Archive for the 'Blamers and Fixers' Category

MRSA: Victimization and Shooting the Messenger

Yesterday’s post, where I told the stories of three (+2) victims of MRSA infections, raised ire, blame and excuses from commentators and emailers alike.

Never mind that they were stories of five people who are infected with MRSA, one of whom has basically been left to die. Never mind that the frustration levels of these patients while trying to get treatment are over the top. Never mind that these people are victims of dirty medicine — the kind where guidelines and controls exist, but are ignored in too many places. The negative comments were aimed at me — it’s easier, after all, to shoot the messenger.

This post has been moved.  Find it by linking to its new location

When Blaming Gets in the Way of Well-being

Last evening I heard from Jack, a man with revenge on his mind. Sadly, Jack’s focus on making sure someone “pays” has moved the real problem, and the person who needs his help the most, to the back seat. It’s a bad situation, and it just breaks my heart.

Jack has a six-year-old son, Max. Two weeks prior to Max’s birth, his mother was diagnosed with a strep infection. When Max was born, he seemed normal and neither the doctors, nor the family were aware of any problems. But within months it became apparent that problems were many. Eventually, bloodwork was done, later a biopsy, and Max was diagnosed with muscular dystrophy.

Jack thinks the hospital, or the obstetrician, or both are at fault for Max’s disabilities. He is doing whatever he can do — afford to do — to prove that point. And that’s why he contacted me — to help him prove that point.

He wants them to pay.

I chatted with Jack for a little while. I asked about the diagnosis, and Jack was unclear about it. He tried to get the Mayo Clinic to study Max, for free, but the Mayo Clinic wasn’t interested. They wanted thousands of dollars to do a workup, and Jack doesn’t have that kind of money. It’s clear there is a dystrophy of some sort, but Jack thinks the diagnosis may be wrong. He couldn’t say why except that one doctor, thousands of miles from where Jack lives, said the biopsy slides are fuzzy.

I asked about the differences in dystrophies. Would they necessarily be treated differently? Could it just be a question of genetics? Jack didn’t know.

I asked Jack about the birth. He mentioned the strep B infection his wife had, but kept insisting that his son was normal at birth.  I looked up Strep B after we got off the phone.  Birth defects are rare, but possible.

I asked about Max’s well-being — is he in school? Is he progressing? But I realized after about the third question that the conversation about Max’s life was being deflected in each case — always to who wouldn’t help and who wasn’t providing the “right” information to Jack.

My eureka moment came when I tried to suggest to Jack that he needed to be contacting the Muscular Dystrophy Association and others who might provide help — and realized that wasn’t the purpose of the call. In fact, Jack’s interest is less about his son, and more about the blame.

I won’t pass judgment on Jack. I can’t imagine having a child with a very difficult disability, and thinking that it might have been the result of a medical mistake at birth.

What bothered me the most was that Jack was so intently focused on the money he might get if he could prove blame — at the expense of his son’s current well-being. If he could only focus some of that intense energy on helping his son grow, and perhaps even thrive, despite his disabilities….

As Every Patient’s Advocate, I get frustrated because sometimes I just can’t help. I don’t have the knowledge or the means or the resources for special cases like this. Not that I can’t provide resources — I can — but not when there is an ulterior motive.

And — I can plead for priorities — as I did with Jack. I asked him not to let go of his fight because someday it may prove to be the right thing to do. But I tried to redirect the fight into something positive for Max. I asked Jack to reprioritize where the bulk of his energy needs to be.

Jack seemed uninterested. I wasn’t able to give him the answers he was looking for. He was pleasant and thanked me, but I could tell it fell on deaf ears.

Blame zaps us and subtracts from the positives. Refocusing that blaming energy can be incredibly cathartic. Max deserves that from his dad.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Want more tools and commentary for sharp patients?
Sign up for Every Patient’s Advocate email tips
………………………………………………………………..
Join Trisha in the Patient Empowerment Forum at About.com
………………………………………………………………..
Or link here to empower yourself at
EveryPatientsAdvocate.com
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Psych Drugs, Shady Practices and One Fixer

In 2003, after taking Zoloft for six weeks to help him sleep, Woody Witczak, a vivacious, intelligent, energetic and happy man, hung himself — and died.

…………………..

Last evening I leafed through my December issue of Consumer Reports. There on page 65 was my friend and colleague Kim Witczak, Woody’s widow, and one of the most active fixers I know.

The article featured Kim’s work to clean up the rules by which drugs get approved by the FDA. Since Woody took his own life, and because it seemed so completely outside anything Woody ever would have done, Kim knew there must be some kind of dark force, some kind of shady coverup that contributed to the tragedy.

She learned several things. She learned that Zoloft is an antidepressant, not a sleep aid, and it had been prescribed to Woody “off-label.” Woody had just begun working at his dream job. His sleeping problems were related to his excitement and overwork — not depression problems. Kim questioned how Zoloft could have been prescribed for him.

Digging further, she learned a few things about Zoloft and even more about the FDA and its approval process for new drugs. Included were the following: pharmaceutical manufacturers could apply for approval to make drugs available to patients by showcasing only those clinical trials that show the drugs “work.” They were able to cover up any others that didn’t work out so favorably. Also, once a drug was approved, the FDA could request follow up studies, but had no way of enforcing those requests.

It also turns out that among the people who have the power to approve or disapprove any given drug, are people who may benefit financially from the sale of the drug. Think about that for a moment…. A panel of professionals is supposed to objectively determine whether a pharma company can make millions or billions of dollars on a drug — and some of those people will be the ones who make money when it’s sold.

Objective? I think not.

And here’s a big one, too — more than half the FDA’s budget for considering whether or not drugs should be approved comes from the fees paid to them by the pharma companies. So, when paired with the revelation above about who sits on the review panels?

Scary, isn’t it?

In September, the laws changed for how drugs will get approved, and what follow up will be required. The law goes into effect within 18 months. Kim was a large force in getting the changes made, as was Consumer’s Union, the publisher of Consumer Reports.

The changes affected were: All clinical trials used to prove a drug is — or isn’t — safe will be made public. There will be some new regulations on the drug ads we see. All print ads will have a toll free number and a web address to help consumers report problems. The numbers of reviewers on the approval panel with ties to drug companies will be reduced (but not eliminated). But no change has been made to how the FDA’s budget is put together — meaning — approvals will continue to be influenced by contributions made by the pharma companies seeking those approvals.

There’s not much of a message here for us as individual patients and consumers — except — to be thankful we have people like Kim Witczak who take their pain and suffering from the loss of a loved one and turn it away from blaming and into fixing. You can learn more at Kim’s website, WoodyMatters.org .

Healthcare will be safer because of Kim’s work, and that of Consumer’s Union, too. Fixers at their finest.

  ………………
Want more tools and commentary for sharp patients?
Sign up for Every Patient’s Advocate email tipsOr link here to empower yourself at
EveryPatientsAdvocate.com
  ………………

Unexpected Blessings

This is not a typical blog post. Most often, as I sit down to my computer, I’m thinking about some piece of news, or a conversation I’ve had, or a question someone has sent me to help them navigate their care.

Instead, as I sit down at my computer on this Thanksgiving morning 2007, I’m so very grateful for the many blessings in my life. My own health, the health and happiness of my loved ones. Those are always at the top of the list.

What has changed in the past several years, though, is perhaps the one thing I am most grateful for. In 2004, when I was told I had cancer and would likely be dead within months, I could never have imagined what a gift that could be. A blessing because the doctors were wrong, of course. But an even bigger blessing was learning just why I was put on this earth. That’s a gift most of us never receive in an entire lifetime.

That gift has blossomed into a career — the opportunity to learn more about navigating American healthcare, and share my learnings with my readers and listeners. The opportunity to meet knowledgeable and helpful people including medical professionals, media professionals and most certainly my fellow advocates — those who work on behalf of all of us to make healthcare safer and fairer.

You’ve heard about the “attitude of gratitude” — well — that’s so very me. It’s very much about moving from blamer to fixer, and realizing that sometimes our biggest gifts in life are the people and events that cause us the most difficultly, then provide us with the most opportunity. They are truly unexpected blessings.

I wish you and yours a most blessed Thanksgiving today. And if you aren’t American, then I wish you the opportunity to consider your own blessings on any day you choose. Blessings know no geographic boundaries.

  ………………
Want more tools and commentary for sharp patients?
Sign up for Every Patient’s Advocate email tips

Or link here to empower yourself at
EveryPatientsAdvocate.com

  ………………

From the desk of (11/10/07)…

Some miscellany from the week, not requiring blog posts on their own….fromthedeskof.gif

Heard this week from a young man in Central New York State where I live. He’s a young adult cancer survivor and has begun a social network for other young adult cancer survivors, ages 18 to 40: http://yacscny.wordpress.com . If you are a young cancer survivor, log on and see what Daniel is up to….

…………………………..

Veteran’s Day is coming up — a perfect opportunity to thank a veteran or member of the military service. Regardless of your politics, we owe a debt of gratitude to these fine men and women who have worked so hard to protect our freedom. One of those freedoms is to make our own healthcare decisions — an important one!

…………………………..

And speaking of Veteran’s Day — my radio show tomorrow features an interview with Dr. Ross Moquin who retired as a commander after 25 years in the Navy. He is a surgeon who treats traumatic brain injury — fascinating conversation about the procedures that were developed while he was in the Navy, and how they are being used to help civilians now, including stroke victims. You can listen right on your computer by linking here.

…………………………..

announcemt.jpgAn Every Patient’s Advocate milestone this week: hit the 30,000 visitor mark on this blog since January. If you’ve been a regular visitor, I thank you — and hope you feel as if you’ve learned something. If so, will you share by making a comment? I’d love to know what has — or has not — been helpful.

…………………………..

… and stay tuned for a BIG ANNOUNCEMENT soon! My reach is about to be extended big time — and you, my faithful readers will be among the first to know….

  ………………
Want more tools and commentary for sharp patients?
Sign up for Every Patient’s Advocate email tips


Or link here to empower yourself at
EveryPatientsAdvocate.com

  ………………

Victim or Survivor?

My friend and colleague Ilene Corina is the director of PULSE of NY (Persons United Limiting Substandards and Errors) and issues a newsletter each month. I’ve asked her permission to share the following from her most current edition.

You’ll see it’s another way of explaining blamers and fixers. Well put, and very clear:

I hear the term “victim” often enough and it is a word that makes me just cringe. When I hear that term I picture the victim lying bleeding in the street or behind a concrete wall enslaved in a medieval prison innocent of their convicted crime. I don’t think of myself as a victim of medical error, but my son surely is, since he is dead and can no longer help others learn from the mistakes made by the system that has failed so many of us.

I am a survivor. Survivors get up in the morning and work, play and attend to their business. Many survivors find ways to help others who feel victim to the experience that has pulled them down. Whether it is a disease, natural disaster or a crime, the survivor picks himself up, brush himself off and says “what can I do to make this world a better place” sometimes just one person at a time. A survivor still cries, because that is nature’s way of cleansing and relieving the tension. A survivor still gets angry, because that is the way to learn when things aren’t going right. A survivor still gets tired, because the body needs time to rest but gets going each time to start again.

Victims often get stuck. They can lose direction and the anger stays with them. They may sleep more or use their anger to try to improve the world. Often, it is the survivor who hears the victim and focuses the victim’s needs in a positive and constructive way to help improve the world.

Whether a victim or a survivor, you are important and by sharing, you will relieve yourself of a burden that does not have to rest on your shoulders alone.

Thanks Ilene.  Good food for thought.  I appreciate you, my friend — the consummate survivor.

(see Ilene’s blog at:  http://patientsafetyadvocate.blogspot.com/)

………………
Want more tools and commentary for sharp patients?
Sign up for Every Patient’s Advocate email tips
Or link here to empower yourself at
EveryPatientsAdvocate.com
………………

Doctors Complain About Complaints

… and I don’t blame (some of ) them.

I’ve seen several articles in the past few days about this topic — that doctors are feeling bashed and unappreciated.

Texas physicians blast anonymous complaints

Closer look irks doctors

Some doctors have their patients complaining on their behalf.

I’m even seeing this about doctors who are overseas — yes — where universal / national healthcare works: Top doc vows to clear name after witch hunt

There is nothing new about doctors getting upset at the fact that patient consumers finally have a public voice (through the internet) that helps vent their frustrations. Nor is it news that doctors don’t like lawsuits when they’ve committed errors. In fact, there used to be a website called www.doctorsknow.us that was established specifically to help doctors blacklist patients who they thought were too difficult. The website was taken down a few years ago, and it’s very interesting to read the comments made by doctors who were supporters.

[And, in fairness, this is not true for all doctors.... nor is it true for all patients. The takeaway here should not be doctors as a whole group -- instead it should be only about those doctors who complain about their patients. ]

So we have patients complaining about doctors, and doctors complaining about patients and everyone complaining about the costs of healthcare, and the dysfunction of the “system.”

Yup – turns out this is another blamers and fixers discussion.

My observation: most complaints are rooted in mismanaged expectations that regard communications and the time/money conundrum.

Do you know of anybody who is happy with healthcare these days? Even if you have a dread disease, and get cured, you’ll complain about the cost, right?

Patients no longer “need” a medical error to get upset. The complaints I hear are that the doctor won’t spend enough time with them, or doesn’t answer all their questions, or always seems in a hurry.

Doctors are frustrated that their patients don’t understand the time constraints they are under, squeezed by health insurance reimbursements that are too low, so the doctor is forced to see more patients each day.

Doctors tell us our outcomes are less than expected because we aren’t complying with their recommended treatments — they complain that it’s often the patient’s fault when treatment doesn’t work because patients aren’t doing as they are told.

Doctors further complain that they are competing with the internet to diagnose and treat patients.

So here is some advice for patients:

Understand that the financial pressures on doctors are beyond anything they have ever been. It used to be they would see, maybe, 20 patients in a day (21 minutes average per patient). That meant they could spend a good deal of time with you to answer your questions. Now, if they want to stay in business (and we need them to!), they must see more like 50 patients in a day (8 minutes per patient) or they won’t have enough income. If they don’t stay in business, we won’t have a doctor to see — and that is already a problem — a shortage of doctors in many areas of medicine. We patients need to adjust our expectations, respecting a doctor’s time constraints.

Knowing you have less time with your doctor, prepare well to see him. Make a concise list of symptoms to report and a concise list of questions to ask. Manage your doctor’s expectations by telling him you have those lists. When he interrupts you (within an average of 18 seconds into your meeting) — then ask him politely not to interrupt. Remember — he’s used to interrupting, so you need to let him know that’s not acceptable.

Do not allow your doctor to provide an instant diagnosis. Make him think outside the box. When he provides you with a diagnosis, ask “what else can it be?” and ask him to explain why it isn’t the alternatives.

Approach your care in a collaborative way. If you have looked up symptoms or diagnoses or treatments on the internet, then warn your doctor that you want to discuss your findings. Manage his expectations that you want to have that discussion but that you are willing to make it a short discussion.

Comply with your co-decided next steps. If you and your doctor agree on what those next steps are going to be, then you have no excuses but to comply. If you run into problems, let your doctor know immediately, otherwise he will think it’s your fault that you aren’t getting better.

Here is some advice for doctors:

Please understand — I GET that you have less time per patient. I GET that your reimbursements squeeze you. I GET that you went to med school and the internet didn’t. I GET that patients are demanding more from you when you have only less time to give. I GET that your practice approach has had to shift with these new realities. I offer this advice to make your lives easier:

You will be less inclined to find problems with your patients if you begin to respect them more. They are sick or hurt. They are scared. They are looking to you for answers and guidance. You are treating them like cattle. You are interrupting them. You aren’t thinking outside the box. And yes, I realize that in fact, if you don’t do it right the first time, you just get paid a second (or third) time for doing it again. But respecting your patients should still come first.

Respect also means it’s time to stop interrupting. I GET that you are interrupting because you know your time is so short — but don’t. If you want to speed things up, then tell your patient that’s what you are doing. “Mr. Jones, please tell me quickly what you learned because I want to spend our time finding the answers for you.”

Understand that the internet is here to stay. It’s not going away. Instead of fighting it, or getting upset with it, why don’t you guide your patients’ use of it? Manage their expectations about YOUR reactions. Provide them with a flyer about the use of the internet that asks them not to bring you stacks of printouts, and guides them to good websites for their use?

When patients don’t get better, don’t automatically assume it’s because they didn’t comply. Yes, I GET that compliance is a big issue — but assuming non-compliance is once again, a respect issue. You can get to that information by asking gentle questions mixed in with symptom or test result questions. By assuming non-compliance, you instantly put your patient on the defensive, and that throws up more roadblocks.

Advice for all:

Next time you are tempted to complain about your doctor, or your patient — ask yourself if the basis stems from communication, or if it stems from time/money constraints. In either case, the “fix” is not the opposite party, the “fix” is your approach. Take a deep breath — then see if you can fix it.

That’s what fixers do. Because complaints and blame don’t get us anywhere.

  ………………
Want more tools and commentary for sharp patients?
Sign up for Every Patient’s Advocate email tips

Or link here to empower yourself at
EveryPatientsAdvocate.com

  ………………

More Evidence for the Positives of Apologies

Those of us who work in patient empowerment couldn’t help but notice the results of a Harvard Medical School study released this week about what happens to a relationship between doctor and patient when the physician makes an error. The story was reported in US News and World Report the New York Times and other outlets.

Originally published in the New England Journal of Medicine (NEJM), the commentary called Guilty, Afraid and Alone: Struggling with Medical Error basically says that when a doctor commits an error against a patient, trust is eroded and doctors feel guilty. (Did anyone question this?)

Turns out that in many cases, the patient’s family members feel guilty, too, for not protecting their loved one. Even nurses who lost family members to medical errors reported feeling isolated, and fearing their loved one was going to receive substandard care due to the guilt of those who had imposed the errors. The words “fear” and “rude” and “mistreatment” polka dot the report.

What’s the bottom line? Once again we hear the benefits of apologies by those who have violated trust. Nothing new here at all. Groups like Sorry Works have been talking about this for years. Thirty-four states have enacted legislation to grease the skids. Those doctors who understand the dynamics, even for their wallets, are beginning to get the picture.

Test it here yourself. Another story published within days in Miami, about a 3-year old who died at the hands of medical test administrators — even though the family questioned the procedure. So very sad. And a good illustration of how we feel on the other end of the tragedy when responsibility is taken by the guilty party. Apologies are plentiful, restitution is being made. By the end of the story, you’ll feel bad for the offenders, too — although not nearly so sympathetic as you do for the family, of course.

Doctors and providers — please pay attention. Your patients truly need you to understand the guilt aspects of errors, and then step up to the plate. Your careers, and our health, depend on it.

  ………………
Want more tools and commentary for sharp patients?
Sign up for Every Patient’s Advocate email tips

Or link here to empower yourself at
EveryPatientsAdvocate.com

  ………………

A Lemon Law for Medical Consumers?

From Hannah Montana to drive-by shootings, there is plenty of interesting news in Cincinnati, Ohio today.  But to me, your friendly patient advocate, an even more fascinating topic was reported in Cincinnati’s news this week:  the possibility of a lemon law for medical consumers.

To me, it’s one of those “now why didn’t I think of that?” ideas!

A woman named Betsey Exline gets the credit here.  Last spring she went for a routine colonoscopy, which was botched, and she ended up with emergency surgery and a stay in the hospital for eight days. 

Nine doctors, the emergency surgeons and the hospital then billed her for the insult.  Can you say “unmitigated gall?”

Should she sue?  She could, although lawsuit cost estimates range into five figures and she’s not getting any younger.

Instead, this very wise woman took a very different approach.  Bless her heart, she’s not looking to make money from this error which she will suffer from for the rest of her life.  She just wants someone to pay her bills.  She just wants someone to recognize that it should not be her responsibility, or her insurance company’s responsibility, to pay for the errors caused by others.

Hello?  Duh!  That just makes so much sense!

So Betsey contacted her local Ohio state representative and is now pursuing the introduction of legislation that would, in effect, force those who caused the errors to pay for the errors — but not through the courts.  Instead the legislation will create a consumer protection process for medical errors. Those who caused the errors will be required to cover the costs that result from their errors.

And if it becomes law?  The doctors win because it will cut down on lawsuits.  The insurance companies win because it will cut down on lawsuits, too.  And the patients win — at least to the extent they won’t have to pay those unfair bills.

(And who will stand in the way?  Of course, those lawyers who handle medical error victim lawsuits.  but that’s another blog post for another day.)

Wish I was in Cincinnati, Betsey.  I’d find you — just to shake your hand.  You’re a fixer of the first order.

………………
Want more tools and commentary for sharp patients?
Sign up for Every Patient’s Advocate email tips

Or link here to empower yourself at
EveryPatientsAdvocate.com

………………

One Woman, 6 Missed Diagnoses, A Lesson for Us All

You know I’m a fan of Jerome Groopman, the author of How Doctors Think.

In his incredibly eye-opening book, he tells of trying to get a correct diagnosis for his own health problem, and the fact that four doctors had four different diagnoses for him, and four differing ideas of how to treat it. As an oncologist himself, he was appalled. It spurred him on to consider the questions of how and why doctors diagnose and treat medical problems and disease.

I was reminded of Dr. Groopman when I read Carla McClain’s story in the (Tucson) Arizona Daily Star about a woman, Norma Greer, who just KNEW something was wrong with her despite the fact the SIX doctors told her she was OK. Eventually, armed with one-hour’s worth of research from the internet, Norma found a doctor out of town who diagnosed her Inflammatory Breast Cancer. She’s transitioning through treatment for it now, but most certainly, six week’s worth of IBC missed diagnoses have shortened her life.

Norma’s lesson is a lesson for anyone who “knows” something is wrong with them. We have those little voices in our heads. We know when we’re being blown off by doctors who, for whatever reason, don’t take the time to look further than what pops into their heads. We need to trust our intuition and take action.

If we don’t take responsibility ourselves, no one else — not even the professionals we’ve hired — is going to do it for us.

Sadly, we suffered through this with my mother-in-law a year ago. She was miserable with what her doctor (and those of us who don’t know medicine) thought were stomach, gastro-related problems. In fact, she died of ovarian cancer this past July — which had been at the root of her stomach upset and was too advanced to treat by the time it was finally figured out.

My own misdiagnosis was just the opposite — still a lesson, but not in the same way.

Norma — thank you so much for sharing your story with others. You are a fixer in one of the best ways.

  ………………
Want more tools and commentary for sharp patients?
Sign up for Every Patient’s Advocate once-a-week or so email tipsOr link here to empower yourself at
EveryPatientsAdvocate.com
  ………………

. . .This Blog Has Moved!. . .

Where did everything go?

Not far.
We just relocated, that's all.

You can find every post and comment from this blog
-- and plenty more --
at the new location of the
Every Patient's Advocate Blog.

Just click here:

EveryPatientsAdvocate.com/blog

Please don't forget to change your feed, too!


Follow

Get every new post delivered to your Inbox.