Patient Advocate

Out of the blue today, Lynn asked me to write about advocacy. He said, “please stress to your readers the importance of having an advocate or being one for yourself,” so here goes.

When Lynn and I first got married, we were both VERY independent.  Both of us had been married before and both of us had learned to survive as single parents and single individuals.

Therefore, unless we needed someone to drive us home after a procedure, we never accompanied one another to medical appointments. That was fine at first but then I became very frustrated with that approach because Lynn’s approach to health care is “the less I know the better” or “ignore it and it will go away.”  Mine, on the other hand, is “tell me absolutely everything, give me a copy of every medical report you receive, and where can I get more information?”  Therefore, as I began to notice more and more often, symptoms that, to me, signaled MS, I began to ask more and more, “what did your doctor say?”  The answer was always the same, “I’m fine.”

Finally, after one intense discussion around this factor, I announced that the next time he went to ANY doctor, I was going, too.  I’m glad I did.  I sat silently to the side and listened as the doctor asked Lynn how he was doing.  His response was, “Fine, if I was any better I could not stand myself.” Knowing that doctors do not have x-ray eyes and cannot read minds, I spoke up and said that wasn’t exactly correct. So began, my role as MS Caregiver, and patient advocate.

Initially, Lynn continued to have a hands-off attitude.  He told me he didn’t want to know anything other than what he had to know to get by day by day. When I would be reading about MS or looking at something on the internet about it, he would turn his head as he walked by.  This attitude continued until his second admission to the hospital.

Lynn’s first hospital admission was pretty serious.  His body temperature dropped so low it could not have sustained his life for long.  That was due to aspiration pneumonia which occurred when he coughed up a nasogastric tube through which he was getting a tube feeding and the feeding went into his lungs. He was actually too sick during this admission to participating in his own decision-making so I stayed with him 24/7 and did it for him.  I was present whenever the medical team visited and I asked hundreds of questions to make sure I understood what was going on and what it all meant.

Then on his second hospital admission, he learned for himself that he needed to speak up on his own behalf.  Lynn’s diaphragm was weak; whether from an MS exacerbation or the intrathecal baclofen dose being too high and making the muscle weak. There was a period when I expected him to be put on a ventilator at any moment.  Thanks to prayer and a good medical team, we avoided that but when he became more alert, he started taking a more active role in the decision-making.  He was convinced he was NOT having an exacerbation so he refused the IV steroids.  There was one doctor in particular who kept insisting he had to go on steroids and he flatly refused to do so.  He insisted the baclofen dosage be adjusted and that, along with some aggressive pulmonary care, helped him to overcome the respiratory depression he was having and be able to leave the hospital.

During that admission, he had difficulty talking because he had limited oxygen and had to wear an oxygen face mask all the time.  Often the doctors would assume he was going to go along with what they wanted and would not wait to hear him out.  However, I learned to read his signals and would at times, block the doorway and say, “he wants to say something to you, listen.”  They would apologize and indeed listen.  Sometimes they just get too busy to slow down and listen to the patient and you have to force the issue.

That’s what patient advocacy is all about…making sure your opinions are known and heard.  Healthcare professionals can be intimidating.  They are trained to be very confident in their decisions and in deciding what is best for someone; they have to be so that they will have the courage to do what has to be done. However, sometimes they have a hard time turning that off.  That’s when you have to speak up.  You know your own body and how your body reacts to situations.  In much the same way, you know the body and the reactions of the person you care for.

As a caregiver, you can often spot changes that even the patient doesn’t notice.  I’ve intervened in Lynn’s care several times and having done so, prevent a great deal of pain and suffering for him. You won’t always know the answers but listen to your gut instinct when you feel something’s wrong.

…and be a pest if that’s what it takes. 

Don’t be abrasive or rude; that will backfire.  No one likes to be bullied or threatened so don’t go there but be persistent.  Keep asking for an explanation and pointing out discrepancies until you’re satisfied that what you know is being considered. I’m not saying to always disagree with the medical team or to insist for the sake of insisting, but just make sure you’ve heard and your opinion is considered.  Get a second or third opinion if necessary, but always look out for your loved one like a mother bear watches over her cubs.  It’s just one more essential role of being a caregiver.