Disrupting the Cycle of Medical Distrust Between Caregivers and the Health Care System For Persons Living With Serious Mental Illness: What Does Misinformation Have To Do With It?

Developing transition planning for youth living with severe and persistent mental illness requires the creation, memorialization, and retrieval of appropriate and responsive treatment preferences to meet their needs, especially during a mental health crisis. Regrettably, transition-aged youth at the age of 18 can no longer rely on their support persons (typically family caregivers) to consent to care during a mental health crisis. Due to this, caregivers expressed challenges conveying information about their loved one’s preferences for care (Lavoie, 2018) during a crisis. This lack of access to patient information exchange during a mental health crisis can effect treatment decisions. Caregivers report a range of negative outcomes including traumatic events resulting in distrust of the health care system (Lester et al., 2005). While misinformation is typically thought of as the deliberate falsification of information, we explore misinformation as both omission and lack of access to patient information, in this case health information. But what happens when a caregiver is distrustful of the health care system? What influence does distrust have on disclosure of health information? The purpose of this paper is to understand how caregivers trust of the healthcare system effects their decision regarding the sharing of health information on behalf of a person experiencing a mental health crisis. Using a mixed methods approach, this paper provides the results of Texas wide online survey regarding disclosure of healthcare information during a mental health crisis. This study expands the understanding of misinformation and the consequence of when information is withheld from individuals and healthcare systems, that can result in clinical decisions based on misinformation. The data provides preliminary evidence to suggest that the role of distrust of the medical system plays a part of the decision to not disclose health information. Open ended responses also suggest a relationship of how lack of information can lead to misinformed decisions. Practical recommendations call for applications in which capacitated persons living with serious mental illness and their caregivers collaborate on the sharing and memorialization using a psychiatric advance directive (PAD). A psychiatric advance directive (PAD) is not only a communication tool it is a medical-legal document that promotes patients’ autonomy giving capacitated adults living with serious mental illnesses the ability to record their preferences for care during a mental health crisis (Table et al., 2020).