Palliative sedation : why we should be more concerned about the risks that patients experience an uncomfortable death

Once death is imminent, a major concern of the family members and caregivers is to assure maximal comfort during this terminal phase. This can often be achieved by “conventional” pharmacological drugs such as opiates or other symptom-controlling drugs. However, in case of refractory symptoms leading to unbearable suffering such as intolerable pain, dyspnea, and delirium, a more drastic option may be chosen, known as palliative sedation (Table 1). In these cases, comfort is sought by reducing the patient's level of consciousness [12,23]. Although palliative sedation is ethically controversial and some studies have questioned its efficacy and safety [29], this practice has substantially increased. The incidence of palliative sedation is not easily measured, partly because there are several definitions and alternative terms in use, such as “terminal sedation” and “continuous sedation until death,” to describe this practice [32]. However, the available studies indicate that the practice of palliative sedation is increasing in hospitals, nursing homes, and the home care setting. The overall reported incidences vary now between 7% and 17% of all deaths [2,5]. It is assumed that patients who are sedated according to the current standards of care and the guidelines of palliative sedation are unaware of their clinical situation and therefore do not experience symptoms of discomfort such as dyspnea, delirium, and other distressing conditions that are common during the terminal phase. However, a critical evaluation based on more recent evidence raises the question of whether the current assessments of suffering and awareness are accurate enough. Our concerns are based on 3 kinds of problems. Firstly, the assessment of comfort in dying patients is challenging; secondly, patients are sometimes mistakenly considered to be unaware; and thirdly, the titration of drugs is difficult.