It’s every parent’s nightmare. You get that phone call in the middle of the night delivering the horrific news that your child was in an accident. You rush to the hospital, numb, but ready to serve as your child’s advocate and to make all the right decisions about his care. When you get there, you’re told that you have no say in his care. Ok, then, you wonder: why did they call me? Oh, yes, you are the party responsible for the financial obligations. You can pay, but you can’t say!
For Rae Stone, that is exactly what happened. Here’s her story as reported by wral.com
Rae Stone says her son Forrest had just turned 18 and was still in high school when a snowboarding accident sent him to a hospital in critical condition. He was hooked up to a ventilator in the intensive care unit.
“They took, essentially, the front third of his skull off so that the brain could swell without causing further damage,” said Stone, who lives in The Plains, Va.. “They told us we should prepare for him not to wake up from his coma. I’m like, ‘How do you prepare for that?’”
Legally, Stone’s son was an adult. Under HIPAA, the Health Insurance Portability and Accountability Act, his medical issues were none of his parents’ business, even if he was still on their insurance.
In cases like that, when a child can’t speak for himself, a care provider can make the medical decisions in what is known as “implied consent.” In Stone’s son’s case, doctors were deemed to be his care providers.
As her son lay in a coma, Stone hired an attorney and appeared in court for what she described as a “mini trial” to get legal guardianship to make medical decisions for her son.
Attorney James Vann says if parents want a say, they must have their child’s permission in writing.
“A lot of times, we think of this as someone who’s getting older, but it really applies to all of us,” he said. “Whether or not a feeding tube is placed in, whether or not to take off life support could be issues.”
HIPAA laws that are now in place to protect privacy are so restrictive that even the parents who pay for the insurance and, ultimately, the medical care, of an adolescent child are not permitted to have access to their health information. In Rae Stone’s case, her child was 18, legally an adult. But he was still a senior in high school and still on his parents’ insurance plan. However, in certain instances, the privacy of adolescents who are minors is also protected. The Guttmacher Institute outlines some of those situations on their website:
Every state has laws that allow minors to give their own consent for some kinds of health care—including emergency, general health, contraceptive, pregnancy-related, HIV or other STD, substance abuse and mental health care. Every state also has some laws that allow minors to consent for care if they are emancipated, mature, living apart from their parents, pregnant, parents, high school graduates or older than a certain age. Many of these laws have been in place for several decades. The HIPAA privacy rule defers to them.
Adolescents and the professionals who provide their health care have long expected that when an adolescent is allowed to give consent for health care, information pertaining to it will usually be considered confidential. The language of the statutes themselves sometimes supports this understanding. Many minor consent laws contain explicit provisions regarding the disclosure of information to parents. Some do not allow disclosure without the minor’s permission. Others leave the decision about disclosure to the physician’s discretion. Very few mandate disclosure. Some minor consent laws are silent on the question of parents’ access to the information. In those cases, unless state or other law addresses parents’ access, the HIPAA rule gives discretion to the provider or health plan to decide whether a parent who requests access should have it; the decision must be made by a licensed health care professional.
It is clear that the government thinks it can be a better parent to our children than we can be, and it doesn’t seem like this attitude is going to change any time soon. So as parents we must be wise and put in place legal documents that will allow us to make medical decisions for our children when they need us and that will give us tools to protect them from what might be poor decisions on their part.