The apparent gap between guidelines on palliative sedation and everyday practice. Commentary on: General practitioners’ report on continuous deep sedation until death for patients dying at home: A descriptive study from Belgium

Palliative sedation has been embraced by some as the final solution for the euthanasia problem: careful use of sedation would make euthanasia unnecessary. The study by Anquinet et al., published in this issue of the Journal, shows some of the complications and uncertainties that surround the practice of palliative sedation at home, where more than half of the cases of palliative sedation take place.

Medical decisions and actions at the end of life are a sensitive subject, which needs a sensitive research approach. It is especially difficult, in interviews, to avoid the trap of desirable answers. The best guarantee for obtaining answers that reflect the reality of the practice of GPs is to be as detailed as possible about real cases. This is the approach these researchers have taken, following the example of several earlier Belgian and Dutch studies into practices at the end of life (1,2). The fact that they found deviations from guidelines indicates that not only desirable answers have been given.

As the authors acknowledge, the number of studied cases was comparatively low: on an estimated total of 561 cases (3), they interviewed physicians about 28 cases of palliative sedation, using mainly structured questionnaires with a few open questions. With such low numbers, a more thorough qualitative approach could have given even more insight into the actual practice and the considerations of physicians.

Several findings from this study merit a closer look. First, in only a minority of cases physicians acted according to the five main demands of internationally published guidelines for palliative sedation. The problem, obviously, was that most physicians were not aware of these guidelines, because they were not translated and disseminated in Belgium. Therefore, what this paper shows is that there is a gap between these guidelines and everyday practice. Does this mean that practice has to change or does it lead to second thoughts about the guidelines? Both, probably.

We are not told exactly which parts of the guidelines were not followed, but two discrepancies stand out. At least some of the physicians did not discuss the decision to sedate with competent patients; whereas guidelines say they should. Furthermore, some of the GPs had at least a partial intention to shorten the patient's life; whereas guidelines say sedation should exclusively aim at alleviation of symptoms.

The ‘consent’ issue may seem worrisome, but I find it hard to believe that this is simply due to carelessness or paternalism of the physicians. In the context of palliative sedation, which should always concern severely suffering patients near death, it may be inappropriate and even harmful to demand from patients that they make an informed choice about whether or not they want sedation. Even if they are competent, their distress may be simply too severe to make such choices. At least some of the quotations from interviews that explain the absence of informed consent from competent patients seem quite straightforwardly saying this. This is not to say, of course, that informed consent is unimportant in palliative sedation, but it is to say that unbearable distress might be as good an explanation to forego consent seeking as incompetence is.

Then, there is the ‘intention’ issue. About half of the physicians said they had at least partially intended to shorten their patient's life. This is contrary to most guidelines, which are emphatic about the fact that palliative sedation should not be used to shorten a patient's life, i.e. it should not be used as an alternative form of euthanasia. However, the answers physicians gave here may partly be an artefact of the questionnaire. I have been involved in studies using these questionnaires, and I think that asking physicians about whether they partly or completely intended life shortening, leads to results that are hard to interpret. A physician who ticks the box ‘life-shortening partly intended’ may mean that he or she took it for granted, expected it, hoped for it, or indeed intended it alongside other intentions (‘I intended to shorten the patient's life, but also to relieve the pain or the breathlessness’). One of the disadvantages of structured questionnaires is that one does not know what a respondent means when she ticks a specific answer. I think there is a need for more so-called ‘think-aloud studies’ when using these questionnaires, meaning that, in a subsample of the interviewees the questionnaire is filled in while respondents give spontaneous comments about what they understand as the meaning of the question, and about what their answer means. Such studies have been very helpful in understanding why patients fill in quality of life questionnaires the way they do, but they would also help in questionnaires for physicians (4,5).

The authors are right in mentioning the need for more in-depth studies of the practice of palliative sedation. It would be especially interesting to look at the situation in Belgium five years from now, because it probably is the only country where, thanks to this study, a comparison will be possible between a pre- and a post-guideline situation.

Declaration of interest: The author reports no conflicts of interest. The author alone is responsible for the content and writing of the paper.