Terminally Ill but not Actively Dying - A War of Words

This phrase “terminally ill but not actively dying” was first introduced to us in the spring of 2013.  Although we were veteran special needs parents having ten years of experience with a terminally ill child, this phrase kicked off a new chapter. 

We had already made numerous life and death decisions regarding Willy, and although his original life expectancy was only two years (he was 9 at this point,) he was actually doing very well. We had just made it through a nasty three-year bout of pneumonia that kept coming back and landed us in the hospital so often it began to feel like we lived there. 

We had recently moved back to Ann Arbor and things were going well – considering, but Willy had been having some increased breathing and swallowing issues due to the regressive nature of his primary disorder – lissencephaly. 

My then husband and I met with Dr. Charles Koopmann, a pediatric otolaryngologist with the University of Michigan Health System, in order to discuss some options for Willy.  The options that were presented to us for improved breathing and swallowing were not good. All of them required some form of complicated surgery.  The only real viable option for us was a tracheostomy which, on one hand would have made life a little easier, and on another hand would have seriously increased the complication factor.

http://www.hopkinsmedicine.org/tracheostomy/about/what.html

For several reasons that I won’t go into here, we decided against the trach.  That night when we got home, I couldn’t help but think that it was the “beginning of the end.”  There were no more procedures or life-saving surgeries that were options.  It became a situation where we would just use what we had to keep him comfortable. 

Snuggling after a day of tough decisions, Spring 2013

And this is where it gets hard to wrap my head around.  People ask, “How is will doing?” and the quandary is this: what exactly do I say?  I mean, he’s doing well, but that is relative and highly contextualized. 

The reality is he’s not doing well: he has a terminal brain disorder.  He has a regressive condition that will prematurely end his life and we have to work like crazy just to keep him doing relatively well. It’s like this big caveat that hangs in a word bubble above our heads. 

I feel like a robot when I answer these well-intentioned questions. “He’s doing well considering he’s terminally ill but not actively dying.”  I don’t know why I feel the need to put it that way; most people who inquire already know he’s terminally ill.  It’s almost like I need to kick myself out of that complacency that comes around when he’s having a “healthy” period. 

Sometimes I forget he’s terminal and as long as we’re not in the hospital or dealing with extra issues, he’s just his version of normal.  Or until we need a new piece of equipment that insurance denies and I have to go back into the ring.

Thanks to the Affordable Care Act, we can take advantage of pediatric hospice care even though Willy is not “actively dying.”  There is some concurrent coverage afforded to us for which we are very grateful. 

It’s a strange dichotomy.  The normal use of the term "hospice service" brings to mind elderly folks who are literally in their last few weeks of life.  When we first placed Willy in hospice it was honestly very difficult just to say we did it.  It’s like we had given up on him.  But the reality is that Willy has a disorder subjecting him to a long, slow death. 

I don’t mean to dramatize it.  He has had and will continue to have the best life we can give him.  He’s normally a very happy boy and is surrounded by love.

Willy riding a bike with his therapist at school

But the nature of such disorders is that they are, in fact, terminal. Willy’s lifespan will be shortened by this condition even if right now he’s doing relatively well. And with good clinicians, hard work, lots of therapies, fabulous OT’s and PT’s, and a lot of luck, kids like Willy can live much longer than two years. Willy already has.

And there’s the rub. “Terminally ill but not actively dying” – or maybe it should be “terminally ill and actively dying forever.”

Because he’s forever actively dying. But then, aren’t we all?

Willy and Mom 21 February 2015