The Experiences of Bereaved Relatives with Palliative Sedation and other End-of-life Care Practices

Abstract

During the past century, the circumstances in which people die have changed substantially. Acute deaths due to infectious diseases have been gradually replaced by more prolonged dying trajectories (1). One third of all deaths in The Netherlands occur suddenly and unexpectedly (2, 3). The increasing importance of chronic diseases as a cause of death and the attention currently being paid to patient-centred care at the end of life have created interest in the role of medicine in the timing and mode of death and dying (1). In many instances, death is not merely the result of the natural course of a lethal disease: medical decision-making often has an active role (2, 4-6). Such decision-making may concern the use of medical treatment to prolong the life of seriously ill patients (7). However, there is increasingly recognition that extension of life might not always be the most appropriate goal of medicine. Other goals have to guide medical decision-making at the end of life, such as improvement of quality of life of patients and their families by prevention and relief of suffering (8). Sometimes, patients who are nearing death have symptoms that cannot be relieved with conventional medical care, such as intractable pain, dyspnoea, and delirium (9, 10). This sometimes requires a treatment of last resort: ‘palliative sedation’. Palliative sedation is defined as the deliberate lowering of a patient’s level of consciousness in the last stages of life (11). The term palliative sedation may refer to several subtypes: temporary or intermittent sedation and continuous sedation until death. The degree of sedation necessary to relieve suffering may vary from superficial to deep (11). Continuous sedation is always administered in the final stages of life to patients who are dying and are experiencing unbearable suffering. Guidelines state that the aim of palliative sedation is to relieve suffering; lowering the level of consciousness is the means to that end. The aim should not be to lengthen or cut short the patient’s life (11). Guidelines further record that palliative sedation can only be used for patients whose death will ensue in the reasonably near future, that is, within one to two weeks (12-14). Studies have shown that palliative sedation is used in all settings where patients die and for patients with all kinds of diagnoses, but most often in hospitals and for patients with cancer (15, 16).