Where angels fear to tread: Proxy consent and novel technologies

Abstract

Background: Individuals suffering from severe disorders of consciousness (DOC) face a bleak prognosis and are susceptible to therapeutic neglect according to Fins. Because of the increasing occurrence of severe brain injury, some physicians and researchers take the study of DOC to be a moral imperative and perceive novel technologies, such as Deep Brain Stimulation (DBS), as offering potential therapeutic benefit.

Method: This article examines the decisional process faced by proxy decision-makers for patients with severe DOC when confronted by novel treatments such as DBS.

Results: If there is awareness in the literature that surrogate consent is complicated by the contingencies of severe brain injury such as disability and the possibility of long-term care, surrogate consent is often equated with substituted judgement and taking the best interests of the patient into account. However, for surrogates of patients with severe DOC, advocacy becomes a central component of the surrogate's role as there is no established standard of care for these patients in the post-acute phase. If participation in research is offered, the surrogate may perceive research participation as a way of providing benefits such as stimulation and some rehabilitation services for the patient.

Conclusion: Researchers need to be aware how the absence of a standard of care can shape surrogate choice.

• Proxy consent
• severe disorders of consciousness
• deep brain stimulation
• advocacy
• best interests

Notes

¹If the gulf that separates acute care for brain injuries from post-acute and rehabilitative care has always been present, the soldiers coming back from Iraq with severe head injuries have made this gap even more visible. In a short editorial, Drazen [10] highlights how better and more advanced care in the battlefield translates into lives saved which results in another problem: ‘how to provide the best long-term care for the survivors of these injuries’.

²It has brought relief to persons suffering from Parkinson's disease and movement disorders and has been used to treat depression [17].

³This would be the consequence of adopting the position taken by ‘[t]he American College of Physicians and other groups… that greater than minimal risk research offering subjects no reasonable prospect of direct benefit should be permitted only when authorized by a research advance directive or after review and approval at the national level, through a process resembling that set forth in the current regulations governing research involving children’ ([25], p. 25).