Patients with chronic obstructive pulmonary disease (COPD) are underserviced in primary healthcare and receive less palliative care than patients with comparable conditions. This study explored the patient perspective on receiving home care and communicating with professional caregivers about concerns and worries in everyday life with COPD. In 2013–2014, field observations of 13 home care visits followed by individual interviews with the patients were conducted. The subsequent qualitative descriptive analysis revealed that the patients experienced anxiety and dyspnoea in everyday life and worried about COPD progress and future life, death and dying. Patients hesitated to bother professional caregivers with their concerns and hid their worries from both family and professionals. Patients neither expected nor experienced that the professional caregivers asked about COPD-related existential concerns. Patients did not fear that talking about concerns and worries would destroy their hopes, but they did not wish to initiate those conversations themselves. However, patients wished for the professional caregivers to offer an opportunity to talk about possible concerns about their disease and its impact on future life, death and dying. The patients appreciated continuity in contact with professional caregivers and became insecure when unknown professionals entered their homes. Providing carer continuity is a major challenge for home care services. Nevertheless, carer continuity might help overcome interpersonal barriers for initiating existential conversations. Implementing simple questions about physical, psychological, social and existential needs may help initiate conversations about palliative care.

Keywords: Community nursing, chronic obstructive pulmonary disease, field observations, individual interviews, palliative care, primary care