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When doctors and daughters disagree: twenty-two days and two blinks of an eye.

ABSTRACT: A cornerstone of American medical ethics is the right to say, "Keep your hands off of me," to decline medical treatment. A central problem is how to decide about individuals who have become incapacitated and can no longer request or refuse potentially life-sustaining treatment. An advance directive is a formal attempt to protect people's right to autonomy when they are no longer autonomous. As such, it assumes that previously expressed wishes are precise and immutable, but many families make decisions together, and individuals may negotiate, compromise, and modify their genuine preferences, especially when novel threats arise, and the stakes are high. The current article describes a case in which two daughters overruled a patient's explicit preference to refuse life-sustaining treatment, leading to burdensome illness before death. In the end, the mother seemed to understand her children's needs and seemed willing, at least in retrospect, to have met those needs. After the death of this individual, we continued to talk with the daughters and videotaped an interview in which they shared their perspectives on the case. The daughters consented to be videotaped and to share the video with the medical community (available in online version of article). Their forceful devotion to their mother and their search in retrospect for what could have been done differently has completely changed our understanding of events. We believe that the daughters' behavior is not the indefensible breach of respect for person that it seemed to be. Their mother's true wishes might well have included a desire to help her children during her own dying. Family members' preferences are likely to be important considerations for many people, although the possibility of coercion has to be acknowledged as well. Accommodating this level of decision-making complexity is highly problematic for our understanding of advance directives.

SUBMITTER: Abadir PM

PROVIDER: S-EPMC3797145 | biostudies-literature | 2011 Dec

REPOSITORIES: biostudies-literature

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When doctors and daughters disagree: twenty-two days and two blinks of an eye.

Abadir Peter M PM Finucane Thomas E TE McNabney Matthew K MK

Journal of the American Geriatrics Society 20111108 12

A cornerstone of American medical ethics is the right to say, "Keep your hands off of me," to decline medical treatment. A central problem is how to decide about individuals who have become incapacitated and can no longer request or refuse potentially life-sustaining treatment. An advance directive is a formal attempt to protect people's right to autonomy when they are no longer autonomous. As such, it assumes that previously expressed wishes are precise and immutable, but many families make dec ...[more]

PMID: 22091827

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Project description:ObjectiveThe pathophysiology of Chronic Tic Disorders (CTDs), including Tourette Syndrome, remains poorly understood. The goal of this study was to compare neural activity and connectivity during a voluntary movement (VM) paradigm that involved cued eye blinks among children with and without CTDs. Using the precise temporal resolution of electroencephalography (EEG), we used the timing and location of cortical source resolved spectral power activation and connectivity to map component processes such as visual attention, cue detection, blink regulation and response monitoring. We hypothesized that neural activation and connectivity during the cued eye blink paradigm would be significantly different in regions typically associated with effortful control of eye blinks, such as frontal, premotor, parietal, and occipital cortices between children with and without CTD.MethodParticipants were 40 children (23 with CTD, 17 age-matched Healthy Control [HC]), between the ages of 8-12 (mean age = 9.5) years old. All participants underwent phenotypic assessment including diagnostic interviews, behavior rating scales and 128-channel EEG recording. Upon presentation of a cue every 3 s, children were instructed to make an exaggerated blink.ResultsBehaviorally, the groups did not differ in blink number, latency, or ERP amplitude. Within source resolved clusters located in left dorsolateral prefrontal cortex, posterior cingulate, and supplemental motor area, children with CTD exhibited higher gamma band spectral power relative to controls. In addition, significant diagnostic group differences in theta, alpha, and beta band power in inferior parietal cortex emerged. Spectral power differences were significantly associated with clinical characteristics such as tic severity and premonitory urge strength. After calculating dipole density for 76 anatomical regions, the CTD and HC groups had 70% overlap of top regions with the highest dipole density, suggesting that similar cortical networks were used across groups to carry out the VM. The CTD group exhibited significant information flow increase and dysregulation relative to the HC group, particularly from occipital to frontal regions.ConclusionChildren with CTD exhibit abnormally high levels of neural activation and dysregulated connectivity among networks used for regulation and effortful control of voluntary eye blinks.

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When doctors and daughters disagree: twenty-two days and two blinks of an eye.

Publications

When doctors and daughters disagree: twenty-two days and two blinks of an eye.

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