Live Discharge of Hospice Patients with Alzheimer's Disease and Related Dementias: A Systematic Review.

Background: Hospice is intended to promote the comfort and quality of life of dying patients and their families. When patients are discharged from hospice prior to death (ie, experience a "live discharge"), care continuity is disrupted. This systematic review summarizes the growing body of evidence on live discharge among hospice patients with Alzheimer's Disease and related dementias (ADRD), a clinical subpopulation that disproportionately experiences this often burdensome care transition. Methods: Researchers conducted a systematic review in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Reviewers searched AgeLine, APA PsycINFO (Ovid), CINAHL Plus with Full Text, ProQuest Dissertations & Theses Global, PubMed, Scopus, and Web of Science (Core Collection). Reviewers extracted data and synthesized findings from 9 records, which reported findings from 10 individual studies. Results: The reviewed studies, which were generally of high quality, consistently identified diagnosis of ADRD as a risk factor for live discharge from hospice. The relationship between race and live hospice discharge was less clear and likely dependent upon the type of discharge under investigation and other (eg, systemic-level) factors. Research on patient and family experiences underscored the extent to which live hospice discharge can be distressing, confusing, and associated with numerous losses. Conclusion: Research specific to live discharge among ADRD patients and their families is limited. Synthesis across included studies points to the importance for future research to differentiate between types of live discharge-revocation vsversus decertification-as these are vastly different experiences in choice and circumstances.

Improving Policy and Practices of Hospice Live Discharge: A Historical Exploration of the Medicare Hospice Benefit.

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.

Hospice serves 1.72 million people a year, of which 15.4% are discharged alive, a process impacted by policy.Live discharges are disruptive for patients, families, clinicians, and agencies, but little guidance exists in policy.Policy changes focus on minimizing fraud related to long-lengths of stay, which disproportionately occur for chronic illnesses where six-month prognostication is a challenge.Changes to hospice policy do not account for growing incidents of chronic illness, even though the policy was originally created for cancer patients, the primary cause of death at that time.Understanding policy connections to hospice live discharge is pertinent to identifying solutions for improvement.

Alzheimer's Disease and Related Dementias: Caregiver Perspectives on Hospice Re-Enrollment Following a Hospice Live Discharge.

Background: The number of individuals dying of Alzheimer's disease and related dementias (ADRDs) is steadily increasing and they represent the largest group of hospice enrollees. In 2020, 15.4% of hospice patients across the United States were discharged alive from hospice care, with 5.6% decertified due to being "no longer terminally ill." A live discharge from hospice care can disrupt care continuity, increase hospitalizations and emergency room visits, and reduce the quality of life for patients and families. Furthermore, this discontinuity may impede re-enrollment into hospice services and receipt of community bereavement services. Objectives: The aim of this study is to explore the perspectives of caregivers of adults with ADRDs around hospice re-enrollment following a live discharge from hospice. Design: We conducted semistructured interviews of caregivers of adults with ADRDs who experienced a live discharge from hospice (n = 24). Thematic analysis was used to analyze data. Results: Three-quarters of participants (n = 16) would consider re-enrolling their loved one in hospice. However, some believed they would have to wait for a medical crisis (n = 6) to re-enroll, while others (n = 10) questioned the appropriateness of hospice for patients with ADRDs if they cannot remain in hospice care until death. Conclusions: A live discharge for ADRD patients impacts caregivers' decisions on whether they will choose to re-enroll a patient who has been discharged alive from hospice. Further research and support of caregivers through the discharge process are necessary to ensure that patients and their caregivers remain connected to hospice agencies postdischarge.

Suicide and Hospice Caregivers: A Case Study.

In 2020, hospices supported 1.72 million Medicare patients and their caregivers. The end-of-life experience can be difficult for caregivers and many experience anxiety, depression, and suicidality. Little literature has explored the role of hospice social workers in addressing and treating caregivers' suicidal thoughts and behaviors. This paper will explore the topic of hospice caregiver suicide, using a case study to illustrate relevant issues, practices, and needs. Implications for hospice social work practice are included.

Identifying Key Domains and Implementation Challenges for a Live Discharge From Hospice Protocol.

Background: Hospice agencies lack an explicit live discharge process to guide practitioners in transitioning these patients and their primary caregivers (PCGs) out of hospice care. Based on previous research and input from an advisory committee, a live discharge protocol (LDP) was drafted with .three general areas of assessment: 1) concrete services; 2) psychosocial assessment; and 3) 30-day post discharge follow-up phone call. This study sought to gather perspectives from hospice social workers on the proposed assessment components and other needs in implementing a LDP. Methods: Purposive, convenience sampling occurred over 4 months. Participants were hospice social workers (n = 14) recruited through personal and professional contacts and social media. Four focus groups were conducted via Zoom. Data was analyzed using thematic analysis. Results: Three major themes appeared: 1) benefits and challenges of having a structured discharge protocol (n = 14); 2) need for specific LDP roles across team members (n = 11); and 3) education and clear boundaries for both patients/PCGs and professionals (n = 9). Conclusions: All three assessment components of the preliminary LDP were deemed necessary by participants; however, implementation challenges were both unique for each agency and reflective of the broader hospice culture. Further research is needed to measure the impact of the LDP.

Grief and Loss During Care Transitions: Experiences of Direct Care Workers.

Direct Care Workers (DCW) provide both personal care to patients and emotional support to patients and caregivers in hospice and palliative care. DCWs often develop close ties and are then expected to work with new clients immediately following a care transition, with little or no time to grieve. A qualitative pilot study (n = 24) was conducted to explore the experience of DCWs during care transitions. Data was collected via focus groups and individual interviews. Thematic analysis was used. Results suggest DCWs managed their experiences (n = 19), by anticipating and accepting grief and loss (n = 21), employing personal coping strategies (n = 19), and saying good-bye (n = 15). Relational factors impacted the experience of care transitions (n = 22), including building and maintaining the relationship (n = 14), and the strength of perceived connections (n = 15). Increased organizational support and training to help address grief and loss will better support DCWs and the direct care workforce.

The Forgotten and Misdiagnosed Care Transition: Live Discharge From Hospice Care.

Every aspect of the United States healthcare industry presents transitions in care-hospitalizations, rehabilitation, long-term care placement-each requiring careful attention. With a goal of maintaining safety during a known point of vulnerability for patients, discharge planning is required in hospitals, skilled nursing facilities, and home health agencies under Medicare guidelines. Yet, no required discharge planning or clear guidelines are available for a discharge from hospice; it is a forgotten care transition in our healthcare system. Of the 1.6 million Medicare recipients hospices serve each year, hospices discharge 17.4% alive. Under Medicare regulations, if clinicians cannot document acceptable patient decline, then patients are decertified from hospice categorized as "no longer terminally ill", otherwise known as a live discharge. These patients are often referred to as "not dying fast enough," or "failure to die on time," as ultimately, they are still dying, and they are still terminally ill, just not within the prescribed 6-month framework. This paper outlines what is known about the occurrences and experiences of live discharge from hospice care and provides suggestions for improving both practice and policy.

Direct Caregiving in Older Adults: How Systems of Care Perpetuate the Grand Challenges and What Social Workers Can Do about It.

Direct care workers (DCWs) provide personal care, emotional support, and companionship, helping older adults maintain quality lives. DCWs earn low wages, have little training, and experience high turnover rates. While the demand for DCWs grows, real wages continue to fall. Undervaluing DCWs threatens the continuity and quality of care that older adults receive. Through the social work grand challenges lens, this article discusses two qualitative studies, in home care (n = 24) and nursing homes (n = 23), that demonstrate that while DCWs help advance long and productive lives, they experience extreme economic inequality and lack equal opportunity and justice. The article concludes with a discussion of social work's role in advancing opportunity and justice.

Live discharge from hospice care: psychosocial challenges and opportunities.

Hospice social workers face many challenges in attempts to replicate or supplement the holistic support and unique services hospice provides for individuals discharged alive. This discontinuity in care can impact the types of supports needed by individuals and caregivers, which may or may not be accessible within their community. Patients and families who have access to community-based palliative care programs following a discharge generally tend to navigate the process with fewer challenges. This qualitative study (N = 24) explored both the challenges of the live discharge process and the opportunities within social work practice in the US. Results from this study emphasize the need for a framework to better approach a live discharge to ensure appropriate supports are accessible for all patients and caregivers. Specifically, results highlight both the concrete and psychosocial challenges in live discharges as a result of tension between current eligibility requirements and individual feelings and needs. Social workers also provided suggestions to improve the live discharge process, including attention to communication and preparation. This paper outlines specific challenges of live discharge from hospice, a framework for understanding presented challenges, and implications for policy and practice.

Considerations for Developing Online Bereavement Support Groups.

The loss of a family member or friend can have profound psychological and physical implications, particularly for individuals without bereavement support services. Online support groups can be an effective means of extending services beyond the traditional modes of delivery. This is especially true for populations that include isolated individuals and those with limited support networks, limited transportation, challenging time commitments, or reside in communities with limited services available. The literature over the last 10 years was reviewed to discern the potential opportunities and challenges of providing online bereavement support group services. Discussed are challenges for recruitment of participants, availability of technology resources, addressing privacy and confidentiality issues, participants' knowledge of technical equipment, legal considerations, ethical considerations, accessibility, and other best practices. Diverse populations such as adolescents, older adults, and rural communities must be uniquely considered when using online support groups.

A Theoretical Exploration of Live Discharge from Hospice for Caregivers of Adults with Dementia.

Patients with dementia may be discharged from hospice if their condition stabilizes. The loss of professional support and an already complex grief process needs careful attention. A live discharge presents a unique experience for each hospice patient, caregiver, and hospice team, which varies from traditional bereavement theories used to describe the grieving process. This article explores live discharge from hospice for caregivers of adults with dementia through a theoretical lens of Symbolic Interactionism (SI) and Attachment Theory (AT). The theories of SI and AT support and assist in understanding the experience of caregivers who lose hospice support due to ineligibility. In addition, caregivers watch the gradual deterioration and psychological loss of someone with dementia while they remain alive described as an ambiguous loss. Ambiguous loss as a subset of traditional bereavement theories provides a framework for this exploration and provides a relevant illustration of the complex needs. This article will conclude with implications for social work practice. It is important for hospice clinicians to be aware of current termination practices necessary to manage appropriate attachments, support the symbolic meaning of the hospice experience, validate the ambiguous losses, and maintain a sense of hope through a live discharge from hospice.

Grief During the COVID-19 Pandemic: Considerations for Palliative Care Providers.

The COVID-19 pandemic is anticipated to continue spreading widely across the globe throughout 2020. To mitigate the devastating impact of COVID-19, social distancing and visitor restrictions in health care facilities have been widely implemented. Such policies and practices, along with the direct impact of the spread of COVID-19, complicate issues of grief that are relevant to medical providers. We describe the relationship of the COVID-19 pandemic to anticipatory grief, disenfranchised grief, and complicated grief for individuals, families, and their providers. Furthermore, we provide discussion regarding countering this grief through communication, advance care planning, and self-care practices. We provide resources for health care providers, in addition to calling on palliative care providers to consider their own role as a resource to other specialties during this public health emergency.

Using Social Network Analysis to Assess Professional Network Development among AGESW Pre-Dissertation Fellowship Program Participants.

Professional networks are important for the success of doctoral students and early career faculty members, yet there is little research about what types of experiences help emerging scholars develop these networks. Social network analysis may be an ideal method for studying the effectiveness of training programs in nurturing network development among emerging scholars. We describe one application of this method, which was used to examine the professional networks formed through participation in the Association of Gerontological Education in Social Work (AGESW)'s Pre-Dissertation Fellowship Program (PDFP). Alumni (n = 12) from the first three cohorts of the program (2010-2012) reported meeting an average of 20 scholars (SD = 13.2) through AGESW, which led to potential professional interactions and collaborations on conference presentations and manuscripts. Although challenges with missing data limited the conclusions that can be drawn, we find that this method holds promise for helping to identify key factors that facilitate professional network development in pre-dissertation training programs such as the PDFP.

Turning Doctoral Students into Faculty in Gerontological Social Work: The AGESW Experience.

Developing faculty interested in aging may help social work meet the needs of our growing aging population. However, doctoral students need a variety of supports to complete PhDs and become gerontological social work faculty. This study explored one program's role in supporting the development of social work doctoral students to faculty in gerontology. An e-mail invitation was sent to all former participants (2010-2016 cohorts) of the Association for Gerontology Education in Social Work (AGESW) Pre-Dissertation Fellows Program (PDFP). The 38-question online survey consisted of Likert-type scales, multiple answers, and one open-ended question per section about the program's impacts on their academic career development in teaching, research, mentoring, and support. Forty-five respondents, representing all six cohorts, completed the survey. More than half reported that the PDFP contributed to their ability to publish their research (64.4%, n = 29), grow their professional network (86.7%, n = 39, and teach (55.5%, n = 25). Doctoral programs provided different experiences than the PDFP, including mentoring, methodological training, professional development, networking, and peer support. Results suggest the PDFP provides content recipients value that supplements instruction received in their institutions. The program's ability to connect students to each other and to national leaders enhances their career development and socialization into academic roles.

What Can an Evaluation of the AGESW Predissertation Fellows Program Tell Us about the Mentoring Needs of Doctoral Students?

Good mentoring is a key variable for determining success in completing a doctoral program. The Association for Gerontology Education in Social Work (AGESW) provides leadership in the areas of gerontological social work education, research, and policy. In 2010, AGESW began offering the Pre-Dissertation Fellows Program (PDFP) to enhance social work doctoral students' professional development and skillset for academia. The purpose of this study was to examine student participants' perceptions of the PDFP in its role to providing mentorship and training for an academic position that encompasses research, teaching and professional service. This qualitative study examined eight cohorts (2010-2018) of the AGESW PDFP (N = 85). Participants identified a number of aspects of professional development gained, gratitude for the training, an appreciation for candid advice received, and areas of professional development they felt they were lacking within their doctoral training. Implications for doctoral education, doctoral mentorship programs, and the AGESW pre-dissertation program are discussed. Further, programs such as AGESW pre-dissertation fellowship program can serve as a model for other doctoral training initiatives to prepare students to work in academia.

Current Practices of Live Discharge from Hospice: Social Work Perspectives.

Hospice provides holistic support for individuals living with terminal illness and to their caregivers during the bereavement period. However, some individuals who enroll in hospice services are decertified as they do not experience a decline in health as quickly as required by current regulations, a practice referred to as a live discharge. The interruption in care can affect the physical and psychosocial care needs for individuals and caregivers and leave hospice clinicians with questions about how to best support them. However, there are no formal guidelines to support this process. This qualitative study (N = 24) explored the current practices of hospice social workers across the United States engaged in the live discharge process. Results from this study emphasize the need to bridge the gaps between policy and practice. Specifically, results highlight the challenges hospice social workers face to replicate or supplement the holistic support and unique services hospice provides for individuals discharged alive, and suggest further research to develop live discharge guidelines to identify appropriate support for patients and their caregivers who no longer meet hospice eligibility requirements.

Dementia Caregivers and Live Discharge from Hospice: What Happens When Hospice Leaves?

Hospice offers holistic support for individuals living with terminal illness and their caregivers. Some individuals receiving hospice services experience a slower decline in health as than expected, resulting in a 'live discharge' from hospice. A live discharge affects both patient and caregiver(s).The current study (N=24) explored the experiences of caregivers of adults with dementia who experienced a live discharge from hospice. Findings emphasize the comprehensive services covered under the Medicare Hospice benefit and those lost after a live discharge. Implications for social workers supporting caregivers are discussed, including the need to view the patient-caregiver unit during a live discharge.

Live Discharge from Hospice and the Grief Experience of Dementia Caregivers.

When an individual has dementia, family members are involved in many care transitions in their roles as caregivers. One such transition is the 'live' discharge from hospice services. This occurs when an individual no longer meets eligibility criteria. This can be difficult for caregivers who have been anticipating an end to understand in the context of their grief process. This qualitative study (N = 24) explored the experience of caregivers of adults with dementia, including Alzheimer's disease, who experienced a 'live' discharge from hospice. Specifically, the experience of grief is examined. Results from this study highlight the complexity of caring for someone with a terminal disease and the grief experience in end-of-life care as caregivers struggle to understand the individual's terminal prognosis as temporary. This is further complicated for caregivers who must resume caregiving responsibilities or assume a new caregiving role after experiencing a loss of hospice services. Finally, hospice social workers are well positioned to offer emotional and other concrete support to caregivers who experience a 'live' discharge.