Can home care maintain an acceptable quality of life for patients with terminal cancer and their relatives?

Abstract

This prospective study was designed to assess whether patients with terminal cancer, and their relatives, find that competent home care sufficiently maintains comfort and helps adjustment. A random sample from a home care service with readily available beds comprised 77 adults and their relatives who were able and willing to be interviewed separately each week. They were asked the nature and degree of current problems and regular assessments were made of some qualities of life including mood, attitude to the condition, perceived help and preferred place of care. These patients had 90% of their care at home; 29% died at home but 30% were finally admitted for one to three days and 41 % for longer. In the final eight weeks, tolerable physical symptoms were volunteered by a mean of 63% each week and psychological symptoms by 17%. Some distress was felt by 11 % of patients; this was usually from pain, depression, dyspnoea, anxiety or weakness, and generally did not persist. Relatives suffered grief, strain or their own ill health. Patients' and relatives' reports generally matched except for the strain on carers. Regular assessments found that 64% of patients thought death certain or probable, and 27% thought it possible. Various proportions coped by optimism, fighting their disease, partial suppression or denial, but 50% reached positive acceptance. Relatives were more aware and accepting. About three-quarters of patients and half the relatives were composed, often enjoying life. Serious depression affected 5% of patients and anxiety 4%, but relatives' manifest depression in the later stages increased to 17% and anxiety to 14%. Many consciously disguised their feelings. Treatment was usually praised but realistic preference for home care fell steadily from 100% to 54% of patients and 45% of relatives. At follow-up most relatives approved of where patients had received care and died.