Original Title: Atención a los pacientes en la fase final de la vida: revisión sistemática sobre modelos organizativos en los cuidados paliativos y encuesta a los profesionales sanitarios sobre la situación de los cuidados paliativos en una comarca del País Vasco

Authors' objectives: Improve the knowledge of organisational models of palliative care and determine the opinions of professionals in our health service concerning the care of terminal patients. •  Gather and summarise existing information in the literature concerning the current situation of the care of terminal patients. •  Design, implement and analyse the results of a survey of health professionals in the interior region of Bizkaia concerning the situation of the care of terminal patients.

Authors' results and conclusions: In the automated search performed from January 2008 to June 2011, 1187 articles were found, of which 26 were selected. Of these 26 studies, 22 were excluded. Finally, two systematic reviews that complied with the inclusion criteria (Stevens 2011, García-Pérez 2009) and two clinical trials (Mitchell 2008, Bakitas 2009) were included. An additional systematic review which was found by contacting the authors by e-mail was included. The systematic reviews analysed are of good quality, although the studies included in these reviews and the clinical trials evaluated are heterogeneous, few in number, with small samples and a high dropout rate and therefore their statistical power may prove to be insufficient, preventing any conclusions being drawn as to the superiority of one type of organisational model with regard to the rest. Regarding the survey, the response rate was 75.5 %. 73.7 % see between 1 and 5 patients/year. 83.4 % see these patients when the occasion arises. They report that it is quite common for relations with these patients to generate intense, positive emotions. When the patients are not seen at a primary care level this is usually due to referrals to Home Hospitalisation, due to the loss of patients referred to hospital emergency services, due to the attitudes or beliefs of the patient and/or family and is rarely due to the opinion that the professional is not qualified. The resource they value more highly and report that they use more frequently is that of the doctor-nurse team. Some of the most important difficulties observed include the lack of coordination within Primary Care Teams (PCTs), the lack of hospital admission reports and the fact that the patient is not informed of his/her diagnosis or that palliative care has begun. In the access to hospital services, the greatest difficulty is found In Radiotherapy and the least difficulty in Domiciliary Hospitalisation. 85.2 % believe that a reference consultative team would be of great assistance. They manifest a considerable need for training in all the areas evaluated. Of these, care of the situation during the last days of life is the most frequently area indicated. The most widely used resource for training is written material and the least used resource is periods of practical experience in Palliative Care Units (PCUs). They believe that all the resources evaluated to improve their training are very or quite necessary and of these, they point to theoretical sessions or case studies in centres as the most necessary. CONCLUSIONS Following the analysis of the different studies, it is observed that there is no single organisational model that responds to the needs of terminal patients. However, it seems that the implementation of an organisational model of specific palliative care is more efficient than traditional or conventional forms of care. From the results of the survey, it is deduced that health professionals in primary care teams feel that they are capable of carrying out this activity; they are of good disposition and have had positive experiences in the care of these patients. In general, they have adequate resources in their centres although the coordination within the teams as well as with Continuous Care Points (CCPs) could be improved. The coordination with second and third level resources of palliative care to ensure the continuity of care is good. The biggest problems can be seen in the coordination with hospital services due to difficult accessibility, sometimes to a lack of reports, not taking the care route into account and attitudes especially with regard to patient information. The introduction of computer programmes has improved coordination enormously. Difficulties in patients and their families can also be observed such as the lack of care resources and beliefs about death. A high level of willingness can be observed with regard to continuous training and the methods proposed to carry this out, of which theoretical sessions or case studies in palliative care centres are the most important. The persons who answered the questionnaire believe that it would be very useful to create a reference team or support team in order to tackle the difficulties detected.

Authors' methods: The work of summarising the evidence began with a preliminary search of systematic reviews, following which the review carried out in 2008 by Zimmermann et al. was taken as a reference as we considered that this was a methodologically adequate review with little risk of bias which dealt with the questions posed in our project. This review was updated to June 2011 and a search of the Ovid MEDLINE, EMBASE, CINAHL and PsycINFO was performed. Following the automated search, manual tracking was performed of the bibliographical references included in articles chosen in the automated search as well as in grey literature. Systematic reviews and randomised clinical tests were included, in which a number of different specialised palliative care organisational models were compared to each other or to a customary care model. Measurements of results relating to quality of life, quality of health care, satisfaction with care, well being and economic results and costs were included. The selected articles were analysed separately by two reviewers, who classified these for inclusion or exclusion in accordance with established selection criteria. Any discrepancies were resolved by consensus or with the aid of a third reviewer. Data from the studies included in the project were extracted separately by three groups of researchers. Each group consisted of three researchers, who used the computer application http://www.lecturacritica.com of the Health Technologies Evaluation Agency of the Basque Country (Osteba). The second part of the research project consisted of a descriptive, transversal epidemiological study by means of a specifically designed questionnaire. The survey was made in all Primary Care Units (PCUs) of the Interior Region of Bizkaia of Osakidetza-Basque Health Service during the months of March and April 2011, during presentations of the Clinical Practice Guidelines on Palliative Care of the Ministry of Health and Consumer Affairs. Healthcare professionals (doctors and nurses), who were working at that time in the region, took part in the project.

Project Status: Completed

Year Published: 2013

URL for published report: https://www.euskadi.eus/contenidos/informacion/2013_osteba_publicacion/es_def/adjuntos/Informe%20D-13-10.pdf

English language abstract: An English language summary is available

Publication Type: Rapid Review

Country: Spain

Organisation Name: Basque Office for Health Technology Assessment

Contact Address: C/ Donostia – San Sebastián, 1 (Edificio Lakua II, 4ª planta) 01010 Vitoria - Gasteiz

Contact Name: Lorea Galnares-Cordero

Contact Email: lgalnares@bioef.eus

Copyright: <p>Osteba (Basque Office for Health Technology Assessment) Health Department of the Basque Government</p>