My sister Debbie loved horses—a passion that emerged early and shaped her entire life. She was a rider, and a teacher of riding. She loved to compete in horse shows and to coach her students. She raised and trained horses, giving them tender, loving care. Our mother liked to say that she wanted to come back in her second life as Debbie's horse.
At age fifty, Debbie nearly died in the saddle—more precisely, from being thrown from the saddle. In early September 2006, during an equestrian event, the horse she was riding failed to clear a jump. Landing on the ground, knocked unconscious and breathless from the impact, Debbie would have died had EMTs not been on the scene. After being flown by helicopter to a university hospital, Debbie awoke to the reality of a horse lover's worst nightmare—paralyzed from the neck down and tethered to a mechanical ventilator. She had suffered a high-level spinal cord injury similar to the one experienced by Christopher Reeve.
One of Debbie's friends telephoned me to report the news. A few hours later, I got a call from a physician at the hospital requesting consent for a spinal fusion operation. I was "consented," but I was in no position to give informed consent.
Modern technology has greatly expanded our ability to preserve life in the face of catastrophic illness or injury—a major impetus for the emergence of bioethics. Is this a blessing or a curse? Such technological innovation brings expanded opportunity, but also the necessity to face the prospect of life with profound disability. At the time, and nearly until the end of the Debbie's life, I felt convinced that it would have been better for her and for those who cared for her had she died from the accident. Now, I'm not so sure.
As I hurriedly made arrangements to travel to the hospital in Lexington, Kentucky, I recalled an article I had read in the New England Journal of Medicine in the early 1990s on endof life decisions for ventilator-dependent quadriplegics. I located it in my files and took it to read on the plane ride. I remembered that the authors had recommended waiting at least two years before deciding to stop treatment in order to allow ample time for rehabilitation and adjustment to a drastically altered life. For despite the profound disability and total dependence on others, most people in this situation find their lives worth living. Although the two-year mark is arbitrary, the principle behind it is sound. Nevertheless, I felt it to be my mission as brother-bioethicist to make sure that Debbie knew that she had a choice of whether to live or die—that she could stop the ventilator either in the hospital or at a later time. She decided that she wanted to live, but agreed to my recommendation to execute an advance directive stipulating withdrawal of treatment should she become incompetent with no prospect of regaining mental capacity. I did not broach the topic of stopping treatment again.
After a long stay in the intensive care unit, a bed finally became available in a distinguished rehabilitation hospital. During her hospitalizations, my mother and I both advocated for Debbie to return to the Washington, D.C., area, where we lived. How could she get the competent help she needed for daily living on her Kentucky farm—in "the middle of nowhere," as it seemed to us? Debbie insisted, however, on returning to her farm, under the care of her long-term partner Mike, who received training at the rehab hospital, and with hired help. In January of 2007, Mike drove her back to Kentucky in a newly purchased, wheelchair-accessible van. I thought it was crazy, but I was proven wrong.
I traveled with my mother to visit Debbie on her farm in April 2007. She seemed happy to be home, and I was impressed with her adjustment. Christopher Reeve titled his autobiography Still Me. I thought of my sister as still Debbie, despite being unable to move her body below the neck. Yet...