Literature Review

Nurse perceptions of end-of-life care quality across long-term care, home, and social model hospice home settings: A qualitative descriptive studyAmerican Journal of Hospice & Palliative Care; by Helen Mavis Farrar, Kelley Easterling Scott; 5/26This qualitative descriptive study explored nursing perspectives on end-of-life care quality across 3 distinct community settings: long-term care facilities, patients' homes, and social model hospice homes. Nurses provide most of the direct end-of-life care in these settings, yet their perspectives remain understudied. Semi-structured interviews were conducted with 11 licensed nurses who had provided end-of-life care across all 3 settings. Analysis revealed 4 major themes: (1) setting-based care disparities, (2) nurses as educators and translators, (3) mediation of caregiver burden across settings, and (4) relationship-based care as foundational for peaceful deaths. Care setting profoundly influenced these nurses' ability to deliver quality end-of-life care. 

Referral and utilization patterns for home-based palliative care services among older adults BMC Palliative Care; by Joohyun Chung, Aaron Langlois, TylaAnn Burger, David L Chin; 6/11/26 Background: Home-based palliative care (HPC) improves quality of life for individuals with serious illness but remains underutilized in the United States, with persistent disparities in access. HPC is also frequently misconceived as appropriate only at the end of life. ... Results: ... Patients who received HPC were more likely to be older, female, insured through Medicare Part B, and referred from larger hospitals. Conclusion: These findings underscore ongoing structural disparities in access to home-based palliative care and highlight the need for targeted strategies to improve equitable access to HPC services.

Family caregivers' perspectives on challenges and support needs in hospital-based palliative care for persons living with dementia Baylor Medicine | Texas Medical Center Documents ; by Jung Kwak, Anita Chary, Sarah Stayer, Kwaku Duah Oppong, Sumin Yoon, Snehal Patel, and Elizabeth A Kvale; originally pub 11/17/25, reposted online 6/23/26Palliative care needs of hospitalized persons living with dementia (PLWD) and their family caregivers remain poorly understood. ... Thematic analysis of interviews revealed three themes: the value of palliative care in navigating end-of-life uncertainty in dementia, uncoordinated and reactive care during hospitalization, and lack of guidance for post-hospital transitions. While caregivers valued palliative care for emotional and decision-making support, findings underscore the need for earlier integration and improved coordination across hospital teams to better support families.

Caregiving stressors and sleep outcomes: Examining group differences among caregivers of persons living with dementia The Journals of Gerontology; by Fei Wang, Seungjong Cho, Anne Conway, Yejin Heo, Christine Lau, Karyne Machry; 5/26Caring for persons living with dementia often involves high levels of physical demands and emotional burden, which may undermine caregivers’ sleep quality. Few studies have examined sleep health among Black caregivers of persons living with dementia, despite the fact that they are underrepresented in dementia research and experience poorer sleep outcomes compared to non-Hispanic White caregivers. Subjective caregiving stressor (i.e., role overload) was positively associated with sleep disturbance. A significant interaction showed that the association between role overload and sleep disturbance was stronger among Black caregivers than in non-Hispanic White caregivers. Findings also suggest that Black caregivers of persons living with dementia may experience greater vulnerability to the adverse role of role overload in relation to sleep.

Knowledge of advance care planning and advance directives among US adults: Implications for health policy and practicePalliative Care & Social Practice; by Anisah Bagasra, Gretchen Agans; 5/26Advance care planning (ACP) is the process of identifying and communicating values and goals in preparation for future shared decision-making in medical settings. Decisions are legally supported by an advance directive (AD) document designating healthcare agent(s) and future medical treatment preferences. Although important, ACP engagement in the United States remains low. Findings indicate persistent gaps in ACP and AD literacy among US adults, along with misconceptions about access, time, and costs that may be contributing to low engagement. Increasing public education and expanding access to knowledgeable professionals may help reduce barriers and promote more equitable engagement in ACP.

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.

Connecting through emotions: a social constructivist grounded theory on how palliative care clinicians use their emotions during consultations Journal of General Internal Medicine; by Katrien Moens MSc, Johan Bilsen PhD and Sofia C. Zambrano PhD; 6/15/26 Background: Palliative care clinicians are regularly exposed to emotionally laden situations. While emotions are an intrinsic part of their encounters with patients and relatives, the role of clinicians’ own emotions has remained understudied. Conclusions: Our findings suggest that palliative care clinicians use their strong emotions during consultations to build connection. When met with awareness and reflection, these emotions can serve as a valuable resource for delivering patient- and relationship-centered palliative care. Future research should explore clinicians’ training needs and attitudes towards emotional skills training more broadly.

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.