ethical dimensions of this work, and presents a case example that illustrates how these pressures present during a shift. Strategies to strengthen rural palliative care capacity are discussed, including tele-palliative care, remote ethics support, and APRN-centered education. As rural workforce shortages persist and continue to rise, alongside rising patient acuity, naming and addressing these structural gaps is essential in improving quality of care and protecting the well-being of a solo APRN hospitalist.

Pruritus, fever, and sweats at the end of life: Nursing assessment and management considerations

Journal of Hospice & Palliative Nursing; by Angel Smothers, Amanda Kitzmiller, Diana Niland; 8/26

Pruritus, fever, and sweats are frequently observed thermoregulatory symptoms among patients with advanced chronic illnesses, especially during the terminal phase. These symptoms can substantially affect patient comfort and may contribute to fatigue, delirium, sleep disturbances, and lead to increased caregiver burden. Nurses play a crucial role in distinguishing between reversible and irreversible causes of pruritus, fever, and sweats. They are essential in implementing evidence-based interventions focused on patient comfort that align with the goals of care for both patients and families. This article presents a thorough, evidence-based review of the assessment and management of pruritus, fever, and sweats at the end of life.

Apathy in dementia with Lewy bodies: Frequency, correlates, and impact on patient and caregiver experiences
Parkinsonism & Related Disorders; by Anastasia L. Barnes, Alfonso Enrique Martinez-Nunez, Tingchang Wang, Zhigang Li, Gregory M. Pontone, Melissa J. Armstrong; 8/26

Apathy, defined as a lack of motivation, is a common behavioral symptom in parkinsonian syndromes including Parkinson's disease (PD, 39%), multiple system atrophy (MSA, 48%) and progressive supranuclear palsy (PSP, 79%). Apathy is associated with poorer quality of life for patients with parkinsonism and higher burden for their caregivers. This is particularly important as apathy in DLB has implications for function, disease progression and nursing home placement. Apathy is thought to relate to disruption of frontal-subcortical networks. In PD, apathy is associated with increased risk of cognitive impairment, depression, motor symptoms and disability. In spite of the high prevalence of apathy across neurodegenerative disorders, it has no approved treatments.

Functional outcomes and quality of life for patients with cachexia and solid tumour cancers: Findings of a systematic literature review

Journal of Cachexia, Sarcopenia & Muscle; by Jeffrey Crawford, Marie Fallon, Jarjieh Fang, John D Groarke, Karen Smoyer, Tateaki Naito, Ira A Jacobs; 8/26

Cachexia, a complex multifactorial syndrome characterized by loss of skeletal muscle mass, is common in cancer and impacts treatment response, quality of life (QoL) and survival. No effective therapy is currently available. This report summarizes findings from the literature on the relationship between cachexia and physical function, activities of daily living and health-related QoL in patients with solid tumours. Many studies identified statistically significantly worse physical function, activities of daily living or health-related QoL in patients with cachexia or body weight loss compared with patients without these conditions. [Additionally], ... the wide range of methods, physical function metrics and patient-reported outcomes instruments used across studies support a call for standardization.

High flow nasal cannula and high velocity nasal insufflation as a goal-concordant support tool for dyspnoea relief in palliative and end of life care
The European Society of Medicine; by Megan Wooldridge; 6/26

Dyspnoea is a prevalent and distressing symptom experienced by patients with both advanced respiratory and non respiratory diseases approaching the end of life. Despite widespread use of pharmacological and non pharmacological interventions, symptom control is often incomplete. Some therapies may compromise comfort, communication, or alignment with patient goals of care. High flow nasal cannula (HFNC) therapy, including high velocity nasal insufflation (HVNI), has emerged as a potential option for relieving breathlessness while preserving patient interaction and dignity. Current evidence supports HFNC and HVNI as valuable interventions for dyspnoea management in palliative care, across multiple disease types and age ranges internationally.

Assistant Editor's note: if you'd like to learn more about HVNI, you can find some information here: https://www.sciencedirect.com/science/article/abs/pii/S0196064417319686

Quality domains in home-based pediatric hospice and palliative care: Adolescent and young adult perspectives
BMC Palliative Care; by Daniel H Grossoehme, Claire A Crawford, Jhansi Chandra Ellakula, Toluwalase Ajayi, Justin N Baker, Sarah Friebert, Lisa Humphrey, JillAnn Jarrell, Rachel Thienprayoon, Pamela S Hinds; 7/26
Previous research with pediatric providers and caregivers concluded that pediatric hospice and palliative care have unique attributes. Not known is how adolescent hospice and palliative care patients understand quality palliative care. Methods: Semi-structured interviews with 10-26 year-olds who received home-based hospice and/or palliative care visits in the prior three years at six diverse sites in the United States. The results address an important gap by including adolescent/young adult patients' voices regarding delivery of home-based hospice and palliative care. Clinical implications include prioritizing and making time to build trusting relationships directly with the AYA, empowering them to participate in their care to the extent appropriate and prepare for transition to adult care when needed, providing support for family members, and training for all providers in generalist spiritual care.

Friend caregivers among older adults
JAMA Network Open; by Yee To Ng, Vicki A. Freedman, Kira S. Birditt, Amanda N. Leggett; 7/26

In the US, the number of family and unpaid individuals providing care to older adults has increased over the past decades, from 18 million to 24 million, reflecting substantial growth of the population aged 65 years and older. At the same time, major demographic and family changes, such as rising divorce rates, the increased formation of stepfamilies, fewer total births and delayed childbearing, have challenged traditional family-based caregiving models and may be a driving force for the growing need for friend caregivers. In this cross-sectional study of Medicare beneficiaries aged 65 years and older, friend caregivers represented a specialized segment of the unpaid caregiving workforce, particularly for older adults lacking family resources. Understanding how friends provide care can help health care professionals better recognize them as an integral part of the caregiving network.

International News

[England] Big thoughts in little jars: Memory days for families where a child has died

Clinical Child Psychology & Psychiatry; by James McParland, Bernadette O'Gorman, Jacqueline Victor, Sara Portnoy; 7/26

The Life Force community paediatric palliative care team offers support to children and young people with complex health needs and their families. This article discusses the development of Memory Days, a yearly event where a child or young person cared for by the team is remembered by their family. The article describes how these Memory Days are set up and facilitated and describes three of the specific memory activities the team has offered. These creative activities are completed in a group setting which affords families who can feel isolated through grief, the opportunity to connect with others and find solidarity.

[China] PRINCIPLISMQA: A Philosophy-grounded approach to assessing LLM-human clinical medical ethics alignment

Findings of the Association for Computational Linguistics; by Chang HONG, Minghao WU, Qingying XIAO, Yuchi WANG, Xiang WAN, Guangjun YU, Benyou WANG, Yan HU; 7/26

LLMs are increasingly embedded in clinical workflows as documentation assistants, patient communication drafts, and decision-support tools, roles where they already encounter ethically complex scenarios. We introduced PRINCIPLISMQA, a philosophy grounded approach addressing the critical gap between medical LLMs’ knowledge accuracy and ethical reasoning capability in clinical contexts. Our case studies on recent LLMs demonstrate that high performance on knowledge benchmarks does not translate to ethical considerations in clinical decision making, revealing substantial gaps in navigating ethical trade-offs across multiple valid solutions. PRINCIPLISMQA provides the research community and industry with a validated methodology for assessing clinical AI deployment readiness, bridging the gap between technological capability and ethics trustworthiness.

Assistant Editor's note: LLM means Large language model. According to Stanford University, "Large language models (LLMs) are a type of artificial intelligence designed to understand and generate human-like text based on the input they receive." For example, ChatGPT is powered by a LLM. You can learn more about LLMs in the Stanford University site referenced above.

Today's Encouragement

I love deadlines. I love the whooshing noise they make as they go by. ~Douglas Adams

The Fine Print:
Paywalls: Some links may take readers to articles that either require registration or are behind a paywall. Disclaimer: Hospice & Palliative Care Today provides brief summaries of news stories of interest to hospice, palliative, and end-of-life care professionals (typically taken directly from the source article). Hospice & Palliative Care Today is not responsible or liable for the validity or reliability of information in these articles and directs the reader to authors of the source articles for questions or comments. Additionally, Dr. Cordt Kassner, Publisher, and Dr. Joy Berger, Editor in Chief, welcome your feedback regarding content of Hospice & Palliative Care Today. Unsubscribe: Hospice & Palliative Care Today is a free subscription email. If you believe you have received this email in error, or if you no longer wish to receive Hospice & Palliative Care Today, please unsubscribe here or reply to this email with the message “Unsubscribe”. Thank you.