Disorders of Consciousness and the Disability Critique

Withdrawal Of Treatment ◽

Explicit Bias ◽

History Of ◽

The Right ◽

Implicit And Explicit

Some members of disability communities and activist organizations have strenuously objected to the withdrawal of life-sustaining treatment from persons in the vegetative state/unresponsive wakefulness syndrome, notably in the case of Terri Schiavo. A history of medical neglect and ableism prompts reasonable fears that the rights of disabled persons are threatened by the withdrawal of treatment from patients who lack the ability to decide for themselves. This chapter considers the disability critique of the right to die. Implicit and explicit bias against disabled persons, and the withdrawal of treatment as a means to prevent disability are examined, alongside concerns about epistemic injustice and questions about who has the epistemic authority to speak for those with disorders of consciousness. What we owe to profoundly impaired persons, including those with disorders of consciousness, is what we owe to others: care, careful consideration of their preferences and interests, and respect for their personhood.

Withdrawing treatment from patients with prolonged disorders of consciousness: the presumption in favour of the maintenance of life is legally robust

Journal of Medical Ethics ◽

10.1136/medethics-2020-106280 ◽

2020 ◽

pp. medethics-2020-106280

Author(s):

Charles Foster

Keyword(s):

Human Rights ◽

Best Interests ◽

European Convention ◽

Right To Life ◽

Withdrawing Treatment ◽

English Law ◽

The Right ◽

The Way

The question a judge has to ask in deciding whether or not life-sustaining treatment should be withdrawn is whether the continued treatment is lawful. It will be lawful if it is in the patient’s best interests. Identifying this question gives no guidance about how to approach the assessment of best interests. It merely identifies the judge’s job. The presumption in favour of the maintenance of life is part of the job that follows the identification of the question.The presumption is best regarded as a presumption of law. It has long been recognised as part of the way in which the English law discharges its obligations under Article 2 of the European Convention on Human Rights (the right to life). But even if it is a ‘mere’ evidential presumption it cannot, on the facts of most cases involving applications for the withdrawal of life-sustaining treatment from patients in prolonged disorders of consciousness, be rebutted.

Judicial oversight of life-ending withdrawal of assisted nutrition and hydration in disorders of consciousness in the United Kingdom: A matter of life and death

Medico-Legal Journal ◽

10.1177/0025817217702289 ◽

2017 ◽

Vol 85 (3) ◽

pp. 148-154 ◽

Cited By ~ 6

Author(s):

Mohamed Y Rady ◽

Joseph L. Verheijde

Keyword(s):

Vegetative State ◽

Minimally Conscious State ◽

Conscious State ◽

Disabled Persons ◽

Best Interests ◽

Life And Death ◽

Decision Making Capacity ◽

Nutrition And Hydration ◽

Minimally Conscious

Mr Justice Baker delivered the Oxford Shrieval Lecture ‘A Matter of Life and Death’ on 11 October 2016. The lecture created public controversies about who can authorise withdrawal of assisted nutrition and hydration (ANH) in disorders of consciousness (DOC). The law requires court permission in ‘best interests’ decisions before ANH withdrawal only in permanent vegetative state and minimally conscious state. Some clinicians favour abandoning the need for court approval on the basis that clinicians are already empowered to withdraw ANH in other common conditions of DOC (e.g. coma, neurological disorders, etc.) based on their best interests assessment without court oversight. We set out a rationale in support of court oversight of best interests decisions in ANH withdrawal intended to end life in any person with DOC (who will lack relevant decision-making capacity). This ensures the safety of the general public and the protection of vulnerable disabled persons in society.

Elektroconvulsietherapie bij een patiënte met een bipolaire stoornis en voorgeschiedenis van ischemisch cerebrovasculair accident

Tijdschrift voor Geneeskunde ◽

10.47671/tvg.77.21.163 ◽

2021 ◽

Author(s):

A. GOOSSENS ◽

F. VAN DEN EEDE ◽

D. SCHRIJVERS ◽

P. CRAS ◽

L. YPERZEELE ◽

...

Keyword(s):

Ischemic Stroke ◽

Electroconvulsive Therapy ◽

Recurrent Stroke ◽

Careful Consideration ◽

Treatment Resistant Depression ◽

Treatment Resistant ◽

Bipolaire Stoornis ◽

History Of ◽

Resistant Depression ◽

The Right

Electroconvulsive therapy in a patient with bipolar disorder and a history of ischemic stroke This article is a case-report of a 35 year old female patient with a history of ischemic stroke who, after careful consideration and additional investigations, received a treatment with electroconvulsive therapy (ECT) for a treatment-resistant depression in a rapid cycling bipolar 1 disorder. A thorough neurological evaluation in patients with a history of stroke is important as stated by the guidelines. As the patient was clinically and neurologically stable since her stroke 2 years prior, the risk of complications due to ECT was estimated to be low. The literature shows that ECT is not associated with a higher risk of a recurrent stroke, when taking the right indications and monitoring into account.

Uncertainty

10.1093/med/9780190943646.003.0003 ◽

2021 ◽

pp. 44-72

Author(s):

L. Syd M Johnson

Keyword(s):

Decision Making ◽

21St Century ◽

Ethical Decision ◽

Ethical Decision Making ◽

Vegetative State ◽

High Rate ◽

States Of Consciousness ◽

History Of ◽

Medical Uncertainty

The relatively brief history of disorders of consciousness has seen two epistemic eras—the first was marked by certainty, both ethical and epistemic, about the vegetative state. The second era has been notable for its epistemic and ethical uncertainty. This chapter looks at the 21st century neuroscientific revolution in disorders of consciousness and its ongoing reverberations. Uncertainty about these disorders continues to increase. There are ontological and epistemic doubts about behavioral diagnosis, which looks for the contents of consciousness, or local states of consciousness, while trying to capture the global states of consciousness that are of most diagnostic and ethical interest. The scientific and medical uncertainty, and the high rate of misdiagnosis, complicate ethical decision-making for patients with these disorders.

Disorders of Consciousness, Past, Present, and Future

Cambridge Quarterly of Healthcare Ethics ◽

10.1017/s0963180119000719 ◽

2019 ◽

Vol 28 (04) ◽

pp. 603-615 ◽

Cited By ~ 2

Author(s):

JOSEPH J. FINS

Keyword(s):

Independent Living ◽

Vegetative State ◽

Persistent Vegetative State ◽

Minimally Conscious State ◽

Rehabilitation Medicine ◽

Conscious State ◽

Legal Obligations ◽

The Right ◽

Minimally Conscious

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.

The Brophy Case: The use of Artificial Hydration and Nutrition

The Linacre Quarterly ◽

10.1080/00243639.1987.11877894 ◽

1987 ◽

Vol 54 (2) ◽

pp. 63-72 ◽

Cited By ~ 4

Author(s):

Philip Boyle ◽

Larry King ◽

Kevin O'Rourke

Keyword(s):

Vegetative State ◽

Persistent Vegetative State ◽

Major Surgery ◽

Artificial Nutrition ◽

Artificial Nutrition And Hydration ◽

Left Posterior ◽

Nutrition And Hydration ◽

Basilar Tip Aneurysm ◽

The Right

Case Study: Paul Brophy, a 48-year old fireman living in Boston, married to Patricia Brophy for 27 years, suffered a subarachnoid hemorrhage as a result of a ruptured basilar tip aneurysm on March 22, 1983. In order to correct the aneurysm. Brophy underwent major surgery involving a right frontotemporal craniotomy and a clipping of the basilar tip aneurysm. Postoperatively, he never regained consciousness, and has remained in a persistent vegetative state. Subsequent to his surgery of April 6, 1983 and prior to his discharge on June 28, 1983, Brophy received multiple CT scans, which showed a complete infarction (destruction of tissue secondary to lack of blood flow) of his left posterior cerebral artery and infarction of the right temporal lobe of the brain. In January, 1985, Patricia Brophy, with the consent of the five Brophy children, all of whom are adults, petitioned to have all life sustaining treatment removed from her husband, including the discontinuation of all artificial nutrition and hydration. What decision should the court make?

Self-stigma toward nonsuicidal self-injury (NSSI): An examination of implicit and explicit attitudes towards self-injury

10.31234/osf.io/qcs84 ◽

2020 ◽

Author(s):

Marilyn Piccirillo ◽

Taylor Burke ◽

Samantha Moore-Berg ◽

Lauren B Alloy ◽

Richard Heimberg

Keyword(s):

Explicit Attitudes ◽

Significant Relationships ◽

Self Injury ◽

Objective Evidence ◽

Explicit Bias ◽

History Of ◽

Tissue Alteration ◽

Implicit And Explicit ◽

Implicit And Explicit Attitudes ◽

Nonsuicidal Self Injury

Objective: Evidence suggests that individuals without a history of nonsuicidal self-injury (NSSI) are likely to view NSSI as a stigmatized behavior. However, there is limited evidence evaluating the presence of self-stigma among individuals who have engaged in NSSI. Methods: We recruited a university sample (n = 351) and employed implicit and explicit measures to examine the degree of stigmatization towards those with NSSI scarring, as compared to nonintentional disfigurement (i.e., accidental scarring), and to tattoos (i.e., a culturally-sanctioned form of intentional tissue alteration). We examined the extent to which bias is related to indicators of NSSI severity among those with a history of NSSI. Results: We provide evidence that negative biases toward NSSI may represent the effects of self-stigma. However, findings suggest that biases were generally attenuated among participants with a history of NSSI as compared to those without. Participants who had lower levels of NSSI explicit bias were more likely to have a history of more severe engagement in NSSI; however, no significant relationships were found between implicit bias and NSSI severity indicators. Conclusions: We present a theoretical rationale for attenuated biases among individuals with a history of NSSI and discuss implications of this research for NSSI recovery.

Withdrawing treatment from patients with prolonged disorders of consciousness: the wrong answer is what the wrong question begets

Journal of Medical Ethics ◽

10.1136/medethics-2020-106063 ◽

2020 ◽

Vol 46 (8) ◽

pp. 561-562

Author(s):

Daniel Wei Liang Wang

Keyword(s):

Decision Makers ◽

Best Interests ◽

Wrong Answer ◽

Legal Perspective ◽

Pros And Cons ◽

Present Response ◽

The Right ◽

Contrary Evidence

In a recent paper, Charles Foster argued that the epistemic uncertainties surrounding prolonged disorders of consciousness (PDOC) make it impossible to prove that the withdrawal of life-sustaining treatment can be in a patient’s best interests and, therefore, the presumption in favour of the maintenance of life cannot be rebutted. In the present response, I argue that, from a legal perspective, Foster has reached the wrong conclusion because he is asking the wrong question. According to the reasoning in two leading cases—Bland and James—the principle of respect for autonomy creates a persuasive presumption against treatment without consent. Therefore, it is the continuation of treatment that requires justification, rather than its withdrawal. This presumption also works as the tiebreaker determining that treatment should stop if there is no persuasive evidence that its continuation is in the best interests of the patient. The presumption in favour of the maintenance of life, on the other hand, should be understood as an evidential presumption on a factual issue that is assumed to be true if unchallenged. However, the uncertainties regarding PDOC actually give reasons for displacing this evidential presumption. Consequently, decision-makers will have to weigh up the pros and cons of treatment having the presumption against treatment without consent as the tiebreaker if the evidence is inconclusive. In conclusion, when the right question is asked, Foster’s argument can be turned on its head and uncertainties surrounding PDOC weigh in to justify the interruption of treatment in the absence of compelling contrary evidence.

Affirming the right to care, preserving the right to die: Disorders of consciousness and neuroethics after Schiavo

Palliative & Supportive Care ◽

10.1017/s1478951506060238 ◽

2006 ◽

Vol 4 (2) ◽

pp. 169-178 ◽

Cited By ~ 42

Author(s):

JOSEPH J. FINS

Keyword(s):

Brain Injury ◽

Ethical Issues ◽

Vegetative State ◽

Minimally Conscious State ◽

Conscious State ◽

Right To Die ◽

Ethical Implications ◽

The Right ◽

Minimally Conscious

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.

Z-line degradation and phagocytosis of sarcomeric fragments in myonecrosis

Proceedings, annual meeting, Electron Microscopy Society of America ◽

10.1017/s0424820100077529 ◽

1983 ◽

Vol 41 ◽

pp. 790-791

Author(s):

Melinda L. Estes ◽

Samuel M. Chou

Keyword(s):

Vastus Lateralis ◽

Inflammatory Myopathy ◽

Muscle Disease ◽

White Female ◽

Inflammatory Cell Infiltrate ◽

Limb Weakness ◽

Muscle Diseases ◽

History Of ◽

The Right ◽

Mononuclear Inflammatory Cell

Many muscle diseases show common pathological features although their etiology is different. In primary muscle diseases a characteristic finding is myofiber necrosis. The mechanism of myonecrosis is unknown. Polymyositis is a primary muscle disease characterized by acute and subacute degeneration as well as regeneration of muscle fibers coupled with an inflammatory infiltrate. We present a case of polymyositis with unusual ultrastructural features indicative of the basic pathogenetic process involved in myonecrosis.The patient is a 63-year-old white female with a one history of proximal limb weakness, weight loss and fatigue. Examination revealed mild proximal weakness and diminished deep tendon reflexes. Her creatine kinase was 1800 mU/ml (normal < 140 mU/ml) and electromyography was consistent with an inflammatory myopathy which was verified by light microscopy on biopsy muscle. Ultrastructural study of necrotizing myofiber, from the right vastus lateralis, showed: (1) degradation of the Z-lines with preservation of the adjacent Abands including M-lines and H-bands, (Fig. 1), (2) fracture of the sarcomeres at the I-bands with disappearance of the Z-lines, (Fig. 2), (3) fragmented sarcomeres without I-bands, engulfed by invading phagocytes, (Fig. 3, a & b ), and (4) mononuclear inflammatory cell infiltrate in the endomysium.