Posted by: sistermom1 | September 21, 2010

Becoming an Empowered Patient

My friend “J” sent me a copy of Elizabeth Cohen’s book, The Empowered Patient.  It has really made a difference in the way that I view my current life situation.  Especially after dealing with the home healthcare industry over the past few days, I have reached the conclusion that I need to be much more of an active participant in the coordination of my healthcare.

 I need to share my experience over the past week.  My neurologist recommended a 5-day in-home steroid infusion to combat the exacerbation I am having.  I have had one before, and was comfortable with the protocol.  I received a call on Monday from the company providing the service, informing me that a nurse would call me that evening or the next morning to schedule an appointment. 

The next day passed without a call.  Mid-morning on Wednesday, the nurse called to tell me she was on her way to get things started.  I did have a conflict (life with a family!) and could not meet her.  She immediately asked me what the other appointment was, and why I could not change it.  I hesitated, but held my tongue, as she was late in calling me – and it was to schedule a meeting, not to conduct one.  Her tone seemed irritated, which I ignored and confirmed an appointment for 10:30 the next day.  She emphasized that it needed to be in the morning for the best reaction to the infusion. 

The next day, I received a message from her at 11:30 stating that she would arrive by noon (no apology for the delay).  At 12:15 I called her to ask when she planned to arrive.  She informed me that traffic was making it difficult to predict, and that she was “sure you are familiar with the traffic in this area”.  Then I got disturbed and said: “We can do this two ways – I can call your supervisor to complain, or we can figure this out like two rational adults.”   She seemed truly surprised by my response and told me that she was unaware that she was coming across negatively.  I confirmed that she indeed was, and suggested we begin again. 

When she finally arrived, she was accompanied by a trainee, who was very sweet, accommodating, and energetic.  The appointment did go pretty well, and the IV got started fairly easily (although she did have to stick me twice to get it in successfully (perhaps a response to my bad attitude?)

On day three, the IV jammed and my arm started swelling.  I did not even want to call the nurse, but I was in such pain, that I had no choice.  (I told you this would be short…I guess I am still working it out…)  She responded with “I thought you were infusing in the morning — what happened?”  After catching my breath, she promised to send another nurse and asked me to stop infusing and take the IV out of my arm.  (A painful operation as both my husband and I tend to be a bit squeamish, but we did it!)

Another nurse arrived within an hour.  She was absolutely lovely.  She spoke with me in detail about what happened, walked me through what I might expect to see/need over the next few days, and re-started the IV in my other arm.  Things went much better, and I completed the series without another problem.

In the past, I would have just let this whole incident go without a comment.  After all, the nurse is a professional who knows a lot more than I do about this, and I was probably being a baby aboout the whole thing (remember, I am a diva!)  But after reading The Empowered Patient, I have started thinking differently about my role as a patient and consumer of health services.  If I had had this experience in a Nordstrom’s or Bloomingdale’s, or even a TJ Maxx, I would have immediately complained to the Manager and gotten some form of relief.  Why did I not feel the same way about something so much more important — my own healthcare?

In her book, Ms. Cohen recommends being a “bad patient”as the best way to get solid medical care.  She shares three golden rules of being a bad patient: 1) Ask lots of questions; 2) Don’t worry whether your doctor likes you; and 3) Remember that this is a business transaction.  This really helped me when facing this situation with this nurse.  I did complain to her Branch Manager, providing honest and complete feedback on my experience, for which she thanked me and apologized.  I really did feel better (more empowered perhaps?) after speaking with her — like I had taken the reins of a runaway horse in my own hand and slowed down the wagon to a reasonable pace. 

Today, I am beginning to feel better.  I continue to manage my healthcare – much differently than I have in the past, informed by Ms. Cohen’s wonderful book.  I will let you know what happens…



  1. Dear SisterMom1

    You Go Girl! Sounds like you are well on your way to becoming an
    “Empowered Patient”!

    They don’t have to like you but they do have to
    provide they service you are paying for and they have
    To do it in a timely and professional manner
    Or you complain and ask your healthcare provider
    to withhold payment for incomplete service!

    The next step is looking up thee names
    And contact information of hospital administrators,
    hospital board of directors,healthcare insurance
    board of directors and do not hestitate to contact
    The and share the feedback or complain or compliment!
    Trust me- it works BIGTIME!


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