My teenage son has bipolar disorder. My husband and I want him to be ready to manage his care and treatment decisions, so we’re engaging him now.
I try to be well-rounded and active about mental health. I engage with my elected representatives to try to affect policy; speak out to combat the stigma of mental illness; help others as a peer advocate; and, as the parent of a teen with bipolar disorder, I keep up to date about treatment and new developments in the field.
Living in a rural area, it has been challenging at times to get help. Our local hospital has no child psychiatrist on call; sometimes, even an adult psychiatrist is not available. There is no nearby facility that offers the mental health services we need. Under circumstances like these, with no local help and the likelihood of traveling miles to receive care from unfamiliar providers in unfamiliar places, we really need to plan ahead.
We also know that we are approaching a pivotal moment in our son’s life and care: the day that he turns 18 and claims his legal independence. On that day, my husband and I will lose the ability to direct his medical decisions, which is why we have been working already – at age 14 – to make medical decisions with him instead of for him. We believe the best way for us to do that is to educate him about bipolar disorder, foster respect and trust in our relationship, and work with him to have a psychiatric advance directive (PAD) in place when he reaches legal adulthood.
To prepare for that time, my husband and I have consciously engaged our son in learning about his bipolar disorder so that he understands his diagnosis and will be able, eventually, to take over directing his own care. We talk about issues like what he wants – and doesn’t want – in a therapist and how to find one. We discuss the “why” and “what” of each of his medications, so he can understand the medical aspects of treatment.
Through our communications with him, we are developing the framework for the advance directive as a family. We see the PAD as the vehicle to let the doctors and the care team know what they should know in the event that he can’t communicate effectively. If a crisis ever hits, my family wants to be prepared for it. We are working to plan for any eventuality, including a visit to the emergency department. We have taken a trip to the hospital ER so that our son could physically be in the space and have a sense of what would happen if he were to be there for a crisis situation, and make informed choices about what he would want. Each contingency needs to be considered, discussed, and included in the directive, planning not only what the clinicians will do, but also so that my husband and I are clear on what our son expects of us as well. Not only will we benefit through being able to advocate for him according to his preferences, the PAD also serves his need for predictability and certainty.
Around the same time, our son will be starting college, and we’ve already been thinking about that, too. I know that I’ll be working to make sure that mental health care is part of his orientation process, including visiting the clinic and meeting the staff. As a college professor who is involved with redesigning the first-year experience on my campus, I’m advocating for the inclusion of mental health orientation and support for all new students. My hope is that this will help foster more open conversations about mental health and treatment, conversations that can include discussions of PADs and their benefits for these young adults and their families.
There are many aspects of the mental health care system that need improvement, such as providing children with better access to care; alleviating the shortage of child and adolescent psychiatrists; ensuring the enforcement of mental health parity; reforming the profoundly unfair treatment of people with mental health conditions in the criminal justice system; and better equipping emergency departments to manage psychiatric emergencies, to name a few. The stigma around mental illness remains one of the biggest barriers to treatment. Unfortunately, there is a lack of political will to support the individuals and families affected by mood disorders and other mental health conditions. I am disappointed that so many elected officials treat mental health care as a partisan issue, and they seem to prioritize toeing the party line over serving the quality of life – even life and death – needs of their constituents.
So I work to destigmatize mental health conditions, advocate to improve public policy around mental health care, and support peer families in their mental health challenges. But all of that is part of the bigger picture. For our family and for our son in particular, the psychiatric advance directive will provide him with a better chance to control his own care and for us to support his preferences.
- What have you done to help your children be prepared to make their own treatment decisions?
- How will you know what your children – especially those who are age 18 or older – expect you to do for them in a psychiatric emergency?
Kristin Olbertson is the mother of three children, one of whom has been diagnosed with bipolar disorder. In addition to her advocacy work on behalf of children’s mental health, she teaches American history and legal history at Alma College.