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PURPOSE: The objective of this study is to identify the beliefs, values, perceptions, and experiences of medical oncology, radiation oncology, and clinical haematology professionals about the advance care planning process. METHODS: Qualitative exploratory study. There were four focus groups with 14 nurses and 12 physicians (eight medical oncology, one radiation oncology, three haematology). A reflexive thematic analysis of the data obtained was performed. RESULTS: We identified 20 thematic categories, which we grouped into four themes: lack of knowledge about advance care planning; perception of the advance care planning process: knowledge acquired from practice; barriers and facilitators for the implementation of advance care planning; and communication as a key aspect of advance care planning. CONCLUSIONS: The participants valued advance care planning as an early intervention tool that promotes autonomy. They perceived difficulties in approaching planning due to lack of knowledge, training, and time. They identified the therapeutic relationship with the person, the participation of the person's loved ones, teamwork, and communication skills as essential to ensuring the quality of the process. Finally, they recognised that palliative care professionals provide added value in supporting planning processes.
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Planejamento Antecipado de Cuidados , Hematologia , Humanos , Pesquisa Qualitativa , Grupos Focais , ComunicaçãoRESUMO
In the last decade in Spain, an important push has been given to the development of health policies that define the framework of action in the care of people with advanced chronic diseases. Respect for the autonomy of the patient, shared decision-making processes and advance care planning (ACP) are recognized into health plans as a key aspect in chronic care, frailty, and palliative care. A few but significant number of institutions, local governments, and healthcare professionals from different regions of Spain have started a rationale and roadmap for a new twist in Spain's theoretical, ethical and policy development, promoting ACP implementation into public health care systems. In 2020, a working group founded in 2017, evolved into the "Spanish Association of Shared Care Planning" (AEPCA). The Shared Care Planning (SCP) concept grows up after the two international consensus Delphi studies in 2017 and pretends to shift from the framework of ACP programs to a person-centred care approach. In the last years, several experiences show how professionals are more sensible and interested on the ACP process, but it cannot be said, for now, that it has taken effect in the global Spanish health system. Even both ACP and SCP are being used simultaneously in Spain, each day more people and autonomous communities embrace renewed concept and foundations of SCP, supporting the work of AEPCA on spreading the value of this process into the care of people who are coping with chronic diseases, vulnerability, and frailty.
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Planejamento Antecipado de Cuidados , Fragilidade , Humanos , Espanha , Alemanha , Cuidados Paliativos , Doença CrônicaRESUMO
Primary care (PC) professionals have been considered the most appropriate practitioners for leading Advance care planning (ACP) processes with advanced chronic patients. AIM: To explore how PC doctors' and nurses' self-efficacy surrounding ACP is linked to their sociodemographic characteristics, background and perceptions of ACP practices. METHODS: A cross-sectional study was performed. Sociodemographics, background and perceptions about ACP in practice were collected using an online survey. The Advance Care Planning Self-Efficacy Spanish (ACP-SEs) scale was used for the self-efficacy measurement. STATISTICAL ANALYSIS: Bivariate, multivariate and backward stepwise logistic regression analyses were performed to identify variables independently related to a higher score on the ACP-SEs. RESULTS: N = 465 participants, 70.04% doctors, 81.47% female. The participants had a mean age of 46.45 years and 66.16% had spent >15 years in their current practice. The logistic regression model showed that scoring ≤ 75 on the ACP-SEs was related to a higher score on feeling sufficiently trained, having participated in ACP processes, perceiving that ACP facilitates knowledge of preferences and values, and perceiving that ACP improves patients' quality of life. CONCLUSION: Professionals with previous background and those who have a positive perception of ACP are more likely to feel able to carry out ACP processes with patients.
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Planejamento Antecipado de Cuidados , Autoeficácia , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Percepção , Atenção Primária à Saúde , Qualidade de VidaRESUMO
Background: Perceived self-efficacy in advance care planning (ACP) is frequently used to measure the impact of ACP programs for professionals responsible for advanced chronic patients. A validated ACP Self-Efficacy (ACP-SE) scale is not currently available in Spanish. Objective: To culturally adapt and validate Baughman's ACP-SE scale into Spanish (ACP-SEs). Methodology/Design: An instrumental study was performed in two phases: (1) cultural adaptation of the ACP-SE scale and (2) psychometric properties measurement. Setting/Participants: The survey was sent to 5785 professionals: physicians, nurses, psychologists, and social workers, members of scientific associations in the areas of primary care, geriatrics, and palliative care in Catalonia, Spain. Results: Five hundred thirty-eight questionnaires were obtained, respondents were physicians (69.0%) and nurses (28.4%) and mean age was 47 years (standard deviation [SD] = 10.1). Most were women (79.6%), 68% had >15 years of professional experience, and 80.7% worked in primary care. Internal consistency was high (Cronbach's alpha = 0.95) and showed a unidimensional structure explaining 56.2% of total variance. Mean score was 67.37 (SD = 16.1). Variables associated with greater self-efficacy were previous training (t = -3.23, df = 273.76, p = 0.001), previous participation in ACP processes (t = -6.23, df = 521, p < 0.001), and membership in geriatric or palliative care scientific association (p < 0.001). ACP-SEs positively correlated to other compared scales. Conclusion: The ACP-SE scale demonstrates adequate psychometric properties. This is the first self-efficacy scale for ACP in Spanish. It should facilitate a better understanding of implementation processes related to ACP programs for professionals involved in caring for patients with advanced diseases.
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Planejamento Antecipado de Cuidados , Comparação Transcultural , Idoso , Estudos Transversais , Feminino , Humanos , Pessoa de Meia-Idade , Psicometria , Reprodutibilidade dos Testes , Inquéritos e QuestionáriosRESUMO
OBJECTIVE: To assess the impact after 20 years of a Master's degree in palliative care (MsPC) on the participants' educational outcomes in terms of educational needs satisfaction, motivation, applicability and professional development (PD) in the palliative care (PC) field. METHODS: A cross-sectional study was conducted between October 2016 and February 2017. Participants were students of the MsPC from 13 editions. An ad hoc survey comprising closed-end questions was provided. Variables such as sociodemographic and learning outcomes, based on Kirkpatrick's model, were included. RESULTS: Respondents were 76.6% women, and 60% were between 30 and 50 years of age. Over half of participants were physicians (57.4%), with >15 years of experience (52%). 77% (n=152) reported previous work experience (PWE) in PC, and 23% (n=45) had no PWE. After completing the MsPC, 49% of those without PWE were hired to work in a PC unit, while 84,2% with PWE continued work in a PC-related position. 51.6% professionals with PWE were currently working in other PC areas, such as training or research. High scores were observed on expectations, training needs, motivation in professional practice, PD, applicability and satisfaction, in both groups. Data have shown statistically significant differences on the perceived value of the MsPC to obtain work in the PC field (p=0.006). CONCLUSIONS: This MsPC training programme improves educational outcomes, and promotes PD, regardless of PWE in PC. Interdisciplinary training for all professionals who care for PC individuals is required. To ensure the quality of education in PC programmes, a systematic process of continuous evaluation is needed.
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OBJECTIVES: Generation and dissemination of knowledge is a relevant challenge of palliative care (PC). The Chair Catalan Institute of Oncology (ICO)/University of Vic (UVIC) of Palliative Care (CPC) was founded in 2012, as a joint project of the ICO and the University of Vic/Central of Catalonia to promote the development of PC with public health and community-oriented vision and academic perspectives. The initiative brought together professionals from a wide range of disciplines (PC, geriatrics, oncology, primary care and policy) and became the first chair of PC in Spain. We describe the experience of the CPC at its fifth year of implementation. METHODS: Data collection from annual reports, publications, training and research activities. RESULTS: Results for period 2012-2017 are classified into three main blocks: (1) Programme: (a) The advanced chronic care model (Palliative needs (NECPAL)); (b) the psychosocial and spiritual domains of care (Psychosocial needs (PSICPAL)); (c) advance care planning and shared decision making (Advance care planning (PDAPAL)); and (d) the compassive communities projects (Society involvement (SOCPAL)). (2) Education and training activities: (a) The master of PC, 13 editions and 550 professionals trained; (b) postgraduate course on psychosocial care, 4 editions and 140 professionals trained; and (c) workshops on specific topics, pregraduate training and online activities with a remarkable impact on the Spanish-speaking community. (3) Knowledge-transfer activities and research projects: (a) Development of 20 PhDs projects; and (b) 59 articles and 6 books published. CONCLUSION: Being the first initiative of chair in PC in Spain, the CPC has provided a framework of multidisciplinary areas that have generated innovative experiences and projects in PC.
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Modelos Educacionais , Medicina Paliativa/educação , Pesquisa Biomédica , Humanos , Pesquisa Interdisciplinar , Cuidados Paliativos , Faculdades de Medicina , Espanha , Pesquisa Translacional BiomédicaRESUMO
OBJECTIVE: Implementation of an advance care planning (ACP) program for people with advanced chronic conditions is a complex process. The aims of this paper are to describe (1) the development of the ACP program in Catalonia, Spain, for patients with advanced chronic conditions and complex needs and (2) the preliminary results of the implementation of this program in health and social services. METHOD: The ACP program was developed and implemented in a four-stage process as follows: (1) design and organization of the project; (2) selection of the professionals to carry out the project; (3) creation of four working groups to develop the conceptual model, guidelines, training program, and perform a qualitative evaluation; and (4) project implementation. RESULT: The following deliverables were completed: (1) conceptual framework document; (2) practical guidelines for the application of the ACP; (3) online training course (3,763 healthcare professionals completed the online course, with an overall satisfaction rating of 8.4 on a 10-point scale); and (4) additional training activities (conferences, short courses, and seminars) in between 2015 and 2017. SIGNIFICANCE OF RESULTS: This project was led by the Catalan Ministry of Health. The strengths of the project development include the contribution of a wide range of professionals from the entire region, approval by the Catalan Bioethics Committee and the Social Services Ethics Committee, and the ongoing validation by members of the community. A standardized online training course was offered to all primary care professionals and included as a quality indicator for continuing education for those professionals in the period 2016-2020. The main outcome of this project is the establishment of a pragmatic ACP throughout the region and training of the health and social care professionals involved in the care of advanced chronic patients.
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Planejamento Antecipado de Cuidados , Cuidados Paliativos/métodos , Ensino/normas , Grupos Focais/métodos , Educação em Saúde/métodos , Humanos , Internet , Desenvolvimento de Programas/métodos , Pesquisa Qualitativa , EspanhaRESUMO
OBJECTIVE: To describe the use of health resources of people with advanced chronicity, quantifying and characterizing its cost to suggest improvements in health care models. DESIGN: Observational, analytical and prospective study during 3 years of a cohort of people with advanced chronicity. LOCATION: Three primary care teams (EAP) of Osona, Cataluña. PARTICIPANTS: 224 people identified as advanced patients through a systematic population strategy. MAIN MEASUREMENTS: Age, sex, type of home, end-of-life trajectory; use, type and cost of resources in primary care, emergencies, palliative teams or hospitalization (in acute or intermediate care). RESULTS: Patients made an average of 1.1 admissions per year (average stay=6 days), 74% in intermediate care hospitals. They lived in the community 93.4% of time, carrying out 1 weekly contact with the EAP (45.1% home care). The average daily cost was 19.4euros, the main chapters were intermediate care hospitalizations (36.5%), EAP activity (29.4%) and admissions in acute hospitals (28.6%). Factors determining a potential lower cost are frailty/dementia as trajectory (p<0.001), living in a nursing-home facility (p<0.001) and over-aging (p<0.001). There are certain differences in the behavior of the EAP related to the global cost and to community resources (p<0.05). CONCLUSIONS: Consumption in intermediate hospitalization and primary care is more relevant than stays in acute care centers. Nursing-homes and home-care strategies are important to attend effectively and efficiently, especially when primary care teams get ready for it.
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Doença Crônica/terapia , Serviços de Saúde Comunitária/economia , Utilização de Instalações e Serviços/economia , Utilização de Instalações e Serviços/estatística & dados numéricos , Custos de Cuidados de Saúde , Cuidados Paliativos/economia , Idoso , Estudos de Coortes , Humanos , Índice de Gravidade de Doença , Fatores de TempoRESUMO
Palliative care must be early applied to all types of advanced chronic and life limited prognosis patients, present in all health and social services. Patients' early identification and registry allows introducing palliative care gradually concomitant with other measures. Patients undergo a systematic and integrated care process, meant to improve their life quality, which includes multidimensional assessment of their needs, recognition of their values and preferences for advance care planning purposes, treatments review, family care, and case management. Leaded by the National Department of Health, a program for the early identification of these patients has been implemented in Catalonia (Spain). Although the overall benefits expected, the program has raised some ethical issues. In order to address these challenges, diverse institutions, including bioethics and ethics committees, have elaborated a proposal for the program's advantages. This paper describes the process of evaluation, elaboration of recommendations, and actions done in Catalonia.
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Planejamento Antecipado de Cuidados/ética , Planejamento Antecipado de Cuidados/organização & administração , Doença Crônica/terapia , Enfermagem de Cuidados Paliativos na Terminalidade da Vida/ética , Enfermagem de Cuidados Paliativos na Terminalidade da Vida/organização & administração , Cuidados Paliativos/ética , Cuidados Paliativos/organização & administração , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Encaminhamento e Consulta , Espanha , Inquéritos e QuestionáriosRESUMO
BACKGROUND: A program of Compassionate City or Community (CC) has been designed and developed in the City of Vic (43,964 habitants, Barcelona, Spain), based on The Compassionate City Charter and other public health literature and experiments, with the joint leadership of the City Council and the Chair of Palliative Care at the University of Vic, and as an expansion of a comprehensive and integrated system of palliative care. METHODS: The program started with an assessment of needs of the city as identified by 48 social organizations with a foundational workshop and a semi-structured survey. After this assessment, the mission, vision, values and aims were agreed. The main aims consisted in promoting changes in social and cultural attitudes toward the end of life (EoL) and providing integrated care for people with advanced chronic conditions and social needs such as loneliness, poverty, low access to services at home, or conflict. The selected slogan was "Living with meaning, dignity, and support the end of life". RESULTS: The program for the first year has included 19 activities (cultural, training, informative, and mixed) and followed by 1,260 attendants, and the training activities were followed by 147 people. Local and regional sponsors are funding the initiative. After a year, a quantitative and qualitative evaluation was performed, showing high participation and satisfaction of the attendants and organizations. In the second year, the care for particular vulnerable people defined as targets (EoL and social factors described before) will start with volunteers with more organizations to join the project. CONCLUSIONS: The key identified factors for the initial success are: the strong joint leadership between social department of the Council and the University; clear aims and targets; high participation rates; the limited size of the geographical context; which allowed high participation and recognition; and the commitment to evaluate results.
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Cidades , Serviços de Saúde Comunitária/organização & administração , Colaboração Intersetorial , Modelos Organizacionais , Cuidados Paliativos/organização & administração , Universidades , Humanos , EspanhaRESUMO
OBJECTIVE: To determine whether specific psychosocial interventions can ease discomfort in palliative care (PC) patients, particularly in those with high levels of pain or emotional distress. METHODS: Changes in the psychological parameters of 8333 patients were assessed in a quasi-experimental, prospective, multicenter, single group pretest/post-test study. Psychosocial care was delivered by 29 psychosocial care teams (PSTs; 137 professionals). Pre- and post-intervention changes in these variables were assessed: mood, anxiety, and emotional distress. Patients were classified as complex, when presented with high levels of anxiety, mood, suffering (or perception of time as slow), and distress (or unease, or discomfort), or noncomplex. These groups were compared to assess changes in suffering-related parameters from baseline. RESULTS: Psychosocial interventions reduced patients' suffering. These interventions were more effective in complex patients. CONCLUSIONS: After successive psychosocial interventions, the level of suffering in complex patients decreased until close to parity with noncomplex patients, suggesting that patients with major complexity could benefit most from specific psychosocial treatment. These findings support the importance of assessing and treating patients' psychosocial needs.
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Ansiedade/terapia , Depressão/terapia , Cuidados Paliativos/psicologia , Psicoterapia/métodos , Qualidade de Vida/psicologia , Estresse Psicológico/psicologia , Estresse Psicológico/terapia , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Estudos ProspectivosRESUMO
OBJECTIVE: The integration of palliative care (PC) education into medical and nursing curricula has been identified as an international priority. PC education has undergone significant development in Latin America, but gaps in the integration of PC courses into undergraduate and postgraduate curricula remain. The aim of our review was to systematically examine the delivery of PC education in Latin America in order to explore the content and method of delivery of current PC programs, identify gaps in the availability of education opportunities, and document common barriers encountered in the course of their implementation. METHOD: We carried out a systematic review of peer-reviewed academic articles and grey literature. Peer-reviewed articles were obtained from the following databases: CINAHL Plus, Embase, the Web of Science, and Medline. Grey literature was obtained from the following directories: the International Association for Hospice and Palliative Care's Global Directory of Education in Palliative Care, the Worldwide Hospice Palliative Care Alliance's lists of palliative care resources, the Latin American Association for Palliative Care's training resources, and the Latin American Atlas of Palliative Care. The inclusion criteria were that the work: (1) focused on describing PC courses; (2) was aimed at healthcare professionals; and (3) was implemented in Latin America. The PRISMA checklist was employed to guide the reporting of methods and findings. RESULTS: We found 36 programs that were delivered in 8 countries. Most of the programs were composed of interdisciplinary teams, taught at a postgraduate level, focused on pain and symptom management, and utilized classroom-based methods. The tools for evaluating the courses were rarely reported. The main barriers during implementation included: a lack of recognition of the importance of PC education, a lack of funding, and the unavailability of trained teaching staff. SIGNIFICANCE OF RESULTS: Considerable work needs to be done to improve the delivery of PC education programs in Latin American countries. Practice-based methods and exposure to clinical settings should be integrated into ongoing courses to facilitate learning. A regional platform needs to be created to share experiences of successful training programs and foster the development of PC education throughout Latin America.
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Pessoal de Saúde/educação , Cuidados Paliativos/métodos , Currículo/estatística & dados numéricos , Pessoal de Saúde/organização & administração , Pessoal de Saúde/estatística & dados numéricos , Humanos , América Latina , Universidades/organização & administração , Universidades/estatística & dados numéricosRESUMO
OBJECTIVE: We aimed to describe the overall quantitative and qualitative results of a "La Caixa" Foundation and World Health Organization Collaborating Center Program entitled "Comprehensive Care for Patients with Advanced Illnesses and their Families" after four years of experience. METHOD: Qualitative and quantitative methods were employed to assess the program. Quasiexperimental, prospective, multicenter, single-group, and pretest/posttest methods were utilized to assess the quantitative data. The effectiveness of psychosocial interventions was assessed at baseline (visit 1) and after four follow-up visits. The following dimensions were assessed: mood state, discomfort, anxiety, degree of adjustment or adaptation to disease, and suffering. We also assessed the four dimensions of the spiritual pain scale: faith or spiritual beliefs, valuable faith or spiritual beliefs, meaning in life, and peace of mind/forgiveness. Qualitative analyses were performed via surveys to evaluate stakeholder satisfaction. RESULTS: We built 29 psychosocial support teams involving 133 professionals-mainly psychologists and social workers. During the study period, 8,964 patients and 11,810 family members attended. Significant improvements were observed in the psychosocial and spiritual dimensions assessed. Patients, family members, and stakeholders all showed high levels of satisfaction. SIGNIFICANCE OF RESULTS: This model of psychosocial care could serve as an example for other countries that wish to improve psychosocial and spiritual support. Our results confirm that specific psychosocial interventions delivered by well-trained experts can help to ease suffering and discomfort in end-of-life and palliative care patients, particularly those with high levels of pain or emotional distress.
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Família/psicologia , Cuidados Paliativos/normas , Pacientes/psicologia , Melhoria de Qualidade , Espiritualidade , Adulto , Idoso , Assistência Integral à Saúde/métodos , Assistência Integral à Saúde/normas , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Modelos Teóricos , Cuidados Paliativos/psicologia , Estudos Prospectivos , Pesquisa Qualitativa , Espanha , Inquéritos e QuestionáriosRESUMO
In 2015, the World Health Organization (WHO) Demonstration Project on Palliative Care in Catalonia (Spain) celebrated its 25th anniversary. The present report describes the achievements and progress made through this project. Numerous innovations have been made with regard to the palliative care (PC) model, organization, and policy. As the concept of PC has expanded to include individuals with advanced chronic conditions, new needs in diverse domains have been identified. The WHO resolution on "Strengthening of palliative care as a component of comprehensive care throughout the life course," together with other related WHO initiatives, support the development of a person-centered integrated care PC model with universal coverage. The Catalan Department of Health, together with key institutions, developed a new program in the year 2011 to promote comprehensive and integrated PC approach strategies for individuals with advanced chronic conditions. The program included epidemiologic research to describe the population with progressive and life-limiting illnesses. One key outcome was the development of a specific tool (NECPAL CCOMS-ICO(©)) to identify individuals in the community in need of PC. Other innovations to emerge from this project to improve PC provision include the development of the essential needs approach and integrated models across care settings. Several educational and research programs have been undertaken to complement the process. These results illustrate how a PC program can respond and adapt to emerging needs and demands. The success of the PC approach described here supports more widespread adoption by other key care programs, particularly chronic care programs.
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Cuidados Paliativos , Organização Mundial da Saúde , Pesquisa Biomédica , Educação de Pós-Graduação em Medicina , Projetos de Pesquisa Epidemiológica , Humanos , Cuidados Paliativos/métodos , EspanhaRESUMO
BACKGROUND: The designation of the Catalan Institute of Oncology (Barcelona, Spain) as World Health Organization (WHO) Collaborating Centre for Public Health Palliative Care Programmes (WHOCC-ICO) in February 2008 turns the institution into the first ever center of international reference in regards to palliative care implementation from a public health perspective. The center aims to provide support to countries willing to develop palliative care programs, to identify models of success, to support WHO's policies, and to generate and spread evidence on palliative care. OBJECTIVE: This article describes the WHOCC-ICO's contribution in the implementation of public health palliative care programs and services. The center's main features and future actions are emphasized. RESULTS: At the end of the initial four-year designation period, the organization evaluates the task done to reach its objectives. Such global assessment would take forward the quality of the institution, and generate a revision of its terms of reference for the next designation period. CONCLUSIONS: Based on new evidence, the center has recently decided to expand its scope by adopting a community-wide chronic care approach which moves beyond cancer and focuses on the early identification of patients with any chronic disease in need of palliative care. Moreover, the center advocates the development of comprehensive models of care that address patients' psychosocial needs. This center's new work plan includes additional significant innovations, such as the startup of the first chair of palliative care in Spain. Such a whole new approach responds to the main challenges of current palliative care.