LIVING WITH COPD AND FACING DEATH: INFORMATION AND COMMUNICATION NEEDS ABOUT END-OF-LIFE ISSUES

BackgroundExisting studies suggest that patients with COPD would like to know more about end-of-life issues such as prognosis, advance directives, intubation/mechanical ventilation and what dying might be like. Most want to be involved in end-of-life decision making but feel that doctors should initiate such discussions. Knowing when to discuss these issues can be difficult as the length of time between diagnosis and pre-terminal events varies widely in this group.Aims and objectivesThe aim of this study was to explore COPD patients' understanding, experience, views and information needs regarding end-of-life issues using qualitative methods.MethodsThe study was carried out within a respiratory department of an acute NHS trust in the West Midlands. Patients from four groups were interviewed using a semi-structured interview schedule. 1. New referrals to a COPD clinic. 2. Patients undergoing pulmonary rehabilitation. 3. Patients on long term oxygen therapy. 4. Patients who have required one or more episode of ventilation. Transcribed data were analysed using thematic analysis.ResultsTwelve patients were interviewed. Three major themes were identified: “living with COPD”, “facing death”, and “planning for the end of life”. Patients knew very little about end-of-life issues and advance care planning. Patients were not keen to discuss these issues until they had reached the stage of having already been ventilated. When discussions did occur they were initiated by doctors.ConclusionsPatients with COPD are reluctant to discuss end-of-life issues at a time when such discussions could be most helpful. Further research is required in order to determine how, in practice, information and discussions about end-of-life issues can be successfully introduced at an earlier stage whilst still being acceptable to patients.