Cara L. Wallace

Hospice patients with Alzheimer's disease and related dementias (ADRD) are more likely to experience a live discharge. This places increased burden on primary caregivers who may be unprepared for this transition and are more likely to be socially isolated. This study explored primary caregivers' "Circle of Support" (CoS) and how social context influences service utilization patterns, perceived support, and experiences of care transitions following a hospice live discharge. Semi-structured interviews were conducted with 32 caregivers and analyzed using thematic analysis. Caregivers described their CoS, how their CoS functioned (or failed to function) post-hospice, and key caregiver and network attributes affecting support use. Findings show that caregivers reporting no changes in their tasks after discharge described more absent CoS functions. Experiences were also influenced by patient location of care and resources availability, suggesting opportunities for targeted interventions to improve caregivers' experiences and outcomes.

Although high-quality and holistic specialty palliative care is delivered by an interprofessional team, little guidance is available to optimize approaches to and sustainment of such teamwork. This article supports individuals to practice at the top of their education, clinical training, and scope of practice while maximizing the functionality of the palliative care team as a whole. We intentionally use the term interprofessional rather than interdisciplinary to clarify that we are focused on collaboration of team members who represent multiple professions or occupations that require specialized training and meet ethical standards (e.g., nursing, chaplaincy, social work, medicine, and pharmacy) rather than interactions among specific fields of study (e.g., cardiology, nephrology, and oncology). Synthesized from current data and best practices elicited from an interprofessional author team of palliative specialists, these ten tips aim to bolster collaboration, integration, and communication among palliative care team members, community providers, and referral sources. Topics are relevant for all teams across practice settings to promote and advance integrated teamwork, patient care, leadership, and research.

Emerging evidence suggests that researchers studying sensitive topics are prone to secondary emotional distress, and graduate students and trainees are particularly vulnerable as novice researchers. While many studies account for potential emotional distress in participants of research on sensitive topics, very few include considerations for mitigating emotional harm to researchers. Therefore, this article examines the experiences of graduate research assistants in a study on live discharge from hospice care. Distress stemmed from repeated exposure to sensitive narratives, blurred role boundaries, and personal identity challenges, with prolonged participant engagement deepening the emotional impact. Coping strategies included debriefs, mentorship, and self-care practices. These findings highlight the ethical need to integrate researcher well-being into study design, especially for novice researchers. Institutions and principal investigators might use protocols including training, boundary-setting guidance, and mental health resources to protect researchers’ mental health.

Trauma is a personal stress response to experiences perceived as harmful or life-threatening, and has ongoing impacts on illness and health. Exposure to trauma is increasingly prevalent, and the risk of medical trauma or re-traumatization is heightened for people living with serious illness. Trauma not only impacts health outcomes, but can also interfere with decision-making and worsen symptom burden at the end of life. Thus, it is critical that palliative care clinicians in all professions be skilled at providing high-quality trauma-informed care (TIC). TIC seeks to provide more holistic and equitable care through better understanding of how a person’s life situation impacts behavior, reactions, behavior, responses, or relationships. A clinician using a trauma-informed lens asks, “What has happened to this person?” instead of, “What is wrong with this person?” A “universal precautions” approach is recommended, encouraging broad acknowledgment of possible trauma and recognition of signs of trauma responses, to better understand triggers for medical retraumatization among patients, caregivers, and even us as clinicians. TIC provides a framework that guides clinicians to acknowledge the widespread experience and consequences of trauma, recognize the symptoms of traumatic stress, mitigate mistrust and disempowerment, and advocate for culture change in health care systems to reduce the risk of further health care-based traumatization.

Background: Palliative social workers play a critical role in serious illness care by addressing the biopsychosocial, spiritual, existential, and cultural needs of patients and families. Despite substantial professional infrastructure and contributions to equity and person-centered care, the profession faces persistent challenges related to recognition, funding, and visibility. These challenges are intensified by widening health inequities, policy threats to access to care, and national workforce shortages. Methods: To assess the current landscape and advance a coordinated professional agenda for palliative social workers in the United States, the Shaping the Future: Advancing Palliative Social Work Summit convened national leaders in palliative and health social work research, practice, and advocacy. A national survey of social workers providing serious illness care ( N = 350), an ongoing scoping review, and a two-day convening of leaders representing 15 organizations were used to develop a consensus-driven professional agenda. Survey data and Summit discussions were analyzed descriptively and thematically, with findings validated by participants. Results: Participants articulated a unified vision for the future of palliative social work, identifying priorities including formal recognition of social workers as essential interprofessional team members, advancement of equity-driven care models, development of a diverse and sustainable workforce, and strengthened cross-organizational collaboration. Consensus emerged around the need for coordinated advocacy, shared resources, targeted research investment, and public-facing strategies to increase visibility and impact. Conclusion: The Summit demonstrates a model for advancing palliative social work through intentional alignment collective leadership and coordinated action. Aligning shared priorities positions the field to strengthen its professional foundation and expand its impact across practice research education and policy. Sustained investment in palliative social work leadership and infrastructure is essential to ensuring the profession’s long-term viability and its capacity to meet the complex needs of people living with serious illness their families and communities.

Hospice care is designed to support the medical and psychosocial needs of individuals with serious illness and their caregivers through the dying process. Some individuals, though, leave hospice prior to death, generally referred to as disenrollment or a “live discharge.” Live discharge from hospice is a common and often distressing issue for hospice patients, their caregivers, and also for hospice professionals and agencies. This paper discusses common issues surrounding live discharge that clinicians and other healthcare professionals should consider when dealing with live discharge in their own clinical practices. Where applicable, we provide practical steps for hospice and palliative care clinicians to better support patients and families through this critical care transition. Further, we offer strategic directions interprofessional clinicians can take to affect systemic change to improve live discharge experiences.