Palliative Services Research Articles

Awareness of Palliative Care, Hospice Care, and Advance Directives in a Racially and Ethnically Diverse Sample of California Adults.

Numerous studies have documented multilevel racial inequalities in health care utilization, medical treatment, and quality of care in minority populations in the United States. Palliative care for people with serious illness and hospice services for people approaching the end of life are no exception. It is also well established that Hispanics and non-Hispanic Blacks are more likely than non-Hispanic Whites to have less knowledge about advance care planning and directives, hospice, and palliative care. Both qualitative and quantitative research has identified lack of awareness of palliative and hospice services as one of the major factors contributing to the underuse of these services by minority populations. However, an insufficient number of racial/ethnic comparative studies have been conducted to examine associations among various independent factors in relation to awareness of end-of-life, palliative care and advance care planning and directives. The main objective of this analysis was to examine correlates of awareness of palliative, hospice care and advance directives in a racially and ethnically diverse large sample of California adults. This cross-sectional study includes 2,328 adults: Hispanics (31%); non-Hispanic Blacks (30%); and non-Hispanic Whites (39%) from the Survey of California Adults on Serious Illness and End-of-Life 2019. Using multivariate analysis, we adjusted for demographic and socio-economic variables while estimating the potential independent impact of health status, lack of primary care providers, and recent experiences of participants with a family member with serious illnesses. Hispanic and non-Hispanic Black participants are far less likely to report that they have heard about palliative and hospice care and advance directives than their non-Hispanic White counterparts. In this study, 75%, 74%, and 49% of Hispanics, non-Hispanic Blacks, and non-Hispanic White participants, respectively, claimed that they have never heard about palliative care. Multivariate analysis of data show gender, age, education, and income all significantly were associated with awareness. Furthermore, being engaged with decision making for a loved one with serious illnesses and having a primary care provider were associated with awareness of palliative care and advance directives. Our findings reveal that lack of awareness of hospice and palliative care and advance directives among California adults is largely influenced by race and ethnicity. In addition, demographic and socio-economic variables, health status, access to primary care providers, and having informal care giving experience were all independently associated with awareness of advance directives and palliative and hospice care. These effects are complex, which may be attributed to various historical, social, and cultural mechanisms at the individual, community, and organizational levels. A large number of factors should be addressed in order to increase knowledge and awareness of end-of-life and palliative care as well as completion of advance directives and planning. The results of this study may guide the design of multi-level community and theoretically-based awareness and training models that enhance awareness of palliative care, hospice care, and advance directives among minority populations.

Prevalence of resuscitation in cancer patients at the end of life-a population-based observational study from Germany.

Cardiopulmonary resuscitation (CPR) is a medical emergency intervention aimed at ending a life-threatening cardiovascular arrest as quickly as possible. However, the medical ethics of starting CPR in patients who have incurable and terminal disease is a matter of controversy. This ethical dilemma affects cancer patients in particular, as they are often suffering from advanced disease in a palliative situation. Few data are as yet available concerning the prevalence of CPR in patients with terminal cancer. A population-based cross-sectional study was carried out on the basis of death certificates of two large cities in Germany evaluated for 2017. Medical data on resuscitation and cause of death were analyzed. Cancer patients with or without a palliative situation were identified, and the prevalence of resuscitation in these patients was determined. In addition, factors influencing resuscitation were calculated using binary multivariate regression. A total of 8,496 persons died, 32.1% of whom [2,723] were cancer patients. A palliative situation was present in 80.9% of the cancer patients [2,202]. A total of 163 cancer patients and 1,006 individuals without cancer were resuscitated at the end of life, representing prevalences of 6.0% (95% CI, 5.1-6.9%) and 17.4% (95% CI, 16.4-18.4%), respectively. Cancer patients with a palliative disease status received CPR in 3.4% of cases (95% CI, 2.6-4.2%). More than half of the resuscitations were performed in hospital (57.7% of resuscitated persons and 68.7% of cancer patients). Sex, age, presence of a palliative situation, and care provided by a specialized outpatient palliative service were found to be independent influencing factors. Six in 100 cancer patients, and slightly more than three in 100 cancer patients with a palliative disease status, undergo CPR at the end of their lives. Thus, the indication for resuscitation in advanced cancer patients is handled with care and responsibility in Germany.

Global, regional, national burden of breast cancer in 185 countries: evidence from GLOBOCAN 2018.

This study aims to examine the burden of breast cancer in 185 countries in 2018. The estimates of incidence, mortality, and prevalence of breast cancer were drawn from GLOBOCAN 2018. The overall burden of breast cancer was gauged using breast cancer burden index (BRCBI)-a novel index comprising age-standardized incidence rate (ASIR), age-standardized mortality rate (ASMR), mortality-to-incidence ratio (MIR), prevalence-to-incidence ratio (PIR), and prevalence-to-mortality ratio (PMR). The socioeconomic status of countries was measured using human development index (HDI) RESULTS: Globally, breast cancer was responsible for an estimated 626,679 deaths at age-standardized rate of 13/100,000; there were 2.1 million cases diagnosed in 2018 at age-standardized rate of 46.3/100,000. The ASIR varied 22-fold from 5/100,000 (Bhutan) to 113.2/100,000 (Belgium). The ASMR varied 13-fold from 2.7/100,000 (Bhutan) to 36.9/100,000 (Fiji). The HDI exhibited a positive gradient with ASIR (r = 0.73), PIR (r = 0.98), and PMR (r = 0.85); with MIR, however, it exhibited a negative association (r = -0.83). The BRCBI spanned from 0.70 in Somalia to 78.92 in South Korea and exhibited a positive association with HDI (r = 0.76). An additional 46,823 female lives in 2018 and a cumulative total of 333,304 lives could have been saved over 2013-2018, had countries performed as per their HDI. The substantial burden of breast cancer in developing and low-resource economies calls for a holistic approach to cancer management and control that includes oncologic infrastructure to provide cost-effective screening, diagnostic, therapeutic, and palliative services, greater breast cancer awareness, and mitigation of risk factors.

Integrative Palliative Care Service Model Improved End-of-Life Care and Overall Survival of Advanced Cancer Patients in Hong Kong: A Review of Ten-Year Territory-Wide Cohort.

Background: Integrated palliative care in oncology service has been widely implemented in Hong Kong since 2006. Aim: The study aimed to review its impact on end-of-life outcomes and overall survival (OS) of cancer patients, as well as its utilization of health care resources in the past 10 years. Design: Cancer deaths of all 43 public hospitals of Hong Kong were screened. Setting/Participants: Randomly selected 2800 cancer deaths formed a representative cohort in all seven service clusters of Hospital Authority at four time points (2006, 2009, 2012, and 2015). Individual patient records were thoroughly reviewed. Propensity score-matched (PSM) analysis was employed to compare the survival of patients. Results: Palliative care provision was associated with improved palliative care outcome, including more prescription of strong opioid, fewer cardiopulmonary resuscitations and intensive care unit admissions, and less futile chemotherapy usage in the end-of-life period (all p < 0.001). In the PSM analysis, the median OS in patients with palliative service (5.10 months, 95% confidence interval [CI] 4.52-5.68 months) was significantly better than those without palliative service (1.96 months, 95% CI 1.66-2.27 months). Patients in the palliative care group had more specialist clinic visits (p < 0.001) and longer hospital stay (p < 0.001) in the last six months of life, although the duration of last admission stay at acute general ward was shortened (p < 0.001). Conclusion: Our results suggested palliative care has played a role in the remarkable improvement in end-of-life outcomes and OS. However, current palliative care model relied heavily on hospital resources. Future work is needed to strengthen community care and to build up quality monitoring systems.

Palliative Care Services in the NeuroICU: Opportunities and Persisting Barriers.

End-of-life (EOL) supportive care, including palliative and hospice services, is an area of increasing importance in critical care. Neurointensivists face unique challenges in providing timely supportive care to terminally ill patients expected to expire in the NeuroICU. This study explored the extent of effective utilization of, and recorded barriers to, palliative and hospice services in a dedicated 30-bed NeuroICU at a large academic medical center. A retrospective chart review of patients who expired in the NeuroICU was conducted. The timeline from patient admission to arrival of palliative care services was traced. Qualitative review of chart notes was used to identify barriers to provision of palliative services. A total of 330 patients expired in the NeuroICU during the study period, including 176 from the neurology and 154 from the neurosurgical service. Across services, 146 expired patients were never referred to palliative care or hospice services. Of those referred, over one-third were referred more than 4 days past admission to the NeuroICU. On average, patients were referred with less than 1 day before expiration. Common barriers to referral for supportive services were documented (e.g., patient expected to expire, family declined service). Despite benefits of palliative care and an in-hospital hospice opportunity, we identified lack of referral, and particularly delays in referral to services as significant barriers. Our study highlights these as missed opportunities for patients and families to receive maximum benefits from these services. Future research should solidify triggers for EOL services in this setting.

Challenges for palliative care day services: a focus group study

BackgroundPalliative care day services provide a safe environment for people with palliative care needs, enabling them to access a range of services while acting as a respite services for family caregivers. Viewed as marginal services, they are often under resourced and under researched. The aim of this study was to understand how palliative day care services contribute to client care from the perspective of management and hospice multidisciplinary teams.MethodsA descriptive qualitative study, using six focus groups conducted with staff at three United Kingdom hospices in England, Scotland and Northern Ireland. Thirty-five participants were recruited, including management and staff. Discussions were transcribed and analysed thematically.ResultsFour key themes emerged: (1) variations of care, beyond heterogeneity of patients; (2) unclear referrals and inconsistent patient population; (3) recognising strengths and challenges and (4) an uncertain future. A major focus of group discussions was the model of care and the benefits of the service, however the importance of demonstrating services’ effectiveness and value for money was highlighted.ConclusionsManagement and hospice staff believed day-services to be a helpful introduction to palliative care, providing both social and medical support. Economic pressures and patient demand were influencing them to move from a social model to a hybrid model. Further research is needed to understand the effectiveness of the service.

Stakeholder perspectives and requirements to guide the development of digital technology for palliative cancer services: a multi-country, cross-sectional, qualitative study in Nigeria, Uganda and Zimbabwe

IntroductionCoverage of palliative care in low and middle-income countries is very limited, and global projections suggest large increases in need. Novel approaches are needed to achieve the palliative care goals of Universal Health Coverage. This study aimed to identify stakeholders’ data and information needs and the role of digital technologies to improve access to and delivery of palliative care for people with advanced cancer in Nigeria, Uganda and Zimbabwe.MethodsWe conducted a multi-country cross-sectional qualitative study in sub-Saharan Africa. In-depth qualitative stakeholder interviews were conducted with N = 195 participants across Nigeria, Uganda and Zimbabwe (advanced cancer patients n = 62, informal caregivers n = 48, health care professionals n = 59, policymakers n = 26). Verbatim transcripts were subjected to deductive and inductive framework analysis to identify stakeholders needs and their preferences for digital technology in supporting the capture, transfer and use of patient-level data to improve delivery of palliative care.ResultsOur coding framework identified four main themes: i) acceptability of digital technology; ii) current context of technology use; iii) current vision for digital technology to support health and palliative care, and; iv) digital technologies for the generation, reporting and receipt of data. Digital heath is an acceptable approach, stakeholders support the use of secure data systems, and patients welcome improved communication with providers. There are varying preferences for how and when digital technologies should be utilised as part of palliative cancer care provision, including for increasing timely patient access to trained palliative care providers and the triaging of contact from patients.ConclusionWe identified design and practical challenges to optimise potential for success in developing digital health approaches to improve access to and enhance the delivery of palliative cancer care in Nigeria, Uganda and Zimbabwe. Synthesis of findings identified 15 requirements to guide the development of digital health approaches that can support the attainment of global health palliative care policy goals.

Palliative care and COVID-19 in the Australian context: a review of patients with COVID-19 referred to palliative care.

Objective Palliative care has played a key role in the response to the coronavirus disease 2019 (COVID-19) pandemic in Australia. This review of consecutive patients with COVID-19 referred to the palliative care consultancy service of a tertiary health service in Melbourne describes the palliative care experience with COVID-19 in Australia. Methods The experiences of 55 patients (median age 86 years; interquartile range (IQR) 81-90 years; 55% male; median Charlson comorbidity score 6 (IQR 5-8); 85% with Australia-modified Karnofsky Performance Status ≤50; 67% from residential aged care facilities) were reviewed to collect relevant data points. Results Most patients were referred for end-of-life care with symptoms including dyspnoea (80%) and agitation/delirium (60%). Continuous subcutaneous infusions were commenced in 71% of patients, with the most frequent medications being opioids and benzodiazepines in relatively small doses; 81% required ≤20 mg subcutaneous morphine equivalent and 64% required ≤10 mg subcutaneous midazolam over 24 h. Fifty patients (91%) died in hospital and the median time from palliative care referral to death was 3 days (IQR 1-5 days). Five patients were discharged back to residential aged care facilities. Overall, 80% of referrals were from the aged care team. Conclusion Our patients had similar demographics, symptoms, medication needs and outcomes to patients in similar settings overseas. We found the symptom management of patients with COVID-19 to be generally straightforward. However, the psychosocial needs of patients were predominant and contributed to complexity. This study highlights the need for well-integrated relationships between the palliative care consultancy service and the diverse range of key treating teams involved in the delivery of pandemic health care. What is known about the topic? Palliative care has played a key role in the response to the COVID-19 pandemic in Australia. There is limited research describing the Australian palliative care experience with the COVID-19 pandemic. What does this paper add? Patients with COVID-19 referred to a hospital-based palliative care consultancy service in Australia had similar demographic characteristics, symptoms, medication needs and outcomes to patients with COVID-19 referred to other palliative care services in the UK and the US. There were significant psychosocial issues affecting patients, families and staff in the context of the pandemic. What are the implications for practitioners? This study highlights the need for well-functioning working relationships between the palliative care consultancy service and other hospital teams that can be leveraged at a time of crisis, such as a pandemic, to provide optimal palliative care to patients.

Palliative and End-of-Life Care in the Home in Regional/Rural Victoria, Australia: The Role and Lived Experience of Primary Carers.

IntroductionPalliative support services (generalist or specialist) can provide much-needed assistance to carers who are providing palliative and end-of-life care in their homes, but access to such services in regional and rural areas of Australia is poorly understood.ObjectivesThis study aimed to explore the role and lived experience of primary carers who are providing palliative and end-of-life care in the home in regional/rural Victoria, Australia.MethodsNine female participants, of whom six were bereaved between 7 and 20 months were interviewed using a semistructured interview technique. Each interview was audio-recorded, transcribed verbatim, and analyzed thematically.ResultsTwo themes emerged: “Negotiating healthcare systems” which described the needs for multidisciplinary supports and “The caring experience” which discussed daily tasks, relationships, mental and physical exhaustion, respite, isolation, medication management, and grief and loss. Findings show that regional/rural carers have an added burden of travel stress as well as feeling overwhelmed, isolated, and physically and emotionally exhausted. Carers would benefit from greater flexibility for short-term respite care. The engagement of specialist palliative care services assisted the participants to navigate the health care system.Some participants did not understand the value of palliative care, highlighting the need for general practitioners to conduct early conversations about this with their patients. Education is needed to build capacity within the primary palliative care workforce, confirming the importance of timely referrals to a specialist palliative care practitioner if pain or symptom control is not effectively managed.ConclusionProviding palliative and end-of-life care in the home is an exhausting and emotionally draining role for unpaid, primary carers. Multiple supports are needed to sustain primary carers, as they play an essential role in the primary health care system.

Poster Presentation

Poster Presentation

Telemedicine as an Acceptable Model of Care in Advanced stage Cancer Patients in the Era of Coronavirus Disease 2019 - An Observational Study in a Tertiary Care Centre.

Objectives:The availability of routine care for patients with cancer during the coronavirus disease 2019 (COVID-19) pandemic has become challenging, and the use of telemedicine can be promising in this area. The objective of the study is to evaluate the feasibility of telemedicine-based palliative interventions in cancer patients.Materials and Methods:This retrospective study was conducted in a tertiary care centre with 547 follow-up patients who used palliative medicine teleconsultation services. The following data were retrieved from the records: Patient’s reason for the call, the main barriers to a hospital visit, the assistance given to them by the physician on the call and the patients’ satisfaction with the service on a 4-point scale. The data were analysed using percentages for categorical variables and mean/standard deviation for quantitative variables.Results:Out of the 547 patients, 462 (84.46%) utilised voice calling service, and the major reason for not visiting the hospital were cited to be fear of contracting COVID-19 (37.3%), inability to attend due to health constraints (7.13%) and issues with transportation (48.8%). The majority of the calls (63.62%) calls were regarding uncontrolled symptoms of the primary diseases. A total of 402 (73.49%) patients were very satisfied, and a total of 399 (72.94%) decided to continue to use this medium in the future as well.Conclusion:Telemedicine is a good modality for the assessment of chronic pain and providing symptomatic supportive care in patients with cancer in the COIVD-19 pandemic.

Understanding the Needs of Australian Carers of Adults Receiving Palliative Care in the Home: A Systematic Review of the Literature.

IntroductionCaring for someone at home requiring palliative care is an ominous task. Unless the current support systems are better utilised and improved to meet the needs of those carers, the demand for acute hospital admissions will increase as the Australian population ages. The aim of this review was to examine the needs of unpaid carers who were caring for adults receiving palliative care in their home in Australia.Methods: A systematic review of the literature was conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) Guidelines between 2008–2020.Results: Only Australian papers were selected due to the intent to understand carers’ needs in the Australian context and 17 papers made up the final data set. Four themes emerged: 1) Perceived factors influencing caregiving; 2) Perceived impact and responses to caregiving; 3) Communication and information needs; and 4) Perceptions of current palliative support services and barriers to uptake.Conclusion: Carers reported satisfaction and positive outcomes and also expressed feeling unprepared, unrecognised, stressed and exhausted.

A SURVEY INTO MORTALITY CAUSES IN ADULTS IN THE KINGDOM OF SAUDI ARABIA

Introduction:The main objective of the current study was to analyse the causes of death in different ages, genders, and regions in the kingdom of Saudi Arabia. Also, the research aims to identify the prevalence of important risk factors in deceased people. Additionally, it aims to determine the condition of death for the sample. Methods:This is an analytical cross-sectional study which was carried out through a survey of 10 questionnaires conducted on relatives of people who passed away in the last five years, in the Kingdom of Saudi Arabia. The study was conducted from June 29th. 2020 to September 30th. 2020. The sample was randomly selected, through the computer. Results:The authors got responses from 1100 people who fit with the inclusion criteria. The mean age was 64 years. The five leading causes of death were cardiovascular disorders (20%), stroke (10%), cancer (10%), pneumonia (10%), and road traffic accidents (10%). 30% of deceased people had diabetes mellitus, and 40% had obesity. 61.5% of the sample passed away in hospitals. (P-value 0.05). Only 5.5% of people had their relatives known to palliative service. Interpretation and Conclusions:The current research provided an analysis of the causes of death in the Kingdom of Saudi Arabia from 2015 to 2020. The leading causes of death were cardiovascular disorders, stroke, cancer, pneumonia, and road traffic accidents. The prevalence of diabetes mellitus and obesity were high among deceased people.

Impact of the Coronavirus Pandemic on Pediatric Palliative Care Team Structures, Services, and Care Delivery.

Objectives: Define the impact of the coronavirus pandemic on pediatric palliative care team structures, communication, and workflow; and describe the roles, responsibilities, and reflections of interdisciplinary team members. Methods: Cross-sectional online surveys were posted on seven professional Listservs from May 2020 to June 2020. Data were summarized descriptively and with semantic content analyses. Results:N = 207 surveys were completed by pediatric palliative program representatives from 80 cities, inclusive of physicians, nurses, child life, social workers, chaplains, and psychologists. Teams consulted on <20% of potential or presumed COVID-19 cases in their centers. Sixty percent of personnel were deemed "essential" during the pandemic. One-third of personnel remained in their usual work locale, with some shifting to support adult palliative services and others working remotely. Over 60% reported a sense of team "distance" compared with "close" team cohesion, associated with physical location of team members (p < 0.01) and frequency of team counseling, education, or support meetings (p < 0.02). All programs adopted a form of telehealth for patient care, although 41% did not receive telehealth training and 73% perceived unequal care quality with virtual care. Absence of pediatric patients' family members due to visitation policies, missing human presence and physical touch, concern for personal and colleague health, and fear of financial sustainability for programs were notable stressors. Conclusions: While the number of children diagnosed with COVID-19 receiving hands-on care from pediatric palliative care teams was reportedly low, the coronavirus pandemic vastly impacted pediatric palliative care team structure, daily services, and communication models warranting attentiveness to lessons learned and future direction.

Not Just Sitting By: Family Caregivers’ Perspectives on Triadic Communication

Most studies of communication in gerontology and palliative care focus on dyadic communication. In reality, encounters in palliative oncology very often involve three or more people: a healthcare professional, a patient, and a family caregiver. This triadic communication differs in important ways from communication involving only two parties. In this secondary analysis of qualitative data collected during a randomized controlled trial of a psychosocial intervention for family caregivers receiving palliative oncology services, researchers explored family caregivers’ (n = 63) perspectives on triadic communication encounters involving themselves, the patient and one or more clinicians. Family caregivers tended to appreciate clinicians’ efforts to involve them in communication, rather than regarding them as “just sitting by” the patient. Many perceived that their own wishes regarding information provision were often ignored and reported that their own coping and wellbeing were not often assessed outside of encounters with the specialist palliative care team.

The Impact of Obesity in End of Life Care in Patients With End Stage Liver Disease: An Observational Study.

Both obesity and end stage liver disease (ESLD) are increasing. Obesity's impact on hospice and palliative care in patients with ESLD is unknown. We retrospectively evaluated patients admitted to an academic, Midwestern, tertiary center between January 2016 and May 2019 with a diagnosis of ESLD. Body Mass Index and MELD Na were calculated for each patient's first admission during the study period. Patients with MELD Na scores ≥ 21 or 18-20 with additional criteria were considered potentially eligible for hospice and palliative care referrals. Of 3863 patients admitted with ESLD, 1556 (40%) were potentially eligible for hospice and palliative care referrals. Of these, 703 (45%) were obese. Comorbidity burden was higher in obese patients (15.6% of obese patients had a Charlson Comorbidity Index ≥ 5, while 5% of non-obese patients had a comorbidity index of ≥ 5 (p < 0.001). Referral rates to hospice and palliative services in obese patients were 10.1% and 16.4% respectively. Hospice and palliative referral rates among non-obese patients were similar (10.1% and 15.5%). Among patients who died within 6 months of the first hospitalization, the mean time to referral to hospice or palliative care from index admission was longer in obese patients. Obesity is common in patients hospitalized with ESLD who may be approaching the end of life. Referral rates to hospice and palliative care services are low and similar regardless of BMI and despite higher co-morbidity burdens in obese patients. Obesity may delay referrals to hospice and palliative care.

Abstract PO-113: Survey aimed at understanding caregiver attitudes towards components of an effective home care service

Abstract Background Home care teams ensure that essential palliative medicine services are available at the Patient's doorstep. The complexities accompanying the duties of a caregiver in provision of holistic palliative and end of life care in these circumstances are underlined by the existence of psychological issues such as caregiver burden and distress, unique to this population. Re-dressal of these psychological constructs, which have the potential to impact the family's perception of effectiveness of services is an important responsibility of the home care service provider. Methods A questionnaire based upon themes of purview, scope and composition of Home care services was administered during a visit undertaken as part of month long posting in a Non-governmental organization. Caregiver opinion on issues such as frequency, timing and duration of visits and preferences in addition to important domains of patient care were sought. Results A total of 9 caregivers provided their consent for the interview. There was a reasonable degree of resonance with the idea that the Home care team should stock essential drugs, general agreement that the services being rendered were essential to the patient and their caregivers, acceptance that the frequency of visits remain once a week, due acknowledgement of the central role of the accompanying doctor and importance of a social worker during the visit. Majority (8/9) of those interviewed, agreed that the Home care team should be lead by a doctor, while, a similar number concurred that affilation to an NGO provided a more human face to the endeavour. However, there was a lack of consensus on the appropriateness of weekend visits, optimum time spent per visit (limiting the total duration of interaction with the patient and family to a maximum of 15 minutes had only 3 takers), acceptability of maintaining a drug diary and need for the same doctor to accompany the team on consecutive visits. Conclusions Guidelines are yet to address the duties and responsibilities of the Physician providing Home care services. Outreach programmes, which provide an opportunity to impart quality caregiver education, cater to a well defined population and involve the close participation of the Local health functionaries could help build momentum in the right direction. Citation Format: Rahul D. Arora. Survey aimed at understanding caregiver attitudes towards components of an effective home care service [abstract]. In: Proceedings of the AACR Virtual Conference: Thirteenth AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2020 Oct 2-4. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2020;29(12 Suppl):Abstract nr PO-113.

Lack of Exposure to Palliative Care Training for Black Residents: A Study of Schools With Highest and Lowest Percentages of Black Enrollment

ContextThe palliative medicine workforce lacks racial diversity with <5% of specialty Hospice and Palliative Medicine (HPM) fellows identifying as black. Little is known about black trainees' exposure to palliative care during their medical education. ObjectivesTo describe palliative care training for black students during medical school, residency, and fellowship training. MethodsWe conducted a cross-sectional descriptive study using Internet searches and phone communication in September 2019. We evaluated 24 medical schools in three predetermined categories: historically black colleges and universities (HBCUs; N = 4) and non-under-represented minority-serving institutions with the highest (N = 10) and lowest (N = 10) percentages of black medical students. Training opportunities were determined based on the presence of a course, clerkship, or rotation in the medical school and residency curricula, a specialty HPM fellowship program, and specialty palliative care consult service at affiliated teaching hospitals. ResultsNone of the four HBCUs with a medical school offered a palliative care course or clerkship, rotation during residency, or specialty HPM fellowship program. Three of four HBCUs were affiliated with a hospital that had a palliative care consult service. Institutions with the highest black enrollment were less likely to offer palliative care rotations during internal medicine (P = 0.046) or family medicine (P = 0.019) residency training than those with the lowest black enrollment. ConclusionResidents at schools with the highest black medical student enrollment lack access to palliative care training opportunities. Efforts to reduce health disparities and underrepresentation in palliative care must begin with providing palliative-focused training to physicians from under-represented minority backgrounds.

Early-onset pancreatic cancer: an institutional series evaluating end-of-life care.

Little is known about the use of palliative and hospice care and their impact on healthcare utilization near the end of life (EOL) in early-onset pancreatic cancer (EOPC). Patients with EOPC (≤ 50 years) were identified using the institutional tumor registry for years 2011-2018, and demographic, clinical, and rates of referral to palliative and hospice services were obtained retrospectively. Predictors of healthcare utilization, defined as use of ≥ 1 emergency department (ED) visit or hospitalization within 30 days of death, place of death (non-hospital vs. hospital), and time from last chemotherapy administration prior to death, were assessed using descriptive, univariable, and multivariable analyses including chi-square and logistic regression models. A total of 112 patients with EOPC with a median age of 46 years (range, 29-50) were studied. Forty-four percent were female, 28% were Black, and 45% had metastatic disease. Fifty-seven percent received palliative care at a median of 7.8 weeks (range 0-265) following diagnosis. The median time between last chemotherapy and death was 7.9 weeks (range 0-102). Seventy-four percent used hospice services prior to death for a median of 15 days (range 0-241). Rate of healthcare utilization at the EOL was 74% in the overall population. Black race and late use of chemotherapy were independently associated with increase in ED visits/hospitalization and hospital place of death. Although we observed early referrals to palliative care among patients with newly diagnosed EOPC, short duration of hospice enrollment and rates of healthcare utilization prior to death were substantial.

INNV-14. UTILIZATION OF A PATIENT FAMILY ADVISORY COUNCIL TO ADVANCE PATIENT-CENTERED CARE OF BRAIN TUMOR PATIENTS

Abstract INTRODUCTION Developing and advancing patient-centered care within neuro-oncology is an essential element of any tertiary brain tumor center. Patient-centered care of neuro-oncology patients requires a holistic approach that integrates oncologic treatment with social and psychological support. OBJECTIVE The aim of this study is to evaluate how a Patient Family Advisory Council can be created within an existing brain tumor center and utilized to improve patient-centered care. METHODS Current patients and caregivers were recruited by brain tumor staff to participate in monthly meetings. All participants underwent screening and training by our Patient Education Research Center team. Discussions focused on current and future brain tumor center initiatives, and participants were encouraged to give feedback from the patient perspective. New ideas to improve the patient experience were solicited. RESULTS A total of 15 participants (female = 57%) were recruited, including 10 with grade 3 or higher brain tumors. Monthly meetings, in-person or virtual, were held for two years. Utilizing participant feedback, the group updated our 80-page patient handbook that contained a variety of patient-caregiver focused resources. Participants also provided feedback on other brain tumor center initiatives such as development of a magnet featuring key phone numbers, an easily accessible website URL for emergencies, and numerous updates to the external website. Additional discussions involved development of neuro-oncology care pathways as we move to a stand-alone cancer center facility and initiation of OncoSTAT and palliative services in this population. CONCLUSION Brain tumor patients require a comprehensive oncologic treatment team as well as a wide variety of support services. A Patient Family Advisory Council is an effective method of advancing patient-centered care and a step toward improving the neuro-oncology patient experience.