Throughout childhood, you’ve been your child’s advocate, making health-care decisions, picking up prescriptions, making sure medication is taken and that instructions from the pediatrician and specialists are followed.
That all changes when your child turns 18.
It’s a startling realization that, at 18, children are now adults in the health-care world, able to make their own health-care decisions and to keep that information private.
It can be frustrating to parents, because health-insurance policies can cover young adult children until they are 26. Parents still get the bills but can’t call the physician’s office to ask any questions about charges related to their child. And young adults don’t always have the follow-through to sort out a billing mix-up.
There are, however, a couple of legal documents that can make a difference.
Consider talking about a health-care proxy with your adolescent before your child turns 18.
The proxy is a simple, legal form that allows anyone to name an “agent” to receive information from the medical team and to make decisions in the event the patient is unable to communicate their wishes.
Most hospitals include a health-care proxy as part of the admission paperwork when someone is admitted to the hospital. However, one way to lessen the stress in a crisis that requires immediate, life-changing decisions is to have a health-care proxy on file. The time to have this conversation with your child is before an acute medical situation occurs.
“It helps to facilitate the discussion at a time when there is no emotion around it and can allow a conversation that is really important,” said Dr. Joanne Wolfe, director of the Pediatric Advanced Care Team, a joint palliative-care program of the Dana-Farber Cancer Institute and Boston Children’s Hospital.
The proxy goes into effect when the doctor determines that your child is unable to make or communicate health-care decisions.
“There are different pieces to the health-care proxy,” said Wolfe. “One is simply to identify who is going to make those decisions for your child if they cannot speak for themselves. Typically, it’s one or both parents. The nuance to the conversation ... is about what the wishes are for that young person,” she said.
There are also tools to help adults have these conversations with young adults. “One we commonly use is called “Voicing My Choices: A Planning Guide for Adolescents & Young Adults,” said Wolfe. “It was developed by a psychosocial team at the National Institutes of Health.”
“Voicing My Choices” includes not only the legal health-care proxy document but also checklists for young adults to communicate their wishes regarding pain management, visitors and what they would find comforting (for example, music, being read to, favorite foods). There is even a section on how they would want their things given away to friends and family after death.
The guide can be used by parents and medical professionals to start the difficult conversations about what medical decisions a child would want their agent to make if they are unable to make them. It is written in language tailored to the needs and preferences of young adults.
As Wolfe said, it’s not a part of the typical conversation parents are usually having with teenagers. If the conversation is difficult, she suggests parents talk it over with a professional who is comfortable having these conversations.
The Health Insurance Portability and Accountability Act, known as HIPAA, in most cases protects anyone over the age of 18 from release of medical records without their permission. That includes any physical or mental-health services your child receives from the college health center even if you are paying the bill. When your child fills out paperwork for college, a HIPAA release may be part of the package. You and your child have to decide what’s appropriate.
Things often get particularly sticky with parents and children when it comes to mental health and/or addiction.
“When a child turns 18 or older, then everything that would apply to an adult applies to the child regarding mental health,” said Mary T. Zdanowicz, an attorney who is the advocacy consultant for the National Alliance on Mental Illness of Cape Cod (Mass.) and the Islands.
“If an 18-year-old is admitted to a mental-health facility or addiction center, the health-care proxy comes into play,” said Zdanowicz. “They can designate a decision-maker, but they can rescind that at any time, which is a particular problem with mental illness,” she said. “And they may not want to give somebody that amount of authority.”
Mental-health facilities and addiction treatment centers don’t contact parents when a young adult is admitted. The staff may not even be able to acknowledge admission.
“Parents are often stopped at that point, and they don’t know what to do,” said Zdanowicz.
She said that parents can make two important requests in those situations:
- Say to the staff member on the phone: “If this person is at your facility, would you ask them to sign a HIPAA release?” This would give the staff permission to speak with you. Under the terms of the law, it must be written in plain language and be specific as to what information will be shared. Your child can refuse to sign this, however.
- Ask to speak with treatment staff. Say that you understand staff can’t talk to you about your child but that you want to give them medical and psychiatric history that may be pertinent. The doctor can’t give you any information but can at least listen to what you have to share.