The needs of terminally ill patients at home: directing one's life, health and things related to beloved others

Abstract

This article describes the results of a grounded theory study among terminally ill patients (with a life expectancy of less than three months) at home ( n = 13, aged 39-83). The most commonly recurring theme identified in the analysis is ‘directing’, in the sense of directing a play. From the perspectives of patients in our study, ‘directing’ concerns three domains: 1) directing one's own life; 2) directing one's own health and health care; and 3) directing things related to beloved others (in the meaning of taking care of beloved ones). The patient's directing is affected by impeding and facilitating circumstances: the patient's needs and problems in the physical, psychological and existential/spiritual domain, and the support by family members and providers. Supporting patients and families, stimulating the patients' directing, giving attention to all domains of needs and counselling patients' families in the terminal phase are issues that need attention and warrant further investigation.