Sharing in Decision-Making Exceptional Kids

By on Aug 7, 2018 in Uncategorized | 0 comments

Ruchi Kaushik, MD, MPH

July 14, 2018


Have you gone to see your child’s doctor with one plan in your head and left with a completely different one–a care plan that was created without an opportunity for you to voice your ideas, concerns or goals?  Pediatricians believe they are scientists who are most knowledgeable in the care of a child (and, indeed, they are), and parents believe they are loving, nurturing caregivers who are most knowledgeable in the care of THEIR child (and, indeed, they are).  In my opinion, this is a win-win.  Working as a team, parents (and many older, more cognitively able children) and pediatricians can create an effective, realistic, and evidence-based care plan to benefit a child using a process known as shared decision-making.


According to the American Academy of Pediatrics (AAP) is a process in which:


The collaborated effort should fall somewhere between your pediatrician developing a plan on her own (“paternalism”) and your pediatrician giving in to your plan (“consumerism”).  Following are a few things you should look out for during your visit.


Time:  Decisions that involve caring for children with disabilities and complexity are challenging and should not be rushed.  You should feel that the discussion is being given the appropriate amount of time.


What is the issue and who is involved:  Someone (preferably your pediatrician) should point out the fact that you have come to a point where a decision needs to be made.  And all parties involved should feel they have the opportunity to share their views and concerns–parents/caregivers, adolescents who are capable, and your pediatrician and pediatric subspecialists;  however, this may ALSO include family members whose opinions the parents/caregivers value, private duty nurses and home health therapists who can contribute constructively to the converstion, and religious leaders.  Because of the long list of individuals, at times a care conference may need to be held to entertain all ideas in a single discussion.


Needs, Wants, and Goals:  Take advantage of open-ended questions such as, “Tell me more…” “What do you understand about…?”, and “Why would you prefer this option?”  These are not meant to question you, but, rather, for your pediatrician to understand what you value.  You may prefer to have therapists provide care in your home instead of in an outpatient setting because your work hours don’t allow the latter (needs); or you may prefer that most tube feeding calories are administered through the night so you can focus on (and enjoy) oral feeding during the day (wants); or you may want to find the sweet spot of seizure medication dosing so that your child isn’t seizing often and is also alert enough to participate in physical therapy aimed at weight-bearing and standing independently (goals).  Don’t hesitate to share these, because we truly need and want to know.


Options:  Once your needs, wants, and goals are heard, you should be given evidence-based options to move forward (occasionally, there may be only one realistic option).  The risks and benefits of each option should be shared with you, and your pediatrician should check in with you regularly throughout the collaboration to make sure you understand everything correctly.  This is when you have the opportunity to state why one option may not be realistic or may work with modification (negotiation).


Care Plan:  When everyone has had a chance to share, an effective, realistic, and evidence-based decision can be made.  The plan should be documented and given to you (either on paper or through your patient portal) and new orders should be sent to your home health (private duty nursing, therapy) agencies.  An open door policy should be in place, allowing you to return in follow-up and discuss the issue again as necessary.


For more information, visit healthychildren.org.  If you believe your child is eligible to see a complex care pediatrician and are looking for a medical home, please call 210-704-4966.


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