Depósito Académico
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- Rapport sur l'évaluation des soins palliatifs au Maroc sur la base des indicateurs de l'OMS(ATLANTES, WHO Collaborating Centre, Institute for Culture and Society, UNAV, 2024) Bastos, F.V. (Fernanda V.); Pons-Izquierdo, J.J. (Juan José); Garralda, E. (Eduardo); Tripodoro, V.A. (Vilma A.); Centeno, C. (Carlos); Berraho, M. (Mohamed); Montero, A. (Álvaro)Les soins palliatifs (SP) sont de plus en plus considérés comme une question de santé mondiale. Ce rapport examine l'état actuel des SP au Maroc et les défis auxquels le pays est confronté pour fournir des SP accessibles et efficaces à ses citoyens. Il a été estimé que plus de 163000 marocains ont besoin SP chaque année. Un consultant national a été recruté pour accompagner le processus d'adaptation des indicateur et une réunion hybride de deux jours a été organisée á Rabat par le Centre collaborateur de l'OMS ATLANTES avec l'OMS-Genève, l'OMS-EMR et l'OMS-Maroc pour examiner et adapter aux réalités culturelles un ensemble d'indicateurs. L'OMS a choisi le Maroc et impliqué les acteurs des secteurs de la santé, de l´enseignement secondaire et de la formation professionnelle de l´enseignement supérieur et l'Association Marocaine des SP. ATLANTES a fourni un outil de collecte suivant le Cadre conceptuel de l´OMS et un système de notation à quatre niveaux : stade précoce, intermédiaire, établi, et avancé. Le rapport souligne les forces et les faiblesses de chaque indicateur et fournit un résumé du niveau de mise en œuvre dans chaque domaine. L'autonomisation des individus et des communautés est mise en évidence par deux indicateurs. Le premier, montre une forte présence nationale et infranationale de défense des SP et de promotion des droits des patients (stade avancé). Le second (stade précoce), indique l'absence d'une ligne directrice nationale concernant la planification préalable des soins. Par rapport aux politiques sanitaires, le Maroc dispose de lignes directrices en matière de SP pour les maladies non transmissibles (MNT). En 2010, Le Maroc a inclus les SP dans les politiques nationales de santé notamment dans le plan national de prévention et de contrôle du cancers et dans la Stratégie Nationale Multisectorielle de Prévention et de Contrôle des Maladies Non Transmissibles 2019–2029. Les services de SP sont inclus sur la liste du paquet minimum de soins dispensés au niveau des soins primaires (stade avancé), mais il n'y a pas encore de mécanisme de suivi pour l'accès à ces services. Même s'il n´existe pas une autorité nationale qui coordonne les SP, rattachée au Ministère de la Santé, les SP sont intégrés séparément dans le cadre des actions des différents services de la division des Maladies Non Transmissibles (stade établi). Concernant la recherche, il y a une Conférence Nationale de SP prévue tous les ans (stade avancé) et, il y a quelques publications scientifiques liés aux SP (stade précoce). Par rapport à utilisation de médicaments essentiels, la consommation annuelle notifiée d'opioïdes en équivalent de morphine orale par personne est de 1,34 milligrammes (stade précoce) et 100 % des établissements de santé, à tous les niveaux, disposent médicaments essentiels contre la douleur et pour les SP. Très peu des patients ayant des besoins palliatifs ont accès à de la morphine orale dans la communauté ou à l'hôpital chaque année (stade précoce). En ce qui concerne la formation, sur 18 écoles de médecine, 18 propose un module obligatoire ou facultatif en SP pour les formations de base (stade avance) ; pourtant il n'y a pas d'un diplôme d'études spécialisées (DES) en médecine palliative destinée aux médecins. Le niveau des prestations de SP (services intégrées) est au stade précoce :Il'y a 12 unités fixes de soins palliatifs et 26 unités mobiles délivrant les soins palliatifs à domicile, (0,03/100 000 habitants) mais il n'existe pas encore de programmes pédiatriques spécialisés à l'échelle nationale. En conclusion, cette valuation a mis en évidence que malgré un engagement politique, professionnel et communautaire croissant, il y existe des carences au niveau éducationnel, de la recherche, de l'accès aux médicaments essentiels et surtout, dans le niveau de disponibilité des équipes de SP, reflétant encore un accès insuffisant aux SP pour les marocaines.
- Revised European Association for Palliative Care (EAPC) recommended framework on palliative sedation: An international Delphi study(SAGE, 2024) Menten, J. (Johan); Mosoiu, D. (Daniela); Payne, S. (Sheila); Cardone, A. (Antonella); Cherny, N. (Nathan); Jaspers, B. (Birgit); Garralda, E. (Eduardo); Hasselaar, J. (Jeroen); Fainsinger, R. (Robin); Centeno, C. (Carlos); Csikos, A. (Agnes); Mercadante, S. (Sebastiano); Surges, S. M. (Séverine M.); Radbruch, L. (Lukas); Preston, N. (Nancy); Brunsch, H. (Holger); Apostolidis, K. (K.); Van-den-Block, L. (Lieve); Ling, J. (Julie)Background: The European Association for Palliative Care (EAPC) acknowledges palliative sedation as an important, broadly accepted intervention for patients with life-limiting disease experiencing refractory symptoms. The EAPC therefore developed 2009 a framework on palliative sedation. A revision was needed due to new evidence from literature, ongoing debate and criticism of methodology, terminology and applicability.Aim: To provide evidence- and consensus-based guidance on palliative sedation for healthcare professionals involved in end-of-life care, for medical associations and health policy decision-makers.Design: Revision between June 2020 and September 2022 of the 2009 framework using a literature update and a Delphi procedure.Setting: European.Participants: International experts on palliative sedation (identified through literature search and nomination by national palliative care associations) and a European patient organisation.Results: A framework with 42 statements for which high or very high level of consensus was reached. Terminology is defined more precisely with the terms suffering used to encompass distressing physical and psychological symptoms as well as existential suffering and refractory to describe the untreatable (healthcare professionals) and intolerable (patient) nature of the suffering. The principle of proportionality is introduced in the definition of palliative sedation. No specific period of remaining life expectancy is defined, based on the principles of refractoriness of suffering, proportionality and independent decision-making for hydration. Patient autonomy is emphasised. A stepwise pharmacological approach and a guidance on hydration decision-making are provided.Conclusions: This is the first framework on palliative sedation using a strict consensus methodology. It should serve as comprehensive and soundly developed information for healthcare professionals.
- How palliative care professionals develop coping competence through their career: a grounded theory.(2024) Centeno, C. (Carlos); Arantzamendi-Solabarrieta, M. (María); Belar, A. (Alazne); Sapeta, P. (Paula)ICS-ATLANTES Background: Palliative care professionals face emotional challenges when caring for patients with serious advanced diseases. Coping skills are essential for working in palliative care. Several types of coping strategies are mentioned in the literature as protective. However, little is known about how coping skills are developed throughout a professional career. Aim: To develop an explanatory model of coping for palliative care professionals throughout their professional career. Design: A grounded theory study. Two researchers conducted constant comparative analysis of interviews. Setting/participants: Palliative care nurses and physicians across nine services from Spain and Portugal (n = 21). Theoretical sampling included professionals who had not continued working in palliative care. Results: Professionals develop their coping mechanisms in an iterative five-stage process. Although these are successive stages, each one can be revisited later. First: commencing with a very positive outlook and emotion, characterized by contention. Second: recognizing one¿s own vulnerability and experiencing the need to disconnect. Third: proactively managing emotions with the support of workmates. Fourth: cultivating an integrative approach to care and understanding one¿s own limitations. Fifth: grounding, care on inner balance and a transcendent perspective. This is a transformative process in which clinical cases, teamwork, and selfcare are key factors. Through this process, the sensations of feeling overwhelmed can be reversed because the professional has come to understand how to care for themselves. Conclusions: The explicative model presents a pathway for personal and professional growth, by accumulating strategies that modulate emotional responses and encourage an ongoing passion for work.
- Report on palliative care development in Uruguay based on the WHO indicators(ATLANTES, WHO Collaborating Centre, Institute for Culture and Society, UNAV, 2023) Béjar, A.C. (Ana Cristina); Bastos, F.V. (Fernanda V.); Della-Valle, A. (Adriana); Garralda, E. (Eduardo); Tripodoro, V.A. (Vilma A.); Centeno, C. (Carlos); Núñez, A. (Ana); Montero, A. (Álvaro)This report describes the current palliative care (PC) situation in Uruguay, highlighting the challenges the country faces in providing PC to over 17,000 Uruguayans who – according to estimates – require PC each year. Commissioned by the WHO - PAHO representation in Uruguay, the WHO Collaborating Centre ATLANTES organised a two-day workshop in Montevideo to examine and adapt the WHO PC development indicators to the Uruguayan context in collaboration with the National PC Program. WHO invited representatives from the health, education, ministries, and social organisations sectors, who worked on a data collection tool whose responses could be categorised into four levels of development: initial, intermediate, established, and advanced. The report highlights each indicator’s strengths and weaknesses and summarises the level of implementation in each area of the country. The empowerment of individuals and communities is explored through two indicators. The first reveals a strong presence of patient and family associations advocating for PC and promoting patient rights, as well as the existence of the Uruguayan Society of Medicine and Palliative Care (SUMCP). The second confirms the existence of a national policy on advance care planning (advanced level). Since 2013, there has been a National PC Plan. PC services are included in the list of health services provided by the primary level of care (with an audit mechanism carried out by the Ministry of Public Health (MSP)), and there is a national authority coordinating PC care crystallised in the National PC Program. The latter depends on and is based on the MSP. Although it has no budget, it has a growing scientific and technical structure with adequate staff (advanced level).
- Report on palliative care development in Benin based on WHO indicators(ATLANTES, WHO Collaborating Centre, Institute for Culture and Society, UNAV, 2023) Bastos, F.V. (Fernanda V.); Benitez, E. (Edgar); Pons-Izquierdo, J.J. (Juan José); Garralda, E. (Eduardo); Tripodoro, V.A. (Vilma A.); Centeno, C. (Carlos); Agbogandé, A. (Anthelme); Gnangnon, F. (Freddy); Montero, A. (Álvaro)Palliative care (PC) is increasingly seen as a global health issue. This report examines the current state of PC in Benin, Africa, and the challenges the country faces in providing accessible and effective PC to its citizens. It has been estimated that more than 62,000 Beninese people need PC every year. The report highlights the importance of PC and the efforts of organisations such as the World Health Assembly, the Lancet Commission and the Astana Declaration to encourage governments to integrate PC into their health plans and make it accessible to all. A two-day hybrid meeting was organised in Cotonou by the WHO Collaborating Centre ATLANTES with WHO-Geneva, WHO-AFRO and WHO-Benin to examine and adapt a set of indicators to cultural realities. The WHO chose Benin and involved stakeholders from the health system, secondary education, vocational training and higher education sectors, as well as the Benin PC Association. ATLANTES provided a data collection tool based on the WHO Conceptual Framework and a four-level rating system: early, intermediate, established and advanced stage. The report highlights the strengths and weaknesses of each indicator and provides a summary of the level of implementation in each area.
- The state of transience, and its influence on the wish to die of advanced disease patients: insights from a qualitative phenomenological study(BioMed Central, 2024) Santesteban, Y. (Yolanda); Saralegui, I. (Iñaki); Centeno, C. (Carlos); Arantzamendi-Solabarrieta, M. (María); Alonso, N. (Nerea); Larkin, P. (Phil); Belar, A. (Alazne); Martínez, M. (Marina)Background: The experience of Wish to Die is common in patients living with Advanced Disease. It has been studied worldwide and qualitative studies have contributed to the understanding of the complexity of the phenomenon of the WTD but a deeper understanding on the individual's views is still needed. The objective of this study was to identify common characteristics of the experience of wish to die in advanced disease. Methods: A phenomenological study was carried out with multicenter participation of patients with advanced disease who had expressed their wish to die to health professionals. Semi-structured interviews were employed to obtain an in-depth perspective of each patient's lived experience. A phenomenological analysis of the data collected was performed to describe and explore the characteristic aspects of the phenomenon under study. Results: Fourteen patients with advanced disease were interviewed. Most of them had cancer. In the analysis of the patients' accounts of their experiences, three common characteristics were identified: a) experiencing a state of transience; b) the attempt to reconnect with oneself; and c) additional disease-related aspects that influence the wish to die. Patients expressed the need for a safe space to address the wish to die and the importance of receiving care that considers both 'being' and 'doing'. Conclusions: Patients with advanced disease and wish to die experience a state of transience where the patient lives and ephemeral state of existence. Interventions focused on reinforcing the intrinsic value of the individual emerge as essential components of a compassionate accompaniment of those facing the wish to die.
- Wish to die and hasten death in palliative care: a cross-sectional study factor analysis(BMJ Publishing Group, 2021) Lama, M. (Marcos); Martinez-Garcia, M. (Marina); Santesteban, Y. (Yolanda); Centeno, C. (Carlos); Arantzamendi-Solabarrieta, M. (María); López-Fidalgo, J. (Jesús); Belar, A. (Alazne)Objectives The wish to die (WTD) is a complex experience sometimes accompanied by intention to hasten death. The aim of this study is to identify the predictive factors for WTD and hastening death intention (HDI) in Spanish patients with advanced illness. Methods This is a subanalysis of a larger cross-sectional study conducted on patients experiencing advanced illness (N=201). Sociodemographic data and data related to symptom burden (Edmonton Symptom Assessment System-Revised), depressive and anxious symptoms (Hospital Anxiety and Depression Scale), demoralisation (Spanish version of the Demoralisation Scale), perceived loss of dignity (Patient Dignity Inventory) and WTD (Assessing Frequency and Extent of Desire to Die) were collected. The analysis used univariate and multivariate logistic regression. Results The prevalence of WTD in the sample was 18%, with 8 out of 36 patients reporting HDI. The independent factors predictive of WTD were (1) knowledge of approximate prognosis (OR=4.78; 95% CI 1.20 to 10.8; p=0.001); (2) symptom burden (OR=1.05; 95% CI 1.00 to 1.09; p=0.038); and (3) the Demoralisation Scale subsection ‘lack of meaning and purpose in life’ (OR=1.61; 95% CI 1.30 to 1.99; p=0.000). An independent predictive factor for HDI was the Demoralisation Scale subsection ‘patients’ distress and coping abilities’ (OR=1.47; 95% CI 1.04 to 2.08; p=0.028), while having religious beliefs was a protective factor (OR=0.13; 95% CI0.17 to 0.97; p=0.047). Conclusions Demoralisation was found to be the only common triggering factor for WTD and HDI, although experiences share certain features. Identification of the predictive factors for WTD and HDI may contribute to their prevention and management.
- Cross-sectional survey of the wish to die among palliative patients in Spain: one phenomenon, different experiences(2021) Lama, M. (Marcos); Martinez-Garcia, M. (Marina); Santesteban, Y. (Yolanda); Olza-Moreno, I. (Inés); Rullán, M. (María); Centeno, C. (Carlos); Arantzamendi-Solabarrieta, M. (María); López-Fidalgo, J. (Jesús); Belar, A. (Alazne); Breeze, R. (Ruth)Objective: Cultural backgrounds and values have a decisive impact on the phenomenon of the wish to die (WTD), and examination of this in Mediterranean countries is in its early stages. The objectives of this study were to establish the prevalence of WTD and to characterise this phenomenon in our cultural context. Methods: A cross-sectional study with consecutive advanced inpatients was conducted. Data about WTD (Assessing Frequency & Extent of Desire to Die (AFFED) interview) and anxiety and depression (Edmonton Symptom Assessment System-revised (ESAS-r)) were collected through two face-to-face clinical encounters. Data were analysed with descriptive statistics, χ2 and analysis of variance. Results: 201 patients participated and 165 (82%) completed both interviews. Prevalence of WTD was 18% (36/201) in the first interview and 16% (26/165) in the second interview (p=0.25). After the first interview, no changes in depression (p=0.60) or anxiety (p=0.90) were detected. The AFFED shows different experiences within WTD: 11% of patients reported a sporadic experience, while 7% described a persistent experience. Thinking about hastening death (HD) appeared in 8 (22%) out of 36 patients with WTD: 5 (14%) out of 36 patients considered this hypothetically but would never take action, while 3 (8%) out of 36 patients had a more structured idea about HD. In this study, no relation was detected between HD and frequency of the appearance of WTD (p=0.12). Conclusions: One in five patients had WTD. Our findings suggest the existence of different experiences within the same phenomenon, defined according to frequency of appearance and intention to hasten death. A linguistically grounded model is proposed, differentiating the experiences of the ‘wish’ or ‘desire’ to die, with or without HD ideation.
- Palliative care stay room – designing, testing and evaluating a gamified social intervention to enhance palliative care awareness.(Springer Nature, 2023-04-20) Rivas-Borrell, S. (Sonia); Benitez, E. (Edgar); Olza-Moreno, I. (Inés); Centeno, C. (Carlos); Sandgren, A. (Anna); Reigada, C. (Carla); Hermida-Romero, S. (Santiago); Carvajal, A. (Ana); Gómez-Baceiredo, B. (Beatriz); Ripoll, G. (Guillem)The message of palliative care can be promoted using creative thinking and gamification. It can be an innovative strategy to promote changes in behaviour, promote thinking, and work on skills such as empathy. The aim of this article is to design, test and evaluate a gamified social intervention to enhance palliative care awareness among younguniversity students from non-health background.
- A reflection on the essence of gratitude in palliative care: healing in severe disease and professional affirmation through accompanying patients until the end(Sage, 2023) Aparicio, M. (María); Julián, V. (Victoria) de; Riojas, M. (Mariana); Centeno, C. (Carlos); Arantzamendi-Solabarrieta, M. (María); Crespo, M. (Mariano); Sánchez-Migallón, S. (Sergio)Background: Gratitude has sparked interest in the world of health. It is considered as a personality characteristic or as an emotion. However, little has been explored in the context of the interpersonal relationship of caring. An exploration in the context of end of life is ground-breaking. Objectives: This study analyses and reflects on the object of gratitude from the perspective of both the persons being cared for and the professionals providing health care. What are patients and their family members grateful for in palliative care? What is the reason for gratitude? What do these health professionals perceive when there is gratitude? These questions were answered considering the gratitude generated in health care encounters, not gratitude as personality trait. Methods: The phenomenological approach was used starting from lived clinical experiences. In the light of the dialogue between clinical experiences and philosophy, this study proposes an explanation of the 'real' or essential object of gratitude in palliative care. It was conducted within the context of palliative care. The study materials were manifestations of gratitude expressed or felt in clinical encounters and published in newspapers or shared in daily encounters. These were the basis for analysis and reflection and interdisciplinary dialogue. Findings: The analyses performed indicated healing or deep relief in serious diseases as objects of gratitude according to patients' perspective, and professional self-affirmation until the end according to the professionals' perspective. Conclusion: The two perspectives shared an important common fact, namely, the need to consider the persons in their entirety, and the importance of not losing sight of the value they have. This concept would characterize the nature of gratitude, its object being the 'objective good' for patients, family members, and palliative care professionals.