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BACKGROUND: The integral model of Palliative Care recognizes the community as essential element in improving quality of life of patients and families. It is necessary to find a formula that allows the community to have a voice. The aim of this scoping review is to identify barriers and facilitators to engage community in PC. METHODS: Systematic search was conducted in NICE, Cochrane Library, Health Evidence, CINAHL and PubMed database. KEYWORDS: Palliative care, End of life care, community networks, community engagement, public engagement, community participation, social participation, barriers and facilitators. RESULTS: Nine hundred seventy-one results were obtained. Search strategy and inclusion criteria yielded 13 studies that were read in detail to identify factors influencing community engagement in palliative care, categorized into: Public health and public engagement; Community attitudes towards palliative care, death and preferences at the end of life; Importance of volunteers in public engagement programs; Compassionate communities. CONCLUSION: Societal awareness must be a facilitated process to catalyse public engagement efforts. National policy initiatives and regional system support provide legitimacy and focus is essential for funding. The first step is to get a sense of what is important to society, bearing in mind cultural differences and to channel those aspects through health care professionals; connecting the most assistential part with community resources. The process and long-term results need to be systematically evaluated.
Subject(s)
Palliative Care , Humans , Community Participation/methods , Community Participation/psychology , Palliative Care/methods , Palliative Care/psychology , Palliative Care/standards , Terminal Care , Community NetworksABSTRACT
INTRODUCTION: Volunteer support for patients and families at the end of life provides many benefits for the beneficiaries. New technologies could be a necessary resource in the accompaniment although, if there is little literature on palliative care volunteering in general, specifically on volunteering and new technologies, we find little information on the subject.Therefore, the aim of this study is to implement and evaluate a training program for palliative care volunteers using new technologies in order to begin accompanying patients and families in hospital or at home. METHODS AND ANALYSIS: A mixed-method study design will be conducted. We will recruit 20 volunteers and 70 patients in two years. INTERVENTION: training of volunteers in new technologies and volunteer accompaniment of patients/relatives using technologies. The control group will accompany patients as usual. ETHICS AND DISSEMINATION: Ethics approval for the ITV-Pal Programme project was granted by the Malaga Regional Research Ethics Committee. As new knowledge is gained from this project, findings will be disseminated through publications, presentations and feedback to clinicians who are participating in this study. TRIAL REGISTRATION NUMBER: NCT04900103.
Subject(s)
Death , Palliative Care , Humans , Control Groups , Ethics Committees, Research , VolunteersABSTRACT
The current treatment approach for patients in palliative care (PC) requires a health model based on shared and individualised care, according to the degree of complexity encountered. The aims of this study were to describe the levels of complexity that may be present, to determine their most prevalent elements and to identify factors that may be related to palliative complexity in advanced-stage cancer patients. An observational retrospective study was performed of patients attended to at the Cudeca Hospice. Socio-demographic and clinical data were compiled, together with information on the patients' functional and performance status (according to the Palliative Performance Scale (PPS)). The level of complexity was determined by the Diagnostic Instrument of Complexity in Palliative Care (IDC-Pal©) and classified as highly complex, complex or non-complex. The impact of the independent variables on PC complexity was assessed by multinomial logistic regression analysis. Of the 501 patients studied, 44.8% presented a situation classed as highly complex and another 44% were considered complex. The highly complex items most frequently observed were the absence or insufficiency of family support and/or caregivers (24.3%) and the presence of difficult-to-control symptoms (17.3%). The complex item most frequently observed was an abrupt change in the level of functional autonomy (47.6%). The main factor related to the presence of high vs. non-complexity was that of performance status (odds ratio (OR) = 10.68, 95% confidence interval (CI) = 2.81-40.52, for PPS values < 40%). However, age was inversely related to high complexity. This study confirms the high level of complexity present in patients referred to a PC centre. Determining the factors related to this complexity could help physicians identify situations calling for timely referral for specialised PC, such as a low PPS score.
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PURPOSE OF REVIEW: The growing number of patients with terminal and chronic conditions and co-morbidities constitutes a challenge for any healthcare system, to provide effective and efficient patient-centred care at the end of life. Resources are limited, and complexity is rising within patients' situations and healthcare professionals interventions. This review presents the state of art of the role of complexity in specialist palliative care provision. RECENT FINDINGS: Although studies related to complexity in palliative care are still limited, interesting reviews on complexity frameworks in co-morbidity conditions and palliative care are growing more present in current literature. They identify multidimensional issues, resource utilisation, and the relationship between them as fundamental aspects of complexity constructs, helping to define and understand complexity, and to therefore design validated tools to support healthcare professionals identifying the most complex patients, such as Hui's criteria, PALCOM, INTERMED, and IDC-Pal which is presented in this review. SUMMARY: There is an urgent need to guarantee quality and equity of care for all the patients eligible for palliative care, from those who need a palliative care approach to those needing specialist intensive palliative care. Implementing complexity theory into practice is paramount. In this review, complexity science, complexity frameworks, as well as tools evaluating complexity in palliative care are described.
Subject(s)
Palliative Care/organization & administration , Quality of Health Care/organization & administration , Systems Analysis , Terminal Care/organization & administration , Communication , Comorbidity , Cooperative Behavior , Humans , Patient Care Team/organization & administration , Patient-Centered Care/organization & administration , Primary Health Care/organization & administration , Socioeconomic FactorsABSTRACT
INTRODUCCIÓN: Actualmente no existe una definición unánime en cuidados paliativos (CP) del término complejidad. Su correcta y objetiva valoración ayudaría a clasificar al paciente, permitiendo a los profesionales saber si se requieren recursos avanzados o convencionales de CP. OBJETIVOS: Describir la complejidad de los pacientes tributarios de CP en Sevilla mediante el Instrumento Diagnóstico de la Complejidad en Cuidados Paliativos examinando el servicio sanitario prestado. MATERIAL Y MÉTODOS: Estudio observacional descriptivo transversal, con reclutamiento prospectivo. La herramienta Instrumento Diagnóstico de la Complejidad en Cuidados Paliativos se aplicó a 74 pacientes tributarios de CP. Los datos se analizaron con el programa estadístico SSPS versión 20 y se analizaron las variables con el test chi-cuadrado. RESULTADOS: Tanto el equipo de recursos convencionales como el avanzado de CP tratan a pacientes independientemente de su complejidad (p = 0,482). El elemento de complejidad más prevalente fue el cambio brusco del nivel de autonomía funcional (n=27), sin que exista correlación con el equipo implicado. El elemento más prevalente para activar el equipo avanzado de CP es la naturaleza oncológica de la enfermedad (n=39; p = 0,018). CONCLUSIONES: La distribución de la complejidad en los pacientes tratados por recursos convencionales y avanzados de CP en el área estudiada es homogénea. Ello puede ser un indicador de la falta de adecuación de los recursos sanitarios con respecto a la complejidad del paciente. La implementación del Instrumento Diagnóstico de la Complejidad en Cuidados Paliativos podría solventar este problema ya que ayuda a especificar cuándo y por qué se deriva un paciente a CP, evitando el exceso o defecto de dicha derivaciones
INTRODUCTION: There is currently no unanimous definition of the term complexity in palliative care (PC). The correct and objective assessment would help to classify palliative patients to enable health care professionals in their determination whether advanced or conventional PC resources are required. AIM: To describe the palliative patients' complexity, by using the Diagnostic Tool for Complexity in Palliative Care, and to examine the health care service provided. MATERIAL AND METHODS: A descriptive, cross-sectional, observational study with prospective recruiting was conducted by applying the Diagnostic Tool for Complexity in Palliative Care to 74 patients requiring PC in Seville, Spain. Data were analyzed using the statistical program SPSS version 20 and variables were analyzed using the chi-squared test. RESULTS: Both conventional and advanced PC teams treat patients regardless their degree of complexity (p= 0.482). The most prevalent complexity element was sudden change in the level of functional autonomy (n= 27), but there was no correlation with the team involved. The most prevalent element to drive involvement of the advanced PC team was the oncological nature of the disease (n= 39, p= 0.018). CONCLUSIONS: The distribution of complexity in PC patients treated by both conventional and advanced PC teams in the study area is homogeneous. This may be an indicator of the lack of appropriate health care resources as regards the complexity of the patient. Implementing the Diagnostic Tool for Complexity in Palliative Care may solve this problem by specifying when and why a PC patient is referred, and thus avoiding the excess or absence of such referrals
Subject(s)
Humans , Male , Female , Young Adult , Adult , Middle Aged , Aged , Aged, 80 and over , Palliative Care , Terminal Care , Terminally Ill/classification , Chronic Disease/therapy , Patient Selection , Prospective Studies , Health Care Coordination and MonitoringABSTRACT
Objetivo: Adaptacion transcultural al castellano del protocolo de actuacion multidisciplinar de cuidados ofrecidos a pacientes en situacion de ultimos dias Liverpool Care Pathway for the Dying Patient (LCP) Version 11, para su implementacion en un centro de cuidados paliativos. Metodo: El presente proyecto fue desarrollado durante los años 2007-2008, en la Fundacion CUDECA de Malaga, siguiendo los pasos del proceso de acreditacion establecido por The MarieCurie Palliative Care Institute de Liverpool (MCPCIL). Para ello se elabora un informe previo de necesidades del centro solicitante; se tradujo al español siguiendo el protocolo del EORTC Translation Guidance (EORTC Quallity of Live Study Group Translation Procedure. July 1998.EORTC. Brussels). Se testo la adecuacion en el centro de la version del LCP V.11 hospice, con larevision de 40 historias clinicas (HC) de pacientes (..) (AU)
Objective: To translate into Spanish the multidisciplinary protocol for the care of the dying patient, Liverpool Care Pathway for the Dying Patient (LCP) Version 11 and to incorporateits use into a Palliative Care Centre Method: This project took place during 2007-2008 in the Cudeca Foundation of Malaga following the stages set by The Marie Curie Palliative Care Institute de Liverpool (MCPCIL). This involved producing a base review analysis; the document was translated into Spanish following the EORTCTranslation Guidance (EORTC Quality of Live Study Group Translation Procedure. July 1998.EORTC. Brussels). A study of adjustments needed by the centre to implement version 11, of the LCP hospice document was made by reviewing 40 medical histories of patients who had died in the Cudeca hospice (20 retrospective and 20 prospective, once the protocol was in use).Results: Version 11 Hospice of the LCP was translated into Spanish and permission was given for its use in the Cudeca Foundation Hospice by the MCPCIL Institute from January 2009. (LCP V.11for Foundation Cudeca Hospice). The pathway was implemented in the Inpatient unit. There was an improvement in 11 of the 18 of its objectives. Rate of achievement was ≥ 95% in 16 of the objectives Conclusions: The translation into our language gives access to a quality, integrated method for the care of the dying patient (AU)
