Parents: First-Line Healthcare Advocates

I awoke this morning to find my middle-schooler pasty-pale, feverish, and gaunt. I called the doctor’s office, and will head over to have him seen in a couple of hours.

Today, I am reminded of what it feels like to be a healthcare consumer, rather than my usual role as a physician—being the patient, or parent of the patient in this case, is not very fun. In fact, being the healthcare consumer is scary. I feel vulnerable. I don’t want my child to be sick, and I don’t want to rely on an expert (our doctor is wonderful, by the way!) to assess the situation and provide us with a plan. But today I have to trust and rely.

He probably has an acute illness, something short-term. I can already anticipate how the visit will go. Either he will need a week of antibiotics, or we will be asked to watch and wait. Most of my patients are not so lucky. In mental health, I rarely see a teen for a one-time, sick visit resulting a weeklong treatment or supportive care. The vulnerability parents must feel walking into my office is difficult to comprehend.

Increasingly, I read reports of a growing deficit of Americans’ trust in our healthcare system. Waning trust is attributed to many factors: the growing bureaucracy in medical care, a lack of a long-term personal relationship with our doctors, physician conflicts of interest, privacy concerns, seven minute visits… many among us fear we can no longer trust the professionals who deliver our care. But none of my anxiety about the visit today is due to any of these concerns. Even though I trust the doctor and know she will listen and give us the time we need today, my fear is more basic: “What if she doesn’t understand what’s wrong with him? What if our concerns cannot be addressed?”

Those reports I read come from professional medical journals and monographs, written by leaders in the field, all trying to address the quality of healthcare through changes in policy and education. But none of those reports contain anything that helps me today. Today’s clinic visit is not about policy.

As a parent, maintaining trust in my doctor means taking a few simple steps to make myself part of the healthcare team. It usually starts with a theory of the illness that I develop before I walk into the clinic. I might pull out a medical book, talk to a friend, or search the internet for information. Armed with information, I can ask intelligent questions.

And I will make a list. (As a doctor, I always appreciate when patients come in with a list. Lists are the best way to prevent the hand-on-the-door rememberings of important details we needed to address earlier, or the dreaded telephone message afterward noting, “I forgot to tell the doctor…”)

Finally, I will take a few notes when the doctor gives her opinions and instructions. These can guide me after we leave the office, in case I have trouble recalling directions.

We have a long-term relationship with our doctor, an invaluable commodity in healthcare. She knows our histories and she listens. But if I were in the unfortunate position of seeing a new doctor today, I would have a few more steps to take at this visit: I would need to decide whether this person could meet our needs as a family, be ready with a plan if the clinician might not work out, and advocate for the proper system of care to address my child’s specific medical care requirements. My questions might extend, not just to today’s needs, but to the greater spectrum of medical care needs my child has now and will have in the future.

In healthcare situations, the parent’s role is much like his/her role as advocate and overseer with a caring teacher who might not understand a child’s learning issues, or an aggressive gymnastics coach whose style is troublesome. We step in and take action when our experts fail us. We clear up misunderstandings and facilitate communication; we empower our kids to speak up for themselves; we pull them out of situations that can’t be repaired. We are their advocates in every way.


Dr. Deuter is a psychiatrist who specializes in the care of emerging adults.

Posted on March 24, 2014 .