Conscientious objection and barriers to abortion within a specific regional context - an expert interview study.

BACKGROUND: While most countries that allow abortion on women's request also grant physicians a right to conscientious objection (CO), this has proven to constitute a potential barrier to abortion access. Conscientious objection is regarded as an understudied phenomenon the effects of which have not yet been examined in Germany. Based on expert interviews, this study aims to exemplarily reconstruct the processes of abortion in a mid-sized city in Germany, and to identify potential effects of conscientious objection. METHODS: Five semi-structured interviews with experts from all instances involved have been conducted in April 2020. The experts gave an insight into the medical care structures with regard to abortion procedures, the application and manifestations of conscientious objection in medical practice, and its impact on the care of pregnant women. A content analysis of the transcribed interviews was performed. RESULTS: Both the procedural processes and the effects of conscientious objection are reported to differ significantly between early abortions performed before the 12th week of pregnancy and late abortions performed at the second and third trimester. Conscientious objection shows structural consequences as it is experienced to further reduce the number of possible providers, especially for early abortions. On the individual level of the doctor-patient relationship, the experts confirmed the neutrality and patient-orientation of the vast majority of doctors. Still, it is especially late abortions that seem to be vulnerable to barriers imposed by conscientious objection in individual medical encounters. CONCLUSION: Our findings indicate that conscientious objection possibly imposes barriers to both early and late abortion provision and especially in the last procedural steps, which from an ethical point of view is especially problematic. To oblige hospitals to partake in abortion provision in Germany has the potential to prevent negative impacts of conscientious objection on women's rights on an individual as well as on a structural level.

Cancer control in Latin America and the Caribbean: recent advances and opportunities to move forward.

The increasing burden of cancer represents a substantial problem for Latin America and the Caribbean. Two Lancet Oncology Commissions in 2013 and 2015 highlighted potential interventions that could advance cancer care in the region by overcoming existing challenges. Areas requiring improvement included insufficient investment in cancer control, non-universal health coverage, fragmented health systems, inequitable concentration of cancer services, inadequate registries, delays in diagnosis or treatment initiation, and insufficient palliative services. Progress has been made in key areas but remains uneven across the region. An unforeseen challenge, the COVID-19 pandemic, strained all resources, and its negative effect on cancer control is expected to continue for years. In this Series paper, we summarise progress in several aspects of cancer control since 2015, and identify persistent barriers requiring commitment of additional resources to reduce the cancer burden in Latin America and the Caribbean.

Insights from a community-based palliative care course: a qualitative study.

BACKGROUND: The vast majority of medical students have no exposure to clinical palliative care encounters, especially in the community. Medical schools should respond to current challenges and needs of health systems by guaranteeing students adequate training that addresses palliative care needs of populations in different settings. The main purpose of this qualitative study was to capture the experiences of a select group of medical students' following a community-based PC course. METHODS: We carried out a qualitative study using two focus groups to capture the experience of medical students in a course that combined classroom teaching with community-based learning for undergraduate medical students in Germany. Discussions were transcribed and analyzed thematically. RESULTS: Fifteen female students in their 2nd to 5th year participated in the focus groups, which provided didactic teaching and experiential learning. Four areas were particularly relevant: (1) authenticity, (2) demystification of the concepts of palliative care through personal contact with patients, (3) translation of theoretical knowledge into practice, and (4) observation of a role model interacting with seriously ill patients and engaging in difficult conversations. CONCLUSION: Students whose encounters with patients and their families went beyond a review of their medical records had a better grasp of the holistic nature of PC than those who did not. Bringing students directly from the hospital to patients in their homes reinforced the benefits of an integrated healthcare system.

Feasibility of using death certificates for studying place of death in Latin America.

OBJECTIVE: This paper assesses the availability and quality of death certificate data in Latin America and the feasibility of using these data to study place of death and associated factors. METHODS: In this comparative study, we collected examples of current official death certificates and digital data files containing information about all deaths that occurred during 1 year in 19 Latin American countries. Data were collected from June 2019 to May 2020. The records for place of death and associated variables were studied. The criteria for data quality were completeness, number of ill-defined causes of death and timeliness. RESULTS: All 19 countries provided copies of current official death certificates and 18 of these registered the place of death. Distinguishing among hospital or other health care institution, home and other was possible for all countries. Digital data files with death certificate data were available from 12 countries and 1 region. Three countries had data considered to be of high quality and seven had data considered to be of medium quality. Categories for place of death and most of the predetermined factors possibly associated with place of death were included in the data files. CONCLUSIONS: The quality of data sets was rated medium to high in 10 countries. Hence, death certificate data make it feasible to conduct an international comparative study on place of death and the associated factors in Latin America.

Associated factors of distress in patients with advanced cancer: A retrospective study.

OBJECTIVE: The objective of this study was to assess the psychosocial distress and associated factors in advanced cancer patients consulting at the outpatient Palliative Care Unit at the National Cancer Institute in Mexico City. DESIGN: A retrospective study was conducted using electronic records (June 2015 to December 2016). SAMPLE: A total of 646 patients with advanced cancer during their first visit to the outpatient palliative care unit at the National Cancer Institute in Mexico were evaluated using the Distress Thermometer (DT) and ECOG performance status scores. FINDINGS: Overall, 62% were women, with a median age of 57 years, and married (54.8%). The most frequent diagnosis was gastrointestinal cancer (28.6%), and 38.9% had a functional performance status of ECOG 2. The median DT score was 4.0 (IQR = 2-6), with 56% reporting DT scores ≥4. The three most frequent problems ≥4 were sadness (82.6%), feeling weak (81.2%), worry (79.6%), and <4 were feeling weak (57.7%), fatigue (55.6%), and financial security (52.1%). The variables associated with distress according to the multiple logistic regression analysis were problems with housing (OR = 2.661, 95% CI = 1.538-4.602), sadness (OR = 2.533, 95% CI = 1.615-3.973), transportation (OR = 1.732, 95% CI = 1.157-2.591), eating (OR = 1.626, 95% CI = 1.093-2.417), nervousness (OR = 1.547, 95% CI = 1.014-2.360), and sleep (OR = 1.469, 95% CI = 1.980-2.203). CONCLUSION: The principal factors were related to distress levels, housing problems, transportation issues, and emotional problems such as sadness, nervousness, lower functionality, and younger age. Therefore, psychosocial support is of considerable relevance in palliative care. These findings will help clinicians understand the distress of patients with advanced cancer in palliative care in Latin American countries.

The impact of COVID-19 on palliative care workers across the world: A qualitative analysis of responses to open-ended questions.

OBJECTIVE: With over two million deaths and almost 100 million confirmed cases, the COVID-19 pandemic has caused a "tsunami of suffering." Health care workers, including palliative care workers, have been severely impacted. This study explores how the COVID-19 pandemic has impacted palliative care workers around the world and describes the coping strategies they have adopted to face their specific situation. METHOD: We conducted a qualitative analysis of written, unstructured comments provided by respondents to a survey of IAHPC members between May and June 2020. Free text was exported to MAX QDA, and a thematic analysis was performed by reading the comments and developing a coding frame. RESULTS: Seventy-seven palliative care workers from 41 countries submitted at least one written comment, resulting in a data corpus of 10,694 words and a total of 374 coded comments. Eight main themes are emerged from the analysis: palliative care development, workforce impact, work reorganization, palliative care reconceptualization, economic and financial impacts, increased risk, emotional impact, and coping strategies. SIGNIFICANCE OF RESULTS: The pandemic has had a huge impact on palliative care workers including their ability to work and their financial status. It has generated increased workloads and placed them in vulnerable positions that affect their emotional well-being, resulting in distress and burnout. Counseling and support networks provide important resilience-building buffers. Coping strategies such as team and family support are important factors in workers' capacity to adapt and respond. The pandemic is changing the concept and praxis of palliative care. Government officials, academia, providers, and affected populations need to work together to develop, and implement steps to ensure palliative care integration into response preparedness plans so as not to leave anyone behind, including health workers.

Translation and Validation of the Spanish Version of the Spiritual Care Competence Questionnaire (SCCQ).

We aimed to validate the Spanish version of the Spiritual Care Competence Questionnaire (SCCQ) in a sample of 791 health care professionals from Spanish speaking countries coming principally from Argentina, Colombia, Mexico and Spain. Exploratory factor analysis pointed to six factors with good internal consistency (Cronbach's alpha ranging from 0.71 to 0.90), which are in line with the factors of the primary version of the SCCQ. Conversation competences and Perception of spiritual needs competences scored highest, and Documentation competences and Team spirit the lowest, Empowerment competences and Spiritual self-awareness competences in-between. The Spanish Version of the SCCQ can be used for assessment of spiritual care competencies, planning of educational activities and for comparisons as well as monitoring/follow-up after implementation of improvement strategies.

Impact of COVID-19 Pandemic on Palliative Care Workers: An International Cross-sectional Study.

OBJECTIVES: The COVID-19 pandemic and the measures taken to mitigate spread have affected countries in different ways. Healthcare workers, in particular, have been impacted by the pandemic and by these measures. This study aims to explore how COVID-19 has impacted on palliative care (PC) workers around the world. MATERIALS AND METHODS: Online survey to members of the International Association for Hospice and PC during the initial months of the COVID-19 pandemic. Convenience sampling was used. Statistical descriptive and contingency analyses and Chi-square tests with P < 0.05 were conducted. RESULTS: Seventy-nine participants (RR = 16%) from 41 countries responded. Over 93% of those who provide direct patient care reported feeling very or somewhat competent in PC provision for patients with COVID-19. Eighty-four felt unsafe or somewhat safe when caring for patients with COVID-19. Level of safety was associated with competence (P ≤ 0.000). Over 80% reported being highly or somewhat affected in their ability to continue working in their PC job, providing care to non-COVID patients and in staff availability in their workplace. About 37% reported that availability and access to essential medicines for PC were highly or somewhat affected, more so in low-income countries (P = 0.003). CONCLUSION: The results from this study highlight the impact of COVID-19 on the provision of PC. It is incumbent on government officials, academia, providers and affected populations, to develop and implement strategies to integrate PC in pandemic response, and preparedness for any similar future events, by providing appropriate and comprehensive education, uninterrupted access to essential medicines and personal protective equipment and ensure access to treatment and care, working together with all levels of society that is invested in care of individuals and populations at large. The long-term effects of the pandemic are still unknown and future research is needed to monitor and report on the appropriateness of measures.

[Group Discussions in Health Services Research - Part 2: Reflections on The Concept of Group, Moderation and Analysis of Group Discussions as well as Online Group Discussion]. / Gruppendiskussionen in der Versorgungsforschung ­ Teil 2: Überlegungen zum Begriff der Gruppe, zur Moderation und Auswertung von Gruppendiskussionen sowie zur Methode der Online-Gruppendiskussion.

This article is the second of 2 articles on group discussions in health services research, written by the Qualitative Methods Working Group of the German Network for Health Care Research (DNVF). It starts with theoretical considerations on the concept of groups, and provides specific knowledge about groups in general and the behaviour of individual group members in particular, which is relevant for the design and interpretation of interaction processes in the group context. The following sections deal with the processuality of group discussions, moderation styles and techniques as well as reflections on possible subjects and methods of analysis. Presentation of results and text passages which unveil the interaction structure of several discussion participants are also discussed here. Finally, insights into the special features, potentials and challenges of group discussions via online platforms are provided. Together, the two articles provide an overview of the most important aspects of the application of group discussions in the field of health services research.

Changes in Distress Measured by the Distress Thermometer as Reported by Patients in Home Palliative Care in Germany.

AIM: To identify changes in distress as reported by patients in a home palliative care program over a 2-week period. METHODS: Prospective study in West Germany with consecutive patients cared for at home by a palliative care specialty team. Exclusion criteria were patients under 18 years of age, mentally or physically not able to complete the assessment questionnaires, or unable to comprehend German language. Distress was measured using the distress thermometer (DT); sociodemographic and medical data were collected from the patients' records. RESULTS: One hundred three participated in the study (response rate of 69%) and 39 participants completed DT at 2-week follow-up (T1; response rate = 38%; mean age = 67; female = 54.4%; married = 67%; living home with relatives = 60.2%; oncological condition = 91.3%; Karnofsky performance status [KPS] 0-40 = 18.9%, KPS 50-70 = 70.3%, KPS >80 = 10.8%). The mean DT score at the first visit (T0) was 5.9 (2.3), with 82.1% of the participants scoring DT ≥5. At the 2-week follow-up (T1), mean DT score was 5.0 (2.0), with 64.1% scoring DT ≥5, showing a statistically significant difference between T0 and T1. Comparing the single scores at T0 and T1 of each participant, the difference in DT scores was -0.9 (2.27). CONCLUSION: The DT is a useful tool for screening severity and changes in psychological distress as well as sources of distress. The DT detected change in self-reported distress within a short treatment period, indicating success or failure of the palliative care treatment approaches.

How much psychological distress is experienced at home by patients with palliative care needs in Germany? A cross-sectional study using the Distress Thermometer.

OBJECTIVE: The aims of the present study were (1) to describe the prevalence of psychosocial distress in palliative care patients living at home and the related factors, and (2) to test implementation of the Distress Thermometer (DT) within a home-based palliative care service. METHOD: Ours was a 15-month prospective study beginning in September of 2013 in western Germany with consecutive patients cared for by a home care palliative care service. The research was implemented during the first visit by the home care team. Patients were excluded if they were under 18 years of age, mentally or physically unable to complete the assessment questionnaires as judged by their healthcare worker, or unable to understand the German language. During the first encounter, the Distress Thermometer (DT), a Problem List (PL), and a structured questionnaire for evaluation were applied and sociodemographic and medical data collected. RESULTS: A total of 103 patients (response rate = 70%; mean age = 67; female = 54%; married = 67%; oncological condition = 91%; Karnofsky Performance Status [KPS] score 0-40 = 34%, 50-70 = 60%, >80 = 6%) were included. The incidence of distress (DT score ≥4) was 89.3% (mean = 6.3 ± 2.5). No statistical association was found between level of distress and sociodemographic or medical factors. The five most reported problems were "fatigue" (90%), "getting around" (84%), "eating" (63%), "bathing/dressing" (60%), and "sleep" (57%). The number of problems reported correlated with level of distress (ρ = 0.34). The DT was comprehensible, and 80% considered its completion as unremarkable, while 14% found it "relieving." SIGNIFICANCE OF RESULTS: A significant proportion of patients treated at home reported symptoms of distress. The most oft-mentioned problems were physical and emotional in nature. The findings of our study highlight the importance of creating new concepts and structures in order to address the psychosocial needs of patients in home care with palliative needs.

Accuracy of the Distress Thermometer for home care patients with palliative care needs in Germany.

OBJECTIVE: Our aim was to examine the accuracy of the German version of the Distress Thermometer (DT) compared with the Hospital Anxiety and Depression Scale (HADS) in patients with palliative care needs living at home. METHOD: Ours was a 15-month cross-sectional study beginning in September of 2013 in Germany with consecutive patients cared for by a palliative home care service. The survey was implemented during the initial visit by a home care team. Patients were excluded if they were under 18 years of age, mentally or physically unable to complete the assessment questionnaires as judged by their healthcare worker, or unable to understand the German language. During the first encounter, the DT and HADS were applied, and sociodemographic and medical data were collected. RESULTS: A total of 89 persons completed both the HADS and DT questionnaires (response rate = 59.7%; mean age = 67 years; female = 55.1%; married = 65.2%; living home with relatives = 73.0%; oncological condition = 92.1%; Karnofsky Performance Scale [KPS] score: 0-40 = 30.3%, 50-70 = 57.3%, >80 = 6.7%). The mean DT score was 6.3 (±2.3), with 84.3% of participants scoring above the DT cutoff (≥4). The mean HADStotal score was 17.9 (±7.8), where 64% of participants had a total HADS score (HADStotal) ≥15, 51.7% reported anxiety (HADSanxiety ≥ 8), and 73% reported depression (HADSdepression ≥ 8). Using the HADS as a gold standard, a DT cutoff score ≥5 was optimal for identifying severe distress in patients with palliative care needs, with a sensitivity of 93.0%, a specificity of 34.4%, a positive predictive value (PPV) of 73.3%, and likelihood ratios LR+ = 1.42 (<3) and -LR = 0.203 (<0.3). SIGNIFICANCE OF RESULTS: The DT performed satisfactorily compared to the HADS in screening for distress in our study and can be employed as an instrument for identification of patients with distress. Consequent to the high prevalence of distress, we recommend its routine use for screening distressed persons at home with palliative care needs in order to offer adequate support.

Opportunities for Palliative Care in Public Health.

In May 2014, the World Health Assembly, of the World Health Organization (WHO), unanimously adopted a palliative care (PC) resolution, which outlines clear recommendations to the United Nations member states, such as including PC in national health policies and in the undergraduate curricula for health care professionals, and highlights the critical need for countries to ensure that there is an adequate supply of essential PC medicines, especially those needed to alleviate pain. This resolution also carries great challenges: Every year over 20 million patients (of which 6% are children) need PC at the end of life (EOL). However, in 2011, approximately three million patients received PC, and only one in ten people in need is currently receiving it. We describe this public health situation and systems failure, the history and evolution of PC, and the components of the WHO public health model. We propose a role for public health for PC integration in community settings to advance PC and relieve suffering in the world.

Methadone as first-line opioid treatment for cancer pain in a developing country palliative care unit.

PURPOSE: The use of methadone for cancer pain is limited by the need of expertise and close titration due to variable half-life. Yet, it is a helpful palliative strategy in low-resources countries given its long-acting effect at low cost and worth additional study. Our aim was to describe the prescription and outcomes of methadone as a first-line treatment for cancer pain in a tertiary palliative care unit (PCU) in Argentina. METHODS: Retrospective review of medical records of patients with moderate to severe cancer pain seen at the PCU in 1-year period, who initiated strong opioids at the first consultation. Data collected during the first month of treatment included disease and pain characteristics, initial and final opioid type and dose and need for opioid rotation. RESULTS: Methadone was the most frequent opioid both at the initial and last assessment (71 and 66 % of the prescriptions). In all, treatment with strong opioids provided considerable decrease in pain intensity (p < 0.001) with low and stable opioid dose. Median and interquartile range (IR) of oral morphine equivalent daily dose (OMEDD) was 26 (16-32) and 39 (32-55) mg for initial and final assessments, respectively (p = 0.3). In patients initiated with methadone, the median (IR) daily methadone dose was 5 (4-6) mg at first and 7.5 (6-10) mg at final assessment, and the median (IR) index of opioid escalation was 0 (0-4) mg; (p < 0.05). Patients on methadone underwent less percentage of opioid rotation (15 versus 50 %; p < 0.001) and longer time to rotation (20.6 ± 4.4 versus 9.0 ± 2.7 days; p < 0.001) than patients on other opioids. CONCLUSIONS: Results indicate the preference of methadone as first-line strong opioid treatment in a PCU, providing good pain relief at low doses with low need for rotation. Several considerations about the costs of strong opioids in the region are given.

Palliative care development in Latin America: an analysis using macro indicators.

BACKGROUND: Recently, the Latin American Association for Palliative Care developed 10 indicators to monitor the development of palliative care and enhance the development of regional and national strategies. AIM: To compare the status of palliative care development across Latin American nations using the Latin American Association for Palliative Care indicators and to classify the countries into three levels of palliative care development. METHODS: A secondary analysis using the following indicators (number of indicators in each category): Policy (1), Education (3), Service Provision (3), and Opioids (3). A Latin American Association for Palliative Care Index was constructed adding the standard score (z-score) of each indicator. SETTING/PARTICIPANTS: Nineteen Spanish and Portuguese-speaking countries of Latin America. RESULTS: Indicators significantly associated with the number of palliative care services per million inhabitants included: the proportion of medical schools with palliative care at the undergraduate level (p = 0.003), the number of accredited physicians working in palliative care (p = 0.001), and opioids consumed per capita (p = 0.032). According to the Latin American Association for Palliative Care Index, Costa Rica registered the highest score (8.1). Three ranking groups were built to measure palliative care development; Costa Rica, Chile, Mexico, and Argentina ranked in the high group, while Bolivia, Honduras, Dominican Republic, and Guatemala ranked in the lowest group. CONCLUSION: Most of the Latin American Association for Palliative Care indicators are useful for assessing national levels of palliative care development. These indicators may be applicable to other world regions. Additional studies are needed to evaluate the specificity of each indicator.

Opioid prescribing for cancer pain in Latin America: systematic review.

OBJECTIVE: To explore opioid prescribing patterns for cancer pain in Latin America (LA). METHODS: A systematic review was conducted adhering to Preferred Reporting Items for Systematic Reviews and Meta-Analyses. Relevant databases, including MEDLINE, EMBASE, PubMed, LILACS and Scielo, were searched from inception to June 2023. Empirical studies of opioid prescription patterns in adult palliative care patients with cancer pain were included. Methodological quality was assessed using the Effective Public Health Practice Project tool. Data were analysed using narrative synthesis. Descriptive statistical analyses were conducted using SPSS V.28 (IBM). Categorical variables were summarised using frequencies and percentages and continuous variables as means or medians. RESULTS: Seventeen studies from six countries were included. Ten were observational, while seven were experimental, including five randomised controlled trials (RCT) and two non-RCT. Most were low or moderate methodological quality. Out of 7809 patients, morphine (54%) and tramadol (18%) were the most prescribed opioids. The median of morphine equivalent daily dose was 26 mg (IQR 26-41). CONCLUSION: Latin America shows lower opioid consumption rates compared with high-income countries for control pain management (CPM). More rigorous research on CPM in LA is needed. Additionally, a comprehensive review of opioid prescription patterns, including non-cancer diagnoses, is necessary.

Palliative care interventional research in general practice: a narrative review of factors affecting research conduct.

BACKGROUND AND OBJECTIVE: The majority of palliative care provision occurs in general practice, yet only 9% of palliative care clinical trials were conducted in this setting. Evidence from hospital and specialist settings is not readily transferable to general practice, as the population, context and care processes are vastly different. Conducting interventional palliative care research in general practice settings is subject to many challenges and barriers. This narrative review aims to describe the factors influencing the conduct of interventional research in general practice settings for patients with palliative care needs. METHODS: A narrative review was performed to identify factors affecting the conduct of palliative care interventional studies in general practice. A literature search of MEDLINE was conducted on 26 September 2023, and data were synthesised utilising a narrative approach. KEY CONTENT AND FINDINGS: Sixteen articles were identified. Five thematic groupings were identified from the literature that affected the interventions: factors related to health care professionals (HCPs), patients and carers, general practices, health systems, and research design. HCPs and practices were focused on providing clinical care and struggled to incorporate research into their workload. Staff and patients often had negative perceptions in palliative care combined with limited research experience, often resulting in unwillingness to engage in interventions and gatekeeping. Engaging with general practice staff to design, participate and champion research were key facilitators of successful interventions. CONCLUSIONS: Palliative care interventions in general practice are invariably complex and challenging, yet acutely needed to address the care needs of patients in the community setting. Working together with patients, carers and clinicians to design and implement interventions appropriate for general practice settings is fundamental to their success.

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.