Everyone Needs a Healthcare Advocate

by Joanna Smith on Nov 18, 2011

It took me a few moments to realize what was happening in the first floor bathroom of the Children’s’ Hospital.  A very exasperated Mother was having a one-way conversation with her son who was behind a locked stall door.  She was pleading with him to come out so he would not be late for his appointment at the clinic.  His only answer:  “I have to go.  Now.”  In frustration, she asked me if I would watch her son while she went to tell the clinic that he would be late for his tests–again.  She exited the door, and all was suddenly very quiet in the bathroom.

Feeling the way carefully, I said “I bet you don’t like going for tests at the clinic”.  There was a long pause.  Then a small voice said “I don’t know what they’re going to do and I don’t know if it will hurt”.   Choosing my words carefully, I said “you know—those are really good questions to ask.  You’ve been thinking about this for a while, I can see.  The very best people to answer those questions are the doctor and nurse at the clinic and your Mom.  I do know you can’t get answers if you stay in here.  Would you come out so you can get those questions answered?”

A very long pause, with no sound, and then the sound of the lock clicking as he opened the door and came out.  He was small, very thin, and very scared.  “Will you tell my Mom?” he asked.  “Will you tell her the questions?” “We will tell her together” I replied.

At that moment, his Mom returned from the clinic.  She looked from him to me in astonishment.  “What did you do?”  she asked.  “I couldn’t get him to come out.”  I told her about our conversation as we all walked to the elevator.  I knelt down and looked at him and the worry lines on his face.  “You have very good questions: keep asking them” I said.  “Tell you Mom, the doctor and the nurse your questions; that way you’ll be sure to get them answered.”

I did not understand, years ago, when I encountered this little boy that he would open my eyes to a simple concept:  everyone needs a healthcare advocate.  No matter what the situation, there are times when whatever is going to happen medically seems too overwhelming, too scary and too filled with questions.  At that time, people—children and adults—need someone by their side to help make sure they understand what is happening, the choices and medical decisions to make or the incomprehensible hospital bill or insurance papers.  Frequently a family needs someone to help them grapple with a life-threatening illness.  This is the world of healthcare advocacy.

I began my practice in 2005, offering services to people of all ages.  A family with a child newly diagnosed with juvenile rheumatoid arthritis; a 40-year old considering treatments for MS; a senior try to live out her life at home rather than in assisted living.  The complexities of in-patient and out-patient care were the situations my clients came to me for help with.  I worked with diverse populations: most people could pay for services, some I worked with pro-bono.  A number of families from out-of-state contacted me to work with their family member who was in-state and on Medi-Cal.

Everyone wanted someone who could follow them or their family member everywhere they went, in-patient and out-patient, and make sure that the treatment plans made sense and their wishes were being followed.  This is exactly where we are today:  everyone who hears about the services of a Healthcare Advocate wants to work with one because medicine is so complex and will not be getting any easier in the future.  Treatment decisions are more complicated; insurance is more baffling; communication within the world of healthcare is often more fragmented, even with electronic medical records, and uncoordinated.  Most people still do not understand that their primary care physician will not follow them into the hospital if they need that level of care.  Healthcare Advocates provide the “Three Cs”:  consistency, continuity and collaboration.  And these days, those “three Cs” are the keys to receiving the best care possible in medicine.