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The Journal of clinical ethics 01/2012; 23(3):221-223. · 0.47 Impact Factor
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ABSTRACT: Central to ethically justified clinical trial design is the need for an informed consent process responsive to how potential subjects actually comprehend study participation, especially study goals, risks, and potential benefits. This will be particularly challenging when studying deep brain stimulation and whether it impedes symptom progression in Parkinson's disease, since potential subjects will be Parkinson's patients for whom deep brain stimulation will likely have therapeutic value in the future as their disease progresses.
As part of an expanded informed consent process for a pilot Phase I study of deep brain stimulation in early stage Parkinson's disease, an ethics questionnaire composed of 13 open-ended questions was distributed to potential subjects. The questionnaire was designed to guide potential subjects in thinking about their potential participation.
While the purpose of the study (safety and tolerability) was extensively presented during the informed consent process, in returned responses 70 percent focused on effectiveness and 91 percent included personal benefit as poten- tial benefit from enrolling. However, 91 percent also indicated helping other Parkinson's patients as motivation when considering whether or not to enroll.
This combination of responses highlights two issues to which investigators need to pay close attention in future trial designs: (1) how, and in what ways, informed consent processes reinforce potential subjects' preconceived understandings of benefit, and (2) that potential subjects see themselves as part of a community of Parkinson's sufferers with responsibilities extending beyond self-interest. More importantly, it invites speculation that a different paradigm for informed consent may be needed.
The Journal of clinical ethics 01/2012; 23(3):207-16. · 0.47 Impact Factor
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Chandler E Gill,
Laura A Allen,
Peter E Konrad,
Thomas L Davis, Mark J Bliton,
Stuart G Finder,
Michael G Tramontana,
C Chris Kao,
Michael S Remple,
Courtney H Bradenham,
P David Charles
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ABSTRACT: Subthalamic nucleus (STN) deep brain stimulation (DBS) is an effective intervention in advanced Parkinson's disease (PD), but its efficacy and safety in early PD are unknown. We are conducting a randomized pilot trial investigating DBS in early PD. This report describes one participant who received bilateral STN-DBS.
Thirty subjects have been randomized to either optimal drug therapy (ODT) or DBS + ODT. Microelectrode recordings from the STN and substantia nigra are collected at implantation. The Unified Parkinson's Disease Rating Scale Motor Subscale (UPDRS-III) is administered in the ON and OFF states semi-annually and neuropsychological function and quality of life are assessed annually. We describe a 54-year-old man with a two-year history of PD who was randomized to DBS + ODT and followed for two years.
The subject showed a lower STN to substantia nigra ratio of neuronal activity than advanced PD patients, and higher firing rate than non-PD patients. The subject's total UPDRS and UPDRS-III scores improved during the two-year follow-up, while his OFF UPDRS-III score and levodopa equivalent daily dose increased. Quality of life, verbal fluency, and verbal learning improved. He did not experience any serious adverse events.
This report details the first successful application of bilateral STN-DBS for early-stage PD during a clinical trial.
Neuromodulation 09/2011; 14(6):515-21; discussion 521-2. · 1.19 Impact Factor
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ABSTRACT: Clinical ethics literature typically presents ethics consultations as having clear beginnings and clear ends. Experience in actual clinical ethics practice, however, reflects a different characterization, particularly when the moral experiences of ethics consultants are included in the discussion. In response, this article emphasizes listening and learning about moral experience as core activities associated with clinical ethics consultation. This focus reveals that responsibility in actual clinical ethics practice is generated within the moral scope of an ethics consultant's activities as she or he encounters the unique and specific features that emerge from interactions with a specific patient, or family, or practitioner within a given situation and over time. A long-form narrative about an ethics consultant's interactions is interwoven with a more didactic discussion to highlight the theme of responsibility and to probe questions that arise regarding follow-up within the practice of clinical ethics consultation.
Bioethics 09/2011; 25(7):413-24. · 1.60 Impact Factor
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HEC Forum 07/2010;
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Formosan journal of medical humanities 05/2010; 11(1&2):93-102.
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ABSTRACT: Guiding our response in this essay is our view that current efforts to demarcate the role of the clinical ethicist risk reducing its complex network of authorizations to sites of power and payment. In turn, the role becomes susceptible to various ideologies-individualisms, proceduralisms, secularisms-that further divide the body from the web of significances that matter to that body, where only she, the patient, is located. The security of policy, standards, and employment will pull against and eventually sever the authorization secured by authentic moral inquiry. Instead of asking "What do I need to know?", the question animating the drive to standardize will be "What is the policy or standard?" The claims of the authors in this issue of HEC Forum confirm these suspicions.
HEC Forum 03/2010; 22(1):73-84.
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Mark J Bliton
Clinical Obstetrics and Gynecology 10/2005; 48(3):595-607. · 1.93 Impact Factor
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Mark J Bliton
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ABSTRACT: This essay considers Richard Zaner's storytelling in Troubled Voices as a form of possibilizing which uses the stories to exemplify important moral themes such as contingency and freedom. Distinguishing between activities of moral discovery through the telling of a story and "posing" in the sense of writing to tell the "moral" of the story, I suggest that something crucial goes on for Zaner in his own tellings. Several of the more insistent implications Zaner reveals about the moral relationships encountered in the activity of clinical ethics consultation are examined in that light, especially regarding this question: is it more beneficial, or harmful, to articulate elements of core meanings and values that are entailed in individual viewpoints, which, prior to an ethics consultant's participation, may have remained unspoken and possibly unacknowledged?
Theoretical Medicine and Bioethics 02/2005; 26(1):25-53. · 0.78 Impact Factor
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Mark J Bliton
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ABSTRACT: This article considers the ethical significance of a moral belief common among pregnant women (and their partners) who seek open uterine repair for fetal spina, namely that their fetuses are already "babies." The need to recognize and interact sensitively with a pregnant woman's vulnerability to her own beliefs and concerns regarding potential disabilities, the fetal intervention, and its potential outcome is emphasized. Such recognition and explicit discussions are ethically important for informed consent and to safeguard against the judgments, enthusiasms, and biases of surgeons and other team members.
Clinics in Perinatology 10/2003; 30(3):449-64, v-vi. · 2.46 Impact Factor
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ABSTRACT: While many have suggested that to withdraw medical interventions is ethically equivalent to withholding them, the moral complexity of actually withdrawing life supportive interventions from a patient cannot be ignored. Utilizing interplay between expository and narrative styles, and drawing upon our experiences with patients, families, nurses, and physicians when life supports have been withdrawn, we explore the changeable character of "boundaries" in end-of-life situations. We consider ways in which boundaries imply differences--for example, between cognition and performance--and how the encounter with boundaries can generate altered meanings important for understanding decisions and actions in these contexts. We conclude that the reliance on mere roles to support the moral weight of withdrawing medical interventions is inadequate. Roles that lead us to such moments are exceeded by the responsibility encountered in such moments. And here, we suggest, is the momentous character of withdrawal: it presents the grave astonishment, the trembling awe, in the "not-being-there" of the other in death.
Theoretical Medicine and Bioethics 02/2002; 23(3):233-58. · 0.78 Impact Factor
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ABSTRACT: Baylis, Tomlinson, and Hoffmaster each raise a number of critiques in response to Bliton's manuscript. In response, we focus on three themes we believe run through each of their critiques. The first is the ambiguity between the role of ethics consultation within an institution and the role of the actual ethics consultant in a particular situation, as well as the resulting confusion when these roles are conflated. We explore this theme by revisiting the question of What's going on? in clinical ethics consultations. Moving from those issues associated with the role of the ethics consultant to those associated with the role of inquiry within the practice of ethics consultation, we then take up the serious challenge that Bliton seems shackled by the assumptions and institutional dispositions embedded in the medical culture in which he is working. This reveals the second theme, namely that there is a risk of co-optation when acting in a role that derives its legitimacy from institutional sources. Finally, we focus on an even more problematic implication stemming from the first two, namely that the focus on institutional power as the crucial factor for determining ethical significance has the effect of distorting, and perhaps obscuring, other forms of relational, interpersonal, and moral meaning.
Human Studies 12/1998; 22(1):69-97. · 0.21 Impact Factor
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ABSTRACT: ... While Spiegelberg emphasizes these "cosmic" -- perhaps more accurately, ontological -- features of birth and undeserved inequalities, it seems to us not inappropriate to suggest that what Douard terms "outrage" and Annas "instinct" go in the same direction. When impairment occurs without desert, something should be done to help. This is all the more true when, as in cases of chronic affliction that concern Douard or the case of the Siamese twins that fascinates Annas, something helpful can be done. Then, in Spiegelberg's words, what is "undeserved" demands redress. In these terms, each of these authors points to a deeply rooted sense of our common human lot. Or, in Albert Schweitzer's apt phrase, to witness such undeserved misfortune is to awaken "a moral sense that is usually dormant but that on special occasions can be brought to the surface." Chronic illnesses, we suggest -- no less than the "accidents of birth" that concern Spiegelberg -- are just such "special occasions" for awakening that "moral sense" suggested by Douard in his appeal to the "outrage" of doing nothing for, or refusing to help, the chronically ill.
The Journal of clinical ethics 02/1991; 2(3):157-9. · 0.47 Impact Factor
