The fear that the end of life may be associated with intolerable or refractory suffering is something that is present in society. And, beyond fear, 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 that is not related to euthanasia.

This article summarizes two scientific papers that review how palliative sedation is practiced in Europe in prospective programs of study and what criteria are used to assess the quality of sedation.

This work has been the basis of a consensus document on the conceptual framework and the terminology of palliative sedation at the end of life, which is part of a project of the European Union, with the participation of groups from research in Germany, Belgium, Spain, Holland, Hungary, Italy and the United Kingdom.

What is palliative sedation?

Palliative sedation is a medical intervention aimed at relieving "refractory suffering" at the end of life. It achieves this by means of the proportional and controlled employment of drugs intended to reduce the patient's consciousness.

This palliative sedation can be continuous or intermittent, deep or light. In other words, palliative sedation does not always require the patient to be deep asleep: it can be sleepy and can also be applied for a specific period of time if this provides adequate relief if the patient is thereby relieved.

But in general, the sedation applied is deep, continuous and maintained to alleviate suffering until the patient dies. In fact, the clinical context of palliative sedation is always the end of life, and clinical guidelines suggest as a condition that a prognosis - and therefore a duration of sedation - of less than two weeks be considered.

The goal of palliative sedation is to relieve, so this sedation should always be proportional to the relief needed. This palliative sedation is different from the drowsiness produced by some drugs used to rest 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 internship aimed at fulfilling a wish not to be conscious at the end of life without refractory symptoms or severe distress. Nor is sedation used to alleviate the pain of family members or the burden of work or anxiety of caregivers.

What is "refractory distress"?

To consider palliative sedation, members of a care team must be convinced that there are no other treatment options that can provide adequate relief in a reasonable amount of time and without unacceptable adverse effects. Finding the acceptable time range is something shared between the team and the patient.

This team needs to be experienced in palliative care and to have performed a multidimensional assessment of the status. In fact, the patient often achieves adequate relief through the care and actions of this expert team.

The ability to achieve this relief is also influenced by tolerance to suffering, which depends on personal, social and cultural factors. This tolerance to pain or suffering also influences the patient's preferences and desire.

Palliative sedation is used when it is considered to be the only resource available way to alleviate the patient's status . In this context, refractory suffering is suffering that cannot be relieved with the work of an expert multidisciplinary palliative care team in sufficient time. The notion of refractoriness can be applied to a single symptom or, more commonly, to a set of symptoms that the patient experiences as unbearable.

Who decides on the condition of intolerability?

The decision to perform palliative sedation involves a joint decision-making process shared between the patient and an expert palliative care team. In a sense, it is the patient who determines that the problem is intolerable and the team that determines that it is refractory.

What symptoms are usually involved in what has been called refractory distress?

At the end of life there are symptoms or situations that can be potentially refractory such as delirium (agitated delirium), dyspnea, pain, continuous vomiting, convulsions... Some of them can present with true emergencies. This is the case of massive hemorrhage, terminal respiratory distress or pain crises that often require urgent palliative sedation.

How to evaluate the efficacy of palliative sedation?

The way to evaluate the efficacy of palliative sedation is the quality of comfort reported by the patient or, if this is not possible, the depth of sedation and the Degree perceived tranquility of the patient. There are questionnaires and objective scales that assess the Degree of discomfort even of a person who is unable to express him/herself, focusing on facial expression, calmness of breathing or level of relaxation. At summary, professionals focus on the relief and comfort level of the patient who is about to die.

"Existential suffering" as an exceptional status for palliative sedation

Palliative care also addresses the existential dimension of suffering. This existential suffering may present as loss of meaning and purpose in life, fear of death, helplessness, hopelessness and despair, perceived loss of dignity, feeling of withdrawal or simply feeling like a burden to others.

This in itself does not only occur in terminal illnesses, but can be expressed much more strongly when a person is facing the end of life. However, only in exceptional cases does existential suffering appear as the sole reason for palliative sedation. Cases in which this suffering is a (reinforcing) part of refractoriness are much more frequent.

The refractoriness of existential suffering is more difficult to establish because of its dynamic evolution, because of the absence of standardized means of measurement and because it can also occur in non-end stages of the disease in which palliative sedation is not considered an adequate treatment. But its main problem is that existential suffering goes beyond the medical and involves personal, cultural or religious aspects that add meaning to life.

In order to consider palliative sedation for existential suffering, several conditions should be met, such as: that it appears in the context of an advanced terminal illness, that it can be considered refractory after repeated evaluation by a multidisciplinary team, that in addition to clinical experience it includes a psychosocial and spiritual profile , and that family members and/or professional caregivers are involved in the decision.

Moreover, in case of existential suffering the first choice should be intermittent sedation rather than continuous deep sedation. And, in any case, palliative sedation for existential suffering should not be used to deliberately shorten life at the patient's request.

In conclusion

Palliative medicine is the science of alleviating the intense suffering caused by serious illnesses. If the suffering becomes unbearable for the terminally ill patient, the appropriate, ethical and medical approach is to provide relief with a proportionate means such as palliative sedation. Professionals must have knowledge in palliative care, including those corresponding to the internship of palliative sedation. The government and the legislator have an obligation to provide palliative care for all those who need it.

This article was originally published in The Conversation. Read the original.