Different sort of people are interested in personal identity. Philosophers frequently ask what it takes to remain oneself. Caregivers imagine their patients’ experience. But both philosophers and caregivers think from the armchair: they can only make assumptions about what it would be like to wake up with massive bodily changes. Patients with a locked-in syndrome (LIS) suffer a full body paralysis without cognitive impairment. They can tell us what it is like. Forty-four chronic LIS patients and 20 age-matched healthy medical (...) professionals answered a 15-items questionnaire targeting: (A) global evaluation of identity, (B) body representation and (C) experienced meaning in life. In patients, selfreported identity was correlated with B and C. Patients differed with controls in C. These results suggest that the paralyzed body remains a strong component of patients’ experienced identity, that patients can adjust to objectives changes perceived as meaningful and that caregivers fail in predicting patients’ experience. (shrink)

This article argues that hope is of value in clinical ethics and that it can be important for clinicians to be sensitive to both the risks of false hope and the importance of retaining hope. However, this sensitivity requires an understanding of the complexity of hope and how it bears on different aspects of a well-functioning doctor-patient relationship. We discuss hopefulness and distinguish it from three different kinds of hope, or ‘hopes for’, and then relate these distinctions back to differing (...) accounts of autonomy. This analysis matters because it shows how an overly narrow view of the ethical obligations of a clinician to their patient, and autonomy, might lead to scenarios where patients regret the choices they make. (shrink)

There are, I thinks too many morally significant exceptions to accept the physician's rationales or the bioethicist's criticisms, stated siveepingly. Physicians need to take account of the harms caused by loss of hopes, especially false hopes due to deception, as Ivell, as of the harms of successfully maintained deceptive hopes. As for autonomy, hopes even..

In the care of patients with disorders of consciousness (DOC), some ethical difficulties stem from the challenges of accurate diagnosis and the uncertainty of prognosis. Current neuroimaging research on these disorders could eventually improve the accuracy of diagnoses and prognoses and therefore change the context of end-of-life decision making. However, the perspective of healthcare professionals on these disorders remains poorly understood and may constitute an obstacle to the integration of research. We conducted a qualitative study involving healthcare professionals from an (...) acute care university medical center. A short questionnaire captured demographic data as well as the experience of participants with DOC patients. A semi-structured interview was used to explore attitudes toward ethical issues identified in a previous literature review. Qualitative content analysis of interviews was conducted with the NVivo software. Accurate diagnosis among DOC is often regarded as a challenge, but this was generally not the case for our participants because most reported high confidence in DOC diagnoses. However, participants reported struggling with prognosis, especially because of its essential role for end-of-life decision making and communication with families. Variability of opinion between healthcare professionals was reported and identified by some as a minor issue while others stressed how families struggle with different medical opinions. End-of-life decision making encompassed a large proportion of ethical challenges in these patients, and the removal of artificial nutrition and hydration created significant discomfort in a minority of participants. The concept of futility was subject to wide-ranging understandings with both favorable and unfavorable opinions. Our data suggest that to ensure the incorporation of new evidence-based advances, attention should be directed to the real-world practices and challenges of accurate diagnosis and prognosis. Given pervasive challenges in end-of-life care, we recommend improved training of healthcare professionals in the care of patients with DOC, particularly in end-of life care, understanding the context of decision making, and determining how to optimally integrate new neuroscience research on the care of patients with DOC. (shrink)

Patients in the vegetative state are wholly unaware of themselves, or their surroundings. However, a minority of patients diagnosed as vegetative are actually aware. What is the well-being of these patients? How are their lives going, for them? It has been argued that on a reasonable conception of well-being, these patients are faring so poorly that it may be in their best interests not to continue existing. I argue against this claim. Standard conceptions of well-being do not clearly support the (...) conclusion that these patients would be better off having life-sustaining treatment withdrawn, and in fact, it may be possible for these patients to retain a passable level of well-being. I suggest that further research into the subjective experiences of these patients will allow us to better promote their well-being. (shrink)