Organización paliativa durante la pandemia de la COVID-19 y propuestas para la adaptación de los servicios y programas de cuidados paliativos y de atención psicosocial ante la posibilidad de reactivación de la pandemia y época pos-COVID-19 / Palliative organization during the COVID-19 pandemic and proposals to adapt palliative and psychosocial care services and programs in the face of potential pandemic reactivation and the post-COVID-19 world

INTRODUCCIÓN: La irrupción brusca e intensa de la COVID-19 en nuestra sociedad ha provocado un elevado sufrimiento en pacientes y familias, así como una elevada presión en profesionales y servicios. Sus peculiares características han hecho emerger la atención paliativa como uno de los ejes principales de su abordaje. Este hecho ha provocado una reestructuración de equipos y servicios de cuidados paliativos y atención psicosocial. OBJETIVOS: Describir la respuesta inicial de diversos equipos de cuidados paliativos y atención psicosocial ante la pandemia por la COVID-19, así como elaborar una serie de recomendaciones ante la posibilidad de una nueva reactivación de la pandemia. MATERIAL Y MÉTODOS: Tras una revisión narrativa de la literatura se elaboró un cuestionario con los elementos organizativos más destacados. Este cuestionario se envió a diversos expertos y referentes en cuidados paliativos en España. En una segunda fase, y tras el análisis de los resultados del cuestionario, se elaboraron una serie de recomendaciones. RESULTADOS: Los elementos destacados de la revisión de la literatura fueron: 1) preparación y protección de equipos; 2) presencia de los cuidados paliativos en el sistema; 3) intervención en pacientes agudos; 4) desarrollo de planes asistenciales; 5) provisión de medicación esencial; 6) voluntariado; 7) docencia, y 8) participación de la sociedad. Respondieron 26 de los 31 expertos. Los resultados muestran una respuesta organizativa variable, desde implicación y liderazgo hasta reducción de estructuras, de acuerdo con su posición previa en el sistema. Dentro de las propuestas para afrontar una nueva ola de la pandemia se encuentran: 1) evaluación del estado de los equipos; 2) valorar el grado de adaptación y respuesta a la crisis; 3) conocer las nuevas necesidades; 4) promover una intervención proactiva; y 5) reprogramar los actuales planes de cuidados paliativos. CONCLUSIONES: El presente trabajo muestra la respuesta inicial global de los equipos paliativos ante la pandemia por la COVID-19 y propone una serie de recomendaciones sobre las que plantear intervenciones futuras que respondan a la futura realidad pos-COVID-19

INTRODUCTION: The sudden and intense COVID-19 outbreak has caused in our society a lot of suffering in patients and families alike, and has also put high pressure on professionals and services. Its peculiar characteristics have led to the emergence of palliative care as one of the main axes for its approach. This fact has led to a restructuring of palliative care and psychosocial care teams and services. AIMS: To describe the initial response of various palliative care and psychosocial care teams to the COVID-19 pandemic, as well as to draw up a series of recommendations regarding the possibility of a new reactivation of the pandemic. MATERIAL AND METHODS: After a narrative review of the literature, a questionnaire was prepared with the most outstanding organizational elements. This questionnaire was sent to various experts and opinion leaders in palliative care in Spain. In a second phase, and after analyzing the results of the questionnaire, a series of recommendations were issued. RESULTS: The highlighted elements of the literature review were: 1) equipment preparation and protection; 2) the presence of palliative care in the health system; 3) intervention in acute patients; 4) development of care plans; 5) provision of essential medication; 6) volunteering; 7) teaching; and 8) civil society participation. A total of 26 out of 31 experts responded. The results show a variable organizational response, from involvement and leadership to reduction of structures, according to the the position previously held in the system. Among the proposals to face a new wave of the pandemic are: 1) evaluating the state of equipments; 2) assessing the degree of adaptation and response to the crisis; 3) satisfying new needs; 4) promoting proactive intervention; and 5) reprograming current palliative care plans. CONCLUSIONS: This work shows the initial global response of palliative teams to the COVID-19 pandemic, and issues a series of recommendations on which future interventions to respond to post-COVID-19 reality should be based

Development of a tool to identify and assess psychosocial and spiritual needs in end-of-life patients: The ENP-E scale.

OBJECTIVE: The goal of this study is to describe the development of a new tool, the Psychosocial and Spiritual Needs Evaluation scale Instrumento de Evaluación de Necesidades Psicosociales y Espirituales del Enfermo al Final de Vida (ENP-E), designed to assess the psychosocial needs of end-of-life (EOL) patients. And, secondarily, to describe the face validity and psychometric properties of this instrument in the Spanish-speaking context. METHOD: The scale was developed through a seven-stage process: (1) literature review; (2) expert panel establishment; (3) discussion and agreement on the most relevant dimensions of psychosocial care; (4) description of key indicators and consensus-based questions to evaluate such dimensions; (5) assessment of the scale by external palliative care (PC) professionals; (6) evaluation by patients; and (7) analysis of scale's psychometrics properties. To assess content validity, 30 PC professionals and 20 patients evaluated the questionnaire. To determine psychometric properties, 150 participants completed these scales: the ENP-E; the Hospital Anxiety and Depression Scale; item 15 from the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 15 Palliative; and the Distress Thermometer. RESULT: All respondents evaluated the tool as "excellent." In terms of construct validity, the internal consistency (Cronbach's alpha = 0.74) and temporal stability (test-retest r = 0.74, p < 0.1) were both adequate. On the factorial analysis, four factors (emotional-wellbeing, social support, spiritual, and information) explained 58.4% of the variance. This scale has a sensitivity of 76.3%, specificity of 78.9%, and the cutoff is 28. SIGNIFICANCE OF RESULTS: To provide quality PC to EOL patients, it is essential to determine the psychosocial factors that influence well-being. This requires the use of reliable and specific instruments. The ENP-E is a novel tool that provides a systematic, holistic assessment of the psychosocial needs of EOL patients. Its routine use would allow clinicians to monitor such needs over time. This would, in turn, permit comprehensive, highly individualized interventions to improve effective PC approach.

Effectiveness of Psychosocial Interventions in Complex Palliative Care Patients: A Quasi-Experimental, Prospective, Multicenter Study.

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.

Enhancing psychosocial and spiritual palliative care: Four-year results of the program of comprehensive care for people with advanced illnesses and their families in Spain.

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.

The WHO collaborating centre for public health palliative care programs: an innovative approach of palliative care development.

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.