There is a gap in care for seriously ill patient in transition

Abstract

Introduction Being seriously ill is not only characterized by transitions between different stages of an illness trajectory, but also by recurrent transitions between different levels and sites in the healthcare system. Care transitions is a threat to patient safety as loss of critical clinical information is at risk. Thus, accurate coordination of care is vital. Aim To illuminate experiences of transition between different level and places of healthcare in two different patient’s groups. Method This study is based on empirical data from two research projects; one focusing on experiences of transfer after lung-surgery and one on experience of time when receiving palliative care at home or in a palliative bed unite in hospital or in a nursing home. Data was collected using in-depth interviews with 38 patients; 15 who had undergone lung cancer surgery and 23 who received palliative care. The interviews (30-70 minutes) were audio-taped, transcribed and analyzed using qualitative thematic analysis. Result The main theme was a feeling of uncertainly and a desire for predictability. During the physical transportation between different places (lasting up to 5 hours) patients felt insecure, unprotected and not cared for. They described a weakened and altered body with bothersome symptoms. In this situation, it became clear that the borders of responsibility between caregivers was unclear, where no one seemed responsible for pain management, food or comfort. Patients had to manage their self-care at home shortly after discharge, which was challenging due to lack of individualized information and follow-up. Discussion To ensure continuity of care for seriously ill patients being transferred between different places and levels of healthcare a cross-border responsibility is perforce. Although user participation is catchwords in today’s healthcare policy, healthcare providers still needs to take the full responsibility for care throughout the trajectory of care. This is even more important as critical care increasingly is provided in patient´s private homes. Professionals at different levels must ensure that essential information is delivered and received before the patient arrives at the next level of care. For this to happen, seamless work processes and better communication systems are needed. Lesson learned Different patient groups experiences similar gaps in transitions between different levels and sites in the healthcare system. Conclusion In a time of vulnerability, it becomes important to patents be confident that the unpredictable embodied ailments were taken care of in a predictable manner. It is important for patients to be included in planning of transfer but professional needs to be the responsible for the process. Limitations This is a secondary analysis of data of a limited group of patients. Different patients group may have given other results. Suggestions for further research Meta analysis data from care transitions in different patient care chains is highly warranted. Developing and testing of interventions for serious ill patients in transition is needed.