Quality of care of the terminally ill: the carer's perspective

Abstract

The experience and opinions of carers of 106 patients dying of cancer in Pontefract Health District were obtained by semistructured interview approximately six months after bereavement. A balanced population of patients who had died either at home or in hospital was selected by quota sampling. The interview investigated the perceived quality of key areas of care and also collected carers' spontaneous comments about the service. These comments were grouped into the following categories related to dimensions of satisfaction with health care: organization of care; interpersonal relationships with health care professionals; communication of information; and the hotel services and environment in hospital. A total of 106 carers, 63% of those contacted, were interviewed and there was no significant difference in response rate between patient categories. Despite general satisfaction with medical treatment, 65% of carers cited inadequate control of symptoms; 58% of patients had not applied for any financial benefits, despite almost universal eligibility. Nearly 60% of patients had died in hospital, but a carer was present at the time of death in only 40% of these cases. Over half the carers had received no support since bereavement. Spontaneous comments about palliative care and relationships with staff were generally favourable, but were highly critical of communication with professionals and of the organization of care, although no carer had lodged any formal complaint. A smaller, local hospital was preferred to the district general hospital. It is concluded that informal carers provide a perspective on the quality of palliative care which complements that of health professionals. Methods of gathering carers' views which do not restrict comment to those areas perceived as important by health professionals should be an integral component of the monitoring and evaluation of all services involved in the provision of palliative care. The results of this study have already proved highly influential in directing the attention of the health authority to areas of service provision where deficiencies had not previously been recognized.