Blamers and Fixers: Which One Are You?

You’d be amazed at the email and postal mail I receive from patients who have been hurt by the medical system. Perhaps not at the numbers — I receive a handful each week. Instead, you’d be amazed at what they ask me to do.

I’ve put the people who write to me about medical errors they have suffered into two categories: The Blamers and the Fixers

The Blamers are those who livid-angry, and they ask me to do things that will help distribute their anger further. They want me to help them write letters to doctors or hospitals or others who have wronged them. They want me to help yank a doctor’s license to practice, or help them sue a provider, or participate in whatever form of punishment they believe is appropriate. In one case, the Blamer was a whistle-blower, and she wanted me to begin publishing her work on this blog or in my columns to bring attention to the plight of whistle-blowers (because no one is paying attention to her own blog.) Another lost both parents to hospital infections. In another case, a man wanted me to publicize his story about the towel that was left in him during surgery because the lawsuit dollars being proposed just weren’t big enough.

Their anger is just so palpable. And I get it! I was there! After my misdiagnosis, I talked to anyone who wanted to listen in hopes it would somehow diffuse my anger.

It didn’t.

My guess is that in many cases, these are people who have been so wronged by the system, that they are grasping desperately for something to fix the wrong. Of course, it can rarely be fixed. Apologies can’t fix the hurt, frustration and pain. They think that punishing the wrong-doers will fix it.

It won’t.

The Fixers are a step beyond. Fixers are people who have been hurt by the system, and have turned that bad experience into something else more positive.

Among my advocate-colleagues, you’d be amazed at how many of us are fixers. Very few have just chosen to take up the cause of patient advocacy out of the blue. Instead, their children have been killed by bad surgeries, or they’ve lost a spouse or parent to a medical error, or a diagnosis has been missed (or misdiagnosed all together) and someone they love — or they themselves — have been treated incorrectly.

The Fixing itself becomes the catharsis for the anger, and it is extremely powerful. Helen Haskell, Ilene Corina, Patty Skolnik, Julia Shopick, Bill Thiel — among many others — are all fixers. They lost children and spouses to a system that didn’t do what it was supposed to do.

In some cases, their work is a spiritual mission. In others, it’s simply their way of dealing with anger. In all cases, they took their anger and sadness and refocused it toward something positive.

I am a Fixer. And I am proud of it.

We, the Fixers, are working toward improving the system that caused us the anger to begin with. We put our voices together and patients and providers are hearing us! We are saving lives with our work. There is NOTHING more powerful, nor cathartic, than saving someone else’s life.

If you find this blog post and you are still one of the Angry Ones, a Blamer, then please consider becoming a Fixer. I promise you, it will make ALL the difference in your quality of life.

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See follow up post: Doctors are Blamers or Fixers, too

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Soldiers’ War Injuries = Pre-existing?

This story from NPR caught my eye this morning.  Even those who think I go a bit off the deep end when it comes to casting dispersions on insurance and other payor programs that should be paying for our healthcare and don’t… this will make you think twice.

The story concerns American soldiers who have fought in Iraq and have been injured, in this case, by bombs or rockets.  They return to the States with long term effects from those injuries ranging from headaches to bleeding ears to insomnia, symptoms which never existed before they left and clearly result from their war injuries.  Heck, some of them have been awarded purple hearts for those injuries.

If I understand the story correctly, if the soldiers are diagnosed with post-traumatic stress (PTSD) then the VA will continue to care for them.  This is important because most of them don’t stay in the service past their original enlistment, so the PTSD diagnosis establishes that they have suffered from the effects of war.  That ensures their care once they leave the service for the injuries suffered during service to our country.

That’s fair.  And that’s the point being made by the injured veterans who testified before the US Congress yesterday.  But, according to Paul Towns, who runs an organization called Veterans for Common Sense, there may be tens of thousands of soldiers who aren’t receiving that fair care they deserve.

Unfortunately, those tens of thousands are being denied care because, instead of being diagnosed with PTSD, the VA “discovers” that they had a “pre-existing personality disorder” after they return.  Never mind that these soldiers passed all their physical and mental tests and exams before they entered the service.  Never mind that they didn’t get blinding headaches, bleeding ears or suffer from insomnia before they went to Iraq. 

Are you kidding me?

This seems like a travesty to me.  That these soldiers fought on our behalf, to help America retain its freedom…  and we would deny these men and women who stood on the front lines the healthcare they deserve?

And this is the government doing the denying – not a private health insurance company.  That means it is our tax dollars that would need to be spent to take care of these soldiers.  I, for one, think that it is a small price to pay to take care of these soldiers who have put their lives on the line to protect me.

Even aside from dishonoring these men and women in this way — for the government to be so underhanded, for the government to strip the possibility of care from these soldiers, establishes a precedent for other payor entities to do the same.  Afterall, if a private insuror did the same thing and was sued, all their lawyers would have to do is point out that the US government denied care first!

It’s wrong.  I’ll be interested to see what the outcomes of the congressional hearings are.  If you have the opportunity to contact your congressional representatives, please do:

Contact information for US Congress Members

Covering the healthcare costs for injured American soldiers is only fair.

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What Sicko Doesn’t Tell Us

As I mentioned in yesterday’s post, Michael Moore’s movie Sicko provides background on how our American healthcare system has become so dysfuncational, and some of the horrifying ripple effects on the health of our nation.  What it fails to mention is one major group of ripples:  medical errors and misdiagnoses.

According to the US government’s Institute of Medicine, between 44,000 and 98,000 Americans DIE each year from medical error or misdiagnosis.  Other organizations, including HealthGrades, suggest those numbers are way too conservative, that, in fact, the numbers are much higher.  Beyond those who die, millions more are injured by these mistakes.

So it begs the question:  what differences in the rates of medical errors and misdiagnoses might we find between universal health care, such as those systems cited in Sicko in Canada, France and Great Britain, and privatized healthcare programs such as the system we use here in the United States?

I’ve poked around the internet and can’t find any numbers to speak of… I can find a few within certain diseases, but nothing that helps compare apples to apples…..

When I refer to medical errors, I’m referring to problems such as:

• surgeries:  operations on the wrong body part, called “wrong site” surgeries, or mistakes made during the surgery, or even equipment left inside the patient.
• drugs:  the wrong drug is prescribed, or the wrong drug is dispensed, or the wrong dosage is prescribed or dispensed, or the drug is given at the wrong time, or a dose is missed
• other treatments:  therapies are mis-prescribed, for example, an orthopedist sends a patient for physical therapy which ends up exaserbating the problem, not helping it
• infections:  usually facility acquired (such as in hospitals or nursing homes) — a patient is admitted for one problem, but acquires an infection while resident in the facility.  MRSA, C. Diff and necrotizing fasciitis (flesh eating bacteria) are examples

When I refer to misdiagnosis, I mean:

• the patient is told nothing is medically (or mentally) wrong when, in fact, something is
• the patient is told s/he has one ailment when, in fact, s/he has a different ailment
• the patient is told something is wrong when, in fact, nothing is wrong

[A request — if anyone can point me to real numbers among the other countries, I would really appreciate it!]

My sense is this — purely a guess, but an educated one — that the error rate in the privatized US system,  where healthcare is more about money and less about care — is higher.  That we are dying and getting sicker because of our privatized system.

Why do I think this is true? 

If you review the kinds of errors listed above, you’ll see that most are time-related.  If the professionals who made them weren’t in such a hurry, if they weren’t worried about reimbursement rates or malpractice insurance payments, if they were more inclined to spend the time that is really needed to LISTEN and communicate with patients, then those errors could, in many cases, be prevented. 

Drill it down:  who will make fewer errors?

• a doctor who has the time necessary to listen to a patient?  — or — the doctor who knows that in minute #7, he begins losing money because the insurance company won’t reimburse him for any time beyond that?
• a surgeon who has the time to carefully review the charts prior to a surgery, takes the time to mark which body part needs to be cut, then operates correctly — or — the one who knows s/he has only one hour to perform the surgery and move on to the next one or it will impact the hospital’s profits?

Patients — take heed — there are many many ways you are hurt by our current dysfunctional system….  not all are raised in Sicko, but at least its the start of a conversation.

… and in the meantime?  Regardless of what system provides us with health care — or no health care — we still need to advocate for ourselves in all those good practice ways I talk about on this blog, and through my columns, every day.

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Read two more posts about Sicko:

A Patient Advocate’s Reaction to Sicko
Why Sicko is only the tip of the Iceberg

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Marcus Welby: Did He Set Us Up?

If you are of a certain age or older, then you remember Marcus Welby on TV.  I spoke to a 20-something man yesterday and described Marcus Welby to him as everyone’s perfect doctor.  His early 1970’s TV show was always popular, and we all KNEW he was the perfect doctor.

Compounding his image was the fact that at that time, doctors were venerated, as if they all stood on pedestals.  Becoming a doctor was the ultimate, because one was promised reverance and beaucoups bucks, too.

While I was a major fan of Marcus Welby, MD, I can’t help but think today that perhaps one reason our healthcare system in the US has failed, is because we all still believe Marcus Welby exists, and is reincarnated in today’s doctors, too.

We’re wrong.  He’s not.  And it has become downright dangerous.  We’ve been set up.

Consider:

Marcus Welby (played by Robert Young) and his partner, Steve Kiley (played by James Brolin) were handsome, white, male, compassionate, paternalistic, and highly intelligent.  They had perfected the concept of bedside manner, and they knew everything there was about every medical specialty.   [Can you think of one single doctor who fits that profile today?  There are many doctors who embody one aspect or another — but I can’t imagine there is a single one who embodies it all.]

Drs. Welby and Kiley were always right.  [OK — don’t even get me started on this one!]

They took care of both physical and mental/emotional health issues.  [Today, if you have a mental or emotional health issue, it’s probably dangerous to be treated by a physical health physician.  Make sure you see a mental health professional to avoid getting yourself into treatments that may not be the best for you.]

I don’t recall that any of their patients ever had to pay for their care.  No one ever raised the question.  No matter who the patient was, how much care was needed, how long they stayed in the hospital, how many times they stopped by Welby’s office — no one ever had to pay for care. Not surprisingly, their patients never seemed to file for bankruptcy either!  [Again — don’t get me started!]

I could go on and on — but you get the picture.

And just so you know I’m providing a balanced view — I do give them credit for showcasing who may have been the very first Latina-American actress as the person who ran their office — and perfectly so!  Consuelo.  She was crackerjack.

The problem is — just like we little girls dreamed of becoming princesses, and little boys dreamed of becoming firemen (and nowadays?  vice versa!) — so many also embraced the idea that Marcus Welby represented their doctors, too.  And for whatever reason, too many of us over that certain age, just can’t let go of that concept.

And — what if you are a doctor today?  Granted, there are many of them who think they are Marcus Welby, and would want you to believe such.  And I suppose there are even a few Welby-wanna-bes out there, too — but most?  naw.  Who on earth would ever want to live up to that TV perfectionist hype?  They don’t ask for it, they don’t want it, and it’s not appropriate.

It’s time for Welby Worshipers to let go.  Time to face reality.  Time to realize that doctors are people just like we are, who pull their pants on the same way and have the same human attributes — including failings — as we do.  And once we embrace that attitude, it will be a whole lot easier to understand why we need to advocate for ourselves and continually question our doctors and our care.

No more abdication of healthcare decisions to the likes of a doctor who really is NOT Welby, or McDreamy or McSteamy — or even House. 

It’s time to take responsibility for ourselves.

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On a very separate, but related, note:  I’m headed out to see “Sicko” today.  I’m no fan of Michael Moore as I believe he is inflammatory, but never offers positive alternatives.  I hear this movie is bi-partisan — definitely a break with his tradition, but certainly appreciated.  And, I suppose that he incites dialogue, too — in the case of healthcare, I see that as a plus.

So as much as possible, I promise to remain open-minded, and I’ll let you know just what I think.

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CBS Reports on NFL Concussion Stance

If you were interested in the interview with  Brent Boyd about the concussions he suffered while playing in the NFL, and his concern over reports of the cause of death of   Andre Waters, you’ll be interested in my blog post last February:  Football, Concussion and Suicide.

The NFL says that on any given Sunday, eight players suffer from concussion – yet they are denying disability payments to their players who cannot work due to those injuries after they retire.

And here’s a surprise… the vignette concludes that the NFL may be more interested in profits than it is in the welfare of the players who made those profits for them.

Yeah.  Surprise, surprise.

I can’t find a link to the story itself, but here is Cynthia Bowers, the reporter’s, blog post.

SPTCL and Post-Traumatic Meltdown

It comes on in a rush, and it makes me feel like a Sweet-tart — you know, one of those candies that you bite into, it grabs the sour corners of your tongue, and it just dissolves…. The overwhelming dread and tears begin to descend, sometimes I just collapse. It takes a good cry to get over it.

Then I pick myself up, with a renewed sense of making sure NO ONE else will ever have to go through that.

It’s PTSD — Post Traumatic Stress Disorder — which comes over me once or twice a year, and is a result of my misdiagnosis of three years ago. A trigger, in the form of a sad movie (The Family Stone) or someone else’s misdiagnosis story, or, this week’s trigger, which I’ll describe in a minute…. and I just melt down.

This week’s trigger: I received an email from a gentleman whose wife has been diagnosed with the same, very rare, very aggressive lymphoma I was diagnosed with. It’s called SPTCL, Subcutaneous Panniculitis-Like T-Cell Lymphoma. Sometimes it’s abbreviated to STCL. It’s extremely rare: in 2004, it was reported that only 100 cases had been reported worldwide in the past decade. And because it’s so rare, it’s almost impossible to find anyone who knows much about it.

(This post has been moved: http://www.trishatorrey.com/2007/06/22/sptcl-and-post-traumatic-meltdown )

The Darker Side of Alzheimer’s Care

So much positive reaction about Alzheimer’s and dignity, as I blogged about a few days ago…

But something depressing and sinister crossed my desk just this morning …  a link sent by my dad from the Sarasota (Florida) Tribune regarding the sad reality that most Alzheimer’s patients and caregivers must suffer, and as so much of this work does, it breaks my heart.

It tells the story of Arnold Krinsk, an Alzheimer’s patient, who suffered extreme INdignity — violence, blacklisting, moving from one facility to another, and all because the people who were tasked with caring for him just don’t give a d*mn. 

Dogs in kennels get better treatment.

Over the span of a year, Arnold was shuffled through five nursing facilities, plus two mental health centers, because he was deemed “difficult.”  Because he would get upset and lash out, which so very many Alzheimer’s patients do, Arnold would be expelled — and it would be up to his wife of 60 years, Sara, to figure out where he should go next.  The last place she found for him, before he died, was one of compassion, one that could tend his needs and offer him the dignity he so deserved.  He died not long after that.

Too often, as Every Patient’s Advocate, I hear horror stories about nursing homes and the way residents are treated like animals.  Trying to fix the nursing home, long-term care facility debacle is an advocacy all its own.  But because both my mother and my mother-in-law reside in long term care facilities, I take so many of these reports so personally.  And I thank God every day that they are both living in fine places, both treated with compassion and caring.

SHAME on those people who work in facilities that treat their residents as sub-humans.  SHAME on them for not respecting those in their care.  SHAME on them everytime they do something — anything — they would not want done to themselves or someone they love.  SHAME on them for sucking all the quality from the life of another human being.

And SHAME on a system that allows that to happen.  That system is comprised of people who must look at themselves in the mirror every day.  I don’t know how they face themselves.

And don’t tell me the system works like that because there’s not enough money, or not enough staff or not enough of whatever it is.  Some facilities have figured out how to make it work — and all facilities should follow suit.

Sorry — everytime I think about how we treat too many of the elders in this country – a la this article — it gets my blood boiling.

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