Friday, August 3, 2012

A Life Worth Living

If you have ever had a ‘Do Not Resuscitate’ order (aka: a DNR) shoved in your face, you know that it is an experience you are unlikely to forget.  If the DNR form in question concerns your child, well, let me tell you, that goes double.  I’ve had the awful experience three different times for My Mighty Z, and I remember each and every time vividly. 

My husband and I were first presented with a DNR when Mighty Z was 3-months old.    It happened again when she was 6-months old, and it happened last when she was 1- year old.   The doctors who presented us with those DNR forms all pretty much said that she would have no quality of life and that we were young and could have more children. They said that they could make her comfortable so wouldn’t suffer.  The doctor who recommended this course when Mighty Z was 6-months old didn’t stop there, though.  Instead, in order to show us what the rest of her life would be like, he set up and accompanied us on a visit a bedridden 17-year old kid in state foster care who was living in unquestionably horrific conditions.  Even though that poor boy suffered from a different disease than our Mighty Z and was born to a family that was unable (or unwilling?) to care for him, the doctor assured us that that was what we and Mighty Z had to look forward to, so it would be easier to just let her slip away.

Really???  Not so much, Doc.   I was horrified and offended that those doctors would even suggest a DNR because it has never been evident to me that Mighty Z’s was headed for a life not worth living.  That being the case, I have never signed any form that would relieve her physicians from the necessity of saving Mighty Z’s life.

I am sure many reading this blog have also at one time or another been presented with a DNR, as it seems many doctors gravitate to a DNR and try to lead families of medically complex children down that path.   In my opinion, they often do so because it is an easy ‘get out of jail’ card for them.  Looking back on my own experiences and the anecdotal evidence of my friend’s stories (some of whom are facing the issue right now) I am shocked that doctors still bring the subject up and recommend this course so regularly. 

My cousin was recently offered a DNR concerning her child who has Transverse Myelitis, and she asked me when was the right time to sign it.  Here is my answer:
“There is no answer.”  The decision to sign a DNR is a very hard choice to make, and only the family involved can determine whether or not it is the right course for their child, so only they know when the time is right to sign a DNR.  I don't think it is something you can plan for – I think that when it happens it happens. 

We have to support and respect each other’s journey.  I know many children who have made an impact on the world around them simply because their parents would not sign a DNR.  I also know several wonderful mothers who when faced with a DNR, signed it.  Who was right? Who was wrong?   The answer is that they all were right, as only the families involved knew when the time was right to let their child go. 

As for me, I’m so glad I didn’t sign a DNR concerning Mighty Z when I wasn’t sure it was right.  As you can see for yourself, Mighty Z’s is still a life well worth living:  

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  1. The DNR was not standard practice when we had my son and were dealing daily and for years with emergencies. It is odd to think we have come so far and successfully without such a thing but my younger peers (CCHS families) now have to face this DNR "trend". I have just gotten a taste of DNRs these last 3 years, every turn I make, caring now for elderly in-laws (90s). Again - NO I do not want a DNR. Call 911, get the person in the hands of trained professionals and then when we know what is happening we can discuss options. No lousy orange paper is going to be placed in our homes for any random person walking by to make a random orange piece of paper decision. After 23 years I am well informed this is not the way to go ----at least for us. This blog is well worth reading!!!! Kudos, Jan

  2. I think the incidence of this type of thing is increasing. In my opinion, there is less and less restraint to keep doctors from offering, and even insisting on the DNR orders. And with socialized medicine, there will be positive incentives for reducing the "burden on the system". Lately I have heard the term, "Futility of Care" policy or protocol, which at our local children's hospital is an internal policy, the details of which are not shared with parents. We have a severely disabled child ourselves, and also are connected with families in similar situations... we have heard too many stories. I think it is best to make those connections with other families for support in everyday life, as well as for when one encounters professionals who may perhaps deem your child's life unworthy.