In case of untreatable suffering at the end of life, palliative sedation may be chosen to assure comfort by reducing the patient’s level of consciousness. An important question here is whether such sedated patients are completely free of pain. Because these patients cannot communicate anymore, caregivers have to rely on observation to assess the patient’s comfort. Recently however, more sophisticated techniques from the neurosciences have shown that sometimes consciousness and pain are undetectable with these traditional behavioral methods. The aim of this study is to better understand how unconscious palliative sedated patients experience the last days of their life and to find out if they are really free of pain. In this study we will observe 40 patients starting with initiation of palliative sedation until death. Assessment of comfort based on behavioral observations will be related with the results from a NeuroSense monitor, an EEG-based monitor used for evaluation of the adequacy of anesthesia and sedation in the operating room and an ECG-based Analgesia Nociception Index (ANI) monitor, which informs about comfort or discomfort condition, based on the parasympathetic tone. An innovative and challenging aspect of this study is its qualitative approach; “objective” and “subjective” data will be linked to achieve a holistic understanding of the study topic. The following data will be collected: assessment of pain/comfort by the patients themselves (if possible) by scoring a Visual Analogue Scale (VAS); brain function monitoring; monitoring of parasympathetic tone; caregivers’ assessment (pain, awareness, communication); relatives’ perception of the quality of the dying process; assessment by 2 trained investigators using observational scales; video and audio registration. Measuring pain and awareness in non-communicative dying patients is both technically and ethically challenging. ANI and EEG have shown to be promising technologies to detect pain that otherwise cannot be detected with the “traditional” methods. Although these technologies have the potential to provide objective quantifiable indicators for distress and awareness in non-communicative patients, strikingly they have not yet been used to check whether the current assessments for non-communicative patients are reliable. The study is registered on ClinicalTrials.gov (Identifier: NCT03273244 ; registration date: 7.9.2017).

Introduction In case of untreatable suffering at the end of life, continuous sedation until death (CSD) may be the only treatment option left. Because these patients cannot communicate anymore, caregivers have to rely on behavioral observation to assess the patient’s comfort. Recently, however, a number of studies from the neurosciences have shown that sometimes consciousness and pain are undetectable with these traditional behavioral methods. The aim of this study was to find out if subjective caregiver assessments of consciousness and pain would be confirmed by objective neurophysiological measures. Methods In this prospective observational study, we observed patients from the start of palliative sedation until death. Subjective caregiver assessments of level of consciousness and pain based on behavioral observations were compared with objective measures from neurophysiological monitoring devices. Results We collected and analyzed 108 subjective caregiver assessments in a sample of 12 patients and 32 assessments by traditionally used observational scales. We compared these with objective neurophysiological measures. Sensitivity and specificity of caregivers’ subjective assessments of consciousness was 23.6 and 91.1% respectively, with an accuracy of 54.0% and interrater reliability (κ) of 0.13. For pain, this was 0 and 94.79%, respectively, an accuracy of 88%, and an inter-rater reliability (κ) of − 0.063. Agreement between caregivers’ subjective assessments and objective neurophysiological measures of consciousness and pain was very poor. Conclusions Caregivers’ subjective assessment of level of consciousness and pain during CSD is unreliable compared with objective neurophysiological monitoring. Our results suggest that assessments of patient comfort during CSD could have been improved substantially by including objective monitoring of level of consciousness and pain. Trial Registration The protocol for this observational study has been registered retrospectively at Clinical-Trials.gov (ID NCT03273244).

Introduction: It is estimated that 70% to 80% of informal care for frail and disabled elders is provided by family caregivers (FCGs). Aim: To better understand how caregiving for the elderly has affected FCGs lives and to compare the perspective of these caregivers in Belgium and Kenya. Method: Semistructured interviews were undertaken with 15 FCGs in Kenya and 15 FCGs in Belgium. Interpretative phenomenological analysis was used to identify themes. Results: Themes discovered in the experience of family caregiving included profile of the care receiver, impact of caregiving on the FCG, cultural values and norms, challenges in caregiving, coping strategies and caregiver well-being. Discussion: FCGs in both Kenya and Belgium identified experiencing serious concerns. In Kenya, the lack of resources and formal structures play a more important role than in Belgium. Despite this difference, culture-specific views and norms are paramount to explaining the FCG experience in the two countries.

Background: Awareness and pain during palliative sedation is typically assessed by observational scales, but the use of such scales has been put into question. Case presentation: A woman in her mid-80s was admitted to a palliative care unit, presenting with chronic lymphatic leukemia, depression, and a cerebrovascular accident, with right-sided hemiplegia and aphasia. The patient was unable to eat and was suffering from nausea and vomiting. Before admission, the patient had expressed her desire to discontinue treatment on several occasions. Case management: The decision was made to initiate palliative sedation. The patient consented to take part in a study to assess level of comfort and pain using two monitoring devices (NeuroSense monitor and Analgesia Nociception Index monitor). Case outcome: The patient died 90 h after initiation of palliative sedation. Titration of the medication was challenging and sedation was not deep enough during the first 2 days. Thirteen assessments made with the Ramsay Sedation Scale showed that the patient was considered to be in a deep sleep, while in fact the NeuroSense monitor indicated otherwise. Conclusion: This case demonstrates the feasibility and potential advantages of using monitoring devices to objectify assessments of pain and discomfort in palliatively sedated patients.

Palliative care is increasingly confronted with cultural diversity. This can lead to various problems in practice. In this perspective article, the authors discuss in more detail which issues play a role in culture-sensitive palliative care, why naive culturalism will not solve such problems and in which direction research into this aspect of care can be further elaborated.