This past week I met with a distraught mother and father at a long-term acute care facility in San Diego. Their 36-year-old only son had been hit by a car five weeks earlier and suffered severe brain injury. Then, he suffered a stroke.
He had a tracheostomy and a fixed stare. The prognosis was not good.
Mom and Dad were being asked to make a very important decision about whether or not they wanted cardiopulmonary resuscitation. The doctor wanted them to make it quickly. This is otherwise known as “code status.” Full code is where CPR is done and DNR (do not resuscitate) is where it is not. Determinations about feeding tubes and how aggressive to be with other life prolonging-sustaining procedures are greatly informed by this gateway decision. There was no advanced directive to guide them and as one would expect, they were overwhelmed and torn about the decision.
They desperately needed support from their attending physician but he had become impatient. He refused to spend more time with them discussing the ramifications of this huge decision. The parents told me there’d been a difference of opinion on the code status and the physician had actually walked out, as well as hung up the phone on them.
After this, they felt he was completely unavailable and there was no other support offered to this devastated couple as they faced the most important decision of their lives.
They went looking on the Internet for a care manager to help advocate for them and found me.
I met this family in their son’s room. My visit was well timed as their very young social worker walked in soon after I arrived. In the nicest way possible, I said to her that the parents wanted to talk about the code status. She gestured as if to say, “so talk” as she stood over the young man’s bed, expecting to have the conversation with them right there and then… in his presence.
I suggested a private room.
She immediately appeared worried and hurried out of the room saying she would be right back. She reappeared with a very hostile risk mitigation type who took us down the hall and into a conference room where we had an unnecessarily difficult meeting. Simply communicating that the decision was overwhelming to this couple and that they needed to meet with the medical team was somehow threatening to the facility representative.
After we got through the initial resistance, a request to speak with the neurologist was made and offers of assistance finally extended. In the end it was a helpful meeting, but it was hard on the family who had been completely dis-empowered in this situation.
This is precisely when a knowledgeable care manager and patient advocate is needed.
In this case, the medical providers had for some reason become defensive.This impasse left the family stranded in a life and death situation they did not understand. The family didn’t know what they needed or what the next step would be. I simply facilitated communication and things changed.
This week the family will meet with each of the physician’s involved to review the pros and cons of this complex situation.
People expect that this support and communication will automatically happen, and most of the time it does, but on occasion both people and systems fail. When they do, families need help navigating the disconnect between themselves and the system. With the physician and facility’s participation this family is now in the process of deciding what the best thing is for their son.
It didn’t happen easily but it’s happening. It’s what we would all want. Care managers and patient advocates are a critical support system for families in crisis. They can help you make sure that life is respected and your family is treated with the dignity they deserve.
