Abstract In a recent issue of Neuroethics , I considered whether the notion of human dignity could help us in solving the moral problems the advent of the diagnostic category of minimally conscious state (MCS) has brought forth. I argued that there is no adequate account of what justifies bestowing all MCS patients with the special worth referred to as human dignity. Therefore, I concluded, unless that difficulty can be solved we should resort to other values than human dignity in (...) addressing the moral problems MCS poses. In his new book Christopher Kaczor criticizes the argument I put forward. Below, I respond to Kaczor’s criticism. I maintain that the considerations he presents do not undermine my argument nor succeed in providing adequate justification for the view that all MCS patients possess the worth referred to as human dignity. Content Type Journal Article Category Original Paper Pages 1-11 DOI 10.1007/s12152-011-9147-z Authors Jukka Varelius, Department of Behavioural Sciences and Philosophy, University of Turku, Turku, 20014 Finland Journal Neuroethics Online ISSN 1874-5504 Print ISSN 1874-5490. (shrink)

Patients in a vegetative state/ unresponsive wakefulness syndrome (VS/UWS) pose ethical dilemmas to those involved. Many conflicts occur between professionals and families of these patients. In the Netherlands physicians are supposed to withdraw life sustaining treatment once recovery is not to be expected. Yet these patients have shown to survive sometimes for decades. The role of the families is thought to be important. The aim of this study was to make an inventory of the professional perspective on conflicts in long-term (...) care of patients in VS/UWS. A qualitative study of transcripts on 2 Moral Deliberations (MD’s) in 2 cases of patients in VS/UWS in long-term care facilities. Six themes emerged: 1) Vision on VS/UWS; 2) Treatment and care plan; 3) Impact on relationships; 4) Feelings/attitude; 5) Communication; 6) Organizational aspects. These themes are related to professionals and to what families had expressed to the professionals. We found conflicts as well as contradictory feelings and thoughts to be a general feature in 4 of these themes, both in professionals and families. Conflicts were found in several actors: within families concerning all 6 themes, in nurse teams concerning the theme treatment and care plan, and between physicians concerning all 6 themes. Different visions, different expectations and hope on recovery, deviating goals and contradictory feelings/thoughts in families and professionals can lead to conflicts over a patient with VS/UWS. Key factors to prevent or solve such conflicts are a carefully established diagnosis, clarity upon visions, uniformity in treatment goals and plans, an open and empathic communication, expertise and understanding the importance of contradictory feelings/thoughts. Management should bridge conflicts and support their staff, by developing expertise, by creating stability and by facilitating medical ethical discourses. Shared compassion for the patient might be a key to gain trust and bridge the differences from non-shared to shared decision making. (shrink)

A pressing issue in neuroscience is the high rate of misdiagnosis of disorders of consciousness. As new research on patients with disorders of consciousness has revealed surprising and previously unknown cognitive capacities, the need to develop better and more reliable methods of diagnosing these disorders becomes more urgent. So too the need to expand our ethical and social frameworks for thinking about these patients, to accommodate new concerns that will accompany new revelations. A recent study on trace conditioning and learning (...) in vegetative and minimally conscious patients shows promise as a potential diagnostic and prognostic tool, both for differentiating between states of diminished consciousness, and for predicting patient outcomes, but it also generates fresh concerns about quality of life in patients previously thought to be completely unaware. Optimism about progress in diagnosing and treating disorders of consciousness must be tempered by the understanding that not all progress will necessarily be good for all patients. The prognosis for most patients remains bleak, and we must remain vigilant to acute questions and concerns about welfare and quality of life. (shrink)

Abstract:In the 2015 David Kopf Lecture on Neuroethics of the Society for Neuroscience, Dr. Joseph Fins presents his work on neuroethics and disorders of consciousness through the experience of Maggie and Nancy Worthen, a young woman who sustained a severe brain injury and her mother who cared for her. The central protagonists in his book,Rights Come to Mind: Brain Injury, Ethics and the Struggle for Consciousness(Cambridge University Press, 2015), their experience is emblematic of the challenges faced by families touched by (...) severe brain injury and the possibility for improved diagnosis and treatment offered by progress in neuroscience. By telling their story, and those of other families interviewed as part of the research forRights Come to Mind,Fins calls for improved care for this population arguing that this is both an access to care issue and a civil and disability rights issue worthy of greater societal attention. (shrink)

Expressing doubts about death criteria can serve healthy purposes, but can also cause a number of harms, including decreased organ donation rates and distress for donor families and health care staff. This paper explores the various causes of doubts about death criteria—including religious beliefs, misinformation, mistrust, and intellectual questions—and recommends responses to each of these. Some recommended responses are relatively simple and noncontroversial, such as providing accurate information. However, other responses would require significant changes to the way we currently do (...) business. Policymakers should establish minimum national standards for determining death to foster a trustworthy system; academics and publishers have a duty to publish only materials that substantially engage and advance the debate to minimize the harm caused by divided expert opinion; and opposition to the dead donor rule should be conceptually separated from doubts about death criteria. (shrink)