The Art of Talking About Dying

Well, happy Sunday, huh?

A couple months ago, I volunteered to speak at an Ethics conference about Do Not Attempt to Resuscitate (DNAR) standards in terminally ill children.

My conversations this last week went somewhat like this....

"Heather, what are you doing on Friday?"

"Well I'll tell ya, I'm speaking about do not resuscitate standards in terminally ill children."

I would get one of two responses. The first would be a shudder the second would be a comment such as....."Well, that sounds about as much fun as swimming in quicksand with a nest of angry rattlesnakes." 

And then I would say, "Are they angry because they are in quicksand or just because they are rattlesnakes?" It was about that time that I would loose my audience....because there is no joking about rattlesnakes when taking about a DNAR on terminally ill children.

And they are right, there is no joking.

But there should be talking.

Because a very large population that we serve has thought of or had to deal with the worst thought possible....will my child die from this disease?
 
or when will my child die from this disease?

All you need is a couple trips to the ICU and this does become a very really possibility. And the last thing these families need is for the rest of us to shy away from the very real possibility they are living with everyday.

So on Friday, at the Children's Hospital Ethics Conference, we did not shy away from this conversation. We talked about it openly with Doctors, Nurses and Parents; talked about when these conversations should be had and the importance of a medical community being open with families.

Our own lovely Maria Hopfgarten talked about our Jacob and the conversations they have had about end of life care.

At 12:30, I was scheduled to speak at Grand Rounds about what could happen if a terminally ill child died at home without legal documents such as a CPR Directive or DNAR. This would be the first time I talked publicly about the last day with our girl.

I didn't eat lunch, because I felt like I would loose it. Instead, I walked outside, looked up at the sky and asked Samantha for help, if it is so important to talk to these doctors and parents, I need you here.

And I felt that she had landed on my shoulder.

And I felt better.

I talked openly about our investigation with the Sheriff's office despite Samantha's numerous and life-threatening conditions because we did not have legal documents in place.

Because we did not feel like she was in a life-threatening place.

Until she was.

I spoke for ten minutes which felt like the equivalent of a marathon. The remainder of Grand Rounds was about getting these documents in place and the changes that have been made at Children's because of our experience with the Sheriff's office. When we ended, my knees could not stop shaking and I needed a nap.

But ironically, I could not stop smiling. Our girl, as always was changing lives and making an impact. And as always, it's when I'm doing this work, that I feel so close to her.

Thank you Children's for having these hard conversations.