When No One Notices: Disorders of Consciousness and the Chronic Vegetative State

Abstract

On January 5, 2019, the Associated Press reported that a woman thought to have been in the vegetative state for over a decade gave birth at a Hacienda HealthCare facility. Until she delivered, the staff at the Phoenix center had not noticed that their patient was pregnant. The patient was also misdiagnosed. Misdiagnosis of patients with disorders of consciousness in institutional settings is more the norm than the exception. Misdiagnosis is also connected to a broad and extremely significant change in the understanding of the vegetative state—a change that the field of bioethics has not yet fully taken into account. In September 2018, the American Academy of Neurology, the American College of Rehabilitation Medicine, and the National Institute on Disability, Independent Living, and Rehabilitation Research issued a comprehensive evidence‐based review on disorders of consciousness and an associated practice guideline on the care of these patients. These landmark publications update the 1994 Multi‐Society Task Force Report on the Vegetative State, which subcategorized the persistent vegetative state as either persistent (once the vegetative state lasted one month) or permanent (once the vegetative state lasted three months after anoxic injury or twelve months after traumatic injury). Noting that 20 percent of patients thought to be permanently unconscious might regain some level of consciousness, the new guideline has eliminated the permanent vegetative state as a diagnostic category, replacing it with the chronic vegetative state.

Case reports of patients with chronic disorders of consciousness in obstetric and gynecological practice

“…При проведении терапии, направленной на сохранение беременности, удавалось добиться адекватного гестационного возраста плода для родоразрешения [10][11][12]. известен скандальный случай в хосписе, в котором пациентка с Хнс подверглась насилию со стороны медицинского персонала, наступила беременность, закончившаяся срочными родами [13]. Однако фундаментальных работ, обобщающих данные о нейрогуморальных и эндокринных нарушениях у пациенток с Хнс, не проводили.…”

Bioethical Aspects of Patients in a Minimally Conscious State

“…Although recent studies show that 40 % of patients are erroneously diagnosed as vs patients in assisted residences, when in fact they are in a mcs, (2,3,4) the truth is that not a single neurologist saw Terry Wallis in 19 years. According to his father, the doctors said it was not necessary as nothing was going to change.…”

“…Dr. Joseph Fins' research, published in the most prestigious journals specialized in neurology and bioethics such as Neurology, (5)(6)(7)(8)11) the Hastings Center Report, (4,(12)(13) or the American Journal of Bioethics, (14)(15)(16) is the best expression of the need to carry out a critical and ethical analysis on the treatment that clinicians have been providing to mcs patients.…”

Brain Organoids and Consciousness: Late Night Musings Inspired by Lewis Thomas

“…26 , 27 Given this, it strikes me as beyond ironic that there is ethical concern about brain organoids and so little worry about individuals with severe brain injury who continue to suffer from pervasive neglect. 28 Such a preoccupation with scientific novelty discounts both richer notions of consciousness and regard for a marginalized community.…”