Psychosocial Distress Screening Among Interprofessional Palliative Care Teams: A Narrative Review.

With increased need for palliative care and limited staffing resources, non-social workers are increasingly responsible for screening for urgent psychosocial distress. The National Consensus Project guidelines call for all palliative care team members to be competent in screening across domains. Yet, in contrast to an abundance of evidence-informed tools for palliative social work assessments, standardization for interprofessional psychosocial screening is lacking. This lack of standardized practice may lead to harmful disparities in care delivery. The purpose of this narrative review is to examine current literature on evidence-informed practices for psychosocial screening within palliative care. Google Scholar, a university Summon library search engine, and prominent palliative care journals were searched using the same phrases to locate articles for inclusion. Each article was reviewed and synthesized across common themes. Although an abundance of validated screening tools exists for outpatient oncology-specific settings, there is minimal guidance on psychosocial screening tools intended for specialty palliative care. The most oft-cited tools have been met with concern for validity across diverse palliative care populations and settings. Additional research is needed to operationalize and measure brief psychosocial screening tools that can be validated for use by interprofessional palliative care teams, a stepping-stone for increased equity in palliative care practice.

Top Ten Tips Palliative Care Clinicians Should Know About Attending to the Existential Experience.

Identifying and attending to the existential needs of persons with serious illness and their care partners are integral to whole-person palliative care (PC). Yet, many PC clinicians, due to individual factors and wider systemic barriers, are ill-prepared and under-resourced to navigate the existential dimension. In this article, written from clinical, research, and lived experiences, we offer tips to empower PC clinicians to understand, recognize, and respond to patients' and care partners' existential experiences by leveraging their existing skills, collaborating closely with colleagues, exploring their own existential experience, and implementing evidence-based interventions. We propose that by prioritizing existential care within PC, we can shift the culture of health care to better affirm the humanity of both patients and clinicians.

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.

Medical Aid in Dying: How Might U.S. Policy Prevent Suffering at the End of Life?

Medical aid in dying refers to policies that allow terminally ill patients to seek assistance from their medical providers to obtain medications to hasten death. In this paper, we used a 7-point policy analysis model to examine the diversity of medical aid in dying policies that exist in jurisdictions (states and territories) in the U.S. and the implications of these policies for suffering at end of life. As of this writing, these practices are available in 12 jurisdictions, including 11 states and the District of Columbia. Legalization has occurred via statutory approaches in 10 jurisdictions and permissive approaches in two jurisdictions. We discuss the structures of these laws, the requirements for participation, and the limitations created by having jurisdiction-specific policies on such broad, bioethical issues. Existing laws appear to relieve suffering in patients at end of life. Jurisdictional differences create barriers to comprehensive expansion but provide insights into practice in different contexts.

Meaning of Hospice Care: Perceptions of Patients and Families.

Background: About half of hospice-eligible adults die without hospice each year. Misconceptions about hospice are frequently identified as barriers to utilization, but hospice perceptions are not well documented. Objectives and Setting/Subjects: To examine perceptions of hospice (initial and post-enrollment) among 90 U.S. patients/families actively enrolled in a large, metropolitan hospice in Texas, and to identify factors associated with participant perceptions. Design and Measurement: Concurrent mixed methods and cross-sectional design collecting data via research questionnaire with Likert scales and open-ended questions. Wilcoxon signed-rank test determined differences between recall of initial hospice perceptions at time of referral and perceptions while actively receiving services; Fisher's exact and Kruskal-Wallis tests were used to examine bivariate relationships between perceptions of hospice and satisfaction with physician communication and demographic variables. Qualitative statements were analyzed using an inductive, content analysis approach. Results: There was a significant difference between participants' perceptions of hospice recalled from initial conversations compared with current perceptions following hospice enrollment (z = -6.44, P < .01). Initial perceptions of hospice were significantly related to satisfaction with physician communication (P = .011) and diagnosis (P = .019). Qualitative themes range from negative (ie hospice = death) to positive (ie comfort, support, loving staff) with 65.6% of participants demonstrating positive increases in understanding. Conclusion: Participants' perceptions of hospice were positively associated with satisfaction with physician communication prior to hospice enrollment, and potentially impacted by the experience of care itself. During hospice discussions, clinicians should elicit patient and family perceptions in addition to providing descriptions of eligibility and services.

Narrative Medicine for Healthcare Providers: Improving Practices of Advance Care Planning.

Advance care planning (ACP) conversations about treatment preferences and end-of-life goals relate to positive outcomes for patients and families, though ongoing barriers exist. Additionally, providers personal discomfort and personal experiences may influence how they engage (or avoid) ACP conversations. Narrative medicine (NM) offers one approach to help practitioners develop ability to hear and understand the story of others in ways that may overcome barriers to quality conversations. This study investigated the effectiveness of a 3-hour NM workshop to develop communication skills around ACP and facilitate reflection on the relationship between personal experiences and professional practices in ACP and end-of-life care. Twenty-five participants completed post-assessments of the workshop. Key themes included increased awareness, improved skills for active listening and eliciting stories, and improved understanding of how personal experiences shape professional practice. Results indicate practitioners value the NM approach to ACP suggesting this approach may provide impactful change in practice.

Advance Care Planning in Serious Illness: A Narrative Review.

CONTEXT: Advance care planning (ACP) intends to support person-centered medical decision-making by eliciting patient preferences. Research has not identified significant associations between ACP and goal-concordant end-of-life care, leading to justified scientific debate regarding ACP utility. OBJECTIVE: To delineate ACP's potential benefits and missed opportunities and identify an evidence-informed, clinically relevant path ahead for ACP in serious illness. METHODS: We conducted a narrative review merging the best available ACP empirical data, grey literature, and emergent scholarly discourse using a snowball search of PubMed, Medline, and Google Scholar (2000-2022). Findings were informed by our team's interprofessional clinical and research expertise in serious illness care. RESULTS: Early ACP practices were largely tied to mandated document completion, potentially failing to capture the holistic preferences of patients and surrogates. ACP models focused on serious illness communication rather than documentation show promising patient and clinician results. Ideally, ACP would lead to goal-concordant care even amid the unpredictability of serious illness trajectories. But ACP might also provide a false sense of security that patients' wishes will be honored and revisited at end-of-life. An iterative, 'building block' framework to integrate ACP throughout serious illness is provided alongside clinical practice, research, and policy recommendations. CONCLUSIONS: We advocate a balanced approach to ACP, recognizing empirical deficits while acknowledging potential benefits and ethical imperatives (e.g., fostering clinician-patient trust and shared decision-making). We support prioritizing patient/surrogate-centered outcomes with more robust measures to account for interpersonal clinician-patient variables that likely inform ACP efficacy and may better evaluate information gleaned during serious illness encounters.

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.

Prevalence and correlates of antisocial personality disorder in older adults.

OBJECTIVES: There is a paucity of research on antisocial personality disorder (ASPD) in the geriatric population and the majority of knowledge on the disorder is drawn from young adult samples. Researchers posit that the prevalence of ASPD as well as other personality disorders (PDs) is underestimated among older adults. Using a nationally representative sample, the present study examines the prevalence and correlates of ASPD in adults ages 50 and older. METHODS: We analyzed data from the National Epidemiologic Survey on Alcohol and Related Conditions Waves I and III. Multivariate logistic regression analyses were employed to investigate associations between ASPD and sociodemographic characteristics. A series of logistic regression analyses were also conducted to study associations between ASPD and medical conditions (liver and cardiovascular disease, arthritis, and stomach ulcer), major psychiatric disorders (lifetime major depressive disorder, mania, and generalized anxiety disorder), and substance use disorders (lifetime alcohol, marijuana, cocaine, heroin, and nicotine use disorders). RESULTS: Findings indicated that the prevalence of ASPD increases through early adulthood, with a peak at 3.91% in younger adults and decline to 0.78% in adults ages ≥65. Older adults with ASPD are more likely to be diagnosed with a substance use disorder, major depression, mania, and generalized anxiety disorder as well as each medical condition. CONCLUSION: Older adults with ASPD experience increased rates of medical and psychiatric comorbidities. These conditions exacerbate the existing challenges associated with diagnosing and treating this population and may have serious consequences for the patient, their caregivers and society.

Practice Considerations for Trauma-Informed Care at End of Life.

Trauma is widespread, and its symptoms can adversely impact wellbeing at end of life, a time when hospice seeks to maximize quality of life. This article reviews research on trauma at end of life, provides an overview of trauma-informed principles, and explores possibilities for applying trauma-informed care through an illustrative case study of a patient at end of life. The case discussion applies findings from the literature using Feldman's Stepwise Psychosocial Palliative Care model as a roadmap. As shown in the case study, trauma-related symptoms may complicate care, making it an important subject of clinical attention for interdisciplinary hospice team members. As part of this team, social workers are particularly well suited to provide more targeted interventions where indicated, though all members of the team should take a trauma-informed approach. Lastly, this article reflects on the need for organizations to take a systems-level approach when implementing trauma-informed care and suggests implications for practice through a universal approach to trauma and the need for trauma-specific assessments and interventions at end-of-life, along with areas for future research.

Intergenerational effects of childhood maltreatment: A systematic review of the parenting practices of adult survivors of childhood abuse, neglect, and violence.

A history of maltreatment in childhood may influence adults' parenting practices, potentially affecting their children. This systematic review examines 97 studies investigating associations of parental childhood victimization with a range of parenting behaviors that may contribute to the intergenerational effects of abuse: abusive parenting, problematic parenting, positive parenting, and positive parental affect. Key findings include: (1) parents who report experiencing physical abuse or witnessing violence in the home during childhood are at increased risk for reporting that they engage in abusive or neglectful parenting; (2) a cumulative effect of maltreatment experiences, such that adults who report experiencing multiple types or repeated instances of victimization are at greatest risk for perpetrating child abuse; (3) associations between reported childhood maltreatment experiences and parents' problematic role reversal with, rejection of, and withdrawal from their children; (4) indirect effects between reported childhood maltreatment and abusive parenting via adult intimate partner violence; and (5) indirect effects between reported childhood maltreatment and lower levels of positive parenting behaviors and affect via mothers' mental health. Thus, childhood experiences of maltreatment may alter parents' ability to avoid negative and utilize positive parenting practices. Limitations of this body of literature include few prospective studies, an overreliance on adults' self-report of their childhood victimization and current parenting, and little examination of potentially differential associations for mothers and fathers.

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.

Cost differential associated with hospice use among older patients with multiple myeloma.

BACKGROUND: Hospice is an effective end-of-life care approach for patients with incurable illnesses such as multiple myeloma; however, it has been historically underutilized. In addition to improving quality of life, hospice enrollment reduces healthcare spending in many incurable illnesses but this has been unstudied in the myeloma population to date. MATERIAL AND METHODS: Retrospective analysis of myeloma cases diagnosed from 2007 to 2013 in the Surveillance, Epidemiology, and End Results (SEER)-Medicare linked dataset. Included patients were: diagnosed at age 65 or older, received myeloma-directed therapy, had an overall survival >3 months, and were enrolled in Medicare the month preceding death. Costs included those paid by Medicare and patient copays during the 30 days preceding death. RESULTS: 2075 patients were included in the analysis. 56% were enrolled in hospice at end of life. Increasing age and female gender were associated with greater odds of hospice enrollment. Non-white race, Medicaid enrollment, and increasing comorbidities were associated with decreased odds. Hospice enrollment was associated with a $13,574 (p < .0001) decrease in costs; however, the maximal savings were observed by those enrolled >14 days prior to death. CONCLUSION: While improving quality of life should be the ultimate reason for increasing hospice utilization among patients with myeloma, there seems to be considerable cost implications as well.

Metamorphosis of a Gerontological Social Work Scholar.

My participation in the Pre-Dissertation Fellows Program (PDFP) was a defining moment in the development of my career. This commentary focuses on how my participation helped me transition from mentee to mentor and from PhD student to faculty member and scholar in gerontological social work and end-of-life care. While many students have limited mentorship from gerontological faculty in their own program, the PDFP offers a bridge to gerontological scholars and peer support across the US. Beyond that, opportunities are readily available for participation with the Association for Gerontology Education in Social Work (AGESW) and for collaboration across this network. Like myself, many awardees move into faculty positions and their accomplishments are varied and impressive. It is difficult to fully separate these from the connections, mentorship, and support received from the AGESW network and through participation in this program.

Transforming Students' Attitudes and Anxieties Toward Death and Loss: The Role of Prior Death Experiences.

This study examines the impact of a death and dying course on 39 undergraduate students' attitudes and anxieties about death. Authors outline key aspects of the curriculum used in the course and discuss how the approach lends itself to a transformative learning experience related to death and loss, preparing students who will face clients with a variety of needs in these areas across practice settings. The majority of students ( n = 34) experienced a decrease in death avoidance, fear of death, and overall death anxiety. Students with a history of multiple violent, traumatic, or unexpected deaths ( n = 5) did not experience any significant changes but demonstrated increased scores of death anxiety suggesting that they may be in need of greater support while engaging in death education.

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.