Extending patient-centred communication to non-speaking intellectually disabled persons.

Patient-centred communication is widely regarded as a best practice in contemporary medical care, both in terms of maximising health outcomes and respecting persons. However, not all patients communicate in ways that are easily understood by clinicians and other healthcare professionals. This is especially so for patients with non-speaking intellectual disabilities. We argue that assumptions about intellectual disability-including those in diagnostic criteria, providers' implicit attitudes and master narratives of disability-negatively affect communicative approaches towards intellectually disabled patients. Non-speaking intellectually disabled patients may also be taken to lack decision-making capacity and resultingly, may be given very little role in determining their care. But, given evidence of the heterogeneous communicative practices available to non-speaking patients, efforts should be made to extend patient-centred communication to them. We offer four suggestions for doing so: (1) treating those with non-speaking intellectual disabilities as potential communicators; (2) lengthening appointment times to develop relationships necessary for communication; (3) disentangling capacity from communication in concept and in practice; and (4) recognising the bidirectional connection between supported decision-making and patient-centred communication.

Two Practices to Improve Informed Consent for Intraoperative Brain Research.

As the clinical applications of neurologically implanted devices increase, so do opportunities for intracranial investigations in human patients. In some of these studies, patients participate in research during their awake brain surgery, performing additional tasks without the prospect of personal therapeutic benefit. These intraoperative studies raise persistent ethical challenges because they are conducted during a clinical intervention, in a clinical space, and often by the treating clinician. Whether intraoperative research necessitates innovative informed consent methods has become a pressing conversation. Familiar worries about inadequate participant understanding and undue influence dominate these discussions, as do calls for increasing information retention (e.g., using methods such as "teach-back") and minimizing enrollment pressures (e.g., preventing surgeons from consenting their own patients). However, efforts have yet to inspire widespread consent practices that mirror the scope of ethical concern. Focusing on awake, intraoperative intracranial research, we identify 2 underappreciated problems in approaches to informed consent. The first is epistemic: Many practices do not fully consider when and under which conditions participants are adequately informed. The second is relational: Many practices do not fully consider the effects of trust between patient-participants and surgeon-researchers. In exploring these concerns, we also raise questions about whether additional steps beyond preoperative consent may improve the process because decisions at this time are decoupled from both the experiences and vulnerability of awake brain surgery. Motivated by these considerations, we propose 2 practices: first, requiring a third-party patient advocate in initial consent and second, requiring verbal intraoperative reconsent before initiating research.

Disentangling Function from Benefit: Participant Perspectives from an Early Feasibility Trial for a Novel Visual Cortical Prosthesis.

Visual cortical prostheses (VCPs) have the potential to provide artificial vision for visually impaired persons. However, the nature and utility of this form of vision is not yet fully understood. Participants in the early feasibility trial for the Orion VCP were interviewed to gain insight into their experiences using artificial vision, their motivations for participation, as well as their expectations and assessments of risks and benefits. Analyzed using principles of grounded theory and an interpretive description approach, these interviews yielded six themes, including: the irreducibility of benefit to device functionality, mixed expectations for short-term device functionality and long-term technological advancement of visual prostheses, and a broad range of risks, concerns, and fears related to trial participation. We argue that these narratives motivate a nuanced set of ethical considerations related to the complex relationship between functionality and benefit, the intersection of user experience with disability justice, and the import of expectations and indirect risks on consent.

"They were already inside my head to begin with": Trust, Translational Misconception, and Intraoperative Brain Research.

Background: Patients undergoing invasive neurosurgical procedures offer researchers unique opportunities to study the brain. Deep brain stimulation patients, for example, may participate in research during the surgical implantation of the stimulator device. Although this research raises many ethical concerns, little attention has been paid to basic studies, which offer no therapeutic benefits, and the value of patient-participant perspectives.Methods: Semi-structured interviews were conducted with fourteen individuals across two studies who participated in basic intraoperative research during their deep brain stimulator surgery. Interviews explored interpretations of risks and benefits, enrollment motivations, and experiences of participating in awake brain research. Reflexive thematic analysis was conducted.Results: Seven themes were identified from participant narratives, including robust attitudes of trust, high valuations of basic science research, impacts of the surgical context, and mixed experiences of participation.Conclusion: We argue that these narratives raise the potential for a translational misconception and motivate intraoperative re-consent procedures.