Palliative Care Experts Research Articles

Rehabilitation for People with Respiratory Disease and Frailty: An Official American Thoracic Society Workshop Report.

People with respiratory disease have increased risk of developing frailty, which is associated with worse health outcomes. There is growing evidence of the role of rehabilitation in managing frailty in people with respiratory disease. However, several challenges remain regarding optimal methods of identifying frailty and delivering rehabilitation for this population. The aims of this American Thoracic Society workshop were to outline key definitions and concepts around rehabilitation for people with respiratory disease and frailty, synthesize available evidence, and explore how programs may be adapted to align to the needs and experiences of this population. Across two half-day virtual workshops, 20 professionals from diverse disciplines, professions, and countries discussed key developments and identified opportunities for future research, with additional input via online correspondence. Participants highlighted a "frailty rehabilitation paradox" whereby pulmonary rehabilitation can effectively reduce frailty, but programs are challenging for some individuals with frailty to complete. Frailty should not limit access to rehabilitation; instead, the identification of frailty should prompt comprehensive assessment and tailored support, including onward referral for additional specialist input. Exercise prescriptions that explicitly consider symptom burden and comorbidities, integration of additional geriatric or palliative care expertise, and/or preemptive planning for disruptions to participation may support engagement and outcomes. To identify and measure frailty in people with respiratory disease, tools should be selected on the basis of sensitivity, specificity, responsiveness, and feasibility for their intended purpose. Research is required to expand understanding beyond the physical dimensions of frailty and to explore the merits and limitations of telerehabilitation or home-based pulmonary rehabilitation for people with chronic respiratory disease and frailty.

Middle East Cancer Consortium-Development of Palliative Care Services for Cancer Patients.

When patients are diagnosed with cancer, they lose the mode of living they have been accustomed to and face difficulties in coping with the new complexed medical condition. In the case of advanced stages of cancer, patients lose the ability to take an active role in decisions related to priority in treatment modality, decision-making, and planning. In addition, these patients lose the ability of choice-to agree to a certain mode of treatment, who will treat them, and where. Thus, these kinds of decisions are between family members and the treating team. This can happen only when both the formal caregivers and to lesser degree the informal partners are exposed to ongoing educational activities and training by both local experienced palliative care experts and international initiated courses (both frontal and remote). This article provides recommendations needed for an effective strategy at national levels to develop appropriate ways, whereby governmental agencies and non-governmental organizations can promote the establishment of palliative care services at all levels from primary to tertiary in each individual country. The basis for the above will rely on the experience that was gained through the application of palliative care principles.

Helpfulness of Question Prompt Sheet for Patient-Physician Communication Among Patients With Advanced Cancer

There are few robust evaluations of disease-specific question prompt sheets (QPS) in patient-physician communication among patients with advanced cancer. To compare the patient perception of helpfulness, global evaluation, and preference for the QPS vs a general information sheet (GIS), and to examine the effect of the QPS on participants' anxiety, participants' speaking time, number of questions asked, and length of the clinical encounter. This controlled, double-blind randomized clinical trial was conducted at an outpatient palliative and supportive care clinic in a cancer center in the US. Eligible patients were 18 years or older, had a cancer diagnosis, and were undergoing their first outpatient consultation visit with a palliative care physician from September 1, 2017, to May 31, 2019. Data analysis used a modified intention-to-treat design. Data were analyzed from May 18 to June 27, 2022. QPS, a 25-item list of questions developed by expert palliative care clinicians using a Delphi process and tested among ambulatory advanced cancer patients. The control was GIS, generic information material given routinely to patients seen at the supportive care clinic. The main outcome was patient perception of helpfulness. Secondary outcomes included global evaluation and preference of QPS compared with GIS immediately after the encounter. A total of 130 patients (mean [SD] age, 58.6 [13.3] years; 79 [60.8%] female) were randomized to receive either QPS (67 patients [51.5%]) or GIS (63 patients [48.5%]). Patients considered QPS and GIS equally helpful, with no statistically significant difference (mean [SD] helpfulness score, 7.2 [2.3] points vs 7.1 [2.7] points; P = .79). The QPS group, compared with the GIS group, had a higher global positive view of the material (mean [SD] global perception score, 7.1 [1.3] vs 6.5 [1.7]; P = .03) and felt it prompted them more to generate new questions (mean [SD] rating, 7.0 [2.9] vs 5.3 [3.5]; P = .005). Of 47 patients asked their preference between the items, more participants preferred the QPS to the GIS in communicating with their physicians (24 patients [51.1%] vs 7 patients [14.9%]; P = .01) at the 4-week follow-up. No significant differences between the QPS and GIS groups were observed regarding participant anxiety, speaking time, number of questions asked, or consultation length (eg, mean [SD] anxiety rating, 2.3 [3.7] vs 1.6 [2.7]; P = .19). In this randomized clinical trial, participants perceived both QPS and GIS as equally helpful, but they had a more positive global view of and preferred the QPS. QPS facilitated generation of new questions without increasing patient anxiety nor prolonging the consultation. The findings provide support for increased adoption and integration of QPS into routine oncologic care. ClinicalTrials.gov Identifier: NCT03287492.

‘The palliative care ambulance’: A qualitative study of patient and caregiver perspectives of an ambulance service

Background: The need for home-based palliative care is accelerating internationally. At the same time, health systems face increased complexity, funding constraints and global shortages in the healthcare workforce. As such, ambulance services are increasingly tasked with providing palliative care. Where paramedics with additional training in palliative care have been integrated into models of care, evaluations have been largely positive. Studies of patient and family carer experiences of paramedic involvement, however, are limited. Aim: To explore patient and family caregiver experiences of paramedics’ contribution to palliative care at home. Design: Qualitative interview study. We analysed data within a social constructionist epistemology using reflexive thematic analysis. Setting/participants: Participants receiving specialist palliative care in the community of a metropolitan city of Australia who requested an ambulance between January and August 2018, inclusive. Results: Participants considered paramedics with expertise and experience in palliative care as an extension of the specialist community palliative care team and held them in high regard. Participants highlighted the importance of: critical palliative care at home and a timely, responsive approach; person-centred paramedics; as well as safety and security. Conclusion: Patients and carers feel safe and secure when they know that highly responsive skilled professional support is available when an unexpected problem or sudden change arises, especially out-of-hours, and that support is delivered in an empathic and person-centred manner.

The Third Annual US Celebration of World Hospice and Palliative Care Day: A virtual coming together to unify the global palliative care community.

On 3-4 October 2022, the Memorial Sloan Kettering Cancer Center Supportive Care Service and Department of Psychiatry and Behavioral Sciences hosted the Third Annual United States (US) Celebration of World Hospice and Palliative Care Day (WHPCD). The purpose of this article is to reflect on the event within the broader context of the international WHPCD theme: "healing hearts and communities." We describe lessons learned in anticipation of the fourth annual conference to be held on 3-4 October 2023. Description of the third annual event, conference planning team reflection, and attendee evaluation responses. The Worldwide Hospice Palliative Care Alliance launched WHPCD in 2005 as an annual unified day of action to celebrate and support hospice and palliative care globally. Since 2020, the conference has attracted an increasing number of attendees from around the world. Two primary aims continue to guide the event: community building and wisdom sharing. Fifty-two interprofessional palliative care experts, advocates, patients, and caregivers provided 13 unique interactive sessions. Four hundred and fifty-eight multidisciplinary registrants from at least 17 countries joined the program. Free registration for colleagues in low- and middle-income countries, students and trainees, and individuals experiencing financial hardship remains a cornerstone of inclusion and equitable access to the event. The US WHPCD celebration provides a virtual platform that offers opportunities for scientific dissemination and collective reflection on hospice and palliative care delivery amid significant local and global changes in clinical practice, research, policy and advocacy, and population health. We remain committed to ensuring an internationally relevant, culturally diverse, and multidisciplinary agenda that will continue to draw increased participation worldwide during future annual events.

Doing palliative care research on hematologic cancer patients: A realist synthesis of literature and experts' opinion on what works, for whom and in what circumstances.

Research in PC (Palliative Care) is frequently challenging for patient's frailty, study design, professional misconceptions, and so on. Little is known about specificity in PC research on Hematologic cancer patients, who have distinct characteristics that might influence the enrollment process. What works, how and for whom, in increasing enrollment in studies in PC on patients with hematologic malignancies? Realist review: a qualitative review whose goal is to identify and explain the interaction between Contexts, Mechanisms, and Outcomes (CMOs). The theory was informed by a narrative, theory-based literature research, including an initialsystematic research, and the addition of papers suggested by experts of the field. We also used 7 interviews with experts in PC about patients with hematologic malignancies research and our own experience from a PC pilot study on patients with hematologic malignancies to refine the initial theory. In our initial theory we hypothesize that: - Access to palliative care could be beneficial to hematologic patients, even in early stages - Hematologists tend to under-use palliative care services in general, due to unpredictable disease trajectories and cultural barriers. - These factors may negatively impact the patients' enrollment in PC researchWe included secondary literature as narrative reviews, if they presented interesting propositions useful for our theoretical construction. 23 papers met our inclusion criteria.We also searched for relevant CMOs impacting referral in palliative care, and we selected a list of CMOs that could be relevant also in hematology. We accordingly theorized a group of interventions that could increase the enrollment in PC research and presented them using "social exchange theory" (SET) as a theoretical framework.Prominent researchers in PC in hematologic malignancies were interviewed on their opinion on our results, and additional CMOs. Before conducting research in PC on patients with hematologic malignancies, it's probably advisable to assess: - The perception of the different actors (physicians, nurses, other professionals involved), in particular the hematologists, in terms of pros and cons of referral to PC and enrollment in PC trials - The existing relationship between PC and the Hematology departmentAccordingly, it's possible to tailor different interventions on the various actors and choose a model of trial to increase the perception of benefits from PC and, consequently, enrollment.

How to Advance Palliative Care Research in South America? Findings From a Delphi Study.

Progress in palliative care (PC) necessarily involves scientific development. However, research conducted in South America (SA) needs to be improved. To develop a set of recommendations to advance PC research in SA. Eighteen international PC experts participated in a Delphi study. In round one, items were developed (open-ended questions); in round two, each expert scored the importance of each item (from 0 to 10); in round three, they selected the 20 most relevant items. Throughout the rounds, the five main priority themes for research in SA were defined. In Round three, consensus was defined as an agreement of ≥75%. 60 potential suggestions for overcoming research barriers in PC were developed in round one. Also in Round one, 88.2% (15 of 17) of the experts agreed to define a priority research agenda. In Round two, the 36 most relevant suggestions were defined and a new one added. Potential research priorities were investigated (open-ended). In Round three, from the 37 items, 10 were considered the most important. Regarding research priorities, symptom control, PC in primary care, public policies, education and prognosis were defined as the most relevant. Potential strategies to improve scientific research on PC in SA were defined, including stimulating the formation of collaborative research networks, offering courses and workshops on research, structuring centers with infrastructure resources and trained researchers, and lobbying governmental organizations to convince about the importance of palliative care. In addition, priority research topics were identified in the region.

Translation and cross-cultural adaptation of the Integrated Palliative Care Outcome Scale in Hindi: Toward capturing palliative needs and concerns in Hindi speaking patients

Background: Culturally relevant patient-centered outcomes tools are needed to identify the needs of patients and to assess their palliative care concerns. Aim: To translate and culturally adapt the Integrated Palliative Care Outcome Scale (IPOS) into Hindi. Design: The study applied a standardized methodology entailing six phases for translation and content validation: equivalence setting through a three-step process; forward translation; blind backward translation; expert review by a panel of the POS team; cognitive de-briefing with patients; and proof-reading of the final tool. All interviews and focus groups were audio-recorded, transcribed and analyzed using content analysis. Setting/participants: (1) Healthcare professionals including doctors, nurses, psychologists, counselors, and volunteers working in Indian palliative care settings with expertise in both English and Hindi languages; (2) Hindi speaking patients diagnosed with cancer who were receiving palliative care in community settings. Caregivers, palliative care experts, and language translators contributed to the translation procedure. Results: Phrases like nausea, poor appetite, drowsiness, and depression were difficult to translate into Hindi. Response categories “occasional” and “sometimes” were overlapping. All items, instructions and response categories were simple to understand. A visual thermometer is a unique feature of Hindi IPOS to facilitate responses from less educated patients. Conclusion: Hindi IPOS has face and content validity for use in clinical practice and research. The Hindi IPOS has implications beyond Indian palliative care settings. Millions of Hindi speakers can now respond to IPOS, and have a tool for communicating their palliative care needs in their mother tongue to inform patient-centered care.

Top Ten Tips Palliative Care Clinicians Should Know About Improving Partnerships with Emergency Medical Services.

Emergency medical services (EMS) clinicians increasingly encounter seriously ill patients and their caregivers in times of distress. When crises arise or care coordination falls short, these high-stakes interactions highlight opportunities to improve care experience and outcomes. Efforts must address wide educational gaps, absence of specialized care protocols, and systematic fragmentation leading to hyperlocal practice. The authors represent cross-sectional expertise in palliative care and EMS. This article describes unmet needs at the EMS-palliative interface, challenges with collaboration, and where directional progress exists.

Development of Objectives to Inform a National Standardized Primary Palliative Care Curriculum for Health Professions Students.

Introduction: Despite recent educational advances, the need for a national standardized primary palliative care curriculum for health professions students remains evident. Methods: An interprofessional leadership team developed a set of core learning objectives built on previously published competencies. A survey was then sent to palliative care experts for feedback and consensus. Results: Twenty-eight of 31 objectives met a 75% consensus threshold, 2 were combined with others, and 12 were refined based on survey feedback. Discussion: With interprofessional input at all stages, we finalized a comprehensive list of 26 learning objectives for a primary palliative care curriculum targeting health professions students. These objectives will be widely available through an online course but can also be adopted for use by individual educators across health professions institutions. These objectives and related curriculum are critical to producing practice-ready clinicians who are prepared to care for the burgeoning population of seriously ill patients.

Perception and Attitude towards Passive Euthanasia among Doctors in a Tertiary Care Hospital in Northeast India: A Cross-sectional Study

Introduction: The medical fraternity now has more control over the processes of life and death due to advances in medical technology and equipment. Euthanasia has been debated around the world for more than half a century and it continues to raise important questions in medical ethics, moral theology, civil rights and liberty. Physicians’ attitudes to life and death emerge to relate their end-of-life decision-making, although usually carried out at the request of ailing person. Physicians’ contemplation on euthanasia is a vital building block in the path towards any change, in the euthanasia situation in a country. Aim: To determine perception and attitude towards passive euthanasia among doctors in Regional Institute of Medical Sciences, Manipur, India and to evaluate the association between attitude and variables favourable to passive euthanasia. Materials and Methods: A cross-sectional survey in the Regional Institute of Medical Sciences (tertiary care hospital), Manipur, India, between October 2018 and September 2020, in Northeast was carried out among 673 doctors. A selfadministered questionnaire was designed and approved by three specialists with expertise in palliative care and medical ethics. The questionnaire had a total of 46 questions in English language, of which 15 questions were on socio-demographic profile, 13 were attitude questions and 18 were questions on perception towards passive euthanasia. Attitude questions were scored using 5-point Likert scale from strongly disagree (-2) to strongly agree (+2). Total attitude score ranges from -26 to +26. Score above zero was considered to have positive attitude and vice-versa. There was no scoring to determine perception towards euthanasia. The questionnaires were given to the doctors and postgraduate trainees of clinical and non clinical specialities in a tertiary care hospital in North Eastern India during their work hours. Data were summarised using descriptive statistics. Chi-square test was used to assess factors favouring attitudes toward passive euthanasia. Results: Age of the respondents ranged from 24 years to 63 years, with a mean age of 37.1±10.7 years and mean duration of experience was eight years. Out of 577 respondents, 368 (63.8%) were postgraduate trainees and 209 (36.2%) were doctors. Majority (463, 80.2%) of the respondents had positive attitude, 97 (16.9%) had negative attitude and 17 (2.9%) had neutral attitude. Total 543 (94.1%) respondents agreed that declaration from patient/family members must be obtained before the act of passive euthanasia. Also, the quality of life as viewed by the patient himself (452, 78.3%) and humanitarian basis (372, 64.4%) were the important factors in influencing decision making regarding passive euthanasia on a terminally ill patient. There was no significant association between sex, religion, specialisation, Intensive Care Unit (ICU) experience and attitude towards passive euthanasia. Conclusion: Majority of the respondents had positive attitude towards passive euthanasia in the face of intractable suffering and terminal illness. Hastened death looks easier to the patients and family because of physical suffering and financial burdens they are subjected to. The doctors got request for euthanasia by the patients and relatives which reflects the public awareness on euthanasia.

Layers of Loss: A Scoping Review and Taxonomy of HD Caregivers' Spiritual Suffering, Grief/Loss and Coping Strategies.

Huntington's disease (HD), an incurable, multi-generational, autosomal dominant disorder, creating unique challenges and a myriad of spiritually-related stressors in those affected and their familial caregivers. Spiritual suffering, experiences of grief/loss, and coping strategies have not been systematically studied in HD caregivers. To comprehensively define spiritual suffering, grief/loss, and coping strategies used by HD caregivers. A PRISMA-ScR scoping literature review was conducted. Data from included research articles were organized thematically using induction and open coding. A grounded, deductive approach was used to delineate a demarcated taxonomy of themes, which encompasses all three over-arching domains. Four reviewers, employing a modified Delphi approach, ascertained which themes were demonstrated by research participants in each study. 36 of 583 articles met the review criteria; none were published in the palliative care literature. Investigations primarily focused on intrapersonal (self-image) distress and existential angst; only rarely looked deeper into divine/transpersonal suffering, disrupted religious relationships, or meaning distress. HD caregivers experience profound grief/loss, expressed as disenfranchised grief that is associated with the ambiguous loss of their loved one, loss of family structure, social connectedness, and personal losses. Half of the studies reported maladaptive HD caregiver coping strategies-characterized by dysfunctional escape schemes; in contrast, transcendent/creative strategies were often unexplored. HD caregivers experience prolonged grief and other forms of spiritual suffering as they progressively lose their loved ones and disruption to their own lives. With an improved assessment tool, teams with spiritual and palliative care experts will better be able to support HD family caregivers.

Establishment of the first Australian public and health-professional palliative care advice service: exploring caller needs and gaps in care.

This study explores and describes the state-wide needs of the first 1000 calls to the newly established Victorian Palliative Care Advice Service (PCAS). A retrospective analysis investigated calls from the Victorian general public (n = 618 calls) and healthcare professionals (n = 382 calls) to PCAS between 26 May 2020 and 24 October 2022. Caller demographics, disease type, reason for call, and perceived utility of service were described. Most calls were from members of the public (62%) and related to malignant conditions (41%). Regional/rural clients comprised 45% of all calls to the service, of which half (50%) were health professionals seeking advice on symptom management and medication. One-third (29.3%) of all calls from health professionals were escalated to a palliative care medical consultant. PCAS prevented calls to emergency services in 10% of cases, and 82% of callers reported their issue was 'very much' or 'completely' addressed by PCAS. PCAS was shown to be frequently used by the public and healthcare professionals supporting patients with advanced, life-limiting illnesses. The service provided a solution without requiring complex technology, delivering a rapid connection for consumers with specialist palliative care expertise that might otherwise be unavailable, particularly in regional areas.

EARLY OUTCOMES OF A NATIONAL CONSORTIUM TO ADVANCE FAMILY CAREGIVERS IN NURSING EDUCATION

Abstract Family caregivers (FCGs) hold primary responsibility in caring for people with chronic illness often with little training and insufficient resources Standardized guidance for supporting FCGs currently does not exist. Given this fact, it is an urgent call to healthcare professionals, particularly nurses as the key members of the healthcare team, to promote education for FCGs. In April 2022, experts in the field of family caregiving from UC Davis and University of Utah schools of nursing, convened educators and champions of FCGs from across the country and formed the Family Caregiving Nursing Education Consortium to advance the inclusion of FCGs in nursing education in order to address the lack of standardized nursing competencies for family caregiving. The consortium consists of members from nine diverse universities representing member expertise in pediatrics, geriatrics, palliative care, disabilities, mental health, and underserved communities in order to address a broader range of health issues through the lifespan. Preliminary data were reviewed and identified as a framework, including Family Caregiver Competencies for Interprofessional Education (4 domains) developed by the school of nursing at UC Davis and the AACN Essentials (10 competency categories). Members mapped the family caregiving competencies to the AACN Essentials (2021) during monthly meetings. Though current work presented an early-stage outcome, it marched through crucial steps, including institutional environmental scans, needs assessments, and toolkit development, as building blocks that not only advanced the inclusion of family caregiving education in nursing curricula but also provided foundation to guide the next stage of work.

The Effect of a Multidisciplinary Blended Learning Program on Palliative Care Knowledge for Health Care Professionals Involved in the Care for People with Parkinson's Disease.

Parkinson's disease (PD) is an increasingly prevalent and progressive degenerative disease. Palliative care for PD should be integrated into the routine care for people with PD. However, PD health care professionals typically lack knowledge of palliative care, highlighting the necessity of educational programs in this field. To determine the effectiveness of a multidisciplinary blended learning program for health care professionals specialized in PD in the Netherlands. We used a pre-posttest intervention design. The intervention consisted of an e-learning in combination with an online network meeting in which the participating health care professionals discussed palliative care for PD with specialists from the field of palliative care. Outcome variables included self-rated level of knowledge (scale 1-10), familiarity with specialized palliative care services (5-point Likert scale) and the validated End-of-Life Professional Caregiver Survey (EPCS). A total of 1029 participants from sixteen different disciplines, all active in the care for people with PD, with a mean age of 45 years and 13 years of working experience, followed the blended learning program. Self-rated level of knowledge improved from 4.75 to 5.72 (0.96; p < 0.001; 95% CI change = [0.85 . . . 1.08]. Familiarity with palliative care services also increased by 1.06 (from 1.85 to 2.90; p=<0.001; 95% CI change = [1.00 . . . 1.12]). A blended learning program can improve self-rated knowledge about palliative care and its services. Such programs might be a first step towards optimal integration of palliative care expertise and services within PD-care.

Providing Palliative Care to Patients Throughout the State of Indiana from a Centralized Virtual Palliative Care Hub.

Access to palliative care clinicians is a limited resource. Expanding the reach of existing palliative care expertise by utilizing virtual care is one strategy to reach areas that lack access. We delivered virtual services through a centralized hub across multiple health settings and tracked outcomes. Through a centralized virtual palliative care hub based in an urban academic health center, access to specialty palliative care was offered across homes, critical access hospitals (CAHs), and extended care facilities (ECFs) in the state of Indiana. Webpage-based platforms were used, and hardware included a cart on wheels for rural hospital sites. Data specific to palliative care were monitored for each encounter. Over one year, 372 patients were seen for virtual palliative care consultations, of whom 275 (73.9%) were seen in the outpatient setting (where the patient was at home or in an ECF) and 97 (26.1%) were inpatient visits performed in CAHs. Visits occurred with patients from almost all counties in Indiana. Advance directives were established for 286 (76.9%) patients seen, and 107 (28.8%) patients were referred to hospice. Specialty palliative care is a limited resource that has been further constrained by the COVID-19 pandemic. Our experience demonstrates that centralized virtual hub-based palliative care can be leveraged to provide effective, patient-centered, and compassionate care in regions without a specialist and has the potential to improve access to specialty palliative care.

Clinical Practice Guidelines on Palliative Sedation Around the World: A Systematic Review.

Objective: The principal aim of this study was to identify, systematically and transparently, clinical practice guidelines (CPGs) on palliative sedation from around the world. Methods: A systematic search was performed using 5 databases, grey literature search tools, citation tracking, and contact with palliative care experts across the world. Current CPGs accredited by an international, national, or regional authority, published in English, German, French, or Italian, were subjected to content analysis. Results: In total, 35 CPGs from 14 countries and 1 international CPG were included in the analysis. The CPGs had diverse formal characteristics. Their thematic scope was difficult to analyze and compare because of differences in the terms and definitions of palliative sedation in those texts. We identified 3 main situations: (1) CPGs with a fully explicit thematic scope; (2) CPGs with a partially explicit thematic scope; and (3) CPGs without an explicit thematic scope. Several CPGs explicitly stated what forms of sedation were excluded from the text. However, this presentation was often confusing. Conclusion: Our review provides several pieces of information that could guide international reflections in this field, and be used to develop or update CPGs at all levels. Efforts should be made to clarify the thematic scope of each CPG on palliative sedation, in order to generate an understanding of the forms of this therapy addressed in the text.

Sara Booth: palliative care consultant and expert on breathlessness

Sara Booth: palliative care consultant and expert on breathlessness

Can You Hear Us Now? Equity in Global Advocacy for Palliative Care.

Evidence-based advocacy underpins the sustainable delivery of quality, publicly guaranteed, and universally available palliative care. More than 60 million people in low- and middle-income countries (LMICs) have no or extremely limited access to either palliative care services or essential palliative care medicines (e.g., opioids) on the World Health Organization Model List. Indeed, only 12% of the global palliative care need is currently being met. Palliative care advocacy works to bring this global public health inequity to light. Despite their expertise, palliative care practitioners in LMICs are rarely invited to health policymaking tables - even in their own countries - and are underrepresented in the academic literature produced largely in the high-income world. In this paper, palliative care experts from Bangladesh, Colombia, Egypt, Sudan, Uganda, and Zambia affiliated with the International Association for Hospice &amp; Palliative Care Advocacy Focal Point Program articulate the urgent need for evidence-based advocacy, focusing on significant barriers such as urban/rural divides, cancer-centeredness, service delivery gaps, opioid formulary limitations, public policy, and education deficits. Their advocacy is situated in the context of an emerging global health narrative that stipulates palliative care provision as an ethical obligation of all health systems. To support advocacy efforts, palliative care evaluation and indicator data should assess the extent to which LMIC practitioners lead and participate in global and regional advocacy. This goal entails investment in transnational advocacy initiatives, research investments in palliative care access and cost-effective models in LMICs, and capacity building for a global community of practice to capture the attention of policymakers at all levels of health system governance.

Meaningful measures for advanced cancer: Building a measure set to promote goal-concordant care.

210 Background: Research suggests that patients with advanced cancer do not reliably receive care consistent with their goals and values, indicating an important gap. While experts promote measurement of ‘goal concordant care’ this construct is difficult to measure due to definitional and data complexity. The 10 cancer hospitals of the Alliance of Dedicated Cancer Centers (ADCC) have collaboratively implemented interventions to improve goal concordant care and create a wholistic measure set through the Improving Goal Concordant Care (IGCC) Initiative. Methods: ADCC launched the 3 year initiative in 2020. Oncology, palliative care and quality experts completed conceptual work prior to launch including identifying core intervention components, specific aims and potential measures. Following an environmental scan, a workgroup brainstormed relevant measures, then applied feasibility and priority ratings. Patient/family advisors provided guidance. In 2020, a measure panel initiated technical development, using existing specifications as feasible. Claims-based measures were modeled. Following alpha testing, quarterly data submission of selected measures began in 2022. Results: During the conceptual phase, the workgroup identified 60 measures. 19 measures remained following the prioritization and feasibility rating; 14 have been tested and implemented to date (Table). A stakeholder (e.g., patients, physicians, administrators) assessment regarding each measure’s value in assessing quality and usefulness for improvement is in progress. Conclusions: In support of IGCC, we created a set of measures to assess progress towards achieving goal-concordant care. This measure set is intended to be useful in any cancer setting.[Table: see text]