Original Title: Necesidades en cuidados paliativos de las enfermedades no oncológicas. Un estudio cualitativo desde la perspectiva de profesionales, pacientes y personas cuidadoras

Authors' objectives: – Identify the palliative care needs of persons with chronic, non-oncological diseases with a fatal prognosis. – Determine the differences in the requirements of palliative care between persons with a non-oncological pathology and those suffering from cancer. – Draw up recommendations that will allow an improvement in health and social services in the area of palliative care of non-oncological diseases, in accordance with the needs identified and the examination of any existing barriers.

Authors' results and conclusions: Social and health professionals considered that care at the end of the lives of persons with non-oncological pathologies should be based on the same care as that received in the case of cancer. The main barriers identified were the difficulties involved in diagnosing the final stage of life, the orientation of the health system towards short-term pathologies, the lack of training in palliative care and communication skills and the shortage of resources. Carers pointed out that they were largely self-taught in their work and that care impacts on their health. Continuous decision-making represents one of the main burdens. They expressed a positive appraisal of the humane treatment provided by professionals and through home help. The main barrier identified was the difficulty encountered in accessing the different services. Patients take advantage of the long period that elapses between the appearance of the symptoms and the diagnosis in order to adapt to their illness. They perceive their restricted autonomy as a burden for their families and identify a lack of communication skills among medics and a lack of home care resources. Respect is considered to be a determining factor of good care and they appreciated especially the work of nursing staff. Conclusions and Recommendations These results are coherent with those obtained in previous research, but they are not applicable to persons under 18 years of age. In order to improve the palliative care of non-oncological diseases, it is necessary to modify the definition of the final stage of life and to apply this earlier, simultaneously with the curative therapy. Health services must be reoriented towards the care of chronic diseases and towards an increase in home help. Holistic training and health sciences, the promotion of self-sufficiency in patients through an early care plan, the home clinical history and 24-hour care, the rationalisation of the management of services to provide the same care as that afforded in the case of cancer, the increase in health and social resources and extra-health measures as employment policies adapted to the role of the care should be priority areas to improve the quality of life of persons with chronic pathologies in an advanced state.

Authors' methods: This involved qualitative research carried out in two different geographical areas, the Basque Country and the Canary Islands, from the perspective of patients, families and of health and social care professionals. A non-oncological pathology entitled to palliative care was defined as a chronic disease in an advanced state, other than cancer, the development of which leads to a fatal outcome. Persons of under 18 years of age were excluded.

Project Status: Completed

Year Published: 2012

URL for published report: https://www.euskadi.eus/contenidos/informacion/2012_osteba_publicacion/es_def/adjuntos/e_12_02%20Cuidados%20paliativos.pdf

English language abstract: An English language summary is available

Publication Type: Other

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>