Forum.
Discussion
A first point is that relatively few references are related to the continuous versus intermittent aspect of sedation in terminal illness. Most of them are « good practice opinions » and stress on the need to plan with the patient (or the family if the patient isn’t able to take place in the discussion) some kind of timetable of how long the sedation should be before a test of awakening and a new evaluation of its indication and of its usefulness are performed. Clinical studies are spare.A second point concerns the definition of the sedation (35, 36). Sometimes it concerns an artificial complete loss of consciousness. Most often, it concerns an artificial lowering of consciousness at a level low enough to provide a restful feeling but high enough to keep interactions abilities (6, 7, 19, 32, 37, 38, 39, 53). Krakauer (31) describes this titration as a fundamental difference with euthanasia to which sedation is sometimes compared (5, 37, 40, 44). Some authors even address the problem choosing not to discuss the time dimension, considering either explicitly (43, 46) or apparently implicitly (3) that sedation concerns extreme situations that no general discussion could completely meet and that the problem should be examined in each specific situation. Some authors separate the discussion with the patient or his family about sedation from the sedation itself, underlining that the proposal itself of sedation may be reassuring enough for the patient (in that he could be help until that point, in that no subject is impossible to discuss with the team) (11). Even more, it has been evoked that a partial sedation could be more a stressful situation for the patient than a complete sedation (55).
A third point is about the aims of sedation and the importance of their precise definition prior to any medical intervention in order avoid any ambiguity in the carers’ minds, inside the medical team, inside the family, or in the patient’s perception (29, 47, 48, 55).
Eventually, a partial or brief sedation may keep these goals unsaid, leaving to the patient the evaluation of the result according to his own criterions eventually unsaid too (sorry, do not understand!). However, a complete sedation doesn’t allow it and then requires the definition with the patient of criterions of following. If the patient is unable (delirium, …) to take part in this definition of goals and of following items, it is then even more important that the team define them clearly and explicitly.
Given these points, the general drawing lies on some basic grounds.
1. The importance or not of a preservation of consciousness.
A cultural difference appears to exist between latin and anglo-saxon groups (21, 22, 23, 41) : approaching death with an altered vigilance seems to be part of latin culture while the preservation of communication and of decision abilities seems to be part of anglo-saxon culture. That difference seems to concern patients as well as their families, even if the attitudes seem to become more like anglo-saxon approach in the younger generations.
Beside the cultural differences, individual feelings (15) or experience (51) of the professional carers seem to interfere too.
2. The ability to plan and to manage the time dimension.
The possibility to interrupt sedation if needed, wished, or planed is often mentioned (30). However, if it may be achieved under anaesthesia circumstances and in intensive care units (13, 28), the general state of the patient, the dying process, and the technical training of the carers may make that management more uncertain in palliative settings (9, 10, 48). So, the importance of being aware that death may happen while the patient is sedated is generally added.
3. The ethical issues
Consciousness being a fundamental part of being alive, its voluntary smoothing can’t easily be foreseen as a positive action. Therefore its theoretical acceptation requires a discussion generally based on the principle of double effect and on the principle of proportionality (45, 55). Nevertheless, it has been stressed that an analysis of the real relevancy of the double effect doctrine in palliative care situation is quite rare (49).
Alternatively, a specific situation could concern patient found terminal while being unconscious with no specific intent of the medical intervention and about whom the question arises to make him or not regain some level of consciousness. Batchelor (4) debates on the question to know if a consciousness recovering could give the patient a supplement of comfort, in a patient not asking specifically for it (because being unconscious).
Despite its possible links to a discussion about dignity (2, 52), it is interesting to note that in two clinical surveys sedation was not listed within symptoms altering the patient’s (12) or the professional carers (54) perception of dignity.
4. The procedural aspects
A particular care is most of the time recommended about the way sedation is organized (1, 9, 14, 26, 27, 29) :
- patient agreement,
- documentation concerning the discussion with the patient and his family,
- team discussion and consensus,
- clear and easy to assess goals of the sedation initiation and of its following,
- frequent reassessment of the indication and of the efficiency of the sedation,
- particular place of the most experimented professionals inside the team (pedagogical role, recall of the exceptional use of sedation) (25, 26, 34, 39).
5. The consequences of consciousness alteration
A one-time sedation needs a one-time therapeutic action and then may allow the need of the patient’s agreement, leaving him the choice not to ask for or not to accept sedation further after. On the contrary, a continuous sedation requires a continuous treatment, and if the patient’s agreement is also desired, a continuous (or repeated) agreement could seem necessary. But there is a contradiction between a patient being unconscious and the desire to get his agreement (42). If the indication is of a long time sedation, then the generally proposed option is to awake the patient from time to time in order to verify indication and agreement. Nevertheless, some authors mention both the risk to disrupt a fragile steady state with difficulty not to obtain it again (9, 24, 55) and that these awakenings should be planed instead of “just to see were we are” (10, 55).
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