Pediatric DNR's and the Right to an Education: Our Day in Court

I just met with the University of Michigan’s Pediatric Advocacy Clinic student attorneys.  They have been diligently working on the pediatric DNR issue under the direction of U of M law school professor Debra Chopp. 

We have all been working on this issue for about 2 ½ years now; trying different ways to “force” all the school systems in Michigan to honor pediatric DNR’s. The processes are sluggish and it takes a lot of patience to watch it all roll out.  Our prior attempts came to a grinding halt when Willy passed because he was the plaintiff.

This time, we are going straight to the Michigan Legislature. Senator Rick Jones (R-24^th Michigan Senate District), who over the years has been a friend to the Pediatric Advocacy Clinic, has agreed to hold a testimony day next Thursday. He is sympathetic to our cause and is interested in learning more.

If it goes our way, he will agree to sponsor a bill to amend the language of the Michigan Do-Not-Resuscitate Procedure Act of 1996 so that schools will have the required protection from liability that their lawyers have wanted. In essence, they will be “forced” to honor DNRs in the educational setting. Considering who Senator Jones is and the fact that we have a Republican majority in both the house and the Senate AND a Republican governor, chances are great that the bill would be passed. (It goes without saying that most Democrats would support this as well.)

Senator Jones will not support any bill that doesn’t have the support of Right to Life.  Right to Life and the Archdiocese of Detroit both have to either support the bill or at the very least be neutral. The law students did their work, reached out to both groups, and received their support. This makes him more interested and brings us closer to our goal.

Next Thursday I will be meeting with Senator Jones along with Debra Chopp, Dr. Ken Pituch from the University of Michigan Hospice and Palliative Care program, and the student lawyers.  It will be closed door testimony.  My hope is that our testimony will be compelling enough for him to agree to sponsor a bill on the spot.  The reality is that the meeting could go many ways. He could say no. He could put it on the back burner.  He could red pen our proposed language change and send it back to us.

This issue affects a small part of our population. It’s not “sexy” legislation. It’s largely bi-partisan. If this bill gets passed, it won’t create world peace of solve homelessness. But to those affected by this issue, it is life and death. It is part of taking care of the most vulnerable of our population, our children who are terminally ill. It will allow us to feel comfortable giving them an education with their peers and know that they will be properly taken care of in school.

I’ve practiced my statement in front of different groups of professionals. I’ve taken their critiques and changed a few things.  I’m ready.  This is the most hopeful I have been about resolving this issue since we started this fight.

If anyone is in Senator Jones’ district (Clinton, Eaton, Shiawassee, and parts of Ingham County – Locke Township, Wheatfield Township, Williamston city, and Williamston Township) please let me know.  I am going to prepare verbiage you can use to send his office a quick email in support of this.  I am not a constituent of his and it doesn’t necessarily matter if he agrees to sponsor the bill.  However, if he has constituents who are in favor, it will help our case if he hears from you.

I’m including below my statement. Please wish us all well. 

My Statement:

First, thank you, Senator Jones, for arranging this time for us to come speak.  I know there are constant demands on your time and we are all very appreciative of this opportunity. I am excited to introduce you to my son, Willy.

My name is Dawn Krause and I am from Saline.  I am married and have three children.  I work as a research administrator at the University of Michigan.  I received two degrees from Michigan State University; one in Eastern European History and one in Interdisciplinary Studies in Social Sciences with a cognate in International Political Science.  Willy’s father works in law enforcement and has a degree in anthropology and his step-mom has degrees in education and social work. My husband has a PhD in American Studies and is a professor at Central Michigan University.  I give you this background for no other reason than to explain how no life experience, job, or level of education could ever prepare you for what we have had to go through.

My middle son, William, (Willy), was born in March of 2004.  My pregnancy with him was normal and uneventful as were his first four months of life. In July of 2004 after a seizure he was diagnosed with lissencephaly.  Lissencephaly is a rare neuromigrational disorder in which the brain does not form correctly during gestation.  Willy had no gyri or ridges which are what gives you your motor skills.  At diagnosis, we were given a two-year life expectancy for Willy.  We were told to take him home, be prepared to deal with complex seizures and respiratory issues and basically try to keep him comfortable while we waited for the end.

The early years were very difficult. We were learning how to take care of this very sick baby and doing everything we could to keep him alive. Every time he was sick we thought it was the end. Mott Children’s Hospital became our second home. The stress of the entire situation was maddening to our family, to our other children, to our jobs, our finances, and our marriage.

After a while we started to pick up some confidence and hope. Willy started to have longer periods of improved health. He was enrolled in Early On in Jackson County and the therapists and teachers there taught us how to give him a quality of life. They opened up a new world for us. A world where special education meant a life for Willy with goals of his own. They had equipment at school that we could have never afforded to have at home. They had specialists there who had studied how to educate and work with this very special population of students. They focused on what he could do not what he couldn’t do.

Sometimes their goals were lofty which made us laugh. We joked that we really just wanted him to poop and breathe. (Constipation was a large part of our lives and caused a lot of problems for Willy.) They wanted more for him. He learned to hold his head up. He learned to make choices with his eyes. He enjoyed swimming in the therapy pool which was not only fun for him but good for his muscles. He received physical, occupational, music, and vision therapies.  They went on outings in town.  They did crafts. They listened to stories. He worked hard during therapy sessions and would come home exhausted. He was healthier when he was in school because it is a much healthier lifestyle than just lying around at home. After years of working with occupational therapy he learned how to hold a toy on his own. He learned how to roll over.

Unfortunately, as I mentioned, lissencephaly is a regressive disorder.  This means Willy’s performance peaked at a very young age and started to decline slowly every day thereafter. Mind you, it was a slow regression and we had a lot of really good years in there. But his disorder, along with severe seizures, pulmonary issues, and cerebral palsy, was slowly destroying his muscles. Any skills he had (swallowing, holding a toy, rolling over, holding his head up,) were slowly going away.   Eventually we had to put a feeding tube in so he could get enough nutrition.  Your muscles control everything; how you eat, swallow, breathe, urinate – everything. His respiratory muscles were especially damaged from chronic pneumonia.

Even so, the educators and therapists working with us just kept changing the goals. Adapting. Meeting him where he was at. He continued to hit goals and milestones and then he’d regress and lose some skill or function.  We’d celebrate the gains, no matter how small, and we’d grieve the losses. For the most part, he continued to be a happy boy, enjoying music, the pool at his school, outings with his class, snuggling with loved ones, and his iPad with his shows.

We had maintained a very pro-active and aggressive approach to his care. Even though he had been given an approximate life expectancy of 2 and he was now 7, his life had been much better than we ever could have anticipated. When the hospice and palliative care teams would come visit our hospital rooms we promptly sent them away. We knew Willy had a lot of life left to live.

Willy’s lung function started to go seriously downhill somewhere around 2009.  We wound up in an on again-off again cycle of hospitalizations that lasted over three years.  Usually he’d start with a cold or sniffle and the next thing you know we were in the intensive care unit and he was fighting for his life.

In late fall of 2012, Willy had been having some increased breathing and swallowing issues due to the continued regression and his obstructive sleep apnea. We had an appointment with Dr. Charles Koopman, an ear, nose, and throat physician, to see what our options were.  The options that were presented to us 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. 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. His regression had made it to that crucial juncture where we realistically couldn’t do much more to keep him alive with the quality of life that he deserved. It was at this point that I realized Willy was terminally ill but not actively dying. This phrase would become the basis for all the decisions we made from then on. We needed to adjust our decision making accordingly.

In June of 2013 Willy was hospitalized for increased seizures. This wasn’t something new. He’d have a growth spurt, or his hormones would change, or a medicine he was one would lose its efficacy. We were always looking for the right concoction of medications that would keep his seizures at bay but not drug him out. I’ll leave out the details but during this hospital stay, it was presented to us once again that we could consider palliative care or hospice services. Not only had we tried almost everything we were willing to try, Willy had gone quite a bit downhill in the years preceding. It was time for us to have the talk about where we go from here and whether or not it was time to consider palliative care or hospice services.

The ACA allows for pediatric hospice patients to also receive specialty physician care in cases like these. These patients require comfort measures that hospice provides and also curative care that comes from specialty clinic visits. This would make the perfect support set-up for the last few years of Willy’s life. If we could have designed perfect care for our imperfect situation, this would be it.

With our goal being the best quality of life possible for the time that Willy had left (remember – he was not actively dying at this point,) we decided to go home from the hospital on hospice services. Willy would still be able to attend school. We would have support by way of having supplies delivered, oxygen in the home, and morphine and other comfort measure drugs available to us for his care.  All of our medications would be ordered by the nurse who came once a week to check on Willy and delivered right to our home. If Willy became ill, a call to hospice would send out the nurse or the doctor. If Willy needed antibiotics we could get them. If Willy took a turn for the worse, we could either provide the comfort measures we had in the home or we could change our minds and head for the hospital for more aggressive treatment. We were also able to still see our physiatrist and our neurologist in clinic for specialty care.

We worked with a team of professionals to design a medical care plan which included a “do not resuscitate” (DNR) order. The decision to add the DNR into Willy’s care plan was no less agonizing just because we knew it was the right thing to do. Taking all of the facts into consideration we knew it was time. Every time Willy was sick he came back to us a different boy; less of his old self and more tired and uncomfortable. We knew that should something happen where his heart stopped beating, we would not want that for him. We would want comfort measures. We would want him to be surrounded by people who love him, whether at home or at school, holding his hands and staying by his side. Once we made this decision we never looked back.

At the time, Willy was attending Haisley Elementary in Ann Arbor, Michigan and they honored his DNR. We had a team meeting to put protocols in place and off to school he went.

The next school year we made the decision to transfer Willy to the Washtenaw Intermediate School District.  They have a specialized special needs program and there were more services available for Willy including a very warm therapy pool which we knew he would love.  We were sad to leave Haisley but, again, keeping in mind quality of life, we knew it was the right decision.

When we found out that the WISD would not honor his DNR we were crushed. We would have been devastated if something had happened at school and resuscitation was attempted. I am very sure this is a difficult concept to understand for parents and adults who do not live in a world where children are terminally ill. But we did live in that world and it was not acceptable that school district lawyers could overrule our decision with regards to our DNR.

We decided to still send Willy even though we knew they would not honor his DNR. We knew the pros outweighed the cons. Willy loved school. He loved the pool. He needed the therapy and the stimulation they offered there. However, we did start a lawsuit against the district to try to force them to honor the DNR.  The suit was still in progress when Willy passed in November of 2015.

For Willy and kids with these regressive disorders, the “end” can be years. In the meantime, they have to live. They deserve an education. They deserve a life of their own with an educational program designed for them. This is a right under the Free Appropriate Public Education (FAPE). FAPE is an educational right of children with disabilities that is guaranteed by the Rehabilitation Act of 1973 and the Individuals with Disabilities Education Act. The fact that they have terminal disorders and may have a DNR should not infringe upon their right to an education. The school districts that serve our state must be consistent in their policies regarding pediatric DNR’s. Their policies should not change across town or across another district’s border.  Just as you’d write a medical care plan that included an epi pen for a student with a deadly allergy, medical care plans for student’s with DNR’s should also be included in the educational setting.

When a parent or guardian reaches the agonizing decision to write a DNR for their child, no one should be able to tell them that the DNR will not be honored. Especially in an educational setting where they have the right to have the same experiences as their peers right up until the day they pass. No child is less entitled to their rights to FAPE because of a diagnosis, prognosis, or a medical order.

I ask you today to consider our story but please know there are many more out there just like ours. I ask that DNR’s be honored in all educational settings in our great state. I ask that the laws allow medical care and educational professionals to team up with the families to write appropriate care plans that are as individualized as the student. Proper protocols and policies will follow so that staff is comfortable and knows what to do in case of a situation with a student. Many districts already honor DNR’s and have put appropriate policies in place. Something as important as this, which really comes down to life and death, should be consistent between every educational jurisdiction in our state. Please work with us to help make it so.

Thank you.