Nobody likes to deliver bad news, including doctors. When the diagnosis is paralysis, there has been a long history of keeping patients in the dark for fear that knowing the facts will cause patients to give up hope for a fulfilling life. Current medical ethics dictate that patients and families be told the truth. Today, the questions focus on how and when to deliver the bad news–and on how much patients really hear and understand.
Thea Flaum, founder of FacingDisability.com has conducted on-camera interviews of almost 100 people with spinal cord injuries and members of their families. And when she asked people,” How did you develop an understanding of the injury?” she discovered – regardless of how and when the prognosis was delivered – people only “got” the news when they were ready to hear it. “What’s more,” Flaum says, “ no matter how wrenching, how anguished, how great their resistance to hearing the news – no matter how clumsily or carelessly the bad news was delivered – it did not seem to affect how they coped with their injuries or the way they lead their post-injury lives.”
Marie, who was injured in 1998 at the age of 22, and has quadriplegia said, “Denial is a great thing. I knew in the back of my head what I was dealing with, but there was also that hopeful piece. Maybe the injury isn’t quite as permanent as they’re saying. But that came gradually. I was being practical and planning, and trudging forward, and doing my therapy, but not completely losing hope that I would regain some movement.” Today, Marie coordinates the SCI mentoring program at a major rehabilitation hospital.
Nick, paralyzed with paraplegia in 1998 at the age of 17, heard the news right away: “Right after I awoke from surgery – and my mother was right by my side – the doctors came in and just bluntly told me that I was paralyzed and that I’d never walk again…that it’d be physically impossible to walk again. And I was devastated and I began to hate who I was.” Today, Nick is a competitive bodybuilder, wheelchair dancer, and successful motivational speaker.
Flaum’s article and other comments about prognosis after spinal cord injury were published in the journal of the American Academy of Physical Medicine and Rehabilitation issue of January, 2017.
How did your family take the news of paralysis once it was given? Please feel free to leave a comment.