Archive for the 'Family' Category

How Supermarket Purchases Violate Your Privacy and Increase the Cost of Insurance

It’s cold and wintery.  Time to hunker down with plenty of comfort food and a toddy or two…  and while we’re at the store, let’s pick up a bottle of aspirin, some stomach acid medicine, and maybe even plenty of dog food for the rottweiler….

A swipe of both your store’s loyalty card (gotta get those discounts!) and of course, your debit card to pay for your goods — and home you go to lay in for the weekend, read a good book, and max out on all that junk food and alcohol.

Come Monday, your purchases, aligned with your identity, will be sold to a health insurer, or life insurance company, perhaps an auto insurance group….  and they will have that information to review should you contact them to make an insurance purchase.

Find the rest of this post at its new location:

http://www.trishatorrey.com/2008/01/03/how-supermarket-purchases-violate-your-privacy-and-increase-the-cost-of-insurance/

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Dad — an Empowered Patient Sets a Fine Example

…. and today is his 81st birthday.

When people ask me how and why I began doing patient advocacy and empowerment work, I first tell them about my misdiagnosis, and then I tell them it’s because I learned how to be an empowered patient from my dad.

Since beginning his battle with cancer in 1986 — yes — more than 21 years ago — Dad has battled his illness every step of the way. From learning everything he could, first through the libraries, then through the Internet, to partnering with his doctors but retaining decision-making for himself, to second guessing problems with a drug he was taking, then figuring out he’d been given the wrong instructions, to doing all the same for my mom to help support her through her Alzheimer’s disease… yes… dad is the epitome of the empowered patient.

Learn more about the steps he has taken here….

Then join me in wishing him a Happy Birthday!

I’m proud of you, Dad…. with love…. from your eldest 🙂

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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.

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Stealing Hope – Managing Expectations

While visiting Sarasota, FL a couple weeks ago, I missed this article in the New York Times, When Doctors Steal Hope.

Maybe it’s just as well. I would have been one of the first to add my comments, but maybe my own blog is a better forum for that? My advocacy colleague Julia Schopick made her comment — well thought out, as usual.

The article is a blog/commentary about what happens when doctors tell a family that a loved one will die, only to have that loved one recover and go on to heal. In other words, the doctors have stolen hope — for no good reason, it might seem.

I had the same experience — I was told I would be dead within months and that I needed chemotherapy which, even if I had it, would only buy me an extra year of life.

So did my doctors steal hope? Actually — only to an extent. In fact, because I am of the personality I am, I saw my diagnosis instead as waving a red flag in front of me which just p*ssed me off enough so I could prove them wrong!

That said — what the real bottom line is to this issue is the management of expectations. It’s fairly simple concept, yet, it is violated day in and day out by all parties all the time. It’s true in medicine, but it’s also true in any aspect of life where communications is important — in the workplace, at home, with your spouse or sigO, your children, your friends, anyone at all.

A simple metaphor: Little Johnnie wants a new bicycle. His mother tells him that if he gets all As on his report card, she will buy him a new bicycle for his birthday next July. Little Johnnie works very hard in school and gets one A after the next A after the next — BUT — on one of his report cards, he gets a B in math. He’s very upset with himself.

But Johnnie’s mother buys him a bicycle for his birthday anyway — because the point was for Johnnie to work hard, and that’s what he did.

In this case, his mother managed Johnnie’s expectations — he knew exactly what to expect, and he knew what his role was in making it happen. Ultimately, even though the outcome was a bit different from what was expected, it was win-win for them both.

Suppose Johnnie’s mother had just told Johnnie he had to “work harder” or “get better grades” — meaning — she wasn’t specific enough? Johnnie might have thought Bs were OK — and that would not have gotten him the bike. And everyone would have been disappointed.

The point to this story is just that when we are sick, or a loved one is, there are ways our expectations can be managed to make sure we fall within a set of expectations. Clearly, patients don’t always have control over their health. And clearly, the health care professionals can only do so much. BUT — there are boundaries that can be expressed — for example:

“We’ll keep an eye on your husband, Mrs. Smith. If his blood pressure drops again, we might lose him…. but if it stays stable, there is a better chance he will recover. That’s not a promise because we never know what else can go wrong — but we know his blood pressure needs to stabilize to give him his best chances.”

Then — because Mrs Smith is a wise patient — she will repeat back to the doctor exactly what she heard. (and if the doctor is wise, he will ask Mrs. Smith to repeat it back to him to be sure she is clear on it.)

And if the doctor doesn’t give Mrs. Smith those parameters? Then she should ask! “Doctor, what’s the worst case scenario? And what’s the best case? And based on your experience, what is the expectation?”

It’s communication — plain and simple!! Subtracting –OR providing hope is about words — not about medicine. And asking for clarification, and management of expectations, is how an empowered patient works collaboratively with her doctors.

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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/)

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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.

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