Hospice Clinicians Research Articles

Clinician Communication in Hospice: Constructions of Reality Throughout the End-of-Life Process.

The current study examined qualitative data from hospice clinicians' perspectives on language, surrounding end-of-life (EOL), to understand challenges and opportunities for constructing a trajectory of communication leading towards a good death experience. Findings from two focus groups with nine clinicians' and 12 individual interviews, four of which were follow up interviews after the focus groups, were guided by framework analysis and revealed three themes, constructing language choices, roles and responsibilities, and socio-cultural considerations. We used the Opportunity Model for Presence during the End-of-Life Process (OMP-EOLP) to make sense of the findings and discuss implications for language use throughout the EOL process. We argue additional efforts should be made in recognizing the value of presence checks, re-constructing advance care planning, and utilizing different forms of media as an educational tool and connection mechanism for clinicians with patients and families to achieve a timely engagement of EOL conversations for all healthcare participants.

"It's You": Caregiver and Clinician Perspectives on Lucidity in People Living With Dementia.

Episodes of lucidity (ELs), or a transient return of abilities believed to be lost in people living with dementia, are a growing area of interest. These events hold important implications for care, caregiving, and our understanding of underlying etiologies. Research on ELs is largely limited to retrospective reports. The perspectives of professional and family caregivers on ELs and research approaches can inform efforts to define and study lucidity. The present study examined family caregiver and hospice clinician experiences with and perspectives on ELs in people living with dementia and observational approaches to studying these events. This exploratory, descriptive qualitative study employed semistructured interviews (N = 20 caregivers, N = 6 clinicians). Data were analyzed using Rapid Identification of Themes and subsequent duplicate review of interview data to enhance trustworthiness. Most participants readily recalled events they perceived as ELs, describing a transient return of abilities they felt was significant and/or meaningful. Defining features, interpretations, and the perceived impact of ELs varied, although ELs were commonly conceptualized as a manifestation of self. Caregivers described extensive efforts to detect patterns and supportive social conditions for ELs. Participants supported use of audiovisual observation to study ELs and provided recommendations for privacy, workflow, and caregiver engagement. Interpretations of ELs are heterogeneous, and recognition of these events may necessitate close familiarity with the person living with dementia. Participants endorse observational approaches and integration of caregivers in this research.

Review: Narrative Medicine in Hospice Care: Identity, Practice, and Ethics through the Lens of Paul Ricoeur, by Tara Flanagan

Review: <i>Narrative Medicine in Hospice Care: Identity, Practice, and Ethics through the Lens of Paul Ricoeur</i>, by Tara Flanagan

Top Ten Tips Palliative Care Clinicians Should Know About Spirituality in Serious Illness.

Assessment of spiritual suffering and provision of spiritual care are a central component of palliative care (PC). Unfortunately, many PC clinicians, like most medical providers, have received limited or superficial training in spirituality and spiritual distress. This article, written by a group of spiritual care providers, and other PC and hospice clinicians, offers a more in-depth look at religion and spirituality to help to enhance readers' current skills while offering a practical roadmap for screening for spiritual distress and an overview of partnering with colleagues to ensure patients receive values-aligned spiritual care provision.

COVID-19 infection rates early in the pandemic among full time clinicians in a home health care and hospice organization

BackgroundPatient-facing health care workers (HCW) experience higher rates of COVID-19 infection, particularly at the start of the COVID-19 pandemic. However, rates of COVID-19 among front-line home health and hospice clinicians are relatively unknown.MethodsVisit data from a home health care and hospice agency in New Jersey early in the pandemic was analyzed to examine COVID-19 infection rates separately for clinicians exposed to COVID-19-contagious patients, and those without exposure to known COVID-19 contagious patients.ResultsBetween March 5 and May 31, 2020, among home health clinicians providing in-person care, clinicians treating at least one COVID-19 contagious patient had a case rate of 0.8% compared to 15.7% for clinicians with no exposure to known COVID-19 contagious patients. Among hospice clinicians providing in-person care, those who treated at least one COVID-19 contagious patient had a case rate of 6.5%, compared to 12.9% for clinicians with no known exposure to COVID-19 contagious patients. Non-White clinicians had a higher COVID-19 case rate than White clinicians (10.9% vs 6.2%).DiscussionLower rates of COVID-19 infection among clinicians providing care to COVID-19-contagious patients may result from greater attentiveness to infection control protocols and greater precautions in clinicians’ personal lives. Greater exposure to COVID-19-contagious patients prior to patient diagnosis (“unknown exposures”) may explain differences in infection rates between home health and hospice clinicians with workplace exposures.ConclusionClinicians providing in-person care to COVID-19-contagious patients experience lower rates of COVID-19 infection than clinicians providing face-to-face care with no known exposure to COVID-19 contagious patients. Our findings suggest there was a low incidence of potential workplace infections.

Poster Abstracts From the 14th Annual Hospice and Palliative Nurses Association Clinical Practice Forum 2020.

The Hospice and Palliative Nurses Association's 14th Annual Clinical Practice Forum was designed by hospice and palliative nurses for the hospice and palliative nursing community to support a collaborative educational offering focusing on how nurses lead and transform care for individuals and their families who are facing serious illness. The 2020 abstracts presented here assist in advancing our conference aim and reflect the latest scientific research, quality improvement projects and works in progress from hospice and palliative clinicians. These abstracts are intended to provide learners with a framework to improve patient outcomes through the dissemination of evidence-based palliative research and clinical innovations for potential application into individual practice settings.

Treating Substance Use Disorder and Addressing Opioid Misuse: A National Survey of Hospice Clinicians (SCI915)

Treating Substance Use Disorder and Addressing Opioid Misuse: A National Survey of Hospice Clinicians (SCI915)

Time to Deprescribe: A Time-Centric Model for Deprescribing at End of Life.

In end-of-life care, deprescribing practices may vary considerably from one practitioner to the next, although most published frameworks for evaluating medication appropriateness in advanced illness consider three key principles (1) patient and caregiver goals, (2) remaining life expectancy (LE), and (3) medication time to benefit (TTB). The objective of this article is to provide clinicians with a structured, consistent approach for deprescribing that does not replace clinical judgment or the preferences of patients and their families but enhances it through clinical data. The emphasis will be on the time component of published models, including how to estimate remaining LE and medication TTB. Through case examples of two new hospice admissions, LE and TTB will be estimated and applied to deprescribing decisions. This time-centric approach may satisfy the palliative and hospice clinicians' desire for clear clinical justification for medication discontinuation while at the same time providing a strategy for communicating deprescribing rationale to patients and families.

PC-FACS

PC-FACS (FastArticleCriticalSummaries forClinicians inPalliativeCare) provides hospice and palliative care clinicians with concise summaries of the most important findings from more than 100 medical and scientific journals. If you have colleagues who would benefit from receiving PC-FACS, please encourage them to join the AAHPM at aahpm.org. Comments from readers are welcomed at pcfacs@aahpm.org.

Perceived Benefits and Burdens of Participation for Caregivers of Cancer Patients in Hospice Clinical Trials: A Pilot Study

ContextHospice is a service for those with a life expectancy of six months or less. Family caregivers suffer from depression and anxiety as they care for their loved one until they die. Little is known about how research participants decide to consent to participate in clinical trials in the hospice setting. ObjectivesThis pilot study sought to answer two research questions: 1) In what way do demographic characteristics, mental health, and perceived caregiving experience impact the decision by caregivers to participate in hospice clinical trials? 2) In what ways do the perceived physical, psychological, economic, familial, and social dimensions of caregivers' lives influence their decision to participate in hospice clinical trials? MethodsThe characteristics and stated reasons for consent of hospice caregivers participating in a clinical trial were compared with individuals who refused clinical trial consent and only consented to this pilot study. Demographic, mental health, and perceptions of caregiving experience were measured as influencers to the consent decision. Recruitment calls were recorded and coded using framework analysis to identify perceived benefits and burdens impacting the decision to consent to the clinical trial. ResultsOverall, trial participants were more often adult children to the patient (55% vs. 21%, P = 0.005), younger (56 vs. 63 years, P = 0.04), and employed (47% vs. 24%, P = 0.02) as compared with those who did not consent to participate in the trial. Reported levels of depression, anxiety, and quality of life were not significantly different between those who chose to participate in the clinical trial and those who participated only in this pilot study; however, caregiver burden was higher for those consenting to the clinical trial (4.05 vs. 7.16, P < 0.0001). Perceived benefits expressed by both groups were largely psychological as participants felt positive about contributing to science. Burdens expressed by both groups were predominately physical as they related to hesitation to participate in the intervention because of technology or the burdens of caregiving. ConclusionThe benefits and burdens model for clinical trial participation is applicable to the caregiver experience in the hospice setting. Understanding the perceptions and dimensions of benefits and burdens to potential study participants is critical to not only the intervention design but also the tailoring of recruitment contacts and informed consent process.

Associations Between Hospice Care and Scary Family Caregiver Experiences

ContextHospice deaths in the U.S. are increasing. Dying hospice patients may have rapidly emerging needs the hospice team cannot immediately meet, exposing family caregivers to fright-inducing (i.e., scary) situations. ObjectivesTo examine relationships between hospice care and family caregiver exposures and psychological responses to witnessing common and distressing patient symptoms near the end of life. MethodsSecondary analysis of prospective cohort study of 169 patients with advanced cancer and their family caregivers was analyzed. Multivariable regression analyses modeled associations between hospice use and caregiver exposures and psychological responses (fear and helplessness) to witnessing distressing symptoms common near death, adjusting for potential confounding influences (e.g., home death, patient characteristics, and suffering). Caregiver self-reported exposures and responses to observing patient symptoms during the last month of life were assessed using the validated Stressful Caregiving Response to Experiences of Dying (SCARED) scale. ResultsHospice care was significantly positively associated with more exposures and negative psychological responses to distressing patient symptoms, adjusting for home death, patient characteristics, and physical and mental suffering. On average, hospice patients' caregivers scored 1.6 points higher on the SCARED exposure scale and 6.2 points higher on the SCARED psychological response scale than caregivers of patients without hospice (exposure: 10.53 vs. 8.96; psychological responses: 29.85 vs. 23.67). Patient pain/discomfort, delirium, and difficulty swallowing/choking were reported by three-fourths of caregivers and associated with the most fear and helplessness among caregivers. ConclusionHospice care is associated with more exposures to and caregiver fear and helplessness in response to scary patient experiences. Research is needed to understand how better to support family caregivers of hospice patients to enable them to cope with common distressing symptoms of dying cancer patients. Hospice clinicians providing additional education and training about these symptoms might enable caregivers to better care for dying loved ones and reduce the stresses of end-of-life caregiving.

Top Ten Tips Palliative Care Clinicians Should Know About Bereavement and Grief.

Palliative care (PC) focuses on caring for the whole person, from birth to death, while managing symptoms and helping to navigate medical complexities. Care does not stop at the time of death, however, as assisting patients, families, and fellow clinicians through grief and bereavement is within PC's purview. Unfortunately, many clinicians feel unprepared to deal with these topics. In this article, PC and hospice clinicians define and explain bereavement, distinguish normative grief from pathological grief, offer psychometrically sound scales to screen and follow those suffering from grief, and discuss the interaction between grief and bereavement and the physical and mental health of those who are left behind after the death of a loved one.

A Stakeholder-Engaged Process for Refining the Design of a Hospice Clinical Trial (CS203B)

A Stakeholder-Engaged Process for Refining the Design of a Hospice Clinical Trial (CS203B)

The Development and Implementation of a Cardiac Home Hospice Program: Results of a RE-AIM Analysis.

Use of hospice has grown among patients with heart failure; however, gaps remain in the ability of agencies to tailor services to meet their needs. This study describes the implementation of a cardiac home hospice program and insights for dissemination to other hospice programs. We conducted a multimethod analysis structured around the Reach Effectiveness Adoption Implementation and Maintenance (RE-AIM) framework. We used electronic medical records for our quantitative data source and interviews with hospice clinicians from a not-for-profit hospice agency (N = 32) for our qualitative data source. Reach-A total of 1273 participants were enrolled in the cardiac home hospice program, of which 57% were female and 42% were black or Hispanic with a mean age was 86 years. Effectiveness-The cardiac home hospice program increased hospice enrollment among patients with heart failure from 7.9% to 9.5% over 1 year (2016-2017). Adoption-Institutional factors that supported the program included the acute need to support medically complex patients at the end of life and an engaged clinical champion. Implementation-Program implementation was supported by interdisciplinary teams who engaged in care coordination. Maintenance-The program has been maintained for over 3 years. The cardiac home hospice program strengthened hospice clinicians' ability to confidently provide care for patients with heart failure, expanded awareness of their symptoms among clinicians, and was associated with increased enrollment of patients with heart failure over the study period. This RE-AIM evaluation provides lessons learned and strategies for future adoption, implementation, and maintenance of a cardiac home hospice program.

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.

Hospice Staff Perspectives on Caring for People with Dementia: A Multisite, Multistakeholder Study.

Background: In the United States, 45% of people enrolled in hospice have dementia. We know little about how hospice professionals facilitate preference-aligned end-of-life care for people with dementia (PWD) and their families. Objective: To examine hospice stakeholders' perspectives on caring for PWD and their families. Design: Multisite qualitative study using semi-structured interviews with interdisciplinary hospice clinicians, leaders, and administrators. The interdisciplinary team used the constant comparative method to identify, code, and characterize relevant themes. Setting/participants: Four geographically distinct nonprofit U.S. hospice organizations. Fifty-one hospice employees: 61% clinical staff, 25% executive leaders, and 14% administrators. Measurements: Interview domains included participants' practices of engaging patients/families in discussions of preferences for end-of-life care and professional opinions of changes over time. Cross-topic probes focused on delivering hospice care to PWD and their proxies/families. Results: Four themes regarding caring for PWD in hospice. (1) Dementia prevalence in hospice is increasing and some hospices are developing programs to accommodate specific needs. (2) Setting impacts discussions of preferences and care decisions. (3) Caring for PWD on hospice poses unique challenges caused by (i) perceptions that dementia is not terminal, (ii) a lack of advance care planning discussions before hospice admission, and (iii) proxy decision-makers who were inadequately prepared for their role. (4) Hospice regulatory and policy changes disproportionately impact PWD. Conclusions: Hospice professionals perceive increasing demand for, and multilevel challenges to, caring for PWD. Clinicians "upstream" from hospice may help by engaging patients and proxies in discussions of preferences for end-of-life care and providing anticipatory guidance.

The Reliability of Telemedicine for Hospice Face-to-Face Recertification Visits: A Quality Improvement Project (FR408D)

•Discuss the need for innovative technologies to support patient hospice recertification.•Examine the benefits and challenges to using teleconsultation in hospice recertification processes. The growing acceptance of hospice care, changes in reimbursement, and shortages of hospice clinicians requires hospices to find new ways to deliver high-quality and affordable care. To assess the reliability of using interactive teleconsultations for conducting face-to-face (F2F) hospice recertification visits. A quality improvement project was conducted to compare outcomes for F2F hospice recertification visits performed by an advance practice nurse or physician in-person and via teleconsultation simultaneously. Teleconsultation was achieved using HIPAA-compliant Zoom on cellular-enabled tablets. After each visit: 1) in-person clinicians completed a survey indicating their impression of the patient's hospice eligibility; 2) teleconsultation clinicians completed a survey indicating their impression of patient's hospice eligibility and a telemedicine usability questionnaire; and 3) patients or caregivers completed a telemedicine acceptability survey. Impressions of eligibility for recertification between in-person and teleconsultation providers were compared using McNemar's test for paired nominal data and exact binomial testing for outcomes with small cell values. Univariate descriptive analysis was used to summarize the usability and acceptability of the teleconsultation. An initial 21 of 200 planned visits (effect size 10% with 80% power) were completed in June-July 2019. In-person and teleconsultation clinicians agreed 100% on their impressions of the patient's hospice eligibility, indicating satisfactory agreement. Teleconsultation clinicians, patients and caregivers indicated they could hear, talk, and express themselves during the Zoom visit. Clinicians reported both benefits, tips, and challenges for using the teleconsultation system. Patients and caregivers reported they would use the teleconsultation for hospice care in the future. Preliminary results indicate telemedicine is a reliable, usable, and acceptable modality to conduct hospice F2F visits. Conducting F2F visits using innovative technologies, like mobile telemedicine, may help hospices to provide high-quality and affordable care.

Prevalence and Predictors of Burnout Among Hospice and Palliative Care Clinicians in the U.S.

ContextMany clinical disciplines report high rates of burnout, which leads to low quality of care. Palliative care clinicians routinely manage patients with significant suffering, aiming to improve quality of life. As a major role of palliative care clinicians involves educating patients and caregivers regarding identifying priorities and balancing stress, we wondered how clinician self-management of burnout matches against the emotionally exhaustive nature of the work. ObjectivesWe sought to understand the prevalence and predictors of burnout using a discipline-wide survey. MethodsWe asked American Academy of Hospice and Palliative Medicine clinician members to complete an electronic survey querying demographic factors, job responsibilities, and the Maslach Burnout Inventory. We performed univariate and multivariable regression analyses to identify predictors of high rates of burnout. ResultsWe received 1357 responses (response rate 30%). Overall, we observed a burnout rate of 38.7%, with higher rates reported by nonphysician clinicians. Most burnout stemmed from emotional exhaustion, with depersonalization comprising a minor portion. Factors associated with higher odds of burnout include nonphysician clinical roles, working in smaller organizations, working longer hours, being younger than 50 years of age, and working weekends. We did not observe different rates between palliative care clinicians and hospice clinicians. Higher rated self-management activities to mitigate burnout include participating in interpersonal relationships and taking vacations. ConclusionBurnout is a major issue facing the palliative care clinician workforce. Strategies at the discipline-wide and individual levels are needed to sustain the delivery of responsive, available, high-quality palliative care for all patients with serious illness.

Challenges in Implementing Hospice Clinical Trials: Preserving Scientific Integrity While Facing Change

Background/AimsNumerous changes can occur between the original design plans for clinical trials, the submission of funding proposals, and the implementation of the clinical trial. In the hospice setting, environmental changes can present significant obstacles, which require changes to the original plan designs, recruitment, and staffing. The purpose of the study was to share lessons and problem-solving strategies that can assist in future hospice trials. MethodsThis study uses one hospice clinical trial as an exemplar to demonstrate challenges for clinical trial research in this setting. Using preliminary data collected during the first months of a trial, the research team details the many ways their current protocol reflects changes from the originally proposed plans. Experiences are used as an exemplar to address the following questions: 1) How do research environments change between the initial submission of a funding proposal and the eventual award? 2) How can investigators maintain the integrity of the research and accommodate unexpected changes in the research environment? ResultsThe changing environment within the hospice setting required design, sampling, and recruitment changes within the first year. The decision-making process resulted in a stronger design with greater generalization. As a result of necessary protocol changes, the study results are positioned to be translational following the study conclusion. ConclusionResearchers would do well to review their protocol and statistics early in a clinical trial. They should be prepared for adjustments to accommodate market and environmental changes outside their control. Ongoing data monitoring, specifically related to recruitment, is advised.

Deactivating a Pacemaker in Home Care Hospice: Experiences of the Family Caregivers of a Terminally Ill Patient.

Although the experiences of family members who care for relatives at the end of life have been researched extensively, little is known about the needs and experiences of families caring for hospice patients with pacemakers. To better understand the experiences of family caregivers of a terminally ill patient who received hospice care at home and chose deactivation of a pacemaker. The exploratory, cross-sectional design involved semistructured, in-depth interviews. A narrative analysis focusing on form and content was chosen to analyze the data. Five bereaved caregivers from the Midwestern United States who provided care and participated in the deactivation of their family member's pacemaker. Four storylines that described, gave meaning to, and contextualized the caregivers' experiences were identified: "I am done. I am not doing it anymore"; "Whatever you decide, I'll support you"; "It is really difficult to watch, but you want to be there"; and "I will not have part of this." Caregivers struggled with lack of support, understanding, and acceptance from medical providers when their family member decided to have her pacemaker deactivated, and they believed that the hospice model of care was appropriate to support and help them in that process. This research aids in understanding the ramifications of family-provided end-of-life care to a patient whose pacemaker has been deactivated. This can help to increase hospice clinicians' knowledge regarding caregivers' experiences facing deactivation of a pacemaker, before and after the patient's death.