A comparison of the palliative care needs of patients dying from chronic respiratory diseases and lung cancer

• Published in: Palliative medicine Vol. 15; no. 4; pp. 287 - 295
• Main Authors: Edmonds, Polly, Karlsen, Saffron, Khan, Saba, Addington-Hall, Julia
• Format: Journal Article
• Language: English
• Published: Thousand Oaks, CA SAGE Publications 01-07-2001; Turpin; Sage Publications Ltd
• Subjects: Aged; Aged, 80 and over; Anesthesia. Intensive care medicine. Transfusions. Cell therapy and gene therapy; Biological and medical sciences; Chronic respiratory diseases; Clinical death. Palliative care. Organ gift and preservation; Communication; Dying; England; Female; Health Care Surveys; Health Services Needs and Demand - statistics & numerical data; Humans; Lung cancer; Lung Neoplasms - complications; Lung Neoplasms - therapy; Male; Medical sciences; Middle Aged; Needs assessment; Palliative care; Palliative Care - statistics & numerical data; Patients; Primary Health Care - statistics & numerical data; Professional-Patient Relations; Pulmonary Disease, Chronic Obstructive - complications; Pulmonary Disease, Chronic Obstructive - therapy; Social Work - statistics & numerical data; Terminal Care - statistics & numerical data; England; lung cancer; terminal care; hospice; palliative care; chronic obstructive pulmonary disease; Human; Anorexia; Respiratory disease; General practitioner; Lung; Malignant tumor; Need; Spouse; Palliative care; Digestive diseases; Intestinal disease; Respiratory distress; Constipation; Comparative study; Public health
• ISSN: 0269-2163; 1477-030X
• DOI: 10.1191/026921601678320278

This paper reports on data from the Regional Study of Care for the Dying, conducted in 1990, and compares symptoms, care and service utilization for patients with chronic lung diseases (CLD) and lung cancer (LC) in the final 12 months of life. Post-bereavement structured interviews were conducted with informal carers of 449 LC patients and 87 CLD patients. The LC patients were significantly younger than those with CLD (P = 0.001) and these respondents were more likely to have been a spouse (P = 0.034). No differences were found in the mean number of symptoms reported by the two groups in the final year or week of life, although the CLD patients were more likely to have experienced these symptoms for longer. Significantly more patients with CLD than LC experienced breathlessness in the final year (94% CLD vs 78% LC, P < 0.001) and final week (91% CLD vs 69% LC, P < 0.001) of life. Significantly more LC patients were reported to have experienced anorexia (76% LC vs 67% CLD, P = 0.06) and constipation (59% LC vs 44% CLD, p = 0.01) in the final year of life. There were no differences in general practitioner use, but LC patients were reported to have received more help from district nurses (52% LC vs 39% CLD, P = 0.025) and from a palliative care nurse (29% LC vs 0% CLD, P < 0.001). More CLD patients were reported to have received help from social services (29% CLD vs 18% LC, P = 0.037). LC patients were reported to be more likely to have known they might die (76% LC vs 62% CLD, P = 0.003) and to have been told this by a hospital doctor (30% LC vs 8% CLD, P = 0.001). Among those that knew, LC patients were told earlier prior to death than CLD patients. This study suggests that patients with CLD at the end of life have physical and psychosocial needs at least as severe as patients with lung cancer.