Editor’s Note: Patient Worthy is proud to share this article from our friends at the Courageous Parents Network.
A parent often can sense when there has been a shift in their child’s overall health. In fact, they will likely notice certain changes before clinicians do. In a child with a serious medical condition these shifts may be significant, or the result of an acute event, which makes them easier to notice. Other times the change is subtle. It may creep in slowly, building until the change is notable. When the change seems to be constant, or permanent, clinicians may refer to the child’s new status as a shift in baseline. Baseline is their point of comparison as changes occur. It is the starting point that is used to measure physical, developmental and mental health.
Being able to describe these shifts makes the parent an important member of the care team. But while the parent takes pride in their expertise, the changes may bring about new, or more intense, feelings of sadness or grief. Identifying and talking about these changes makes everything more real—and, sometimes, painful or even scary. It’s hard not to see the shifts and to consider what the future may bring. However, many parents say that as they share their knowledge and the medical team shares their assessments, they find ways to adjust and even anticipate more change to come.
Tracking Baseline
The medical team may ask you to keep track of your impressions of your child’s conditions over time. Whether or not you are asked to do this, it can be helpful to journal about your child’s journey, with notes about what you see. You might periodically pause and take a step back to ask yourself what, if anything, has changed. It can be extremely helpful to do this work with your child’s medical team—or to answer the questions individually and then compare notes.
Baseline and Goals of Care
Being aware of your child’s baseline can be a helpful tool when it comes to making decisions about treatment options, especially in acute situations. Each shift presents an opportunity for your family to consider what quality of life means now, what your priorities are and whether you should reconsider your goals, and how you might focus on achieving those goals. You may not always have a great deal of time to reflect on what feels right and what might work. Acute events, for example, may bring on the need to make quick (and possibly difficult) decisions. Here, understanding baseline is really one of your best tools for identifying options and guiding choices.
The Courageous Parents Network’s free downloadable guide “Understanding Baseline” offers a comprehensive view of this topic for parents and clinicians. Please visit CourageousParentsNetwork.org for the guide and more resources on this topic.
*Source: Julie Hauer, MD, Pediatric Medical Director, Seven Hills Foundation, Worcester, MA
UNDERSTANDING BASELINE
A parent often can sense when there has been a shift in their child’s overall health–and certain changes before clinicians do. In a child with a serious medical condition these shifts may be significant, or the result of an acute event. Other times the change is subtle. It may creep in slowly, building until it is notable. When the change seems to be constant, or permanent, clinicians may refer to the child’s new status as a shift in baseline. Baseline is their point of comparison as changes occur. It is the starting point that is used to measure physical, developmental and mental health.
There may be ups and downs in the baseline. Over time the ups are not as high as they once were, and the downs are usually lower. Being able to describe the shifts makes the parent an important member of the care team. But while they may take pride in their expertise, identifying and talking about the changes makes everything more real. It can be very hard not to see the downshifts and to consider what the future may bring.
Tracking Baseline
It can be helpful to journal about your child’s journey, with notes about what you see. The medical team also may ask you to keep track of your impressions of your child’s conditions over time. You might periodically pause and consider what, if anything, has changed (for example: sleeping patterns, comfort level, ability to participate in activities). It can be helpful to do this work with your child’s medical team—or to answer the questions individually, and then compare notes. Some parents find that these conversations help them to adjust and even anticipate more change to come.
Baseline and Goals of Care
Being aware of your child’s baseline can be a helpful tool when it comes to making decisions about treatment options, especially in acute situations. Each shift presents an opportunity for your family to consider what quality of life means now, what your priorities are and whether you should reconsider your goals, and how you might focus on achieving those goals. You may not always have a great deal of time to reflect on what feels right and what might work. Acute events, for example, may bring on the need to make quick (and difficult) decisions. Here, understanding baseline is really one of your best tools for identifying options and guiding choices.
The Courageous Parents Network’s free downloadable guide “Understanding Baseline” offers a comprehensive view of this topic for parents and clinicians. Please visit CourageousParentsNetwork.org for the guide and more resources on this topic.
