Physical and psychological needs of patients dying from colo-rectal cancer

Sixty-one patients suffering from terminal colo-rectal cancer were interviewed in depth by trained research nurses. The nurses used a semistructured interview, a concerns checklist and the Psychiatric Assessment Schedule to determine patients' key physical complaints, their main concerns and whether or not an affective disorder was present. The interviewers' estimates of these aspects were then compared with the assessments of 48 carers and 58 general practitioners (GPs). The congruence between patients' and carers' reports was reasonable for appetite loss (77%), nausea and vomiting (75%) and pain (72%), and the rate of false positive reporting was low. However, there was much less congruence for breathlessness (48%) and pyrexia (32%). There was even less congruence between the estimates of patients' physical symptoms and GPs' perceptions. The highest congruence was for pain (42%). The congruence was low for appetite loss (8%) and breathlessness (5%). The congruence between patients' and carers' perceptions of the patients' major concerns was low, being at best 33% for patients' concerns about their physical illness. The rate of false positive reporting by carers was high. The carers' major concerns included the patients' illness (47%), the future (33%) and the emotional demands being put on them (23%). Thirteen (22%) of the 59 patients completing a full interview were suffering from an affective disorder. This had been recognized by the GP in only five cases and six patients who had a normal mood were wrongly diagnosed as being depressed. Of the carers interviewed, 22 (46%) considered symptom control had been inadequate and 23 (48%) felt they had no relief from the burden of caring or had too little help. Sixteen (33%) had recently suffered from a major depressive illness, generalized anxiety disorder or adjustment disorder. It is concluded that it is unreliable to rely on carers' proxy reports of the symptoms experienced by terminally ill patients; more accurate personal assessments are needed where possible. It is likely that this will only be achieved by ensuring that those health professionals involved in palliative care have training in the relevant assessment skills.