Disorders of Consciousness and Neuro-Palliative Care

Author(s):  
Joseph J. Fins ◽  
Maria Masters

This chapter explains how neuro-palliative care can be provided to patients with severe brain injury. Before arguing that the right to die must be preserved and that the right to care for patients who are minimally conscious must be supported, it defines and reviews brain states that constitute disorders of consciousness along with their differential biology. It then gives an overview of palliative care for patients with severe brain injury and the challenges involved in diagnosing the minimally conscious state. It proceeds by discussing advances in technology, particularly neuroimaging, that may help meet the needs of such patients. It also considers the neuroethics of diagnosis and concludes by suggesting ways to integrate the needs of individuals suffering from disorders of consciousness in both the local and national palliative care infrastructure.

Author(s):  
Joseph J. Fins ◽  
Barbara Pohl

Neuro-palliative care is an important resource for patients and families confronting severe brain injury. Although many clinicians equate brain injury with certain death or futility, survivors have substantial needs that might be met by palliative care expertise. This chapter suggests that the boundaries of palliative medicine include those with severe brain injury, most notably those in the minimally conscious state, and that with this nosological expansion practitioners of palliative care reflect carefully on often nihilistic attitudes directed towards patients with disorders of consciousness. This chapter establishes how to better meet the needs of these patients and their surrogates, reviewing definitional criteria for the vegetative and minimally conscious states, highlighting advances in diagnostic and therapeutic interventions (such as neuroimaging, drugs, and deep brain stimulation) and considering what neuroprosthetic devices tell us of the capacity of patients to experience-and functionally communicate-pain, distress, and suffering.


2006 ◽  
Vol 4 (2) ◽  
pp. 169-178 ◽  
Author(s):  
JOSEPH J. FINS

In this article, I attempt to untangle some of the cultural, philosophical, and ethical currents that informed the Schiavo case. My objective is to better apprehend what the Schiavo case means for end-of-life care in general and to assert that our discourse about the ethical issues attendant to brain injury will be impoverished if we limit our discussions about disorders of consciousness solely to the vegetative state. If we ignore emerging developments in neuroscience that are helping to elucidate the nature of these disorders and fail to broaden the conversation about brain injury, beyond the unmitigated futility of the permanent vegetative state, we will imperil others who might improve and be helped. Through such efforts we can help mitigate the tragedy of the Schiavo case and overcome the rhetoric that marked the national discourse in March 2005. Once the complexity of disorders of consciousness is appreciated, rhetorical statements about a right to die or a right to life are exposed as being incompatible with the challenge of providing care to such patients. This is especially true as neuroscience brings greater diagnostic refinement to their assessment and management, a topic addressed in this article, which specifically focuses on the clinical and ethical implications of the recently described minimally conscious state. Instead of staking out ideological positions that do not meet the needs of patients or families, we should strive to bothpreserve the right to diefor those who are beyond hopewhile affirming the right to careto those who might benefit from coming advances in neuroscience. If we can achieve that delicate balance, we will be able to transcend the partisan debate that shrouded the life and death of Theresa Marie Schiavo and begin to articulate apalliative neuroethics of carefor those touched by severe brain injury and disorders of consciousness.


2016 ◽  
Vol 44 (1) ◽  
pp. 182-193 ◽  
Author(s):  
Joseph J. Fins ◽  
Megan S. Wright ◽  
Claudia Kraft ◽  
Alix Rogers ◽  
Marina B. Romani ◽  
...  

As improvements in neuroscience have enabled a better understanding of disorders of consciousness as well as methods to treat them, a hurdle that has become all too prevalent is the denial of coverage for treatment and rehabilitation services. In 2011, a settlement emerged from a Vermont District Court case, Jimmo v. Sebelius, which was brought to stop the use of an “improvement standard” that required tangible progress over an identifiable period of time for Medicare coverage of services. While the use of this standard can have deleterious effects on those with many chronic conditions, it is especially burdensome for those in the minimally conscious state (MCS), where improvements are unpredictable and often not manifested through repeatable overt behaviors. Though the focus of this paper is on the challenges of brain injury and the minimally conscious state, which an estimated 100,000 to 200,000 individuals suffer from in the United States, the post-Jimmo arguments presented can and should have a broad impact as envisioned by the plaintiffs who brought the case on behalf of multiple advocacy groups representing patients with a range of chronic care conditions.


2020 ◽  
Vol 45 (12) ◽  
pp. 1-2
Author(s):  
Gerald J. Nora ◽  

Patients with disorders of consciousness have been at the heart of some of the most heated debates on so-called right-to-die cases such as the Terri Schiavo case. People with DOCs occupy a spectrum of disorders from coma to the minimally conscious state. Recent advances in neuroscience have led to insights on the mechanism of these disorders as well as to the revelation that some patients might have a greater degree of awareness than previously believed. These scientific developments have paralleled long-term clinical follow-ups, which have also shown more positive outcomes than expected.


2019 ◽  
Vol 28 (04) ◽  
pp. 603-615 ◽  
Author(s):  
JOSEPH J. FINS

Abstract:This paper, presented as the 2019 Cambridge Quarterly Neuroethics Network Charcot Lecture, traces the nosology of disorders of consciousness in light of 2018 practice guidelines promulgated by the American Academy of Neurology, the American College of Rehabilitation Medicine and the National Institute on Disability, Independent Living and Rehabilitation Research. By exploring the ancient origins of Jennett and Plum’s persistent vegetative state and subsequent refinements in the classification of disorders of consciousness—epitomized by the minimally conscious state, cognitive motor dissociation, and the recently described chronic vegetative state—the author argues that there is a counter-narrative to the one linking these conditions to the right to die. Instead, there is a more nuanced schema distinguishing futility from utility, informed by technical advances now able to identify covert consciousness contemplated by Jennett and Plum. Their prescience foreshadows recent developments in the disorders of consciousness literature yielding a layered legacy with implications for society’s normative and legal obligations to these patients.


2016 ◽  
Vol 97 (10) ◽  
pp. e92
Author(s):  
Rosa Martin-Mourelle ◽  
Sergio Otero-Villaverde ◽  
Carmen Crespo Lopez ◽  
Jorge Cabrera Sarmiento ◽  
Nelson Gaitan Perez ◽  
...  

2021 ◽  
Vol 70 (5) ◽  
pp. 23-36
Author(s):  
Ekaterina A. Kondratyeva ◽  
Alina O. Ivanova ◽  
Maria I. Yarmolinskaya ◽  
Elena G. Potyomkina ◽  
Natalya V. Dryagina ◽  
...  

BACKGROUND: Consciousness is the state of being awake and aware of oneself and the environment. The disorders of consciousness result from pathologies that impair awareness. The development of effective comprehensive personalized interventions contributing to the recovery of consciousness in patients with chronic disorders of consciousness is one of the most pressing and challenging tasks in modern rehabilitation. AIM: The aim of this study was to understand structural problems of the pituitary gland, blood levels of gonadotropins and melatonin as well as brain damage markers in the blood and cerebrospinal fluid in patients with chronic disorders of consciousness and to analyze the levels of the above markers among different groups of patients depending on the level of impaired consciousness. MATERIALS AND METHODS: We examined 61 chronic disorders of consciousness patients and identified three groups depending on the level of consciousness including 24 patients with unresponsive wakefulness syndrome, 24 patients with a minus minimally conscious state, and 13 patients with minimally conscious state plus. We performed magnetic resonance imaging of chiasmatic-sellar region and determined blood serum levels of follicle-stimulating and luteinizing hormones and melatonin, as well as urinary level of 6-sulfatoxymelatonin and the content of brain derived neurotrophic factor (BDNF), apoptosis antigen (APO-1), FasL, glutamate, and S100 protein in the blood serum and cerebrospinal fluid. RESULTS: The patients were examined in the age ranging from 15 to 61 years old. Patient groups were homogeneous by the level of consciousness in terms of age and duration of chronic disorders of consciousness by the time of examination. The patients did not differ in the pituitary volume regardless of the level of consciousness. No significant differences were found between the groups with different levels of consciousness when studying the levels of melatonin in the blood serum and its metabolite in the urine. A peak in melatonin secretion was detected at 3 a.m. in 54.5 % of the patients, which can be considered as a favorable prognostic marker for further recovery of consciousness. Hypogonadotropic ovarian failure was found in 34 % of the patients, with normogonadotropic ovarian failure in the remaining patients. Serum APO-1 and BDNF levels were significantly higher in patients with minimally conscious state relative to those with unresponsive wakefulness syndrome. Significantly lower levels of glutamate in the cerebrospinal fluid were detected in women with unresponsive wakefulness syndrome compared to patients with minimally conscious state. CONCLUSIONS: Further in-depth examination and accumulation of data on patients with chronic disorders of consciousness may provide an opportunity to identify highly informative markers for predicting outcomes and to develop new effective approaches to rehabilitation of consciousness in this category of patients.


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