Past trends and future projections of palliative care needs in Chile: analysis of routinely available death registry and population data.

BACKGROUND: The number of people with palliative care needs is projected to increase globally. Chile has recently introduced legislation for universal access to palliative care services for patients with severe and terminal illnesses, including non-cancer conditions. We aimed to estimate the number of people affected by serious health-related suffering and need for palliative care in Chile to 2050. METHODS: We used data on all deaths registered in Chile between 1997-2019 and population estimates for 1997-2050. We used Poisson regression to model past trends in causes of death adjusted by age, sex and population estimates, to project the number of deaths for each cause from 2021 to 2050. We applied the Lancet Commission on Palliative Care and Pain Relief weights to these projections to identify decedents and non-decedents with palliative care needs. RESULTS: Population palliative care needs in Chile are projected to increase from 117 (95% CI 114 to 120) thousand people in 2021 to 209 (95% CI 198 to 223) thousand people in 2050, a 79% increase (IRR 1.79; 95% CI 1.78-1.80). This increase will be driven by non-cancer conditions, particularly dementia (IRR 2.9, 95% CI 2.85-2.95) and cardiovascular conditions (IRR 1.86, 95% CI 1.83-1.89). By 2050, 50% of those estimated to need palliative care will be non-decedents (not expected to die within a year). CONCLUSIONS: Chile will experience a large increase in palliative care needs, particularly for people with dementia and other non-cancer conditions. Improved availability of high-quality services, expanded clinician training and new sustainable models of care are urgently required to ensure universal access to palliative care.

Consensus palliative care referral criteria for people with chronic obstructive pulmonary disease.

OBJECTIVE: People with advanced chronic obstructive pulmonary disease (COPD) have substantial palliative care needs, but uncertainty exists around appropriate identification of patients for palliative care referral.We conducted a Delphi study of international experts to identify consensus referral criteria for specialist outpatient palliative care for people with COPD. METHODS: Clinicians in the fields of respiratory medicine, palliative and primary care from five continents with expertise in respiratory medicine and palliative care rated 81 criteria over three Delphi rounds. Consensus was defined a priori as ≥70% agreement. A criterion was considered 'major' if experts endorsed meeting that criterion alone justified palliative care referral. RESULTS: Response rates from the 57 panellists were 86% (49), 84% (48) and 91% (52) over first, second and third rounds, respectively. Panellists reached consensus on 17 major criteria for specialist outpatient palliative care referral, categorised under: (1) 'Health service use and need for advanced respiratory therapies' (six criteria, eg, need for home non-invasive ventilation); (2) 'Presence of symptoms, psychosocial and decision-making needs' (eight criteria, eg, severe (7-10 on a 10 point scale) chronic breathlessness); and (3) 'Prognostic estimate and performance status' (three criteria, eg, physician-estimated life expectancy of 6 months or less). CONCLUSIONS: International experts evaluated 81 potential referral criteria, reaching consensus on 17 major criteria for referral to specialist outpatient palliative care for people with COPD. Evaluation of the feasibility of these criteria in practice is required to improve standardised palliative care delivery for people with COPD.

Global Assessment of Palliative Care Need: Serious Health-Related Suffering Measurement Methodology.

CONTEXT: Inequities and gaps in palliative care access are a serious impediment to health systems especially in low- and middle-income countries and the accurate measurement of need across health conditions is a critical step to understanding and addressing the issue. Serious Health-related Suffering (SHS) is a novel methodology to measure the palliative care need and was originally developed by The Lancet Commission on Global Access to Palliative Care and Pain Relief. In 2015, the first iteration - SHS 1.0 - was estimated at over 61 million people worldwide experiencing at least 6 billion days of SHS annually as a result of life-limiting and life-threatening conditions. OBJECTIVES: In this paper, an updated methodology - SHS 2.0 - is presented building on the work of the Lancet Commission and detailing calculations, data requirements, limitations, and assumptions. METHODS AND RESULTS: The updates to the original methodology focus on measuring the number of people who die with (decedents) or live with (non-decedents) SHS in a given year to assess the number of people in need of palliative care across health conditions and populations. Detail on the methodology for measuring the number of days of SHS that was pioneered by the Lancet Commission, is also shared, as this second measure is essential for determining the health system responses that are necessary to address palliative care need and must be a priority for future methodological work on SHS. CONCLUSIONS: The methodology encompasses opportunities for applying SHS to future policy making assessment of future research priorities particularly in light of the dearth of data from low- and middle-income countries, and sharing of directions for future work to develop SHS 3.0.

The development of an advanced diploma program for palliative care leaders in Chile.

Context: The majority of people with serious health-related suffering in low- and middle-income countries lack access to palliative care (PC). Increased access to PC education is greatly needed. Objectives: This paper describes the process to adapt an advanced PC training course for a Chilean context. Methods: A joint team of intercultural PC educators from the US and Chile conducted a series of key informant interviews and a target audience survey to iteratively design a PC training course in Chile. Results: Eight key informant interviews identified a strong need for formal PC education pathways, confirmed the five central learning domains, and helped to identify potential course sub-topics. A target audience survey of 59 PC providers from across Chile confirmed a strong desire to participate in such a course. Conclusion: Our team of intercultural PC educators adapted an advanced PC course to the unique context of Chilean providers.

Non-pharmaceutical interventions to combat COVID-19 in the Americas described through daily sub-national data.

This dataset covers national and subnational non-pharmaceutical interventions (NPI) to combat the COVID-19 pandemic in the Americas. Prior to the development of a vaccine, NPI were governments' primary tools to mitigate the spread of COVID-19. Variation in subnational responses to COVID-19 is high and is salient for health outcomes. This dataset captures governments' dynamic, varied NPI to combat COVID-19 for 80% of Latin America's population from each country's first case through December 2021. These daily data encompass all national and subnational units in Argentina, Bolivia, Brazil, Chile, Colombia, Ecuador, Mexico, and Peru. The dataset includes individual and aggregate indices of nine NPI: school closures, work suspensions, public event cancellations, public transport suspensions, information campaigns, local travel restrictions, international travel controls, stay-at-home orders, and restrictions on the size of gatherings. We also collected data on mask mandates as a separate indicator. Local country-teams drew from multiple data sources, resulting in high-quality, reliable data. The dataset thus allows for consistent, meaningful comparisons of NPI within and across countries during the pandemic.

Objective burden, caregiver psychological distress, and patient religion and quality of life are associated with high-intensity burden of care among caregivers of advanced cancer patients in a Latino population.

OBJECTIVES: Family caregivers (FCs) of cancer patients experience burden of care. The aims of this study are to describe the caregiving phenomenon among FCs of advanced cancer patients in a Latino community and to identify caregiver and patient characteristics associated with high-intensity subjective caregiver burden. METHODS: In this cross-sectional study, advanced cancer patient-caregiver dyads assessed at a Palliative Care Unit in Santiago, Chile, enrolled in a longitudinal observational study were included. FCs completed questions to describe the caregiving phenomenon and surveys to assess burden of care, psychological distress, and perception of patients' symptoms; patients completed surveys to assess physical distress and quality of life (QOL). We explored associations between high-intensity subjective caregiver burden with caregiver and patient variables. RESULTS: Two hundred seven dyads were analyzed. FCs were on average 50 years old and 75% female. Thirty-two percent of FCs experienced high-intensity subjective burden of care. Eighty two percent of FCs took care of the patient daily and 31% took care of the patient alone. In univariate analysis, high-intensity caregiver burden was associated with caregiver depression (59% vs. 27%; p < 0.001), anxiety (86% vs. 67%; p = 0.003), caring for the patient alone (45% vs. 24%; p = 0.002), perception of patient symptom distress, patient religion, and worse patient QOL (mean [standard deviation] 58 [33] vs. 68 [27]; p = 0.03). In multivariate analysis, FC depression (OR [95% confidence interval] 3.07 [1.43-6.60]; p = 0.004), anxiety (3.02 [1.19-7.71]; p = 0.021), caring for the patient alone (2.69 [1.26-5.77]; p = 0.011), caregiver perception of patient's fatigue (1.26 [1.01-1.58]; p = 0.04), and patient's religion (3.90 [1.21-12.61]; p = 0.02) were independently associated with caregiver burden. SIGNIFICANCE OF RESULTS: FCs of advanced cancer patients in a Latino community frequently experience high-intensity burden of care and are exposed to measures of objective burden. High-intensity burden is associated with both caregiver and patient factors. Policies should aim to make interventions on patient-caregiver dyads to decrease caregiving burden among Latinos.

Is Acetaminophen Beneficial in Patients With Cancer Pain Who are on Strong Opioids? A Randomized Controlled Trial.

CONTEXT: Pain is common among cancer patients. The evidence recommends using strong opioids in moderate to severe cancer pain. No conclusive evidence supports the effectiveness of adding acetaminophen to patients with cancer pain who are already using this regime. OBJECTIVES: To assess the analgesic efficacy of acetaminophen in hospitalized cancer patients with moderate to severe pain receiving strong opioids. METHODS: In this randomized blinded clinical trial, hospitalized cancer patients with moderate or severe acute pain managed with strong opioids were randomized to acetaminophen or placebo. The primary outcome was pain intensity difference between baseline and 48 hours using the Visual Numeric Rating Scales (VNRS). Secondary outcomes included change in morphine equivalent daily dose (MEDD), and patients' perception of improved pain control. RESULTS: Among 112 randomized patients, 56 patients received placebo, 56 acetaminophen. Mean (standard deviation [SD]) decrease in pain intensity (VNRS) at 48 hours were 2.7 (2.5) and 2.3 (2.3), respectively (95% Confidence Interval (CI) [-0.49; 1.32]; P = 0.37). Mean (SD) change in MEDD was 13.9 (33.0) mg/day and 22.4 (57.7), respectively (95% CI [-9.24; 26.1]; P = 0.35). The proportion of patients perceiving pain control improvement after 48 hours was 82% in the placebo and 80% in the acetaminophen arms (P = 0.81). CONCLUSION: Among patients with cancer pain on strong opioid regime, acetaminophen may not improve pain control, or decrease total opioid use. These results add to the current evidence available suggesting not to use acetaminophen as an adjuvant for advanced cancer patients with moderate to severe cancer pain who are on strong opioids.

Bridging gaps to universal palliative care access in Chile: serious health-related suffering and the cost of expanding the package of care services.

Background: The Lancet Commission on Palliative Care (PC) and Pain Relief quantified the burden of serious health-related suffering (SHS), proposing an Essential Package of PC (EPPC) to narrow the global PC divide. We applied the EPPC framework to analyze PC access in Chile, identify gaps in coverage, and provide recommendations to improve PC access. Methods: Total SHS and population in need of PC was estimated using official 2019 government data. We differentiated between cancer and non-cancer related SHS given guaranteed Chilean PC coverage for cancer. We calculated differences between the Chilean PC package and the Lancet Commission EPPC to estimate the cost of expanding to achieve national coverage of palliative care. Findings: In 2019, nearly 105,000 decedent and non-decedent Chileans experienced SHS with a lower-bound estimate of 12.1 million days and an upper-bound estimate of 42.4 million days of SHS. Each individual experienced between 116 and 520 days of SHS per year. People living with a cancer diagnosis had PC access with financial protection, accounting for almost 42% of patients in need. People with non-cancer diagnoses-about 61 thousand patients-lacked PC coverage. Expanding coverage of the EPPC for all patients in need would cost just above $123 million USD, equivalent to 0.47% of Chilean National Health Expenditure. Interpretation: Achieving universal PC access is urgent and feasible for Chile, classified as a high-income country. Expanding PC services and coverage to the EPPC standard are affordable and critical health system responses to ensuring financial protection for patients with SHS. In Chile, this requires closing large gaps in PC coverage pertaining to patients with non-cancer conditions and treatment of symptoms that go beyond pain. Our research provides an empirical approach for applying the Lancet Commission SHS framework to estimate the cost of achieving national universal PC access anchored in a package of health care services. Funding: This research was partially funded by the Chilean Government through the Fondo Nacional de Ciencia y Tecnología (Fondecyt Regular) grant number 1201721, the U.S. Cancer Pain Relief Committee grant AWD-003806 awarded to the University of Miami and by the University of Miami Institute for Advanced Study of the Americas. We acknowledge NIH/NCI award P30CA008748.

Development and Validation of a Tool to Assess the Structural Quality of Palliative Care Services.

CONTEXT: The current gap in access to palliative care requires the expansion of palliative care services worldwide. There is little information about the structural components required by palliative care services to provide adequate end-of-life care. No specific tools have been developed to assess the structural quality of these services. OBJECTIVE: To develop and validate a tool to assess the structural quality of palliative care services. METHODS: A scoping review of literature was performed to identify structural quality indicators of palliative care services. National experts participated in a two-round Delphi method to reach consensus regarding the importance and measurement feasibility of each proposed indicator. Consensus was reached for each indicator if 60% or more considered them both important and feasible. The selected indicators were tested among Chilean palliative care services to assess instrument psychometric characteristics. RESULTS: Thirty-one indicators were identified. Thirty-five experts participated in a two-round Delphi survey. Twenty-one indicators reached consensus and were included in the structural quality of palliative care services tool (SQPCS-21). This instrument was applied to 201 out of 250 palliative care services in Chile. Achievement for each indicator varied between 8% and 96% (mean 52%). The total SQPCS-21 score varied between 3 and 21 points (mean 11 points). CONCLUSION: The SQPCS-21 tool to assess structural quality of palliative care services, has good content and construct validity and its application provides information about institutions at the individual and aggregated level. This tool can provide guidance to monitor the structural quality of palliative care worldwide.

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

CONTEXT: Progress in palliative care (PC) necessarily involves scientific development. However, research conducted in South America (SA) needs to be improved. OBJECTIVES: To develop a set of recommendations to advance PC research in SA. METHODS: 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%. RESULTS: 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. CONCLUSION: 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.

[Training in palliative care in nursing and medical schools in Chile]. / Estado de formación en cuidados paliativos a nivel del pregrado en las carreras de Medicina y Enfermería de Chile.

Training in Palliative Care (PC) at the undergraduate level has proven to be an effective strategy to expand access to this type of services. In Chile, the increase in magnitude of serious health-related suffering and the recently approved Law that guarantees universal access to Palliative Care, requires the extension of PC undergraduate training in medical and nursing schools. Therefore, this study assessed and described the characteristics of current PC training in the Schools of Medicine and Nursing of Chile through an online survey of their directors. Nursing schools report higher frequency of mandatory training hours and access to clinical training, while Medicine schools report higher frequency of elective internships. However, gaps persist in the number of teaching hours and the teaching methods used, which may be due to the scarcity of qualified professionals in PC, limited access to clinical fields and disciplinary differences. Strengthening and expanding PC training at the undergraduate level with practical and interdisciplinary methodologies are fundamental steps so that future medical and nursing professionals can provide adequate care and relief of serious health-related suffering to an aging population until the end of their life.

Criteria for Referral of Patients With Advanced Heart Failure for Specialized Palliative Care.

BACKGROUND: Patients with advanced heart failure have substantial supportive care needs. Specialist palliative care can be beneficial, but it is unclear who is most appropriate for referral and when patients should be referred. OBJECTIVES: We conducted a Delphi study of international experts to identify consensus referral criteria for specialist palliative care for patients with advanced heart failure. METHODS: Clinicians from 5 continents with expertise in the integration of cardiology and palliative care were asked to rate 34 disease-based, 24 needs-based, and 9 time-based criteria over 3 rounds. Consensus was defined a priori as ≥70% agreement. A criterion was coded as major if the experts endorsed that meeting that criterion alone was adequate to justify a referral. RESULTS: The response rate was 44 of 46 (96%), 41 of 46 (89%), and 43 of 46 (93%) in the first, second, and third rounds, respectively. Panelists reached consensus on 25 major criteria for specialist palliative care referral. The 25 major criteria were categorized under 6 topics, including "advanced/refractory heart failure, comorbidities, and complications" (eg, cardiac cachexia, cardiorenal syndrome) (n = 8), "advanced heart failure therapies" (eg, chronic inotropes, precardiac transplant) (n = 4), "hospital utilization" (eg, emergency room visits, hospitalization) (n = 2), "prognostic estimate" (n = 1), "symptom burden/distress" (eg, severe physical/emotional/spiritual distress) (n = 6), and "decision making/social support" (eg, goals-of-care discussions) (n = 4). The majority (68%) of major criteria had ≥90% agreement. CONCLUSIONS: International experts reached consensus on a large number of criteria for referral to specialist palliative care. With further validation, these criteria may be useful for standardizing palliative care access in the inpatient and/or outpatient settings.

Randomized double-blind controlled trial to assess the efficacy of intravenous acetaminophen associated with strong opioids in the treatment of acute pain in adult cancer patients: study protocol.

BACKGROUND: Cancer pain is one of the most frequent and relevant symptoms in cancer patients and impacts on patient's quality of life. International and local standards recommend as an initial strategy the use of an analgesic scheme composed of strong opioids associated with adjuvants such as acetaminophen, based upon the assumption that combining drugs could have a better analgesic effect, could allow lowering opioid dosing, and could prevent the occurrence of adverse effects of opioids. However, there is uncertainty about the impact of acetaminophen as an adjuvant in patients who use strong opioids for moderate to severe pain management in cancer patients. The aim of this study is to assess the efficacy and safety of intravenous acetaminophen associated with strong opioids in hospitalized adult cancer patients who have moderate to severe cancer-related pain. METHODS: We will perform a randomized double-blinded controlled study comparing intravenous acetaminophen 1 g 4 times a day versus placebo for 48 h as an adjuvant to strong opioids. We will assess pain intensity as a primary outcome, using the verbal numerical rating scale (VNRS, I0 to 10 scale with higher scores meaning higher pain intensity), and we will compare the mean difference in pain intensity between baseline and 48 h among the placebo and intervention groups. We estimate that a decrease of 1 point in the VNRS would be clinically significant. Assuming a standard deviation in pain intensity of 1.7 points, an alpha of 0.025, and a power of 0.8, we estimate a sample size of 112 patients, with 56 patients in each arm. Secondary outcomes include the difference in total opioid use between baseline and at 48 h among the groups, and adverse effects such as drowsiness, constipation, nausea, and vomiting would be evaluated. DISCUSSION: The randomized, double-blind, placebo-controlled design is the best strategy to assess the efficacy of acetaminophen as an adjuvant in adult cancer patients with moderate to severe pain who are receiving strong opioids. We expect to contribute to national and international guidelines with these results. TRIAL REGISTRATION: Clinicaltrials.gov NCT04779567 . Registered on March 3, 2021. Retrospectively registered.

Furthering Palliative Care Training in Latin America: Development and Assessment of an Advanced Diploma Course in Palliative Care in Chile.

CONTEXT: The vast majority of people with serious health-related suffering in low- and middle-income countries lack access to palliative care (PC). In Latin America, this shortage is critical, and PC education is greatly needed. OBJECTIVES: This study aims to assess the effects of an advanced PC diploma course in Chile through assessment of participants' satisfaction, knowledge, behavior, and self-efficacy. METHODS: We developed and implemented a 12-day, hybrid-setting, advanced PC diploma course for Latin American clinicians and collected and analyzed pre course, immediate post course, and 6-month post course quantitative and qualitative data on satisfaction, knowledge, behaviors, and self-efficacy. RESULTS: Thirteen Latin American doctors participated in this advanced PC diploma course. Overall knowledge and self-efficacy increased post course. One hundred percent of participants described the course as "very high quality" or "high quality," described the course's teaching methods as "very easy to understand" or "easy to understand," and ranked role-play as a "very useful" tool. CONCLUSION: There is a critical shortage of PC in Latin America where PC education is greatly needed. The lessons learned from this pilot advanced PC diploma course will inform further PC educational development in Latin America. The results of our course assessments show that an advanced diploma course can increase participants' PC knowledge, behaviors, and self-efficacy with a goal of leveraging the Train the Trainer model to increase PC educational leadership and enable training at participants' home institutions.

Estado de formación en cuidados paliativos a nivel del pregrado en las carreras de Medicina y Enfermería de Chile / Training in palliative care in nursing and medical schools in Chile

Training in Palliative Care (PC) at the undergraduate level has proven to be an effective strategy to expand access to this type of services. In Chile, the increase in magnitude of serious health-related suffering and the recently approved Law that guarantees universal access to Palliative Care, requires the extension of PC undergraduate training in medical and nursing schools. Therefore, this study assessed and described the characteristics of current PC training in the Schools of Medicine and Nursing of Chile through an online survey of their directors. Nursing schools report higher frequency of mandatory training hours and access to clinical training, while Medicine schools report higher frequency of elective internships. However, gaps persist in the number of teaching hours and the teaching methods used, which may be due to the scarcity of qualified professionals in PC, limited access to clinical fields and disciplinary differences. Strengthening and expanding PC training at the undergraduate level with practical and interdisciplinary methodologies are fundamental steps so that future medical and nursing professionals can provide adequate care and relief of serious health-related suffering to an aging population until the end of their life.

Strengthening Health Systems To Face Pandemics: Subnational Policy Responses To COVID-19 In Latin America.

Nonpharmaceutical interventions such as stay-at-home orders continue to be the main policy response to the COVID-19 pandemic in countries with limited or slow vaccine rollout. Often, nonpharmaceutical interventions are managed or implemented at the subnational level, yet little information exists on within-country variation in nonpharmaceutical intervention policies. We focused on Latin America, a COVID-19 epicenter, and collected and analyzed daily subnational data on public health measures in Argentina, Bolivia, Brazil, Chile, Colombia, Ecuador, Mexico, and Peru to compare within- and across-country nonpharmaceutical interventions. We showed high heterogeneity in the adoption of these interventions at the subnational level in Brazil and Mexico; consistent national guidelines with subnational heterogeneity in Argentina and Colombia; and homogeneous policies guided by centralized national policies in Bolivia, Chile, and Peru. Our results point to the role of subnational policies and governments in responding to health crises. We found that subnational responses cannot replace coordinated national policy. Our findings imply that governments should focus on evidence-based national policies while coordinating with subnational governments to tailor local responses to changing local conditions.

Lifetime socioeconomic determinants of health trajectories among older adults.

Drawing on life course theory and research, we explored how socioeconomic circumstances during childhood and adulthood shape self-reported health trajectories among older Mexican adults. We used data from the Mexican Health and Aging Study panel survey (2001-2015) and used sequence analysis to estimate types of self-reported health trajectories in older adulthood. We then explored the association between those health trajectories and socioeconomic determinants at different life stages, including education, occupation, employment, economic status, parental education, and adverse living conditions and illnesses during childhood. Our contributions are threefold. First, we identified four types of health trajectories for men and eight for women, representing a more nuanced longitudinal health status profile than previously shown. Second, we found that childhood and adult socioeconomic circumstances influence self-reported health trajectories at older age. Third, our results suggest there is no simple monotonic relationship between life course circumstances and self-reported health trajectories.

[Paracetamol as an adjuvant to opioids for cancer pain management]. / Paracetamol como coadyuvante a opioides fuertes en dolor oncológico moderado a intenso: ¿es realmente efectivo?

Cancer related pain is one of the most frequent and relevant symptoms in patients with malignant tumors, causing a huge impact in their quality of life. According to the Chilean Public Health System Technical Report of the Cancer Pain Control and Palliative Care Program 2013-2014, 90% of cancer patients admitted to the Program experienced pain, being moderate or intense in 34%. International and local standards recommend the use of strong opioids (morphine, methadone, or fentanyl) associated with adjuvants such as paracetamol as an initial strategy for pain management. This recommendation assumes that the use of combined analgesics could allow the use of lower opioid doses to obtain similar analgesic effect, decreasing the occurrence of opioid side effects. However, this technical report also describes that there is uncertainty about the impact of paracetamol as an adjuvant in patients with cancer pain who are already receiving strong opioids. This review aims to describe the current state of the art regarding the role of paracetamol as a coadjuvant in cancer pain patients.