Having treated thousands of foster youth over the course of a decades-long career, and consulted on monitoring practices for many systems, I believe that the informed consent process for treating kids in foster care with psychiatric medication is broken. It has evolved into little more than bean counter monitoring: recording whether a signature is on a piece of paper that in many if not most instances hasn’t met the minimum criteria for true informed consent.
Biological parents’ views are frequently marginalized or not heard. The process must be reformed to empower parents by providing them with optimal information about risks and benefits of the proposed medication and all the reasonable medical and non-medical alternatives. Improving the processes is key to lowering our national reliance on using drugs to control behaviors and emotions in foster children.
Multiple studies have concluded that children in the foster care system are over-prescribed psychiatric medication at a rate significantly higher than other children. One huge contributor to this problem is that biological parents or legal guardians are frequently pressured or even frankly coerced to sign off on these prescriptions without having ever spoken to the psychiatric provider.
The consent forms that parents or guardians are asked to sign do not contain sufficient information about benefits, risks or alternatives to allow them to make a true informed decision about the psychiatric care of their children. The lack of parental advocacy is one of the many causes of overmedication in foster children.
Many forms state that the parent has met with the provider and the justification for the medication, its benefits and risks were discussed. In most of these instances, the parent has not met with the provider and an agency case worker obtains a signature without any meaningful information given to the parent. In fact, obtaining a signature on a piece of paper that lies when it states that the parent met with the provider is fraudulent.
Other consent forms lump all medications in the same class into a single consent document — for instance, all selective serotonin reuptake inhibitors (SSRI) antidepressants — even though not all medications even if in the same class are equal.
For example, Prozac has more research and proven evidence-based effectiveness than some of the other SSRIs. It may be slightly safer. Because of its long duration, there is no withdrawal if suddenly stopped, or loss of efficacy if an occasional dose is missed. This is especially important in treating youth in the child welfare system, as many kids may miss doses, not take the medication consistently or even suddenly stop it while taking high doses.
At the other extreme, Paxil frequently may result in withdrawal symptoms even after a single missed dose. Lumping all SSRIs together misses these important differences that parents need to be aware of in choosing the best treatment for their child.
I rarely see a consent form that discusses the actual likelihood of a positive response. Instead I see vague statements such as ‘antidepressants are an effective treatment for depression.’ Although this may be true for adults, not all antidepressants are proven effective for children with depression. Parents must know if a medication is approved by the Food and Drug Administration as effective and safe for the specific indication in the specific age group. If a medication does not have FDA approval for children for the specific use it is being prescribed, the medication is experimental or even worse, studies were done proving the medication may not be safe or effective. Even if a medication is effective, parents must know how effective it is.
When a consent form states that Adderall is an effective treatment for ADHD, that does not provide adequate information to make an informed decision. Is the medication 100% effective, 60% effective, 20% effective?
One must also consider the placebo effect. Many psychiatric medications have high placebo response rates. If 70% of children respond to the active medication but 40% respond to the placebo, only three out of 10 children are responding to biological effects of the medication; four out of 10 are responding to the psychological effects of being prescribed medication that they believe will be beneficial and all 10 children are at risk for side effects.
In these instances, the medication may play a role in treating some of the children. But the treatment of first choice might be a trauma-based psychotherapy and the addition (if needed) of wraparound services, with medication possibly being reserved for the few children who do not respond to these interventions.
Most consent forms are not nearly explicit enough about the risks of medication. Most noteworthy is the lack of inclusion of rare but dangerous side effects that the FDA determined to be highlighted for importance in a black box warning. Also, stating that a medication “may cause weight gain” is different from stating that a child may gain 20 to 30 pounds on certain antipsychotics, or that the weight gain and sedation of medication such as Zyprexa may be threefold compared to adults.
In order for a parent to determine the best treatment for their child, they must weigh the benefits and risks of multiple reasonable alternatives. I rarely see any alternatives presented, although there usually are multiple reasonable alternatives available. There are multiple medications and non-medication interventions available to treat high blood pressure. Likewise there are multiple treatment options to treat ADHD, depression or anxiety.
But psychiatric providers rarely present biological parents of foster children with the reasonable alternative choices including non-medication treatments such as psychotherapy or home-based interventions, or the safer medications without massive sedation or weight gain risks that are routinely offered to parents not involved in the child welfare system.
Despite the barriers to a meaningful consent process I describe, it is not uncommon for parents to still object. Instead of respecting the parents’ decision, psychiatric providers and child welfare staff may view parents’ refusal to sign as medical neglect or further evidence of their unfitness to parent, and request an override of parents’ objection. Yet this is furthest from the truth. The vast majority of objections that I have reviewed have been valid.
Many parents have told me that diabetes and obesity are present in multiple family members and they do not want their child who is already overweight and at risk for diabetes on a medication that increases the risk of obesity and diabetes. Some parents prefer other reasonable non-medical interventions. It is a travesty that agencies request overrides instead of honoring parents’ informed decisions for reasonable alternatives.
A final problem with the typical consent process is that if parents are not available within 24 hours, agencies will frequently provide the consent themselves. This is unjust in most cases. Only in emergency situations where the child is in an ER or a hospital does treatment need to start immediately, and in those emergency situations most state regulations temporarily waive parental consent.
Even if a parent is available, they should be provided more than 24 hours to weigh the alternatives, do their own research and seek out opinions from others who they trust such as extended family, close friends, a therapist or clergy. In fact, in my own practice, I rarely provide the prescription at the end of the first session. Since I provide multiple alternatives and a great deal of information about each alternative, I encourage parents to take as much time as they need to arrive at the best decision for their child.
We need to develop consent forms and processes that address the issues of benefit, risk, likelihood and alternatives.
Empowering parents to make decisions and respecting parental rights will help to increase their understanding of the child’s mental health needs and ultimately reduce the over use of psychiatric medication for children in the foster care system.
Other news outlets don’t cover child welfare and juvenile justice like we do.
News for people, not for profit.