The living dead? Perception of persons in the unresponsive wakefulness syndrome in Germany compared to the USA

Steppacher I, Kißler J. The living dead? Perception of persons in the unresponsive wakefulness syndrome in Germany compared to the USA. BMC Psychology. 2018;6(5): 5.Background The extent to which people ascribe mind to others has been shown to predict the extent to which human rights are conferred. Therefore, in the context of disorders of consciousness (DOC), mind ascription can influence end of life decisions. A previous US-American study indicated that participants ascribed even less mind to patients with unresponsive-wakefulness-syndrome (UWS) than to the dead. Results were explained in terms of implicit dualism and religious beliefs, as highly religious people ascribed least mind to UWS. Here, we addresses mind ascription to UWS patients in Germany. Methods We investigate the perception of UWS patients in a large German sample (N = 910) and compare the results to the previous US data, addressing possible cultural differences. We further assess effects of medical expertise, age, gender, socio-economic status and subjective knowledge about UWS in the German sample. Results Unlike the US sample, German participants did not perceive UWS patients as “more dead than dead”, ascribing either equal (on 3 of 5 items) or more (on 2 items) mental abilities to UWS patients than to the dead. Likewise, an effect of implicit dualism was not replicated and German medically trained participants ascribed more capabilities to UWS patients than did a non-medical sample. Within the German sample, age, gender, religiosity and socio-economic status explained about 15% of the variability of mind ascription. Age and religiosity were individually significant predictors, younger and more religious people ascribing more mind. Gender had no effect. Conclusion Results are consistent with cross-cultural differences in the perception of UWS between Germany and the USA, Germans ascribing more mind to UWS patients. The German sample ascribed as much or more but not less mind to a UWS patient than to a deceased, although within group variance was large, calling for further research. Mind ascription is vital, because, in times of declining resources for healthcare systems, and an increasing legalization of euthanasia, public opinion will influence UWS patients’ rights and whether ‘the right to die’ will be the only right conceded to them

Diagnostic and ethical challenges in disorders of consciousness and locked-in syndrome: a survey of German neurologists.

Diagnosis and decisions on life-sustaining treatment (LST) in disorders of consciousness, such as the vegetative state (VS) and the minimally conscious state (MCS), are challenging for neurologists. The locked-in syndrome (LiS) is sometimes confounded with these disorders by less experienced physicians. We aimed to investigate (1) the application of diagnostic knowledge, (2) attitudes concerning limitations of LST, and (3) further challenging aspects in the care of patients. A vignette-based online survey with a randomized presentation of a VS, MCS, or LiS case scenario was conducted among members of the German Society for Neurology. A sample of 503 neurologists participated (response rate 16.4%). An accurate diagnosis was given by 86% of the participants. The LiS case was diagnosed more accurately (94%) than the VS case (79%) and the MCS case (87%, p < 0.001). Limiting LST for the patient was considered by 92, 91, and 84% of the participants who accurately diagnosed the VS, LiS, and MCS case (p = 0.09). Overall, most participants agreed with limiting cardiopulmonary resuscitation; a minority considered limiting artificial nutrition and hydration. Neurologists regarded the estimation of the prognosis and determination of the patients' wishes as most challenging. The majority of German neurologists accurately applied the diagnostic categories VS, MCS, and LiS to case vignettes. Their attitudes were mostly in favor of limiting life-sustaining treatment and slightly differed for MCS as compared to VS and LiS. Attitudes toward LST strongly differed according to circumstances (e.g., patient's will opposed treatment) and treatment measures

Evaluating Nonverbal Behavior of Individuals with Dementia During Feeding: A Survey of the Nursing Staff in Residential Care Homes for Elderly Adults

OBJECTIVES: To determine how nursing staff evaluate nonverbal behavior related to hand and tube feeding of residents with dementia. DESIGN: Cross-sectional survey. SETTING: A stratified sample of nurses and nursing assistants in residential nursing homes in a major German city. PARTICIPANTS: Nursing staff members (N = 131) in 12 nursing homes. MEASUREMENTS: Nursing staff perception of nonverbal behavior of residents with dementia in response to hand and tube feeding. RESULTS: Ninety-three percent of survey participants considered the nonverbal behavior of residents with advanced dementia crucial for decisions about artificial nutrition and hydration (ANH). The same percentage had at some point encountered residents who did not open their mouths when feeding was attempted. Fifty-three percent of the participants interpreted residents' expressions of pleasure while eating as a will to live. The most frequent interpretation of residents' aversive behavior was discomfort. When residents did not open their mouth during nurse's hand feeding, 41% of the participants inferred a will to die. CONCLUSION: Most nurses and nursing assistants consider residents' behavior during hand or tube feeding to be important, but their interpretations are heterogeneous. Various professional caregivers assume a will to live or die. Further reflection is necessary to determine how behavioral expressions should be factored into treatment decisions

Imaging correlations in non-communicating patients

The diagnosis and medical management of patients with acute or chronic disorders of consciousness (DOC) are challenging. Motor-independent functional neuroimaging technologies are increasingly employed to study covert cognitive processes in the absence of behavioural reports. Studies with functional magnetic resonance imaging (fMRI) and positron emission tomography (PET) performed in this patient population have utilized active, passive and resting-state paradigms. Active paradigms refer to mental imagery tasks that measure wilful modulation of brain signal in specific brain areas, aiming to detect command-following. Passive paradigms are used to measure brain responses to external sensory stimulation (e.g. auditory, somatosensory and visual). Alternatively, in resting-state paradigms, spontaneous brain function is assessed while subjects receive no external stimulation and are instructed to let their mind wander. Independently from each other, these methods have shown differences between healthy controls and patients, as well as among patients with DOC. However, these techniques cannot yet be used in clinical settings before robust information at the single-subject level will be provided: it is expected that multimodal research will improve the single-patient diagnosis, shed light on the prognostic biomarkers, and eventually promote the medical management of patients with consciousness alterations

Detecting Levels of Consciousness

peer reviewedPatients with disordered consciousness due to brain injury pose medical and ethical challenges. Rates of clinical misdiagnosis of “vegetative”/unresponsive, minimally conscious and locked-in syndrome states remain challengingly high. Clinical misdiagnosis raises profound ethical concerns in terms of medical management, treatment of pain, and end-of-life decisions. Therefore, valid diagnosis is of utmost importance in clinical settings. A number of neuroimaging and electrophysiology studies now suggest that some behaviorally “vegetative state” patients may nevertheless show atypical cortical activation during resting state conditions; in some cases, they are able to follow commands or even communicate through willfully modified brain activity. Advances in investigating disorders of consciousness with neuroimaging techniques promise to lead to a more accurate understanding of individual patients’ cognitive abilities and to shed light on the gray zones of these clinical conditions. The formulation of an ethical framework which will strike a balance between the protection of these patients and further research on disorders of consciousness is an ethical, clinical, and scientific demand