Symptoms and problems in the final week of life in primary care in Belgium

Aim: There is little representative information concerning problems, symptoms and clinical status
of patients dying at home under the care of their GP. This study describes main diagnosis,
comorbidities, functional status, and physical and psychological symptom burden in the last week
of life among Belgian patients dying at home.
Methods: In 2005, as part of the SENTI-MELC Study, retrospective face-to-face structured
interviews were performed with GPs concerning 260 cases of non-sudden deaths at home.
These 260 deaths were identified on basis of a large-scale representative mortality follow-back
registration on end-of-life care provision in Belgium using the sentinel network of GPs, a
surveillance system representative of all Belgian GPs.
Results: Interviews were obtained about 205 patients (response rate= 79%). Sixty percent
suffered from cancer. Most prevalent comorbidities were hypertension (51%) and heart
complaints (34%). In the last week of life, 85% had a functional status of full invalidity (ECOG
performance scale). GPs judged shortness of breath and lack of energy as bothersome
symptoms in 55% and 64% of cases respectively (MSAS-GDI). Lack of appetite, pain and feeling
drowsy were judged as bothersome in 41%, 33% and 28% of cases respectively. Feeling sad
and worrying were indicated as highly frequently or almost constantly present for 69% of patients.
Shortness of breath, lack of energy and feeling sad were seen as most difficult to manage for
GPs.
Conclusion: Most patients dying at home in Belgium had limited functional status in the last
week of life. About half experienced one or more burdening physical and psychological
symptoms. A significant minority experienced high symptom burden concerning shortness of
breath, lack of energy, sadness and worrying. The latter symptoms were indicated by GPs as the
most difficult to treat, making improved support and training for the treatment of these symptoms
important to improve quality of death at home.