Care for patients in the last months of life: the Belgian Sentinel Network Monitoring End-of-Life Care study

Abstract

Background: Population-based studies monitoring end-of-life care are lacking. This study describes involvement of caregivers, access to specialist palliative care, treatment goals (cure, life-prolonging, or palliation), and content of end-of-life care (physical, psychosocial, or spiritual) in a representative sample of dying persons in Belgium.

Methods: We performed a mortality follow-back study in 2005 (Sentinel Network Monitoring End-of-Life Care [SENTI-MELC] study). Data were collected via the nationwide Sentinel Network of General Practitioners, an epidemiological surveillance system representative of all Belgian general practitioners. Each week, all 205 participating practices reported all deaths of patients in their practice and registered the care provided in the final 3 months of life. Sudden, unexpected deaths were excluded.

Results: We studied 892 deaths. General practitioners, nurses or geriatric caregivers, and informal caregivers were often involved in end-of-life care in 76%, 78%, and 75% of cases, respectively. Specialist multidisciplinary palliative care services were provided in 41% of cases. Two to 3 months before death, a palliative treatment goal was in place for 37% of patients, increasing to 81% in the last week of life (P < .001). Two to 3 months before death, physical, psychosocial, and spiritual care was provided to a (very) large extent to 84%, 36%, and 10% of patients, respectively. These numbers increased to 90%, 54%, and 25%, respectively, in the last week of life (P < .001).

Conclusions: In Belgium, most dying patients have both formal and informal caregivers. Provision of specialist palliative care is far less frequent. A transition from cure to palliation often occurs late in the dying process and sometimes not at all. Psychosocial and spiritual care is delivered considerably less frequently than physical care.