Neurotechnology-informed Shared Decision Making in Disorders of Consciousness (DoC): A Qualitative Study of Clinician and Family Perspectives
Twisha Bhardwaj1, Brian Edlow2, Michael Young1
1Center for Neurotechnology and Neurorecovery, Department of Neurology, Massachusetts General Hospital and Harvard Medical School, Boston, MA, USA, 2Center for Neurotechnology and Neurorecovery, Department of Neurology, Massachusetts General Hospital and Harvard Medical School, Boston, MA, USA; Athinoula A. Martinos Center for Biomedical Imaging, Massachusetts General Hospital, Charlestown, MA, USA
Objective:
To illuminate attitudes of clinicians and family members of patients toward the role of advanced neurotechnologies in DoC care conversations.
Background:
Patients with disorders of consciousness (DoC) lack decision making capacity. Their medical care spotlights a challenge for shared decision making as surrogate decision makers, often family members, must navigate the uncertainty of making care decisions on their behalf. This uncertainty is especially prominent in light of growing recognition of covert consciousness, attributable to advances in neurotechnologies that enable detection of sub-behavioral signatures of responsiveness and capacity for recovery. Prominent professional society guidelines now recommend the use of advanced neurotechnologies for some patients. Yet given a lack of concrete guidance for their integration into care, advanced neurotechnologies themselves introduce profound uncertainties to shared decision making.
Design/Methods:
Grounded theory and rapid qualitative analysis were employed to examine semi-structured interview data from 27 clinicians and 11 family members of patients with potential covert consciousness during three stages of conversation regarding the translation of advanced neurotechnologies into DoC care.
Results:
While clinicians described weighing clinical, prognostic, and logistical factors when deciding to introduce advanced testing to families, most family members regarded clinicians as ethically obligated to offer advanced neurotechnologies in assessing a patient with a DoC. There was near consensus among both stakeholders that results of advanced neurotechnologies must be shared with families, even in the context of their ongoing clinical investigation. The vast majority of both clinicians and family members posited that the results rendered by advanced neurotechnologies should be communicated in different ways based on the family’s understanding, background, receptiveness to information, and anticipated role in decision making.
Conclusions:
Harnessing these points of convergence and tension between clinicians and family throughout three stages of conversation, we develop a discussion guide that clinicians may use as a roadmap to support shared decision making in DoC care.
Disclaimer: Abstracts were not reviewed by Neurology® and do not reflect the views of Neurology® editors or staff.