Denial

A 60 year old woman suffers a massive stroke and is admitted to the intensive care unit. Her course follows a similar one to many patients with this degree of injury; it gets worse before it gets better. Initially, she is able to speak, even if her speech is garbled and difficult to understand. But over the next few days, despite interventions, her brain begins to swell. Her mental state declines to the point where she needs to be intubated to help her breathe.

Over the next two weeks, her family struggles to understand her illness. Her recovery is minimal at best. I cannot remove the breathing tube because she has periods of apnea - where she stops breathing - and has no reflexes to protect her airway. Her eyes open to voice, but she doesn't follow commands. Her stroke is devastating. The recovery for such an injury takes months. We start recommending a tracheostomy and feeding gastrostomy, surgeries that will aid her recovery.

Each day, I speak to the sister and daughter. They see small changes and think they are big changes. They remember when she first came in and could speak, and don't understand why she cannot do so now. They expect recovery within days.

The denial is fascinating and frustrating. They can explain that both I and the neurologist believe she will take months to improve and that she needs the tracheostomy and gastrostomy. They can repeat back everything I say. Yet immediately after they do so, they say, "But I disagree. I think she will get better soon. I think she's made huge improvements compared to yesterday. I thank you for the medical opinion, but I simply don't believe it."

I am sure other specialties or professions are trained to handle these conversations, but I felt woefully unprepared. How do you pass along information to help someone make an informed decision when they simply decline to believe it? What tools or strategies exist to help someone move beyond denial? I tried to engage them in many different ways; our physical therapists had them see how much assistance she needed, I printed out resources in their language, I asked for a "cultural ambassador" to see them. Yet all I could do was give them more time. Not all challenges in the critical care unit are medical in nature.

Image of intracerebral hemorrhage shown under Creative Commons Attribution Share-Alike License.