The needs of patients dying of chronic obstructive pulmonary disease in the community

Abstract

Background: Ninety percent of the last year of life of a terminally ill patient is spent at home, but possible drawbacks to domicillary terminal care have been suggested. Most previous studies have taken place in secondary care settings, and have often obtained relatives' views of patients' needs rather than those of the patient.

Objectives: Our aim was to determine the needs of patients dying in primary care from chronic obstructive pulmonary disease (COPD).

Methods: Semi-structured interviews were undertaken with 16 patients who were having maximal therapy for COPD, who were thought likely to die in the year following the commencement of the study.

Results: Five themes were identified. (i) Patients' information needs and the future course of their illnesses. Information needs were often variable and patients were sometimes unwilling to contemplate the future. (ii) The impact of symptoms on patients' lives. Dyspnoea was a particular problem. (iii) Attitudes towards and opinions on smoking, which many acknowledged as being causal. (iv) Attitudes to help received. Many patients relied on their family; most patients felt their doctors were helpful although some expressed reservations. (v) Patients' expressed needs. These usually focused on mobility, and many patients would not express needs even when prompted.

Conclusion: Poor symptom control remains an important cause of distress. The low number of expressed needs may reflect patients' unwillingness to appear ungrateful, but the variability of information needs emphasizes the importance of an individual approach to patients with an apparently homogenous disease