'Someone must do it': multiple views on family's role in end-of-life care - an international qualitative study.

Background: Family is a crucial social institution in end-of-life care. Family caregivers are encouraged to take on more responsibility at different times during the illness, providing personal and medical care. Unpaid work can be overburdening, with women often spending more time in care work than men. Objectives: This study explored multiple views on the family's role in end-of-life care from a critical perspective and a relational autonomy lens, considering gender in a socio-cultural context and applying a relational autonomy framework. It explored patients, relatives and healthcare providers' points of view. Design: This qualitative study was part of the iLIVE project, involving patients with incurable diseases, their relatives and health carers from hospital and non-hospital sites. Methods: Individual interviews of at least five patients, five relatives and five healthcare providers in each of the 10 participating countries using a semi-structured interview guide based on Giger-Davidhizar-Haff's model for cultural assessment in end-of-life care. Thematic analysis was performed initially within each country and across the complete dataset. Data sources, including researchers' field notes, were translated into English for international collaborative analysis. Results: We conducted 158 interviews (57 patients, 48 relatives and 53 healthcare providers). After collaborative analysis, five themes were identified across the countries: family as a finite care resource, families' active role in decision-making, open communication with the family, care burden and socio-cultural mandates. Families were crucial for providing informal care during severe illness, often acting as the only resource. Patients acknowledged the strain on carers, leading to a conceptual model highlighting socio-cultural influences, relational autonomy, care burden and feminisation of care. Conclusion: Society, health teams and family systems still need to better support the role of family caregivers described across countries. The model implies that family roles in end-of-life care balance relational autonomy with socio-cultural values. Real-world end-of-life scenarios do not occur in a wholly individualistic, closed-off atmosphere but in an interpersonal setting. Gender is often prominent, but normative ideas influence the decisions and actions of all involved.

Management of Infections in Palliative Care Patients at the End-of-Life and Active Process of Death: A Brazilian Retrospective Study.

Background: There is a lack of specific studies on the management of infections in patients receiving palliative care (PC) in the final stages of life and during the active process of death, related to specific nursing care. There is clinical and social importance as patients in PC represent a vulnerable population, and adequate management of infections is crucial to improve quality of life and the experience of comfort. Objective: This study analyzed how infections are managed in patients undergoing PC at the end-of-life and in the active process of death in two hospital health services. Design: This is an observational, analytical, and retrospective study. Settings: Data collection took place in two hospitals that assist individuals who are hospitalized under PC, located in Brazil, in a city in the interior of the state of São Paulo. Measurements and Results: The sample consisted of 113 medical records, in which the oncological diagnosis was the most prevalent. There was a predominance of infection diagnoses based on the patient's clinical symptoms, the main focus being the pulmonary, in individuals at the end-of-life. The management of infection in the study sample occurred through care and procedures that generate physical discomfort, however aiming at relieving symptoms. Such findings must be documented, as they invite us to reflect on our practical attitudes and what it means to be comfortable for these people, making it possible to incorporate this information into the design of interventions focused on enhancing the experience of comfort.

Anxiety and resilience in palliative medicine physicians.

OBJECTIVE: To identify the relationship between the degree of anxiety and the capacity for resilience in palliative care physicians. METHODS: Cross-sectional analytical study with non-probability sampling. We included 42 Colombian Palliative Care Physicians and administered a sociodemographic questionnaire, the Zung Anxiety Scale and the Resilience Scale. RESULTS: 42 palliative care physicians with an average age of 41 participated in the study. Anxious symptoms were present in 100% of the physicians evaluated. Mild or moderate anxiety was identified in 93.7% of the population and 6.3% of people with severe anxiety symptoms. Less than half of the participants considered demonstrated high levels of resilience. We found an inverse and significant correlation between the factors that make up the Resilience Scale and the manifestation of psychological and physical symptoms of anxiety. CONCLUSION: Our results reflect that the population of palliative care physicians has a higher risk and exposure to developing anxiety and its adverse outcomes. We found higher anxiety levels compared with other studies so this population requires greater vigilance and intervention in treating and preventing mental health difficulties.

Do not resuscitate orders and limitation of therapeutic effort: Ethical challenges in healthcare teams in Chile. / Orden de no reanimar y limitación del esfuerzo terapéutico: desafíos éticos en equipos sanitarios en Chile.

The purpose of this paper is to delve into the ethical aspects experienced by the healthcare team when they receive the directive to limit therapeutic effort or a do-not-resuscitate order. From an interpretative, qualitative paradigm with a content analysis approach, a process based on three phases was conducted: pre-analysis in which categories were identified, the projection of the analysis, and inductive analysis. During 2023, interviews were conducted in the clinical setting of a high-complexity hospital in Chile with 56 members of the healthcare teams from critical and emergency units, from which four categories emerged: a) the risk of violating patients' rights by using do-not-resuscitate orders and limiting therapeutic effort; b) the gap in the interpretation of the legal framework addressing the care and attention of patients at the end of life or with terminal illnesses by the healthcare team; c) ethical conflicts in end-of-life care; and d) efficient care versus holistic care in patients with terminal illness. There are significant gaps in bioethics training and aspects of a good death in healthcare teams facing the directive to limit therapeutic effort and not resuscitate. It is suggested to train personnel and work on a consensus guide to address the ethical aspects of a good death.

El propósito de este trabajo es profundizar en los aspectos éticos que experimenta el equipo de salud cuando reciben la indicación de limitar el esfuerzo terapéutico o la orden de no reanimar. Desde un paradigma interpretativo, cualitativo y con un enfoque de análisis de contenido, se realizó un proceso basado en tres fases: preanálisis en el que se identificaron las categorías, la proyección del análisis y el análisis inductivo. Durante 2023, se realizaron entrevistas en el entorno clínico de un hospital de alta complejidad en Chile a 56 miembros de equipos de salud de unidades críticas y urgencias, de las que emergieron cuatro categorías: a) riesgo de vulnerar los derechos de los pacientes al utilizar la orden de no reanimar, y limitación del esfuerzo terapéutico; b) brecha en la interpretación del marco legal que aborda la atención y cuidado de pacientes al final de la vida, o con enfermedades terminales por parte del equipo de salud; c) conflictos éticos de la atención al final de la vida; y d) el cuidado eficiente o el cuidado holístico en pacientes con enfermedad terminal. Existen brechas importantes en la formación en bioética y aspectos del buen morir en los equipos de salud que se enfrentan a la orden de limitar el esfuerzo terapéutico y no reanimar. Se sugiere capacitar al personal, y trabajar una guía de consenso para abordar los aspectos éticos del buen morir.

Defining the Denominator for Measuring Quality of End-of-Life Care in Children with Cancer: Results of a Nominal Group Technique.

OBJECTIVE: To determine which groups of children with cancer for whom to apply the newly developed quality measures (QMs) for end-of-life (EOL) care. STUDY DESIGN: In a series of nominal groups, panelists answered the question: "Which children, diagnoses, conditions, or prognoses should be included when examining the quality of EOL care for children with cancer?" In each group, individual panelists proposed answers to the question. After collating individual responses, each panelist ranked their 5 top answers and points were assigned (5 pts for the best answer, 4 pts the second best, etc.). A team of pediatric oncology and palliative care clinician-scientists developed and applied a coding structure for responses and associated themes and subthemes for responses. RESULTS: We conducted 5 nominal groups with a total of 44 participants. Most participants identified as female (88%) and non-Hispanic White (86%). Seventy-nine percent were clinicians, mainly in pediatric palliative care, pediatric oncology, or hospice; 40% were researchers and 12% were bereaved parents. Responses fell into 5 themes: (1) poor prognosis cancer; (2) specific treatment scenarios; (3) certain populations; (4) certain symptoms; and (5) specific utilization scenarios. Poor prognosis cancer and specific treatment scenarios received the most points (320 pts [49%] and 147 pts [23%], respectively). CONCLUSIONS: Participants developed a framework to identify which children should be included in EOL QMs for children with cancer. The deliberate identification of the denominator for pediatric QMs serves as a potent tool for enhancing quality, conducting research, and developing clinical programs.

Children with cancer at the end of life in a middle-income country: integrated pediatric palliative care improves outcomes.

BACKGROUND: In 2020, the Global Cancer Observatory reported 280,000 cases of childhood cancer worldwide, with a higher burden of disease and mortality rates in low- and middle-income countries. In 2022, the National Institute of Health reported 1708 new cases of childhood cancer in Colombia and an overall survival rate of approximately 55%. The aim of this study is to compare outcomes in children with cancer in the hospital setting during the last 72 h of life who received concurrent Pediatric Palliative Care (PPC) versus oncology care alone. METHODS: An observational descriptive study was conducted between January 2013 and June 2022 in a center for pediatric patients with oncological diagnoses. In 2017, the PPC team was created. Patients between 28 days and 17 years of age who were hospitalized at least 72 h before death were included. A retrospective review of the medical records of patients in the last 72 h of life was performed. Two cohorts were established: oncology-alone group received exclusive management by oncology, and oncology and PPC received concurrent oncology and PPC management since the diagnosis. RESULTS: We evaluated 257 medical records of deceased pediatric patients with cancer diagnoses. For the first cohort (2013-2017), 136 patients were included; for the second cohort (2018 and 2022), 121 patients were evaluated. The most frequent diagnosis was leukemia [47.1% (n = 121)]. No significant difference was found in either group between dyspnea, pain, and seizures. Dyspnea was the most frequent symptom in both groups. Agitation and anxiety were reported more frequently in children from the oncology-alone group (22.1% and 13.2%, respectively). The oncology and PPC group received more psychology and social work consultation (94.2% and 70.2% vs. 84.6 and 54.4% in the oncology alone group) and had a higher percentage of advance care planning (79.3% vs. 62.5% in the oncology alone group). CONCLUSIONS: This retrospective study highlights that PPC at the end of life (EoL) offers a holistic approach to the physical and psychosocial symptoms experienced by children with cancer; these patients received more comfort through symptom management and less aggressive treatment at the EoL. The availability of a PPC team may contribute to improvements in the quality of end-of-life care. TRIAL REGISTRATION: retrospectively registered.

The Physician Surprise Question in the Emergency Department: prospective cohort study.

OBJECTIVES: This study aims to test the ability of the surprise question (SQ), when asked to emergency physicians (EPs), to predict in-hospital mortality among adults admitted to an emergency room (ER). METHODS: This prospective cohort study at an academic medical centre included consecutive patients 18 years or older who received care in the ER and were subsequently admitted to the hospital from 20 April 2018 to 20 October 2018. EPs were required to answer the SQ for all patients who were being admitted to hospital. The primary outcome was in-hospital mortality. RESULTS: The cohort included 725 adults (mean (SD) age, 60 (17) years, 51% men) from 58 128 emergency department (ED) visits. The mortality rates were 20.6% for 30-day all-cause in-hospital mortality and 23.6% for in-hospital mortality. The diagnostic test characteristics of the SQ have a sensitivity of 53.7% and specificity of 87.1%, and a relative risk of 4.02 (95% CI 3.15 to 5.13), p<0.01). The positive and negative predictive values were 57% and 86%, respectively; the positive likelihood ratio was 4.1 and negative likelihood ratio was 0.53; and the accuracy was 79.2%. CONCLUSIONS: We found that asking the SQ to EPs may be a useful tool to identify patients in the ED with a high risk of in-hospital mortality.

End-of-life care in neonatal intensive care units in Iberoamerica: A look from the nursing perspective.

INTRODUCTION: End-of-life care (ELC) represents a quality milestone in neonatal intensive care units (NICU). The objective of this study was to explore how ELC are carried out in NICUs in Iberoamerica. METHODS: Cross-sectional study, through the administration of an anonymous survey sent to neonatal nursing professionals. The survey included general data and work activity data; existence and contents of ELC protocols in the NICU and training received. The survey was distributed by email and published on official SIBEN social networks. REDCap and STATA 14.0 software were used for data collection and analysis. RESULTS: We obtained 400 responses from nurses from 11 countries in the Ibero-American region. 86% of the respondents are directly responsible for providing ELC, although 48% of them said they had not received training on this subject. Only 67 (17%) state that the NICU in which they work has a protocol that establishes a strategy for performing the ELC. Finally, the actions that are implemented during the ELC are globally infrequent (≤50%) in all the items explored and very infrequent (<20%) in relation to allowing free access to family members, having privacy, providing psychological assistance, register the process in the medical record, assist with bureaucratic processes or grant a follow-up plan for grief. CONCLUSION: Most of the nursing professionals surveyed are directly responsible for this care, do not have protocols, have not received training, and consider that the ELC could be significantly improved. Strategies for ELCs in the Ibero-American region need to be optimized.

Go Wish card game-exploring end-of-life wishes of patients in oncology palliative care: a qualitative study.

BACKGROUND: Among the methods that promote quality of life and care, discussing and remembering end-of-life (EOL) wishes for future care may contribute to decision-making about care and the promotion of a good death. Our aim was to investigate the most significant EOL desires among Brazilian cancer patients receiving palliative care (PC). METHODS: This was an exploratory, descriptive, and qualitative study conducted in a Palliative Care Oncology Unit. Fifteen patients played the Go Wish card game (GWCG), choosing and categorizing cards into themes as very important, more or less important, and not important at all. The ten most important cards were discussed, and categories were defined for each card. Cards with the highest frequencies of choice were described. Patients were also asked, "What did playing the cards mean to you?". All data were analyzed using Bardin's content analysis and generated a word cloud to interpret the participants' narratives. RESULTS: Out of the 36 cards, card 19, "I want my family and friends close to me", was the most frequently chosen. Out of the 15 patients studied, only one reported that they initially did not enjoy playing the cards. In this study, the GWCG was effective in fulfilling 90% of the patients' wishes, and this was only possible with the support of the researchers, members of the multi-professional team, and patients' families. CONCLUSIONS: The use of the GWCG in the oncology PC setting made an important contribution to open discussions about patients' values and preferences, as well as being an easy-to-use, understandable, and flexible tool. Prioritizing the fulfillment of patients' wishes was one of the main strengths of this study. Our study suggests working with these wishes as a framework for person-centered care.

Quality of death educational programme in a national reference palliative care unit.

OBJECTIVE: To report the experience of offering the Quality End of Life Care for All (QELCA) Programme, highlighting the distinct methodology for the training of health professionals. DEVELOPMENT: The QELCA Programme, intellectual property of St Christopher's Hospice, was offered to seven health professionals working in the hospital palliative care unit at the National Cancer Institute, between June and December 2022, with the support of Premier Institute. The programme, which originates in the UK, has been evaluated there and is currently being evaluated in Hong Kong, and is delivered in two phases: (1) a 5-day immersion programme; (2) monthly sessions of Action Learning for 6 months. Participants realised that communication between members of the multidisciplinary team, as well as between health professionals and patients/loved ones, was one of the key challenges for achieving quality of death in the hospital palliative care unit. This insight empowered them to drive forward significant changes in practice that promise to improve quality of care. CONCLUSION: The QELCA Programme enabled participants to engage in active problem-solving to promote the relief of suffering of patients and their families in end-of-life care.

Variability in the perception of palliative care and end-of-life care among hematology professionals from the same reference center in Bahia, Brazil: A descriptive cross-sectional study

ABSTRACT BACKGROUND: There are several illness-specific cultural and system-based barriers to palliative care (PC) integration and end-of-life (EOL) care in the field of oncohematology. OBJECTIVES: This study aimed to investigate the variability in the perceptions of PC and EOL care. DESIGN AND SETTING: A cross-sectional study was conducted in the Hematology Division of our University Hospital in Salvador, Bahia, Brazil. METHODS: Twenty physicians responded to a sociodemographic questionnaire and an adaptation of clinical questionnaires used in previous studies from October to December 2022. RESULTS: The median age of the participants was 44 years, 80% of the participants identified as female, and 75% were hematologists. Participants faced a hypothetical scenario involving the treatment of a 65-year-old female with a poor prognosis acute myeloid leukemia refractory to first-line treatment. Sixty percent of the participants chose to follow other chemotherapy regimens, whereas 40% opted for PC. Next, participants considered case salvage for the patient who developed septic shock following chemotherapy and were prompted to choose their most probable conduct, and the conduct they thought would be better for the patient. Even though participants were from the same center, we found a divergence from the most probable conduct among 40% of the participants, which was due to personal convictions, legal aspects, and other physicians' reactions. CONCLUSIONS: We found considerable differences in the perception of PC and EOL care among professionals, despite following the same protocols. The study also demonstrated variations between healthcare professionals' beliefs and practices and persistent historical tendencies to prioritize aggressive interventions.

Orden de no reanimar y limitación del esfuerzo terapéutico: desafíos éticos en equipos sanitarios en Chile / Do not resuscitate orders and limitation of therapeutic effort: Ethical challenges in healthcare teams in Chile

RESUMEN El propósito de este trabajo es profundizar en los aspectos éticos que experimenta el equipo de salud cuando reciben la indicación de limitar el esfuerzo terapéutico o la orden de no reanimar. Desde un paradigma interpretativo, cualitativo y con un enfoque de análisis de contenido, se realizó un proceso basado en tres fases: preanálisis en el que se identificaron las categorías, la proyección del análisis y el análisis inductivo. Durante 2023, se realizaron entrevistas en el entorno clínico de un hospital de alta complejidad en Chile a 56 miembros de equipos de salud de unidades críticas y urgencias, de las que emergieron cuatro categorías: a) riesgo de vulnerar los derechos de los pacientes al utilizar la orden de no reanimar, y limitación del esfuerzo terapéutico; b) brecha en la interpretación del marco legal que aborda la atención y cuidado de pacientes al final de la vida, o con enfermedades terminales por parte del equipo de salud; c) conflictos éticos de la atención al final de la vida; y d) el cuidado eficiente o el cuidado holístico en pacientes con enfermedad terminal. Existen brechas importantes en la formación en bioética y aspectos del buen morir en los equipos de salud que se enfrentan a la orden de limitar el esfuerzo terapéutico y no reanimar. Se sugiere capacitar al personal, y trabajar una guía de consenso para abordar los aspectos éticos del buen morir.

ABSTRACT The purpose of this paper is to delve into the ethical aspects experienced by the healthcare team when they receive the directive to limit therapeutic effort or a do-not-resuscitate order. From an interpretative, qualitative paradigm with a content analysis approach, a process based on three phases was conducted: pre-analysis in which categories were identified, the projection of the analysis, and inductive analysis. During 2023, interviews were conducted in the clinical setting of a high-complexity hospital in Chile with 56 members of the healthcare teams from critical and emergency units, from which four categories emerged: a) the risk of violating patients' rights by using do-not-resuscitate orders and limiting therapeutic effort; b) the gap in the interpretation of the legal framework addressing the care and attention of patients at the end of life or with terminal illnesses by the healthcare team; c) ethical conflicts in end-of-life care; and d) efficient care versus holistic care in patients with terminal illness. There are significant gaps in bioethics training and aspects of a good death in healthcare teams facing the directive to limit therapeutic effort and not resuscitate. It is suggested to train personnel and work on a consensus guide to address the ethical aspects of a good death.

Clinical Characteristics of Individuals with Interstitial Lung Diseases and Indication of End-of-Life Care.

End-of-life care (EOLC) is palliative support provided in the last 6 months to 1 year of a patient's life. Although there are established criteria for its indication, few studies describe the clinical and functional characteristics of individuals with interstitial lung diseases (ILD) in EOLC. ILD individuals underwent various assessments, including lung function, exercise capacity (6 min walk test), physical activity in daily life (PADL), peripheral muscle strength, maximal respiratory pressures, body composition, quality of life (SGRQ-I), symptoms of anxiety and depression, dyspnea (MRC scale), and sleep quality. Fifty-eight individuals were included and divided into two groups according to the indication for commencing EOLC (ILD with an indication of EOLC (ILD-EOLC) or ILD without an indication of EOLC (ILD-nEOLC). There were differences between the groups, respectively, for steps/day (2328 [1134-3130] vs. 5188 [3863-6514] n/day, p = 0.001), time spent/day carrying out moderate-to-vigorous physical activities (1 [0.4-1] vs. 10 [3-19] min/day, p = 0.0003), time spent/day in standing (3.8 [3.2-4.5] vs. 4.8 [4.1-6.7] h/day, p = 0.005), and lying positions (5.7 [5.3-6.9] vs. 4.2 [3.6-5.1] h/day, p = 0.0004), the sit-to-stand test (20 ± 4 vs. 26 ± 7 reps, p = 0.01), 4 m gait speed (0.92 ± 0.21 vs. 1.05 ± 0.15 m/s, p = 0.02), quadriceps muscle strength (237 [211-303] vs. 319 [261-446] N, p = 0.005), SGRQ-I (71 ± 15 vs. 50 ± 20 pts, p = 0.0009), and MRC (4 [3-5] vs. 2 [2-3] pts, p = 0.001). ILD individuals with criteria for commencing EOLC exhibit reduced PADL, functional performance, peripheral muscle strength, quality of life, and increased dyspnea.

PALLIATIVE CARE AND END OF LIFE CARE IN LATIN AMERICA: SCOPING REVIEW

INTRODUCTION: Populational aging and improved treatments for chronic non-communicable diseases extend life expectancy but not always quality of life. By 2060, 48 million people are expected to die of serious illnesses, and 83% of these deaths will occur in developing countries. Only 14% of those who needed palliative care receive it. AIM: To describe the methodological trends, thematic areas, populations studied, and future challenges in Latin American regions with respect to adult palliative care. METHODS: A scoping review of 60 articles from 2010 to 2019 in indexed journals in English, Spanish, and Portuguese was conducted. RESULTS: Most articles were from Brazil, Colombia, and Mexico. Patients, caregivers, healthcare professionals, and students constituted the primary study population. Quality of Life, knowledge, and costs of attention were also assessed. It appears that early palliative care improves the outcomes of patients, caregivers, and health care professionals, however, the disparity in palliative care services between Latin America, US, UK, Canada, and Spain is concerning. CONCLUSIONS: Globally, more palliative care is needed, especially in Latin America. However, there are not enough graduate palliative care programs. Academic palliative care education must be promoted. Communication between the interdisciplinary team, the patient, and the caregiver is critical. While the region's scientific literature output has improved, many knowledge gaps remain. For patients' sake, governments should regulate, create, and facilitate palliative care services.

Palliative Care in the state of Rio de Janeiro (Brazil): characteristics of the services.

This research explores the status of Palliative Care (PC) services in the state of Rio de Janeiro (RJ), Brazil, by identifying the number of services and their respective characteristics. Through an observational, cross-sectional, descriptive, and quantitative approach, this study examines a textual and numerical database about professionals who provide palliative care assistance in Rio de Janeiro. Out of the existing palliative care services analyzed, fourteen were evaluated, twelve of which were located in the RJ metropolitan region. The majority of professionals worked with private funding within hospitals. The PC teams were most commonly composed of physicians, with only 17.1% of the professionals having formal PC training. Palliative Care services in Rio de Janeiro seem to follow a similar pattern to Brazil and Latin America. However, the characteristics of this pattern may not adequately address the significant needs of middle-income countries.

The Mapping of Influencing Factors in the Decision-Making of End-of-Life Care Patients: A Systematic Scoping Review.

Decisions in end-of-life care are influenced by several factors, many of which are not identified by the decision maker. These influencing factors modify important decisions in this scenario, such as in decisions to adapt to therapeutic support. This presented scoping review aims to map the factors that influence end-of-life care decisions for adult and older adult patients, by a scoping review. The review was carried out in 19 databases, with the keyword 'clinical decision-making' AND 'terminal care' OR 'end-of-life care' and its analogues, including publications from 2017 to 2022. The study was conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses for Scoping Reviews. The search resulted in 3474 publications, where the presence of influencing factors in end-of-life decision-making for adults and the elderly was applied as a selection criterion. Fifty-four (54) of them were selected, which means 1.5% of all the results. Among the selected publications, 89 influencing factors were found, distributed in 54 (60.6%) factors related to the health team, 18 (20.2%) to patients, 10 (11.2%) related to family or surrogates and 7 (7.8%) factors related to the decision environment. In conclusion, we note that the decision-making in end-of-life care is complex, mainly because there is an interaction of different characters (health team, patient, family, or surrogates) with a plurality of influencing factors, associated with an environment of uncertainty and that result in a critical outcome, with a great repercussion for the end of life, making it imperative the recognition of these factors for more competent and safe decision-making.

Implementing a Serious Illness Risk Prediction Model: Impact on Goals of Care Documentation.

CONTEXT: Goals of care conversations can promote high value care for patients with serious illness, yet documented discussions infrequently occur in hospital settings. OBJECTIVES: We sought to develop a quality improvement initiative to improve goals of care documentation for hospitalized patients. METHODS: Implementation occurred at an academic medical center in Pittsburgh, Pennsylvania. Intervention included integration of a 90-day mortality prediction model grouping patients into low, intermediate, and high risk; a centralized goals of care note; and automated notifications and targeted palliative consults. We compared documented goals of care discussions by risk score before and after implementation. RESULTS: Of the 12,571 patients hospitalized preimplementation and 10,761 postimplementation, 1% were designated high risk and 11% intermediate risk of mortality. Postimplementation, goals of care documentation increased for high (17.6%-70.8%, P< 0.0001) and intermediate risk patients (9.6%-28.0%, P < 0.0001). For intermediate risk patients, the percentage of goals of care documentation performed by palliative medicine specialists increased from pre- to postimplementation (52.3%-71.2%, P = 0.0002). For high-risk patients, the percentage of goals of care documentation completed by the primary service increased from pre-to postimplementation (36.8%-47.1%, P = 0.5898, with documentation performed by palliative medicine specialists slightly decreasing from pre- to postimplementation (63.2%-52.9%, P = 0.5898). CONCLUSIONS: Implementation of a goals of care initiative using a mortality prediction model significantly increased goals of care documentation especially among high-risk patients. Further study to assess strategies to increase goals of care documentation for intermediate risk patients is needed especially by nonspecialty palliative care.

Preference and actual place-of-death in advanced cancer: prospective longitudinal study.

OBJECTIVES: To evaluate the preferred place-of-death (PPoD) among patients with advanced cancer over time, and the concordance between preferred and actual place-of-death. METHODS: Prospective cohort study. A total of 190 patients with advanced cancer and their caregivers (n=190) were interviewed every 3 months, from study enrolment to 12 months (M0, M1, M2, M3, M4). PPoD data were obtained under four different end-of-life scenarios: (1) severe clinical deterioration without further specification; (2) clinical deterioration suffering from severe symptoms; (3) clinical deterioration receiving home-based visits; and (4) clinical deterioration receiving home-based visits and suffering from severe symptoms. RESULTS: Home was the most common PPoD over time among patients in scenarios 1 (n=121, 63.7%; n=77, 68.8%; n=39, 57.4%; n=30, 62.5%; n=23, 60.5%) and 3 (n=147, 77.4%; n=87, 77.7%; n=48, 70.6%; n=36, 75.0%; n=30, 78.9%). PPoD in palliative care unit (PCU) and hospital were most frequent at baseline in scenario 2 (n=79, 41.6%; n=78, 41.1%), followed by hospital over time (n=61, 54.5%; n=45, 66.2%; n=35, 72.9%; n=28, 73.7%). During the curse of illness, 6.3% of patients change their PPoD in at least one of end-of-life scenario. About 49.7%, 30.6% and 19.7% of patients died in PCU, hospital and home, respectively. Living in rural area (OR=4.21), poor health self-perception (OR=4.49) and pain at the last days of life (OR=2.77) were associated with death in PPoD. The overall agreement between last preference and actual place-of-death was 51.0% (k=0.252). CONCLUSION: Home death was not the preferred place for a large number of patients when this option was presented within a clinical context scenario. The PPoD and actual place-of-death were depending on the clinical situation.

Diffuse intrinsic pontine gliomas: First registry effort in Mexico.

INTRODUCTION: Brainstem tumors comprise 10.9% of all brain tumors, and pediatric diffuse intrinsic pontine gliomas (DIPG) have a fatal prognosis. Some countries have developed national and international register databases to characterize their populations to aid clinical and public policy decisions. This study provides information regarding the clinical characteristics of a retrospective cohort of children with DIPG in México from 2001 to 2021, and assesses the proposed prognostic factors previously described for survival outcome. METHODS: Health institutions from Mexico were invited to contribute to a retrospective electronic registry of patients with DIPG based on the International DIPG Registry. Fisher's exact test was used to compare long- and short-term survivors. Overall survival was estimated using the Kaplan-Meier method. Differences between survival curves were evaluated using the log-rank test and Cox proportional hazard regression analysis. RESULTS: Total 110 patients were included. The median age of the patients at diagnosis was 7 years. Sixty patients (54.5%) presented with symptoms in less than 6 months; the most frequent symptom was ataxia (56.4%). Ninety patients received treatment (81.8%), the overall survival at 4 years was 11.4%, and 16 patients (14.5%) were admitted for palliative end-of-life care. We found no significant survival differences for any of the prognostic factors. CONCLUSION: This study highlights the need to develop strategies to standardize healthcare processes and enhance the quality of care to improve clinical diagnosis in Mexico. We also observed a barrier to the acceptance of palliative end-of-life care in the family and medical teams.