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.

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.

Decompressive craniectomy for severe traumatic brain injury: is life worth living?

OBJECT: The object of this study was to assess the long-term outcome and quality of life of patients who have survived with severe disability following decompressive craniectomy for severe traumatic brain injury (TBI). METHODS: The authors assessed outcome beyond 3 years among a cohort of 39 patients who had been adjudged either severely disabled or in vegetative state 18 months after decompressive craniectomy for TBI. Assessments performed included the Extended Glasgow Outcome Scale, modified Barthel Index (mBI), Zarit Burden Interview, and 36-Item Short-Form Health Survey (SF-36). The issue of retrospective consent for surgery was also assessed. RESULTS: Of the 39 eligible patients, 7 died, 12 were lost to follow-up, and 20 patients or their next of kin consented to participate in the study. Among those 20 patients, 5 in a vegetative state at 18 months remained so beyond 3 years, and the other 15 patients remained severely disabled after a median follow-up of 5 years. The patients' average daily activity per the mBI (Pearson correlation coefficient [r] = -0.661, p = 0.01) and SF-36 physical score (r = -0.543, p = 0.037) were inversely correlated with the severity of TBI. However, the SF-36 mental scores of the patients were reasonably high (median 46, interquartile range 37-52). The majority of patients and their next of kin believed that they would have provided consent for surgical decompression even if they had known the eventual outcome. CONCLUSIONS: Substantial physical recovery beyond 18 months after decompressive craniectomy for severe TBI was not observed; however, many patients appeared to have recalibrated their expectations regarding what they believed to be an acceptable quality of life.

Psychological crisis intervention for the family members of patients in a vegetative state

OBJECTIVES: Family members of patients in a vegetative state have relatively high rates of anxiety and distress. It is important to recognize the problems faced by this population and apply psychological interventions to help them. This exploratory study describes the psychological stress experienced by family members of patients in a vegetative state. We discuss the effectiveness of a psychological crisis intervention directed at this population and offer suggestions for future clinical work. METHODS: A total of 107 family members of patients in a vegetative state were included in the study. The intervention included four steps: acquisition of facts about each family, sharing their first thoughts concerning the event, assessment of their emotional reactions and developing their coping abilities. The Symptom Check List-90 was used to evaluate the psychological distress of the participants at baseline and one month after the psychological intervention. Differences between the Symptom Check List-90 scores at the baseline and follow-up evaluations were analyzed. RESULTS: All participants in the study had significantly higher Symptom Check List-90 factor scores than the national norms at baseline. There were no significant differences between the intervention group and the control group at baseline. Most of the Symptom Check List-90 factor scores at the one-month follow-up evaluation were significantly lower than those at baseline for both groups; however, the intervention group improved significantly more than the control group on most subscales, including somatization, obsessive-compulsive behavior, depression, and anxiety. CONCLUSION: The results of this study indicate that the four-step intervention method effectively improves the mental health of the family members who received this treatment and lessens the psychological symptoms of somatization, obsessive-compulsive behavior, depression and anxiety.

The accuracy of surrogate decisions in intensive care scenarios.

Critically ill patients are often unable to make decisions about life-sustaining treatments and surrogate decision-makers are relied upon. However, it is unclear how accurately the surrogates' decisions reflect patients' intentions and expectations. We interviewed 36 pairs of patients and their appointed surrogate decision-makers about their decisions regarding nine treatments in each of three scenarios. The scenarios were persistent vegetative state, coma with likely neurological damage and chronic disease with dementia. The patients were interviewed 24 hours after they had undergone elective surgery under general anaesthesia. The surrogates were interviewed separately by the same interviewer. There was poor agreement between decisions made by the patients and their surrogates. The patients' and surrogates' summary scores (median (interquartile range) [range]) for treatments were 0 (0-4) [0-9] vs 8 (0-9) [0-9] for the vegetative state scenario, 3 (0-9) [0-9] vs 9 (0-9) [0-9] for the coma scenario and 3 (0-9) [0-9] vs 9 (4-9) [0-9] for the chronic disease scenario. The significantly higher surrogate scores suggest that the surrogates' decisions would have resulted in the patients having far more treatment than the patients would have wanted. In our participants, there was poor agreement between the decisions made by surrogates and patients. Further study is needed on measures such as facilitated discussions, advance directives and the difficulties that surrogates face, in order to improve the accuracy of surrogates' decisions and respect of patients' autonomy.

Persistent but reversible coma in encephalitis.

INTRODUCTION: Nontraumatic coma in adults has a poor prognosis, and late recovery of consciousness is unlikely. Functional recovery is usually extremely poor. However, a few nontraumatic comatose patients have shown late recovery of both awareness and function. METHODS: A retrospective survey was conducted by reviewing the medical records of all inpatients to our department during the 1990s. Patients with persistent but reversible nontraumatic coma were identified according to the following criteria: (a) deep coma with a Glasgow Coma Scale (GCS) score of 7 or less on admission; (b) nontraumatic cause; (c) persistence of unconsciousness for longer than 1 month; and (d) subsequent recovery of GCS (total) to normal. The clinical spectrum of patients meeting these criteria was evaluated. RESULTS: Six patients (ages 16-75 years) met the criteria. Viral encephalitis was diagnosed in five (two with herpes simplex virus, two with cytomegalovirus, and one with Epstein-Barr virus or cytomegalovirus). Two young female patients with encephalitis manifested extremely protracted coma persisting for 3 and 18 months, respectively. Complications included nonconvulsive status epilepticus in two patients and relative overdose of clonazepam in one patient. CONCLUSION: Recognition of the clinical spectrum of persistent but reversible nontraumatic coma is important.