Dying from cancer: the views of bereaved family and friends about the experiences of terminally ill patients

Abstract

Objective: To investigate current experiences of dying cancer patients and to identify areas where improvements in care are needed.

Design: Interviews with principal carers eight weeks after the death of cancer patients who had been routinely notified by hospital staff and had entered a district wide trial of a new service for terminally ill cancer patients.

Setting: An inner London health district.

Subjects: Eighty carers of cancer patients who died between 1987 and 1989. Results: Anorexia, breathlessness, pain, insomnia and depression were all experienced by over 50% of patients in the last week of life. Twenty per cent of patients in pain were reported to have had no effective treatment. Carers of patients dying at home were significantly more likely to feel that the place of death had been right for the patient (97% versus 53%) than carers of patients dying in hospital. Half (36) of carers were dissatisfied with hospital care: the main reason given was that nurses were too busy to provide adequate care (24). Thirty-nine per cent of carers were dissatisfied with information they received from the hospital and eight had wanted to know more about the timing of death. Twenty-seven per cent of 64 carers who had had contact with the general practitioner during the final illness were dissatisfied with care provided by the GP. Twenty per cent of 56 carers who had had contact with district nurses were dissatisfied because of the lack of continuity of care or because nurses appeared rushed. Twenty-nine per cent had had a home help and 10% had had meals on wheels. Fifty-two per cent of carers needing equipment to help them nurse the patient, and 15% of carers who had needed help during the night, had been unable to obtain such help without difficulty, if at all.

Implications: More attention should be paid to ensuring that good symptom control is achieved for all patients. More support from general practitioners, community nursing and social services is needed to enable patients to remain at home when desired. Improvements are needed in the care provided for dying patients on acute wards.