Palliative care looks at the patient as a whole with its physical, psychological, social and spiritual components, and therefore includes accompanying relatives during the illness and after death. Palliative care providers support life and consider death as a normal process. According to this conception of the end of life, multidisciplinary teams are committed to not precipitating death or postponing it by unreasonable investigations or treatments. The primary mission of this type of care is to preserve autonomy and quality of life until death, including the reduction of all symptoms that cause suffering and discomfort. Palliative care is about allowing the patient to express his or her wishes and choices about the course of care before he or she can no longer make them. The health care team gives full importance to what is essential for the patient, i.e. his or her quality of life. Palliative medicine faces ethical issues such as the decision to maintain deep and continuous sedation until death.
- Deep and continuous sedation maintained until death
The patient in palliative situation may request deep and continuous sedation maintained until death. This practice, legalized in 2006, is recommended for patients with incurable diseases presenting a suffering refractory to treatment. In sedative and analgesic form, this medication is administered to respond to the unbearable suffering of patients at the end of life. In addition, this practice often results in shortening the end of life. Deep and continuous sedation can be used in three situations: the patient presents an incurable organic impairment and suffering that is refractory to treatment; the patient wishes to stop treatment, which is life-threatening and inevitably causes pain; the patient is not able to express his or her will, but continued treatment is considered unreasonable (HAS, 2020). In the first two cases, sedation is a decision of the patient, and medicine only grants it if the conditions are met. The third situation can be considered if the subject has not opposed the practice in his or her advance directives. Before considering it, this practice must be thought through on a case-by-case basis because each situation is singular and complex. It therefore requires a collegial procedure. During this specific meeting, each caregiver is free to express himself or herself and state his or her point of view on the situation. All opinions are taken into account, but the final decision rests solely with the referring physician. Beyond medical conditions, certain psychological measures are to be considered. Even if at this stage of the disease it is not uncommon for the subject to present depressive and anxiety symptoms, it is necessary to assess their intensity. If the subject is suffering from depression, his request should be reconsidered after treatment. Indeed, the dark thoughts that depression can cause could be at the origin of the request for sedation, for example. It is therefore essential to explore his psychological state before taking any action. Some caregivers find it difficult to identify patients’ depressive states. Often considered normal when the days are marked by illness and suffering, depressive symptoms are nevertheless complex to nuance when the department has to make an informed decision such as sedation. Psychic and existential suffering are often intertwined with physical suffering. It is therefore essential to evaluate the quality of the various treatments that have been introduced. It is the team’s duty to analyze whether medical, psychological and social support has been put in place and whether it has been sufficient for the patient’s well-being. Moreover, the “long death” is unbearable for the dying patient. When the subject and his or her family make such a decision, the time taken by the health care team to reflect may be misunderstood. Indeed, the temporality of each person varies in these specific contexts. A collegial procedure is carried out on average three days after the patient’s request; these three days of waiting can be extremely long for a patient in pain. Nevertheless, the irreversibility of the decision represents an important responsibility for the medical profession. This time of reflection is fundamental to support consistency in care and avoid amalgamation (Dherbecourt, Giovagnoli, Louarn, & Wieckowski, 2019).
2. Confusion with euthanasia
The relief of suffering is the mainstay of palliative medicine. Deep and continuous sedation maintained until death is therefore part of the care. If the prerequisites for this practice are met, then deep sedation meets the obligations of medicine. However, it raises many questions for the team. The points of view can be very divergent, and for good reason, deep and continuous sedation is not understood in the same way by the members of the team. This practice can be seen as a killing practice. From the Latin “somniare”, care is defined by the action of taking care, of taking care of someone. For some caregivers, this definition loses its meaning when a practice is put in place that “encourages” the end of life. The notion of deep and continuous sedation generates a great deal of confusion among caregivers because, if not properly defined, it is akin to euthanasia. However, these two practices are quite different. While euthanasia responds to a request for death, deep and continuous sedation responds to the relief of refractory suffering. Indeed, euthanasia consists of injecting a lethal product into the subject which, by definition, provokes his or her death. Deep and continuous sedation is fundamentally different because it alters consciousness profoundly. Death thus occurs a delay that cannot be predicted in advance (HAS, 2020). These practices are regulated differently in France. Indeed, euthanasia is illegal because it is still considered today as homicide by poisoning. Even if the intentions of these practices diverge, confusion reigns in the medical profession. The questionings of the caregivers illustrate two realities: the psychic resonance and the erroneous understanding of the objectives of sedation. Some caregivers, who are very involved in their profession, have a tendency towards projection. This phenomenon is normal, particularly for those caregivers who are closest to the patient, such as nurses or orderlies. Support in the last moments of life often reinforces the nature of the bond. This phenomenon of projection is observed in particular by the difficulties of discernment when it comes to making a decision about a patient. The caregiver who projects his internal psychic states onto a patient loses all objectivity in such a debate, even if he feels he is doing good. Projection into the special environment of palliative medicine is not abnormal. However, it becomes problematic when it is not identified. In these moments, it is essential to question the caregiver about the problem he or she is encountering. Even today, therapeutic relentlessness is a frequent and painful reality; this notion is difficult to address because the personal and emotional implications are very strong (Rapin, 2001). In addition to projective phenomena, the notion of sedation is often misunderstood. It is essential to remember that the sedative approach alleviates suffering but does not respond to a request for death. It seems essential, in this context, to clarify the stakes of such an approach.
Words we have learned
Amalgamation : amalgame
Misunderstood : incompréhension
Solely : uniquement
Unbearable : insupportable
Alleviates : apaise
Deep and continuous sedation maintained until death : sédation profonde et continue jusqu’au décès