Literature Review

“Nobody told us”: Inequities in end-of-life dementia careJournal of Pain & Symptom Management; by Krista L. Harrison, Lingsheng Li, Jasmine Santoyo-Olsson, Niousha Moini, Lauren J. Hunt, Rebecca L. Sudore, Alex Smith; 6/26In the United States, one in three older adults dies with or from dementia. Despite increasing hospice enrollment, minoritized racial, ethnic, and LGBTQ communities face persistent inequities in access to timely, high-quality end-of-life care. We recruited bereaved caregivers of decedents with dementia from communities that experience health disparities. Just over half of the participants rated end-of-life care middling-to-bad. Reasons cited for receiving poorer care than others were age (40%), race, ethnicity, or nationality (36%), disability (20%), and weight (8%). End-of-life communication challenges reported by participants were often based in systemic racism and structural oppression, including: problems accessing language-concordant education and clinicians, missed opportunities for anticipatory guidance due to cultural biases or lack of access to healthcare, difficulty finding clinicians skilled in sensitive and tailored communication, inconsistent hospice admission criteria, and understaffed hospices.

Hospice care provider and compassion fatigue research projectPersonal communication; by Michelle Jackson; 6/10/26Researchers at Missouri State University are conducting a research survey regarding compassion fatigue, resilience, and participation in meaningful activities for hospice care providers. Participation deadline 7/12/26. For additional information and to participate, click here.

Goals of care discussions in medical training: Integrating palliative care for holistic, patient-centered careHealthcare; by Celine Rochon, Farzana Hoque; 5/26Goals of care discussions are essential communication skills in medical training that bridge patient values with clinical decision-making. Integrating palliative care principles into these conversations enables holistic, patient-centered care, yet medical trainees often lack structured preparation for these critical interactions. Integrating palliative care principles into medical training for goals of care discussions is essential for developing patient-centered clinicians. Combining structured communication frameworks, interprofessional education, targeted skills training, and technological support creates a comprehensive educational approach that prepares trainees to elicit patient goals, create individualized care plans, and deliver holistic care that honors patient values.

Serious illness care exclusion, disclosure, & trust for older gay men & caregivers in the Deep SouthJournal of Pain & Symptom Management; by Korijna Valenti, Margaret Armstrong, Michael Barnett, Stacy Smallwood, Ronit Elk; 5/26Older gay men in the Deep South experience serious illness within healthcare systems shaped by heteronormativity and structural racism. Although disparities in access and disclosure are documented, less is known about how negative or ambiguous healthcare encounters are interpreted in serious illness settings. Using a community-based participatory research approach, we conducted semi-structured interviews with 16 participants (11 patients aged 50 years or older living with serious illness and 5 caregivers) residing in the Deep South. Five themes emerged: discriminatory experiences and bias, clinician communication gaps, exclusion from decision-making, system-level gaps in care quality, and disclosure, trust, and safety. Participants described overt and subtle forms of bias, dismissal of partners in clinical encounters, rushed or unclear communication, and institutional barriers that intensified vulnerability during serious illness. Black participants more frequently identified racialized experiences and contextualized mistrust within histories of systemic racism.

P4s are either unhelpful or unnecessary. Proposing a better AI-powered solution to predict patients' preferencesBioethics; by Beatrice Marchegiani; 5/26The Personalized Patient Preference Predictor (P4) has been proposed as an AI tool to aid surrogate decision-making when incapacitated patients lack advance directives. This paper argues that P4s face a fundamental dilemma: they are either unnecessary or unhelpful. To address  ... [its] limitations, I propose a better AI-powered alternative: the Patient Preference Retriever (PPR). Rather than generating new text, the PPR uses vector search techniques to retrieve relevant statements from a patient's digital footprint, presenting them verbatim alongside metadata such as date, context, and source. This approach offers greater transparency, respects autonomy more reliably, and supports surrogate decision-makers in weighing authentic evidence. I conclude that while advance directives remain the gold standard, retrieval-based approaches like the PPR provide a more reliable and ethically defensible use of AI in surrogate decision-making than generative approaches like P4s.

Stakeholder perspectives on integrating ADEPT into end-of-life care for nursing home residents with dementia: A qualitative descriptive studyInternational Journal of Older People Nursing; by Susanny J Beltran, Latarsha Chisholm, Emily Jaijairam; 5/26Nursing homes care for a significant proportion of individuals with advanced dementia, yet timely hospice referrals remain a challenge. The Advanced Dementia Prognostic Tool (ADEPT) is a mortality risk score instrument that holds promise for improving care planning by providing a standardised, accessible method for identifying residents at risk of death within 6 months. Current processes for identifying hospice-eligible residents rely on regular assessments and interdisciplinary collaboration but reveal significant gaps, including delays in referrals and inconsistent practices. Participants viewed ADEPT as a promising tool to complement goals-of-care conversations and enhance care planning, rather than exclusively triggering hospice initiation. Implementation barriers included the need for electronic system integration, regulatory compliance and staff education, while facilitators encompassed strong leadership support, interdisciplinary coordination and alignment with existing workflows.

The clinical relevance of sleep disturbance ("insomnia") in patients with advanced cancer receiving palliative care: A scoping reviewSupportive Care in Cancer; by Shauna Munir, Eva Jones, Faith Precious Omeokwe, Andrew Neil Davies; 5/26Sleep disturbance ("insomnia") is common in patients with advanced cancer receiving specialist palliative care. The studies highlight that sleep disturbance is associated with a range of physical symptoms (e.g. fatigue, drowsiness), a variety of psychological problems (e.g. anxiety, depression), impaired quality of life, and reduced overall survival. Sleep disturbance is an "orphan" symptom, and the results of this scoping review suggest that it deserves much greater attention. Indeed, healthcare professionals should screen all palliative care patients for the problem and, when identified, perform a thorough assessment and initiate an appropriate treatment.