Two incidents in the past two days will make your hair stand on end. Both regard medical errors, and both involve the fear of making them public because of possible retaliation.
A newspaper health reporter contacted me. He’s writing a story about MRSA and other hospital-acquired infections and asked if I knew of anyone he could interview. In fact, I have blogged previously about my friend who died last spring after acquiring both MRSA and c. diff in a local hospital. On behalf of the reporter, I contacted the friend’s daughter, a woman in her mid-50s who has a few health challenges of her own.
Most powerful, and the biggest impact, will come from her email reply to me:
I believe there is a lot that needs to be done to educate people about the perils of our current health care system, and I think it’s imperative that hospitals at least be held to the standards of care and hygiene that they espouse. It is a travesty that patients and their families feel unable to express their concerns and ask questions because of fear of possible resentment or retaliation by the hospital/medical establishment. I believe that there is a lot of frustration on both sides of the issue, but hospital personnel are supposed to be the professionals; they are supposed to understand that they are dealing with patients and families under tremendous stress who do not have the same level of medical knowledge that nurses and doctors often take for granted, and that they are entitled to ask questions and advocate for their loved ones. To be yelled at by a head nurse for expressing concern when care is not provided as expected is inexcusable, in my opinion.
However, as much as I would like to become involved in working toward an improvement in the present system, I don’t think talking to a reporter is in my best interest or my family’s best interest. I am working diligently on putting a lot of the toxic memories aside, and I really don’t want to dredge them up again…and wonder who might find out about my comments and what the repercussions might be.
I had to reply what was in my heart, “Believe me, I understand completely. I share your heartbreak and your frustration.”
The second contact came in the reply to a survey I sent to those who have registered to use The Doctor’s Report Card. One question in the survey is, “Have you discussed your feedback with your doctor?” And I share this reply with you, too….
Are you kidding? I don’t dare. My choices for this type of care are limited, and he is the only doctor available in my area. He’s an arrogant sonofabitch, but he also weilds a lot of clout here. If I cross him, it could mean that I’ll never be able to get decent healthcare in my area again. I used the reportcard so I could be anonimus.”
The fear felt by these two replies is palpable. Whether or not their fear is founded (and I tend to think it is), their perception is that they can’t stick up for themselves without paying an even bigger price down the road.
I spend a lot of energy asking patients to stick up for themselves, to let their providers know how they feel about the service they are receiving or the care being provided. I do honestly believe there are ways of getting messages across to even the most arrogant and condescending among those providers. But it can’t be done with a drive-by complaint. It has to be approached in specific ways, and one of the books I’m writing will spell out how it needs to happen.
The bigger problem here is a trust issue. And a trust broken is never easily rebuilt.
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