Hospice Interdisciplinary Team Research Articles

Understanding the Behavioral Health Needs of Hospice Patients and Their Family Caregivers: Perspectives of Hospice Medical Directors.

Behavioral health disorders are common among patients and caregivers in the hospice setting. Yet, limited data exist regarding what hospice providers perceive as the most common and challenging behavioral health disorders they encounter and how they manage these issues in practice. To characterize the perspectives of hospice medical directors (HMDs) on addressing the behavioral health challenges when caring for patients enrolled in home hospice care and their family caregivers. Semistructured interviews with seventeen certified HMDs were conducted. Data were analyzed using thematic analysis. Many HMDs agreed that delivering high-quality behavioral health care is a tenet for good end-of-life (EoL) care. HMDs shared that depression and anxiety were the most common behavioral health challenges they encountered, while among caregivers, substance use disorder was the most challenging. Participants mentioned that nurses and social workers played a vital role in detecting and managing behavioral health problems. HMDs also stated that providing additional training for frontline staff and incorporating behavioral health experts are potential solutions to help address current challenges. HMDs emphasized the importance of addressing behavioral health challenges among patients and caregivers to provide effective end-of-life care. Future studies should examine the viewpoints of additional key stakeholder groups (e.g., hospice interdisciplinary team members, family caregivers) and confirm them in quantitative studies. Designing and implementing evidence-based assessments and interventions to improve behavioral health care by addressing anxiety, depression, and caregiver substance use disorders is essential to improving care and care outcomes in the hospice setting.

A Tunneled Catheter Placement Program for Community Hospices

ContextThe symptoms associated with the excessive fluid accumulation of ascites or pleural effusions can be intractable to medical management and can have a significant negative impact on quality of life of hospice patients. Hospice of the Valley, a community-based, nonprofit hospice agency has historically referred patients to outpatient providers for paracentesis, thoracentesis, and placement of tunneled drainage catheters. ObjectivesTo describe an in-house pilot program of tunneled catheter placement to provide immediate and longer-term symptom relief for selected hospice patients. MethodsThe logistics and cost of the pilot program are described. Key data elements, including select demographics, patient eligibility screening, and incidence of procedure-related or late complications are reported. ResultsA total of 135 drainage procedures completed on 127 unique hospice patients over 27 months (2020–2023) were reviewed. The rate of procedure-related complications (<4%) and late complications (<3%) are low. The average cost per procedure ($1030) compares favorably with outpatient providers’ fees. The program was well-accepted by the interdisciplinary hospice team, patients, and families. ConclusionsAn in-house program of tunneled catheter placement is a feasible option for hospice providers with low-cost exposure and high potential for improved quality of life and symptom relief for selected patients.

Choosing Hospice is Not Giving Up

Choosing Hospice is Not Giving Up

A Seat at the Table for Music Therapy: Perceptions of Music Therapy Within the Hospice Interdisciplinary Team

Abstract Music therapy is a newer profession within hospice, with limited evidence of other disciplines’ perceptions of a music therapist’s role in hospice care. The purpose of this study was to examine if perception differences exist between music therapists and interdisciplinary team (IDT) members regarding how 25 job tasks related to the music therapist’s role within a clinical interdisciplinary hospice team. Two groups consisting of board-certified music therapists (MT-BC) and IDT members completed an online Qualtrics survey to rate how 25 job tasks were perceived to pertain to the music therapist’s role in hospice care. A two-way mixed ANOVA indicated the significant differences between the 2 groups for 13 of the 25 tasks, suggesting less understanding of an MT-BC’s role within a hospice IDT. For the 13 tasks perceived significantly different, a one-way ANOVA was run and indicated significant between discipline perceptual differences for nine of the 13 tasks. Qualitative statements indicated contracted and employed MT-BCs experienced similar perceived barriers of IDT colleagues lack of understanding music therapy and the MT-BC not being able to attend IDT or participate regularly. Overall, required IDT groups’ qualitative statements were positive, with the most common responses across disciplines indicating that MT-BCs elicited positive responses from patients and caregivers, provided a distraction from pain or agitation, and increased patients’ quality of life. The current study’s outcomes highlight the need for music therapists to provide more education to colleagues regarding a music therapist’s role in the hospice setting.

Core Roles and Responsibilities of Physicians in Hospice Care: A Statement by and for U.S. Hospice and Palliative Care Physicians.

Physicians are integral members of hospice interdisciplinary teams (IDTs). This statement delineates the core roles and responsibilities of hospice medical directors (HMDs) and hospice physicians who are designated by the hospice program to fulfill core HMD responsibilities. In addition, we describe the basic elements of hospice programs' structure and function required for hospice physicians to fulfill their roles and responsibilities. Finally, we call attention to hospice program characteristics and circumstances of the work environment that should raise a hospice physician's concerns that hospice patients and families are at risk of receiving low-quality care. Such factors include lack of a functioning IDT, minimal physician involvement in direct patient care and clinical IDT meetings, inadequate responses to symptom emergencies in patients' homes, and no or limited access to general inpatient and continuous home hospice care. We write as individual physicians who are concerned about troubling variability in access to and quality of U.S. hospice care. This statement arises from the need to protect the safety and well-being of vulnerable seriously ill people with their families from low-quality hospice care. This statement is primarily intended to be a resource to hospice physicians in negotiating employment agreements and justifying staffing and programmatic resources necessary to perform their jobs well. This statement may also serve as a resource and reference for patient advocacy groups, hospice industry leaders, health services oversight organizations, accountability agencies, and legislatures in efforts to ensure the safety, quality, and reliability of hospice care in the United States.

ALIGNMENT OF COMMUNICATION AND SUPPORT NEEDS BETWEEN LGBTQ+ FAMILY CAREGIVERS OF HOSPICE PATIENTS AND PROVIDERS

Abstract Effective and equitable end-of-life care requires alignment between the support and communication needs of hospice family caregivers and the knowledge and competence of hospice care team members. We investigate alignment between LGBTQ+ caregivers and hospice providers in a secondary analysis of data collected in three studies: 1) Surveys identifying predictors of hospice providers’ (N=122) attitudes toward LGBTQ+ caregivers and patients; 2) focus groups assessing hospice interdisciplinary care team members’ (N=48) knowledge, training, and opinions regarding LGBTQ+ family caregiver and patient communication and care needs; and 3) in-depth interviews with LGBTQ+ hospice family caregivers (N=20). Synthesis of key findings show how alignment is impacted by lack of systematic, inclusive orientation and gender data, provider religiosity, expectations of disclosure, cisheteronormative assumptions about the universality of EOL experiences, and caregivers’ experiences of minority stress. We discuss implications for developing interventions to improve provider communication, empowering caregivers, and addressing hospice-specific sources of minority stress.

INTERDISCIPLINARY DEMENTIA CARE WORKFORCE TRAINING DURING COVID-19 AND TWO HOSPICE CASE STUDIES

Abstract Hospice is a care model characterized by interdisciplinary team-based, person and family-centered care. To optimize agency-wide interdisciplinary team-based hospice dementia care, at least two levels of tailoring of the dementia care workforce training are imperative, first, by discipline, and second, by hospices’ local culture and needs. As of February 2022, a thousand and one skilled hospice interdisciplinary team members (not counting champions) across 18 hospice agencies have completed their discipline-specific Aliviado dementia care training, including 56 providers, 763 nurses, 129 social workers, and 53 chaplains. In this presentation, we describe how we tailored dementia workforce training for skilled interdisciplinary team members (first level tailoring), as well as provide two case studies elucidating how we performed further tailoring of the program for two large hospice agencies (average daily census: 354 and 868, respectively) in two different states to meet their local needs (second level tailoring), and lessons learned.

Family Members' Perceptions of Caregiver-Centered Communication with Hospice Interdisciplinary Teams: Relationship to Caregiver Wellbeing.

Investigators sought to determine how family caregivers' psychological and physical wellbeing influenced their perceptions of communication with hospice providers. Researchers conducted a secondary analysis of quantitative data generated during two multisite randomized clinical trials of supportive interventions for hospice family caregivers. Caregivers' (N = 525) self-reported anxious symptoms, depressive symptoms, physical quality of life, and perceptions of communication with hospice providers were analyzed via a series of linear models that included demographic and contextual controls. Caregivers' anxious symptoms, depressive symptoms, and physical quality of life were largely unrelated to caregivers' perceptions of their communication with hospice providers when adjusted for demographic and contextual factors. Variation in caregivers' perceptions of their communication with hospice providers was not well explained by caregiver wellbeing. Additional research is needed to understand if and how caregivers' perceptions of communication with hospice providers are related to factors not included in this secondary analysis. Provider-related variables may be particularly important to consider.

Providing home hospice care for LGBTQ+ patients and caregivers: Perceptions and opinions of hospice interdisciplinary care team providers.

Hospice patients and caregivers who are members of sexual and gender minority groups (i.e., LGBTQ+) have reported experiencing unmet needs at end of life (EOL). Negative experiences often stem from challenging interactions with healthcare providers due to ineffective or poor communication and providers' heteronormative assumptions and biases. Few studies, however, examine hospice care team (HCT) providers' knowledge, experience, and opinions related to EOL care for LGBTQ+ patients and caregivers despite this being identified as a gap in competency and education. We sought to examine HCT providers' perceptions regarding (1) awareness of LGBTQ+ patients and caregivers; (2) knowledge of specific or unique needs; and (3) opinions on best care and communication practices. Six focus groups conducted with HCT providers (n = 48) currently delivering hospice care in three US states were audio-recorded and transcribed. Data were content coded (κ = 0.77), aggregated by topical categories, and descriptively summarized. Participants were mostly white and non-Hispanic (n = 43, 89.6%), cisgender female (n = 42, 87.5%), heterosexual (n = 35, 72.9%), and religious (n = 33, 68.8%); they averaged 49 years of age (range 26-72, SD = 11.66). Awareness of LGBTQ+ patients and caregivers depended on patient or caregiver self-disclosure and contextual cues; orientation and gender identity data were not routinely collected. Many viewed being LGBTQ+ as private, irrelevant to care, and not a basis for people having specific or unique EOL needs because they saw EOL processes as universal, and believed that they treat everyone equally. Providers were more comfortable with patients of lesbian or gay orientation and reported less comfort and limited experience caring for transgender and gender-diverse patients or caregivers. Many HCT members were unaware of specific issues impacting the EOL experiences of LGBTQ+ patients and caregivers, or how these experiences may inform important care and communication needs at EOL.

Examining Shared Decision Making in Hospice Interdisciplinary Team Meetings (RP302)

Examining Shared Decision Making in Hospice Interdisciplinary Team Meetings (RP302)

Potential sources of moral distress during COVID-19: Perspectives of hospice interdisciplinary teams.

This study aimed to examine the impact of COVID-19 on hospice Interdisciplinary team (IDT) members' self-reported stress and identify possible sources of moral distress. A cross-sectional survey was conducted using Qualtrics to understand the impact of COVID-19 on quality improvement initiative implementation and hospice IDT members' general and dementia-specific care provision. Directed qualitative content analysis was used to analyze hospice IDT members' responses from five open-ended survey questions that were indicative of stress and possible moral distress. The final sample consisted of 101 unique respondents and 175 comments analyzed. Three categories related to sources of moral distress based on hospice IDT member survey responses were identified: (1) impact of telehealth, personal protective equipment (PPE), and visit restrictions on relationships; (2) lack of COVID-19-specific skills; and (3) organizational climate. Sources of moral distress were categorized in 40% of all responses analyzed. This study is one of the first to document and confirm evidence of potential stress and moral distress amongst hospice IDT members during COVID-19. It is imperative given the possible negative impact on patient care and clinician well-being, that future research and interventions incorporate mechanisms to support clinicians' emotional and ethical attunement and support organizations to actively engage in practices that address clinician moral distress resulting from restrictive environments, such as the one necessitated by COVID-19.

We Are Not Heroes; Elevating the Discourse of Burnout in Hospice and Palliative Care Nurses (HPCNs) in the Pre/Post COVID Era: A Scoping Review (S504)

Outcomes1. Describe results from a scoping review related to personal factors, organizational and workplace factors, and nursing professional development factors related to hospice and palliative care nurses2. Recognize characteristics of hospice and palliative care nurses (HPCNs) that are associated with burnout and strategies to mitigate burnoutBackground and ObjectiveBurnout among HPCNs has been rising throughout the COVID-19 pandemic and threatens patient safety and quality of care. The extant literature provides insight into burnout within the interdisciplinary hospice and palliative care team, but little attention has been given among HPCNs specifically. We conducted a scoping review to examine burnout among HPCNs and unify disparate findings.Study IdentificationUsing the Arksey and O'Malley framework, we systematically searched 8 major databases from 2015 to 2020. Studies were included if they focused on HPCN experiences of burnout, were published in English within the last 5 years with the exception of seminal works, and were discoverable in electronic databases. Exclusion factors included articles that were not focused solely on hospice and palliative nursing, specifically focused on burnout (ie, depression, compassion fatigue, workplace environment), or research articles.Data Extraction and SynthesisTwo authors extracted data from the full-text inclusion studies. Results were presented in tabular summary and descriptive summary of quantitative findings.ResultsAmong 1,893 studies, 8 met inclusion criteria. All studies were quantitative, classified as level IV within the rating system for hierarchy of evidence for literature, and spanned across 6 countries. HPCNs working across settings such as inpatient, outpatient, community, and inpatient hospice were represented. Results of studies were coalesced into 3 overarching categories: personal factors, organizational or workplace factors, and nursing professional development factors. Each of these categories was then divided into three cross-cutting subcategories: contributory and noncontributory factors, mitigating factors, and workplace issues.Conclusions and Implications for Practice, Policy, and ResearchBurnout among HPCNs may not be entirely preventable, but the recognition of contributory and mitigating factors should be taken into consideration by professional nurses and organizations. Additional research is needed to test workplace interventions suggested in the literature, including whether resilience or self-care measures affect burnout in HPCNs. Qualitative research is needed to capture HPCN experiences of burnout, especially in a post-COVID-19 era.

The Lived Experience of Physical Separation for Hospice Patients and Families amid COVID-19

ContextMany hospice patients were physically separated from family members and healthcare professionals during the early COVID-19 pandemic. ObjectivesResearchers sought to describe the lived experience of physical separation for hospice patients and family caregivers who adhered to public health guidelines intended to limit the transmission of COVID-19 in the spring of 2020. MethodsResearchers performed a secondary analysis of qualitative data collected during a multi-site clinical trial of an intervention that incorporated family caregivers into care plan reviews during biweekly hospice interdisciplinary team meetings. Twenty-eight adult family caregivers of hospice patients with cancer participated in at least one care plan review between March 7, 2020 and June 10, 2020. The final analytic dataset included the transcribed content of 60 care plan reviews, which were analyzed via reflexive thematic analysis. ResultsHospice patients and their family caregivers experienced physical separation as interrupted care that resulted in the potential for unmet informational, functional, and social and emotional needs. Connection strategies employed to adapt to care interruptions and address patient and caregiver needs were not consistently effective. ConclusionInclusive, innovative connection strategies are needed to ensure that high-quality end-of-life care is provided to hospice patients and their family caregivers when physical presence must be limited.

A Pilot Observational Exploratory Study of Well-Being in Hospice Interdisciplinary Team Members.

Well-being and turnover intent represent key aspects to the promotion of a healthy workforce. Alarming levels of burnout and low levels of well-being have been documented in health professionals across care settings. Not only do high levels of burnout, low well-being and high turnover affect health professionals, but they are associated with poor patient care. However, limited research has investigated this topic specifically in hospice interdisciplinary team (IDT) members, nurses, chaplains, social workers. Thus, the purpose of this study was to explore hospice IDT members' well-being, and turnover intent. This observational, pilot study used quantitative surveys to examine the well-being, and turnover intention at baseline and at 3 months. Twenty-five hospice IDT members at one site participated. Paired t-tests and percent change demonstrated significant decreases in compassion satisfaction (44.5 vs. 42.1, p = 0.04) and secondary traumatic stress score (18.5 vs. 13.3, p = 0.0001) and a significant increase in burnout score (17.6 vs. 20.5, p = 0.03) from baseline to follow up. Employee turnover slightly decreased from baseline to follow-up. In this pilot study, hospice IDT members had low levels of well-being at baseline that worsened over 3-months indicating a higher potential risk for burnout. Moreover, given the COVID-19 pandemic, this may be an ominous sign of what lies ahead for hospice providers regarding turnover, leading to significant long-term staffing problems in the field. If these results hold true in a larger sample, it could necessitate developing and testing further strategies to ensure a healthy and stable workforce.

Receipt of Hospice Aide Visits Among Medicare Beneficiaries Receiving Home Hospice Care

ContextHospice aides provide essential direct care to hospice patients, yet there is minimal research examining hospice aide visits. Objectivesdescribe the prevalence and frequency of hospice aide visits, and 2) evaluate patient, community, and hospice characteristics associated with these visits. MethodsLongitudinal cohort study of Medicare Current Beneficiary Survey (MCBS) participants who died between 2010-2018 and received routine hospice care in the 6 months prior to death (n = 674). We characterized prevalence and frequency of hospice aide visits over time and used generalized linear modelling to identify factors associated with visits. Results64% of hospice enrollees received hospice aide visits and average visit frequency (1.3 per week) remained stable throughout enrollment. The only patient characteristic associated with receipt of hospice aide visits was primary hospice diagnosis (respiratory diagnosis vs. dementia: OR 0.372, P = 0.040). Those living in community-based residential housing and those cared for by hospices with aides employed as staff were more likely to receive any hospice aide visits (OR 2.331, P = 0.047 and OR 4.612, P = 0.002, respectively.) ConclusionHospice aide visits are a common component of hospice care, but visit frequency does not increase as death approaches. Receipt of hospice aide visits was primarily associated with community and hospice agency (rather than patient) characteristics. Future work is needed to ensure that hospice aides are integrated in the hospice interdisciplinary team and that access to hospice aide visits is meaningfully driven by patient and family needs, rather than the practice norms and business models of individual hospice agencies.

Caregiver Challenges Seen From the Perspective of Certified Home Hospice Medical Directors.

Background: Hospice medical directors (HMDs) play an important role as part of the interdisciplinary hospice team. Family caregivers (CGs) play a critical role in caring for patients receiving home hospice care. Understanding the challenges HMDs face when working with CGs is important when addressing potential gaps in care and providing quality end of life (EoL) care for the patient/CG dyad. Objectives: To understand issues HMDs encounter when working with and caring for CGs and to determine how they manage these issues in the home hospice setting. Design: Twelve semistructured phone interviews with certified HMDs were conducted. Data were analyzed using standard qualitative methods. Subjects: Participants included certified HMDs obtained from a public website. Results: Participants' responses regarding the major issues HMDs faced when working with CGs were categorized into 6 themes: (1) assessing CG competency, (2) CG financial burden, (3) physical burden of caregiving, (4) managing CG expectations, (5) CGs denial of patient's terminal condition, and (6) CGs unwilling or unable to engage with providers about their needs or the patient's needs. Conclusions: HMDs confirmed the important role CGs play in providing care to home hospice patients. Challenges faced by HMDs vary from assessing CG competency in providing care to the patient, dealing with the physical and financial toll that CGs face, and addressing CGs' expectations of hospice care. Future studies are needed to explore solutions to these issues to better support CGs in the home setting.

Mixed methods analysis of hospice staff perceptions and shared decision making practices in hospice.

Shared decision making has been a long-standing practice in oncology and, despite a lack of research on the subject, is a central part of the philosophical foundation of hospice. This mixed methods study examined the perceptions of staff regarding shared decision making and their use of shared decision elements in hospice interdisciplinary team meetings. The revised Leeds Attitude to Concordance scale (LatConII) was used to measure the attitudes of hospice staff toward shared decision making. Field notes and transcripts of hospice interdisciplinary team meetings that included family caregivers as participants were coded to identify 9 theory-driven shared decision making elements. The results were mixed in a matrix analysis comparing attitudes with practice. Three transcripts demonstrate the variance in the shared decision making process between hospice teams. Hospice staff reported overall positive views on shared decision making; however, these views differed depending on participants' age and position. The extent to which staff views were aligned with the observed use of shared decision making elements in hospice interdisciplinary team meetings varied. Policy and practice conditions can make shared decision making challenging during hospice interdisciplinary team meetings despite support for the process by staff. This study is a sub-study of a parent study registered with clinicaltrials.gov (NCT02929108).

Deprescribing in Hospice Patients: Discontinuing Aspirin, Multivitamins, and Statins

ObjectiveTo facilitate deprescribing of aspirin, multivitamins, and statins in hospice patients enrolled in Mayo Clinic Hospice, Rochester, Minnesota.Patients and MethodsDuring the fall of 2019, we conducted a quality improvement project to improve care of Mayo Clinic Hospice patients by decreasing the percentage of patients taking aspirin, multivitamins, or statins. Project interventions included the addition of a palliative medicine fellow to the hospice interdisciplinary team, nurse education, and implementation of an evidence-based deprescribing resource tool. The resource tool included a communication framework to guide deprescribing conversations and a literature summary supporting deprescribing. The project team recorded the number of patients taking 1 of these medications by intermittently surveying the hospice census. Process and counterbalance measures were tracked with online surveys of hospice nursing staff.ResultsAt the start of the project, 22 of 69 patients (32%) were taking aspirin, a multivitamin, or a statin. After introduction of the deprescribing resource tool and the addition of a palliative medicine fellow to the interdisciplinary team, this was reduced to 20 of 83 patients (24%), a 24% decrease. Results appeared to be driven primarily by a reduction in multivitamin use (33% decrease). Self-reported comfort and knowledge about deprescribing improved among the hospice nursing staff, as did satisfaction in their workflow from 5.4 to 6.0 (maximum, 7).ConclusionThe addition of a dedicated team member to address medication issues and provision of an evidence-based deprescribing resource tool appear to reduce the use of unnecessary and potentially harmful medications in ambulatory hospice patients.

Pharmacists find purpose in end-of-life care

Pharmacists find purpose in end-of-life care

Quality Improvement Project to Enhance Knowledge of Hospice Interdisciplinary Team of Post-Acute Care Services

Quality Improvement Project to Enhance Knowledge of Hospice Interdisciplinary Team of Post-Acute Care Services