Receiving home care and communicating about COPD-related concerns and palliative care: A qualitative study of the patient perspectives

Patients with chronic obstructive pulmonary disease (COPD) are underserviced in primaryhealthcare and receive less palliative care than patients with comparable conditions. Thisstudy explored the patient perspective on receiving home care and communicating with professionalcaregivers 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 patientswere conducted. The subsequent qualitative descriptive analysis revealed that the patientsexperienced anxiety and dyspnoea in everyday life and worried about COPD progress andfuture life, death and dying. Patients hesitated to bother professional caregivers with theirconcerns and hid their worries from both family and professionals. Patients neither expectednor experienced that the professional caregivers asked about COPD-related existential concerns.Patients did not fear that talking about concerns and worries would destroy theirhopes, but they did not wish to initiate those conversations themselves. However, patientswished for the professional caregivers to offer an opportunity to talk about possible concernsabout their disease and its impact on future life, death and dying. The patients appreciatedcontinuity in contact with professional caregivers and became insecure when unknown professionalsentered their homes. Providing carer continuity is a major challenge for home careservices. Nevertheless, carer continuity might help overcome interpersonal barriers for initiatingexistential conversations. Implementing simple questions about physical, psychological,social and existential needs may help initiate conversations about palliative care.