Bi-Partisan Action and Pediatric DNR's in an Educational Setting

Thursday, January 26, 2017 I went to Lansing to meet with state Senator Rick Jones along with Dr. Ken Pituch, Willy's hospice doctor and a pediatrician with the University of Michigan, Maureen Giacomazza, a nurse consultant with the University of Michigan Pediatric Palliative Care Program, Debra Chopp, University of Michigan law professor and attorney, and two University of Michigan law students Russell Busch and Dorian Geisler.  Russell and Dorian have been working diligently to prepare a case for us and my hat is off to them.

Our goal for the meeting was for the Senator to hear our appeal to amend Michigan's DNR Procedures Act so that it clearly and fully covers children in school--and then decides to more or less immediately introduce our proposed amendments as a bill into the Michigan legislature.  The bill then passes, and then the law is changed: Parents can get DNR's for their children explicitly by law, and schools need to respect those DNR's explicitly by law.

Background:

There is one statute in Michigan that covers DNR's which was passed over twenty years ago.  It's called the Michigan DNR Procedures Act.  It says nothing about parents' ability to make DNR's for their minor children and it says nothing about schools.  This creates ambiguity and uncertainty for both parents and schools.  

We want to amend the act by adding language that explicitly says that parents can get DNR's on behalf of their minor children and explicitly mentions schools as a context in which DNR's need to be respected.

We're trying to frame this change as a "win-win," a way to clarify the law so everyone is on the same page.  We want bi-partisan support.  We've spoken to Right to Life of Michigan.  Other lobbyists have spoken to the Catholic Coalition.  Almost all the signs we've gotten from people we've talked to have been positive.   

The potential obstacle is school districts and their lawyers--who, understandably, are worried about liability.  The act would cover a huge diversity of schools all over Michigan, both now and (theoretically) twenty, even fifty years from now.  Districts and their lawyers are trying to be careful and anticipate something that might go wrong (and get them sued) in the future.  

It's a win-win because we are also willing to add language to the DNR Procedures Act so that it says explicitly that teachers or staff who act responsibly (and who perform comfort care measures, say) are immunized from liability.  The win-win: parents explicitly get the ability to have DNR's for their kids in schools, schools explicitly get immunity if their personnel are doing the right thing.

Of course, there are still lots of little complex details--about how a student's DNR might fit in with her IEP, for example--but that's the basic idea.  We are willing to work with the Senator and other Michigan legislators so that the language about all the little things is just right.  But that's a concern for after we get the Senator on board.  Our first goal is to make the Senator think that (1) this issue is a good cause and (2) that actually passing these amendments, in some form, is politically doable--that there's enough support.

I was sitting right next to Senator Jones and when it was my turn to present, I turned my chair so I was facing him and read my statement.  For that moment, it was just the two of us in the room and I was telling him about Willy. He listened earnestly and was very compassionate.  When I was done he shared with me that although it wasn’t quite the same, he too had a special needs son.  In that minute, he wasn’t a Republican and I wasn’t a Democrat.  He wasn’t a senator and I wasn’t a constituent.  We were simply two parents sharing about our special needs children.

(Interesting twist: Unbeknownst to us, Scott Menzel, Washtenaw Intermediate School District Superintendent, had just days earlier met with Senator Rebekah Warren and she had started the process of sponsoring a similar bill.)

The end result of the meeting was that he was very happy to either sponsor, co-sponsor with Senator Warren, or help in any way he could. Follow-up emails to his office assured us they had already contacted Senator Warren’s office to discuss assisting.

As the bill goes through the legislative process there will be more meetings, committee hearings, and testimony so I will keep everyone posted.

In a time where our country is more divided than ever, it felt good to sit with Senator Jones and see the wheels of democracy in action. 

http://www.mottchildren.org/profile/1132/kenneth-pituch-md

https://www.law.umich.edu/clinical/pediatricadvocacyclinic/Pages/default.aspx

http://www.senatorrickjones.com/

https://www.legislature.mi.gov/(S(izncxegpu4xl2mqzb3v3ru45))/documents/mcl/pdf/mcl-Act-193-of-1996.pdf