Giving My Uninformed Consent to Die.

This article was written by Paul Tobin, the President of the United Spinal Association, and titled: Giving My Uninformed Consent to Die. The article concerns the death of Tim Bowers who died on November 3, 2013 after his ventilator was withdrawn, soon after an accident.

Paul Tobin

By Paul Tobin

Yesterday, I read with horror the account of Tim Bowers, who at the age of 32 and surrounded by grieving family and friends, gave his uninformed consent to be removed from life support following a high-level spinal cord injury. Why was I horrified? Mr. Bowers and his family devalued his very existence in light of a significant, life-altering disability. Why was it uninformed? Simply because so little is known about how Mr. Bowers may have been able to survive and thrive if he was given more time.

At the lowest point in his life, surrounded by family members grieving the loss of the person he was, he was awakened from a coma, removed from ventilator support and given the opportunity to exit this world without ever knowing the person that he could become after the injury. Many people, including Mr. Bowers family, will argue that he didn’t want to live as a ventilator-dependent quadriplegic. Having been a quadriplegic for the past twenty years – albeit without need for a ventilator – and as the President of an organization representing 40,000 people with spinal cord injuries and disorders, their families and caregivers, I contend that nobody, including Mr. Bowers physicians, could tell what his ultimate condition would be.

In 1993, I shared the views ascribed to Mr. Bowers by his family that he wouldn’t want to live as a quadriplegic. I held that view right up until to moment that I heard my neck break and felt my body go limp; lying face down in the surf, cognizant of what had happened, I wanted to live. I was grateful to be pulled from the surf and given the opportunity to live. Over the next few days, I remember coming in and out of consciousness. I was completely paralyzed below the shoulders (and would remain so for the next few months). My wife was pregnant; my job was gone; my house was inaccessible; my car couldn’t be modified; everything, every plan, every aspiration seemed to have slipped away. My feelings of being a burden to my family set in – as they may have with Mr. Bowers. They would be better off without me. I love them too much to do this to them. I can’t live this way. If given the opportunity at various points after my injury to relieve my family of the burden, or out of my own sense of loss or despair, I might have taken up the offer.

What a life I would have missed if I had been asked to end it all at the wrong time.

I hope that I am not minimizing the pain and suffering that the Bowers family feels, or adding to their grief. That is truly not my intention.

My friend John Kelly

I do however question a medical community that looked upon, and reinforced the notion that Mr. Bowers was broken and unrepairable. With today’s technologies and advances, Mr. Bowers may have been able to breathe without the need for a ventilator and be independent once again. The truth is that we’ll never know because a grieving family and medical team asked a frightened man to make a decision when he was at his most vulnerable state, without the benefit of time and counseling that would be provided to almost any other patient.

We counsel suicidal people and people with life-threatening illnesses. We fight for the rights of unborn children. We’ll rally to the call for an animal that needs surgery. But if you’re paralyzed and won’t be able to walk or breathe on your own, watch out. At the most vulnerable time in your life, your doctor may ask you if he or she can throw the switch.

Paul J. Tobin
President & CEO
United Spinal Association