The management of patients suffering from chronic disorders of consciousness inevitably raises important ethical questions about the end of life decisions. Some ethical positions claim respect of human life sacredness and the use of good medical practices require allowing DOC patients to live as long as possible, since no one can arbitrarily end either his/her or others’ life. On the other hand, some currents of thought claim respect of human life dignity, patients’ wishes, and the right of free choice entail (...) allowing the withdrawal of life sustaining therapy. This could happen when patients believe their own life to be not worth living, or if therapy is not very beneficial, excessively burdensome, or even futile. Indeed, the decision to withdraw therapies in a DOC patient should be guided by reliable information about DOC diagnosis and prognosis and on how the patient would wish to be treated in such a condition. Taking into account such issues, it would be possible to make the decision that more adequately fits a DOC patient’s best interest. This review aims to overview the range of ethical issues referring to end-of-life decisions in DOC patients, with regard to the thorny debate on the sacredness and dignity of human life. (shrink)

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, 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. (shrink)

Grant Gillett's (2009) welcome and extremely thought-provoking target article addresses many complex issues of such far-ranging consequence that it seems impossible to provide a commentary worthy o...

In the target article, Grant Gillett (2009) has taken an important step toward greater synthesis of neuroethics, philosophy, and neuroscience. In his neo-Aristotelian account, Gillett posits a nece...

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)

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)