RESUMO
Patients with spinal cord injury (SCI) complain of changes in body representation, potentially leading to negative physical and psychological consequences. The purpose of our study is to evaluate the effects of robotic training with the Ekso-GT on body representation (BR) and on the quality of life in patients with SCI. The trial was designed as a pilot, assessor-blinded study. Forty-two inpatients with a diagnosis of SCI, classified as either American Spinal Cord Injury Association Impairment Scale (AIS), were enrolled in this study and randomized into either a control (CG: n = 21) or an experimental (EG: n = 21) group. Patients in the EG received rehabilitation training with the Ekso-GT device, whereas the CG patients were trained with conventional physical therapy (CPT), which consisted of physical and occupational therapy and psychological support. We considered as a primary outcome the modified Body Uneasiness Test (MBUT), focusing on three specific subscales on the patient's perception of BR, i.e., the Global Severity Index (MBUT-GSI), which is an indicator of body suffering; the Positive Symptom Distress Index (MBUT-PSDI) that expresses an individual's psychological distress; and the Lower Limb MBUT (MBUT-LL), which indicates the subject's perception of their thighs/legs. The Short-Form-12 Health Status Questionnaire (SF12) and the Beck's Depression Inventory (BDI) were used as secondary outcomes to evaluate the effect of the training on the quality of life and the psychological status. Non-parametric statistical analysis showed that the effect of the two treatments was significantly different on MBUT (BR), SF-12 (quality of life), and, partially, BDI (mood). Particularly, patients belonging to the EG achieved a major improvement in nearly all test scores compared to those in the CG. Our data suggest that the Ekso-GT training could be helpful in achieving positive changes in BR in patients with chronic SCI, especially in reducing psychological distress (PSDI) and thigh/leg perception (MBUT-LL) with an overall improvement in quality of life (SF-12).
RESUMO
Managing individuals with chronic disorders of consciousness raises ethical questions about the appropriateness of maintaining life-sustaining treatments and end-of-life decisions for those who are unable to make decisions for themselves. For many years, the positions fostering the "sanctity" of human life (i.e., life is inviolable in any case) have led to maintaining life-sustaining treatments (including artificial nutrition and hydration) in patients with disorders of consciousness, allowing them to live for as long as possible. Seldom have positions that foster "dignity" of human life (i.e., everyone has the right to a worthy death) allowed for the interruption of life-sustaining treatments in some patients with disorders of consciousness. Indeed, most ethical analyses conclude that the decision to interrupt life-sustaining therapies, including artificial nutrition and hydration, should be guided by reliable information about how the patient wants or wanted to be treated and/or whether the patient wants or wanted to live in such a condition. This would be in keeping with the principles of patient-centered medicine, and would conciliate the duty of respecting both the dignity and sanctity of life and the right to a worthy death. This "right to die" has been recognized in some countries, which have legalized euthanasia and/or physician-assisted suicide, but some groups fear that legalizing end-of-life decisions for some patients may result in the inappropriate use of euthanasia, both voluntary and nonvoluntary forms (slippery slope argument) in other patients. This review describes the current opinions and ethical issues concerning end-of-life decisions in patients with disorders of consciousness, with a focus on the impact misdiagnoses of disorders of consciousness may have on end-of-life decisions, the concept of "dignity" and "sanctity" of human life in view of end-of-life decisions, and the risk of the slippery slope argument when dealing with euthanasia and end-of-life decisions. We argue that the patient's diagnosis, prognosis, and wishes should be central to determining the most appropriate therapeutic approach and end-of-life decisions for that individual. Each patient's diagnosis, prognosis, and wishes should also be central to legislation that guarantees the right to die and prevents the slippery slope argument through the establishment of evidence-based criteria and protocol for managing these patients with disorders of consciousness.