Development Of Palliative Care Research Articles

Future scenarios of palliative care in health system of Iran: a multi-method study

BackgroundPaying attention to palliative care has accelerated in Iran in the last 10 years. Considering the trend of aging, increasing burden of chronic diseases and increasing health costs, planning and development of palliative care is necessary in the future. This study was conducted with the aim of explaining the alternative scenarios of palliative care in the health system of Iran until the horizon of 2030.MethodsThis study was a multi-method scenario planning with a qualitative using multiple methods design, which was conducted in 3 phases in 2018–2020. In the first phase, a list of driving forces was extracted using qualitative interviews and literature review. In the second phase, all factors identified in the previous phase were examined in terms of degree of uncertainty and cross-impact analysis, and two key uncertainties were extracted. In the third phase, based on two key uncertainties, four future scenarios of palliative care were formulated, validated and scenario strategies were presented.ResultsThe results indicate two uncertainties, including “governance of palliative care in the health system” and “acceptance of palliative care by society,” based on which, four scenarios with the names “climbing to the top,” “excruciating climb,” “edge of the abyss” and “The bottom of the valley” were compiled.ConclusionThe development of palliative care in health system of Iran is faced with serious uncertainties that it is necessary to focus the developmental activities of palliative care on the two axes of acceptance by society and need for coherent governance by considering all the dimensions and influential components by ministry of health. The application of the results of this research can provide reasonable options for effective interventions and implementation of this category of services to the beneficiaries of palliative care.

Cultural Differences Predict Palliative Care Development Across the United States: The Role of Cultural Tightness and Looseness

Across the United States, some regions demonstrate greater readiness to adopt palliative care than others. This geographic variation in access and utilization may be due to cultural variation in “tightness” and “looseness,” which can be understood as the relative strength and enforcement of social norms and behavioral constraint within a culture. The present study examined the influence of cultural tightness-looseness on access to palliative care (i.e., statewide percentage of hospitals with palliative care programs) across the 50 U.S. states while controlling for demographic covariates. Results of regression analyses demonstrated that states with looser cultures (i.e., less adherence to norms) had better palliative care access (β = .501, p = .012). Additionally, access was better in states with greater proportions of female (β = .455, p = .004) and white, non-Hispanic or Latino/a (β = .359, p = .002) residents. Strategies to improve utilization should consider the influence of culture and the relative strength of existing social norms within the region.

Comparing the Need and Development of Pediatric Palliative Care in Mexico: A Geographical Analysis

ContextThe Global Atlas of Palliative Care (GAPC) ranked Mexico's palliative care services at a preliminary integration stage into mainstream healthcare services. However, this data does not reflect pediatric palliative care (PPC) development. ObjectivesTo analyze the current need and level of development of PPC within Mexico. MethodsPPC need was estimated using causes of death associated with serious health-related suffering from national mortality data from the General Directorate of Health Information. The level of development was measured through six indicators involving access to PPC services and opioids, then classified using the GAPC development categories adapted to regional territories based on available data. ResultsIn 2021, 37,444 children died in Mexico. Of those, 10,677 (28.29%) died from conditions with serious health-related suffering, averaging a need for PPC of 25/100,000 children. Out of Mexico's 32 states, two (6.2%) had no PPC activity (category 1), twenty (62.6%) were in a capacity-building phase (category 2), eight (25%) had isolated PPC provision (category 3a), while two (6.2%) had generalized PPC provision (category 3b). No state had early (category 4a) or advanced PPC integration (category 4b). Overall, Mexico was classified as category 2. ConclusionsPPC services are distributed unevenly across the country, leading to inequitable access to care and an inability to meet the needs of patients and families. There is a disparity between the level of development of adult palliative care services and the underdevelopment of PPC in Mexico. This information can help stakeholders guide the development of PPC where it is needed most.

The role of undergraduate and postgraduate education in palliative, supportive and hospice care development

The role of undergraduate and postgraduate education in palliative, supportive and hospice care development

Wishes for a good death in context of the COVID-19 pandemic - perspective of older individuals living in Finland

ABSTRACT The purpose of this study was to describe the wishes for a good death in the context of the COVID-19 pandemic based on the perspective of older individuals living in Finland. The data (N = 18) were collected from October to December in 2021 through in-person interviews of independently living and aged 65 and older individuals. The data were analysed by inductive content analysis. Older individuals´ wishes for good death included consideration of empowering factors relating to the period before death and consideration of other people in connection with the death. In addition, it included preparing documentation of wills, enabling an individual moment of death, and deciding on matters relating to the funeral. The wishes of older individuals for a good death must be considered individually. They should be allowed to discuss their wishes for a good death. In addition to the development of palliative care, attention should be paid to the ethical dialogue surrounding the individual’s right to decide when to die.

“Let’s put it this way: you can’t really live without it” - digital technologies in routine palliative care delivery: an explorative qualitative study with patients and their family caregivers in Germany

BackgroundDespite ongoing efforts to integrate palliative care into the German healthcare system, challenges persist, particularly in areas where infrastructure does not fully support digital technologies (DT). The increasing importance of digital technology (DT) in palliative care delivery presents both opportunities and challenges.ObjectiveThis study aimed to explore the perspectives and preferences of palliative care patients and their family caregivers regarding the use of DT in care delivery.MethodsAn exploratory qualitative study was conducted using semi-structured interviews with palliative care patients and their family caregivers across various settings. Participants were selected through gatekeeper-supported purposive sampling. Interviews were analysed using structured qualitative content analysis.ResultsNineteen interviews were conducted.Three themes emerged: (1) Application of DTs in palliative care; (2) Potential of DTs; (3) Barriers to the use of DTs. Key findings highlighted the preference for real-time communication using DTs that participants are familiar with. Participants reported limited perceived value for digital transformation in the presence of in-person care. The study identified requirements for DT development and use in palliative care, including the need for direct and immediate functionality, efficiency in healthcare professional (HCP) work, and continuous access to services.ConclusionThe findings highlight a demonstrate the importance of familiarity with DTs and real-time access for patients and their families. While DT can enhance palliative care efficiency and accessibility, its integration must complement, not replace, in-person interaction in palliative care. As DTs continue to grow in scope and use in palliative care, maintaining continued user engagement is essential to optimise their adoption and ensure they benefit patients and their caregivers.

Place of death among children from 0 to 17 years of age: A population-based study from Sweden.

The aim of this study is to contribute to the development of paediatric palliative care by investigating, on a population basis, where children in Sweden died, from 2013 to 2019. A particular focus was on comparing two groups: children who died during their first year of life with children who died at 1-17 years of age. We hypothesised that there might be variations in place of death between the defined groups. Utilising national registry data, descriptive statistics were used to assess the distribution and variations in the place of death. Logistic regression analyses were conducted to ascertain the impact of associated factors. Most children died in hospitals (74.7%). The hypothesis postulating divergences in the place of death between age groups was not substantiated. Sex and birthplace showed no significant differences in home deaths. Deaths due to malignancies had a relatively high likelihood of occurring at home (39.0%). For perinatal diagnoses, the incidence of home deaths was relatively low (1.5%). Children who received support from a specialist palliative service in their own homes were notably less likely to die in a hospital setting compared to those who did not receive such support. An unplanned hospital visit increased the likelihood of hospital death.

From static snapshots to dynamic panoramas: the evolution and future vision of palliative care atlas in cross-national perspectives

Palliative care is essential to global health services as it improves the quality of life of patients, their families and caregivers. The ATLANTES Global Observatory of Palliative Care (University of Navarra) was created a decade ago to promote a positive attitude towards patients with advanced illness in society and medicine. To do so, and over the past 15 years, ATLANTES has mapped palliative care data worldwide using public health, macro and comparative perspectives in different atlases. These have enabled data to be contextualised and good examples to be identified concisely and graphically. Atlases have been widely employed as advocacy tools within international institutions and ministries of health. While the aim and the perspective have remained unalterable over time, the methods and design have evolved throughout the publications from sober cartography and static infographics to big interactive data visualisation web tools. By embracing technology, ATLANTES has developed an open-access web mapping tool reuniting information from regional atlases, favouring global access to data. In 2022, matching the increasingly recognised need for robust monitoring of palliative care worldwide, ATLANTES became a WHO Collaborating Centre for the Global Monitoring of Palliative Care Development. This attempt to bridge the gap and ensure equitable care information in countries with limited palliative care access has resulted today in more accessible, self-explanatory, and visually appealing palliative care data.

Health Care Worker Education for Palliative Care in Africa: Narrative Review.

The demand for palliative care for terminally ill patients is rising globally. This review examines the potential of health worker education to enhance palliative care in Africa. A search of PubMed yielded 32 relevant articles published in English from 2013 to 2023 focused on African countries with WHO-categorized palliative care development and health care worker training. The findings underscore the pivotal role of health care worker education in elevating palliative care standards. Targeted initiatives equip health care workers with vital skills in pain management, symptom control, and communication. The integration of palliative care into public health systems is important for the sustainability of end-of-life care for terminally ill patients in Africa and around the world.

Place of Death for Adults Receiving Specialist Palliative Care in Their Last 3 Months of Life: Factors Associated With Preferred Place, Actual Place, and Place of Death Congruence.

Objectives: Congruence between the preferred and actual place of death is recognised as an important quality indicator in end-of-life care. However, there may be complexities about preferences that are ignored in summary congruence measures. This article examined factors associated with preferred place of death, actual place of death, and congruence for a sample of patients who had received specialist palliative care in the last three months of life in Ireland. Methods: This article analysed merged data from two previously published mortality follow-back surveys: Economic Evaluation of Palliative Care in Ireland (EEPCI); Irish component of International Access, Rights and Empowerment (IARE I). Logistic regression models examined factors associated with (a) preferences for home death versus institutional setting, (b) home death versus hospital death, and (c) congruent versus non-congruent death. Setting: Four regions with differing levels of specialist palliative care development in Ireland. Participants: Mean age 77, 50% female/male, 19% living alone, 64% main diagnosis cancer. Data collected 2011-2015, regression model sample sizes: n = 342-351. Results: Congruence between preferred and actual place of death in the raw merged dataset was 51%. Patients living alone were significantly less likely to prefer home versus institution death (OR 0.389, 95%CI 0.157-0.961), less likely to die at home (OR 0.383, 95%CI 0.274-0.536), but had no significant association with congruence. Conclusions: The findings highlight the value in examining place of death preferences as well as congruence, because preferences may be influenced by what is feasible rather than what patients would like. The analyses also underline the importance of well-resourced community-based supports, including homecare, facilitating hospital discharge, and management of complex (eg, non-cancer) conditions, to facilitate patients to die in their preferred place.

Co-designing a culturally-sensitive theory-driven advance care planning game with Chinese older adults and healthcare providers

Background: Advance care planning can be challenging because discussing end-of-life care often has negative connotations. Gamification is a novel approach to encourage advance care planning conversations in Western culture. Aim: To co-design a game with multiple stakeholders to promote advance care planning in Chinese communities. Design: A two-phase design guided by the Medical Research Council framework for developing complex interventions was adopted between May 2019 and August 2020. In phase I, a game prototype was developed based on literature review, expert consultation and end-user consultation. In Phase II, the game prototype was tested among end-users and refined according to their feedback and expertise of a multi-disciplinary team through an iterative process. Setting/participants: Experts in the field of aged care, palliative care, life education and game development and Chinese community-dwelling adults aged 60 years or older. Results: A board game called ‘The Five Tastes Found in a Grocery Store’ was developed. The game design was shaped by Bandura’s Self-efficacy theory and feedback from experts and end-users. The participants generally found the gaming experience enjoyable and appreciated the opportunity to discuss end-of-life care openly. Conclusions: This study is the first to develop an evidence-informed, theory-based, culturally sensitive game for promoting advance care planning in the Chinese community using a co-design approach.

Palliative care practices and their relationship to training: A cross-sectional study of community-oriented physicians.

This study aimed to investigate the training methods family physicians (FPs) use to enhance their professional development in palliative care. We also determined the relationship between these methods and palliative care practice. A questionnaire survey was administered to 557 FPs. Palliative care practices were measured using the palliative care self-reported practices scale (PCPS;range 1-5), and associations among the eight indicators of FP palliative care training were considered. Quantile regression analysis was used for the analysis. Valid responses were received from 307 FPs:99.4% of the FPs provided palliative care and home visits, and 92.8% received palliative care training. The PCPS score was higher in participants who reported having received palliative care training (adjusted coefficient, 0.4 [95% CI, 0.12-0.68]; P=0.004). The palliative care training method was found to be significantly associated with the PCPS score "Self-study through literature" (adjusted coefficient 0.18 [95% CI, 0.01-0.34]; P=0.03) and "Reflection on the practices" (adjusted coefficient 0.24 [95% CI, 0.08-0.4]; P=0.004). FPs actively provided palliative care in their communities and used various palliative care training methods for professional development. "Reflection on the practices" and "Self-study through literature" were important elements of community-based palliative care practice.

Enhancing Global Development of Palliative Care: Insights from Country Experts on ATLANTES Observatory's Role.

Background: Despite a steady increase in palliative care (PC)-oriented research, authentic engagement of stakeholders with findings needs to be more used. Objective: This study aimed to explore how ATLANTES Observatory can effectively promote the global development of PC by engaging with stakeholders and addressing their specific needs and priorities. Design: An international e-survey among Observatory collaborators explored key audiences, best ways to reach them, and priority activities. Answers were evaluated according to respondents' roles (Academics, Policymakers, and clinicians) and toward impact on diverse key stakeholders. Correlation between respondents' roles with select products was studied. Results: One hundred fifty-five collaborators participated. The collaborators suggested addressing ATLANTES Global Observatory's activities to policymakers (5,6/7), professional associations (5,2/7), and health care practitioners (4,4/7). Preferred activity to reach all stakeholders is the use of websites and social networks, while particularly for policymakers, academics, and general practitioners, the conduction of atlases and articles stand out. Conclusions: Our study emphasizes prioritizing policymakers and all health care practitioners as key stakeholders in promoting PC and driving global development and integration into health care systems. By leveraging innovative web tools and social networks for dissemination, our aim is to extend the reach of our efforts beyond the PC community.

What we learnt from parents' death experience: A cross-sectional study of death literacy and parent's death quality among adult children in China.

This study aims at investigating the current status of death literacy and parent's death quality among adult children in China. A cross-sectional survey was conducted to explore the associations between death literacy and parent's death quality and to provide evidence for developing public policies for improving the quality of death and end-of-life care for the population in the Greater Bay Area (GBA) of China. A cross-sectional design was adopted. Participants who experienced their father's and/or mother's death were recruited from 5 cities in the GBA of China in 2022. The Good Death Inventory (GDI) and the Death Literacy Index (DLI) were used to investigate the perceived quality of death of the parents of the participants and the death literacy of the participants. A total of 511 participants were recruited. Participants with higher GDI scores were positively associated with DLI scores (p<0.001). Adult children who had close relationships before their parents' death also had higher levels of DLI. This study investigated death literacy among bereaved adult children in China, filling a gap in the investigation of death literacy among Chinese residents. It found that parents' death experience can have a significant impact on the death literacy of adult children, which may affect their understanding and preparation for their own eventual death. Promotion of family discussion on death, development of community palliative care, and improving public death literacy are urgently needed in China.

Palliative Care in Portugal-From Intention to Reality, What Is Yet to Be Accomplished.

This article focuses on exploring the evolution of palliative care in Portugal. Ten years after the approval of its Basic Law, the aim was to investigate the quality of the path followed and the guidelines that could promote its development. Thus, this study sought to identify (a) the goals of the current members of parliament concerning palliative care, (b) the major priorities that should guide the development of palliative care in the coming decade, (c) the facilitating or hindering factors to accelerating the process, and (d) to propose consensually agreed measures for the integral development of palliative care within the health system. The qualitative data analysis was performed through the reading of the literature and interviews conducted via Zoom with several intentionally chosen participants. The data extracted from the previous studies were analyzed in a focus group. The NVivo® 10 was used for the data processing and categorization. Three key themes emerged concerning the current status of palliative care: the policymakers, the health professionals, and the society. This first line of structuring is explained by a second set of categories, namely, (a) the knowledge about palliative care; and (b) palliative care organization from the policymakers' perspective. In the health professionals' domain: (a) knowledge about palliative care, (b) clinical training, and (c) medical specialty. Finally, in society: (a) knowledge about palliative care. Advancing general education, increasing the qualitative training for different health professionals, reformulating the laws supporting them, promoting the flexibility of the implementation methodologies, and establishing a medical specialty are crucial to achieving the proposed goal. This study was not registered.

Euthanasia in Colombia: Experience in a palliative care program and bioethical reflections.

The increased prevalence of advanced-stage chronic diseases has augmented the need for palliative care teams. In Colombia, although the legislation promotes palliative care development, people still die without receiving management from a palliative care team. In addition, judiciary regulations regarding euthanasia have generated public confusion and ethical conflicts among members of the palliative care teams. Therefore, this study aimed to perform a bioethical reflection on the relationship between palliative care and euthanasia supported by data on euthanasia requests in a palliative care program. This reflection is based on retrospective and descriptive observational data, collected in two highly complex hospitals in Bogotá, Colombia. A total of 50 euthanasia requests were identified, of which 62% met the defined criteria, 16% did not, and 22% were not considered by the interdisciplinary committee for the right to die with dignity due to early death. All patients were treated and followed up by a palliative care team until their death. This study considered that palliative care could be a complement management for patients requesting euthanasia based on their experience by supporting the decision-making, alleviating suffering, and providing emotional support in the last days of life.

Palliative Care in Pakistan: Current Landscape, Challenges, Progress and the Way Forward

Due to a rising global trend in ageing, non-communicable diseases and serious health related sufferings, a dire need for palliative care is emerging. Palliative care not only focuses on relieving suffering and improving management of complex health problems of the patient, it addresses it in the context of family dynamics and social settings making it a quint essential need globally. The greatest need of palliative care as reported in the literature is in the lower-middle-income countries (LMIC) where 78% of the global palliative care needs are. This review article will focus on the development of palliative care in Pakistan, a LMIC.

Euthanasie et suicide assisté, deux voies distinctes malgré les apparences

Legislation in France about the end of life has been accruing since 1995, with five laws covering the development of palliative care (1995 and 1999), patients’ rights (2002 and 2005), the ban of unreasonable obstinacy (2005), the development of collegiate decision-making (2005 and 2016), and finally the conditions under which a SPCMJD “deep and continuous sedation until death” may be administered when a patient's pain cannot be alleviated (2016). But despite all this progress and the ongoing development of palliative care over the past 30 years, we must acknowledge that, even today, two out of three patients who would like palliative care but are nearing the end of their lives do not have access to it. In parallel, a social movement that has been active for more than 40 years, the ADMD (Association for the right to die with dignity) is demanding that French citizens have access to an enforceable right to an elective death, as part of their freedom to dispose of their lives. Over the past year, debates on end-of-life issues in French society have been the subject of diverse and often passionate and polemical positions, between supporters and opponents of a right to “active assistance in dying”. This diversity was reflected in the conclusions of a “citizens’ convention”, which brought together 150 French citizens chosen at random between December 2022 and April 2023 to establish a list of viewpoints supposedly representative of French citizens at large. Paradoxically, most of the voices that have been heard over the past two years have lumped together the two main options for administered death, euthanasia and assisted suicide, either condemning them uncompromisingly, or calling for both. On the other hand, few speakers in the various debates sought to distinguish analytically the differences between these two options, by addressing the details and complexities of each. This is all the more surprising given that several foreign examples now enable us to carry out a full-scale “impact study” of the two models. The following analysis, assuming that the law will move beyond the status quo and establish a new right, aims to get to the heart of this alternative by analyzing the consequences of each option from a number of perspectives. Our goal is to shed light on the underlying key facts of the debate and to avoid relying on simplistic preconceptions, moral principles and concepts. Beginning with a review of the legislation approved by the parliament and observing how it has been implemented since coming into force, we will report on what these laws of administered death have meant for all stakeholders. For both options, we will review the issues of representation of the role of the state, of personal freedom, of the impact on healthcare professionals, of repercussions on patients, of patient consent, and how these interventions are monitored. Ultimately, we will assess the quantitative impact of both paths in terms of death ratios. On the basis of some spectacular differences, which make it difficult to remain neutral in this debate, the authors finally propose a compromise that could be reached, one that will satisfy the proponents of a change of legislation, without causing a destabilizing change for all third-party stakeholders.

Palliative care in Malawi: a scoping review

BackgroundUniversal access to palliative care remains a distant goal in many low resource settings, despite the growing evidence of its benefits. The unmet need for palliative care is evident in Africa, but great strides in palliative care development have occurred in several African countries. Located in sub-Saharan Africa, Malawi has been regarded as an exemplar of progress in this area that is achievable in a low resource region. This scoping review examined the literature on the development and state of palliative care in Malawi according to the pillars of health care policy, medicine availability, education, implementation, research activity, and vitality of professionals and advocates.MethodsA scoping review was conducted of the MEDLINE, Embase, Global Health, CINAHL, Web of Science and PsycINFO databases, as well as grey literature sources. Articles were included if they explored any aspect of palliative care in Malawi.Results114 articles were identified that met the inclusion criteria. This literature shows that Malawi has implemented diverse strategies across all pillars to develop palliative care. These strategies include creating a national stand-alone palliative care policy; integrating palliative care into the curricula of healthcare professionals and developing training for diverse service providers; establishing systems for the procurement and distribution of opioids; implementing diverse models of palliative care service delivery; and launching a national palliative care association. Malawi has also generated local evidence to inform palliative care, but several research gaps were identified.ConclusionsMalawi has made considerable progress in palliative care development, although initiatives are needed to improve medicine availability, access in rural areas, and socioeconomic support for patients and their families living with advanced disease. Culturally sensitive research is needed regarding the quality of palliative care and the impact of therapeutic interventions.

Barriers and mechanisms to the development of palliative care in Aceh, Indonesia

The aim of this study was to identify barriers and mechanisms in the development of palliative care in the province of Aceh, North West Indonesia. Several factors, including an ageing population, have increased palliative care needs in the region; however, as with many low to middle income countries (LMICs), palliative care is not well established or integrated into mainstream health care services. Consequently, many people may experience serious health-related suffering (SHRS) at the end-of-life. Qualitative semi-structured interviews and focus groups were conducted with key stakeholders in Aceh, Indonesia and a semi-structured interview guide prompted an exploration of palliative care provision, including barriers and enablers. Interviews were digitally recorded, transcribed, and analysed using the principles of thematic analysis. Eight interviews and two focus groups were conducted with medics (n = 6), nurses (n = 7), hospital management (n = 1) and religious/cultural leaders (n = 2). The findings indicate that all participants recognise a need to reduce SHRS and a growing impetus to embed a culturally salient and sustainable model of palliative care within the Aceh healthcare system. The following four themes indicate key areas for further focus: (1) Local vision and leadership, (2) Prioritisation of palliative care policy and funding, (3) Access to palliative care in community and public services, and (4) supporting palliative care in the cultural context of Sharia law, family, and faith. Future expansion requires the identification of a culturally and socioeconomically salient package of palliative care which operates across rural community and acute care settings and is informed by further evaluation and evidence.