She called me at 4am her time.

It was December 10, 2019, I was in Tennessee on vacation and immediately was alarmed because my sister never called that early unless something was wrong.  She’d been in the hospital for a few days and I was hoping she had insomnia – the nurse induced kind because we all know nobody ever sleeps in a hospital. 

Jenn, my sister, had been fighting colon cancer for two years. She was already at stage 4 when she was diagnosed and the doctors told her that she would be on palliative care – basically, “we are going to keep you as comfortable as possible as long as we can” care.

She managed to get a virus or cold just after Thanksgiving and couldn’t stay hydrated, had a low-grade fever and a horrible rash.  She went to the hospital looking for relief and ended up admitted for a week.  Problem was that nobody could figure out what was wrong with her.

Now, this hospital wasn’t a partner with her oncology center (problem number one). They did their due diligence and ran a multitude of tests and, I’m assuming, completely ignored her disclosure that she had cancer as they weren’t even addressing the elephant in the room – bilirubin levels.

Jenn checked herself out AMA (against medical advice) a few days later and checked herself into her oncology hospital partner.  Care was immediately better but we seemed to be living in our own version of Groundhog Day.  Doctors came and went but nobody provided information.

Until I got home from Tennessee.

See, I am a cancer survivor. Unfortunately, it runs in our family – my great-grandparents passed from cancer, my maternal grandparents both died from lung cancer, my dad succumbed to Lymphoma, I was diagnosed with metastatic breast cancer in 2008 and my sister was diagnosed with colon cancer in 2017. Believe it or not, it is NOT genetic in our family.

What made the difference once I returned?  I became her patient advocate (pa).  I asked the questions nobody was asking.

Why You Need a Healthcare Advocate

Simply put, advocates add credibility.

You need to have an advocate when dealing with serious health issues because many times doctors just don’t listen.

Jenn would explain how she was tired all the time.  The doctor continually dismissed it because this single mother of three would go to work every day….because she DIDN’T have a choice.  But, when an advocate provides examples – a third party who has no vested interest in prescriptions or treatment, etc. – doctors tend to listen. Does this suck? Yes. Is it wrong? Yes. Does it happen? Absolutely.

I provided examples: “she used to go home and cook and have dinner with the kids; she used to run on the treadmill; she used to (insert whatever) and now she simply gets out of bed at the last possible minute, trudges through her work day and collapses in bed the minute she gets home.”

And the doctor took this “testimonial” seriously.

Provide Information

Another reason you need an advocate – information.  In our case, her doctors provided MORE information. Day after day she had been told “we will see how you are tomorrow”.  My question was “how with what?”. Not grammatically correct but does it matter?  “You will see how she is in regards to what?”.

And miraculously information started flowing.  In our case, it was hydration levels, pain levels, bilirubin levels – topics that either had not been discussed yet or she simply didn’t remember.  I was able to take notes in a notebook that detailed every metric, from blood pressure to bilirubin, to her catheter output. I was able to refer back to those notes during conversations with doctors and, most importantly, if a staff doctor contradicted the specialist.

Assist with Paperwork and Billing

Medical paperwork can be overwhelming when you are feeling 100%.  Think about the last time you had to fill out new patient forms.  You know you took a deep breath before diving into five or six pages and a myriad of health history questions. Having someone to help you fill out the paperwork, deal with billing issues, and enroll you in out-patient programs is invaluable.

Who is Your Advocate?

Fortunately, not everyone needs to be admitted to the hospital but, if you find yourself in that position, it will undoubtedly be a stressful time.  Predetermining WHO your advocate will be will ease your stress and allow you to focus on remaining calm. 

My sister knew all along it was me….not her husband, not our mom and that is why she initially called me and begged me to come home.  Because, in her words “she needed me”.  And she did.

Find the person who can speak for you, keep you calm yet advocate for YOU to ensure that you get the medical treatment you need.

xo,

Kristin