Changes in the use of continuous deep sedation in the Netherlands

Abstract

At the end of life, patients may suffer from severe symptoms. When these symptoms cannot be controlled by conventional treatment options, palliative sedation can relieve suffering. The most far reaching form of sedation is continuous deep sedation (CDS), which involves lowering the consciousness level of a dying patient deeply and continuously until the end of life. The acceptability of CDS has been highly debated in the past decades. In the Netherlands, end-of-life practices have been studied approximately every 5 years from 1990 onwards. These studies showed that the use of CDS has increased from 8.2% to 18.3% of all deceased people between 2005 and 2015. The latest report even shows a frequency of 23%. This increase raises questions about its background and about how this increase should be valued. The aim of this thesis is to provide insight in current practices of CDS, to explore how the use of CDS has changed in the Netherlands between 2005 and 2015, and to identify reasons for the increase of the use of CDS.

In this thesis; we show results from repetitive nationwide questionnaire studies on end-of-life decision practices among physicians in the Netherlands based on a stratified sample of deaths, we present a systematic literature review, we describe data from the Dutch Care Program for the Dying that provide insight into symptoms that patients experience at the end of life, we report a questionnaire study among physicians in eight different countries about their practices and experiences with CDS, and we describe qualitative interview studies among Dutch health care professionals and Dutch patients and relatives on the use of CDS.

It can be concluded, based on the findings of this thesis that different factors may have contributed to the increase of CDS in the Netherlands. Firstly, there has been an increased awareness of the option of starting CDS among health care professionals and among the public. Secondly, health care professionals experienced that, compared with several years before, patients, relatives, and sometimes even other health care professionals are increasingly inclined to raise the subject of CDS in cases of severe suffering. Thirdly, there has been a broadening of the indications to start CDS. Where, previously, indications for sedation were based on symptoms of a physical origin, increasingly, in recent years, symptoms of non-physical origin, such as fear and existential suffering, more often play a role in the decision to start CDS. Fourthly, the general opinion is that there is no need for a dying patient to suffer at the end of life, as symptoms can always be relieved, if necessary by the use of sedatives.

The increasing use of CDS demonstrates that what was originally seen as an exceptional option to relieve severe refractory suffering, has now become a more common practice in physicians end-of-life care for terminally ill patients.