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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Hmm…
I think I have to stand up for the health care professionals, here.
It’s unfortunate that hospitals portray themselves as sparkling clean and perfect because this is simply not the case. Practicing medicine and nursing are acts of humanity, and unfortunately, mistakes will be made. I think that the public’s idea (which they get from the media and the hospitals, themselves) make it difficult for medical professionals to feel comfortable saying “Yes, I made a medical error.” There is not one nurse who will go through their career without making a med error. It is just a sad fact, and I do not look forward to the day I make my first. But unfortunately, we also need a public that is understanding to the fact that even with the best intentions, bad things can, will, and do happen. Of course, this is difficult to explain to the upset family member, and if I were in their position, I would feel the same way. It’s just that the general idea of perfection can do so much damage. We are all human and chose this profession because we hate to see people suffer, but in the end, there is only so much we can do.
But in the end, you’re right about the trust issue and that is at the heart of it, and how sad that it’s so hard to build back up. I understand, I do.
Caroline,
You make some good points. Often the problem is that expectations haven’t been managed correctly — what people and patients expect isn’t even realistic. Nobody has ever taken the time to correct those expectations and that creates a lose-lose, for sure.
All that said — you are right — I don’t believe anyone goes into a health care career with the intention of doing anything less than saving every person they meet and returning their lives to “normal.” That’s impossible, but certainly a worthy goal.
The impossibility then conflicts with the reality — and that disconnect creates cover ups — and that adds to the mistrust. There are studies that have shown that the simple admission of a mistake, coupled with an apology, is so much more effective than covering up that mistake. For the patient, they allow trust to continue. For the provider, an apology can eliminate a lawsuit.
And for a nurse? Bless you all — because among all the providers, you have the toughest jobs, there on the front lines.
Trisha
Medical retaliation is alive and well in NC!! I once was seeing a PA who insisted my headaches had to be on one side or the other. After several attempts to explain that the pressure stemmed from deep inside my head and radiated outward, the PA became hostile and told me that she’d been in medicine x-number of years and had dealt with patients who didn’t understand their pain. Enough was enough and I requested to see the doctor. Suddenly, she’s parading me through the reception area telling everyone who would listen that I wanted a “real doctor” and that “a PA isn’t good enough.” I NEVER said that! This PA was the assistant to my regular doctor and I simply wanted to see him rather than deal with someone who refused to listen and basically argued with me about my symptoms. I left the office in tears and later found a new doctor! But the story doesn’t stop there!
Apparently this tale was shared with many colleagues. My daughter had head pain that required a trip the emergency room (screaming with pain, hyperventilating.. it was HORRIBLE!), but during a follow up visit with her pediatrician the next day, she wanted to only prescribe migraine medication without any further testing. I explained that what we were dealing with wasn’t a migraine and asked if there were any other possibilities being considered. The dr wasn’t happy about it, but did order and MRI. Before we made the appointment for the MRI, she had another episode and this time we had to call an ambulance! She couldn’t sit up, lost her sight breifly… very scary ordeal! At the hospital, she had a spinal tap which was normal, but got an appointment for a neurologist. We still had to go for another follow up, but this time I requested another doctor who had been seeing my son since birth. He was prepared for our visit, though! He said he had spoken with the other doctor and had to agree that it was migraines. The hospital had given her pain medication and I refused the migraine meds again, opting to wait and see what the neurologist said. That very night, the previous pediatrician called and went on with a 10 minute spill about how she felt I was allowing my frustration with my daughter’s illness to stand in the way of recommended treatment. We had nothing short of a showdown! She then threw me a curve… she said she had spoken with MY doctor (they are all members of the same group) and knew that I was a “difficult patient!” That’s when it really hit the fan and I told her just what I thought of her as a doctor and human being in general to have called me up like she did. Having no alternative, I had to take my daughter back to my son’s pediatrician because my daughter now had a headache that wouldn’t go away. He sent me out of the room, talked with my daughter, then told me that it was just stress and that it was the same stress that triggered her migraines.
It turns out, the neurologist said my daughter had a viral infection that had inflamed the meninges of her brain. Migraine medication wouldn’t have done a thing for it! The later developing headache was a result of the spinal tap and could have been fixed with a blood patch had her doctors considered something other than migraines. She only had a few episodes of the severe head pain, but for two weeks she suffered with a headache that could have been fixed in less than one day!