Rehabilitation in Palliative care - time to see the patient behind the disease: A questionnaire-based survey

Introduction: Italy’s regulatory process of Palliative care started with Law n. 39/99. It was updated with Law n. 38/2010 and subsequent implementing acts for the development and ensuring of the Palliative care and Pain therapy care system. Scope review suggests the lack of evidence-based models for appropriate integration of rehabilitation in Palliative care. Nevertheless, healthcare professionals feel untrained in defining rehabilitation goals and interventions, and in managing unfavourable prognoses due to the lack of communication skills. Objective: The primary aim of this study was to explore palliative health workers’ attitudes and perceptions toward rehabilitation in palliative care. Secondly, this survey aims to explore the relationship between the characteristic features of the responders and their attitudes toward palliative rehabilitation. Methods: This is a descriptive survey based on a questionnaire. A structured, web-based questionnaire was designed using the scoping review findings. Questionnaire analysis was performed using descriptive statistics, thematic analysis and Pearson's chi-square test (χ2) was used to estimate the link between the characteristics of the responders and their attitude about palliative rehabilitation. Results: A total of 50 responses were collected from 26 physiotherapists (52%), 18 physicians (36%), 3 nurses (6%), 2 psychologists (4%) and 1 occupational therapist (2%). The majority of respondents were women (n =42; 84%). For 74% (n=37) of participants, palliative care patients have rehabilitation needs. The major problem identified by 84% of participants was communication with patients and their families, in order to define rehabilitation purposes and to prevent misunderstanding or false hope. The majority of the responders (94%) agreed that rehabilitators’ primary intervention is represented by managing pain, dyspnoea and fatigue. A significant difference (p < .05) between Italian and foreign healthcare workers’ attitudes toward the principles of palliative rehabilitation emerged. Interventions like «Education of patients, families and caregivers» (p= 0,008) and «Addressing psycho-social and emotional needs of patients and families» (p = 0.024) seem to be more relevant for Italian health workers. Discussion: Data supports a lack of communication skills and of evidence-based models for palliative rehabilitation, in order to identify clearly rehabilitation goals and interventions appears to be one of the greatest problems for rehabilitators when approaching patients with life-threatening diseases. Italian healthcare professionals give greater importance to the education of patients, families and caregivers, highlighting the value of the family in a family-centered nation like Italy. Moreover, maybe it leads to considering how long we could really rely on families for the management of very frail patients who need complex care. Conclusion: This study presents common issues that rehabilitators may encounter working in palliative care and offers suggestions on how to deal with these difficulties for those approaching to the world of palliative care. Nevertheless, it may be it could be a hint about the themes to be presented in a university course.