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.

Advocacy for Everyone

by Joanna Smith on Jan 25, 2011

Healthcare Liaison has a training and Credentialing Program specifically for medical professionals who want to be certified as healthcare advocates.  A class of seven just passed their certification exams, and they are now running their own businesses as Certified Healthcare Advocates.  You can see them–and see if one of them is in your area–by going to www.healthcareliaison.com/advocates.html .

Each time a group graduates, I am struck by how many people want to go specifically into the field of eldercare advocacy.  While it is true that the population is “graying” as baby boomers enter their retirement years, I constantly wonder about how young families with children with life-threatening illnesses manage to navigate our complex system.  I puzzle about there are many advocates who want to work with the elderly, but few who want to work with children and families:  after all, it’s not just seniors who are confused and overwhelmed by healthcare; it’s everyone.  It is one of the aspects that I most love about how I work:  I have clients of all ages and it keeps me focused on the entire range of healthcare, not just one age group.  I love working with seniors, and I love working with other age groups as well.

I have thought about this a lot because one of the populations I like working with is families with children who have complex medical conditions. Somehow, I think, there is a belief, even in medical systems, that young children and families don’t need help navigating through a medical crisis because the medical system takes care of them through the concept of “Medical Home” and there’s no need for more help.  I know, however, from watching parents with a sick child in the intensive care unit, or a family struggling with a child’s diagnosis of leukemia, that there is a need.  What kinds of services can I offer those families?

  • Help in formulating their questions to ask the medical team
  • Explanations of what is happening
  • Assistance with complex decision-making about treatment options
  • Support for second or third opinions
  • Guidance with decision-making
  • Help with managing family and friends
  • Following the family through the entire range of care
  • Insurance company assistance

My concern with healthcare advocates and the emerging profession is that advocates will specialize too quickly without first having a solid background in working with all age groups.  I think an advocate is a better advocate when they choose breadth first and then narrow to a specialty.