Adult Children with Serious Conditions Need a Health Care Surrogate
Barry E. Haimo, Esq.
April 23, 2015
Having a child who is truly sick with a serious illness is every parent’s worst nightmare.
You feel angry, sad, and helpless all at once. You rearrange your life to ensure they receive the best possible care. Even if a doctor tells you there’s nothing to be done, you get a second opinion – and possibly a third. Sometimes your life becomes a seemingly endless nightmare of hospital waiting rooms, cafeteria meals, and simultaneous hope and terror whenever a doctor appears.
But as soul crushing and draining as that kind of life can be, there’s something worse: not being told anything. Dale and Marni Newman learned this the hard way when their son, Peter, turned 18.
“Is the Cancer Back or Not?!”
As any parents would be, Dale and Marni Newman were devastated when Peter was diagnosed with leukemia at the age of six. It seemed like something that shouldn’t be possible. How could he have cancer? He was just a boy!
Somehow, they made it through the months of chemo and testing and the unexpectedly bursting into tears, and through it all, Peter was their rock. No matter how bad things got, he always had a positive attitude and was smiling. Sometimes just seeing his face lifted the weight crushing down on them a bit and eased their days and weeks spent sleeping at the hospital. Being with him, as hard as it was, was far better than those times when they couldn’t see him, and even when one parent tried to give the other one a “vacation” by sending them home, it wasn’t long before they were back.
Finally, right before his seventh birthday, Peter’s doctors said that his cancer was gone and gave him a clean bill of health. Obviously, they would have to follow up and do more testing, but as far as they could tell, he would be just fine.
The Newmans celebrated with a small family gathering for Peter’s birthday, all of them too nervous to truly believe the cancer was gone and he would be okay. Everything seemed so fragile that they just didn’t want to risk it. But time passed, and eventually their lives returned to normal. They could almost believe that his bout with cancer had never occurred.
And then, when he was 14, the cancer returned and, along with it, came the fear, doubt, helplessness, and, of course, the hospital stays. But they caught it quickly this time, and after only a few weeks, doctors again declared him cancer-free. Dale and Marni accepted this news gratefully, but they knew from that point on, they would always be keeping an overnight bag ready.
Everything went smoothly until the night before Peter’s high school graduation. He and his friends went out to celebrate and have one last hurrah before going their separate ways at college, and Dale and Marni answered on the second ring when Peter’s friend, Jackie, called to say that he had collapsed and been rushed to the hospital. With practiced precision, they grabbed the things they needed and were out the door in two minutes and arrived at the hospital twenty minutes later. They rushed to the front desk, asked for Peter Newman… and were told absolutely nothing. The desk attendant wouldn’t even confirm that Peter was at the hospital.
His parents were furious. What the hell was the matter with the attendant? They were Peter’s parents. How could the hospital keep them in the dark like this? In years past, they’d practically lived in the damn place, and now they wouldn’t tell them anything?
The attendant apologized, but said that he legally wasn’t allowed to say anything because he would be violating HIPAA. “How is letting us see our son a HIPAA violation?” Marni exploded. “In the past, we’ve stayed in his room!”
“I understand,” said the attendant, “but last month, your son turned 18. Since he is now an adult, you don’t have any more parental rights to his medical information. He has to give you permission with a validly executed health care surrogate.”
“A what?” asked Dale.
“A consent form,” he answered.
They turned to pleading.
“You don’t understand,” Marni tried. “Our son is a cancer survivor. He’s had two serious battles. We practically lived here with him while he was going through it.”
“If the cancer is back, we have information that we need to tell the doctors,” said Dale. “If that’s why he collapsed, this might be incredibly serious. The doctors have to know so they can help him.”
The attendant empathized but wouldn’t budge. The hospital would get in trouble and he would lose his job. The attendant apologized but said that there was nothing he could do but they were welcome to wait.
Dale and Marni had never felt so helpless. What was Peter going through? Was he even there? Should they go home and wait for a call or stay?
Thankfully, Peter woke up a few hours later and immediately asked for his parents. They were led back to his room and quickly learned that he was totally fine – the cancer was not back. He had simply passed out from heat exhaustion because he and his friends were out all day in the sun and he ran out of water.
Though they were relieved, Dale and Marni made sure that the first thing Peter did was to establish a health care surrogate that gave them access to his medical information. This was not something they planned on going through ever again.
Eighteen Is an Adult Where Medical Information Is Concerned
The Newmans were so used to being given complete access to Peter when he was sick that neither one of them ever imagined a scenario where they would be excluded. To experience it in such terrifying conditions was a real wake-up call, though, and hopefully it’s a wake-up call to other parents as well.
It doesn’t matter if you’ve always been allowed to see your child in the past. It doesn’t even matter if the hospital staff is on a first name basis with you. When your son or daughter turns 18, you need consent to learn about any of their medical information.
Instead of finding yourself in a situation like the Newmans, plan ahead by working with a professional to draft a health care surrogate that will ensure you have complete access. Otherwise, you could be left in the dark when your child needs you the most.
Barry E. Haimo, Esq.
Strategic Planning With Purpose
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