McCleary MRSA Prevention

http://www.pressherald.com/2016/05/07/mainers-call-for-more-data-to-help-prevent-medical-errors/

This morning the Portland Press Herald had this article on the front page.  The  high numbers of vulnerable sick and injured patients who die not because of their illness, but because of preventable harm is just not acceptable.  It makes me crazy that  1/4 to 1/2 million people die unnecessarily every year in the US.   Dad died in 2009, after his hospital infected him with MRSA, but he was not counted in any of the voluminous data that I read.   He suffered a great deal and died within several weeks of the infection.

I have worked, as a volunteer, in Maine and nationally since Dad’s death, to help stop this epidemic of needless deaths.  Just last week, on May 4, there was a Patient Safety conference in Augusta Maine sponsored by the Maine Sentinel events team.  I asked several times for the agenda and details for this event, so I could register and attend.  None were sent.  Then I was told that there was such an overwhelming response to this event that it was “sold out”. I could only attend if there was a cancellation.  There were no cancellations.   I was very disappointed because the patient’s voice is essential to any discussions about them or about Patient Safety.  So I asked again for an agenda so I could advise the organizers about where it would be good for them to include the patient’s voice.  None was received.   Since I got nowhere with this, I wrote to the Commissioner of the Department of Health and Human Resources of Maine, and expressed my disappointment that the State would have such a conference without inclusion of the patient’s voice.  I would be very surprised, but pleased to hear back from our Commissioner.

Coincidentally, on May 4, the very day that I was excluded from a Maine Patient Safety conference that was held about an hour away from my home, a reporter from the Portland Press Herald called me because of a recent report from Dr Marty Makary, of Johns Hopkins, that healthcare harm is the third leading cause of death.  This was not news to me, but I was certainly happy to have the opportunity to talk with this bright reporter.  He also sent a photographer to my home and this became a front page article on May 7, today.  I am very grateful to this reporter and his newspaper for recognizing the importance of awareness on this issue.

We all know the old saying “there is more than one way to skin a cat”.   Well apparently, there is more than one way to get the  word out on Medical errors and preventable healthcare harm. I missed the opportunity to bring the patient’s voice to the Patient Safety conference in Augusta, but my voice was shared with thousands of others on the front page of the Portland Press Herald this morning.  Although this is an unpleasant and for some an unpopular subject, all of us, as a society must talk about this openly and often,  and demand better.

In my work as a Patient Safety Advocate, and as the survivor of a harmed patient, I have heard many things that patients and families are told when things go wrong.  This is just a starter list.   I want friends and colleagues to add to it.  It seems that many of us have been on the receiving end of a widely used script that is used when bad things happen in Hospitals.

1. We did every thing we could.   (really?  When, before the harm or after?)

2. These things happen all the time.  (not to me or my family they don’t)

3. This is a very rare event.  (What about my aunt, and my classmate and my next door neighbor?)

3. There really isn’t much we can do about it.  (then, this must be your  way of doing business)

4. That is your perception of what happened and not necessarily what actually did happen.    (I saw it happen!)

5. We have met the accepted Standards of care.  (Honestly?  Then how come my loved one walked in with a minor problem a week ago and ended up sicker, with an unrelated problem?  I’d suggest changing your Standards of Care.)

6. You have an infection.  (what kind of infection? is it catching? is it curable?  will I be affected by this or disabled by it? how do I protect my family against it?)

7. You most likely carried that infection into the Hospital with you.  (Then I must have carried it around at home too.  Why didn’t I get an infection at home  and why didn’t my family get it too?)

8.  Just leave it to us, we will take care of everything.  (I already tried that)

8. You haven’t been a compliant patient and that probably contributed to the problem. (Seriously?  Just because I didn’t “obey” your commands, I got this horrible condition that is completely unrelated to what I came into the hospital for?  Are you blaming me for a problem that you caused?)

9. You knew that this complication could happen,  because you signed an informed consent.   ( You never once told me that I could become disabled or die from this procedure. My consent for treatment form was handed to me when I was medicated and scared, so I did not have the opportunity to look it over carefully before I signed.)

10.  Of course we expect you to pay for the treatment necessary after your complications.  (You infected me and now I am supposed to pay a thousand dollars a pop for an IV antibiotic??)

11. Oh, you are losing your home because you can no longer work and your bills are so high?  We are so sorry to hear that.  (No you are not!  I became disabled because of dangerous harmful hospital care and then you sicced  your collection agency on me when I couldn’t pay the bills for lousy care!)

12. You are overreacting.  (no, I am not.  My loved one is not doing well and you and your staff are not paying attention to him/her.  I know him/her better than you do)

13. Perhaps you should consider comfort care.  (he just took a turn for the worst this minute and you us to give up hope right now?)

14. If you do what your doctor tells you to do, you will be fine.  (Funny how many people do that, and more. But they are still harmed by their healthcare.)

15. At least his death was peaceful.  (He has spent the last several weeks losing weight, unable to do anything or walk, getting bedsores,  and isolated in this room because his hospital infected him….you think that was peaceful for him?  He mourned the loss of independence and inability to live with beloved wife for the past several weeks,)

16. Oh, but that IS the complete health record.  (Where is the information about when you operated on the wrong site? or the hospital acquired infection? or when he/she was given the wrong medicine? or when he/she fell out of bed and broke an arm?)

17. The family is being difficult.  (It might be  because nobody is paying attention to their concerns, or their right to safe high quality care and to advocate for their loved one)

18. We will do an internal investigation and a Root Cause Analysis.  (What part to I get to play in your investigation, and when do I get the answers I deserve?)

A colleague mentioned that I should add  “Nothing” to this list of what providers say….Providers sometimes respond to our questions with silence…no answers at all.  No responses to emails, letters or phone calls.   Ignoring the harm does not make it go away.

Another said this

Let’s all add to this list of things that providers/Hospitals  tell us when things go wrong.