Access To Palliative Care Research Articles

What's in This For You? What's in This For Me?: A Win-Win Perspective of Involving Study Advisory Committee Members in Palliative Care Research.

Study advisory committees (SACs) provide critical value to clinical trials by providing unique perspectives that pull from personal and professional experiences related to the trial's healthcare topic. The Emergency Medicine Palliative Care Access (EMPallA) study had the privilege of convening a 16-person SAC from the project's inception to completion. The study team wanted to understand the impact this project had on the SAC members. In this narrative, we use reflective dialogue to share SAC members' lived experiences and the impact the EMPallA study has had on members both personally and professionally. We detail the (1) benefits SAC members, specifically patients, and caregivers, have had through working on this project. (2) The importance of recruiting diverse SAC members with different lived experiences and leveraging their feedback in clinical research. (3) Value of community capacity building to ensure the common vision of the clinical trial is promoted.

Increasing access to palliative care for patients with advanced cancer of African and Latin American descent: a patient-oriented community-based study protocol

BackgroundCancer disparities are a major public health concern in Canada, affecting racialized communities of Latin American and African descent, among others. This is evident in lower screening rates, lower access to curative, and palliative-intent treatments, higher rates of late cancer diagnoses and lower survival rates than the general Canadian population. We will develop an Access to Palliative Care Strategy informed by health equity and patient-oriented research principles to accelerate care improvements for patients with advanced cancer of African and Latin American descent.MethodsThis is a community-based participatory research study that will take place in two Canadian provinces. Patients and community members representatives have been engaged as partners in the planning and design of the study. We have formed a patient advisory council (PAC) with patient partners to guide the development of the Access to Palliative Care Strategy for people of African and Latin American descent. We will engage100 participants consisting of advanced cancer patients, families, and community members of African and Latin American descent, and health care providers. We will conduct in-depth interviews to delineate participants’ experiences of access to palliative care. We will explore the intersections of race, gender, socioeconomic status, language barriers, and other social categorizations to elucidate their role in diverse access experiences. These findings will inform the development of an action plan to increase access to palliative care that is tailored to our study population. We will then organize conversation series to examine together with community partners and healthcare providers the appropriateness, effectiveness, risks, requirements, and convenience of the strategy. At the end of the study, we will hold knowledge exchange gatherings to share findings with the community.DiscussionThis study will improve our understanding of how patients with advanced cancer from racialized communities in Canada access palliative care. Elements to address gaps in access to palliative care and reduce inequities in these communities will be identified. Based on the study findings a strategy to increase access to palliative care for this population will be developed. This study will inform ways to improve access to palliative care for racialized communities in other parts of Canada and globally.

Palliative care research utilising intersectionality: a scoping review

BackgroundAccess to palliative care is recognised as a human right, yet clear disparities exist. There have been recent appeals to examine people’s contexts and interactions with social systems which for many, adversely influence their utilisation of palliative care. Intersectionality provides a way to understand these drivers of inequity and ultimately advocate for change.AimTo identify and describe published studies utilising intersectionality in relation to need, access and experience of palliative care.DesignA scoping review.Data sourcesMedline, PsycINFO, CINAHL and Google Scholar databases and a manual search were undertaken for studies published up to January 2023. Included studies were evidence based articles where palliative or end of life care was the focus and intersectionality was identified and/or applied to the research that was undertaken.ResultsTen published studies were included. An analytic framework was developed to identify the extent that intersectionality was utilised in each study. A wide range of different groups were researched across the studies, with most focusing on aspects of their participant’s identity in relation to palliative care access and experience. Common topics of power, heterogeneity of people within the health system and barriers to palliative care were illuminated across the studies.ConclusionsVery limited research to date has utilised intersectionality to understand access, utilisation and experience of palliative care. This scoping review demonstrates intersectionality can provide a way to illuminate rich understandings of inequity in palliative care. It is imperative that future palliative research incorporates an intersectionality focus to further clarify the needs and experiences of structurally marginalised groups.

Quality of death in patients in advanced chronic liver disease and cancer patients managed by gastroenterologists in Portugal: are we doing it right?

The incidence of chronic progressive diseases is rising and investment on quality of death and dying is of utmost importance to minimize physical and emotional suffering. There is still a gap in palliative care (PC) between patients with cancer and those with advanced chronic liver disease (ACLD). Our objectives were to characterize clinical attitudes and therapeutic interventions and to evaluate the differences in end-of-life care between inpatients with cancer and ACLD under gastroenterology care. Retrospective cohort study, including patients with cancer or ACLD who died in a Gastroenterology department between 2012 and 2021. Demographic characteristics, clinical and endoscopic procedures and symptom control were compared between the groups. From 150 patients, 118 (78.7%) died with cancer and 32 (21.3%) died from ACLD without concomitant hepatocellular carcinoma. ACLD patients were more frequently male ( P = 0.001) and younger ( P = 0.001) than patients with cancer. Median time of hospitalization in the last month of life was 16 days for both groups. Discussion of prognosis with the patient was more frequent for cancer patients (35.6% versus 3.2%, P < 0.001). Referral to PC occurred in 18.8% and 61% of the patients with ACLD and cancer respectively ( P < 0.001). Endoscopic procedures were performed in half of the patients and were more likely to be unsuccessful in those with cancer. Clinical decisions were different between groups in terms of PC access and discussion of prognostic with the patient. It is urgent to define and implement metrics of quality of death and dying to prevent potentially inappropriate treatment.

“If we don’t speak the language, we aren’t offered the same opportunities”: Qualitative perspectives of palliative care coordination for women of color living with metastatic breast cancer.

88 Background: Black and Latina women with metastatic breast cancer (MBC) experience more severe distress, unaddressed symptom burden, and discordant provider communication relative to White women. Adequate care coordination has the potential to mitigate disparities in care access and outcomes, yet little is known regarding palliative care (PC) coordination experiences in women living with MBC. Methods: We conducted a qualitative thematic analysis of transcribed interviews of Black and Latina women with MBC (N=20) and interdisciplinary care providers (N=20). Participants were recruited from urban PC and oncology clinics, federally qualified health centers, and community organizations. Transcripts were reviewed and analyzed by a team of investigators, community scientists and community advisory board members. Themes were identified with inductive coding. Results: Barriers and facilitators of PC coordination were identified. Barriers included a) lack of communication between oncology, PC, and primary care teams, b) limited understanding and stigma surrounding PC among patients and non-PC providers, c) language and health literacy-related communication challenges, and d) racism and marginalization, including implicit bias and lack of diverse racial/ethnic representation in the supportive care workforce. Facilitators of PC coordination included a) patient-to-patient referrals, b) support groups breaking cultural stigma on topics including self-advocacy and PC, c) referrals from trusted providers, and d) community organization’s abilities to overcome challenges related to social determinants of health with logistical and financial support. Respondents reported barriers of quality PC coordination resulted in significant gaps in management of psychosocial and physical symptoms, including mental health, lymphedema, sexual health, cognitive health, and pain. Conclusions: Care coordination and patient reported PC outcomes are heavily influenced by social determinants of health and stigma surrounding PC. Patients and providers value patient-to-patient referrals, support groups, and community organizations in improving care coordination and early PC access. The results from this study will inform the design of ACCESS, a community navigator-led intervention for Black and Latina women with MBC focusing on acceptance of early PC and linkage to community and clinical resources.

Palliative care in Ethiopia’s rural and regional health care settings: a qualitative study of enabling factors and implementation challenges

BackgroundPalliative care is limited in Ethiopia, particularly in rural areas, where more than 78% of the population live. Current initiatives and research are focused on urban settings and are primarily donor dependent. This study aims to explore the status of palliative care, enabling factors and implementation challenges in Ethiopia’s rural and regional health care settings.MethodsA qualitative regional case study was conducted with health professionals drawn from different health care settings, academic institutions and included health planners and practitioners. Focus groups were conducted with rural community members and face- to face- individual interviews were conducted with health professionals working in numerous roles as well as academic leaders.ResultsParticipants indicated that despite a few leaders being aware of the inclusion of palliative care in the Ethiopia national policies and guidelines, palliative care is not, integrated into the existing health care system. Other participants responded that palliative care is not well integrated into the undergraduate and postgraduate courses except for limited content in the diploma and a few postgraduate courses. Participants described the challenges for palliative care implementation as follows: many lacked awareness about palliative care; and chronically ill patients other than those with HIV received inadequate care, limited to physical care, some pain management, and psychosocial support rather than comprehensive palliative care. In addition, some participants perceived that palliative care was not within the remit of their service, so families and patients were forced to seek alternative or informal care, including from traditional healers.ConclusionsEnablers for the improvement of palliative care access in rural and regional health care were identified, including better integration of palliative care into the national health care plan and guidelines; palliative care content in university and college courses; and use of mobile phone technology to facilitate care. And policy makers and responsible stakeholders could consider the palliative care implementation in rural and regional health care settings through a combination of home, community and facility-based models.

Barriers, blocks, and barricades: Disparities to access of palliative care in cancer care

Palliative care (PC) is specialized medical care for people living with a serious illness. PC models have stressed pain and symptom management, communication that is patient- and family-centric and longitudinal support for families living with serious illness that is contiguous across multiple settings. Despite the benefits that PC provides from a patient, family and quality of care standpoint, several barriers and disparities exist. Included in these barriers are the lack of geographic access to PC programs as well as the focus on inpatient, hospital-based PC programs versus outpatient and home-based models. Workforce shortages, challenges with defining and designing PC, and racial, cultural and language barriers have all contributed to disparities within PC.This review article outlines PC disparities including geographic access challenges, cross-cultural barriers and symptom and communication specific disparities. We discuss the impact these inequities have on patients living with cancer.

Service Level Characteristics of Rural Palliative Care for People with Chronic Disease.

Despite clear benefit from palliative care in end-stage chronic, non-malignant disease, access for rural patients is often limited due to workforce gaps and geographical barriers. This study aimed to understand existing rural service structures regarding the availability and provision of palliative care for people with chronic conditions. A cross-sectional online survey was distributed by email to rural health service leaders. Nominal and categorical data were analyzed descriptively, with free-text questions on barriers and facilitators in chronic disease analyzed using qualitative content analysis. Of 42 (61.7%) health services, most were public (88.1%) and operated in acute (19, 45.2%) or community (16, 38.1%) settings. A total of 17 (41.5%) reported an on-site specialist palliative care team, primarily nurses (19, 59.5%). Nearly all services (41, 95.3%) reported off-site specialist palliative care access, including: established external relationships (38, 92.7%); visiting consultancy (26, 63.4%); and telehealth (18, 43.9%). Perceived barriers in chronic disease included: lack of specific referral pathways (18; 62.1%); negative patient expectations (18; 62.1%); and availability of trained staff (17; 58.6%). Structures identified to support palliative care in chronic disease included: increased staff/funding (20, 75.0%); formalized referral pathways (n=18, 64.3%); professional development (16, 57.1%); and community health promotion (14, 50%). Palliative care service structure and capacity varies across rural areas, and relies on a complex, at times ad hoc, network of onsite and external supports. Services for people with chronic, non-malignant disease are sparse and largely unknown, with a call for the development of specific referral pathways to improve patient care.

National survey on the availability of oncology palliative care services at tertiary general and cancer hospitals in China

BackgroundThis nationwide survey studied the level of palliative care (PC) access for Chinese patients with cancer among cancer care providers either in tertiary general hospitals or cancer hospitals in China.MethodsUsing a probability-proportionate-to-size method, we identified local tertiary general hospitals with oncology departments to match cancer hospitals at the same geographic area. A PC program leader or a designee at each hospital reported available PC services, including staffing, inpatient and outpatient services, education, and research, with most questions adapted from a previous national survey on PC. The primary outcome was availability of a PC service.ResultsMost responders reported that some type of PC service (possibly called “comprehensive cancer care,” “pain and symptom management,” or “supportive care”) was available at their institution (84.3% of tertiary general hospitals, 82.8% of cancer hospitals). However, cancer hospitals were significantly more likely than tertiary general hospitals to have a PC department or specialist (34.1% vs. 15.5%, p < 0.001). The most popular services were pain consultation (> 92%), symptom management (> 77%), comprehensive care plans (~ 60%), obtaining advanced directives and do-not-resuscitate orders (~ 45%), referrals to hospice (> 32%), and psychiatric assessment (> 25%). Cancer hospitals were also more likely than tertiary general hospitals to report having inpatient beds for PC (46.3% vs. 30.5%; p = 0.010), outpatient PC clinics (28.0% vs. 16.8%; p = 0.029), educational programs (18.2% vs. 9.0%, p = 0.014), and research programs (17.2% vs. 9.3%, p < 0.001).ConclusionsCancer hospitals are more likely to offer PC than are tertiary general hospitals in China. Our findings highlight opportunities to further increase the PC capacity in Chinese hospitals.

Quality outcomes for end-of-life care among people with haematological malignancies at a New Zealand cancer centre.

Little is known about the end-of-life (EOL) experience and specialist palliative care use patterns of patients with haematological malignancies (HMs) in New Zealand. This retrospective analysis sought to examine the quality of EOL care received by people with HMs under the care of Auckland District Health Board Cancer Centre's haematology service and compare it to international data where available. One hundred consecutive adult patients with HMs who died on or before 31 December 2019 were identified. We collected information on EOL care quality indicators, including anticancer treatment use and acute healthcare utilisation in the last 30 days of life, place of death and rate and timing of specialist palliative care input. During the final 14 and 30 days of life, 15% and 27% of the patients received anticancer therapy respectively. Within 30 days of death, 22% had multiple hospitalisations and 25% had an intensive care unit admission. Death occurred in an acute setting for 42% of the patients. Prior contact with hospital and/or community (hospice) specialist palliative care service was noted in 80% of the patients, and 67% had a history of hospice enrolment. Among them, 15% and 28% started their enrolment in their last 3 and 7 days of life respectively. The findings highlight the intensity of acute healthcare utilisation at the EOL and high rates of death in the acute setting in this population. The rate of specialist palliative care access was relatively high when compared with international experiences, with relatively fewer late referrals.

Innovations for the integration of palliative care for hematologic malignancies

Specialist palliative care provides additional support to facilitate living well with a serious illness, like cancer, even while pursuing disease-directed therapy. For patients with hematologic malignancies, integrated specialist palliative care improves symptom burden, mood, and quality of life, with benefits even extending to caregivers. Despite this, patients with hematologic malignancies continue to have significant unmet palliative care needs and typically access palliative care late in their disease trajectories, if at all. In this paper, we will define specialist palliative care and review its benefits for patients with hematologic malignancies. We will discuss the unmet palliative care needs of this patient population and the barriers to integrating palliative care and oncologic care. Finally, we will explore innovations and areas of future research to enhance and optimize palliative care integration into usual cancer care treatment for patients with hematologic malignancies. We will explore the importance of ongoing clinical trials that are examining the correct "dose" of palliative care; the use of technology and telehealth; and the use of novel treatments for this patient population. Together, we will consider innovative avenues to provide palliative care to patients with hematologic malignancies and their caregivers.

Patient, Caregiver, and Clinician Perceptions of Palliative Care that Influence Access and Use: A Qualitative Meta-Synthesis.

Objective: Benefits of integration of palliative care early in the trajectory of a patient's serious illness are well established in the literature. Yet, barriers to palliative care access in the US continue to exist. The purpose of this study is to synthesize existing qualitative data of patient, caregiver, and clinician perceptions of palliative care (PC) that influence PC access and use in the US. Methods: A formal qualitative meta-synthesis was completed. The meta-synthesis included 1) a systematic literature search of qualitative studies conducted from 2016 to 2021, 2) a critical appraisal of the included studies, and 3) a reciprocal translation of the study's findings through an interpretive thematic analysis. Results: Seven articles met inclusion criteria resulting in a sample size of patients (n=18), caregivers (n=15), and clinicians (n=118). Three themes emerged with associated subthemes: knowledge and opinions of PC (subthemes of patient and caregiver knowledge and awareness and clinician knowledge and beliefs); care coordination and collaboration (subthemes of communication and trust); and social and structural drivers (subthemes of socioeconomic demographics and time and resources). Conclusions: This qualitative meta-synthesis identifies barriers and facilitators to palliative care access and use. The study findings illuminate the commonalities and differences of the perceptions of the three key stakeholder groups. In addition, this qualitative meta-synthesis reveals the complexities within the US healthcare system, and the challenges patients and their caregivers face accessing PC.

Comparative Analysis of Palliative Care Needs Identified in Inpatient Rehabilitation and Skilled Nursing Facilities by Multidisciplinary Team Members

ObjectiveAssess access to, need for, and beliefs surrounding specialized palliative care (PC). DesignObservational, comparative analysis needs assessment survey. SettingFour inpatient rehabilitation facilities (IRFs) or skilled nursing facilities with long-term care (SNFs/LTC) that provide subacute rehabilitation within 1 tertiary care system. ParticipantsAllied health professionals, physicians, nursing, case managers, social workers, spiritual care (n=198). InterventionsNot applicable. Main Outcome MeasuresFrequency of patient needs, attitudes about current systems, individual beliefs, and barriers to PC. Confidence in management, communicating, and navigating primary PC competencies among clinical pathway employees. ResultsOf 198 respondents, 37% said PC was available at their facility. Those in IRF reported higher frequencies of grief/unmet spiritual needs of patients compared with SNF/LTC (P≤.001). Conversely, SNF/LTC reported higher frequencies of agitation, poor appetite, and end-of-life care (P≤.003). Respondents in SNF/LTC felt more confident managing end-of-life care, explaining what hospice and PC are and appropriateness for referral to each, discussing advance directives, determining appropriate decision-makers, and navigating ethical decisions than in IRFs (P≤.007). SNF/LTC participants reported higher effectiveness of their current system involving PC and ease of hospice transition compared with IRFs (P≤.008). A majority agreed that PC does not take away patient hope, could prevent recurrent hospitalizations, improve symptom management, communication, and patient and family satisfaction. The most common reported barriers to PC consultation were (1) attitudes and beliefs of staff or patients and families, (2) system issues with access, cost, or prognosis communication, and (3) lack of understanding of PC role. ConclusionsA gap exists in PC access in IRF and SNF/LTC despite patient needs and staff beliefs. Future studies should focus on identifying which patients should be referred to PC in the post-acute setting and what outcomes can be used as a guide to meet the needs of this growing area of practice.

Palliative Care Knowledge Following an Interdisciplinary Palliative Care Seminar.

The COVID-19 pandemic created a unique opportunity to evolve an interdisciplinary palliative care seminar (IPC) into a virtual platform. This seminar provides foundational palliative and hospice concepts, introductions into palliative care disciplines, integration of teamwork, and incorporates interdisciplinary student led patient encounters. Traditionally, this experience had been in person, however during the COVID-19 pandemic, healthcare restrictions transitioned the educational delivery to a virtual platform. To assess the knowledge gained from this novel experience, the Palliative Care Knowledge Test (PCKT) was administered before and after the IPC Seminar. A 1-year follow up survey was also administered to evaluate how the IPC Seminar was applicable to the students' clinical experiences and practice. The virtual didactics and virtual student led patient encounters significantly improved learners understanding of palliative and hospice care. This gain of knowledge was noted across undergraduate and graduate programs, which highlights the need for and benefit from foundational concepts. Furthermore, a 1-year follow up survey noted the IPC seminar was applicable to their practices and suggests that this experience will impact future patients. Many of the students practice in rural areas where access to palliative care services is limited or non-existent. This experience exponentially impacts the growth of palliative and hospice care understanding and access to care across the region. Evolving our IPC Seminar has shown to significantly improve knowledge, foster collaboration of student led interdisciplinary teams, and increases capacity to meet the needs of more learners.

Reality of Family Caregiving for Hispanics With Alzheimer's Disease and Related Dementias: A Qualitative Analysis.

Background: Underserved Hispanic patients often experience unmet palliative care (PC) needs, particularly those with noncancer diagnoses such as Alzheimer's disease and related dementias. Most caregivers for Hispanic patients are family relatives who are less likely to use health care and community resources and experience high caregiver burden. We adapted a culturally tailored patient navigator (PN) intervention to provide support and improve PC outcomes for Hispanics with Alzheimer's disease and related dementias and their family caregivers (FCGs). Objectives: To explore Hispanic FCGs' experiences and perceptions of caregiving for a loved one, and how our PN intervention impacted their needs. Design: Qualitative descriptive. Setting/Subjects: FCG participants (n = 10) from our randomized control trial's intervention group were recruited from academic and safety net hospitals and community-based clinics across urban and rural Colorado in the United States. Measurements: Data obtained from individual, semistructured, 30-minute telephone interviews were recorded, transcribed, translated, and analyzed using NVivo and qualitative thematic analyses. Results: Four major themes emerged: Methods of Support, Cultural Expectations and Varying Family Contributions, Lack of Self-Care, and Awareness. Subthemes highlighted differing definitions of "contributing," role resentment, and interpersonal issues. Varying familial expectations underscore FCG strain when the burden of caregiving is not shared. Participants used various coping strategies as necessary support and gained awareness through education, guidance, and referrals to resources. Conclusions: PNs helped FCGs and patients beyond the intervention's scope. Providing support and awareness to FCGs, and incorporating cultural beliefs, may improve PC access to disparate populations and guide future interventions. Clinical Trial Registration Number NCT03181750.

Analysis of demographic characteristics of malignant peripheral nerve sheath tumor in adults: A National Cancer Database study.

e23555 Background: Malignant peripheral nerve sheath tumor (MPNST) is a rare cancer involving the peripheral nerve sheath. Even though the 5-year post-surgical resection survival rate is only 30 to 40%, the epidemiology is not well understood, and looking at trends in demographics could provide insight into factors potentially contributing to poor prognosis. A previous National Cancer Database (NCDB) study investigated demographics in pediatric patients with MPNST. This study analyzed NCDB data to investigate the demographics of adults with MPNST. Methods: Adult patients with a histologic diagnosis of MPNST were retrospectively examined in a cohort analysis using demographic information from the NCDB from 2004 – 2020 (N = 414). Regression analysis was used to describe incidence trends. Demographics (age, sex, race, Hispanic origin, income, insurance status, area of residence, facility type, distance from facility, and Charlson-Deyo score) were explored through descriptive statistics. Palliative care enrollment and mortality rate was examined. Results: 414 patients with age &gt; 18 were identified in the NCDB database with a confirmed diagnosis of MPNST between the years 2004 – 2020. There was a slight increase in incidence of patients diagnosed per year (R2 = 0.254). The average age of diagnosis was 47.0 years (SD = 17.2, range = 19 – 88 years) with more males (51.4%) affected than females (48.6%). The most common primary sites were the retroperitoneum (32.4%), spinal cord (24.4%), and cranial nerves (15.0%). A majority of individuals (82.6%) had Charlson-Deyo comorbidity scores of 0. Individuals most commonly affected were White (79.7%) or Black (14.3%), and non-Hispanic (87.4%). Patients most commonly were in the top quartile of household income (31.6%), had private insurance (53.6%), lived in metropolitan counties (83.8%), and received treatment at an academic/research program (62.2%). Patients lived on average 61.6 miles (SD = 145.7, range = 0.5 – 1454.9) from the facility. The 90-day mortality rate post-surgery was 10.5%. The overwhelming majority of patients did not receive palliative care (94.4%). Conclusions: This is the first NCDB analysis on the demographics of MPNST in adults, providing information that bridges the gap in knowledge. This analysis showed that the retroperitoneum was the most common tumor site, and that the average age of diagnosis was 47 years, consistent with previous reports. Patients were most likely to be White, non-Hispanic, upper quartile income earners, privately insured, treated at an academic facility, and live in metropolitan counties. With the majority of patients receiving no palliative care, it’s possible that palliative care is underutilized and may benefit MPNST patients given the poor prognosis. Additional research on the relationship between socioeconomic status and palliative care access may provide information on this discrepancy.

The association of demographic factors and disease stage on palliative care (PC) referral rates and completion of advanced directives in a lung cancer (LC) patient population.

e24150 Background: Early referral to PC improves quality of life among patients with lung cancer and is associated with improvement in overall survival in patients with stage 4 disease. However, PC utilization remains low. Few studies examined the disparities in PC access and use in real life SCLC and NSCLC patient populations. Objective: To determine the prevalence of PC use among a sample of LC patients and assess the role of PC in facilitating directives and goals of care discussion. Methods: A retrospective cohort analysis was conducted utilizing a randomly selected subset of LC patients treated at the IU Simon Comprehensive Cancer Center between 1/1/18 and 12/31/20. We collected information on advanced directives in the form of designated medical decision maker (Healthcare representative or Healthcare power of attorney) and code status preferences (DNR or POST form). Signed DNR order/POST forms information, demographics (sex, race), LC stage, and LC type were analyzed using descriptive analyses. Chart search identified the dates of first palliative care visit and number of total palliative care visits. Results: Patient characteristics (n = 209): Females 51.7%; White 86.7%; NSCLC 88.5%; stage IV 44.1%. The percentage of total patients who were referred to palliative care was 21.1%. No significant difference in referral rates was found between NSCLC and SCLC patients. 22.3% of male patients and 19.8% of female patients were referred to PC (p = 0.61). No difference was noted in the percentage of white and non-white patients referred to PC (21% and 26.1%, p = 0.97). Palliative referral rates and time from diagnosis to first palliative contact was significantly associated with disease stage, as 27.9% of patients with stage 4 were referred to palliative compared to 15.6% of patients with stages 1-3 (p = 0.036); median time from diagnosis to first palliative contact in stage 4 patients was 355.7 days vs 573.7 days in stages 1-3. Disease stage was associated with the median time from diagnosis to signing POST/DNR forms: 213.6 days in stage 4 patients vs. 409.1 days in stage 1-3 patients. Discussing and signing POST/DNR and HCPOA/HCR forms was associated with palliative care referrals; 53.7% and 63.6% of those referred to palliative signed POST/DNR and HCPOA/HCR forms respectively vs. 11.4% and 16.9% for patients who were never referred to PC. Conclusions: Stage 4 LC was associated with higher likelihood of referral to palliative care than stages 1-3 but PC was underutilized in LC. Demographic factors (race, sex) were not significantly associated with PC referral rates. Patients referred to PC were more likely to address advanced directives than patients who were never offered PC. Strategies to increase palliative care utilization and barriers limiting PC utilization in LC patients need to be further investigated.

End-of-life outcomes after implementation of an embedded, criteria-based palliative care consultation service in inpatient oncology.

12121 Background: Specialty palliative care (PC) improves outcomes for patients with advanced cancer, including quality of life and end-of-life (EOL) care utilization. In 2017, the American Society of Clinical Oncology recommended that patients with advanced cancer see specialty PC within 8 weeks of diagnosis. Despite this, inpatient PC referrals exceed outpatient referrals nationwide. Recognizing the importance of earlier PC access, our cancer center implemented a criteria-based PC consultation service in the inpatient oncology setting. We now report pre/post EOL outcomes from this novel care model. Care model: Our center embedded a “Palliative Oncology” consult team on the oncology floor consisting of 1 physician, 1 nurse practitioner (NP), 2 social workers, and 2 spiritual care providers, all with PC specialization. Admitted patients were screened by a floor nurse or PC NP for 2 referral criteria: 1) advanced/metastatic solid cancer, or 2) moderate/severe symptoms. The inpatient oncology team was informed of patients meeting criteria through daily prompting supported by ongoing education. Referrals remained at discretion of the oncology team rather than triggering automatically. Methods: We identified all cancer center decedents with advanced solid cancers who experienced an admission to the oncology floor before (10/1/19-6/30/20) or after (7/1/20-9/30/21) the new model. Six trained abstractors performed chart review. We compared outcomes between patients who died pre- and post-implementation using a t-test (continuous variables) and χ2 test (categorical variables). Results: Of 820 decedents, 186 died pre-intervention and 634 died post-intervention. During the post-intervention period, more decedents saw inpatient PC (72% vs. 59%, p &lt; .001) and outpatient PC (34% vs. 23%, p &lt; .01). Post-intervention decedents had more inpatient PC visits (mean: 11.1 vs. 8.9, p &lt; .05) and had their first PC visit sooner before death (mean: 159 vs. 76 days, p &lt; .001). During the post-intervention period, fewer decedents had ED (41% vs. 52%, p &lt; 0.05), hospital (57% vs. 71%, p &lt; .001), or ICU encounters (17% vs. 25%, p &lt; .01) in the last 30 days of life. For post-intervention decedents, the proportion referred to hospice remained stable (67% vs. 60%, p = .09), but mean hospice length-of-stay increased (36 vs. 22 days, p &lt; .05), as did the proportion who died at home (50% vs. 41%, p &lt; .05). Fewer post-intervention decedents received systemic cancer therapy in the last 14 days of life (5% vs. 9%, p &lt; .05). There were no between-group differences in age at cancer diagnosis, age at death, gender, race/ethnicity, insurance, or primary cancer. Conclusions: A criteria-based “Palliative Oncology” inpatient consult service was associated with earlier, more intense PC and improved EOL quality outcomes, representing a successful effort to enhance PC integration in the inpatient oncology setting.

Palliative Care Knowledge and Attitudes among Patients with Neurodemyelinating Diseases (P8-6.005)

<h3>Objective:</h3> Evaluate PC knowledge and attitudes of patients with neurodemyelinating diseases. <h3>Background:</h3> Neurodemyelinating diseases lead to functional loss, requiring demanding care with great distress to patients and their caregivers. Palliative care (PC) would benefit these individuals. However, PC inpatient neuro services have only increased from 0.2% to 6% (2005–2014, respectively) without increases in ambulatory settings. <h3>Design/Methods:</h3> A cross-sectional, descriptive design with a convenience sample of 84 patients from 3 neuroimmunology clinics in a Northeastern healthsystem was performed. Participants completed a confidential survey composed of PC Knowledge Scale (PaCKS) and PC Health Information National Trends Survey (HINTS). Murray’s transition theory guided this study, which contextualizes the chronic condition integrating PC services, patient decision-making, communication, and care coordination. Descriptive statistics characterized the sample and the survey responses. <h3>Results:</h3> Most participants were white race (79%), non-Hispanic ethnicity (77%), female gender (69%) and 57% had formal higher education. 82% had multiple sclerosis (MS). A small proportion had advance directives (21%). Approximately 48% to 62% correctly answered PaCKS knowledge questions about PC eligibility criteria (3-items), goals (7-items), and operations (3-items). HINTS focused on PC attitudes and 42% indicating that they never heard of PC. Of the remaining participants, 77% to 87% agreed/strongly agreed with 3-items reflecting PC goal (coping, support, symptom management), whereas, 30% disagreed/strongly disagreed that PC gave patients more time at end-of-life. More than 50% accurately disagreed/strongly disagreed with 4-items that were more aligned with hospice care not PC. Most (67%) felt doctor’s had an obligation to inform patients about PC. <h3>Conclusions:</h3> Many participants were unaware of PC, had knowledge gaps, or inaccurate attitudes about its services and benefits. Results provide a call-to-action for nurses and providers to counsel patients and refer them to PC. Interventional studies are needed to test strategies to improve PC access and related outcomes. <b>Disclosure:</b> Ms. Ben-Zacharia has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Biogen. Ms. Ben-Zacharia has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Genentech. Ms. Ben-Zacharia has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Greenwich Biosciences. Ms. Ben-Zacharia has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for TG Theraputics. The institution of Ms. Ben-Zacharia has received research support from Biogen. The institution of Ms. Ben-Zacharia has received research support from Greenwich Biosciences. Ms. Bartels has nothing to disclose. Helen Brugger has nothing to disclose. Jena Malchiodi has nothing to disclose. Mrs. Carbone has nothing to disclose. Dr. Volandes has nothing to disclose. Francois Bethoux, MD has nothing to disclose.

Surgery: a crucial ally for universal palliative care access

Surgery: a crucial ally for universal palliative care access