Equitable access to palliative care remains an important goal for many low- and middle-income countries working to expand health care systems. This scoping review examines the development and current state of palliative care in Bolivia through the framework of the World Health Organization's (WHO) pillars of public health strategy: health care policy, medicine availability, education, implementation, and research. Following the Preferred Reporting Items for Systematic Reviews and Meta-Analysis guidelines, six electronic databases were systematically searched from inception through September 2023. Studies were eligible if they specifically addressed palliative care in Bolivia. Data were abstracted and thematically synthesized according to the WHO pillars. Of 645 records identified, 507 titles and abstracts were screened, 96 underwent full-text review, and 34 studies met inclusion criteria. Most publications were descriptive or narrative in nature, with limited empirical research. Health care policy and implementation were the most frequently addressed pillars, while research was the least represented. Findings demonstrate expansion of palliative care programs since 2008 alongside gradual improvements in universal health coverage; however, barriers identified include opioid availability and accessibility, geographic distribution of care, standardized training and education, and policy development. Although palliative care in Bolivia has advanced over the past two decades, gaps remain across all WHO pillars. Ongoing and future initiatives are helping to strengthen education, policy, and research, building on recent momentum to ensure equitable and sustainable access to palliative care for all Bolivians.

CONTEXT:Emergency Medicine (EM) has played a foundational role in Hospice and Palliative Medicine (HPM) since the subspecialty's formal recognition. Yet, little is known about the growth of EM-trained physicians pursuing HPM fellowship. OBJECTIVES:To quantify trends in EM applicants and successful fellowship match outcomes to HPM fellowships from 2016 to 2023 and compare them with other primary specialties. METHODS:A retrospective analysis of National Resident Matching Program (NRMP) data was conducted for all HPM fellowship applicants from 2016 to 2023. Trends in active applicants, successful match rates, and year-over-year growth were evaluated by specialty. RESULTS:From 2016 to 2023, EM applicants to HPM fellowships increased by 400%, from 11 to 55 applicants, far outpacing overall growth across specialties (89%). Successful EM match rates remained high (average 85.4%), peaking at 92.9% in 2022. EM also showed the fastest growth in matched applicants, with an average annual increase of 27.2%. CONCLUSION:EM is one of the fastest-growing sources of applicants to HPM fellowships, reflecting rising recognition of palliative care's value in acute care. This trend has important implications for workforce planning, specialty integration, and the future of dual-trained EM-HPM clinicians.

Outcomes 1. Participants will demonstrate understanding of the importance of culturally relevant end-of-life outcome measurement tools for assessment of end-of-life care.2. Participants will recognize that bereaved caregivers use multiple perspectives and judgment strategies in assessing the quality of their loved ones’ dying experience. Key Message The revised global version of the Quality of Dying and Death Questionnaire (QODD-RGV) was evaluated for content validity through cognitive interviews with bereaved caregivers. Findings confirmed that all items were understandable and relevant. All caregivers used various perspectives and faced some confusion about the time frame instructions, leading to revisions. Abstract Improvement in end-of-life care requires measurement of the quality of dying and death, but measures lack cross-cultural validity. We therefore revised the Quality of Dying and Death Questionnaire (QODD) (1, 2) to create the QODD-Revised Global Version (QODD-RGV) questionnaire (3). Objectives The aim of this study was to evaluate the content validity of the QODD-RGV. Methods Bereaved caregivers of patients who died in inpatient hospice residences in Canada and United States were recruited four-six months after death. As proxy raters, these caregivers completed the QODD-RGV, a 26-item measure assessing domains that include symptoms, preferences for care, and social support. They then participated in cognitive interviews verbalizing their thought process following each item response. Interview transcripts were independently coded by two research team members followed by consensus coding. Qualitative content analysis was used for data analysis, focusing on the sources participants relied on, their judgement strategies, and difficulties in responding to individual items. Results Eighteen bereaved caregivers participated in the cognitive interview protocol. The information retrieved was most commonly obtained from the perspective of the patient or the caregiver. The judgment strategies used most often were comparison to “a hoped for or ideal dying experience,” followed by “a state of distress/no distress.” All respondents used multiple standards of comparison. Response difficulty was most frequently due to “no communication with the patient regarding that aspect of the experience.” No single question was confusing to participants, but ambiguity regarding the instructions about the time frame to be evaluated led to its revision. Conclusions The QODD-RGV items were all understandable to participants and considered relevant by them, supporting the content validity of the QODD-RGV. Caregivers considered multiple perspectives and judgment strategies in their ratings, highlighting the complexity of the construct of the quality of dying and death and of proxy ratings. References 1. Curtis JR, Patrick DL, Engelberg RA, et al. A Measure of the Quality of Dying and Death. Journal of Pain and Symptom Management 2002;24(1):17–31; doi: 10.1016/S0885-3924(02)00419-0. 2. Hales S, Zimmermann C, Rodin G. Review: The quality of dying and death: a systematic review of measures. Palliat Med 2010;24(2):127–144; doi: 10.1177/0269216309351783. 3. An E, Tilly A, Mah K, et al. Protocol for the development and multisite validation of the Quality of Dying and Death-Revised Global Version scale. BMJ Open 2022;12(7):e064508; doi: 10.1136/bmjopen-2022-064508.

Outcomes1. Utilizing a case-based approach, participants will self-report the ability to analyze and address the complex practical needs of the seriously ill or dying child with an incarcerated parent.2. Upon successful completion participants will be able to analyze and address the complex social and ethical considerations faced when a sick child dies and their incarcerated parent is not granted privileges to be present at the end of their life.Key MessageWe describe an end of life case of a pediatric patient who's mother was incarcerated during her hospitalization and ultimately her death in our pediatric ICU. This case illustrates a number of important ethical and practical considerations when caring for a child with an incarcerated parent.AbstractPer the National Institute of Corrections, one in fifty children in the United States has a parent in prison. This case illustrates several important ethical and practical considerations when providing serious illness and end of life care for a child with an incarcerated parent.A 5-year-old female, previously healthy, presented after being found unresponsive at home with work-up revealing liver laceration, adrenal hemorrhage, bruising, and a subdural hematoma requiring emergent decompressive hemicraniectomy complicated by likely ruptured AVM causing edema requiring frontal and left temporal lobectomy. Course complicated by hemodynamic instability, adrenal insufficiency, and waxing and waning neurologic exam. The patient clinically worsened and subsequent imaging including functional MRI revealed very severe brain injury. Family was informed that if the patient survived, she would most likely be completely dependent on care for the remainder of her life. Unfortunately, the patient's mother was incarcerated prior to her admission. Our pediatric palliative care team advocated for and was able to include her in decision making via an electronic tablet and the family ultimately decided on compassionate extubation. Despite our efforts, the patient's mother was not granted compassionate release or a temporary release in time to be with the patient at her time of death, ultimately joining via electronic tablet, which raised several ethical considerations for the teams caring for her.This case highlights the importance of including incarcerated parents in medical decision making and end of life care for their children and well as touches on the potential for additionally complex grief for the incarcerated parent whose child dies. Accommodations are often made for dying inmates but unfortunately, in this case, not made for the parent of a dying child. More advocacy work may be needed to promote such accommodations.KeywordsDiversity, Equity, Inclusion, Belonging, JusticeEthical / Legal Aspects of Care

PURPOSEDespite advances in palliative care in Uganda, there has been relatively little recent patient-centered research investigating end-of-life outcomes in this region. We assessed the quality of dying and death of patients with cancer in hospice care in Uganda.METHODSBereaved caregivers of patients who received hospice care in Uganda and died 2-12 months earlier (N = 201) completed the Quality of Dying and Death Questionnaire, which includes 31 items and single-item ratings of overall quality of dying and moment of death, and the FAMCARE measure of family satisfaction with cancer care.RESULTSCaregivers reported low-intermediate overall quality of dying (mean [M] standard deviation [SD], 3.25 [2.98]) and overall quality of moment of death (M [SD], 3.59 [3.51]), with 47.0% of the ratings of these two outcomes in the poor range, but the mean family satisfaction with care was high (M [SD], 77.75 [10.26]). Most Quality of Dying and Death Questionnaire items (74.2%) were rated within the intermediate range. Items rated within the good range were religious-spiritual, interpersonal, and personal facets; two items within the poor range reflected physical functioning. Overall quality of dying was most strongly correlated with pain control (Spearman's rho [rs] = 0.45, P < .001), and overall quality of moment of death with state of consciousness before death and being unafraid of dying (rs = 0.42, P < .001). The FAMCARE score was not correlated with overall quality of dying or moment of death (P = .576-.813). Only one FAMCARE item, information on managing patient's pain, was correlated with overall quality of moment of death (rs = –0.19, P = .008).CONCLUSIONEnd-of-life care in hospices in Uganda requires further improvement, particularly with regard to symptom control. Patient-centered data could bolster advocacy efforts to support quality improvement of palliative care in this and other countries.

Background Despite the reduction in global under-5 mortality over the last decade, childhood deaths remain high. To combat this, there has been a shift in focus from disease-specific interventions to use of healthcare data for resource allocation, evaluation of performance and impact, and accountability. This is a descriptive analysis of data derived from a prospective cohort study describing paediatric admissions to a tertiary referral hospital in Malawi for the purpose of process evaluation and quality improvement.Methods Using a REDCap database, we collected data for patients admitted acutely to Kamuzu Central Hospital, a tertiary referral centre in the central region. Data were collected from 17 123 paediatric inpatients from 2017 to 2020.Results Approximately 6% of patients presented with either two or more danger signs or severely abnormal vital signs. Infants less than 6 months, who had the highest mortality rate, were also the most critically ill on arrival to the hospital. Sepsis was diagnosed in about 20% of children across all age groups. Protocols for the management of high-volume, lower-acuity conditions such as uncomplicated malaria and pneumonia were generally well adhered to, but there was a low rate of completion for labs, radiology studies and subspecialty consultations required to provide care for high acuity or complex conditions. The overall mortality rate was 4%, and 60% of deaths occurred within the first 48 hours of admission.Conclusion Our data highlight the need to improve the quality of care provided at this tertiary-level centre by focusing on the initial stabilisation of high-acuity patients and augmenting resources to provide comprehensive care. This may include capacity building through the training of specialists, implementation of clinical processes, provision of specialised equipment and increasing access to and reliability of ancillary services. Data collection, analysis and routine use in policy and decision-making must be a pillar on which improvement is built.

Background: Oncology teams are encouraged to include patient preferences and goals of care in determining appropriate treatment courses. There are no existing data from Malawi exploring decision-making preferences among cancer patients.Methods: In the oncology clinic in Lilongwe, Malawi, 50 patients were surveyed for decision making.Results: Most participants (70%, n = 35) preferred to engage in shared decision making regarding cancer treatment. About half (52%, n = 24) did not feel that their medical team involved them in decision making and 64% (n = 32) felt that they were never or only sometimes listened to by the medical team. Nearly all (94%, n = 47) preferred to have their medical team inform them how likely treatments are to lead to cure.Conclusions: Shared decision making was the preferred mode of treatment decision making by the majority of the surveyed cancer patients in Malawi. Cancer patients in Malawi may have similar preferences to cancer patients in other low-resource settings regarding decision making and communication.

Sun, University of North Carolina.

Background Universal access to palliative care remains a distant goal in many low resource settings, despite the growing evidence of its benefits. The unmet need for palliative care is evident in Africa, but great strides in palliative care development have occurred in several African countries. Located in sub-Saharan Africa, Malawi has been regarded as an exemplar of progress in this area that is achievable in a low resource region. This scoping review examined the literature on the development and state of palliative care in Malawi according to the pillars of health care policy, medicine availability, education, implementation, research activity, and vitality of professionals and advocates. Methods A scoping review was conducted of the MEDLINE, Embase, Global Health, CINAHL, Web of Science and PsycINFO databases, as well as grey literature sources. Articles were included if they explored any aspect of palliative care in Malawi. Results 114 articles were identified that met the inclusion criteria. This literature shows that Malawi has implemented diverse strategies across all pillars to develop palliative care. These strategies include creating a national stand-alone palliative care policy; integrating palliative care into the curricula of healthcare professionals and developing training for diverse service providers; establishing systems for the procurement and distribution of opioids; implementing diverse models of palliative care service delivery; and launching a national palliative care association. Malawi has also generated local evidence to inform palliative care, but several research gaps were identified. Conclusions Malawi has made considerable progress in palliative care development, although initiatives are needed to improve medicine availability, access in rural areas, and socioeconomic support for patients and their families living with advanced disease. Culturally sensitive research is needed regarding the quality of palliative care and the impact of therapeutic interventions.

PURPOSE:In this scoping review, we evaluated existing literature related to factors influencing treatment decision-making for patients diagnosed with cancer in low- and middle-income countries, noting factors that influence decisions to pursue treatment with curative versus non-curative intent. We identified an existing framework for adult cancer developed in a high-income country (HIC) context and described similar and novel factors relevant to low-and middle-income country settings. METHODS:We used scoping review methodology to identify and synthesize existing literature on factors influencing decision-making for pediatric and adult cancer in these settings. Articles were identified through an advanced Boolean search across six databases, inclusive of all article types from inception through July 2022. RESULTS:Seventy-nine articles were identified from 22 countries across six regions, primarily reporting the experiences of lower-middle and upper-middle-income countries. Included articles largely represented original research (54%), adult cancer populations (61%), and studied patients as the targeted population (51%). More than a quarter of articles focused exclusively on breast cancer (28%). Approximately 30% described factors that influenced decisions to choose between therapies with curative versus non-curative intent. Of 56 reported factors, 22 novel factors were identified. Socioeconomic status, reimbursement policies/cost of treatment, and treatment and supportive care were the most commonly described factors. CONCLUSIONS:This scoping review expanded upon previously described factors that influence cancer treatment decision-making in HICs, broadening knowledge to include perspectives of low- and middle-income countries. While global commonalities exist, certain variables influence treatment choices differently or uniquely in different settings. Treatment regimens should further be tailored to local environments with consideration of contextual factors and accessible resources that often impact decision-making.

INTRODUCTION:Evaluating the quality of dying and death is essential to ensure high-quality end-of-life care. The Quality of Dying and Death (QODD) scale is the best-validated measure of the construct, but many items are not relevant to participants, particularly in low-resource settings. The aim of this multisite cross-sectional study is to develop and validate the QODD-Revised Global Version (QODD-RGV), to enhance ease of completion and relevance in higher-resource and lower-resource settings.METHODS AND ANALYSIS:This study will be a two-arm, multisite evaluation of the cultural relevance, reliability and validity of the QODD-RGV across four participating North American hospices and a palliative care site in Malawi, Africa. Bereaved caregivers and healthcare providers of patients who died at a participating North American hospice and bereaved caregivers of patients who died of cancer at the Malawian palliative care site will complete the QODD-RGV and validation measures. Cognitive interviews with subsets of North American and Malawian caregivers will assess the perceived relevance of the scale items. Psychometric evaluations will include internal consistency and convergent and concurrent validity.ETHICS AND DISSEMINATION:The North American arm received approval from the University Health Network Research Ethics Board (21-5143) and the University of North Carolina Institutional Review Board (21-1172). Ethics approval for the Malawi arm is being obtained from the University of North Carolina Institutional Review Board and the Malawian National Health Science Research Committee. Study findings will be disseminated through publication in peer-reviewed journals and conference presentations.

PURPOSE Low health literacy is a leading cause of treatment abandonment among patients receiving cancer care at Kamuzu Central Hospital (KCH) in Malawi. METHODS We developed cancer educational videos featuring Malawian providers and played them in the KCH oncology clinic. The videos addressed cancer-related topics, including disease biology, common myths, diagnostic procedures, treatment, side effects, and survivorship. After 6 months of implementation, we compared results from 50 pre- and postintervention surveys to assess change in cancer knowledge and care experience. RESULTS Both pre- and postintervention cancer knowledge were good: a median of nine questions were answered correctly of 11 in both assessments. Despite the intervention, most continued to incorrectly identify cancer as an infection (pre: n = 26, 52%; post: n = 25, 50%; P = 1.0), although improvements were observed in patients' knowledge of correct actions for fever at home (pre: n = 38, 76%; post: n = 43, 86%; P = .31). Care experiences were overall good. Postintervention results indicate that more patients felt always listened to by their providers (pre: n = 18, 36%; post: n = 29, 58%; P < .01). However, we also noted a higher rate of patient dissatisfaction of care as more patients felt that they could not understand chemotherapy counseling (pre: n = 11, 22%; post: n = 22, 44%; P < .01). Assessments of video satisfaction indicate that patients found the videos very helpful in terms of understanding their disease (n = 47, 96%) and side effects (n = 48, 98%) and felt empowered to speak up with their providers (n = 46, 96%). CONCLUSION Standardized education materials for patients that can be feasibly implemented throughout sub-Saharan Africa are urgently needed. Cancer educational videos are a low-cost way to educate and empower patients with cancer in resource-constrained settings although in-person discussions remain a crucial part of care.

The novel coronavirus, SARS-CoV-2, can present with a wide range of neurological manifestations, in both adult and pediatric populations. We describe here the case of a previously healthy 8-year-old girl who presented with seizures, encephalopathy, and rapidly progressive, diffuse, and ultimately fatal cerebral edema in the setting of acute COVID-19 infection. CSF analysis, microbiological testing, and neuropathology yielded no evidence of infection or acute inflammation within the central nervous system. Acute fulminant cerebral edema (AFCE) is an often fatal pediatric clinical entity consisting of fever, encephalopathy, and new-onset seizures followed by rapid, diffuse, and medically-refractory cerebral edema. AFCE occurs as a rare complication of a variety of common pediatric infections and a CNS pathogen is identified in only a minority of cases, suggesting a para-infectious mechanism of edema. This report suggests that COVID-19 infection can precipitate AFCE, and highlights the need for high suspicion and early recognition thereof.

Background Patient-reportedoutcomes (PROs) that assess health-related quality of life (HRQoL) are increasingly important components of cancer care and research that are infrequently used in sub-Saharan Africa (SSA). Methods We administered the Chichewa Pediatric Patient-Reported Outcome Measurement Information System Pediatric (PROMIS)-25 at diagnosis, active treatment, and follow-up among pediatric lymphoma patients in Lilongwe, Malawi. Mean scores were calculated for the six PROMIS-25 HRQoL domains (Mobility, Anxiety, Depressive Symptoms, Fatigue, Peer Relationships, Pain Interference). Differences in HRQoL throughout treatment were compared using the minimally important difference (MID) and an ANOVA analysis. Kaplan-Meier survival estimates and Cox hazard ratios for mortality are reported. Results Seventy-five children completed PROMIS-25 surveys at diagnosis, 35 (47%) during active treatment, and 24 (32%) at follow-up. The majority of patients died (n = 37, 49%) or were lost to follow-up (n = 6, 8%). Most (n = 51, 68%) were male, median age was 10 (interquartile range [IQR] 8-12), 48/73 (66%) presented with advanced stage III/IV, 61 (81%) were diagnosed with Burkitt lymphoma and 14 (19%) Hodgkin lymphoma. At diagnosis, HRQoL was poor across all domains, except for Peer Relationships. Improvements in HRQoL during active treatment and follow-up exceeded the MID. On exploratory analysis, fair-poor PROMIS Mobility <40 and severe Pain Intensity = 10 at diagnosis were associated with increased mortality risk and worse survival, but were not statistically significant. Conclusions Pediatric lymphoma patients in Malawi present with poor HRQoL that improves throughout treatment and survivorship. Baseline PROMIS scores may provide important prognostic information. PROs offer an opportunity to include patient voices and prioritize holistic patient-centered care in low-resource settings.

The ongoing clinical care, advocacy, and research within the field of hospice and palliative medicine predominately focuses on the means by which to improve symptom management and quality of life for patients with serious illnesses. Lifestyle medicine interventions, if applied mindfully, have the potential to aid in improving symptom management and overall quality of life in addition to daily function for these patient populations, especially given the minimal associated risk. Lifestyle medicine is characterized by health and wellness modifications that most often include the promotion of a healthy diet, increased physical activity, and limitation of alcohol or tobacco use with a goal of improving overall health and quality of life. Lifestyle medicine interventions are most widely studied and accepted in the management of chronic medical conditions, often in prevention of chronic disease or as the first-line treatment. Similar interventions have the potential to improve the quality of life for persons with advanced disease and more serious illness, but their effects are less well-studied, likely given that this population is particularly vulnerable. In the article, “Lifestyle Medicine Interventions in Patients with Advanced Disease Receiving Palliative or Hospice Care,” Anandarajah et al, in this issue of American Journal of Lifestyle Medicine, review the existing state of literature on lifestyle medicine