Volumen del ciclón evaluado sobre la longitud natural

In 1991 the first of several Dutch studies was published relating to the frequency of medical end of life decisions (van der Maas et al., 1991). This was commissioned by the Dutch government with the aim of addressing the issues being raised in the public debate on legalising euthanasia. The intent was to inform the debate about the

frequency and type of decisions being made by Dutch physicians. Medical end of life decisions were considered in the following categories: (i) euthanasia and related decisions (e.g. physician assisted suicide (PAS)); (ii) non-treatment decisions (where a decision to withhold or withdraw potentially life prolonging treatment was made); (iii) decisions to use opioids and other drugs in increasing doses to alleviate pain and symptoms, with the ‘probable’ effect of shortening life (van der Maas et al., 1991). This was the first study to provide national data about medical decisions which were made at the end of life. These studies have laid a framework in which sedation is examined within this context. This has been important not only in examining the terminology and demonstrating how it is interpreted in different countries, but also in widening the debate about the ethical nature of sedation in palliative care. These studies have provided important insights into the perceived intentions of physicians in using sedation and are important in highlighting international differences.

In 2004 as part of an evaluation of the notification procedure for physician assisted deaths, Rietjens et al investigated the use of ‘terminal sedation’ (Rietjens et al., 2004b). The aim of this study was to determine the frequency of terminal sedation among Dutch

43 physicians. They carried out interviews with 410 physicians in the Netherlands; these physicians were stratified according to their clinical role in order to be representative of the national group of physicians. Those who had practised terminal sedation were asked to recall the last patient they had treated. Terminal sedation was defined as:

the administration of drugs to keep the patient in deep sedation or coma until death, without giving artificial nutrition or hydration (ibid).

The definition of terminal sedation can be seen to incorporate the withholding or withdrawal of artificial nutrition or hydration (ANH) and this was found to be a significant aspect of this study. The authors found that 52% of physicians had used terminal sedation and, if the deaths were nationally representative, they determined that 10% of deaths in the Netherlands were preceded by this form of terminal sedation. Of the physicians who had used terminal sedation, 47% had partly intended to hasten death and 17% explicitly intended to hasten death through terminal sedation. Of the 17% explicitly intending to hasten death, 14% intended this through the withholding of ANH, with 2% intending to hasten death through the direct effect of the sedative drug. It was estimated that life was shortened by more than a month in 6% of patients

described by the physicians, however in 73% it was estimated that this would have been by less than a week (ibid).

Miccinesi and colleagues of the EURELD consortium conducted a study in 2001, the full details of which were reported in 2003 (van der Heide et al., 2003), with additional data relating to sedation reported in 2006 (Miccinesi et al., 2006). This study involved questionnaires being sent to physicians in six European countries. For this paper

‘continuous deep sedation’ (CDS) was the term chosen to describe the continuous use of deep sedation, and the term ‘terminal sedation’ was described as a ‘special kind of sedation’, in situations in which CDS was used without ANH. This was viewed to be different precisely because of the intended or foreseen life shortening effect of the withholding or withdrawing of ANH.

In this 2006 paper by Miccinesi et al, it was found that Italy and Belgium had the highest prevalence of CDS, with 8.5% and 8.2% of all deaths being preceded by CDS (ibid). Sweden and Denmark had the lowest rate of CDS prior to death with 2.5% and 3.2% respectively being preceded by CDS. In 35% to 65% of instances of CDS being

44 used, ANH was not given. As the authors note, however, the absolute numbers of those given ANH mean little without knowing the intent behind the decision to withhold this treatment (ibid). Some recommend the use of ANH at the end of life, believing it to improve symptoms and wellbeing (Craig, 2004). Others, however, warn against this as some evidence has suggested that problems such as ascites may develop (Morita, 1999, Morita et al., 2006). The use and withholding or withdrawing of ANH is discussed in more depth in the next section of this chapter. Miccinesi et al concluded that if life expectancy were anticipated to be longer than a week, the use of CDS without ANH may be a marker of intent to hasten death (Miccinesi et al., 2006). In the initial Dutch studies the withholding or withdrawal of ANH was seen to be integral to the practice of sedation. This perspective developed as the definitions in the medical literature changed and were clarified, and the implicit withholding or withdrawal of ANH came to be seen as being involved in one small area of sedation – the use of CDS without ANH. This was the evolved definition of ‘terminal sedation’ (ibid).