Ethical, Palliative, and Policy Considerations in Disorders of Consciousness.

This essay complements the scientific and practice scope of the American Academy of Neurology Guideline on Disorders of Consciousness by providing a discussion of the ethical, palliative, and policy aspects of the management of this group of patients. We endorse the renaming of "permanent" vegetative state to "chronic" vegetative state given the increased frequency of reports of late improvements but suggest that further refinement of this class of patients is necessary to distinguish late recoveries from patients who were misdiagnosed or in cognitive-motor dissociation. Additional nosologic clarity and prognostic refinement is necessary to preclude overestimation of low probability events. We argue that the new descriptor "unaware wakefulness syndrome" is no clearer than "vegetative state" in expressing the mismatch between apparent behavioral unawareness when patients have covert consciousness or cognitive motor dissociation. We advocate routine universal pain precautions as an important element of neuropalliative care for these patients given the risk of covert consciousness. In medical decision-making, we endorse the use of advance directives and the importance of clear and understandable communication with surrogates. We show the value of incorporating a learning health care system so as to promote therapeutic innovation. We support the Guideline's high standard for rehabilitation for these patients but note that those systems of care are neither widely available nor affordable. Finally, we applaud the Guideline authors for this outstanding exemplar of engaged scholarship in the service of a frequently neglected group of brain-injured patients.

Ethical, palliative, and policy considerations in disorders of consciousness.

This essay complements the scientific and practice scope of the American Academy of Neurology Guideline on Disorders of Consciousness by providing a discussion of the ethical, palliative, and policy aspects of the management of this group of patients. We endorse the renaming of "permanent" vegetative state to "chronic" vegetative state given the increased frequency of reports of late improvements but suggest that further refinement of this class of patients is necessary to distinguish late recoveries from patients who were misdiagnosed or in cognitive-motor dissociation. Additional nosologic clarity and prognostic refinement is necessary to preclude overestimation of low probability events. We argue that the new descriptor "unaware wakefulness syndrome" is no clearer than "vegetative state" in expressing the mismatch between apparent behavioral unawareness when patients have covert consciousness or cognitive motor dissociation. We advocate routine universal pain precautions as an important element of neuropalliative care for these patients given the risk of covert consciousness. In medical decision-making, we endorse the use of advance directives and the importance of clear and understandable communication with surrogates. We show the value of incorporating a learning health care system so as to promote therapeutic innovation. We support the Guideline's high standard for rehabilitation for these patients but note that those systems of care are neither widely available nor affordable. Finally, we applaud the Guideline authors for this outstanding exemplar of engaged scholarship in the service of a frequently neglected group of brain-injured patients.

Ethical issues in the treatment of severe brain injury: the impact of new technologies.

Technological developments in functional neuroimaging have important ethical implications for the care of brain-injured patients. Patterns of fMRI and PET responses to stimuli may help clarify if a patient is utterly unaware, and thereby enhance a physician's confidence in reaching an accurate diagnosis of vegetative state or minimally conscious state. The analysis of similar responses may enhance a physician's confidence in pronouncing an accurate prognosis for functional recovery and help avoid committing the fallacy of the self-fulfilling prophesy. Surrogate decision making is necessary to secure consent for treatment decision in brain-injured patients and should attempt to reproduce the treatment decision the patient would have made. Physicians should manage irreducible clinical uncertainty by sharing their level of certainty of diagnosis and prognosis with the surrogate decision-maker. Shared decision making between the physician and surrogate is the current formulation of the doctrine of informed consent. Advance care planning can help inform surrogate decision making, but is available less commonly among young, previously healthy brain-injured patients. Functional neuroimaging technologies also impact on ethical issues of treatment, rehabilitation, and palliation. Families of brain-injured patients should be compassionately counseled that, despite provocative and highly publicized case reports, these technologies, while promising, are currently investigational and have not been sufficiently validated yet to be available for routine clinical use.

Patient-centered informed consent in surgical practice.

OBJECTIVES: To review the medical, ethical, and legal basis of the doctrine of informed consent for surgery and its complications, particularly for an incapacitated patient who requires a surrogate decision maker; to discuss the elasticity of the consent doctrine, whether surgical consent encompasses consent for surgical complications, and emphasize the importance of communication and shared decision making in the context of the patient-surgeon relationship; and to discuss patient and surrogate refusal of treatment, standards of surrogate decision making, barriers to effective communication, the role of the hospital ethics committee in resolving disputes over treatment, and how to reconceptualize surgical consent in the context of patient-centered medicine. DATA SOURCES: We reviewed PubMed citations for informed consent in surgery, patient-physician communication, shared decision making, patient-centered medicine, and consent guidelines published by specialty societies, particularly the American College of Surgeons and the Society for Critical Care Medicine. STUDY SELECTION: We selected articles in which issues of consent for surgical treatment were discussed or measured. DATA EXTRACTION: We extracted data relevant to questions of consent in surgical practice. DATA SYNTHESIS: We studied qualitative aspects of the consent doctrine. CONCLUSIONS: Surgical consent is not an event or a signature on a form but is an ongoing process of communication that continues throughout preoperative, perioperative, and postoperative care. In the context of patient-centered medicine, consent is best conceptualized as shared decision making with patients or their surrogates.

Ethical issues in the perioperative management of neurologic patients.

The perioperative care of patients who have diseases of the nervous system provides the setting for challenging ethical issues. In the preoperative period, these issues include obtaining informed consent for surgery and its complications, surrogate decision making for the neurologically incapacitated patient, the use of advance directives for medical care, and the temporary suspension of do-not-resuscitate orders during the perioperative period. During postoperative care, ethical issues include establishing and communicating prognosis in patients who are brain damaged, a trial of therapy when prognosis remains uncertain, surrogate consent and refusal of life-sustaining therapy in the neurologically impaired patient, and the management of brain death.