CPN | Understanding Baseline

Understanding Baseline

Understanding “Baseline” and

How it Helps Frame Decision-Making for Your Child’s Care

I. Illness Trajectory and Baseline

Some diagnoses have a projected trajectory and you can anticipate how your child’s issues and complications are going to go. Others do not, and parents and doctors cannot project lifespan or how the child’s condition is going to progress. Regardless, there are always ups and downs along the way and living with a child with a life limiting illness is an exercise in accepting uncertainty.  

Baseline is really just a technical term for “the new normal” – it is the opposite of an acute moment or event. It is where things are when they are stable. With children living with illness, the baseline shifts, and often it shifts down over time like steps, where each lower step represents a lower level of functioning. While the Ups and Downs continue, the Ups are, over time, not as high as they were and the Downs are lower. With a declining baseline, the final step is end-of-life.

II. Why Understanding Baseline Can Help

Understanding this notion of baseline can be helpful as a way to look at how your child’s condition is progressing and whether it is declining. As your child’s health declines and their health care needs become more complex, the decisions can become more complicated and your priorities for your child may shift. Understanding baseline and how it is changing can help you think about and prepare for those points, especially in terms of thinking about what your goals of care are for your child at each new level. As baseline shifts, you (and your child) may redefine the goals of care.

“My child’s new normal looks different than it did a year ago. She can no longer go to school. What matters most to us now is  ….. “

Understanding your child’s “new baseline” will also help you think about what choices you will make, including for medical interventions, to achieve those goals.

“My child is now aspirating often when she eats and is having an increasing number of aspiration pneumonias. In the context of her prognosis, what are our goals for her at this point? How important is feeding orally to her? Given her life-expectancy and our goals of care, would a feeding tube help us achieve those goals?”

A shift in your child’s overall health can creep up on you slowly or it can be masked by an acute event.   The next page shows the three classic patterns of illness trajectories.

Steady Decline.

  • A malignancy or degenerative disorder. Children who had been in good health until the disease or condition begins to cause a steady and irreversible decline in quality of life.
  • The goal of palliative care in these instances is to maximize quality of life for as long as possible.
Fluctuating Decline.

  • Malignancies that enter remission and then relapse such as cancer; cystic fibrosis; metabolic disorders that cause lasting injury with each episode.
  • The pace of decline after the onset of the condition varies; the child has episodes of worsening health followed by periods of relative recovery, followed by bad health, and each recovery is not to the same level of normal as the child was before.
  • The goal of palliative care is to maximize quality of life and focus on the child and family’s goals, such as going to school or being at home.

  • Fragile health and vulnerable to recurring health crises, often triggered by outside events such as the common cold. Families live in a constant state of anticipating the next crisis or setback.
  • It is harder to determine when the child’s quality of life is not acceptable to the child or family.
  • Some children with neurological conditions that are not progressively degenerative, such as a static encephalopathy, fall into this category. As the child ages the brain is not able to keep pace with physical growth and complexity increases.
Feudtner C. Collaborative Communication in Pediatric Palliative Care: A Foundation for Problem-Solving and Decision-Making Pediatric Clinics of North America. 54 (2007) 583–607


III. Reviewing Your Child’s Health Trajectory

A shift in your child’s overall health can creep up on you slowly or it can be masked by an acute event. Parents often don’t notice changes in their child’s physical or cognitive abilities until well after they have changed, which in many ways is a beautiful and merciful thing.

But it can be helpful to periodically pause and take a step back to ask yourself what, if anything, has changed, and to do this work with your child’s medical team. Questions to consider are:

  • How does my child’s health compare this month to 6 months ago and 1 year ago?
  • If my child’s health has declined, would you estimate that it has declined by 25%, 50%, or more than 50%?
  • After an illness, does my child return to the same baseline?
  • What percent of each day, on average, is my child comfortable and happy?
  • How does that compare to 12 months ago?
  • What percent of each day, on average, is my child uncomfortable or unhappy, and how does that compare to 12 months ago?
  • How often has my child been sick in the past 6 months and how does that compare to 12 months ago and 2 years ago?
  • How does my child appear in photos or videos from 1 year ago?
  • Is my child sleeping more?
  • Is my child able to participate in the activities that they enjoy?
  • Has my family and household recently made many adjustments to accommodate my child’s changing needs?

Source: Julie Hauer, MD

IV. Using baseline to help make decisions:  redefining goals and medical interventions

Each shift in baseline comes with its own challenges, including sadness as you adapt to the loss of what was. Each shift is also an opportunity for your family to figure out what your new goals are, what quality of life means now, and to focus on achieving those goals.

For example: “My child can no longer go to school. Our goal now is to keep her comfortable at home and have as many friends visit as possible.”

In the event of an acute event in your child’s health, here are some things to discuss with your child’s medical team to help you think about where your child is in the illness trajectory.  While difficult conversations can feel painful in the moment, they are important in helping you consider what is best for your child’s care in the moment and looking ahead.  

  • What was my child’s quality of life before this episode?
  • If my child survives this acute episode, what will it take for him/her to recover? Will that require a lot of medical intervention, such as intubation, and how do we feel about that?
  • After my child’s recovery is ‘complete’ and s/he is at a new baseline, what will this new baseline be? What are our goals of care at this new point?
  • How severe are future crises likely to be and what will it take to keep my child comfortable?

And if you are evaluating a medical intervention, here are some questions to ask your child’s medical provider:

  • Will this surgery/intervention impact other body systems? (spinal surgery, feed tube, etc.)
  • How will his/her overall health affect the recovery time of this procedure?
  • What will our new baseline look like?
  • What is the trajectory if we elect not to have this procedure?
  • Will this test help us find an effective solution?

As baseline shifts, it can be helpful to share your new care goals with friends and family so they understand what is important to you in this new place

  • Our hope for our child is ______
  • We could use your support in ______________
  • It is our priority that he/she continues to be able to________