Decisionmaking Issues in the Rehabilitation Process

Abstract

Family members are widely believed to be the best decisionmakers for those with brain injuries, but the rehabilitation process does not in fact give them that authority. I have been teaching health care ethics at St. John's University in Jamaica, New York, since 1984. Although I have researched and written a great deal in the field of health care ethics, I had done no work in the area of traumatic brain injury, nor do I remember ever attending a professional conference where that topic was examined. I had never thought about traumatic brain injury as a distinct topic of medical ethics and certainly had not studied the topic in depth. All of that changed, however, as a of a phone call that my husband and I received on the Sunday evening of 22 February 1998. The caller was the trauma room doctor from Cook County Hospital in Chicago. He was calling to inform us that our twenty-one-year-old daughter, Michelle, a senior at the University of Chicago, had been hit by a car. She had suffered severe brain trauma and was on a ventilator. The staff was preparing for immediate brain surgery, and we were advised to go to Chicago as quickly as possible. We found out later that Michelle had arrived at the hospital as a three on the Glasgow Coma Scale and that there had been some discussion as to whether they should operate at all. Michelle survived the surgery and several surgeries after that. Because she had hydrocephalus, she needed to have a shunt implanted, but before that could be accomplished she had to recover from numerous external shunt infections. After eight weeks, she was released from the hospital, although still unconscious, and went to the Rehabilitation Institute of Chicago (RIC) to begin a rehabilitation program that included coma stimulation. During that time, she had two admissions to Northwestern University Hospital, one for pneumonia and another for a urinary tract infection. During both admissions, she also underwent surgery to correct problems with her shunt. On 10 June 1998, Michelle and I flew to Newark Airport and from there went to Edison, New Jersey, where Michelle entered the rehabilitation and coma stimulation program at JFK Johnson Hospital. She was still unconscious. In July of 1998, we were informed that she was no longer a candidate for their program. We were able to have her transferred to the extended-care program at JFK, where she continued to receive therapy. Around the beginning of October, a little over seven months after the initial injury, Michelle began to emerge from the vegetative state and therapy began in earnest, but after several months, it was determined that she had plateaued and that any more progress was unlikely. In June of 1999, we moved Michelle to a brain injury unit on Long Island, but again Michelle was discharged because she was not making sufficient progress. In November of 1999, we brought Michelle home to live with us, where she receives twenty-four hour nursing care and daily therapy. Our only other option would have been to place her in a nursing home. For nearly two years, I have been by my daughter's bedside at some of the best rehabilitation centers in the country. During this time, I have met many other families of people with head injuries as well as some of the most renowned physicians in the field of head injury. This experience, and my professional background, put me in a unique position to describe the issues that families must address in the decisionmaking process of rehabilitation. And although every case is different, my own family's story suggests that there are severe problems with the process. It is widely accepted that family members should have decisionmaking authority for their brain-injured loved ones, but the rehabilitation process of brain-injured individuals does not in fact give them that authority. Two caveats before I begin: First, although much of my analysis is critical of the rehabilitation process, I wish to stress that I am extremely grateful to the many health care professionals who have worked with my daughter and my family. …