Virtual Mentor. August 2004, Volume 6, Number 8.
From the Editor
Thinking About Ethical Issues in Neurology
The theme editor introduces a special issue examining the ethical issues associated with the neurology specialty.
No medical specialty addresses fundamental ethical issues more frequently than does neurology. The reason is simple: the brain is so basic to human identity that even the language of transplants must be stood on its head when we talk about it—for who could argue that a "brain transplant" could be anything but a misnomer? If we ever did manage to take Charlie's brain and put it in Billy's head, would we claim that the resulting person was Billy, just because he looked like him, rather than Charlie, whose brain would then be running the show? When something happens that fundamentally changes the way the brain works—stroke, trauma, medication, disease—what does that do to the person whose identity is largely defined by that brain? And when we as clinicians intervene, what are our obligations when we explore the possibilities? What if we do the same to someone who isn't even sick? What intriguing, dangerous territory.
Each of the topics in the present issue of Virtual Mentor presents a dilemma that links it, directly or indirectly, to each of the others. Devastating brain damage evokes obligations of understanding and communication of facts and uncertainties that simply must be navigated for clinical decisions to be properly shared and made. If Eisenberg and Junge describe the legal consequences when such communication fails at the end of life, Truog goes on to challenge the very definition of death by neurological criteria altogether. How fascinating that he suggests that allowing families to permit lethal organ procurement before spontaneous death—effectively killing the donor for the purpose of procuring his organs—would "uncouple" the ethics of organ donation from the question of the determination of death. And how strange that he would describe the consequent main disadvantage as its necessitating a complete restructuring of "our ethical and legal approach to organ donation" rather than our ethical, legal, and clinical approach to euthanasia, assisted suicide, withdrawal of life-prolonging therapy, and most everything else we do as physicians.
Johnston's and Bascom's elegant discussions of patient-physician communication in physician-assisted suicide reminds me of a story I heard from Balfour Mount, the Montreal urologist who brought hospice to North America in the early 1970s in Montreal. While training at St Christopher's Hospice, he said, Cicely Saunders told him, "A bedpan thrown at you is not to be reacted to; it is to be interpreted." Would our interpretation of and response to requests for assisted death be altered fundamentally if organs might then be conveniently harvested? When Taylor discusses prognosis, uncertainty, and the importance of effective communication to establish goals of care consonant with the values of the neurologically devastated patient, it should be only too obvious that such communication might be fundamentally altered if the option of organ procurement became one component of at least one treatment option.
And so it goes with the minimally conscious and the vegetative, the latter of whom Cranford distinguishes from the minimally conscious by "the ability to visually track...in a consistent, sustained, and reproducible fashion"—defined further, oddly, rather like the obverse of Louis Armstrong's definition of jazz: "it is usually readily apparent to anyone seeing the patient." Why, then, do so many families refuse to accept what they see? And would the option of organ donation from those in a persistent vegetative state—whether "dead" by higher brain formulations, or merely "uncoupled" from the definition of death altogether—make things better or worse, easier or more difficult? Witness Lagay's discussion of our struggle over organ donation with anencephalic newborns whose higher brain is not permanently nonfunctional but altogether absent.
So what is the neurologist's job, after all? Garland's discussion of chronic pain treatment, devoid of ethical argument, devoted exclusively to case management, is oddly if starkly appropriate. We should attach no greater stigma to appropriate treatment of pain, with or without opioids, than to treatment of any other disorder: complete history, exam, treatment plan according to realistic, agreed-upon goals. Period. Green's discussion of the promise, pitfalls, and risks of presymptomatic testing for degenerative diseases whose course cannot be significantly modified by existing treatment raises the bar for communication. For how many workaday neurologists are equipped to provide the kind of counseling and support needed to permit both truly informed decisions regarding the tests and adequate management of their aftermath? (Need we return to the previous paragraph to imagine how the conversation might be influenced by lethal organ donation?) Who is to train us, and how?
In "Cosmetic Neurology," Chatterjee challenges the easy distinction between therapy and enhancement and then describes the societal forces that make the proliferation of neuro-enhancements inevitable. Asking where physicians will fit into this market, like it or not, he poses a series of provocative questions that challenge us to question our own sincerity if we simply recoil at this possibility.
Farah's "Neuroethics" and Schwab's review of articles by Farah and Wolpe contain the most grist for the bioethicist's mill. Matters like mind and body, personhood, social equity, free will and determinism bubble rapidly to the surface in any discussion of "the myriad ways in which...neuroscience intersect[s] with social and ethical issues." Is the neuroethics discussed here the same as the ethics of neurology? Important, basic questions are begged in such brief discussions, but certainly must be hovering nearby. It is interesting that neurology textbooks are often called textbooks of clinical neuroscience and that neurology/neurosurgery units in hospitals are often named "neuroscience" units, despite not one iota of research or formal study being associated with them. So many questions of identity, yet unasked. Are we physicians, whose specialty is the treatment of persons with neurological disease, clinical neuroscientists, dispassionate students of the nervous system; or are we neurological engineers, who apply the fruits of the neuroscientists' labor?
Students, neurologists, neuroscientists: read on.
James Gordon, MD, FRCPC
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