Due to improvements in medicine, the figures of patients with disorders of consciousness (DoC) are increasing. Diagnostics of DoC and prognostication of rehabilitation outcome is challenging but necessary to evaluate recovery potential and to decide on treatment options. Such decisions should be made by doctors and patients’ surrogates based on medico-ethical principles. Meeting information needs and communicating effectively with caregivers as the patients´ most common surrogate-decision makers is crucial, and challenging when novel tech-nologies are introduced. This qualitative study aims to (...) explore information needs of informal DoC caregivers, how they manage the obtained information and their perceptions and experiences with caregiver-physician communication in facilities that implemented innovative neurodiagnostics studies. In 2021, we conducted semi-structured interviews with nine caregivers of clinically stable DoC patients in two rehabilitation centers in Italy and Germany. Participants were selected based on consecutive purposeful sampling. Caregivers were recruited at the facilities after written informed consent. All interviews were recorded, transcribed verbatim and translated. For analysis, we used reflexive thematic analysis according to Braun & Clarke (2006). Caregivers experienced the conversations emotionally, generally based on the value of the information provided. They reported to seek positive information, comfort and empathy with-in the communication of results of examinations. They needed detailed information to gain a deep understanding and a clear picture of their loved-one’s condition. The results suggest a mismatch between the perspectives of caregivers and the perspectives of medical profession-als, and stress the need for more elaborate approaches to the communication of results of neu-rodiagnostics studies. (shrink)

The application of neuroimaging technology to the study of the injured brain has transformed how neuroscientists understand disorders of consciousness, such as the vegetative and minimally conscious states, and deepened our understanding of mechanisms of recovery. This scientific progress, and its potential clinical translation, provides an opportunity for ethical reflection. It was against this scientific backdrop that we convened a conference of leading investigators in neuroimaging, disorders of consciousness and neuroethics. Our goal was to develop an ethical frame to move (...) these investigative techniques into mature clinical tools. This paper presents the recommendations and analysis of a Working Meeting on Ethics, Neuroimaging and Limited States of Consciousness held at Stanford University during June 2007. It represents an interdisciplinary approach to the challenges posed by the emerging use of neuroimaging technologies to describe and characterize disorders of consciousness. (shrink)

This article critically examines the recent papal allocution on patients in a persistent vegetative state with regard to the appropriate conditions for considering “reformable statements.” In the first part of the article, the purpose and meaning of the allocution are assessed. O'Rourke concludes that given consideration of the individual patient's best interest, prolonging artificial nutrition and hydration is not, in every case, the best option. Although he stresses favorability for preservation of the life of the patient through artificial nutrition and (...) hydration, costs and benefits to the patient should be weighed. Ultimately, he argues in favor of leaving the decision to the patient, his caregivers, and others immediately involved in the case. (shrink)

This article looks at the late John Paul II's allocution on artificial nutrition and hydration (ANH) and the implications his statement will have on the ordinary-extraordinary care distinction. The purpose of this article is threefold: first, to examine the medical condition of a persistent vegetative state (PVS); second, to examine and analyze the Catholic Church's tradition on the ordinary-extraordinary means distinction; and third, to analyze the ethics behind the pope's recent allocution in regards to PVS patients as a matter of (...) conscience. Rather than providing clarification, I argue that the papal allocution has raised many difficult questions. People in situations where decisions must be made about withdrawal or continued ANH are in need of guidance. Moreover, additional analysis is needed to determine whether the papal allocution is in conflict with the traditional Catholic medical ethics understanding of the ordinary-extraordinary care distinction. (shrink)

To aid neuroscientists in determining the ethical limits of their work and its applications, neuroethical problems need to be identified, catalogued, and analyzed from the standpoint of an ethical framework. Many hospitals have already established either autonomy or welfare-centered theories as their adopted ethical framework. Unfortunately, the choice of an ethical framework resists resolution: each of these two moral theories claims priority at the exclusion of the other, but for patients with neurological pathologies, concerns about the patient’s welfare are treated (...) as meaningless without consideration of the patient’s expressed wishes, and vice versa. Ethicists have long fought over whether suffering or autonomy should be our primary concern, but in neuroethics a resolution of this question is essential to determine the treatment of patients in medical and legal limbo. I propose a solution to this problem in the form of ethical dualism. This is a conservative measure in that it retains both sides of the debate: both happiness and autonomy have intrinsic value. However, this move is often met with resistance because of its more complex nature—it is more difficult to make a decision when there are two parallel sets of values that must be considered than when there is just one such set. The monist theories, though, do not provide enough explanatory power: namely, I will present two recently publicized cases where it is clear that neither ethical value on its own (neither welfare nor autonomy) can fully account for how a vegetative patient should be treated. From the neuroethical cases of Terri Schiavo and Lauren Richardson, I will argue that a dualist framework is superior to its monist predecessors, and I will describe the main features of such an account. (shrink)

If I were the organizer of a conference on brain imaging, consciousness, and ethics, I would give it the name encephaloethics, the ethics of the brain. I know well that many commentators disdain th...

This paper argues that competing ethical positions in the Terri Schiavo debate—calls to “err on the side of life” or to “err on the side of liberty”—aim to regulate life and not to defend its sanctity or freedom. Advancing analyses of the “biopolitics” of the case, I show how Terri Schiavo’s status as a speaking-being is an important question for both positions. Informed by feminist concerns about the marginalization and ventriloquization of voices, I argue that bioethicists should “lend an ear” (...) to the voices of Terri Schiavo. (shrink)

This article critically examines the recent papal allocution on patients in a persistent vegetative state with regard to the appropriate conditions for considering “reformable statements.” In the first part of the article, the purpose and meaning of the allocution are assessed. O'Rourke concludes that given consideration of the individual patient's best interest, prolonging artificial nutrition and hydration is not, in every case, the best option. Although he stresses favorability for preservation of the life of the patient through artificial nutrition and (...) hydration, costs and benefits to the patient should be weighed. Ultimately, he argues in favor of leaving the decision to the patient, his caregivers, and others immediately involved in the case. (shrink)

Pain, suffering and positive emotions in patients in vegetative state/unresponsive wakefulness syndrome (VS/UWS) and minimally conscious states (MCS) pose clinical and ethical challenges. Clinically, we evaluate behavioural responses after painful stimulation and also emotionally-contingent behaviours (e.g., smiling). Using stimuli with emotional valence, neuroimaging and electrophysiology technologies can detect subclinical remnants of preserved capacities for pain which might influence decisions about treatment limitation. To date, no data exist as to how healthcare providers think about end-of-life options (e.g., withdrawal of artificial nutrition (...) and hydration) in the presence or absence of pain in non-communicative patients. Here, we aimed to better clarify this issue by re-analyzing previously published data on pain perception (Prog Brain Res 2009 177, 329–38) and end-of-life decisions (J Neurol 2010 258, 1058–65) in patients with disorders of consciousness. In a sample of 2259 European healthcare professionals we found that, for VS/UWS more respondents agreed with treatment withdrawal when they considered that VS/UWS patients did not feel pain (77%) as compared to those who thought VS/UWS did feel pain (59%). This interaction was influenced by religiosity and professional background. For MCS, end-of-life attitudes were not influenced by opinions on pain perception. Within a contemporary ethical context we discuss (1) the evolving scientific understandings of pain perception and their relationship to existing clinical and ethical guidelines; (2) the discrepancies of attitudes within (and between) healthcare providers and their consequences for treatment approaches, and (3) the implicit but complex relationship between pain perception and attitudes toward life-sustaining treatments. (shrink)