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the broad spectrum of unbearable suffering in end-of-life cancer studied in dutch primary care难以忍受的痛苦在临终的广谱癌症研究荷兰的初级保健
Ruijs et al. BMC Palliative Care 2012, 11:12
/1472-684X/11/12
RESEARCH ARTICLE Open Access
The broad spectrum of unbearable suffering in
end-of-life cancer studied in Dutch primary care
Cees DM Ruijs1,3*, Ad JFM Kerkhof2,3†, Gerrit van der Wal1,3† and Bregje D Onwuteaka-Philipsen1,3†
Abstract
Background: Unbearable suffering most frequently is reported in end-of-life cancer patients in primary care.
However, research seldom addresses unbearable suffering. The aim of this study was to comprehensively
investigate the various aspects of unbearable suffering in end-of-life cancer patients cared for in primary care.
Methods: Forty four general practitioners recruited end-of-life cancer patients with an estimated life expectancy of
half a year or shorter. The inclusion period was three years, follow-up lasted one additional year. Practices were
monitored bimonthly to identify new cases. Unbearable aspects in five domains and overall unbearable suffering
were quantitatively assessed (5-point scale) through patient interviews every two months with a comprehensive
instrument. Scores of 4 (serious) or 5 (hardly can be worse) were defined unbearable. The last interviews
before death were analyzed. Sources providing strength to bear suffering were identified through additional
open-ended questions.
Results: Seventy six out of 148 patients (51%) requested to participate consented; the attrition rate was 8%, while
8% were alive at the end of follow-up. Sixty four patients were followed up until death; in 60 patients interviews
were complete. Overall unbearable suffering occurred in 28%. A mean of 18 unbearable aspects was present in
patients with serious (score 4) overall unbearable suffering. Overall, half of the unbearable aspects involved the
domain of traditional medical symptoms. The most frequent unbearable aspects
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