Why Shared Decision Making With Young People Diagnosed With Psychosis?

Shared decision making (SDM) is important when working with adolescents and young adults because it helps them develop decision making skills as well as other skills needed for being an active member of the care team.  It insures young folks will have a voice and a choice in decisions that affect their lives. 

When working with young people, clinical teams must communicate that recovery is real and that there is hope for a full and meaningful life after a diagnosis. One way we can communicate hope is through the practice of SDM. 

When practicing SDM, we invite young people to consider their options and to reflect on what matters to them. In effect, we invite them to consider an array of possible futures. And when there are pathways into possible futures, there is hope for recovery. For example, when using SDM to explore school options, a young person must begin to imagine a variety of possible futures, such as taking an English Composition course at a local community college or doing an HVAC apprenticeship at the local technical school.  Similarly, when using SDM to explore medication tradeoffs, a young person might imagine a future of not taking medicine but living with symptoms or taking medicine but living with side effects.

In addition to conveying hope for a meaningful future through exploration of options, the practice of SDM also helps young people develop skills that will help them successfully navigate behavioral health services if needed in the future. SDM: 

  • Invites young people to speak up during consultations. This helps develop self- advocacy skills.
  • Encourages young folks to engage as active partners with the care team. This is important because increased engagement is associated with better health outcomes.
  • Affirms individual dignity because people have a voice and a choice in their care.
  • Helps people feel more in control, thereby supporting the emerging autonomy and self-direction of young people.

There is another important benefit of SDM when used by teams serving young people with early psychosis.  SDM helps the team work more collaboratively during periods of medication discontinuation. Coming to the decision to use or not use psychiatric medicine is typically a long and complex journey that involves trying medications, making trade-offs and sometimes even rejecting meds. The framework of compliance/non-compliance, oversimplifies the important deliberations that occur as young people grapple with the pros and cons, and benefits and risks of using psych meds.

Unlike the head-butting that so often characterizes compliance discussions, SDM is a respectful way of walking with young people on their journey to discover if and how medicine will support their recovery.  It does this by opening a third important option between using medicine and not using medicine.  This third option is called watchful waiting.

When a young person is choosing not to use psychiatric medications, the team can introduce the option of watchful waiting.  Putting a time limit around the period of watchful waiting can be helpful.  For instance, the shared decision might be to reduce a dosage or discontinue a medication for a month and then check back in to assess how things are going.

Instead of “doing nothing” during a period of med discontinuation, the young person, family and team can actively monitor what happens during a period of watchful waiting. 

  • Does distress get worse, improve or remain the same?
  • Do relationships get more stressful, improve, or stay the same?
  • What happens to the young person’s ability to keep up with responsibilities during a period of watchful waiting?

A symptom tracking calendar can help organize these observations. Additionally, teams can encourage the young person to designate a trusted friend or family member who is willing to share observations during the period of watchful waiting.

There are two other important considerations when using SDM with young people.  The first is that cognitive processes associated with decision making are still developing in younger adolescents.  The second related factor is that family or guardians often attend appointments with minors, leading to what is called triadic decision making or patient-provider-parent triads.

The literature on SDM with young people and family members is sparse when compared to what we know about adults[1].  The literature we do have suggests the following[2]:

  • Adopting a developmental perspective on decision making is prudent. As young people develop autonomy in other areas of their lives, they will seek increased autonomy in healthcare decisions as well.  However, despite their growing autonomy, several studies of young people with long-term health conditions have found that parental involvement in decision making is still viewed as desirable by many. 
  • Young people want to be involved in decision making, even if they do not make the final decision. Compared to decisions about surgery, young people have a much higher preference for involvement in decisions about medicine, including whether or not to use it, route of administration, dosing and the like.
  • In qualitative studies young people complain of being left out of decisions or being talked about like they are not even in the room. It is important to direct comments and share information with young people and to solicit their opinions, preferences and thoughts, even when parents are in the room.
  • Parents sometimes try to limit information, especially about the risks of treatment. Young people with health conditions want information and are interested in talking with other young people who share similar life challenges. Use of the internet to gather information should be supported and teams should help young folks access credible information and decision aids when possible.
  • When it comes to factors that influence decision making, data suggest that parents tend to focus on long term risks and outcomes. However, young people tend to focus on short term quality of life factors, particularly side effects. 

It’s not always easy to reconcile the decisions that young people and their families make.  The Ottawa Family Decision Guide is a great tool to ensure that both the parent/guardian and the young person have a chance to review options and share what matters most with the team. 

In closing, there is no doubt that SDM is a critically important approach for teams working with young people and their families. The practice of SDM should be widely adopted by coordinated specialty care teams serving young folks diagnosed with early psychosis.

 

[1] Lipstein EA, Dodds CM, Lovell DJ, Denson LA, Britto MT (2014). Making decision about chronic disease treatment: a comparison of parents and their adolescent children. Health   Expectations, 1-11.

[2] Knapp C, Madden V, Feeg V, Huang IC, Shenkman E (2008). Decision making experiences of adolescents enrolled in children’s medical services network. http://www.floridahealth.gov/alternatesites/cms-kids/home/resources/documents/adolescent_sdm.pdf