From Awareness to Prognosis: Ethical Implications of Uncovering Hidden Awareness in Behaviorally Nonresponsive Patients

2019 ◽  
Vol 28 (04) ◽  
pp. 616-631 ◽  
Author(s):  
MACKENZIE GRAHAM ◽  
EUGENE WALLACE ◽  
COLIN DOHERTY ◽  
ALISON MCCANN ◽  
LORINA NACI

Abstract:Long-term patient outcomes after severe brain injury are highly variable, and reliable prognostic indicators are urgently needed to guide treatment decisions. Functional neuroimaging is a highly sensitive method of uncovering covert cognition and awareness in patients with prolonged disorders of consciousness, and there has been increased interest in using it as a research tool in acutely brain injured patients. When covert awareness is detected in a research context, this may impact surrogate decisionmaking—including decisions about life-sustaining treatment—even though the prognostic value of covert consciousness is currently unknown. This paper provides guidance to clinicians and families in incorporating individual research results of unknown prognostic value into surrogate decisionmaking, focusing on three potential issues: (1) Surrogate decisionmakers may misinterpret results; (2) Results may create false hope about the prospects of recovery; (3) There may be disagreement about the meaningfulness or relevance of results, and appropriateness of continued care.

2018 ◽  
Vol 38 (05) ◽  
pp. 555-560 ◽  
Author(s):  
Mackenzie Graham ◽  
Colin Doherty ◽  
Lorina Naci

AbstractRobust prognostic indicators of neurological recovery are urgently needed for acutely comatose patients. Functional neuroimaging is a highly sensitive tool for uncovering covert cognition and awareness in behaviorally nonresponsive patients with prolonged disorders of consciousness, and may be applicable to acutely comatose patients. Establishing a link between early detection of covert awareness in acutely comatose patients and eventual recovery of function could have significant implications for patient prognosis, treatment, and end-of-life decisions. Because functional neuroimaging of acutely comatose patients is currently limited to the research context, ethical guidelines for disseminating a patient's individual research results to clinical teams and surrogate decision makers are needed. We propose an ethical framework composed of four conditions that can guide ethical disclosure of individual results of neuroimaging research in the acute care context.


2017 ◽  
Vol 40 (12) ◽  
pp. 1271-1278 ◽  
Author(s):  
Katherine Lee Chuy ◽  
Emad Uddin Hakemi ◽  
Tareq Alyousef ◽  
Geetanjali Dang ◽  
Rami Doukky

2005 ◽  
Vol 90 (11) ◽  
pp. 6085-6092 ◽  
Author(s):  
Gianluca Aimaretti ◽  
Maria Rosaria Ambrosio ◽  
Carolina Di Somma ◽  
Maurizio Gasperi ◽  
Salvatore Cannavò ◽  
...  

Abstract Context: Traumatic brain injury (TBI) and subarachnoid hemorrhage (SAH) are conditions at high risk for the development of hypopituitarism. Objective: The objective of the study was to clarify whether pituitary deficiencies and normal pituitary function recorded at 3 months would improve or worsen at 12 months after the brain injury. Design and Patients: Pituitary function was tested at 3 and 12 months in patients who had TBI (n = 70) or SAH (n = 32). Results: In TBI, the 3-month evaluation had shown hypopituitarism (H) in 32.8%. Panhypopituitarism (PH), multiple (MH), and isolated (IH) hypopituitarism had been demonstrated in 5.7, 5.7, and 21.4%, respectively. The retesting demonstrated some degree of H in 22.7%. PH, MH, and IH were present in 5.7, 4.2, and 12.8%, respectively. PH was always confirmed at 12 months, whereas MH and IH were confirmed in 25% only. In 5.5% of TBI with no deficit at 3 months, IH was recorded at retesting. In 13.3% of TBI with IH at 3 months, MH was demonstrated at 12-month retesting. In SAH, the 3-month evaluation had shown H in 46.8%. MH and IH had been demonstrated in 6.2 and 40.6%, respectively. The retesting demonstrated H in 37.5%. MH and IH were present in 6.2 and 31.3%, respectively. Although no MH was confirmed at 12 months, two patients with IH at 3 months showed MH at retesting; 30.7% of SAH with IH at 3 months displayed normal pituitary function at retesting. In SAH, normal pituitary function was always confirmed. In TBI and SAH, the most common deficit was always severe GH deficiency. Conclusion: There is high risk for H in TBI and SAH patients. Early diagnosis of PH is always confirmed in the long term. Pituitary function in brain-injured patients may improve over time but, although rarely, may also worsen. Thus, brain-injured patients must undergo neuroendocrine follow-up over time.


Author(s):  
Marcello Massimini ◽  
Giulio Tononi

Sizing up Consciousness explores, at an introductory level, the potential practical, clinical, and ethical implications of a general principle about the nature of consciousness. Using information integration theory (IIT) as a guiding principle, the book takes the reader along a scientific trajectory to face fundamental questions about the relationships between matter and experience. What is so special about a piece of flesh that can host a subject who sees light or experiences darkness? Why is the brain associated with a capacity for consciousness, but not the liver or the heart, as previous cultures believed? Why the thalamocortical system, but not other complicated neural structures? Why does consciousness fade during deep sleep, while cortical neurons remain active? Why does it recover, vivid, and intense, when the brain is disconnected from the external world during a dream? Can unresponsive patients with a functional island of cortex surrounded by widespread damage be conscious? Is a parrot that talks, or an octopus that learns and plays conscious? Can computers be conscious? Could a system behave like us and yet be devoid of consciousness—a zombie? The authors take on these basic questions by translating theoretical principles into anatomical observations, novel empirical measurements—such as an index of brain complexity that can be applied at the bedside of brain-injured patients—and thought experiments. The aim of the book is to describe, in an accessible way, a preliminary attempt to identify a general rule to size up the capacity for consciousness within the human skull and beyond.


2017 ◽  
Vol 30 (5) ◽  
pp. 273-278 ◽  
Author(s):  
Pierre Esnault ◽  
Ambroise Montcriol ◽  
Erwan D’Aranda ◽  
Julien Bordes ◽  
Philippe Goutorbe ◽  
...  

2016 ◽  
Vol 25 (4) ◽  
pp. 613-622 ◽  
Author(s):  
ADRIAN C. BYRAM ◽  
GRACE LEE ◽  
ADRIAN M. OWEN ◽  
URS RIBARY ◽  
A. JON STOESSL ◽  
...  

Abstract:Recent neuroimaging research on disorders of consciousness provides direct evidence of covert consciousness otherwise not detected clinically in a subset of severely brain-injured patients. These findings have motivated strategic development of binary communication paradigms, from which researchers interpret voluntary modulations in brain activity to glean information about patients’ residual cognitive functions and emotions. The discovery of such responsiveness raises ethical and legal issues concerning the exercise of autonomy and capacity for decisionmaking on matters such as healthcare, involvement in research, and end of life. These advances have generated demands for access to the technology against a complex background of continued scientific advancement, questions about just allocation of healthcare resources, and unresolved legal issues. Interviews with professionals whose work is relevant to patients with disorders of consciousness reveal priorities concerning further basic research, legal and policy issues, and clinical considerations.


Brain Injury ◽  
2001 ◽  
Vol 15 (7) ◽  
pp. 577-583 ◽  
Author(s):  
Ivan Kropyvnytskyy ◽  
Fraser Saunders ◽  
Peter Schierek ◽  
Margreet Pols

2018 ◽  
Vol 2017 (24) ◽  
pp. 129
Author(s):  
Jenny Kitzinger ◽  
Celia Kitzinger

In August 2017 a judge sanctioned withdrawal of clinically assisted nutrition and hydration from a patient who had been sustained in a vegetative state for twenty-three years, finding it “overwhelmingly in his best interests” for treatment to stop, allowing him to die. Injured in 1994, this patient had continued to receive life-sustaining treatment long after clinicians, and his family, had abandoned any hope for recovery and with no evidence that he would have wanted to be kept alive this way. Based on interviews with his parents, and the court hearing, we explore how it came about that he received this treatment for so long. We contextualize this in relation to our wider research about the treatment of severely brain injured patients and ask why, despite guidelines, policies and statute concerning best interests decision-making, thousands of patients in permanent vegetative states are similarly maintained in England and Wales without any formal review of whether continuing clinically assisted nutrition and hydration is in their best interests. We consider the implications for ethics, policy and practice in relation to patients with prolonged disorders of consciousness more broadly, highlighting in particular the actions that need to be taken by clinicians, inspection bodies, Clinical Commissioning Groups and Health Boards across England and Wales.


BMJ Open ◽  
2017 ◽  
Vol 7 (9) ◽  
pp. e018035 ◽  
Author(s):  
Antoine Roquilly ◽  
Sigismond Lasocki ◽  
Jean Denis Moyer ◽  
Olivier Huet ◽  
Pierre François Perrigault ◽  
...  

IntroductionTraumatic brain injury (TBI) is a major cause of death and severe prolonged disability. Intracranial hypertension (ICH) is a critical risk factor of bad outcomes after TBI. Continuous infusion of hyperosmolar therapy has been proposed for the prevention and the treatment of ICH. Whether an early administration of continuous hyperosmolar therapy improves long-term outcomes of patients with TBI is uncertain. The aim of the COBI study (number clinicaltrial.gov 03143751, pre-results stage) is to assess the efficiency and the safety of continuous hyperosmolar therapy in patients with TBI.Methods and analysisThe COBI (COntinuous hyperosmolar therapy in traumatic Brain-Injured patients) trial is a multicentre, randomised, controlled, open-label, two-arms study with blinded adjudication of primary outcome. Three hundred and seventy patients hospitalised in intensive care unit with a TBI (Glasgow Coma Scale ≤12 and abnormal brain CT scan) are randomised in the first 24 hours following trauma to standard care or continuous hyperosmolar therapy (20% NaCl) plus standard care. Continuous hyperosmolar therapy is maintained for at least 48 hours in the treatment group and continued for as long as is necessary to prevent ICH. The primary outcome is the score on the Extended Glasgow Outcome Scale at 6 months. The treatment effect is estimated with ordinal logistic regression adjusted for prespecified prognostic factors and expressed as a common OR.Ethics and disseminationThe COBI trial protocol has been approved by the ethics committee of Paris Ile de France VIII and will be carried out according to the principles of the Declaration of Helsinki and the Good Clinical Practice guidelines. The results of this study will be disseminated through presentation at scientific conferences and publication in peer-reviewed journals. The COBI trial is the first randomised controlled trial powered to investigate whether continuous hyperosmolar therapy in patients with TBI improve long-term recovery.Trial registration numberTrial registration number isNCT03143751.


2017 ◽  
Vol 69 (11) ◽  
pp. 1895
Author(s):  
Katherine T. Lee Chuy ◽  
Emad Hakemi ◽  
Tareq Alyousef ◽  
Geetanjali Dang ◽  
Rami Doukky ◽  
...  

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