Abstract
Recent policy changes within the British National Health Service have encouraged the provision of care within the community. The objective of this study was to explore the needs of informal caregivers of people with non-malignant diseases who wished to remain in their own homes until death. Semi-structured interviews with a non-random sample of 20 bereaved carers from 14 surgeries, their general practitioners, and district nurses were analyzed to discover the extent and quality of the care provided by the primary care team. One quarter of the doctors considered that palliative care applied exclusively to people with cancer. One half of the doctors felt that palliative care was primarily concerned with pain relief. Both doctors and nurses believed that their role was that of coordinating care for the patient. Carers were reluctant to criticize professional caregivers, but the results of this study suggest that carers need help with the burden of caring, including emotional support, advice and information regarding social services and financial benefits, and recognition of their caring role. Palliative care is not exclusive to people with cancer but should be extended to people with non-malignant diseases, encompassing not only symptom relief but also explicitly including emotional or spiritual support, care of the family, and support in preparing for the end of life.
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