Hospice Providers Research Articles

Music Therapy and Nursing Cotreatment in Integrative Hospice and Palliative Care.

Integrative hospice and palliative care is a philosophy of treatment framing patients as whole persons composed of interrelated systems. The interdisciplinary treatment team is subsequently challenged to consider ethical and effective provision of holistic services that concomitantly address these systems at the end of life through cotreatment. Nurses and music therapists, as direct care professionals with consistent face-to-face contact with patients and caregivers, are well positioned to collaborate in providing holistic care. This article introduces processes of referral, assessment, and treatment that nurses and music therapists may engage in to address family support, spirituality, bereavement, and telehealth. Clinical vignettes are provided to illustrate how cotreatment may evolve and its potential benefits given diverse circumstances. As part of this framing, music therapy is positioned as a core—rather than alternative or complementary—service in hospice that satisfies the required counseling services detailed in Medicare's Conditions of Participation for hospice providers. The systematic and intentional partnering of nurses and music therapists can provide patients and caregivers access to quality comprehensive care that can cultivate healthy transitions through the dying process.

Exploring Hospice Providers’ Thoughts and Opinions on Caring for LGBTQ+ Patients and Caregivers (SCI946)

1.Identify 2-4 reasons provided by HCT providers, including those representing different roles (e.g. RNs, aides, social workers, chaplains), for their beliefs regarding best care and communication practices with LGBTQ+ patients and family caregivers.2.Analyze how HCT members' experience and assumptions may influence care and communication practices while working with LGBTQ+ patients and caregivers, including potential effects on quality of care. Little research examines hospice care team members’ (HCT) experience and opinions about serving LGBTQ+ patients and caregivers. We examined HCT members’ perceptions regarding 1) awareness of LGBTQ+ patients and caregivers; 2) particular needs of these groups; 3) best care and communication practices; and 4) need for education and training. We conducted six focus groups with HCT members (n = 48) in three U.S. states; data were audio-recorded, transcribed, and imported into NVivo (12 and R) for coding. Data segments were topically coded until acceptable intercoder reliability was achieved (κ = 0.95); data coded within topics were then aggregated and descriptively summarized. Participants were largely white (89.8%), non-Hispanic (89.6%), female (87.5%), heterosexual (79.2%), religious (68.8%), averaged 49.2 years old (range = 26-72), had ≥ 5 years of college (39.6%), had worked in their position 6.6 years (SD = 6.26, range 0.25-30), and had no hospice or palliative care training outside their employer (70.8%). Participants were less comfortable with gender diversity than lesbian or gay orientation; most reported no experience with transgender patients or caregivers. Awareness of patients’ or caregivers’ orientation came via disclosure or contextual cues as this information was not collected on intake. Most viewed this knowledge as irrelevant to care, or as something people would share if important to them. Universality of death, the “Golden Rule,” and hospice professionals treating everyone the same were provided as reasons why LGBTQ+ individuals did not have particular care or communication needs. LGBTQ+ HCT participants often countered this by citing historical discrimination and its particular impact on older adults. Many HCT members seemed unaware of issues impacting the end-of-life experience of LGBTQ+ groups.

Stress and Support in Family and Non-Family Relationships Within Hospice Cancer Survivor Social Networks (SCI954)

1.Identify 2-3 of hospice cancer caregivers’ patterns of informal social networks that contribute to stress and/or support.2.Describe and evaluate 2-3 factors associated with patterns of stress and support. Effective social support mitigates burden and distress experienced by cancer caregivers. Little research, however, investigates informal support within social networks of family caregivers of cancer home hospice patients, and how social stress may accompany this support. We assessed patterns of support and stress within the social networks identified by family caregivers of cancer home hospice patients (N=90). We analyzed secondary data from a longitudinal multi-site study. Participants completed baseline measures including demographics (age, gender, race/ethnicity, marital status, employment, relationship to patient, length of caregiving) and self-report measures on caregiving (Rewards of Caregiving Scale, Caregiver Competence Scale, and Zarit Caregiving Burden Interview), overall mental and physical health, and perceived support and stress including the Duke Social Support and Stress Scale. Participants independently rated perceived levels of support and stress for up to six family members and four non-family members. Latent class analysis identified patterns in reported relationships, stress, and support, and. We then compared between-class differences in demographics and evaluated perceived health and caregiving burden. Three types of social networks were identified: supportive (high support, low stress across family/non-family network), ambivalent maximizers (high support, high stress across family/non-family network), and family-focused ambivalent (high support, high stress across family network only). Groups differed by ethnicity, employment status, relationship to patient, and caregiving burden (p<0.05). Social support is nuanced and may coexist with stress within the relationships and networks of hospice family caregivers. A better understanding of caregivers’ social networks and the support and stress associated with those relationships can inform how hospice providers facilitate meeting caregivers’ needs within these informal networks.

Homestead together: Pediatric palliative care telehealth support for rural children with cancer during home-based end-of-life care.

Children with terminal cancer and their families describe a preference for home-based end-of-life care. Inadequate support outside of the hospital is a limiting factor in home location feasibility, particularly in rural regions lacking pediatric-trained hospice providers. The purpose of this longitudinal palliative telehealth support pilot study was to explore physical and emotional symptom burden and family impact assessments for children with terminal cancer receiving home based-hospice care. Each child received standard of care home-based hospice care from an adult-trained rural hospice team with the inclusion of telehealth pediatric palliative care visits at a scheduled minimum of every 14days. Eleven children (mean age 11.9years) received pediatric palliative telehealth visits a minimum of every 14days, with an average of 4.8 additional telehealth visits initiated by the family. Average time from enrollment to death was 21.6days (range 4-95). Children self-reported higher physical symptom prevalence than parents or hospice nurses perceived the child was experiencing at time of hospice enrollment with underrecognition of the child's emotional burden. At the time of hospice enrollment, family impact was reported by family caregivers as 46.4/100 (SD 18.7), with noted trend of improved family function while receiving home hospice care with telehealth support. All children remained at home for end-of-life care. Pediatric palliative care telehealth combined with adult-trained rural hospice providers may be utilized to support pediatric oncology patients and their family caregivers as part of longitudinal home-based hospice care.

Development of a Decision Aid for Patients and Families Considering Hospice.

Background: Hospice is underutilized. Miscommunication, decisional complexity, and misunderstanding around engaging hospice may contribute. Shared decision making (SDM), aided by patient decision aids (PtDAs), can improve knowledge and decision quality. Currently, there are no freely available hospice-specific PtDA to facilitate conversions between patients and providers about hospice care. Objective: To develop a theory-based and unbiased hospice specific PtDA. Design: Guided by the Ottawa Decision Support Framework and International Patient Decision Aid Standards, we used a theory-driven, eight-step, iterative, user-centered approach with multistakeholder input to develop a hospice-specific PtDA for anyone facing end-of-life decisions. Subjects: Feedback was obtained from a 10-member Patient Advisory Panel composed of lay patient advisors; focus groups of hospice providers, family caregivers, and patients; and the Palliative Care Research Group at University of Colorado Hospital consisting of palliative care physicians, midlevel providers, nurses, social workers, chaplains, and researchers. Results: There are many challenges in developing an unbiased hospice decision aid, including (1) balancing the provision of education (eligibility, payment) with decisional support, (2) clarifying values and incorporating emotion, (3) ideally representing the potential downsides of hospice, and (4) adequately capturing and describing care alternatives to hospice. Within this context, we developed a 12-page article and 17-minute video PtDAs. The PtDA openly acknowledges the emotional complexity of the decision and incorporates values clarification techniques to help decision makers reflect and evaluate their goals and preferences for end-of-life care. Conclusions: Hospice decision making is complex and emotional, demanding high-quality SDM aided by a formal PtDA. This work resulted in a freely available article and video PtDA for patients considering hospice. The effectiveness and implementation of these tools will be studied in future research. Clinical Trials Registration (NCT03794700 & NCT04458090).

Cost of Pediatric Concurrent Hospice Care: An Economic Analysis of Relevant Cost Components, Review of the Literature, and Case Illustration.

Background: Concurrent care enables seriously ill pediatric Medicaid and Children's Health Insurance Program (CHIP) beneficiaries to continue curative treatments along with the supportive services usually associated with hospice care. Although a few studies have examined pediatric concurrent care, none has explored the economics of this care delivery approach for medically complex children. Objective: The purpose of this study was to identify the cost components relevant for an economic analysis of pediatric concurrent hospice care and demonstrate the use of the cost components in an economic case illustration. Methods: A scoping review of the hospice cost literature was conducted to identify article focused on hospice costs that were published in the journal literature from 2000 to 2019. A preliminary economic analysis was also conducted using a cost-minimization approach with data from a large mid-Atlantic pediatric hospice provider. We compared costs between concurrent versus standard hospice care for children. Results: Fifteen hospice cost articles were identified and no article on concurrent care costs. Most articles in the scoping review focused on hospice personnel costs, followed by supplies/equipment, and other. Personnel and costs were higher for standard hospice children compared with concurrent care, whereas concurrent care children had higher supplies/equipment costs. Conclusions: Identifying cost components are critical to economic analysis of pediatric concurrent care. These findings provide preliminary evidence about the difference in costs between concurrent and standard hospice care for children.

Factors Associated With Home-Hospice Utilization.

Utilization of hospice for end-of-life care is known to be lower among racial and ethnic minority groups than among White populations when controlling for other socioeconomic factors. Certain patient, provider, and community characteristics may influence home-hospice use. We sought to identify patient, provider, and community factors associated with home-hospice use. Our final analytic sample included 1,208,700 hospice patients who received home-hospice from 2,148 Medicare-certified hospice providers in 2016. We found that an increase in the proportion of hospice patients with a primary diagnosis of dementia decreased the odds that home-hospice was provided (OR = 1.42, 95% CI = 1.36-1.48). Patients who received hospice care from a provider with a higher proportion of dually enrolled patients were less likely to receive home-hospice (OR = 1.42, 95% CI = 1.36-1.48) and hospices located in ZIP-codes with higher proportion of Hispanic resident were less likely to provide home-hospice (OR = 1.00, 95% CI = 0.99-0.99). Additional research is needed to clarify the mechanisms underlying these associations.

Trends in the Receipt of Consistent Hospice Professional Visits at the End of Life and Ratings of Hospice Care Quality

Caregivers have identified consistent visits by professional hospice staff at the end of life as positively affecting experiences of care quality. Little is known about the prevalence of such visits. Using 100% Medicare hospice claims with discharge dates in Federal Fiscal Year 2018, we identified the rates of providing skilled nurse or social worker visits to hospice beneficiaries in at least two of the last three days of life and compared these rates to percentages of caregivers indicating they would “definitely” recommend the hospice and caregivers rating the hospice a 9 or 10 on a 10-scale from CAHPS Hospice scores. Among our analytic cohort of 762,238 hospice discharges, 509,585 individuals (66.9%) were visited by a nurse or social worker in at least two of the last three days of life. Beneficiaries lacking these visits were more likely to be black (black 39.6% vs. white 32.2%; AOR 1.32 95% CI 1.29-1.34) or resided in a nursing facility (nursing facility 37.7% vs. patient’s home 32.1%, AOR 1.39 95% CI 1.36-1.40). The mean hospice-level score for achieving these visits was 64.8% (median 70.2%; IQF 53.0%-80.9%). The Pearson’s correlation coefficients between hospice-level rates of visits at the end of life and the caregiver percentages for “definitely” recommending the hospice was 0.2418 and for rating the hospice a 9 or 10 on a 10-scale was 0.2587. These findings demonstrate significant variability across hospice providers and signal a positive correlation with caregivers’ quality ratings. Future work is needed to monitor the provision of these visits.

Rates of Diagnoses Indicating Opioid Dependence After Hospice Live Discharge: A National Study

Opioids are an important tool for managing Medicare Hospice beneficiaries’ pain and symptoms. Little is known about the prevalence of opioid dependence among patients discharged alive from hospice. Using 100% Medicare hospice, acute inpatient, and Part B claims from Federal Fiscal Years (FY) 2017-2018, we identified hospice beneficiaries that were discharged alive during FY2017-2018 and associated with diagnosis codes in subsequent health care incidents indicating opioid dependence. We used a crosswalk from the Agency for Healthcare Research and Quality to determine which codes represented opioid dependence. We characterized beneficiaries and their hospice providers using information from the Medicare Enrollment Database and Provider of Services file. There were 468,204 live hospice discharges during FY2017-2018, among which 9,282 (2.0%) were associated with subsequent health care events including a diagnosis code signifying opioid dependence. Post-hospice opioid diagnoses were more frequent among beneficiaries who were younger (for ages <65 relative to 85-89; Adjusted Odds Ratio [AOR]=6.23, 95% Confidence Intervals [CI] 5.73-6.77); dual-eligible (AOR=1.40, 95% CI 1.34-1.47); and relative to cancer, diagnosed with lung (AOR=1.83, 95% CI 1.72-1.95), heart (AOR=1.23, 95% CI 1.14-1.34), or liver diseases (AOR=1.25, 95% CI 1.10-1.42). Beneficiaries with opioid incidents tended to have survived much longer after hospice (150.9 days with opioid incidents vs. 13.6 days no opioid-related incidents). The states with the highest rates of post-hospice opioid-incidents per 10,000 live discharges were Kentucky (435.2), Wyoming (386.0), Tennessee (359.3), Washington (345.6), and Idaho (342.9). Further monitoring can ensure that hospice beneficiaries receive appropriate care during and after hospice enrollment.

Experiences of LGBT Patients and Families With Hospice and Palliative Care: Perspectives of the Palliative Care Team

The lesbian, gay, bisexual, and transgender (LGBT) community experiences discrimination and stigma in accessing health care and social services – including palliative, hospice, and long-term care. Healthcare providers not recognize or address disparities in care. Providers and institutions may be uncomfortable with sexual orientation and gender identity and expression issues, and often don’t inquire about these. LGBT patients fear being open about their identities, not receiving equal or safe treatment, and having their family of choice and designated surrogates disrespected or ignored by healthcare staff. This study examines the degree to which hospice and palliative care providers report inadequate, disrespectful, or abusive care to LGBT patients and family members. A cross-sectional study using an online survey was completed by 865 providers, including social workers, physicians, nurses, and chaplains. Among respondents, 55% reported that LGB patients were more likely than non-LGB patients to experience discrimination at their institution; 24% observed discriminatory care; 65% reported that transgender patients were more likely than non-transgender patients to experience discrimination; 20% observed discrimination to transgender patients; 14% observed the spouse/partner of LGBT patients having their treatment decisions disregarded or minimized; and 13% observed the spouse/partner being treated disrespectfully. Qualitative data are presented to illustrate discomfort with LGBT patients and spouses/partners, disrespectful care, gossip and ridicule, inadequate care, and denial of care. Implications and suggestions for implementing non-discriminatory and respectful institutional and public policy, and for staff education and training to provide competent and respectiful care to this population are presented.

Geographic Variation In Medicare Per Capita Spending Narrowed From 2007 To 2017.

We examined the trends in geographic variation in Medicare per capita spending and growth from 2007 to 2017 and found that the variation narrowed during this period. The difference in Medicare price- and risk-adjusted per capita spending between hospital referral regions (HRRs) in the top decile and those in the bottom decile decreased from $3,388 in 2007 to $2,916 in 2017-a reduction of $472, or 14percent. The spending convergence occurred almost entirely between 2009 and 2014, during the early years of the Affordable Care Act (ACA). The highest-spending HRRs in 2007 had the lowest annual growth rates from 2007 to 2017, and the lowest-spending HRRs in 2007 had the highest annual growth rates. We also found that a greater supply of postacute care providers, especially hospice providers, significantly predicted lower spending growth across HRRs after the implementation of the ACA.

“Goals of Care Conversations Don't Fit in a Box”: Hospice Staff Experiences and Perceptions of Advance Care Planning Quality Measurement

ContextWith rising concerns about quality of care in hospice, federal agencies recently began mandating quality measurement in hospice, including measures of advance care planning (ACP). ObjectivesTo characterize hospice providers' experiences with ACP quality measurement and their reflections on ways to improve it. MethodsSemi-structured in-depth interviews of fifty-one hospice providers from various clinical backgrounds and organizational roles in four geographically diverse non-profit, community-based hospices in the U.S. Participants were queried about their experiences with and barriers to ACP quality measurement processes in their organization, opinions about the impacts of federally mandated quality measures, and ideas for improvement. Data were analyzed using thematic analysis with an interdisciplinary team, facilitated by ATLAS.ti and Excel. ResultsFour key findings of the ACP quality measurement experience for hospice staff included variation, barriers, attitudes, and recommendations for improvement. 1) Variation: Within and across organizations, participants applied a variety of processes to measure ACP quality, and exposure to and experiences with quality measurement varied based on organizational role. 2) Barriers: ACP quality measurement was impeded by limited resources, technological problems, and measurement challenges. 3) Attitudes: Participants' opinions of recently implemented federally mandated requirements for ACP quality measurement highlighted numerous downsides, unintended consequences, and few upsides. 4) Recommendations: improvements included personalizing ACP quality measures, elevating the importance of quality measurement, and streamlining processes. ConclusionHospice staff take ACP quality measurement seriously, but insufficient organizational resources and regulatory bureaucracy create challenges. Efforts to enhance ACP quality measure nuance and assess outcomes are needed to improve care.

Pain talk in hospice care: a conversation analysis

BackgroundA large number of the hospice patients have been reported to be with symptoms of pain. Thus, managing the patient’s pain is one aspect of hospice care provision. The delivery of pain care services could be facilitated through effective communication. However, little has been done to explore the interactional details of the delivery of pain care services in palliative care.MethodsConversation analysis is a useful method to explore the interactional details of interaction by hospice care providers and terminally ill patients. Using the method of Conversation Analysis (CA), this study aims to demonstrate how the hospice care provider employs different types of interactional practices to address the patient’s pain concerns. The data showed in this study are collected from the Alexander St website http://ctiv.alexanderstreet.com, an educational resource presenting a large collection of psycho-therapeutic videos.ResultsIn this study, an illustrative analysis is demonstrated to show the potential of conversation analysis for research on pain talk in palliative care. It has been shown that conversation analysis could contribute to unfolding the interactional details regarding “pain talk” in hospice care settings. Specifically, conversation analysis could provide a detailed description and interpretation of the conversational practices, which are used to construct hospice care provider participation in delivering pain talk. In addition, conversation analysis could also demonstrate the interactional resources by which patients disclose their experiences of physical or spiritual pain to the hospice care provider and the way how the hospice care provider responds to the patient’s troubles talk or feelings talk.ConclusionsThis study identifies five types of interactional resources which are used to deal with the patient’s pain concerns in hospice care setting. A conversation analytical study of pain talk in hospice care could provide a turn-by-turn description of how the hospice care provider communicates with the terminally ill patient in terms of the patient’s pain concerns. The findings in this study could inform how the hospice care provider initiates, delivers and develops a pain talk with the terminally ill patient effectively.

What Predicts Hospice Use in the Nursing Home?

The choice to utilize hospice care in the nursing home when residents are experiencing progressive decline can promote positive quality of care and comfort for residents at the end of life. Concurrent hospice and nursing home care can be less aggressive, and improve symptom management and perceived quality by family members. Using a secondary analysis of retrospective data from the electronic medical record, this study identified predictors of hospice use among 300 nursing home decedents using a six-month look back period. Findings showed that having poorer physical status (weight loss), cognitive status, and having had a “goals of care” conversation were significantly associated with greater likelihood of using hospice in the nursing home in the last six months of life. Interdisciplinary team members who provide care on a daily basis and are in a position to detect worsening medical condition of residents and can facilitate advance planning. Care planning that includes examining goals of care and communication with hospice providers when multiple care providers are involved is essential.

ENVISION: A Tool to Improve Communication in Hospice Interdisciplinary Team Meetings.

Hospice interdisciplinary teams (IDTs) are required to meet regularly to update care plans for terminally ill patients and their family caregivers. Although providers see value in these meetings, they also experience frustration over meeting inefficiencies and communication challenges. The current article presents ENVISION, a tool designed to improve communication in hospice IDT meetings by providing attendees with access to up-to-date patient and family data to inform clinical decision making. In the current qualitative descriptive study, researchers explored the perspectives of hospice providers (n = 21) and family caregivers (n = 10) regarding ENVISION's usefulness and ease of use. Numerous factors influenced participants' perceptions of the tool as useful, including its impact on task efficiency, effectiveness, and difficulty. Perceptions of ENVISION's ease of use focused on ease of learning, operating, and interpreting data the tool provided. Findings suggest ENVISION would benefit hospice nurses in care management and senior leadership positions. [Journal of Gerontological Nursing, 46(7), 9-14.].

Using Telehealth for Hospice Reauthorization Visits: Results of a Quality Improvement Analysis

BackgroundIncreasing hospice need, a growing shortage of hospice providers, and concerns about in-person services because of coronavirus disease 2019 (COVID-19) require hospices to innovate care delivery. MeasuresThis project compared outcomes between hospice reauthorization visits conducted via telehealth and in person. After each visit, providers, patients, and caregivers completed telehealth acceptance surveys, and providers recorded reauthorization recommendations. InterventionProviders conducted 88 concurrent in-person and telehealth visits between June and November 2019. OutcomesNo statistically significant differences in reauthorization recommendations were found between telehealth and in-person visits. Satisfaction with telehealth was high; 88% of patients/caregivers and 78% of providers found telehealth services as effective as in-person visits. Conclusions/Lessons LearnedResults indicate that telehealth can successfully support clinical decision making for hospice reauthorization. These findings show telehealth to be reliable and acceptable for certain types of hospice care even before COVID-19, which emphasizes its importance both during and after the current public health emergency.

A Virtual Children's Hospice in Response to COVID-19: The Scottish Experience

This case report describes a pediatric hospice provider in Scotland and their experience implementing a telehospice program in response to COVID-19. Children's Hospices Across Scotland (CHAS) is the only provider of pediatric hospice care in the entire of Scotland, and we describe their experience offering pediatric telehospice. CHAS had strategically planned to implement a telehospice program, but COVID-19 accelerated the process. The organization evaluated its pediatric clinical and wrap-around hospice services and rapidly migrated them to a virtual environment. They creatively added new services to meet the unique needs of the entire family, who were caring for a child at end of life during COVID-19. CHAS's experience highlights the planning and implementing processes of telehospice with key lessons learned, while acknowledging the challenges inherent in using technology to deliver hospice care.

Differences in well-being and fear of death among female hospice employees and volunteers in Hungary

BackgroundVoluntary work plays a significant role in hospice care, but international research has mainly been conducted on the mental health and fear of death of paid hospice staff. The aim of the present study was to compare the Hungarian hospice volunteers with paid employees with regard to attitudes and fear of death, as well as mental health in order to see their role in hospice work and their psychological well-being more clearly.MethodsThe target population of the cross-sectional questionnaire study was hospice care providers in Hungary (N = 1255). The response rate was 15.5% (N = 195); 91.8% (N = 179) of them were women. The mean age of female hospice workers was 45.8 years (SD = 10.46 years, range: 23–73 years). One-quarter (27.9%, N = 50) of the female respondents were volunteers. The instruments were: the Multidimensional Fear of Death Scale, the Perceived Stress Scale, the WHO-5 Well-Being Index, and a shortened versions of the Beck Depression Inventory and the Maastricht Vital Exhaustion Questionnaire.ResultsVolunteers scored significantly lower on 5 dimensions of fear of death than paid employees, and showed significantly lower levels of vital exhaustion and significantly higher levels of psychological well-being than paid employees. Fear of the dying process was associated with an increased perceived stress, depressive symptoms, and vital exhaustion in both groups. Psychological well-being showed a significant negative, moderate correlation with four aspects of fear of death among paid staff; this pattern did not appear in the volunteer group. In addition, the association between fear of premature death and perceived stress, vital exhaustion, and depressive symptoms was more pronounced is case of paid workers.ConclusionHigher levels of psychological well-being and lower levels of fear of death among hospice volunteers suggest that they are less exhausted than paid employees. Increasing the recruitment of volunteers in hospices may help reduce the overload and exhaustion of paid employees.

A First Aid Kit for Supporting Children Around Death and Dying (SA525)

•Summarize adverse consequences of bereavement on child development.•Describe the epidemiology of child grief and how it constitutes a public health problem.•Identify at least three supportive techniques to implement when working with patients or families caring for grieving children. When considering the needs of hospice and palliative care patients, it is essential to care for the whole patient. In addition to medical needs, this includes addressing psychosocial and spiritual distress, as well as assessing and considering the needs of the patient's family. The loss of a parent or grandparent is often a child's first experience of death and grief. One in 20 children in the United States under the age of 15 will experience the death of a parent, and this figure does not include children who grieve individuals other than their biological parents. Based on United States census data published in 2016, this amounts to over 3.5 million parentally-bereaved children currently living in the United States. Bereavement in children has been observed with increased healthcare utilization, higher rates of mental disorder diagnosis and suicide compared to age-matched peers, and decreased school performance following a death. We consider these metrics to constitute child grief a public health matter of great concern. In the adult care setting, practitioners may not receive training on supporting the specific needs of grieving children. Given the high number of bereaved children and the risk for grief-related negative consequences on development and adjustment, we argue it is imperative that palliative care and hospice providers expand their skillset in supporting the children involved in the lives of ill and dying patients. This session will equip providers with information about the unique developmental needs of grieving children, strategies for talking to children about illness and death, and feasible interventions and resources to inform practice. Participants will gain a broader understanding of risk factors and community-based resources available for necessary referrals and ongoing support. By adequately addressing the needs of the children as well as adults, providers can provide more comprehensive patient-and family-centered care for their patients.

“It’s Like a Death Sentence but It Really Isn’t” What Patients and Families Want to Know About Hospice Care When Making End-of-Life Decisions

Hospice is underutilized, due to both lack of initiation from patients and late referral from clinicians. Prior research has suggested the reasons for underuse are multifactorial, including clinician and patient lack of understanding, misperceptions about the nature of hospice care, and poor communication during end-of-life discussions about hospice care. Little is known about the decisional needs of patients and families engaging in hospice decision-making. To understand the decisional needs of patients and families making decisions about hospice care. We conducted focus groups with family caregivers and hospice providers and one-on-one interviews with patients considering or enrolled in hospice care. We identified participants through purposeful and snowball sampling methods. All interviews were transcribed verbatim and analyzed using a grounded theory approach. Four patients, 32 family caregivers, and 27 hospice providers participated in the study. Four main themes around decisional needs emerged from the interviews and focus groups: (1) What is hospice care?; (2) Why might hospice care be helpful?; (3) Where is hospice care provided?; and (4) How is hospice care paid for? Hospice may not be the right treatment choice for all with terminal illness. Our study highlights where patients' and families' understanding could be enhanced to assure that they have the opportunity to benefit from hospice, if they so desire.