by Brian Wren, MSW '10
When I was in my second year of social work school, I was placed at a local Los Angeles hospital. In November 2009, I rotated onto the respiratory intensive care unit located in the brand new critical care tower. The ICUs in the tower were truly the peak of medical care: they had all of the best medical equipment money could buy, a roster of the best specialty doctors in the city, and a staff of nurses that was exquisitely trained in every aspect of care. All of which were stymied by a patient named Charles.
Charles was 27 years old, suffered from severe autism all of his life, and was mostly nonverbal. For the first 25 years of his life he was cared for by his single mother, who worked as a nurse at another hospital. About two years ago, his care became too much for her and she was forced to find a residential program for him. It was there in this residential facility, right around the time I was starting in the ICU, that Charles aspirated three coins.
He was rushed to my hospital where surgeons were able to remove the coins, but his lungs were swollen from the trauma and he had to be placed on a ventilator to help him breathe. After a week or two his condition improved greatly and it was time to get him off the vent. This was when the real trouble began. When a person has had machines breathing for them for an extended period, it is necessary to wean them back into breathing on their own. The process of weaning requires a person to be able to follow careful instructions from the nurse, which is where Charles was different. Since Charles had severe autism, as soon as the sedation was lowered and he woke up in this unfamiliar environment, he would become agitated. He was unable to follow instructions and made no progress in the weaning process. This went on for several weeks and his condition steadily worsened. It was beginning to look like he may never get off the vent.
The team tried every medical approach to the problem, which mostly included different drug combinations attempting to find a balance between unconsciousness and agitation. His condition continued to decline and the question of care became, “Where do you go in treatment once every medical protocol has been exhausted?” In the end, there seemed to be no answer, and it looked like Charles may not survive, so we decided to hold a family meeting to discuss end-of-life issues with the mother and discuss any “last ditch efforts” to save him.
Charles’ mother would be present, partially to help her come to grips with her son’s seemingly unavoidable fate and partially to show her we were doing everything that could possibly be done to help him. To help her cope with this dilemma, my supervisor asked her to tell us what Charles was like before he was sick. She told the team about his life outside the hospital, including his likes and dislikes. He liked eating, music, running, toe walking, deep touch and riding in the car. He disliked light touch, discordant noise and sitting still for long periods of time. Through the process of hearing about his life, we could feel a care plan emerging: if we could surround him with his likes and keep out his dislikes, maybe we could keep him calm without the medications. If we had to touch him, we had to make sure we strongly held him. We also brought on a CD player with his favorite songs, put a block of wood at the foot of his bed for him to press against and turned off the peeps and whistles of the machines in the room. Together, all of these techniques enabled the team to keep him calm when he was brought out of sedation. In the course of a week, he was completely off the vent.
In the end it was not the expensive equipment or the skilled team that saved Charles’ life, it was the 27 years of knowledge that a loving mother brought to the team that saved his life. If only we had tapped into that knowledge in the beginning and not as a “last-ditch effort,” Charles might have been saved weeks of suffering and the hospital saved the small fortune it took to keep him alive for those weeks. To me, this experience is essential to what we come to know as social workers. We believe that each person we meet is an expert in their own lives and the lives of their loved ones and that expertise should be respected and valued as much as the expertise of the most well-respected doctor, the most clinically effective social worker and the most exquisitely trained staff money can buy. Without the collaborative effort of the social relationships that each of our clients function within, our jobs would be impossible.