Ethically crucial questions
A key question is whether waking the patient should always be attempted (6). We are open to the possibility that it may be appropriate not to do this when it is obvious that the affliction will last until the end of life. Another issue is whether deep anxiety and distress should be regarded as indications in themselves. We believe that serious and treatment-refractory mental symptoms and delirium with extreme distress and confusion, for which attempts have been made to rectify any pathophysiological causes, could be an indication.
If patients who are expected to have more than a few hours or days left to live are placed in deep and continuous «sleep», there is an increasing risk that complications could foreshorten their lives. From a treatment perspective, such possible adverse effects pose problems. A third conundrum is therefore whether it can be justifiable to provide palliative sedation to patients with treatment-refractory afflictions, even when they are not immediately «dying». The working group gives an affirmative answer to this question, since the total suffering in such cases is greater.
The clinical and ethical imperative to relieve suffering weighs heavily. This is the background to our decision to change the title of the guidelines from «to the dying» to «at the end of life». If patients with longer remaining lifespans are provided with palliative sedation, monitoring is especially crucial. The doctor in charge of treatment must take all possible precautions to ensure that the patient does not die from complications resulting from the sedation. Competence, monitoring and communication with the patient (if possible) and next of kin are especially essential when palliative sedation is administered (6).
The guidelines also refer to fluid infusion. Here, we conclude that this will not normally be necessary if the patient has stopped drinking before sedation treatment is initiated. On the other hand, if the patient is ingesting fluids in any significant amount or is receiving parenteral fluids before palliative sedation is initiated, parenteral fluid infusion should continue. The amount of fluid should be adapted to the patient’s basic needs and continually assessed. This also applies to all forms of pharmacological treatment.
This is a form of treatment that should only be used in extreme cases and under specific conditions that are justifiable in medical, ethical and legal terms (8). The treatment can be abused by accelerating the death process through a deliberately disproportional increase in drug dosages. This is tantamount to «slow» euthanasia if the patient has requested such overdoses. If no such request has been made, this will be either an involuntary or non-voluntary medical homicide, depending on whether the patient is competent to provide consent or not (1, 10). Of course, it is essential to prevent these three deliberate, illegal forms of expediting death.
The patient’s needs should be the guiding principle, and professional competence, experience and sound medical judgement are thus of the highest importance. This has an impact on whether the treatment may also be provided in nursing homes or in the patient’s own home. Another item states that if it is deemed necessary to depart from the guidelines, this decision must be discussed at the managerial level and documented.
The hearing round showed widespread support for the guidelines, even though they evoked some critical remarks. Some feared that the change made to the title could risk a slippery slope leading to acceptance of euthanasia. We believe that this objection is groundless, for the following reasons: In contrast to palliative sedation, euthanasia is not a form of treatment (1, 10). Even though the sedation may involve a risk of premature death, this will never be the intention, provided that the guidelines are complied with. In the case of euthanasia, on the other hand, premature death – or more correctly: the quickest possible death – is the very intention (1, 10).