Principles of Neurologic Ethics

2015 ◽  
Author(s):  
Thomas I. Cochrane

Many neurologic diseases affect the brain and thus cognition and personality. Many people consider some neurologic conditions “worse than death” and would prefer not to be kept alive using medical technology if there is no reasonable chance of recovery. The clinician caring for patients with neurologic disease will frequently be confronted with decisions about whether to initiate or continue life-sustaining therapies. And because neurologic disease often impairs the ability to understand and to decide, clinicians are more often called on to make decisions for patients who cannot decide for themselves. This chapter covers general principles, including respect for autonomy, beneficence, nonmaleficence, justice, informed consent, and implied consent. Discussion about making decisions for others includes competence and decision-making capacity, advance directives (powers of attorney and living wills), substituted judgment, and best interests. Decisions about life-sustaining treatment include withholding versus withdrawing, acts versus omissions, and limiting life-sustaining treatment for the patient with no surrogate. Also covered are decisions in the face of prognostic uncertainty, and futility, as well as commonly encountered problems such as states of severely disordered consciousness, coma, vegetative state, minimally conscious state, and brain death (including ethical controversies). Organ donation after both brain death and cardiac death is discussed. The section on dementia covers feeding tubes for patients with advanced dementia, the locked-in state, and neuroenhancement. Tables include elements of informed consent, elements of competence, assumed ethical priority of potential surrogates, steps that aid decision making in the face of prognostic uncertainty, and the American Academy of Neurology’s criteria for determination of brain death. This chapter includes 23 references.

2019 ◽  
Vol 45 (4) ◽  
pp. 265-270 ◽  
Author(s):  
Charles Foster

In English law there is a strong (though rebuttable) presumption that life should be maintained. This article contends that this presumption means that it is always unlawful to withdraw life-sustaining treatment from patients in permanent vegetative state (PVS) and minimally conscious state (MCS), and that the reasons for this being the correct legal analysis mean also that such withdrawal will always be ethically unacceptable. There are two reasons for this conclusion. First, the medical uncertainties inherent in the definition and diagnosis of PVS/MCS are such that, as a matter of medical fact, it can never be established, with the degree of certainty necessary to rebut the presumption, that it is not in the patient’s best interest to remain alive. And second (and more controversially and repercussively), that even if permanent unconsciousness can be unequivocally demonstrated, the presumption is not rebutted. This is because there is plainly more to human existence than consciousness (or consciousness the markers of which can ever be demonstrated by medical investigations). It can never be said that the identity of the patient whose best interests are at stake evaporates (so eliminating the legal or ethical subject) when that person ceases to be conscious. Nor can it be said that the best interests of an unconscious person do not mandate continued biological existence. We simply cannot know. That uncertainty is legally conclusive, and (subject to resource allocation questions and views about the relevance of family wishes and the previously expressed wishes of the patient) should be ethically conclusive.


2006 ◽  
Vol 13 (3) ◽  
pp. 284-291 ◽  
Author(s):  
Susan Bailey

The best interests principle is commonly utilized in acute care settings to assist with decision making about life-saving and life-sustaining treatment. This ethical principle demands that the decision maker refers to some conception of quality of life that is relevant to the individual patient. The aim of this article is to describe the factors that are required to be incorporated into an account of quality of life that will provide a morally justifiable basis for making a judgement about the future quality of life, and therefore the best interests, of critically ill patients who are mentally incompetent. This account consists of three major components - pain and suffering, body functioning, and autonomy - and is applicable in situations where very limited information is available to guide decision making. This framework helps to make decisions about the provision of life-saving treatment that are as consistent as possible in all patient situations.


2020 ◽  
Vol 15 (3) ◽  
pp. 111-119
Author(s):  
L Syd M Johnson ◽  
Kathy L Cerminara

The minimally conscious state presents unique ethical, legal, and decision-making challenges because of the combination of diminished awareness, phenomenal experience, and diminished or absent communication. As medical expertise develops and technology advances, it is likely that more and more patients with disorders of consciousness will be recognized as being in the minimally conscious state, with minimal to no ability to participate in medical decision-making. Here we provide guidance useful for surrogates and medical professionals at any medical decision point, not merely for end-of-life decision-making. We first consider the legal landscape: precedent abounds regarding unconscious patients in coma or the vegetative state/Unresponsive Wakefulness Syndrome (VS/UWS), but there is little legal precedent involving patients in the minimally conscious state. Next we consider surrogates’ ethical authority to make medical decisions on behalf of patients with disorders of consciousness. In everyday medical decision-making, surrogates generally encounter few, if any, restrictions so long as they adhere to an idealized hierarchy of decision-making standards designed to honor patient autonomy as much as possible while ceding to the reality of what may or may not be known about a patient’s wishes. We conclude by proposing an ethically informed, practical guide for surrogate decision-making on behalf of patients in the minimally conscious state.


2004 ◽  
Vol 11 (1) ◽  
pp. 77-83 ◽  
Author(s):  
Susan Bailey

Life saving or life sustaining treatment may not be instigated in the clinical setting when such treatment is deemed to be futile and therefore not in the patient’s best interests. The concept of futility, however, is related to many assumptions about quality and quantity of life, and may be relied upon in a manner that is ethically unjustifiable. It is argued that the concept of futility will remain of limited practical use in making decisions based on the best interests principle because it places such high demands on the individual responsible for decision making. This article provides a critical analysis of futility (in the context of the best interests decision-making principle), and proposes an ethically defensible notion of futility.


2017 ◽  
Vol 85 (3) ◽  
pp. 148-154 ◽  
Author(s):  
Mohamed Y Rady ◽  
Joseph L. Verheijde

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.


2018 ◽  
Vol 44 (7) ◽  
pp. 476-480 ◽  
Author(s):  
Eliana Close ◽  
Lindy Willmott ◽  
Benjamin P White

Much of the commentary in the wake of the Charlie Gard litigation was aimed at apparent shortcomings of the law. These include concerns about the perceived inability of the law to consider resourcing issues, the vagueness of the best interests test and the delays and costs of having disputes about potentially life-sustaining medical treatment resolved by the courts. These concerns are perennial ones that arise in response to difficult cases. Despite their persistence, we argue that many of these criticisms are unfounded. The first part of this paper sets out the basic legal framework that operates when parents seek potentially life-sustaining treatment that doctors believe is against a child’s best interests, and describes the criticisms of that framework. The second part of the paper suggests an alternative approach that would give decision-making power to parents, and remove doctors’ ability to unilaterally withhold or withdraw life-sustaining treatment that they regard is futile. This proposal is grounded in several values that we argue should guide these regulatory choices. We also contend that the best interests test is justifiable and since the courts show no sign of departing from it, the focus should be on how to better elucidate the underlying values driving decisions. We discuss the advantages of our proposed approach and how it would address some of the criticisms aimed at the law. Finally, we defend the current role that the judiciary plays, as an independent state-sanctioned process with a precedent-setting function.


2000 ◽  
Vol 28 (3) ◽  
pp. 267-278
Author(s):  
Raphael Cohen-Almagor

To find adequate answers to a changing reality heavily influenced by advances in technology, medical professionals have developed and adopted an array of terms that have brought new concepts into the profession. “Dignity,” “vegetative state,” “futility,” “double effect,” and “brain death” have become indispensable words in the medical setting. In the following discussion, the attention is on terminology. If we believe in phenomenology, the assumption is that we should closely reflect on the words we use in all spheres of life, especially in those that concern life and death. This article calls for a sincere discussion about these terms and concepts. The thesis put forward is that the language in the medical setting serves primarily the physicians, at times at the expense of the patients’ best interests. This language and the concepts it describes have generated an unhealthy atmosphere for patients, which might lead to undesirable actions at the end of patients’ lives.


2020 ◽  
pp. medethics-2020-106797
Author(s):  
Scott Y H Kim ◽  
Alexander Ruck Keene

The modern legal and ethical movement against traditional welfare paternalism in medical decision-making extends to how decisions are made for patients lacking decisional capacity, prioritising surrogates’ judgment about what patients would have decided over even their best interests. In England and Wales, the Mental Capacity Act 2005 follows this trend of prioritising the patient’s prior wishes, values and beliefs but the dominant interpretation in life-sustaining treatment cases does so by in effect calling those values the ‘best interests’ of the patient and focusing nearly exclusively on the ‘subjective’ viewpoint of the patient. In this article, we examine the recent Court of Protection judgment in Barnsley Hospitals NHS Foundation Trust v MSP [2020] EWCOP 26, which adhered closely to this approach, to suggest that it could have unexpected negative consequences. These include insufficient information gathering about and attention to patients’ objective medical interests, inadequacy of the evidentiary standard used for the substituted decision-making and, in some cases, even prioritising a surrogate’s current substituted judgment over the potential for an actual judgment by the patient.


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.


Author(s):  
G. T. Laurie ◽  
S. H. E. Harmon ◽  
E. S. Dove

This chapter begins with a discussion of the concept of medical futility. It examines cases dealing with selective non-treatment of the newborn and selective non-treatment in infancy. The chapter argues that while concepts such as ‘futility’ and ‘best interests’ have strong normative appeal, the search for objectivity in their application may itself be a futile exercise. The reality is that decision-makers are involved in a value-laden process, and this is no less true when the decision is taken in a court rather than at the patient’s bedside. The chapter then considers the issue of end of life, examining cases of patients in a permanent vegetative state and those in a minimally conscious state.


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