As we listen to stories of brain injury patients and their caregivers, one of the most resounding conflicts with the healthcare system today is gaps in communication between patients and health care providers. This mostly takes two forms: the inability to access information surrounding their illness or if accessed, the inability to understand the given information.

Brain injury undeniably changes the lives of patients and their caregivers. While these changes are a challenge in itself; new routines, new physical and mental disabilities, new dependency etc, they become more difficult to navigate with a lack of information that facilitates proper transitional care and reassimilation into a new “normal.” One caregiver at a BIANC support group shared, “I didn’t even know the process of caring for my husband’s feeding tube. I wish someone would have walked through it step by step with me. It’s the simple, basic things.” Another brain injury patient shared “I wish I knew what was going on with my brain. Things that I could do easily – write, read – I can’t do anymore. Things that I never did, I now do.”

It is a known fact that education is an effective tool of empowerment. Hence, in its absence,  most caregivers and patients can develop a sense of helplessness and hopelessness when dealing with such challenging health circumstances and a new aspect of identity. This creates an environment conducive to stress for both parties and extends the period of time in which individuals can reclaim a sense of normalcy, stolen from them by the dynamic nature of brain injury.

In some cases, patients and caregivers do receive information from health care providers but it is frequently conveyed as a string of technical medical jargon that is difficult for them to be understood. Several patients shared that their lack of knowledge of medicine created a barrier for them when trying to communicate with their provider and often resulted in feelings of confusion and frustration. One veteran who has a son who suffered from brain injury and is also a brain injury patient himself shared, “ I had to say to the doctor  “Stop. Slow down…In language that I can understand please. This is my son. I need to know what’s going on so I can tell my family.””

This barrier to communication can be interpreted by the patient and their families as an authoritative approach on the part of the health care provider. They may feel as though they do not have any power to advocate for themselves with regards to care given that they do not have as much knowledge as the provider and cannot understand. It closely resembles the paternal model of patient-provider relationship which has historically been argued against. It is therefore important for patients and families to play an active role in their care, which begins with their understanding of the health circumstances in its entirety so they can make well-informed decisions. This is aligned to the deliberative model of care wherein the aim of the provider is to simplify their knowledge of the illness to help patients with these decisions that shape their life.

While we empathize greatly with brain injury patients and their experiences, we also understand that health care providers are not solely to blame. There are many other factors that can be attributed to these difficulties including fifteen-minute appointment times, insurance coverage limitations, and also the acute nature of brain injury that does not always allow for the prioritization of extensive communication over saving the patient’s lives. These issues must be targeted in a multidisciplinary approach especially centered around health policy, which will take time to be addressed and corrected.

However, in the interim, we ask health care providers to understand that while treating these diseases have become routine to their daily lives, it is a definitive moment in the life of a patient and their family. It may be a mere fifteen-minute consultation, a routine surgery or procedure, a weekly check-up or another daily email for a healthcare provider, but for a patient and their family, it is a fear-filled trajectory of navigating a new normal. In light of seeing them in their vulnerability, it is a call to move beyond efficiently checking the boxes off a daily task list, but being present, understanding their need and serving them, even if it just means using a word with less syllables.

Author:           Shernice Martin

Reviewed by: Neha Vutakuri

(Adapted from conversations held with the Brain Injury Association of North Carolina Patient Support Groups)