The palliative care needs of people with intellectual disabilities: a case study

This article describes a case study that aimed to consider the unique needs of a client who has intellectual disabilities and a terminal illness. Data collection included semi-structured interviews with the client and professionals involved in his care. Five broad sets of themes emerged from these interviews. Although these are not unique to the rapidly evolving field of palliative care, they are less familiar within the specialism of intellectual disabilities, i.e. difficulties and delays around diagnosing the illness, consent issues, conflicts between the carers and the family, truth-telling, and the need for professional support. Professionals who work with a person with intellectual disabilities and a terminal illness need to be aware that special issues may arise. The effects of potential problems with comprehension and communication need to be assessed individually. A close collaboration between all professionals, carers, family and the client, and the mutual sharing of expertise, is essential to ensure the best possible care.