Q&A: What Is Informed Consent, and What Should I Know to Help My Child?

Even though the practice of informed consent for treatment has been required since 1957, that was not my experience in the 1990s, when my 13-year-old daughter Eileen became depressed in middle school. I was deeply concerned about her and called my psychiatrist, Dr. Sherman, knowing he’d find a way to see her quickly.

Because my daughter gave her permission, I was able to sit in on her consultation with him and answer questions that needed more elaboration. After talking with her for no more than thirty minutes, the doctor prescribed Wellbutrin. “It’s working for your mother, so there’s a good chance it will work for you,” Dr. Sherman told Eileen (both are pseudonyms). He handed me a prescription, and that was it—there was no discussion of any possible negative effects or alternative types of care, nor did he discuss the suitability of that drug for a young teen. 

The best source of information on drugs back then was The Pill Book, a consumers’ guide to drugs compiled by pharmacist Harold Silverman. I had already asked Dr. Sherman about the many adverse effects listed for Wellbutrin, including the risk of seizures and hallucinations, as well as dizziness, rapid heartbeat, migraine, sedation, agitation, and tremors, just to name a few of the effects listed as “most common.” He always brushed me off and told me, “Those things hardly ever happen,” or “I’ve never had a patient complain about that drug.” And indeed, after trying numerous antidepressants without a successful outcome, Wellbutrin seemed to be working for me, so I trusted him. And I trusted that my daughter would find success as well. 

Looking back, I wish that Dr. Sherman had given me more information about the options for helping my daughter through her experience of depression. My experience and the experiences of others I know who are dealing with teens in a similar situation have caused me to look into the origin of including the patient in the decision making about treatment and what’s included in the process known as informed consent. I hope that readers will find the following questions and answers helpful if they find themselves in a similar situation. 

Q: What is the history of informed consent and shared decision making? 

A: Today we take for granted that when we see a doctor for medical care, they will discuss with us the benefits, positive and adverse effects, and alternatives before proceeding with implementing a care plan. This process of talking with a patient about a proposed treatment is referred to as informed consent. And while consent for medical procedures has been routine for a very long time, informed consent only came about as a legal doctrine in 1957 as the result of a court case. In 1982, the President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research expanded the view of informed consent to one of shared decision making (SDM). Mental health researchers James and Marcia Day Childress describe SDM as ”…a middle way between a paternalistic approach (the physician knows best) and an autonomy based approach (the patient knows best). It recognizes both physician beneficence and patient authority and respects, protects, and supports autonomous choices.” 

While I have not personally heard people refer to a formal process of shared decision making, when a patient and doctor discuss the scope of diagnosis and treatment, it’s commonly understood that, in most cases, the patient has the final say regarding whether or not to take a certain drug or to participate in the recommended treatment options. 

Q: What does the American Psychiatric Association (APA) say about informed consent for psychiatric care? 

A: In 2014, the American Psychiatric Association had this to say about informed consent: 

All physicians are required to obtain a patient’s informed consent before initiating medical treatment. This means that before a patient agrees to treatment she must be given a fair and reasonable explanation of what the treatment will entail. It must be clear that the patient (or the patient’s legal representative) understands what risks the treatment involves or the consent granted will not be effective (i.e., will not shield the doctor from charges of battery or negligence).

The APA goes on to explain that what is customary for a physician to explain about a treatment is no longer adequate. Instead, the physician must employ a patient-oriented standard which includes “… ‘material’ information about risks a reasonable person in the patient’s situation must know to make an intelligent decision.” Such a disclosure includes “the severity of any risks; injurious effects, including death; why treatment is needed; the possible success of such treatment; and the alternative, available treatments that are comparable and may be less dangerous.” This process of informed consent may take place verbally or in written form. Your state may have guidelines for such a process.               

Q: I’ve heard that some doctors believe that a chemical imbalance in the brain is the cause of depression, but my child has been pretty stable up until a few weeks ago, when he started acting unusually sad, moody, and withdrawn. What are some of the common causes of depression? 

A: While most people, doctors included, have been told that depression is the result of a chemical imbalance in the brain, the latest research has completely debunked that explanation. Dr. Joanna Moncrieff and five colleagues conducted an extensive review of numerous studies that looked at the hypothesis that a deficiency in the neurotransmitter serotonin is responsible for depression. Their results, published in the Journal of Molecular Psychiatry in July of 2022, concluded that “there is no evidence of a connection between reduced serotonin levels or activity and depression.” They further concluded that there was no evidence to support the theory that genes are responsible for depression. They did conclude, however, that “the effects of stressful life events … exerted a strong effect on people’s risk of becoming depressed—the more of these a person had experienced, the more likely they were to be depressed.”

So, if there is no basis to believe in the chemical imbalance theory of depression, what are some of the likely causes of depression in young people? Many times, when someone feels depressed or withdrawn or sad, it’s because of stressful life-events or difficult experiences the person has had. Various psychosocial issues including problems with peers, low self-esteem, less attachment to parents, being overweight, and limited opportunities for physical activities and sports are a few of the causes mentioned in a 2019 article in American Family Physician. 

It can be helpful to ask your child, “What happened to you?”, as Dr. Bruce Perry suggests in his book of the same title. In talking to your child, you could ask if anything is going on with their friends, or if there are problems with one of the teachers. Perhaps the child is worried or sad about a family situation, like an illness, divorce, or an aging grandparent. Bullying, both in-person and on social media, is frequently cited as a cause of depression and anxiety in children and adolescents, as is the excessive use of cellphones. 

Two other possible causes or contributing factors to teen depression are marijuana use and birth control pills. In many states, medical marijuana is legal and an increasing number of states have legalized recreational pot as well. The potency of THC, the substance that is psychoactive and can produce a “high,” has greatly increased due to selective breeding of the plants and consequently, many teens who use pot may find themselves battling depression and other psychiatric disorders. Additionally, pot use can impair your driving ability and lead to marijuana use disorder in susceptible teens.

Lastly, it’s worth considering the role of birth control pills and depression in adolescents. While the research does not seem to support a link between depression and use of the pill, many pill users report feeling depressed while taking it. So, if your teen is struggling with feelings of depression, it could be worth looking into a trial of discontinuing the pill to see if that improves mood.

Q: My general practitioner says that he thinks my son is suffering from depression and anxiety and is recommending an antidepressant. Where can I find out more about the positives and negatives of psychiatric drugs?

A: While there is plenty of information about psychiatric drugs on many websites, Mad in America has a guide for parents that offers an overview of how a diagnosis is made, which drugs are approved specifically for use with children and adolescents, the possible benefits and harms, and a link to a resource that discusses alternative means of treating anxiety and depression. This resource guide stresses that one of the most important steps in making a diagnosis is to determine if the person is experiencing mild, moderate, or severe depression. This distinction is important because the treatment guidelines vary for each category of depression. 

Depending on the source, some guidelines recommend antidepressants for all levels of depression—mild, moderate, and severe—and as a parent, you may have some questions about the use of drugs to treat depression. In 2004, because of widespread concerns about rising rates of suicide and suicidal ideation in youth, the FDA placed a backbox warning about the risks of both for children and adolescents. Some critics have said that the warnings actually increased suicide among youth rather than decreasing it. Robert Whitaker, the editor of Mad in America, analyzed the study critiquing the deprescribing practice and demonstrated that the opposite was true. From 2004 to 2007, the rate of suicide among young people actually declined, in part, because of people heeding the warning and choosing another form of treatment. Since 2007, both people seeking treatment and suicide rates have steadily increased.

In 2020, researcher Glen Spielmans and his colleagues revisited this controversy surrounding the black box warning and the rise in suicides. They published the results of their analysis in the journal Frontiers in Psychiatry and found the following: “Recent data suggests that increasing antidepressant prescriptions are related to more youth suicide attempts and more completed suicides among American children and adolescents.” 

A recent study of antidepressant effectiveness in children and adolescents, published in the Journal of Affective Disorders, concluded that “Currently approved antidepressants for children and adolescents with MDD [major depressive disorder] have small effect sizes, and many antidepressant trials in this population fail.” The same study concluded that as far as psychotherapy is concerned, it is “…moderately—or possibly even extremely—effective.” 

If you do decide to try a course of antidepressants for your child, the Mad in America website has a page where you can read about the adverse effects of psychiatric drugs so that you can keep a careful watch on any negative outcomes your child might experience. In addition, valuable information on all aspects of a given drug is available on the website drugs.com. And of course, you can consult the package insert and your doctor for information. 

Q: What are the alternatives to medication? Are they effective? 

A: You may be wondering what could help your child. Mad in America’s guide to non-drug therapies for depression lists many possibilities, including Cognitive Behavioral Therapy (CBT), exercise, and a healthy diet. 

CBT is a form of psychological therapy based on the belief that our thoughts, actions, and behaviors are all connected—“and that what we think and do affects the way we feel.” CBT has been proven to be effective with children, adolescents, and adults whether in-person, online, or in a self-help format. 

One way to think about CBT is to take a familiar thought-pattern that you have and look at how that thought impacts your behavior. A common thought-pattern is to magnify or minimize reactions and feelings, a form of all-or-nothing thinking. Thoughts like “I messed up that pitch, so the coach will bench me all season,” or “I came in 2nd place, but it was just dumb luck—I’m not that good, really.” By learning CBT, you can take a look at how those thoughts actually make you feel and act; conversely, by modifying your internal monologue, you can begin to take different actions that will help you to break a negative cycle. The book Feeling Great by David Burns gives you in-depth information about numerous thinking patterns and how to change them so that you can feel better about yourself.

Research points to exercise being beneficial in helping teens out of depression, especially when done three to five times a week for at least 30 minutes. Even short bursts of 10-15 minutes a few times a day can help lift your mood. Teens should be encouraged to choose something they enjoy doing—running, cycling, swimming, walking, or dancing are all great options and easily accessible for most people. The biggest step is to make a commitment to exercise on a regular basis and to be patient in waiting to see results.

Diet can also have a positive or negative effect on how we feel—too many carbs can make you feel sluggish, and too much sugar can boost you up and then drop you down just a few hours later. The key to a healthy diet seems to lie in following some general guidelines: limit processed and fatty foods, increase whole grains along with fruits and vegetables, and limit sugar. Following these tips may be challenging for teens who often love snacking and fast-food, but the benefits in how they will feel could outweigh the momentary sacrifices. 

Q: I’ve been hearing it can be hard to discontinue psychiatric drugs. Why is that and where can I find help for the process?

A: The process of discontinuing a drug is definitely something your physician should discuss with you as part of the informed consent/shared decision-making process. Many people can taper off of psychiatric drugs with few if any adverse effects once they have stabilized and gotten through a crisis period. But others may have a difficult time and need a much slower taper than the doctor recommends. 

What happens in the brain, particularly with selective serotonin reuptake inhibitors (SSRIs), such as Prozac, Zoloft, and Paxil, is that the brain becomes acclimated to higher levels of serotonin due to the action of the drugs, and it can take a long time for the brain chemistry to return to homeostasis. Few doctors have much training in discontinuing antidepressants, but fortunately, former antidepressant users have banded together to offer support to those wishing to discontinue medications. Two online organizations offer excellent support and guidance for tapering antidepressants safely so as to minimize or even avoid withdrawal symptoms: The Inner Compass Initiative and Surviving Antidepressants. Both organizations provide extensive information about tapering and offer peer support or group support. 

Q: My doctor is recommending that my child take two drugs. What are the dangers, risks, and potential harms of polypharmacy? 

A: According to a study published in Integrated Pharmacy Research and Practice, “Polypharmacy is defined as the practice of administering or using multiple medications concurrently for the treatment of one to several medical disorders.” The authors point out that as more and more drugs become approved for pediatric use, more children are placed on two or more medications at once. The problem arises because while the drugs are studied and approved in isolation, they are not studied in combination with one another, so the safety of such a practice is largely unknown. 

Polypharmacy is frequently practiced with psychiatric drugs where one drug may be prescribed to treat a certain condition—depression, for example—but the patient begins to experience adverse effects of the drug such as agitation, anxiety, and sleeplessness. Your doctor or psychiatrist may then prescribe a second drug to counteract those effects, such as an antianxiety drug like Ativan or Klonopin. 

One of the most useful tools for checking drug interactions—for any drugs prescribed in combination—is the website drugs.com. They have complete information on a wide range of drugs so you can look for adverse effects (side effects), and if you use the “Interaction Checker” feature, you can find out the possible problems of combining the drugs your child may be taking. The Interaction Checker will sometimes even recommend an alternate drug that may be safer in combination. With that kind of information, you can have a conversation with your doctor about alternative treatments.

Q: Can you offer me some reasons to feel hopeful about my child’s journey? 

A: Yes, depression is highly treatable, so you can expect a good outcome for your child with the right treatment and lots of encouragement and support. Keep in mind that depression arises for a number of reasons and takes time to fully show its negative effects. And healing from depression can take the same course. As your child builds new lifestyle habits over a period of time, they are building tools of resilience and they can expect to feel their mood lighten and find a renewed sense of confidence and hope. 

My daughter Eileen’s story might offer you some much-needed optimism. Eileen took Wellbutrin for several months as a teen, but she was able to taper off of it, and I was lucky enough to find a wonderful, caring therapist for her. Together, Eileen and her therapist worked on acknowledging her fears and building new thought and action habits that helped Eileen to move on successfully to high school, college, and a career. She has not taken any medication for many years, and even though her mood sometimes dips and she experiences rough patches, the tools that she learned about in therapy have helped her to place things in perspective and navigate life’s challenges with confidence. 

References

American Psychiatric Association PDF document. (2014). Patient Care Information. Retrieved from: https://www.psychiatry.org/File%20Library/Psychiatrists/Practice/Practice-Management/Starting-a-Practice/Online-Practice-Handbook/PatientCare-Informed-Consent.pdf

Aubrey, A. & Chatterjee, R. (2019, October 9). Changing Your Diet Can Help Tamp Down Depression, Boost Mood. Retrieved from: https://www.npr.org/sections/thesalt/2019/10/09/768665411/changing-your-diet-can-help-tamp-down-depression-boost-mood

Bogart, L. M. PhD. et al. (2014). Peer Victimization in Fifth Grade and Health in Tenth Grade. Pediatrics. 133 (3): 440–447. https://doi.org/10.1542/peds.2013-3510

Cathcart, S. (2019). Smartphones, Loneliness, and Depression in Teens. Mad in America. https://www.madinamerica.com/2019/10/smartphones-loneliness-depression-teens/

Centers for Disease Control and Prevention. (2021, September 8). What You Need to Know About Marijuana Use and Public Health. Retrieved from https://www.cdc.gov/marijuana/health-effects/teens.html

Childress, J.F., & Childress, M.D. (2020) What Does the Evolution From Informed Consent to Shared Decision Making Teach Us About Authority In American Health Care?. AMA Journal of Ethics, 22 (5): E423-429. doi.: 10.1001/amajethics.2020.423.

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Perry, B. & Winfrey, O. (2021). What Happened to You?: Conversations of Trauma, Resilience, and Healing. Flatiron Books. 

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