I took a two-year break from blogging because I didn't want to write. I was writing two books as well as this blog and it all just stopped one day. I could blame it on grieving but who really knows. Writing used to be cathartic for me but I gave it up for adult coloring for awhile. (Adult coloring - those two words together make me giggle...) 

Two years and 12 therapy sessions later, I'm back at it. Luckily, with some good news. The DNR bills are going back through the Michigan Congress. (See prior blog posts for more info.) I was also asked to write an article for the eJournal of the National Hospice and Palliative Care Organization (NHPCO). I'll give a shout out to Dr. Ken Pituch, M.D., Professor of Pediatrics at the University of Michigan. Not only was he Willy's hospice physician, he's a friend and a partner on our DNR bill team. He keeps me involved and connected with others who are trying to move palliative and hospice care forward. He was the one who connected me to the folks at NHPCO and I was honored to write this article. 

More to come later but for now here is the article that will be in the online journal when it is issued: 

There is a growing number of students diagnosed with complex disorders who are considered terminally ill but not actively dying. Death for them could be years. As medical technologies advance, lifespans increase, and the question of how to manage their illness and life in general becomes an issue. Every child should have the opportunity to reach their full potential in whatever time     they have, including the social life and peer experiences found in school. This academic piece is an integral part of the world and how children grow and develop, and move away from childhood in stages.

Medically fragile children have access to individualized educational programs that meet their unique needs through Special Education. However, what happens when parents have a do-not-resuscitate (DNR) order for their child? Just like the other details in their individualized student plan, a parent wants to have assurance that a DNR will be honored in the event of a catastrophic incident at school.

In the State of Michigan, the policies with regards to DNR orders are inconsistent at best. For example, in one county it may be policy for teachers and school staff to carry out the DNR orders step-by-step, and in another county, school officials may not honor them at all. This creates ambiguity, confusion, and frustration for both parents and schools.

This is where we found ourselves as a family in 2014. Our son was terminally ill but not actively dying. Our family selected a school in our district that would give him the most appropriate education, however, this school had a policy to not honor DNR orders. Our son needed the education they offered. By law, this was guaranteed to him, but we were unable to appropriately include his DNR as part of his medical plan. The future was uncertain and it was literally life or death.

William Douglas Pickett was born on March 12, 2004. After an uneventful first four months of life, he was diagnosed with lissencephaly on July 9, 2004 in the University of Michigan Emergency Department after a grand mal seizure. Lissencephaly is a rare, neuromigrational disorder in which the brain does not form correctly during gestation. Willy had no gyri (ridges) which are connected to motor skills. At diagnosis, doctors expected Willy to have a 2-year lifespan. They told us to take him home, be prepared to deal with complex seizures and respiratory issues, and basically try to keep him comfortable until the end.

The early years were the most difficult. As new parents, we were learning how to take care of this very sick baby while doing everything we could to keep him alive. Every time he was sick, we thought it was the end. Mott Children’s Hospital at the University of Michigan became our second home. The stress of the entire situation placed an unimaginable hardship on our family, our other children, our jobs, our finances, and our marriage.

As time progressed, we started to pick up some confidence and hope. Willy had longer periods of improved health. He was enrolled in Early On, which offered early intervention, and the therapists and teachers started the blueprint for what would become his education. They opened up a new world for our family. A world where Special Education meant a life for Willy complete with his own goals and peers. The school had equipment that we could never have afforded at home. They had specialists who had studied how to educate and work with this very special population of students. Willy couldn’t walk or talk, but 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 breathe and poop. Those goals weren’t enough for his educators. 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, but therapeutic for his muscles. He received physical, occupational, music, and vision therapies. They went on outings in the town. They did crafts. They listened to stories. He worked hard during therapy sessions and would come home exhausted. He worked himself hard in school and it was a much healthier lifestyle than just lying around at home. After years of occupational therapy, he learned how to hold a toy on his own. He learned how to roll over.

Since lissencephaly is a regressive disorder, Willy’s abilities peaked at a very young age and started to decline slowly every day thereafter. His disorder, along with seizures, pulmonary issues, and cerebral palsy, slowly destroyed his muscles. Any skills he had (swallowing, holding a toy, rolling over, holding his head up,) slowly disappeared. Eventually Willy required a feeding tube so he could get enough nutrition. It is common for respiratory muscles to become badly damaged in children affected with these disorders, and they frequently succumb to respiratory distress as a result of pneumonia.

Regardless of regression, Willy’s educators adapted his goals and met him where he was at. He continued to hit milestones and then regress. Everyone around him would celebrate the gains, and then grieve the losses. He continued to be a happy boy, enjoying music, the pool at his school, outings with his class, snuggling with his loved ones, and watching shows on his iPad.

Willy’s lung function started to go downhill in 2009. We wound up in a 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.  Until then, 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.

In late fall of 2012, Willy had some increased breathing and swallowing issues due to the continued regression and obstructive sleep apnea. A pediatric otolaryngologist presented us with options that were not good and required some form of complicated surgery. The only viable option 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 all of the options and agreed to maintain our status quo. 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 good options. His regression had made it to that crucial juncture where medical technology and quality of life backed into each other.

In June of 2013 Willy was in the hospital for increased seizure activity. This wasn’t something new. We were always looking for the right concoction of medications that would keep his seizures at bay but not drug him out. During this hospital stay, we were once again presented with the option to 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 consider palliative care or hospice services.

The passing into law of the Affordable Care Act (ACA) allowed for concurrent curative, life prolonging, and hospice care in pediatric cases like these. By providing coverage for specialist care and hospice care simultaneously, the ACA makes it clear that some disorders are different in that although they are terminal, death is not necessarily imminent. These patients require the comfort measures that hospice provides and also ongoing care that comes from specialty clinic visits, care that is not available for most adult hospice patients.

Our goal for Willy was for him to have the best quality of life possible for that which remained, and we decided to go home from the hospital on hospice services. This meant that Willy would still be able to attend school. Hospice would support us with weekly nurse visitations, and our supplies were delivered, including oxygen in the home, morphine, and other comfort measure drugs. If Willy became ill, a call to hospice would provide a home visit from a nurse or 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 the parts of his care not covered by hospice. If we could have designed a perfect set-up for our imperfect situation, this would be it.

We worked with a team of professionals to create a care plan for Willy which included a DNR. Knowing it was the right thing for our family, did not make the decision to add the DNR into the care plan any less agonizing. We painstakingly listed all of the facts, and knew it was time. Every time Willy was sick he came back to us a different boy. Less of his old self and more of a tired and uncomfortable one. We knew that if his heart stopped beating and resuscitation was needed, 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.

When we found out that Willy’s school 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 a school district could overrule our decision with regards to our DNR.

We decided to still send Willy to school even though we knew they would not honor his DNR because the pros outweighed the cons. Willy loved school, he deserved school and it was his right. We began the process of a lawsuit against the district to force them to honor the DNR.

In late October, 2015, Willy caught a cold. He went to school on Halloween. His cold turned into double lung pneumonia within days. We began treating him with a round of antibiotics but his body did not respond to the drugs. At any point, we could have rescinded his DNR, called an ambulance, have him intubated, and waited. But we had already made that decision. We followed our DNR, made him comfortable, and waited to see if the medication started to work.

At 12:40 a.m. on November 5, 2015, Willy passed away lying next to me in bed. Our lawsuit with the school district ended when he passed.

We went through all the normal motions that came with losing a child. Even though we knew this day would come, we were devastated and not at all ready. The one thing that comforted me is that I knew we made the right decision for Willy. He died because his body was done. He died on his terms without artificial medical technologies prolonging the inevitable. I knew it would still be important to fight for DNR’s in schools and I wanted to continue this as Willy’s legacy.

After years of attempting the DNR fight through local courts, it was recommended to instead take legislative action. Luckily, Michigan already has a DNR Procedures Act so we did not have to start from scratch. However, the Michigan DNR Procedures Act does not address pediatric DNR’s or the educational setting.

With the help of the University of Michigan Pediatric Advocacy Clinic, The University of Michigan Hospice and Palliative care team, and local educational leaders, work has been done to add language that explicitly says that parents can get DNR’s on behalf of their minor children and explicitly mentions school as a context in which DNR’s need to be respected.

After a year-long vetting process with different lobbyists and stakeholders, three bills were sent to the Michigan Senate Judiciary Committee in 2018 and subsequently all three bills passed the Michigan Senate unanimously. However, the bills got stuck in Michigan’s lame duck session, late 2018 and the process started over.

At the time of this writing, the process has started over in the Michigan House of Representatives first this time. Representative Rebekah Warren (D-55) has gathered co-sponsorship support and the new bills are HB5417, 18, and 19. Next step is for the bills to be heard in a House Committee hearing before being sent to the House floor for a vote. There is more than a good chance they will pass since they passed the Senate unanimously in 2018.

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. 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 the right to a free, public, and appropriate education because of a diagnosis, prognosis, or a medical order. 





://www.mottchildren.org/conditions-treatments/palliative-care

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

https://www.legislature.mi.gov/(S(tdpnwo5hgs1janjb2qd4o0uv))/mileg.aspx?page=BillRecentActivity