Stephanie P. Wladkowski

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.

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.

Background: Live discharges from hospice are often distressing for patients, caregivers, and hospice providers alike, disrupting care continuity and leading to emotional and logistical challenges. Despite Medicare’s discharge planning requirement, no standardized process currently exists for hospice-initiated discharges, resulting in variable quality of care transitions. In response, a Live Discharge Protocol (LDP) was developed; however, the usability of this protocol in practice has not been evaluated. Methods: Purposive, convenience sampling occurred over 1 month. Participants were hospice social workers (n = 10), and hospice nurses (n = 10) recruited through professional networks and social media. Open-ended survey questions were used, and data was analyzed using conventional content analysis. Results: Across all four steps of the LDP, no concerns with the clarity of language, instructions, and flow of the LDP were reported; however, challenges in implementation were noted across steps. Specifically, collaboration with team members and having clear roles, managing the logistics of discharge, supporting the patient/caregiver reactions to the discharge, and incorporating a new practice into existing work structure. Conclusions: An explicit Live Discharge Protocol has strong potential to enhance the quality and consistency of a live discharge from hospice care. The LDP provides a framework to help smooth the transition from hospice care and provides patients and families with post-discharge support. Feedback from hospice professionals affirmed the relevance and usability of each step within the LDP, while also identifying opportunities for refinement for future implementation.

A live discharge from hospice results in disruption of care continuity. Currently, there is no explicit hospice discharge process available for this care transition. This study aimed to garner a deeper understanding of U.S. hospice social worker's preparation for a live discharge and the accompanying challenges. Three key themes arose: the complexities of preparing for a live discharge, the necessary tasks for preparing patients and caregivers, and logistical and emotional challenges associated with preparing for a discharge. Findings demonstrate the intricacies of conducting a live discharge and the need for more research to support a standardized and reimbursable discharge process.

Doctoral program attrition is a significant issue, with 50% of doctoral students leaving their program before completion. Personal life events, such as marriage and children, are risk factors for attrition, but little research has focused on factors that positively affect persistence and success through these life events. In a nationwide survey project, individuals who had been pregnant during their doctoral program in the United States (n=626) suggested strategies and approaches that pregnant students could implement to support continued success in doctoral education, highlighting the voices of those with lived experience with doctoral education and pregnancy. Thematic analysis identified four primary themes in the responses: the creation of systems that support success, the need for clear expectations, the importance of productivity, and the feasibility of success. Implications for doctoral programs and social work educators include the need to identify ways that programs can activity support students through pregnancy, remain informed about supports and accommodations for pregnant students, and consider options to allow for a slow-down in productivity without penalty to the student.

Hospice care in the US is heavily regulated to ensure access to the Medicare Hospice Benefit (MHB) for individuals with serious illness. Policy changes to the MHB, many of which intended to minimize potential fraud (e.g. focused medical reviews; documentation requirements for certifications, recertifications, and discharges; requirements of physician narratives and face-to-face visits), directly impact current hospice discharge practices and experiences. When patients revoke hospice or are unable to be recertified due to a stabilized condition, they lose access to the holistic philosophy of care and experience additional stressors with increased potential for burdensome transitions. Patients with chronic conditions, such as Alzheimer's disease or related dementias, Chronic Obstructive Pulmonary Disease, or heart failure are more likely to have longer length of stays and are more often discharged alive from hospice. Few policy changes have been made to account for growing incidents of patients dying of chronic illness though the policy was originally created primarily for cancer patients, reflecting a time when most patients were dying of cancer. This manuscript describes the uniquely American phenomenon of a hospice live discharge, reviews relevant and historical policies, and provides recommendations for future research, policy, and practice to better support patients and families during this critical healthcare transition.