scholarly journals Informed Consent in Deep Brain Stimulation – Ethical Considerations in a Stress Field of Pride and Prejudice

Author(s):  
Tobias Skuban ◽  
Katja Hardenacke ◽  
Christiane Woopen ◽  
Jens Kuhn
Author(s):  
Ryan A. Grant ◽  
Casey H. Halpern ◽  
Gordon H. Baltuch ◽  
John P. O’Reardon ◽  
Arthur L. Caplan

2020 ◽  
Vol 23 (4) ◽  
pp. 582-585
Author(s):  
Lauren R. Sankary ◽  
Paul J. Ford ◽  
Andre G. Machado ◽  
Laura J. Hoeksema ◽  
Renato V. Samala ◽  
...  

2020 ◽  
Vol 29 (4) ◽  
pp. 557-573
Author(s):  
KATRINA A. MUÑOZ ◽  
JENNIFER BLUMENTHAL-BARBY ◽  
ERIC A. STORCH ◽  
LAURA TORGERSON ◽  
GABRIEL LÁZARO-MUÑOZ

AbstractDystonia is a movement disorder that can have a debilitating impact on motor functions and quality of life. There are 250,000 cases in the United States, most with childhood onset. Due to the limited effectiveness and side effects of available treatments, pediatric deep brain stimulation (pDBS) has emerged as an intervention for refractory dystonia. However, there is limited clinical and neuroethics research in this area of clinical practice. This paper examines whether it is ethically justified to offer pDBS to children with refractory dystonia. Given the favorable risk-benefit profile, it is concluded that offering pDBS is ethically justified for certain etiologies of dystonia, but it is less clear for others. In addition, various ethical and policy concerns are discussed, which need to be addressed to optimize the practice of offering pDBS for dystonia. Strategies are proposed to help address these concerns as pDBS continues to expand.


2020 ◽  
Vol 14 ◽  
Author(s):  
Katrina A. Muñoz ◽  
Kristin Kostick ◽  
Clarissa Sanchez ◽  
Lavina Kalwani ◽  
Laura Torgerson ◽  
...  

2021 ◽  
Vol 15 ◽  
Author(s):  
Cassandra J. Thomson ◽  
Rebecca A. Segrave ◽  
Paul B. Fitzgerald ◽  
Karyn E. Richardson ◽  
Eric Racine ◽  
...  

Background: How “success” is defined in clinical trials of deep brain stimulation (DBS) for refractory psychiatric conditions has come into question. Standard quantitative psychopathology measures are unable to capture all changes experienced by patients and may not reflect subjective beliefs about the benefit derived. The decision to undergo DBS for treatment-resistant depression (TRD) is often made in the context of high desperation and hopelessness that can challenge the informed consent process. Partners and family can observe important changes in DBS patients and play a key role in the recovery process. Their perspectives, however, have not been investigated in research to-date. The aim of this study was to qualitatively examine patient and caregivers’ understanding of DBS for TRD, their expectations of life with DBS, and how these compare with actual experiences and outcomes.Methods: A prospective qualitative design was adopted. Semi-structured interviews were conducted with participants (six patients, five caregivers) before DBS-implantation and 9-months after stimulation initiation. All patients were enrolled in a clinical trial of DBS of the bed nucleus of the stria terminalis. Interviews were thematically analyzed with data saturation achieved at both timepoints.Results: Two primary themes identified were: (1) anticipated vs. actual outcomes, and (2) trial decision-making and knowledge. The decision to undergo DBS was driven by the intolerability of life with severe depression coupled with the exhaustion of all available treatment options. Participants had greater awareness of surgical risks compared with stimulation-related risks. With DBS, patients described cognitive, emotional, behavioral and physical experiences associated with the stimulation, some of which were unexpected. Participants felt life with DBS was like “a roller coaster ride”—with positive, yet unsustained, mood states experienced. Many were surprised by the lengthy process of establishing optimum stimulation settings and felt the intervention was still a “work in progress.”Conclusion: These findings support existing recommendations for iterative informed consent procedures in clinical trials involving long-term implantation of neurotechnology. These rich and descriptive findings hold value for researchers, clinicians, and individuals and families considering DBS. Narrative accounts capture patient and family needs and should routinely be collected to guide patient-centered approaches to DBS interventions.


2010 ◽  
Vol 29 (2) ◽  
pp. E14 ◽  
Author(s):  
Anish N. Sen ◽  
Peter G. Campbell ◽  
Sanjay Yadla ◽  
Jack Jallo ◽  
Ashwini D. Sharan

Patients suffering from disorders of consciousness constitute a population that exists largely outside of the daily practice patterns of neurosurgeons. Historically, treatment has focused on nursing and custodial issues with limited neurosurgical intervention. Recently, however, deep brain stimulation has been explored to restore cognitive and physical function to patients in minimally conscious states. In this article, the authors characterize the physiological mechanisms for the use of deep brain stimulation in persistently vegetative and minimally conscious patients, review published cases and associated ethical concerns, and discuss future directions of this technology.


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