This is a part of podcast series from the Model Systems Knowledge Translation Center on Disorders of Consciousness. Dr. Brian Edlow explains how families and clinicians work together to make decisions about life‑sustaining treatment for people with disorders of consciousness. 

Our guiding principle in the intensive care unit, when we speak with families about what their loved one's goals of care should be, is what that person would want if they could speak to us right now. We don't want families to feel like the burden is on them to make a decision. The goal is to see this decision through the lens of the patient from their perspective. Have they told their family members what they would want in this situation? Have they written down their wishes in an advanced directive? We try to learn as much as possible about each patient's goals, their wishes, the type of life that would be acceptable to them. And when we understand what a patient would want, we work with the family to ensure that the care we're providing is consistent with what the patient would've wanted.

I never give my personal advice about what to do because it's really not about my opinion, and it's not even about the family's opinion of what they would want. Our guiding principle is what that patient would want, respecting that individual's autonomy and trying to understand what their wishes would be if they could speak to us. What that means is listening to stories about what made the patient's life meaningful to them. Trying to understand if they ever verbally communicated to their family what their wishes might be in a situation like this, or did they ever write those wishes down in an advanced directive.  

We try to learn about our patient's perspectives from every possible angle so that together, in partnership with the family, we can make the most informed decision about whether they would want to continue aggressive life sustaining therapy or for some patients, if even the best case scenario for a long-term recovery involves a quality of life that would be unacceptable to them, then should we transition to comfort focused care and allow that patient to pass away peacefully in the ICU. There are some patients for whom that might be the right course of action based on what their family understands they would want.  

But it is incumbent upon us as clinicians to ensure that the families have a clear picture about what the future might hold. And usually that picture is filled with uncertainty. We need to be humble and to acknowledge our inability to accurately predict outcomes early on in the ICU, and particularly when we're talking about traumatic brain injury in a young patient. The range of outcomes can be quite broad. That uncertainty can sometimes cause anxiety as families try to understand what their loved one's life would look like at the best end of the spectrum versus the worst case scenario. And I acknowledge to families when we're having these conversations the anxiety that the uncertainty might produce. But I would rather give them an honest and transparent appraisal of what the future might hold, one that is filled with caution and humility, than give them a false sense of security when we really don't have accurate models yet to predict how much somebody's going to recover.

Visit https://msktc.org/tbi and get the answers you need from experts who conduct innovative and high-quality research, provide patient care, and work to improve the health and overall quality of life for people with traumatic brain injury. That’s https://msktc.org/tbi.