Ethical, Palliative, and Policy Considerations in Disorders of Consciousness.

This essay complements the scientific and practice scope of the American Academy of Neurology Guideline on Disorders of Consciousness by providing a discussion of the ethical, palliative, and policy aspects of the management of this group of patients. We endorse the renaming of "permanent" vegetative state to "chronic" vegetative state given the increased frequency of reports of late improvements but suggest that further refinement of this class of patients is necessary to distinguish late recoveries from patients who were misdiagnosed or in cognitive-motor dissociation. Additional nosologic clarity and prognostic refinement is necessary to preclude overestimation of low probability events. We argue that the new descriptor "unaware wakefulness syndrome" is no clearer than "vegetative state" in expressing the mismatch between apparent behavioral unawareness when patients have covert consciousness or cognitive motor dissociation. We advocate routine universal pain precautions as an important element of neuropalliative care for these patients given the risk of covert consciousness. In medical decision-making, we endorse the use of advance directives and the importance of clear and understandable communication with surrogates. We show the value of incorporating a learning health care system so as to promote therapeutic innovation. We support the Guideline's high standard for rehabilitation for these patients but note that those systems of care are neither widely available nor affordable. Finally, we applaud the Guideline authors for this outstanding exemplar of engaged scholarship in the service of a frequently neglected group of brain-injured patients.

Analysis of Italian regulations on pathways of care for patients in a vegetative or minimally conscious state.

Different rehabilitation models for persons diagnosed with disorders of consciousness have been proposed in Europe during the last decade. In Italy, the Ministry of Health has defined a national healthcare model, although, to date, there is a lack of information on how this has been implemented at regional level. The INCARICO project collected information on different regional regulations, analysing ethical aspects and mapping care facilities (numbers of beds and medical units) in eleven regional territories. The researchers found a total of 106 laws; differences emerged both between regions and versus the national model, showing that patients with the same diagnosis may follow different pathways of care. An ongoing cultural shift from a treatment-oriented medical approach towards a care-oriented integrated biopsychosocial approach was found in all the welfare and healthcare systems analysed. Future studies are needed to explore the relationship between healthcare systems and the quality of services provided.

Behavioural improvement in a minimally conscious state after caloric vestibular stimulation: evidence from two single case studies.

OBJECTIVE: To investigate whether caloric vestibular stimulation, a non-invasive form of neuro-modulation, alters the level of awareness in people residing in a minimally conscious state. DESIGN: Single-case ( n = 2), prospective, controlled (ABAB) efficacy study. SETTING: Tertiary, neuro-rehabilitation inpatient ward within a university hospital. PARTICIPANTS: Two individuals in a minimally conscious state. INTERVENTION: Left ear caloric vestibular stimulation was performed in two four/five-week blocks interleaved with two four/five-week blocks of sham stimulation. Session duration and frequency gradually increased within each block from once per day for 10 minutes (Week 1) to once per day for 20 minutes (Week 2) to 20 minutes twice per day in the remaining weeks. MEASURES: Wessex Head Injury Matrix, JFK Coma Recovery Scale - Revised. RESULTS: Both participants' Wessex Head Injury Matrix scores indicated a transition from involuntary (i.e. mechanical vocalization) to voluntary (i.e. gesture making, selective responses to family members) behaviour that was time-locked to the onset of active stimulation. In one participant, this improvement persisted for at least four weeks after active stimulation, while in the other it diminished two weeks after stimulation. Allied, although less dramatic, changes were seen on the arousal and auditory subscales of the JFK Coma Recovery Scale - Revised. CONCLUSION: The data provide the first evidence that vestibular stimulation may help improve outcome in a low awareness state, although further studies are needed to replicate effect and determine longer-term benefit.

Neuroethics and Disorders of Consciousness: Discerning Brain States in Clinical Practice and Research.

Decisions about end-of-life care and participation in clinical research for patients with disorders of consciousness begin with diagnostic discernment. Accurately distinguishing between brain states clarifies clinicians' ethical obligations and responsibilities. Central to this effort is the obligation to provide neuropalliative care for patients in the minimally conscious state who can perceive pain and to restore functional communication through neuroprosthetics, drugs, and rehabilitation to patients with intact but underactivated neural networks. Efforts to bring scientific advances to patients with disorders of consciousness are reviewed, including the investigational use of deep brain stimulation in patients in the minimally conscious state. These efforts help to affirm the civil rights of a population long on the margins.

Symptomatic treatment of unresponsive wakefulness syndrome with transcranially focused extracorporeal shock waves.

OBJECTIVE: Can stimulation of nerve growth factors by focused transcranial extracorporeal shock wave therapy (TESWT) be made effective for persons within unresponsive wakefulness syndrome (apallic syndrome)? DESIGN: Between eight and 18 years after the brain lesion, five patients with unresponsive wakefulness syndrome of differing severity received TESWT with the device Duolith (Storz Medical) during four-week physicomedical complex therapies. In the previous years they had been treated with the same complex therapies without TESWT. The vigilance did not change. RESULTS: After two-four years and an average of 5.2 treatment series, the patients' abilities improved by 135.9% on the German Coma Remission Scale (KRS) and by 43.6% on the Glasgow Coma Scale. In the motor area of the KRS, the patients improved by 64.3%. Three PEG feeding tubes could be removed, nonverbal communication initiated four times. CONCLUSION: In this longitudinal observation study, focused TESWT stimulated vigilance in patients with unresponsive wakefulness syndrome. The precise neurophysiological effects remain to be verified by a study of the clinical results.

Resgate biográfico como estratégia de assistência a pacientes com condições neurológicas muito graves / Biographic Rescue as a strategy to assist patients with severe neurological conditions

Este artigo é um relato de experiência, apresentando uma prática de Terapia Ocupacional junto a pacientes comcondições neurológicas muito graves, pautada no resgate biográfico destes sujeitos, utilizando-se do diário de campo da primeira autora. Tem como referencial norteador o Cuidado,entendido como a designação da atenção à saúde interessada no sentido existencial da experiência do adoecimento. Busca-se o resgate da subjetividade destas pessoas, compreendida como o modo de organizar as diferentes experiências, a partir e com relação à atribuição de significado par a o seu cotidiano. A população assistida nesta experiência refere-se àquelas que sofreram umaperda muito grande de sua funcionalidade (motora e cognitiva), apartir de acometimentos neurológicos, especialmente pessoas em estado vegetativo persistente e em estado mínimo de consciência. Memória, história, identidade, dignidade, subjetividade especificam a prática do terapeuta ocupacional, independentemente das reações neurológicas apresentadas, como alguém que ajuda reconstruir os sentidos e significados do cotidiano do paciente em condição de tão severa incapacidade.

This article aims to describe an occupational therapy intervention for patients with severe neurological conditions, based on biographical rescue. It was used records and fi eld diaries of the first author. The concept of Comprehensive Care is the mainreference, designed as care interested in the existential sense of the illness process. It seeks to rescue the subjectivity of these people, understood as a way of organizing all the different experiences in life, from their relations with meaning. The assisted populationrefers to those who have suffered great loss of its functionality (motor and cognitive), from neurological affections, especially persons in a persistent vegetative state and minimally conscious state. Memory, history, identity, dignity, subjectivity specify thepractice of occupational therapist, regardless of neurological reactions presented by the patients, as someone who helps reconstruct the meanings of the daily life of person with so severedisability.

Rehabilitation outcome of anoxic-ischaemic encephalopathy survivors with prolonged disorders of consciousness.

OBJECTIVES: To examine the natural clinical course of patients admitted to inpatient neurorehabilitation in a coma, vegetative state (VS), or minimally conscious state (MCS) after anoxic-ischaemic encephalopathy (AIE). METHODS: This is a retrospective cohort study of 113 consecutive patients admitted to a German inpatient neurorehabilitation centre with severe disorders of consciousness (DOC) following AIE due to cardiac arrest over a 6-year period. Functional independence was measured with the Glasgow Outcome Scale (GOS) and recovery of consciousness with the Coma Remission Scale (CRS). Separate binary logistic regression models were used to identify independent predictors for functional and behavioural outcomes. RESULTS: Seven patients (6.2%) achieved a good functional outcome (GOS 4-5). Five of these showed significant functional improvement within the first 8 weeks. 22 patients (19.5%) recovered consciousness; the last patient began to make significant improvement between weeks 10 and 12. Logistic regression showed that both increasing age and lower admission CRS predicted unfavourable functional outcome and persistent DOC. A longer stay in the ICU also predicted persistent DOC at the end of neurorehabilitation. However, neither malignant somatosensory evoked potential (SEP) test results nor hypothermia treatment on the ICU were outcome predictors in either outcome category. CONCLUSION: Even among severely affected AIE patients arriving at a neurological rehabilitation centre in a DOC, there remains potential for functional and behavioural improvement. However, significant improvements may not begin for up to 3 months post-injury. This study suggests that recovery of consciousness and even a good neurological outcome are possible despite malignant SEP test results.

Post-coma persons emerged from a minimally conscious state and showing multiple disabilities learn to manage a radio-listening activity.

This study assessed microswitch-based technology to enable three post-coma adults, who had emerged from a minimally conscious state but presented motor and communication disabilities, to operate a radio device. The material involved a modified radio device, a microprocessor-based electronic control unit, a personal microswitch, and an amplified MP3 player. The study was carried out according to a non-concurrent multiple baseline design across participants. During the intervention, all three participants learned to operate the radio device, changing stations and tuning on some of them longer amounts of time than on others (i.e., suggesting preferences among the topics covered by those stations). They also ended a number of sessions before the maximum length of time allowed for them had elapsed. The practical (rehabilitation) implications of the findings were discussed.

Post-coma persons with extensive multiple disabilities use microswitch technology to access selected stimulus events or operate a radio device.

The present two studies extended research evidence on the use of microswitch technology by post-coma persons with multiple disabilities. Specifically, Study I examined whether three adults with a diagnosis of minimally conscious state and multiple disabilities could use microswitches as tools to access brief, selected stimulus events. Study II assessed whether an adult, who had emerged from a minimally conscious state but was affected by multiple disabilities, could manage the use of a radio device via a microswitch-aided program. Results showed that the participants of Study I had a significant increase of microswitch responding during the intervention phases. The participant of Study II learned to change radio stations and seemed to spend different amounts of session time on the different stations available (suggesting preferences among the programs characterizing them). The importance of microswitch technology for assisting post-coma persons with multiple disabilities to positively engage with their environment was discussed.

Care protocol for persistent vegetative states (PVS) and minimally conscious state (MSC) in Lorraine: retrospective study over an 18-year period.

OBJECTIVES: Retrospective analysis of the efficiency of a protocol for care of chronic vegetative states (CVS) and minimally conscious state (MCS) in Lorraine. MATERIAL AND METHOD: Two indicators are used: protocol activity (number of patients hospitalized between 1988 and 2006, number of admissions per year, of requests per year, origin of requests, waiting time) and the epidemiological data (age, sex ratio, etiology, length of stay, geographic origin, number of deaths, number of hospital discharges). The number of CVS and MCS and patients having progressed towards arousal is specified as well as the technical procedures (orthopedic surgery, number of tracheotomies). RESULTS: Forty-seven patients (30 males and 17 females) were hospitalized in a 12-bed unit. The number of admissions per year was 2.4, and the annual number of requests varied between five and 15. Hospitalization times ranged from six to 18 months. The average length of hospitalization was 41 months. Eighty-eight percent of the cases were residents of Lorraine. The etiology was traumatic (53%), vascular (38% including 12% anoxia), miscellaneous (9%). Fifteen percent rate of return to arousal (average time period: 28.41 months, traumatic etiology) with hospital discharge in four cases. CONCLUSION: The protocol is managed as part of a local scheme and enables an appropriate response to a specific clinical profile by providing up-to-date multidiscipline follow-up care and a rapid solution should intercurrent events occur (signs of arousal, orthopedic deterioration, change of environment). Typical limitations are geographical remoteness and difficulties with family support care.