Knowledge and expectations of patients in palliative care: issues regarding communication with people affected by life-threatening diseases

Abstract

Objective: Different social norms influence the type and amount of information transmitted to palliative care patients. In Italy disclosure rate is low and medical decisions are often mediated by the family since communication of diagnosis and prognosis is viewed as harmful and brutal. Aims of our study were to assess palliative care patients' knowledge about their diagnosis and prognosis and expectations; and to evaluate possible differences between palliative care patients with and without cancer.

Method: 232 palliative care in-patients participated to the study and were interviewed about their knowledge about his/her diagnosis and prognosis, and about cure and disease expectations, perceived family/social support.

Results: Overall, 45.4% of the patients knew their diagnosis and 35.3% had partial knowledge of it; 39.2% knew their prognosis. When the prognosis was fatal, only few patients explicitly referred to it (22.0%). Expectations during admission to the palliative care unit were: return back home after symptom management (61.6%), increase personal autonomy (51.3%), and pain relief (45.2%). Family/social support was frequently perceived as good (84.0%). Patients with cancer less frequently knew their diagnosis (44.7% vs. 52.9%) and prognosis (37.7% vs. 64.7%) compared to patients with a non-cancer diagnosis.

Conclusions: About half of our patients were unaware of their diagnosis, although, in reality, about one-third of the patients had some knowledge, albeit partial, of their diagnostic and therapeutic course. What to tell or not to tell in palliative care is still controversial and stems from a tailored intervention involving the patient, his/her family and professionals and silence may be more effective than intrusive communication in helping a patient to approach death with tolerable knowledge and dignity.