A Gilbert mom asked her son's school to honor his 'do not resuscitate order.' The school refuses to do so.

A Gilbert mother says she wants her son's high school to honor his "do not resuscitate" medical order, but they are refusing. She's now speaking out with the hopes school leaders will understand why the family feels it's important it be followed.

"He is just this dynamic kid that brings the life to the party," Susie Jackson said.

Jackson's 17-year-old son, Rigo, was born with several medical conditions.

"His main diagnosis is Pallister Killian Syndrome; he also has global developmental delays, Cerebral Palsy, general Epilepsy, Dystonia, where he has a lot of pain," she said.

However, the multiple diagnoses he's received have never stopped him from living his life to the fullest.

"He finished a triathlon, and I've never attempted a 5K," Jackson said. "So I think he's doing pretty good here. He's equally as active as anybody; we just adapt as needed."

A senior in high school, he still has a lot of life to live. However, this past year, his health has declined a bit, which resulted in some tough conversations. Specifically about what would happen if his heart stopped and how much intervention was right for him.

"His bones aren't that different from someone in their late 80s because of how low the bone density is," Jackson said. "We met with his palliative care team and they discussed having a DNR on file for him due to the fact that if he'd be compressed with CPR, it may restart his heart, but it's likely not going to prolong his life."

His parents said they just want to be prepared in case something happens, and ultimately feel a "DNR" or "do not resuscitate" order is appropriate.

"It took us a long time to agree that that was in his best interest," Jackson said. "It was a lot of research, talking to people who are educated, physicians, social workers in the field. [CPR] is not going to help him; it's going to hurt him, and no parent wants to hurt their child. So, as hard of a decision as it was to make, it's one we did because we love him and because when his time is done on earth that he gets to do that peacefully." 

Jackson, though, said the Gilbert Public School District, where her son attends high school, won't honor that "DNR."

 "I was really upset," Jackson said. "I felt like we had everything in place, and we finally came to feel at peace with the decision, and now it was being uprooted. It's unlikely his heart will stop at school, but we have to protect him at all costs. How do we send him to school now?"

"At Gilbert Public Schools, we take the health and well-being of our students extremely seriously and work to ensure all students are as supported as possible on our campuses. As a school district, we must also ensure we work within the legal requirements and guidelines." 

The Arizona School Board Association also gave 12News a statement, saying in part: 

"The Arizona School Boards Association does not have a statewide policy specific to Do Not Resuscitate (DNR) orders in schools. Each district adopts its own policies, and while there are state statutes that outline parents’ rights to make health care decisions for their minor children, including in education settings, there is no single statewide rule requiring school districts to follow or not follow DNR orders."

Jackson isn't giving up hope and has been speaking at School Board meetings so members can come up with a policy that would help her son and others prepare in case the unthinkable were to happen.

 "He's living his life; this is not a death sentence for him," she said. "He's living every day to the fullest, but we have a plan in case, and that's something I think every parent should be prepared for."

The full statement from Gilbert Public Schools is as follows:

"At Gilbert Public Schools, we take the health and well-being of our students extremely seriously and work to ensure all students are as supported as possible on our campuses. As a school district, we must also ensure we work within the legal requirements and guidelines. 

Please see below the detailed information regarding this. Our goal is always to put our students first and provide support while working within legal requirements.

DNR Orders and PHMC Directives

State laws concerning do not resuscitate (“DNR”) Orders and pre-hospital medical care (“PHMC”) directives are not applicable to the District (See A.R.S. § 36-3251(H)). District personnel shall not comply with DNR Orders or PHMC directives or other directives or requests that emergency life-sustaining care be withheld from a student in need of such care while the student is under the control and supervision of the District. Any such request should be made by the parent or guardian to the emergency response team at the 911 dispatch office or to the treating physician(s) and medical staff. A District employee who is informed about or receives a copy of a DNR Order or a PHMC directive pertaining to a District student shall promptly notify the school principal.  The school principal shall then promptly notify the Assistant Superintendent of the Order. A Certified Nurse employed by the District is not authorized by law to recognize a DNR Order. In Arizona, a certified nurse employed by a public school district is not explicitly authorized to recognize a Do-Not-Resuscitate (DNR) order in the context of medical emergencies involving children and adults with disabilities in public or private schools. A.R.S. § 36-3251 specifically states that the provisions of the statute regarding prehospital medical care directives, including DNR orders, do not apply to such situations in schools that are not licensed health care institutions. Additionally, while A.R.S. § 36-3251 allows professional nurses licensed under Title 32, Chapter 15 to pronounce death in certain circumstances, this does not extend to recognizing DNR orders in the school setting as described above. Furthermore,  A.R.S. § 36-419 defines a DNR order and the responsibilities of providers, including nurses, but does not provide specific authority for school nurses to act on DNR orders in public school settings."

The Arizona School Boards Association's full statement is as follows:

"The Arizona School Boards Association does not have a statewide policy specific to Do Not Resuscitate (DNR) orders in schools. Each district adopts its own policies, and while there are state statutes that outline parents’ rights to make health care decisions for their minor children, including in education settings, there is no single statewide rule requiring school districts to follow or not follow DNR orders. In ASBA’s model policy KB/Parental Involvement in Education, parents are recognized as having “the right to make all health care decisions for the minor child, including rights pursuant to sections 15-873, 36-2271 and 36-2272, unless otherwise prohibited by law.” This language reflects the statutory rights of parents but does not specifically address DNR directives. Because situations like these can be highly complex and involve both medical and legal considerations, local districts often work closely with their legal counsel, health care providers, and in some cases the courts to determine the appropriate course of action."