February 4th, 2009 by Trisha Torrey
(The following is reprinted with permission from John James, PhD, a patient safety advocate who came to his work after the loss of his son, Alex, to medical errors. Dr. James publishes a monthly patient safety newsletter, and has written a book focused on what he learned about the dysfunction of America’s for-profit healthcare system. His book is called A Sea of Broken Hearts. Dr. James has also been one of my guest bloggers.
I share it with you today, because it provides two lessons for us. First, that whenever we access medical information, we must be sure we are assessing it objectively, and getting objective information from it. And second, because it reminds us that medicine is so very personal, that almost no medical information can be completely objective. Even those strictly scientific medical research results we find?… they were biased to some extent when they were designed.
Among those of us who bring you patient empowerment and patient safety information, we do try to be as objective as we can. But…… well….. read what Dr. James has to say…. )
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Healthcare Journalism and Truth
A perspective article in the New England Journal of Medicine gave me a dose of my own medicine to ponder. Susan Dentzer, a medical journalist, poses important questions about the role journalists should assume in communicating information to the public.6 To what extent should the big picture be conveyed? How far can one go in sensationalizing a reported medical discovery? Is the story I am writing something my readers might use to determine their own care, and if so do I have a responsibility to be more careful? How far should I go in mentioning caveats to the reported results? Have I over simplified the results to keep my story short?
I have chosen to become a medical journalist in a most unconventional way. I am neither a journalist in the usual sense, nor am I a medical caregiver. I am only a medical scientist trying to communicate to my readers the important patient safety findings that appear in selected medical journals. I am not making a living as a medical journalist. I do this because my heart has been broken by uninformed and unethical medical care, and I do not want this to happen to others.
My stories are intended to be useful to readers in their own medical care and to be useful in informing ordinary folks of risks associated with healthcare. I must ask myself, am I writing in a balanced, objective and clear way? I honestly struggle with these issues at times. Medicine is incredibly complex and placing new information in perspective is not easy. If I seem at times to give medical advice, this is not my intention. I seek to convey scientific facts to you that will help you ask the right questions of your doctor. I’m not a physician, and I don’t pretend to be one.
Am I biased in my reporting to you? As much as I want to be objective, those of you who have read my book know that I think we have an unethical, dangerous and profit-driven healthcare industry. I will do all I can to expose examples of these problems and show how we might one day have an ethical, cost-effective, inclusive, and trustworthy healthcare system. I am biased that way.
As careful as I try to be, I will make errors of perspective and balance in my stories. For all the criticism I level at the American healthcare industry, I too shall err.
~ @ 2009 John James, PhD
October 18th, 2008 by Trisha Torrey
No commentary needed here. See what my friend Susan shared with me about her recent experience:
I had a routine colonoscopy, then 5 days later, I began to hemorrhage and passed out on the street corner. Some passerbys helped me and called an ambulance, but I ended up in the St XXX’s ER, one of the 9 circles of hell. I had a second hemorrhage there and was hospitalized for 3 days…
The St XXX’s ER was so horrible – you should have a permanent station there! I was tucked away in a corner room alone. I was on a monitor and I began to feel bad – my blood pressure dropped dramatically (30 points) and I called out for a nurse. Someone was passing by and he said he’d be right back. He never returned and I was by myself for another 20 min – at which point, I realized that being good wasn’t going to cut it and I needed to be assertive.
I started shouting and some staff showed up. One woman was trying to draw blood from my hand, but I was shaking so bad (probably from the shock) that she couldn’t fine a vein, so she just kept poking me while I sobbed. She never looked at me, but instead carried on a conversation with someone outside the room about celebrity gossip.
The ER was also filthy – I saw so many violations of sanitary standards.
On a better note, the GI Attending was a great doctor and once I got to the ICU, the care improved dramatically.
It had taken me years to get up the nerve to have a routine colonoscopy – it’s rather ironic that I did this for my “good health” and ended up in the hospital.
I have nothing to add to this except to suggest you take a page from Susan’s book. BE ASSERTIVE if things are not going the way you think they should. Be the squeaky wheel!
Thanks for sharing, Susan. You have provided someone else with what they need to advocate for themselves in a similar situation.
August 25th, 2008 by Trisha Torrey
When I was (mis)diagnosed with SPTCL (subcutaneous panniculitis-like T-cell lyphoma) in 2004, I was handed a book, published in July 2004, that stated that “fewer than 100 cases have been reported in the last decade.”
Yeah — really, really rare. Because that’s a book used by oncologists all over the world.
Then, from Fall 2004 through May 2008, I heard from only two other people dealing with SPTCL diagnoses. One was a husband of a woman diagnosed. One was the friend of a person diagnosed. I never heard back from either one, so I don’t know their outcomes.
You can imagine then, however AMAZED I am, that I have now heard from three people diagnosed with SPTCL in the past four months!
Heather — we worked together and proved she had been misdiagnosed, too. You can read her story on my SPTCL page.
Cynthia — who has struggled and been treated for her SPTCL for two years or so. Here’s her story in her own words.
And now Daniel — a 15-year-old boy whose mother, Sonia, contacted me. Daniel’s diagnosis is HIGHLY suspect, like Heather’s and mine. She’s still in the process of chasing down more details. You can read the latest on Daniel here.
The point? We are developing a community of people who can offer information — and hope — to others who have just received a devastating diagnosis, and are reaching out to others.
You can do the same! No matter what your diagnosis, you can look for other blogs that address it, or set one up yourself. Share information, Vent. Ramble. Get angry. Help someone else — the most important part. We’re all in this healthcare thing together, you know.
August 16th, 2008 by Trisha Torrey
Beginning October 1, 2008, Medicare, and many health insurance companies, will no longer pay hospitals for the additional services needed for patients who suffer from “never events.”
Never Events, as defined by the National Quality Forum, are those events which should never happen to a patient. There are 28 errors on the list ranging from wrong site surgeries to drug errors to crimes committed by medical professionals.
Not included on the list from the NQF are HAIs (hospital-acquired infections). There may be many reasons for this, but there are many groups and organizations that believe HAIs like MRSA, C.Diff and VRE SHOULD be included on the list. Many of them, although not all of them, are preventable.
Regardless of what the left hand is doing (NQF), the right hand of payers (Medicare and many insurers) have decided that these infections will no longer be covered. That means that any hospitalized patient who contracts, or at least presents with, an infection during a hospital stay may not be charged for the extra cost of treating the infection, nor will the hospital be paid by Medicare or many of the health insurance companies.
I don’t have the expertise to say whether this is right or wrong. On the one hand, I believe it’s absolutely necessary to force hospitals to figure out ways to decrease the numbers of patients who contract these infections, estimated to be upwards of 5 million patients per year.
On the other hand, I know that sometimes patients arrive with pre-existing infections that may be apparent when they are admitted. Can they be tested upon arrival? Of course they can — although some hospital personnel point out how expensive that is, and that insurance won’t cover that either. I have no doubt that there will be some problem for patients that crops up from this new ruling. Hospitals will refuse to admit patients at risk, or they will discharge them too early so they can — at least in the paperwork — ignore an infection just as it begins. Hospitals will do whatever they need to to protect their *sses — and it will be at the expense of patients. Unintended consequences, all based on money. What else is new?
During the past few days, a dialogue has taken place… wait… make that a diatribe…. on the blog of a certain “buckeye surgeon” where complaints and barbs have been thrown at a newspaper reporter who wrote about this October 1 date for reimbursement stoppage. On just about the same day, the Wall Street Journal printed an article by Dr. Betsy McCaughey, founder of RID (Reduce Hospital Deaths) that gave some statistics about hospitals that have addressed infection problems — and have successfully reduced their numbers, one (claims) to 0 patients over a span of years.
So –I pulled some quotes from Dr. McCaughey’s WSJ article and posted them to the blog — and you would have thought I was the devil-incarnate…. whoa! A regular lightening rod! All those doctors so quickly turned their ire on me. And I thought angry patients got worked up! They can’t hold a candle to posters like “white coat” 
and “anonymous” who — God forbid — don’t even use their real names.
No — they attacked me one after the next. In fact, it began when I suggested that SOME hospitals were actually trying to help patients! SOME hospitals are actually asking their doctors and personnel to adhere to a checklist that — (you won’t believe this) — actually prevents infection!
Oh — one even attacked me for not being grateful that I was misdiagnosed with cancer. She told me I should not have been upset at the misdiagnosis — I should have been relieved that I didn’t have it. (My standard reply, which I didn’t bother with is — “gee — you didn’t get hit by a car today. Are you relieved and grateful?”) Of course — what on EARTH does this have to do with infections? I’m not sure.
What’s the bottom line? What can we learn from this? Honestly — I do NOT believe that including HAIs on the list of never events Medicare and some insurances will no longer pay for was the right approach. While some infections could have been listed and it would have been helpful, instead I think Medicare has only thrown down the gauntlet for hospitals to go underground. Patients will pay the price in even worse health problems. We must be more vigilant and be prepared to stand up for ourselves and our loved ones, and once October 1 rolls around, that will be even more difficult.
What the Trisha-bashing on the Buckeye Surgeon’s blog has shown me is that when we patients begin to stand up for our NEED for decent healthcare, we become the enemy. The point I tried to make on a couple of the blog posts was that I think patients and providers need to remember that we have the same goal — improved patient care. But those folks didn’t want to go there. They just wanted to bash me.
I pray none of them is ever hurt by a medical error. I hope none of them ever suffers at the hands of a medical practitioner who is probably just in a big hurry because he doesn’t get reimbursed well enough for his work. I hope they don’t lose a loved one, like I did, after she acquires MRSA.
But mostly I hope they will stop taking their frustration out on the messenger. Afterall — excuse me — I THOUGHT we all had the same goal?
Don’t we?
