Interactions Between Intensive Care and Palliative Care Are Influenced by Training, Professionals' Perceptions and Institutional Barriers.

Background: There is growing interest in the use of a Palliative care approach in Intensive care. However, it tends to remain inconsistent, infrequent or non-existent, as does its acceptance by intensive care physicians. This study sought to explore the perceptions, level of knowledge, perceived barriers, and practices of physicians regarding palliative care practices (PC) in Intensive Care Units (ICU). Methods: Descriptive-correlational study. Participating physicians working in ICU in Colombia (n = 101) completed an ad hoc questionnaire that included subscales of perceptions, knowledge, perceived barriers, and PC practices in ICU. A Structural Equation Model (PLS-SEM) was used to examine the reciprocal relationships between the measured variables and those that could predict interaction practices between the 2 specialties. Results: First, results from the measurement model to examine the validity and reliability of the latent variables found (PC training, favorable perceptions about PC, institutional barriers, and ICU-PC interaction practices) and their indicators were obtained. Second, the structural model found that, a greater number of hours of PC training, a favorable perception of PC and a lower perception of institutional barriers are related to greater interaction between PC and ICU, particularly when emotional or family problems are detected. Conclusions: PC-ICU interactions are influenced by training, a positive perception of PC and less perceived institutional barriers. An integrated ICU-PC model that strengthens the PC training of those who work in ICU and provides clearer guidelines for interaction practices, may help overcome perceived barriers and improve the perception of the potential impact of PC.

Prevalence and characteristics of patients with heart failure needing palliative care.

BACKGROUND: Few hospitals and heart failure (HF) clinics offer concurrent palliative care (PC) together with life-prolonging therapies. To know the prevalence of patients in HF clinics needing PC and useful tools to recognize them are the first steps to extending PC in those settings. However, it is still unknown whether tools commonly used to identify patients with HF needing PC can correctly distinguish them. Two systematic reviews found that the NECesidades PALiativas (NECPAL) tool was one of the two most commonly used tools to asses PC needs in HF patients. Therefore, we assessed 1) the prevalence of PC needs in HF clinics according to the NECPAL tool, and 2) the characteristics of the patients identified as having PC; mainly, their quality of life (QoL), symptom burden, and psychosocial problems. METHODS: This cross-sectional study was conducted at two HF clinics in Colombia. We assessed the prevalence of PC in the overall sample and in subgroups according to clinical and demographic variables. We assessed QoL, symptom burden, and psychosocial problems using the 12-Item Short-Form Health Survey (SF-12), the Kansas City Cardiomyopathy Questionnaire (KCCQ) and the Edmonton Symptom Assessment System (ESAS). We compared the results of these tools between patients identified as having PC needs (+NECPAL) and patients identified as not having PC needs (-NECPAL). RESULTS: Among the 178 patients, 78 (44%) had PC needs. The prevalence of PC needs was twice as nigh in patients NYHA III/IV as in patients NYHA I/II and almost twice as high in patients older than 70 years as in patients younger than 70 years. Compared to -NECPAL patients, +NECPAL patients had worse QoL, more severe shortness of breath, tiredness, drowsiness, and pain, and more psychosocial problems. CONCLUSION: The prevalence of PC needs in outpatient HF clinics is high and is even higher in older patients and in patients at more advanced NYHA stages. Compared to patients identified as not having PC needs, patients identified as having PC needs have worse QoL, more severe symptoms, and greater psychosocial problems. Including a PC provider in the multidisciplinary team of HF clinics may help to assess and cover these needs.

Redes comunitarias de cuidadores: acompañamiento a la movilización ciudadana para el cuidado compasivo / Community networks: facilitating the community empowerment towards compassionate care

RESUMEN Objetivo Presentar un proceso de aproximación y movilización de la comunidad para la creación de una red barrial de cuidadores en Medellín, Colombia. Métodos La sistematización de la promoción de la red barrial de cuidadores se realizó siguiendo las fases de acompañamiento según la clínica comunitaria: aproximación a la comunidad, generación de formas terapéuticas clínico-comunitarias y comprensión del proceso desde esta perspectiva. Se empleó la rehabilitación basada en la comunidad como método de trabajo. Resultados La necesidad de formación para el cuidado y la organización familiar son los mayores retos de los cuidadores de la comunidad. Los participantes tienen presente la importancia de crear redes de apoyo y han adquirido conocimientos prácticos que les son útiles en la cotidianidad y que sientan las bases para la futura construcción de red. Conclusiones La experiencia de construcción de una red barrial genera reflexiones e interrogantes alrededor de las metodologías utilizadas y de las necesidades comunitarias reales alrededor del cuidado. A pesar de las dificultades en relación con la acción colectiva, la cohesión grupal y la asistencia a los encuentros, el acompañamiento que se realizó ha dejado reflexiones para los cuidadores y conocimientos prácticos en torno al cuidado.

ABSTRACT Objective To present the process of contact and mobilization of a community, seeking to facilitate the development of a caregiving network in Medellín, Colombia. Method The systematization process of the caregiving network's promotion was conducted according to the phases of clinical community involvement: contact with the community, clinical-community therapeutic modalities and analysis of the process. The method emplo-yed was community-based rehabilitation. Results Training needs and family organization towards caregiving are the caregivers' major challenges are. The participants are aware of the relevance of creating support networks and have acquired practical knowledge useful to fulfill their daily needs, which are the foundations for future network development. Conclusions The experience of promoting the development of a community network brings insights and concerns regarding the methods used and the actual caregiving needs of the community. Despite the difficulties encountered with collective actions, group cohesion and assistance to community gatherings, caregivers were able to reflect upon and learn about caregiving networks.

Patient's Perspectives on the Notion of a Good Death: A Systematic Review of the Literature.

CONTEXT: There is no clear definition of what constitutes a good death or its features. Patients, caregivers, physicians, and relatives have different notions of a good death. Discussions have been driven by academic perspectives, with little research available on the patients' perspectives. OBJECTIVES: To explore the notions of a good death from the patients' perspective. METHODS: A systematic literature search was conducted up to November 2017 using CINAHL®, MEDLINE®, EMBASE®, and PsycINFO® databases. Search terms used were "quality of death," "good death," "quality of dying," or "good dying." Scientific empirical studies that included the exploration of the notion of a good death in adult patients with advanced and life-threatening diseases were selected separately by two researchers. Hawker's et al. criteria were used to assess the quality of articles. The analysis was conducted using a thematic analysis. RESULTS: Two thousand six hundred and fifty two titles were identified; after elimination of duplicates, screening, and final selection, 29 relevant publications remained for analysis. Sample populations included patients with terminal diseases (AIDS, cardiovascular disease, and cancer). Core elements for a "good death" included control of pain and symptoms, clear decision-making, feeling of closure, being seen and perceived as a person, preparation for death, and being still able to give something to others; whereas other factors such as culture, financial issues, religion, disease, age, and life circumstances were found to shape the concept across groups. Studies agree on the individuality of death and dying while revealing a diverse set of preferences, regarding not only particular attributes but also specific ways in which they contribute to a good death. CONCLUSIONS: Although sharing common core elements, patients' notions of good death are individual, unique, and different. They are dynamic in nature, fluctuating within particular groups and during the actual process of dying. Formal and informal caregivers should carefully follow-up and respect the patient's individual concepts and preferences regarding death and dying, while attending to shared core elements, to better adjust clinical decisions.

Level of knowledge, emotional impact and perception about the role of nursing professionals concerning palliative sedation.

AIMS AND OBJECTIVES: To explore aspects related to the fulfilment of the role of nurses in palliative sedation. BACKGROUND: Palliative sedation demands knowledge and a proper attitude for maintaining comfort, preserving dignity and contributing to a peaceful death. In some developed countries, nurses have a well-established role in palliative sedation. However, studies on their role and its fulfilment are limited, particularly in the developing world. DESIGN: An exploratory, mixed, qualitative and quantitative study was conducted. A self-administered questionnaire was used to examine the level of knowledge of palliative sedation and the level of confidence in skills and knowledge about palliative sedation. Also, focus groups were conducted to explore the emotional impact and the perceived role of nurses. METHODS: Forty-one nurses from three advanced-care hospitals with palliative care units in Colombia completed the questionnaire. Also, four focus groups were conducted with 22 participants selected from the first phase. RESULTS: A high level of knowledge regarding palliative sedation was found, but the level of confidence in skills was higher than the confidence in knowledge. The participants expressed their belief that their knowledge was derived from experience but believed that it was not enough to fulfil their role with confidence. A negative emotional impact about the patients' condition was found. For some, it served as motivation to provide better care. For others, it was difficult to face, especially when assisting children. They also expressed satisfaction and gratification about providing relief from suffering through sedation. CONCLUSIONS: The role of nursing is essential in palliative sedation. Although the nurses' knowledge is adequate, it primarily derives from experience and not from formal training, which impacts on their perceived confidence and their distress. RELEVANCE TO CLINICAL PRACTICE: Formal training for the optimal fulfilling of the nursing role in palliative sedation is crucial to provide better end-of-life care, particularly in developing countries.

Palliative sedation in advanced cancer patients hospitalized in a specialized palliative care unit.

PURPOSE: To describe the practice of palliative sedation (PS) in patients with advanced cancer in a specialized palliative care (PC) unit in Colombia. METHODS: Descriptive prospective study including all adults with cancer hospitalized under PS in a cancer institute between January and July 2015 in Colombia. Variables examined were diagnosis, physical functioning, symptoms at the start of sedation, medications and dosages used, and type, level, and time of sedation. Descriptive and correlational statistics were obtained. RESULTS: Sixty-six patients were included, 70% of which were women. The patients had an average age of 61 years (range 24-87), and 74% had a Karnofsky Index (KI) of 50% or less. The most frequent diagnosis was breast cancer (22%), and 82% had metastatic cancer. The prevalence of palliative sedation was 2% and the most common symptoms indicating it were dyspnea (59%), delirium (45%), and pain (32%). All patients received midazolam as a sedative. The average time between the interval start and culmination of sedation was 44 h. There was a significant and inverse relationship between functionality and time under sedation. CONCLUSIONS: Palliative sedation is a valid therapeutic option for refractory symptoms causing suffering. The results correspond to international reports and guidelines, which suggests that PS is tailored to the needs of the individual patient while maintaining a high scientific standard, even in a context where PC is under development. However, further development of strategies and clear indications towards the use of PS in Colombia are needed, given its still scarce use.

The influence of psychological factors on the burden of caregivers of patients with advanced cancer: Resiliency and caregiver burden.

ABSTRACTObjective:The aim of our study was to identify the influence of such psychological factors as emotional intelligence and perceived competence on caregiver burden in those who care for patients with advanced cancer. METHOD: A total of 50 informal caregivers completed self-report assessments of resilience, perceived competence, emotional regulation, positive aspects of care, emotional distress, and burden. We conducted a quantitative study with a cross-sectional design. Descriptive statistics were obtained. Associations between the different variables were assessed using nonparametric and multiple regression analyses. RESULTS: Participants were mainly female (88%) and had an average of 20 months of caregiving. Their mean age was 47 years (range = 20-79). More than half of scored high on resilience, positive aspects of caring, and emotional distress, moderately on perceived competence, and low on burden. Most caregivers used cognitive restructuring and social support as coping strategies. Inverse negative correlations were observed among emotional distress, emotional state, and burden with perceived competence and positive aspects of caring (p < 0.05). Significant differences were obtained for emotional distress, cognitive restructuring, and resiliency. Multiple regression analyses demonstrated that perceived competence, resiliency, and positive aspects of caring were the main predictors of burden. SIGNIFICANCE OF RESULTS: Resilience, perceived competence, emotional regulation, and positive aspects of care constitute protective factors against caregiver burden. Taken together, these aspects should be promoted by the healthcare staff in order to facilitate caregiver adaptation and well-being.

Current dilemmas in the assessment of suffering in palliative care.

OBJECTIVE: Although relief from suffering is essential in healthcare and palliative care, few efforts have aimed at defining, operationalizing, and developing standards for its detection, assessment, and relief. In order to accurately explore and identify factors that contribute to suffering, more attention needs to be focused on quality assessment and measurement, not only for assessment purposes but also to test the effectiveness of interventions in relieving suffering. The scope of the present paper is to discuss the strategies that aid in the detection and assessment of the suffering experience in patients with chronic illnesses and/or in palliative care settings, and the dilemmas commonly encountered regarding the quality of available assessment measures. METHOD: A general description of instruments available for suffering assessment is provided. Matters regarding the accuracy of the measures are discussed. Finally, some dilemmas regarding the quality of the measures to screen for and assess suffering are presented. RESULTS: There have been some achievements toward adequate suffering assessment. However, a more robust theoretical background is needed, and empirical evidence aimed at supporting it is required. In addition, further examination of the psychometric characteristics of instruments in different populations and cultural contexts is needed. SIGNIFICANCE OF RESULTS: An interesting number of assessment measures are now available for use in the palliative care setting, employing innovative approaches. However, further examination and validation in different contexts is required to find high-quality tools for detection of suffering and assessment of the results of intervention.

Predictors of suffering in advanced cancer.

CONTEXT: Suffering is a complex experience. Identifying its predictors is useful to signal at-risk patients. OBJECTIVE: To identify suffering predictors in patients with advanced cancer in palliative care. METHODS: A total of 98 patients participated in the study. A semistructured interview examining suffering levels and physical, psychological, social, and spiritual aspects was used. Instruments included Pictorial Representation of Illness and Self Measure (PRISM), Edmonton Symptom Assessment System (ESAS), Detection of emotional distress (DED), and Structured Interview of Symptoms and Concern (SISC). Variance-based structural equation model was used for the data analysis. RESULTS: All measures were valid and reliable. The structural model explained 64% of the variance. Suffering levels were directly determined by psychological and adjustment problems and indirectly determined by physical, psychological, and spiritual aspects and coping strategies. CONCLUSION: Our study supports the proposed theoretical model and signals the important mediating effect of psychological and spiritual variables between physical symptoms and suffering.

Cancer-related fatigue in breast cancer patients after surgery: a multicomponent model using partial least squares-path modeling.

OBJECTIVE: The aim of this study is to examine factors contributing to cancer-related fatigue (CRF) in breast cancer patients who have undergone surgery. METHODS: Sixty women (mean age: 50.0) completed self-rated questionnaires assessing components of CRF, muscular and cognitive functions. Also, physiological and subjective data were gathered. Data were analyzed using partial least squares variance-based structural equation modeling in order to examine factors contributing to CRF after breast surgery. RESULTS: The tested model was robust in terms of its measurement quality (reliability and validity). According to the structural model results, emotional distress (ß = 0.59; p < 0.001), pain (ß = 0.23; p < 0.05), and altered vigilance (ß = 0.30; p < 0.05) were associated with CRF, accounting for 61% of the explained variance. Also, emotional distress (ß = 0.41; p < 0.05) and pain (ß = 0.40; p < 0.05) were related to low physical function and accounted for 41% of the explained variance. However, the relationship between low physical function and CRF was weak and nonsignificant (ß = 0.01; p > 0.05). CONCLUSION: Emotional distress, altered vigilance capacity, and pain are associated with CRF in postsurgical breast cancer. In addition, emotional distress and pain are related to diminished physical function, which, in turn, has no significant impact on CRF. The current model should be examined in subsequent phases of the treatment (chemotherapy and/or radiotherapy) when side effects are more pronounced and may lead to increased intensity of CRF and low physical function.

Assessing suffering in advanced cancer patients using Pictorial Representation of Illness and Self-Measure (PRISM), preliminary validation of the Spanish version in a Latin American population.

PURPOSE: This study aims to adapt the Pictorial Representation of Illness and Self-Measure (PRISM), a practical, nonverbal method with strong psychometric properties, to Spanish and to explore its criterion validity in advanced cancer and palliative care (PC). METHODS: Of the consecutive advanced cancer patients attending a palliative care consultation, 209 were invited to participate. To examine criterion validity, correlations were calculated between the PRISM, the Detection of Emotional Distress scale (DED), the Edmonton Symptom Assessment System (ESAS), the Structured Interview of Symptoms and Concerns (SISC), and the suffering visual analogue scale (VAS). RESULTS: Ninety-eight patients fulfilled inclusion criteria (mean age, 60 years; SD, 14.25; 57 % female). The most frequent types of cancer were lung, breast, and colorectal. Average time since diagnosis was 30 months (2.5 years). PRISM significantly correlated with the Suffering VAS, the DED, and the SISC. It also showed significant correlations with psychosocial factors such as emotional distress, anxiety, loss of control, and perceived coping and spiritual distress items such as loss of dignity and hopelessness, but not with items examining physical symptoms. CONCLUSIONS: The PRISM is a valid measure of suffering in advanced cancer patients. Its Spanish version fits adequately with current definitions and conceptualizations of suffering and may be used in PC settings. Further analysis of other psychometric properties in Spanish-speaking settings is recommended.

Suffering assessment: a review of available instruments for use in palliative care.

BACKGROUND: The prevention and relief of suffering in palliative care are critical to the well-being and quality of life of patients and families facing life-threatening diseases. Many tools to assess different issues in health care are available, but few are specifically designed to evaluate suffering, which is essential for its prevention, early management, and treatment. OBJECTIVE: The purpose of this review was to identify and describe existing instruments developed to assess suffering in palliative care, as well as to comment on their psychometric properties. METHODS: A review of articles indexed in MEDLINE, PsycINFO, and SciELO up to June 2011 was conducted. All articles reporting the development, description, or psychometric properties of instruments that assess suffering were included. An assessment of their psychometric quality was performed following a structured checklist. RESULTS: Ten instruments that assess suffering were identified. Their main features and psychometric properties are described in order to facilitate the selection of the appropriate one given each patient's context. CONCLUSION: By taking into consideration all features of the assessment instruments under review, the evaluation of suffering can be made easier. A wide and ever expanding range of approaches is now available, which facilitates the selection of the suffering-assessment instrument that is best suited to the needs of the specific patient. One of the challenges ahead will be to further analyze the psychometric properties of some existing instruments.

Suffering and distress at the end-of-life.

OBJECTIVE: Suffering frequently occurs in the context of chronic and progressive medical illnesses and emerges with great intensity at end-of-life. A review of the literature on suffering and distress-related factors was conducted to illustrate the integrative nature of suffering in this context. We hope it will result in a comprehensive approach, centered in the patient-family unit, which will alleviate or eliminate unnecessary suffering and provide well-being, when possible. METHODS: An extensive search of the literature on suffering and distress in end-of-life patients was conducted. While the present review is not a systematic one, an in-depth search using the terms 'Suffering', 'Distress', End-of-Life', 'Palliative Care', and 'Terminal illness' was conducted using search engines such as PubMed, PsycINFO, MEDLINE, EBSCO-Host, OVID, and SciELO. RESULTS: Taking into account the comprehensive and integrative nature of suffering, factors related to the physical, psychological, spiritual, and social human dimensions are described. As well, some treatment considerations in the palliative care context are briefly discussed. CONCLUSIONS: Suffering is individual, unique, and inherent to each person. Assessment processes require keeping in mind the complexity, multi-dimensionality, and subjectivity of symptoms and experiences. Optimal palliative care is based on continuous and multidimensional evaluation and treatment of symptoms and syndromes. It should take place in a clinical context where the psychological, spiritual, and socio-cultural needs of the patient-family unit are taken care of simultaneously. A deep knowledge of the nature of suffering and its associated factors is central to alleviate unnecessary suffering.

Barriers and facilitating communication skills for breaking bad news: from the specialists’ practice perspective / Barreras y facilitadores en la comunicación de malas noticias: Perspectiva desde la práctica de médicos especialistas

Introduction: Breaking bad news is one of a physician’s most difficult duties. There are several studies related to the patient’s needs, but few reflect on the doctors’ experience. Materials and method: A descriptive, cross-sectional research was carried out to study issues related to the process of delivering bad news which might act as barriers and facilitating skills from the doctor’s point of view. These issues were identified through a self-administered survey. Results: Participant doctors use different strategies to communicate bad news to their patients. Examples of these strategies are: to be familiar with the patients’ medical history, to ensure that there is enough time, to know the patient’s caregivers and/or relatives, to determine the patient’s level of knowledge about his/her condition, to use non-technical words, to give information in small pieces, to assess the patient’s understanding, to devise a joint action plan, among others. Conclusion: The communication barriers that were identified focused on the emotional issues of the communication process, particularly those related to the recognition of own emotions, and the limited training about communication strategies available to doctors. Consequently, there is a need to implement training programs that provide doctors with tools to facilitate the bad news communication process.

Introducción: La comunicación de malas noticias es una de las tareas más difíciles que deben enfrentar los profesionales de la salud. Existen múltiples estudios acerca de las necesidades del paciente, pero pocos que tengan en cuenta la experiencia de los médicos. Materiales y método: Se realizó una investigación descriptiva, transversal para estudiar aspectos del proceso de comunicación de malas noticias que pueden actuar como barreras y facilitadores desde la percepción del médico; identificados por medio de una encuesta auto-aplicable. Resultados: Los médicos participantes utilizan distintas estrategias durante la comunicación de malas noticias a sus pacientes como: conocer los detalles de la historia clínica, asegurarse de tener tiempo suficiente, conocer a los acompañantes e identificar cuánto sabe el paciente acerca de su situación, utilizar vocabulario sencillo, dar la información por partes, comprobar que el paciente esté comprendiendo, formular en conjunto un plan que se ha de seguir, entre otros. Conclusiones: Las barreras comunicativas identificadas se centraron en los aspectos emocionales del proceso comunicativo, específicamente en lo relacionado con la identificación de emociones propias, y en la limitada formación que reciben los médicos en estrategias comunicativas, lo que genera la necesidad de implementar programas de capacitación que les brinden herramientas para facilitar el proceso de comunicación de malas noticias.