The new school year at Savannah College of Art and Design just started this week.

Monday would have been the first day of Kevin Riley Hogate’s junior year.

The Mater Dei High graduate and Eagle Scout from Troop 241 out of Orange had spent two years at the Savannah, Georgia, campus. He was 2,400 miles away from home, honing his creative skills for a future career in graphic design.

He thrived, settling into the independence of young adulthood while still enjoying his visits back home during the holidays.

Then the unthinkable happened.

Not yet a month after turning 20 – a date marked on the wall calendar in his dorm room with a scribbled “20 Big Year” – Kevin Hogate suffered sudden cardiac arrest one night in April during a break from playing video games.

He didn’t smoke. He didn’t drink. He didn’t do drugs. He had no history of heart trouble.

What happened to him happens to about 350,000 people in the United States every year – an unexpected erratic and rapid beating of the heart most commonly caused by an undetected arrhythmia. Nine out of 10 people don’t survive.

Someone in Kevin Hogate’s dorm administered CPR until paramedics arrived. It wasn’t enough. He died three days later.

In their grief, his parents have added their voices to those who call for wider access to automated external defibrillators, or AED’s, simple-to-use portable devices that deliver electric bursts with the potential to restore a normal heartbeat. Combined with CPR, use of the defibrillators during sudden cardiac arrest can save lives.

But there is something else Scott and Kate Hogate hope they can help families understand: Information they’ll need or want during a health emergency involving a young adult child may be out of their reach.

With another son who is a high school senior and a daughter in 10th grade, the Hogates are thinking about and acting on possibilities that never occurred to them until Kevin’s death. It’s not easy for them to discuss. But they feel they must.

Privacy rights exclude parents

Privacy laws can make decision making, or simply finding out what happened, stressful, if not impossible, at an already difficult time.

This is what the Hogates learned as they anguished over watching their son suffer two more cardiac arrests in the hospital, undergo and survive a risky surgery, but never regain consciousness. Neurological tests showed no brain activity.

They decided to let him go.

While doctors ultimately allowed the Hogates to make decisions on behalf of their 20-year-old son, they still came away feeling that information had been withheld. When they asked about toxicology, they got no reply. Because it was Kevin’s private business as an adult.

“They were asking us questions but had to be careful about what they would share back,” Kate Hogate recalled.

Beyond providing the means to act and make decisions on behalf of an adult child, the Hogates say the legal documents they recommend obtaining – and electronically storing on a phone – also can apply for an elderly parent or a grown sibling who has no significant other.

“This is an awareness story for everyone,” Scott Hogate said as the couple sat in their backyard, where tributes to their son include memorial rocks painted with loving messages and a fledgling tangerine tree donated by local athletes who had lost one of their own when a Capistrano Valley Christian High baseball player died in March after sudden cardiac arrest.

They are sharing a four-page document titled “Practical Parenting Lessons Learned from the Death of a Child.” They’ve given it to friends, co-workers, schools, youth sports teams and anyone else they think can benefit – especially, as the document states, someone with single or college-bound children 18 or older.

They’ve offered to give talks to parents at local high schools; Scott Hogate has one scheduled at Mater Dei in February. Among the 500 people he reached out to by email is a business acquaintance with a daughter starting college – at Savannah College of Art and Design.

College orientation

Parents are often surprised to learn that although they might be paying the tuition, their access to grades and financial information is blocked under the Family Educational Rights and Privacy Act – unless the student signs a waiver. Similar health privacy rules apply at age 18, even if a student is covered under a parent’s insurance.

The Hogates encourage families to consider legal documents that can involve tough discussions: a durable power of attorney to make decisions if someone becomes incapacitated; a will outlining what to do with any assets; an advance healthcare directive, also known as a living will.

But how many families will actually follow through with that?

Kate Hogate still has the sticky note she dashed off months before Kevin died. Her boss had passed along some advice from an insurance broker friend about securing power of attorney and a health care directive for college-bound children.

“She was adamant about you need to go get this done,” Kate Hogate recalled. “And I didn’t.”

Any parent would understand why: “You always think, ‘Not my kid. Not my kid. Not my kid.’”

Nor is it likely a parent contemplates how a child would like his remains handled.

Kevin Hogate’s license didn’t include a donor designation, but he had never clearly made his wishes known one way or another. In the end, his parents left his body intact for burial.

“You’re not asking your kids what are your last wishes,” Scott Hogate says, “or would you like to be buried or cremated?”

One last thing

There’s one other thing the Hogates recommend families consider: How to access a loved one’s electronic devices. Carriers and manufacturers refuse to breach the privacy of locked phones and laptops.

Sharing passwords is something family members must negotiate among themselves – and probably continually update.

That first day at the hospital with Kevin, the Hogates could not reach out to his roommate, whose number they didn’t have, or vice versa. They watched helplessly as text messages from other friends worried about Kevin streamed across the screen of his locked cell phone.

Scott Hogate ended up cold calling numbers on the bill for their shared cell phone plan. They encourage parents to share emergency contact information with a student’s roommates – something Kate Hogate did do Kevin’s freshman year – and suggest that schools list such information on a whiteboard or flier posted in dormitories and student apartment buildings.

The Hogates have exhausted all but their last chance to correctly guess the password on Kevin’s phone, where they are sure he stored photographs, artwork, and other expressions of his creativity.

The data is one last keepsake they’d like to have.

ORIGINAL POST BY: