ObjectivesTo explore what it means for patients to live with chronic obstructive pulmonary disease (COPD) as an incurable and constantly progressing disease.DesignQualitative longitudinal study using narrative and semistructured interviews. This paper presents findings of the initial interviews. Analysis using grounded theory.SettingLung care clinics and community care in Lower Saxony, Germany.Participants17 patients with advanced-stage COPD (Global Initiative for Chronic Obstructive Lung Disease (GOLD) III/IV).FindingsAnalysis shows that these patients have difficulties accepting their life situation and feel at the mercy of the disease, which could be identified as a core-experienced phenomenon. Over a long period of time, patients have only a vague feeling of being ill, caused by uncertain knowledge, slow progress and doubtful attribution of clinical symptoms of the disease (causal conditions). As an action strategy, patients try to maintain daily routines for as long as possible after diagnosis. Both effective standard and rescue medication, which helps to reduce breathlessness and other symptoms, and the feeling of being faced with one's own responsibility (intervening conditions) support this strategy, whereby patients' own responsibility is too painful to acknowledge. As a consequence, patients try to deny the threat to life for a long period of time. Frequently, they need to experience facing their own limits, often in the form of an acute crisis, to realise their health situation. The experience of the illness is contextualised by a continuous increase in limited mobility and social isolation.ConclusionIn order to help patients to improve disease awareness, to accept their life situation and to improve their reduced quality of life, patients may benefit from the early integration of palliative care (PC), considering its multiprofessional patient-centred and team-centred approach. Psychological support and volunteer work, which are relevant aspects of PC, should be appropriate to address psychosocial needs. More research is needed to evaluate how patients could benefit from early PC.

Background Caring for patients with advanced lung cancer is of high relevance in different clinical settings. Lung cancer is among the most common causes of death from malignant neoplasms worldwide; with increasing prevalence and mortality. Aim To get a better understanding of individual patients’ needs, exploring the experiences and meaning of living with advanced lung cancer at the end of life, and to develop strategies for improving patient-centred care in Germany. Design Qualitative explorative interview study with patients, using grounded theory. Setting/Participants A sample of 17 adults living with advanced lung cancer in Lower Saxony/Germany was recruited in two university hospitals. Patients were asked to tell of their experiences of living with advanced lung cancer. The emphasis of this study was the period of palliative tumour therapy. Results The main phenomenon of living with advanced lung cancer is the feeling of having to redefine one’s own existence, such as social roles within and outside the family. The diagnosis trigger powerlessness, which can lead to information passivity, followed by acceptance of aggressive tumour treatment. Patients perceive a high degree of psychological and social stress, without being able to express this. There is a lack of regular appropriate psychosocial care accompanying chemotherapy. Patients ascribe their physical suffering to the side effects of tumour treatment, which may trigger a desire to die. Finally, patients tend to hide their individual needs, even when asked. Conclusions Regarding the patients’ needs, greater emphasis must be placed on psychosocial care as part of the biopsychosocial model to adequately consider the patients’ concerns. Assessments can be helpful to enhance communication at an early stage across all professions into the multi-professional therapy.