Autonomia em demência avançada e estados vegetativos permanentes na iminência de morte / Autonomía en demencia avanzada y estados vegetativos permanentes al borde de la muerte / Autonomy in advanced dementia and permanent vegetative states in imminent death

RESUMO. A autonomia privada existencial, como expressão da dignidade da pessoa humana, representa para o indivíduo a possibilidade de agir em conformidade com valores e significados eleitos essenciais na elaboração do seu projeto de vida. Neste estudo, seus autores, dois terapeutas ocupacionais, dois advogados e uma psicóloga, somam saberes e dialogam com intuito de demarcar a relevância da autonomia privada existencial nas condições de demência avançada, nos estados vegetativos permanentes e na iminência de morte. Na tarefa a que se propõem, os autores ponderam sobre suas experimentações e interlocuções enquanto profissionais de formação acadêmica diversificada, inclinados a ofertar espaços para comunicar vida e acolher dores. São apresentadas e discutidas as bases jurídicas da autonomia privada, assim como os pressupostos da Logoterapia de Viktor Frankl em defesa da liberdade de vontade e da dignidade no final da vida.

RESUMEN La autonomía existencial privada, como expresión de la dignidad de la persona humana, representa para el individuo la posibilidad de actuar de acuerdo con valores y significados elegidos esenciales en la elaboración de su proyecto de vida. En este estudio, sus autores, dos terapeutas ocupacionales, dos abogados y un psicólogo suman conocimiento y diálogo con el fin de demarcar la relevancia de la autonomía privada existencial en condiciones de demencia avanzada, en estados vegetativos permanentes y muerte inminente. En la tarea que proponen, los autores reflexionan sobre sus vivencias e interlocuciones como profesionales con una formación académica diversificada, inclinados a ofrecer espacios para comunicar la vida y acoger el dolor. Se presentan y discuten las bases legales de la autonomía privada, así como los supuestos de la Logoterapia de Viktor Frankl en defensa de la libertad de voluntad y dignidad al final de la vida.

ABSTRACT. Existential private autonomy, as an expression of the dignity of the human person, represents for the individual the possibility of acting in accordance with essential values and meanings for elaboration of their life project. The authors of this study, two occupational therapists, two lawyers and a psychologist gather their knowledge and dialogue to demarcate the relevance of existential private autonomy in conditions of advanced dementia, in permanent vegetative states and imminent death. In the task proposed, the authors pondered over their experiences and dialogues as professionals with a diversified academic background, inclined to provide spaces to communicate life and welcome pain. The legal bases of private autonomy are presented and discussed, as well as the assumptions of Viktor Frankl's Logotherapy in defense of freedom of will and dignity at the end of life.

The Suffering Child: Claims of Suffering in Seminal Cases and What To Do About Them.

In all of medicine, there is perhaps nothing so distressing as bearing witness to a patient's suffering, especially if that patient is a child. We want to do everything that we can to avoid or alleviate a child's suffering, yet what do clinicians, ethicists, lawyers, or family members mean when they use the term "suffering," and how should these claims of suffering factor into pediatric decision-making? This question of suffering and what to do about it has played a key role in several prominent pediatric cases over the past decade, including the cases of Charlie Gard, Alfie Evans, and Baby Joseph. These cases have become seminal cases precisely because there is no clear resolution, and the "suffering child" continues to challenge our moral ideals of what it means to live a good life. In this article, I explore the various ways in which the concept of suffering is used in these cases, and I offer new ways in which parents, providers, and all those who work with sick children can approach the suffering child.

Covert Consciousness and Covert Ethics.

Rights Come to Mind: Brain Injury, Ethics, and the Struggle for Consciousness (2015) by Joseph J. Fins offers rich narratives of families and patients who experience disorders of consciousness in flawed health-care systems that are not clinically, structurally, financially, or ethically prepared to respond to the inherent complexities of these conditions. In 2018, only a few years after the publication of this book, the medical guidelines for these disorders officially changed with key publications in Neurology. Fins has called on bioethicists to respond to these significant developments, and this paper serves as a response to that call. This article offers a critical analysis of a couple of Fins's arguments. But it also emphasizes the importance of these developments and Fins's work for thinking through bedside and organizational ethics issues that arise in advocating for patients with disorders of consciousness.

Neurological disorders, affective bioethics, and the nervous system: reconsidering the Schiavo case from a materialist perspective.

This article proposes a novel approach to bioethics, referred to as "affective bioethics", which draws on traditions in anthropology, science and technology studies, disability studies, and Spinozist materialism. By focusing on the case of Michael and Terri Schiavo, in which Terri's personhood and subjectivity are challenged by dominant forms of neurological reductivism in the USA, this article suggests that approaching her condition as a set of relations with the people in her life and her socio-technical environment may have helped to develop new ways to conceptualise personhood and subjectivity moving beyond the view of her as a non-person. Drawing on Michael Schiavo's memoir of his legal battles, and Terri's diagnosis and care, this article shows how Terri's connections to the world disrupt American ideas about the isolatable individual as the basis for personhood and subjectivity. Attending to these interpersonal and socio-technical connections focuses bioethical attention on the worlds that individuals inhabit, and how those worlds might be designed to make more kinds of life livable and new forms of personhood and subjectivity possible.

Can Salient Stimuli Enhance Responses in Disorders of Consciousness? A Systematic Review.

PURPOSE OF REVIEW: Diagnostic classification of patients with disorders of consciousness (DoC) is based on clinician's observation of volitional behaviours. However, patients' caregivers often report higher levels of responsiveness with respect to those observed during the clinical assessment. Thus, increasing efforts have been aimed at comprehending the effects of self-referential and emotional stimuli on patients' responsiveness. Here we systematically reviewed the original experimental studies that compared behavioural and electrophysiological responses with salient vs. neutral material in patients in vegetative state/unresponsive wakefulness syndrome or in minimally conscious state. RECENT FINDINGS: Most of the reviewed studies showed that salient stimuli (i.e. patient's own or familiar faces, patient's own name, and familiar voices) seem to elicit a higher amount of behavioural or electrophysiological responses with respect to neutral pictures or sounds. Importantly, a quite high percentage of patients seem to respond to salient stimuli only. The present review could foster use of personally salient stimuli in assessing DoC. However, the low overall quality of evidence and some limitations in the general reviewing process might induce caution in transferring these suggestions into clinical practice.

Uncovering Consciousness in Unresponsive ICU Patients: Technical, Medical and Ethical Considerations.

This article is one of ten reviews selected from the Annual Update in Intensive Care and Emergency Medicine 2019. Other selected articles can be found online at https://www.biomedcentral.com/collections/annualupdate2019 . Further information about the Annual Update in Intensive Care and Emergency Medicine is available from http://www.springer.com/series/8901 .

Event-related potentials in the odd-ball paradigm and behavioral scales for the assessment of children and adolescents with disorders of consciousness: A proof of concept study.

OBJECTIVE: Quantification of signatures of conscious processing in children with disorders of consciousness (DoC) using odd-ball paradigms in multiple modalities. METHOD: We review the diagnostic approaches available in the field, from clinical scales to neuroimaging methods, and concentrate upon measures derived from electroencephalographic event related potentials. RESULTS: Evoked potentials were recorded in five procedures, encompassing visual, auditory and tactile modalities, from ten pediatric DoC patients-six in a minimally conscious state (MCS), three in unresponsive wakefulness syndrome (UWS) and one who emerged from MCS (eMCS)-and the control group of 10 healthy children. In almost all the eMCS and MCS patients, higher amplitude of P300 was observed and the effect was statistically significant in at least one out of the five performed procedures. Additionally, signs of conscious information processing were detected in one UWS patient. CONCLUSION: The presented results provide a proof of concept for the possibility of applying ERP-derived electrophysiological measures as an aid in the assessment of children and adolescents in DoC.

Looking toward predicting functional recovery in disorders of consciousness: can sensorimotor integration help us?

PRIMARY OBJECTIVE: Only a few objective prognostic markers are available for patients with disorders of consciousness (DoC). We assessed whether the magnitude of short-latency afferent inhibition (SAI) might be a useful predictor of responsiveness recovery and functional outcome in patients with DoC. RESEARCH DESIGN: We enrolled 40 patients with prolonged Minimally Conscious State (MCS) and Unresponsive Wakefulness Syndrome (UWS) in a longitudinal, observational study. METHODS AND PROCEDURES: Clinical features (including Coma Recovery Scale-Revised, CRS-R, and Glasgow Outcome Scale, GOS) and SAI were collected at the study entry and after 18 months from study inclusion, to assess a correlation between SAI and the clinical outcome. MAIN OUTCOMES AND RESULTS: At the follow-up, 19 patients remained in their baseline condition, whereas 7 UWS evolved into MCS or emerged-from-MCS (EMCS), eight MCS evolved into EMCS, and two MCS- evolved into MCS+. Two UWS and one MCS+ died for cardiopulmonary complications. The patients who showed the highest GOS, the highest CRS-R and the lowest SAI strength at study entry, improved at the follow-up. CONCLUSIONS: Our findings suggest that an objective and simple neurophysiologic measure as SAI strength could provide useful information to predict the outcome and the behavioral responsiveness of patients with DoC.

Partially dead, partially separated: establishing the mechanism between ambiguous loss and grief reaction among caregivers of patients with prolonged disorders of consciousness.

OBJECTIVES:: To trace the psychological mechanism underlying caregivers' emotional experience in prolonged disorders of consciousness, by examining the mediating role of boundary ambiguity in the relationship between ambiguous loss and grief. DESIGN:: Cross-sectional design. SETTING:: The Respiratory Rehabilitation Division of a long-term medical and rehabilitation institute. SUBJECTS:: A total of 64 primary caregivers (69% female) of patients in a vegetative state ( n = 49) or minimally conscious state ( n = 15), with a mean age of 55.5 (SD = 12.3) years. Participants were mostly the patient's children (62%) or partners (27%). The mean caregiving duration was 4.9 (SD = 5.1) years. MAIN MEASURES:: The Boundary Ambiguity Scale, the Revised Need for Closure Scale, an adapted version of the multifactor Two-Track Bereavement Questionnaire, and a sociodemographic questionnaire, which included items regarding caregiving: frequency of visits and perception of the patient's psychological presence. RESULTS:: (1) Caregivers' grief scores (total TTBQ: mean = 2.97; SD = 0.55) did not significantly differ from those exhibited by a normative bereavement sample. (2) Time since injury did not affect caregivers' grief scores (three-year cut-point; P > .05). (3) Mediation analyses revealed that boundary ambiguity (mean = 34.03; SD = 7.55) significantly mediates the relationship between need for closure ( B = .11; confidence interval (CI) = .04-.23) and grief; frequency of visits ( B = .05, CI = .02-.10) and grief and perception of psychological presence ( B = .26, CI = .00-.61) and grief in three separate models. CONCLUSION:: Ambiguity concerning relational boundaries hinders caregivers' ongoing grief reaction and impedes their ability to integrate the loss. High frequency of visits, belief in the patient's psychological presence and difficulties in tolerating uncertainty are all clinical manifestations of caregivers' entangled experience.

Unresponsive Wakefulness Syndrome in Children after Near-Drowning: Long-Term Outcome and Impact on the Families.

Among 131 children admitted to our institution for early phase rehabilitation after freshwater near-drowning (ND) between the year 1986 and 2000, 87 were in unresponsive wakefulness syndrome (UWS) for at least 4 weeks after the accidents. An anonymous questionnaire was sent to the families after 0.5 to 15.0 years (median: 4.6) and 48 mothers and 51 fathers of 55 of these 87 children were interviewed after 6.6 to 23.8 years (median: 13.8) of ND. At the time of the interviews, 8/55 children were able to perform daily living activities independently, 36/55 children were not able to do so (many of them suffered from chronic medical conditions like spasticity or disorders of swallowing), and 11/55 children had died. Health-related quality of life (HRQoL) was, however, similar to the normal population for mothers, and even higher for fathers. Furthermore, the ND accident had apparently not lead to a higher rate of separations of parents but had increased their likelihood to have further children. Feelings of guilt were highly prevalent (23/47 mothers, 20/47 fathers), and correlated with lower HRQoL of the respective parent. We found correlations between duty of supervision and feelings of guilt and between outcome and HRQoL for only the fathers. In conclusion, we found that after 4 weeks in UWS, the long-term neurological outcome of pediatric ND victims is often but not always poor. Despite often severe disabilities or death of the child during long-term care, parents surprisingly report little impact on their HRQoL, on the stability of their partnership or on their wish to have further children. Our findings may help parents and physicians to choose the best treatment for a child in UWS due to different etiologies striking the balance between rehabilitation and palliative care.

"It gets better. It can´t be worse than what we have been through." Family accounts of the minimally conscious state.

OBJECTIVES: The aim of this qualitative study was to explore family life when a family member is in a chronic minimally conscious state (MCS). Experiences with the health care system were also explored. METHODS: As part of a larger qualitative study of family life after a family member suffers severe physical injury, we conducted a focus group interview with five family members of three patients in a chronic MCS. The participants included three mothers, one father, and one sibling. The length of time since the brain injuries was four, four, and ten years. A thematic analysis was conducted. RESULTS: Three main themes emerged. Each family reflected on the challenges of maintaining family unity. They also revealed how they had dealt with the ambiguity and severity of the situation, including the communication with the health care system. Finally, they described their journeys back toward a normal, everyday family life. CONCLUSIONS: The findings demonstrate challenges faced by family members but also their capacity to withstand and overcome adversity. Clinicians are reminded to maintain a long-term perspective and understand the importance of helping families adjust, maintain hope for a better future, and mitigate their psychological pain.

The effectiveness of non-invasive brain stimulation on arousal and alertness in patients in coma or persistent vegetative state after traumatic brain injury: Protocol of systematic review and network meta-analysis.

BACKGROUND: Traumatic brain injury is a leading cause of death and disability worldwide. The survivors usually suffer from disorders of consciousness, especially coma state and persistent vegetative state. For these patients, there is no standard treatment for them, but non-invasive brain stimulations are considered as relatively more acceptable treatments. However, the knowledge regarding the relative effectiveness and the rank of the effectiveness of the non-invasive brain stimulations is limited. Thus, in this study, we aim to conduct a systematic review and network meta-analysis to evaluate the effect of non-invasive train stimulations on arousal and alertness in patients in a coma or persistent vegetative state after traumatic brain injury. METHODS AND ANALYSIS: A comprehensive search strategy will be performed in the relevant databases (MEDLINE, EMBASE, Cochrane Central Register of Controlled Trials, World Health Organization (WHO) International Clinical Trials Registry Platform (ICTRP), Chinese Biomedical Literature Database, China National Knowledge Infrastructure, Wan Fang Data). The random or quasi-random controlled trails focusing on the effectiveness of the non-invasive brain stimulations will be included. The risk of bias for the included studies will be appraised using the Cochrane collaboration tool for assessing risk of bias. The standard pairwise meta-analysis and a Bayesian network meta-analysis will be conducted. ETHICS AND DISSEMINATION: This research is a systematic review and network meta-analysis. Thus, there is no requirement of ethical approval and patient informed consent. PROSPERO REGISTRATION NUMBER: CRD42018104945.

Provision of renal care for patients with end stage kidney disease in persistent vegetative state, in United Arab Emirates: a national survey of renal physicians.

Patients with end stage kidney disease (ESKD) with severely impaired cognitive function have no survival benefit from dialysis. We therefore undertook a survey to explore the renal physicians' practices of withholding and withdrawal of dialysis treatment in vegetative state patients in the United Arab Emirates (UAE). A cross sectional survey of 29 nephrology practices in UAE exploring physicians' practices in making decisions of withholding and withdrawal of dialysis treatment during provision end-of-life care for patients in persistent vegetative state (PVS).The majority of participants practice in governmental non-for-profit dialysis units (79%), and think they are well prepared to make decision with patients and family on issues of dialysis withdrawal and withholding (69%). If a chronic dialysis patient became permanently unconscious only few respondents (17%) indicated probability of stopping dialysis. On the other hand, more respondents (48%) reported that dialysis is likely to be withheld in PVS patients who develop kidney failure. In high risk or poor prognosis ESKD patients and given how likely they would consider each option independently, respondents reported they are likely to consider time-limited dialysis in 78% of the time followed by stopping (46%) or forgoing (27%) dialysis. Majority of the participants perceived that their decisions in providing renal care for PVS patients in UAE were influenced by the family sociocultural beliefs (76% of participants), the current hospital policies (72% of participants), and by Islamic beliefs (66% of participants). Only few perceived access to palliative care (30%) and treatment cost (17%) to have an impact on their decision making.Decisions of initiation and continuation of dialysis treatment to ESKD patients in PVS are prevalent among nephrology practices in UAE. Development of local guidelines based on the societal values along with early integration of palliative kidney failure management care would be required to improve the quality of provision of end-of-life renal care in UAE. ABBREVIATIONS: ESKD: stage kidney disease; UAE: United Arab Emirates; PVS: persistent vegetative state; RPA: Renal Physicians Association; ASN: American Society of Nephrology; EMAN: Emirates Medical Association Nephrology Society; CPR: cardiopulmonary resuscitation.

Assessment of Nociception and Pain in Participants in an Unresponsive or Minimally Conscious State After Acquired Brain Injury: The Relation Between the Coma Recovery Scale-Revised and the Nociception Coma Scale-Revised.

OBJECTIVES: To investigate the relation between consciousness and nociceptive responsiveness (ie, Nociception Coma Scale-Revised [NCS-R]), to examine the suitability of the NCS-R for assessing nociception in participants with disorders of consciousness (DOC), and to replicate previous findings on psychometric properties of the scale. DESIGN: Specialized DOC program. SETTING: Specialized DOC program and university hospitals. PARTICIPANTS: Participants (N=85) diagnosed with DOC. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: We prospectively assessed consciousness with the Coma Recovery Scale-Revised (CRS-R). Responses during baseline, non-noxious, and noxious stimulations were scored with the NCS-R and CRS-R oromotor and motor subscales. RESULTS: CRS-R total scores correlated with NCS-R total scores and subscores. CRS-R motor subscores correlated with NCS-R total scores and motor subscores, and CRS-R oromotor subscores correlated with NCS-R total scores as well as verbal and facial expression subscores. There was a difference between unresponsive wakefulness syndrome and minimally conscious state in the proportion of grimacing and/or crying participants during noxious conditions. We replicated previous findings on psychometric properties of the scale but found a different score as the best threshold for nociception. CONCLUSIONS: We report a strong relation between the responsiveness to nociception and the level of consciousness. The NCS-R seems to be a valuable tool for assessing nociception in an efficient manner, but additional studies are needed to allow recommendations for clinical assessment of subjective pain experience.

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

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.

Late-recovery from "permanent" vegetative state in the context of severe traumatic brain injury: A case report exploring objective and subjective aspects of recovery and rehabilitation.

This article provides a detailed outline of the recovery of a young male patient during his emergence from a vegetative state (VS) 19 months after suffering a severe traumatic brain injury. Several similar cases have been documented, but these tend not to consider the subjective experience of the patient or family; our aim was therefore to provide a detailed account that emphasises our neuropsychological exploration of the impact of the injury on this person, and looks at the experience of his mother along the timeline from his accident to the end of a successful period in rehabilitation. Clinical details are presented including standardised and non-standard assessments, neuropsychological interventions, as well as reflections from the patient himself. Moreover, qualitative data from an interview with his mother is used to illustrate the emotional impact on family of such a vacillating diagnostic status and prognosis for the future. We conclude that late-emergence from VS is increasingly documented and further cases must be published to better understand this phenomenon. The present case illustrates the emotional impact this situation can have on a patient and his or her family, and gives an important insight into a patient's view of his or her life and identity following such an event.

Late recovery of awareness in prolonged disorders of consciousness -a cross-sectional cohort study.

PURPOSE: To detect any improvement of awareness in prolonged disorders of consciousness in the long term. METHODS: A total of 34 patients with prolonged disorders of consciousness (27 vegetative state and seven minimally conscious state; 16 males; aged 21-73) were included in the study. All patients were initially diagnosed with vegetative/minimally conscious state on admission to our specialist neurological rehabilitation unit. Re-assessment was performed 2-16 years later using Coma Recovery Scale-Revised. RESULTS: Although remaining severely disabled, 32% of the patients showed late improvement of awareness evidenced with development of non-reflexive responses such as reproducible command following and localization behaviors. Most of the late recoveries occurred in patients with subarachnoid hemorrhage (5/11, 45.5%). The ages of patients within the late recovery group (Mean = 45, SD = 11.4) and non-recovery group (Mean = 43, SD = 15.5) were not statistically different (p = 0.76). CONCLUSIONS: This study shows that late improvements in awareness are not exceptional in non-traumatic prolonged disorders of consciousness cases. It highlights the importance of long-term follow up of patients with prolonged disorders of consciousness, regardless of the etiology, age, and time passed since the brain injury. Long-term follow up will help clinicians to identify patients who may benefit from further assessment and rehabilitation. Although only one patient achieved recovery of function, recovery of awareness may have important ethical implications especially where withdrawal of artificial nutrition and hydration is considered. Implications for rehabilitation Long-term regular follow-up of people with prolonged disorders of consciousness is important. Albeit with poor functional outcomes late recovery of awareness is possible in both traumatic and non-traumatic prolonged disorders of consciousness cases. Recovery of awareness has significant clinical and ethical implications especially where withdrawal of artificial nutrition and hydration is considered.