Literature Review

Exploring a collective grief experience in the U.S.: Qualitative findings from older parents whose only child has diedOmega; Yongqiang Zheng, Leslie G Wuest, Jeongah Kim, Rebecca A Rodriguez; 6/25Despite its profound physical and mental health impacts, research on the loss of an only child in later life among older U.S. adults remains scarce. This phenomenological qualitative study explores the lived experiences and meanings older bereaved parents attribute to their loss. Inductive thematic analysis revealed 6 themes: the enduring intensity of grief, significant secondary losses, feelings of isolation and alienation, the role of social support in coping, and spirituality and religion's influence on their journey. By amplifying these parents' voices, the study lays a foundation for understanding their unique grief and underscores the gaps in U.S. policy and mental health services. These findings deepen insight into an understudied population, highlighting the need for enhanced resources for older bereaved parents.

Effectiveness of an educational intervention in enhancing end-of-life care understanding and decision-making in African AmericansPalliative & Supportive Care; Delicia Pruitt, Megan Reilly, Stephen Zyzanski, Neli Ragina; 7/25AA [African American] patients are more likely than other ethnic groups to choose life-sustaining measures at the end of their lives, leading to patients not receiving care to help them die peacefully. This decision is partly based on lack of knowledge of the available EOL [end of life] care options. An educational tool like the one developed in this study may be helpful and lessen the time of education so that physicians can answer questions at the end of the session and empower individuals and communities to take an active role in creating a culture of wellness at the EOL and decreasing morbidity.

Palliative video consultation and symptom distress among rural inpatients-A randomized clinical trialCritical Care Medicine; Marie A. Bakitas, DNSc, RN; Shena Gazaway, PhD, RN; Felicia Underwood, MSW, MPS, LICSW-S; Christiana Ekelem, BS; Vantrice T. Heard, PhD; Richard Kennedy, MD, PhD; Andres Azuero, PhD; Rodney Tucker, MD, MMM; Susan McCammon, MD, PhD; Joshua M. Hauser, MD; Lucas McElwain, MD; Ronit Elk, PhD; 7/25The triple threat of rural geography, racial inequities, and older age has hindered access to high-quality palliative care for many people in the US. Only 70% of the deep South vs 85% to 94% of the rest of the US has palliative care despite the deep South having the greatest needs due to suboptimal health care access and elevated morbidity and mortality. In this RCT [randomized clinical trial] among Black or African American and White chronically ill hospitalized adults, culturally based specialist palliative care video consultation was not associated with statistically significant reduced symptom distress compared with usual care, but there was a clinically meaningful difference ... between groups. Contrary to our hypotheses, intervention participants’ QOL [quality of life] and resource use (secondary outcomes) also were not improved. Assistant Editor's note: This study reminds us that palliative care delivered virtually, as opposed to in-person, may not be of benefit to some individuals. It also reminds us that palliative care, at its best, is delivered on an ongoing basis by a known, trusted professional, as opposed to a one-time session with a consultant. 

Collective leadership in home-based palliative care: Advancing APRN roles to enhance successHome Health Care Management & Practice; Nicole DePace, MS, APRN, GNP-BC, ACHPN; Rebecca Souza, DNP, ANP-BC, ACHPN; Therese Rochon, MA, MS, FNP-C; Paula Rego, DNP, AGPCNP-BC; Constance Dahlin, MSN, ANP-BC, ACHPN, FPCN, FAAN; 6/25Palliative advanced practice registered nurses are instrumental in responding to the opportunities and challenges in home-based palliative care through advocacy, practice, education, program development, and leading interprofessional teams. Collective leadership is proposed as a framework to address these tensions in home-based palliative care. Two cases are presented to compare and contrast collective and traditional leadership models, illustrate the role of the palliative advanced practice registered nurse leader, demonstrate how to avoid the pitfalls of a traditional leadership model, and build sustainable success through collective leadership principles. Finally, strategies to engage advanced practice registered nurses in leadership roles and address the tensions of the policy gaps in home-based palliative care are provided.

Utilization of antibiotics for the treatment of urinary tract infections in end-of-life patientsAmerican Journal of Hospice and Palliative Medicine; by Abigail Thomas, Lacey Davis, Allie Dolan, Rebecca Prewett; 8/25The use of antibiotics for end-of-life patients is controversial; currently there is limited guidance on the use of antibiotics in hospice patients... The purpose of this project is to examine the utilization of antibiotics for urinary tract infections (UTIs) in hospice patients... The prescribing of antibiotics in end-of-life patients is not always appropriate regardless of the PPS. This may indicate that antibiotics are initiated in asymptomatic hospice patients, and the utilization of unnecessary medications presents the risk of adverse effects.

Mapping the final journey: End-of-life frailty trajectories and cause of deathJournal of the American Geriatrics Society; Jianhong Xu, Jonathan Ka-Long Mak, Qian-Li Xue, Chenkai Wu; 6/25Frailty trajectories at the end of life varied by cause of death, with neurodegenerative disease decedents exhibiting more severe frailty. Among 37,465 decedents, 2,895 (7.7%) died from neurodegenerative diseases [and] three distinct frailty trajectories were identified among these decedents: rapidly progressive frailty (6.9%), moderate progression of frailty (21.1%), and advanced and stable frailty (72.0%). These patterns differed significantly from those observed in decedents with other causes of death, who exhibited persistently low frailty (24.7%), intermediate and progressive frailty (46.5%), and advanced and progressive frailty (28.8%). Compared to cancer decedents, individuals with neurodegenerative diseases had higher baseline frailty and a dominant trajectory of advanced and stable frailty. Older age, lower education, and greater chronic disease burden were associated with the advanced and progressive frailty trajectory.

Facilitating advance care planning conversations among patients with cancer and their care partners utilizing a conversation game: A pilot studyCancer Reports; Kylee Kimbel, Michael Hayes, Morgan Bucher, William A Calo, Tullika Garg, Monika Joshi, Hannah Kuntz, Terrence E Murphy, Erika VanDyke, Emily Wasserman, Lauren J Van Scoy; 6/25Current guidelines [for patients with cancer] recommend early, frequent advance care planning (ACP) conversations among clinicians, patients, and care partners (CPs) and advance directive (AD) completion. However, only 55% of patients with cancer have completed such directives, suggesting the need for interventions to increase rates of ACP. The Hello game has been shown to be effective in promoting ACP in several populations but has not been tested in patients with cancer or their CP. Three themes emerged from both patient and CP focus groups ...: (1) Participants enjoyed the group dynamics and relating to peers when playing Hello; (2) Hello serves as a helpful conversation starter; (3) modifications could help tailor Hello for use in cancer context-particularly adding more questions about quality of life and mental health. Hello was well-received by dyads, and their feedback was used to tailor Hello for patients with cancer and their CPs.

Addressing the underutilization of hospice care in Asian American communities: A scoping reviewAmerican Journal of Hospice and Palliative Medicine; Tuzhen Xu, PhD, APRN, FNP-C; Dan Song, PhD, RN; Gloria M. Rose, PhD, NP-C; 6/25Despite national improvements in hospice care, utilization remains low among Asian American (AA) communities. Identified barriers to hospice utilization included language and communication challenges; cultural values and beliefs surrounding death; family-centered decision-making and filial piety; religious influences such as beliefs in karma and suffering; and broader issues like low acculturation and mistrust of the healthcare system. Comprehensive cultural competence training is needed for healthcare providers, especially physicians, nurse practitioners, registered nurses, and social workers involved in hospice and palliative care.

Measuring goal-concordant care using electronic clinical notesJAMA Network; by Catherine L. Auriemma, Anne Song, Lake Walsh, Jason Han, Sophia Yapalater, Alexander Bain, Lindsay Haines, Stefania Scott, Casey Whitman, Stephanie Parks Taylor, Gary E. Weissman, Matthew J. Gonzales, Roshanthi Weerasinghe, Staci J. Wendt, Katherine R. Courtright; 7/3/25In this longitudinal cohort study among 109 patients with serious illness and limited prognoses, clinicians reviewed and classified 398 epochs of care as goal concordant (50%), goal discordant (19%), or of uncertain concordance (32%) with nearly perfect interrater agreement for categorizing the type of care received. These findings suggest that using electronic clinical notes to measure goal-concordant care is feasible, laying the groundwork for future automated text-based classification methods to improve reliability and pragmatism of measuring goal-concordant care for clinical and research use at scale.

Grief and bereavement in pediatric palliative care #502Journal of Palliative Medicine; by Lori Wiener, Meaghann S. Weaver; 6/25Grief is the natural emotional response to loss. In pediatric illnesses, grief may be a response to physical loss (a patient missing her own bedroom while admitted to the hospital), a relational loss (separation from peer friendships due to extended hospitalizations), and loss of meaning (ambitions, dreams, or hopes for the future are compromised by a life-limiting illness). For children and families, grief often begins at the time of diagnosis and fluctuates through the disease trajectory.

A life-affirming palliative care model for severe and enduring anorexia nervosaAMA Journal of Ethics; by Jonathan Treem, Joel Yager, Jennifer L. Gaudiani; 9/23Some individuals with severe and enduring anorexia nervosa experience dramatically degraded quality of life in the face of refractory illness and compulsory treatment. We propose a palliative care (PC) model for this group of patients that aims to support their unique goals of care, improve social-professional function, reduce physical suffering, and honor the whole person. Far from representing a pre-hospice model, a PC model for those with severe and enduring anorexia nervosa instead provides an alternative to current practices in hopes of meaningfully improving quality of life and outcomes.Publisher's note: While slightly dated, this article recently came across my desk and was a reminder of ethical issues in serious illness care for people with anorexia nervosa.

Clinicians’ perceptions about institutional factors in moral distress related to potentially nonbeneficial treatmentsJAMA Network Open; Teva D. Brender, MD; Julia K. Axelrod, BA; Sofia Weiss Goitiandia, MA, MSc; Jason N. Batten, MD, MA; Elizabeth W. Dzeng, MD, PhD, MPH; 6/25In this qualitative study, we described institutional factors that may exacerbate, prevent, or mitigate the influence of societal factors contributing to moral distress related to potentially nonbeneficial LST [life-sustaining treatments]. Health systems should consider how health care consumerism influences patients’, families’, and clinicians’ expectations regarding potentially nonbeneficial LST, particularly at hospitals with advanced technological interventions (eg, organ transplantation, extracorporeal membrane oxygenation, salvage chemotherapies). Future studies should explore the societal and institutional factors contributing to moral distress for clinicians at lower-resourced hospitals, such as inaccessible advanced treatments and barriers to transferring patients for higher levels of care. While some institutions lacked sufficient structures to support clinicians’ efforts to de-escalate potentially nonbeneficial treatments, policies empowering clinicians across the medical hierarchy, as well as conflict resolution and emotional support resources (eg, palliative care) might prevent or mitigate moral distress.

Top ten tips palliative care clinicians should know about managing diabetes at end-of-lifeJournal of Palliative Medicine; by Rebekka DePew, Tonya Hershman, Monica Giles, William E Rosa, Kimberly Curseen; 6/25Palliative care clinicians will regularly take care of patients with diabetes and play numerous roles in educating not only patients but also families and care partners regarding the changing balance of harms and benefits of blood glucose control as patients near end of life (EOL). There is limited evidence regarding the optimal timing and process for de-escalation of blood sugar monitoring and diabetes medications (including insulin) in the hospice and EOL setting.