The fear that the end of life may be associated with unbearable or insensitive suffering is something that is present in society. And, anxiety aside, the desire to die without suffering is something legitimate that fortunately has an effective medical response in what we know as palliative sedation, a sedation unrelated to euthanasia.
This article summarizes two scientific papers that discuss in prospective studies how palliative sedation is used in Europe and what criteria are used to assess the quality of sedation.
These works formed the basis of a consensus document on the conceptual framework and terminology of end-of-life palliative sedation, which is part of a project of the European Union, and in which research groups from Germany participate. Belgium, Spain, the Netherlands, Hungary, Italy and the United Kingdom.
What is Palliative Sedation?
Palliative sedation is a medical procedure aimed at relieving “refractory suffering” at the end of life. This is achieved through the proportional and controlled use of drugs designed to lower the consciousness of the patient.
This palliative sedation can be continuous or intermittent, deep or light. In other words, palliative sedation does not always require the patient to sleep deeply: it can be drowsy and it can also be applied for a period of time if it provides adequate relief when the patient is relieved in this way.
But in general, the sedation applied is deep, continuous and is maintained to relieve suffering until the patient dies. In fact, the clinical context of palliative sedation is always end of life, and the clinical guidelines suggest that a prognosis – and thus a sedation duration – of less than two weeks should be considered as a prerequisite.
The purpose of palliative sedation is to provide relief, so this sedation should always be proportional to the relief needed. This palliative sedation is different from the drowsiness caused by some medications used to calm the patient or to treat anxiety or as a side effect of analgesics such as morphine and its derivatives.
Palliative sedation is not a means of hastening the patient’s death, nor is it a practice aimed at fulfilling a desire to be ignorant at the end of life without refractory symptoms or severe distress. Nor is sedation used to relieve the pain of family members or the workload or anxiety of caregivers.
What is “refractory suffering”?
To consider palliative sedation, members of a health care team must be convinced that there are no other treatment options that can provide adequate relief within a reasonable time and without unacceptable side effects. Finding an acceptable time frame is something that is shared between the team and the patient.
This team must be experienced in palliative care and have performed a multi-dimensional assessment of the situation. In fact, the patient often achieves adequate relief thanks to the care and action of this expert team.
The ability to achieve this enlightenment is also influenced by tolerance for suffering, which depends on personal, social and cultural factors. This tolerance to pain or suffering also affects the patient’s preferences and desires.
Palliative sedation is used when it is believed to be the only resource available to alleviate the patient’s situation. In this context, refractory suffering is one that cannot be alleviated in sufficient time with the work of an expert multidisciplinary palliative care team. The concept of insensitivity can be applied to a single symptom or, more often, to a series of symptoms that the patient experiences as unbearable.
Who decides on the state of intolerance?
The decision to perform palliative sedation involves a collaborative decision-making process shared between the patient and an expert palliative care team. In a way, it is the patient who determines that the problem is unbearable and the team that it is insensitive.
What symptoms are usually involved in what is called refractory distress?
At the end of life, there are symptoms or situations that can be potentially refractory, such as delirium (agitated delirium), shortness of breath, pain, continuous vomiting, seizures … Some can arise with real emergencies. This is the case with massive bleeding, terminal breathlessness or pain attacks that usually require urgent palliative sedation.
How to evaluate the effectiveness of palliative sedation?
The effectiveness of palliative sedation can be evaluated based on the quality of the patient’s reported comfort or, if this is not possible, the depth of sedation and the degree of rest the patient is experiencing. There are questionnaires and objective scales that assess the degree of discomfort even of a person who cannot express himself, for this they focus on the expression of the face, the calmness of breathing or the level of relaxation. In short, professionals focus on the relief and comfort of the patient who is about to die.
“Existential suffering” as an exceptional situation for palliative sedation
Palliative care also addresses the existential dimension of suffering. This existential suffering can manifest itself as a loss of meaning and purpose in life, fear of death, helplessness, hopelessness and despair, perception of loss of dignity, sense of abandonment or simply a burden on others.
This in itself does not only happen with terminal illnesses, but can be much more pronounced when someone approaches the end of their life. However, only in exceptional cases does existential suffering emerge as the sole reason for palliative sedation. Cases in which this suffering is a (reinforcing) part of insensitivity are much more common.
The recalcitrance of existential suffering is more difficult to determine because of its dynamic evolution, the lack of standardized measurement methods and because it can also occur in non-terminal stages of the disease where palliative sedation is not considered an adequate treatment. But the main problem is that existential suffering goes beyond the medical and personal, cultural or religious aspects that give life meaning.
In order to consider palliative sedation in existential suffering, several conditions must be met, such as: that it appears in the context of a terminal advanced disease that it can be considered refractory after being evaluated repeatedly by a multidisciplinary team, which in addition to clinical experience, includes a psychosocial and spiritual profile, that family members and / or healthcare professionals participate in the decision.
In addition, in the case of existential suffering, the first option should be intermittent sedation instead of continuous deep sedation. And in any case, palliative sedation in existential suffering should not be used to deliberately shorten life at the request of the patient.
And last but not least
Palliative medicine is the science of alleviating the intense suffering caused by serious illness. If the suffering becomes unbearable for the terminal patient, it is appropriate, the ethical, the medical … to alleviate with a proportionate means such as palliative sedation. Professionals must have knowledge of palliative care, including those appropriate to the practice of palliative sedation. The ruler and the legislature have a duty to provide palliative care to anyone who needs it.