I am now well into my third year in Patient Safety Activism. My father’s preventable death because of a hospital acquired infection continues to drive my passion. Although he was old and he had health problems, the infection that took away his independence, his strength, his appetite and his ability walk and to live out his remaining days with my mother should not have happened. Nobody except hospital insiders and the grieving family and friends of the other 2 deceased victims of that MRSA outbreak knew about it. So, my father was not only a victim of MRSA, a deadly superbug, he was also a victim of hospital secrecy. Hospitals generally sweep hospital harm under the rug and schmooz patients and families into believing it is part of doing business. I do see a gradual change in this, but it is taking way too long.
Yet, when victims or their loved ones become patient safety activists we are expected to be kind, polite, and above all calm. Many of us have been characterized as angry whiners. I’m sure we have been called worse behind closed doors. Imaging that! Let me just say, I am angry. My anger is completely justified. But, when I testify anywhere, or when I share my father’s tragic story, or I work with anyone on patient safety, I remain polite, and I restrain that roaring lion inside me. I am a professional, and I use the manners that my parents taught me. This brings me to healthcare industry push back. I knew when I stood up to fight for patients and patient safety, that I would be exposing the underbelly and preventable horrors of healthcare…the infections, the errors, the short staffing, the disrespect and paternalism, the ‘toxic hierarchy’, the big bad truth of what happens inside hospitals and other healthcare facilities. I knew it would not make me popular with the “industry”, but of course that was not the reason for my work. Patients and their safety were my priority, much like when I practiced as an RN for over 30 years. I saw so much during that time, but I had bosses…in fact, I layers upon layers of bosses and my family depended on me for that paycheck. How far could I realistically go with my advocacy during my employment. This is why I find retirement so liberating.
Healthcare industry push back is alive and well. My first bitter taste of that was in my very first meeting with Hospital people about MRSA. A contentious doctor proclaimed that the new Maine law to screen high risk patients for MRSA on hospital admission was “irrelevent”. I had just run a patient safety campaign and spent about 4 months writing and rewriting a very involved and detailed legislative proposal for MRSA prevention for the Maine HHS committee, to end up with a tiny part of it in Maine law. That big old lion was roaring inside my head and I wanted to let him out to attack that doctor. But, being the lady that I am, I kept my cool, and moved beyond that arrogance, because we were all in that room to do a job, and that was to make patients safer. The rule making work continued in that committee for months, and his attitude never changed. If I said white, he said black. So much for collaboration. Interestingly, the rest of the group was mostly nurses and none would contradict that doctor. Perhaps I am a little biased, but I love nurses and the herioc work they do, but those nurses ’just went along’. “Toxic hierarchy” is a new term I recently learned and it describes this group’s behavior perfectly.
This summer, I spent most of my time working on a campaign to stop the acquisition of my local dialysis clinic services by a large for profit dialysis corporation. My reasons for this action are described in an earlier blog, but the greatest concern over this is patient safety and access to care. I talked with experts, dialysis patient advocates and former patients and employees of that corporation. I worked with the Maine State Nurses Association, the Maine Peoples alliance and other local socially responsible groups. I did my homework and research and compiled resources and documents. Most importantly, I collected stories of patients who said they were harmed and dismissed. I took all of this and carefully prepared testimony for the Maine Certificate of Need hearing on July 10. In August, I came upon a letter that the corporation had written to Maine officials. The letter was almost entirely about me! It contained misleading and downright dishonest comments about my work, how I go about it, and my character. It was apparently an attempt to discredit me, and my work and to silience me and the patient’s voices. It appeared that the letter was also written to pander to the current pro business and anti union sentiments in our State governement. This guy covered it all, and if one didn’t know me, and saw that letter, they would think that I am a monster! This carefully crafted letter and packet of “evidence” against a retired RN volunteer, who is now an honest hard working patient safety activist was the biggest and longest piece of push back rherotic I have experienced yet! And, it is now an offical State document! My first thought was, if they treat me this way, imagine how they treat patients. Oh my, those poor vulnerable patients. The good thing about this letter is that it validated my beliefs about how ‘small’ this corporation really is.
I didn’t expect to make new friends or win over the healthcare industry with my work. I did expect to help save lives, make patients safer, and to be treated with respect while I am doing it. All of us who do this work have the same expectation. Because we have chosen to lead in Patient Safety because of personal tragedies, instead of waiting for the industry to do it all on their own or even to invite us in, we are sometimes criticized and disrespected. I have watched two of my passionate colleagues experience push back when we were included in industry leaned events. One was a nurse who tried to talk about her mothers tragic healthcare debacle in a federal DHHS HAI meeting a few years ago. The physician moderator of the group rudely cut her off mid story and she was terribly upset by that. The second one was a presenter at the recent Patient Safety Academy in Portland, ME. He was doing a detailed and well prepared presentation on C Diff. His beautiful and healthy middle aged mother died of the horrible infection and he has done tremedous work on awareness and prevention. A very rude crabby infection nurse, cut him off and ‘told him a thing or two’. She was obviously in denial of the imperfections in hospitals, and took my colleague’s accurate and non accusatory presentation as a personal affront. Her actions were embarrasing to her two coworkers and to everyone else in the room. This was my colleagues first time doing a presentation at such an event.
Civility. Is there any such thing in patient safety advocates’ conversations with the healthcare industry? I think so, but it isn’t consistent. All of us need to take a deep breath and think about who really matters in our discussions. We need to put away the egos, denial and the defensiveness. Al Gore would advise us to put the anger in a lock box, and I really do make an effort to do that. We all need to consider what and who our conversations are about. They are about patients, suffering, hurting human beings, who need all of us to survive, heal safely and live. Come on….let’s get along, and have these conversations without push back.
Backbone. That is what it takes to do this patient safety activism job and do it well. The industry has a lot to learn from us, and perhaps the first thing they need to learn is manners. I have never seen any of my patient safety colleagues be impolite during patient safety events or conversations.