Payne, S. (Sheila)
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- Matricea de Competențe de bază în cercetare pentru clinicienii din domeniul îngrijirii paliative(2021) Predoiu, O. (Oana); Mosoiu, D. (Daniela); Payne, S. (Sheila); Opris, A. (Anka); Marina Martínez García; Mason, S. (Stephen); Centeno, C. (Carlos); Arantzamendi-Solabarrieta, M. (María); Simion, A. (Alexandra); Dionisi, M. (Mary); Tserkezoglou, A.J. (Aliki J.); Stanciulescu, L. (Liliana); Ling, J. (Julie)
- The decision-making process for palliative sedation for patients with advanced cancer. Analysis from a systematic review of prospective studies(MDPI, 2022) Menten, J. (Johan); Payne, S. (Sheila); Hasselaar, J. (Jeroen); Centeno, C. (Carlos); Arantzamendi-Solabarrieta, M. (María); Belar, A. (Alazne)Background. The involvement of patients in decision making about their healthcare plans is being emphasized. In the context of palliative sedation, it is unclear how these decisions are made and who are involved in. The aim of the study is to understand how this decision-making is taken. Method. Information from a systematic review on clinical aspects of palliative sedation prospective studies were included. PubMed, CINAHL, Cochrane, MEDLINE, and EMBASE were searched (January 2014–December 2019). Data extraction and analysis regarded: (a) When and by whom the decision-making process is initiated; (b) patient involvement; (c) family involvement and (d) healthcare involvement. Results. Data about decision making were reported in 8/10 included articles. Palliative sedation was reported in 1137 patients (only 16 of them were non-cancer). Palliative sedation was introduced by the palliative care team during the disease process, at admission, or when patients experienced refractory symptoms. Only two studies explicitly mentioned the involvement of patients in decision making. Co-decision between families and the regular health care professionals was usual, and the health care professionals involved had been working in palliative care services. Conclusion. Patient participation in decision making appeared to be compromised by limited physical or cognitive capacity and family participation is described. The possibility of palliative sedation should be discussed earlier in the disease process.
- Integrated palliative care in Europe: a qualitative systematic literature review of empirically-tested models in cancer and chronic disease(BioMed Central, 2016) Menten, J. (Johan); Hughes, S. (Sean); van der Eerden, M. (Marlieke); Payne, S. (Sheila); Garralda, E. (Eduardo); Hasselaar, J. (Jeroen); Centeno, C. (Carlos); Csikos, A. (Agnes); Siouta, N. (Naouma); Radbruch, L. (Lukas); Preston, N. (Nancy); Groot, M. (M.); Van Beek, K. (Karen)Integrated Palliative Care (PC) strategies are often implemented following models, namely standardized designs that provide frameworks for the organization of care for people with a progressive life-threatening illness and/or for their (in)formal caregivers. The aim of this qualitative systematic review is to identify empirically-evaluated models of PC in cancer and chronic disease in Europe. Further, develop a generic framework that will consist of the basis for the design of future models for integrated PC in Europe. Methods: Cochrane, PubMed, EMBASE, CINAHL, AMED, BNI, Web of Science, NHS Evidence. Five journals and references from included studies were hand-searched. Two reviewers screened the search results. Studies with adult patients with advanced cancer/chronic disease from 1995 to 2013 in Europe, in English, French, German, Dutch, Hungarian or Spanish were included. A narrative synthesis was used. Results: 14 studies were included, 7 models for chronic disease, 4 for integrated care in oncology, 2 for both cancer and chronic disease and 2 for end-of-life pathways. The results show a strong agreement on the benefits of the involvement of a PC multidisciplinary team: better symptom control, less caregiver burden, improvement in continuity and coordination of care, fewer admissions, cost effectiveness and patients dying in their preferred place. Conclusion: Based on our findings, a generic framework for integrated PC in cancer and chronic disease is proposed. This framework fosters integration of PC in the disease trajectory concurrently with treatment and identifies the importance of employing a PC-trained multidisciplinary team with a threefold focus: treatment, consulting and training.
- 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.
- An analysis of the experiences of bereaved relatives and health care providers following palliative sedation: a study protocol for a qualitative international multicenter case study(2022) Menten, J. (Johan); Payne, S. (Sheila); Jaspers, B. (Birgit); Hasselaar, J. (Jeroen); Centeno, C. (Carlos); Surges, S. M. (Séverine M.); Arantzamendi-Solabarrieta, M. (María); Van-der-Elst, M. (M.); Preston, N. (Nancy); Brunsch, H. (Holger); Belar, A. (Alazne); Adile, C. (Claudio)Background: Patients at the end-of-life may experience refractory symptoms of which pain, delirium, vomiting and dyspnea are the most frequent. Palliative sedation can be considered a last resort option to alleviate one or more refractory symptoms. There are only a limited number of (qualitative) studies exploring the experiences of relatives of sedated patients and their health care professionals (HCPs). The aims of this study protocol are: 1) to elicit the experiences of bereaved relatives and health care professionals of patients treated with palliative sedation and 2) to explore the understanding of the decision-making process to start palliative sedation across care settings in 5 European countries. Methods: This study protocol is part of the larger HORIZON 2020 Palliative Sedation project. Organisational case study methodology will be used to guide the study design. In total, 50 cases will be conducted in fve European countries (10 per country). A case involves a semi-structured interview with a relative and an HCP closely involved in the care of a deceased patient who received some type of palliative sedation at the end-of-life. Relatives and health care professionals of deceased patients participating in a linked observational cohort study of sedated patients cared for in hospital wards, palliative care units and hospices will be recruited. The data will be analyzed using a framework analysis approach. The frst full case will be analyzed by all researchers after being translated into English using a preprepared code book. Afterwards, bimonthly meetings will be organized to coordinate the data analysis. Discussion: The study aims to have a better understanding of the experiences of relatives and professional caregivers regarding palliative sedation and this within diferent settings and countries. Some limitations are: 1) the sensitivity of the topic may deter some relatives from participation, 2) since the data collection and analysis will be performed by at least 5 diferent researchers in 5 countries, some diferences may occur which possibly makes it difcult to compare cases, but using a rigorous methodology will minimize this risk.
- Πλαίσιο βασικής επάρκειας στην έρευνα για επαγγελματίες ανακουφιστικής φροντίδας(2021) Martinez-Garcia, M. (Marina); Predoiu, O. (Oana); Mosoiu, D. (Daniela); Payne, S. (Sheila); Opris, A. (Anka); Mason, S. (Stephen); Centeno, C. (Carlos); Arantzamendi-Solabarrieta, M. (María); Simion, A. (Alexandra); Dionisi, M. (Mary); Tserkezoglou, A.J. (Aliki J.); Stanciulescu, L. (Liliana); Ling, J. (Julie)
- How to measure the effects and potential adverse events of palliative sedation? An integrative review(SAGE, 2021) Payne, S. (Sheila); Rijpstra, M. (Maaike); Hasselaar, J. (Jeroen); Centeno, C. (Carlos); Arantzamendi-Solabarrieta, M. (María); Vanderelst, M. (Michael); Radbruch, L. (Lukas); Preston, N. (Nancy); Belar, A. (Alazne); Ling, J. (Julie)Background: Palliative sedation is the monitored use of medications intended to relieve refractory suffering. The assessment of palliative sedation has been focused on the assess of the level of consciousness but a more comprehensive approach to assessment is needed. Aim: To understand how the potential effects and possible adverse events of palliative sedation in Palliative Care patients are measured. Design: Integrative review of most recent empirical research. Data sources: Cochrane Library, Embase, Medline, PubMed, and CINAHL were searched (2010–2020) using the terms sedation, palliative care, terminal care, assessment. Limits included studies in English and adults. Inclusion criteria were: scientific assessment papers, effects and complications of palliative sedation; patients with incurable illness. Results: Out of 588 titles, 26 fulfilled inclusion criteria. The Discomfort Scale-Dementia of Alzheimer Type and Patient Comfort Score were used to assess comfort. The Richmond Agitation-Sedation Scale and The Ramsay Sedation Scale are the most used to measure its effect. Refractory symptoms were assessed through multi-symptom or specific scales; except for psychological or existential distress. Delirium was assessed using the Memorial Delirium Assessment Scale and pain through the Critical Care Pain Observation Tool. The use of technical approaches to monitor effects is upcoming. There is lack of measurement of possible adverse events and variability in timing measurement. Conclusions: There are palliative care validated instruments to assess the sedation effect but this review shows the need for a more standardized approach when assessing it. Instruments should be used within an experienced and trained expert, providing a holistic assessment.
- Regulations on palliative sedation: an international survey across eight European countries(Oxford Academic Press, 2023) Menten, J. (Johan); Payne, S. (Sheila); Garralda, E. (Eduardo); Hasselaar, J. (Jeroen); Centeno, C. (Carlos); Csikos, A. (Agnes); Busa, C. (Csilla); Pozsgai, E. (Éva); Radbruch, L. (Lukas); Adile, C. (Claudio); Osztromok-Lukacs, V. (Veronika); Hurducas, F. (Flavia)Background Palliative sedation is a commonly accepted medical practice. This study aims to clarify how palliative sedation is regulated in various countries and whether this may impact its practice. Methods An online survey requesting regulations on palliative sedation was conducted in Belgium, Germany, Hungary, Italy, The Netherlands, Spain, Romania and the UK. Purposive sampling strategy was used to identify clinicians from different medical fields and legal experts for each country. Regulations were analyzed using the principles of the European Association for Palliative Care Framework on palliative sedation. Country reports describing how palliative sedation is regulated were elaborated. Results One hundred and thirty-nine out of 223 (62%) participants identified 31 laws and other regulations affecting palliative sedation. In Spain, 12 regional laws recognize palliative sedation as a right of the patient at the end of life when there are refractory symptoms. In Italy, the law of informed consent and advance directives specifically recognizes the doctor can use deep sedation when there are refractory symptoms. There are also general medical laws that, while not explicitly referring to palliative sedation, regulate sedation-related principles: the obligation of doctors to honour advance directives, informed consent, the decision-making process and the obligation to document the whole process. In Germany, the Netherlands and the UK, palliative sedation is also regulated through professional guidelines that are binding as good practice with legal significance. Conclusions Palliative sedation is considered in the general law of medical practice, in laws regarding the patient’s autonomy, and through professional guidelines.
- Marco de Competencias Básicas de Investigación para Clínicos de Cuidados Paliativos RESPACC(2021-07-15) Martinez-Garcia, M. (Marina); Predoiu, O. (Oana); Mosoiu, D. (Daniela); Payne, S. (Sheila); Opris, A. (Anka); Mason, S. (Stephen); Centeno, C. (Carlos); Arantzamendi-Solabarrieta, M. (María); Simion, A. (Alexandra); Dionisi, M. (Mary); Tserkezoglou, A.J. (Aliki J.); Stanciulescu, L. (Liliana); Ling, J. (Julie)El proyecto financiado por RESPACC ERASMUS+ identificará las competencias de investigación básicas para clínicos de cuidados paliativos. La noción de competencia se refiere a la capacidad de aplicar conocimientos, destrezas y habilidades para realizar con éxito una actividad en el trabajo. Nos enfocamos en mejorar las competencias de investigación básicas en clínicos de equipos multidisciplinarios de cuidados paliativos, tanto a nivel de equipo como individual. Algunas competencias podrían considerarse imprescindibles para realizar una investigación en equipo, pero puede que no sean imprescindibles para todos los miembros del equipo, porque podría ser suficiente que sólo alguien del equipo cuente con dichas competencias para que se lleve a cabo la investigación. OBJETIVO: Identificar un conjunto de competencias de investigación básicas, necesarias para que el equipo paliativo multidisciplinario pueda llevar a cabo un estudio clínico exitoso.
- To what degree is palliative care integrated in guidelines and pathways for adult cancer patients in Europe: a systematic literature review(BioMed Central, 2016) Hodiamont, F. (Farina); Menten, J. (Johan); Hughes, S. (Sean); van der Eerden, M. (Marlieke); Payne, S. (Sheila); Garralda, E. (Eduardo); Hasselaar, J. (Jeroen); Centeno, C. (Carlos); Csikos, A. (Agnes); Siouta, N. (Naouma); Radbruch, L. (Lukas); Preston, N. (Nancy); Radvanyi, I. (Ildiko); Van Beek, K. (Karen)Palliative Care (PC) aims to improve the quality of life for patients with cancer and their families and its benefits have been demonstrated by several studies. The objective of this systematic review is to assess the integration of PC in the content of guidelines/pathways of adult cancer patients in Europe. Methods We included studies of adult patients with cancer published from 01/01/1995 and 31/12/2013 in Europe in six languages. We searched nine electronic databases, hand-searched six journals and also performed citation tracking. Studies were ranked using Emanuel's Integrated Palliative Care (IPC) criteria, a tool containing 11 domains to assess PC content in guidelines. Two reviewers screened the results and narrative synthesis has been employed. Results We identified a total of 28,277 potentially relevant articles from which 637 were eligible for full-text screening. The final review included 60 guidelines and 14 pathways. Eighty percent (80 %) of the guidelines/pathways emphasize a holistic approach and 66 % focus on PC interventions aimed at reducing suffering. Fifty seven percent (57 %) did not discuss referral criteria for PC. Of all studies, five fulfilled at least 10/11 IPC criteria. Differences existed with regard to the referral criteria for bereavement care and the continuous adjustment of goals of care. Conclusion Overall, most of the identified guidelines/pathways highlighted the importance of the holistic approach of IPC. The studies that were found to fulfil at least 10/11 Emanuel's IPC criteria could serve as benchmarks of IPC.