Friday, August 30, 2013

How to be a medical advocate (or “Does the squeaky wheel really get the grease?”)

As any of you who follow me know, my mom has spent most of this summer in the hospital recovering from several brain surgeries due to bleeds and aneurysms. It’s been a hell of a summer and one I’m sure no one in my family bargained for or wants to go through again. However, I have to say that most of us rallied together to be there for my mom, my dad and each other throughout her hospital stay and even now, as she makes the transition to a skilled care facility.

What we didn’t bargain for, however, was the incredibly disappointing, disheartening, sub par and borderline unethical basic care my mom received after her surgery as well as the ridiculous lack of communication between the staff and supervisors of OSF Saint Francis Medical Center and the Illinois Neurological Institute Rehabilitation Services and my family. 

Let me set the stage for you. My mom is 78, and upon admission to the hospital (the first and third time) was pretty well aware of what was going on. My 82-year old dad could not have been more supportive or doting and spent entirely TOO much time by her bedside, making sure she was comfortable, well-tended to and honestly just not really wanting to go home to an empty house. My sister is a nurse with more than 30 years of experience in a number of fields (now oncology.) I am my mother’s daughter – the writer who is sometimes a bit too outspoken and very bad at hiding my feelings. My brother is a lawyer out on the East Coast.

Now by the looks of it, we’re set up to be “that family.” Those squeaky wheels that try to make things happen just the way they want them. But honestly, we went into this with complete trust in the healthcare system and processes, and simply tried to make sure we had as much information as possible and ask all the right questions before important decisions were made. We were lauded for being a great “support system” for my mom, and even voted “most entertaining family in the ICU.” That was in the beginning.

At the end of this ride, I’m sure they couldn’t get us out the door fast enough. We were the troublemakers. The ones who asked too many questions and had too many demands. The ones who showed up at the nurses’ station right at shift change. The ones who made the phone calls, wrote the letters and called the meetings. Yep, we became “that family.” 

Unfortunately, we HAD to. Because this stellar institution where my mom received her care – OSF Saint Francis Medical Center and the Illinois Neurological Institute Rehabilitation floor - this hospital that preaches their mission as “to serve with the greatest care and love” – really dropped the ball on this one.  

Enough to make my dad angry. And he rarely gets angry. 

Enough to affect the physical health of my sister, who felt she needed to personally be there to advocate for my mom’s care. 

Enough to get my brother the lawyer involved because we felt we weren't being heard and needed to bring it to that level. 

Enough that I stopped caring about what everyone thought of us and began writing and documenting. And I’m only just getting started. 

It would take pages to list the mistakes, inadequacies, oversights and miscommunications that took place during my mom’s nearly six week stay at OSF – the most heinous occurring during her nearly three week stay on the INI Rehabilitation floor. But here’s a sampling of what continually did NOT happen:

Supervision of meals. This was an order and on the big white board in her room. We ended up posting a letter outlining all of her “orders” as well as posting large signs on her walls (some at the request of staff!) So we her family supervised.

Meals in chair versus bed. This was also an order and we ended up having to post this one, too. One night I found her in bed and unsupervised, asleep with her hand on her fork and her sheet pulled up as a bib. So we her family made sure we were there for all meals and that she was safely moved to the chair.

Safety belt on wheelchair. Now, we get that we needed an order to have one she couldn’t get out of – that’s called a RESTRAINT and apparently not a good thing. Hospital politics and protocol aside, putting a seat belt with a button that says “PRESS” on a confused woman and telling her “don’t get out of your chair” then LEAVING her isn’t really “best practice.” So we her family stayed with her to make sure she didn’t get out of her chair.

“Press the call button if you need the nurse.” What happened was some generic person would come on and ask what we wanted, then we’d wait for someone to come in. And wait. And wait. Sometimes a half an hour, sometimes forever. Even if we said it’s kind of urgent, like she had to go to the bathroom or she was trying to get up and we didn’t know what to do. Now, I understand the floor is busy, and I’m not dissing any particular type of hospital staff. But when something like this happens repeatedly on a floor that is supposed to be providing her rehabilitation and basic care, I take issue. (DISCLAIMER: The PTs, OTs and Speech Therapists at this facility were STELLAR - we had absolutely NO complaints about them and they provided my mom with EXCELLENT care and rehabilitation services.)

I’ll spare you the details of the night she spent in her clothes because no one bothered to change her into a gown, or the morning my sister found her unbathed with her catheter overflowing and obviously showing signs of an infection and had to INSIST that a culture be ordered. I’ll only mention that she was allowed on the nurse’s station computer (even after family repeatedly told staff she was confused) and managed to change my dad’s email password and lock him out of his bank account, only for us to be told, “It’s good for her to be on the computer – maybe she should have her own account!” And maybe the most unbelievable – after finding out that we planned to move her to a skilled care facility upon discharge from the hospital COMPLETELY HALTED ALL CARE – to the point where my sister had to shower her the morning of her discharge and she was given nothing to drink and no nursing or tech staff attended to her. 

I’ll note that the above things happened EVEN AFTER my brother came into town and called a meeting with a dozen or more OSF/INI players in what I like to call my mom’s “Care Debacle” to review every single issue we had with her treatment, progress and prognosis. (Again, I stress, the actual PTs, OTs and Speech Therapists she met with during the day were exemplary.)

I’ve gone through a multitude of emotions, as has my family. From making excuses for staff, to realizing it’s them, not us, to disbelief to anger. And I want to note that I am not personally dissing any medical profession such as physicians, residents, nurses, tech staff or the like. What I am completely rebuking are the processes that are in place. Either my mom was not READY to be on that floor (which at one point I asked, since no one seemed to be able to properly care for her) or they were LEGALLY PROHIBITED from doing some things (such as the restraint) or they just weren’t adequately staffed to meet her needs (which led to safety and quality of basic care issues.) But the lack of communication with these issues and the things that we knew were SUPPOSED to be done and CONTINUALLY WERE NOT – to the point where we had to make phone calls, write letters and post signs in her room – makes me think that some policies and procedures need to be addressed at least on that floor – and soon. 

I’m sure the OSF/INI Rehab staff was glad to see us go. But it made me wonder – what happens to the patients who DON’T have a family like ours who advocates for their care? What do families do who don’t have a nurse in the family to ask all the right questions, or a lawyer to make sure all the i’s are dotted and the t’s crossed when necessary?  What would have happened if my mom had fallen during one of the times she was supposed to have a safety belt on and didn’t? What could have been the repercussions of my sister giving my mom a shower because no one would come in and do it for her? And God help us what kind of lawsuit would OSF have been up against if mom would have aspirated and choked on a piece of food because she didn’t have the supervision that was ordered for her? 

I shudder to think. So that’s why we were there – missing work, neglecting family and other duties at home. Losing sleep worrying if she was alone and if so, what negligences were happening in our absence. 

In the end, this is my message to anyone reading this. No matter how wonderful the facility might claim to be, make sure you advocate for your loved one's care. Ask the questions. Don’t be afraid to disagree or discuss a treatment or decision you don’t feel is right – like an early discharge. Ask to speak to a supervisor if you feel you aren’t getting the answers you need or want or the care your loved one requires. And if the supervisor doesn’t work, just keep going up the chain. No one cares about your loved one more than you, and no one is going to advocate for them except you.  

Listen up, OSF and INI powers-that-be. Letters are coming your way soon. This should not have happened, and I hope to God my mom’s care was an isolated incident – though I suspect not. You may be on the cutting edge of technology and medical prowess, but your basic care methodologies and processes puts you at the bottom of my list as well as that of my family. Knock on wood my mom won’t have to be hospitalized again, but if she is I hope to God she’ll be able to go someplace else.


  1. Wow. We spent 2 weeks on 2 occasions earlier this year at Methodist. I am very glad you were there to advocate for your Mom. I was there to advocate for my husband although, not through hardships like you have outlined here. I am glad to hear that you Mom is out of that facility and I pray that she recovers well in her journey.

  2. I agree with you. Unfortunately, I saw it at OSF first hand working there for 22 years. BUT as a patient at INI it was much worse. A nurse calling to tell me I have a brain tumor and then getting annoyed because I was asking questions. She finally faxed the report to me never letting me speak to the doctor. I had to wait 3 weeks to get my questions answered all the while thinking I'm going to die or have brain surgery. I'm fine but couldn't they just tell me that with my diagnosis? Unfortunately for me and your mom, there is no where else to go for neurology care in Peoria.
    Obviously, I've been interested in your mom's treatment and praying for her daily. I'll continue to do so. Sorry for taking this venue to vent about my care but thought it was okay.

  3. Amy-
    When I read this it was surreal because we went through so much of the same when my dad was in hospice care at this time last year, although we were in a different city. We had most of the same players in our family, including the nurse sister who put her life on hold to be with my dad in his final days to ensure that he was getting proper care. We all had to become advocates for my dad by the end, and we all felt that the staff was glad to see us go by the end of it all. It's sad that it has to come to that, isn't it? I don't doubt a word you've said here because we've lived it, too. Unfortunately, it's a problem that spreads beyond Peoria. I suspect it's a combination of all of the above you listed: hospitals are understaffed, the staff they have don't have proper training, and they are scared to death of not following some legal jargon they are bound by. Stay strong. You are doing the right thing by your mom. You are in our hearts and prayers! -Anne & Tim

  4. I couldn't have said it better, Amy. My closest friends went through something similar at OSF a year or so ago. As a nurse, I saw things that were truly unbelievable. I think the kicker was that, after a heart valve replacement surgery on the day of discharge, a NURSE changed my friend's chest wound dressing...WITHOUT GLOVES. Of course, after returning home, he developed a horrible infection, returned to the hospital and nearly died.
    They now use Methodist as their hospital. But, no matter where, you HAVE to be an advocate for your own care.

  5. Go to Methodist. OSF sucks.

  6. Patient Relations OSF Saint Francis Medical CenterSeptember 11, 2013 at 3:04 PM

    Good Afternoon Amy,

    We are very sorry to hear about the patient and family experience at OSF Saint Francis Medical Center. We would like to work with you to resolve your concern.

    Please contact the Patient Relations Department at 309-655-2222 or email us at

    Thank you


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