never say never


This past week I traveled to Atlanta for an industry meeting. The atlanta.gov website informs me that “today, in the 21st Century, Atlanta is the ‘city not too busy to care’.”

I think any slogan that’s based on a negative – “Atlanta – not too busy to care”; ” Atlanta – not as humid as the Everglades”; “Atlanta – not the city of too few grits” – is a bad idea. It’s akin to praising your child for a major accomplishment by saying, “Well, sweetheart, it’s not a national track and field record you set, but first in the state is ok, I guess.”

Anyway, while in The City That’s Not Too Busy to Care, I had breakfast with a friend who, like me, is an amputee. We chatted about a variety of topics, but a quick, almost throwaway story she told stuck with me afterwards. Like Atlanta’s poorly written motto, the punchline of her tale centers on the negative.

She was attending the trade show as a patient model for a manufacturer, wearing an advanced prosthetic component that she has used for several years. This device, in combination with the work of her prosthetist, has fundamentally improved her life. Her story is a wonderful example of how the right technology and good care build on each other to  reshape how she thinks about herself, what activities she chooses to do, and her overall sense of well-being.

So, it was with the dual emotions of disbelief and anger that she told me the following:

I’m standing at the booth and a prosthetist walks up to me. He looks at what I’m wearing and says, “Oh, I would never fit any of my patients in that.” And then he walks away.

She looked at me, bemused and shook her head.

I said to myself, “Really? You would never fit this on any patient, no matter what?” What kind of professional could say something like that?* To someone who’s using it?

I nodded my head in agreement at everything she was saying and thought to myself, “Lots of them.” Because I’ve heard similar sentiments over the years in my discussions with prosthetists. This goes back to a central concept I’ve discussed many times before in these e-pages: people who are experts, who “know everything”, close off options; people who adopt a neophyte’s attitude – even if they’re not beginners – on the other hand, always learn something new.

I shuddered as I heard my friend tell the story, because the person who said this to her could theoretically be treating me. And he’s definitely treating people like me.

I lost my leg just as the first microprocessor-controlled knees hit the U.S. market. Because I owned a prosthetic facility and now work in the industry, I’ve had the opportunity to try many prosthetic components over the last 15 years. As a result, I’m acutely aware of how different (read: better) my life is today in 2012 because of the products available to amputees than it was in 1997, when I received my first prosthesis.

The prosthetist who says, “I would never use [product x]”, or “I would never fit you using [approach y], scares me much more than cost shifting expenses towards consumers, the impact of health care reform, or the long-term viability of U.S. health care. As a person who depends on a prosthesis to walk, I also depend on my prosthetist to be a champion of open-mindedness when it comes to finding appropriate clinical solutions.

The world is rarely binary: yes/no; black/white; right/wrong. I think the world of patient care is even less so. While prosthetists may prefer certain products because of positive past experience with them, ease of fitting/training the user, and profitability (or, more commonly, some combination of all three), that should never become a proxy for treating every amputee the same way. This is especially true in a world where payment for care will increasingly be predicated upon demonstrating quality outcomes; prosthetists simply can’t afford to narrow their treatment options when some of those options create the outcomes that will allow them to remain in business.

If you ask patients – any patients, not just amputees – what they don’t like about their health care provider(s), I suspect one of the first complaints you’ll hear is that they hate (1) sitting in waiting rooms long past the scheduled appointment time, (2) having some sort of assistant deal with most of the work once they do make into a treatment room, (3) having the doctor rush them through the appointment talking like the guy from the old Federal Express commercials, and (4) leaving with the sneaking suspicion that cattle get more individual attention and care then they just did. Proudly announcing to a patient at a national trade show – a patient who hasn’t asked for your opinion, by the way – that you’ve proactively eliminated a treatment option forever for all patients isn’t a badge of honor: it’s a brand burned into a bovine rump.

I’m not saying all prosthetists are like this – they’re not. And I’m not saying that the guy who made this statement to my friend treats his patients like cattle – maybe he just said something that, in retrospect, he shouldn’t have. But I’d ask him and all prosthetists to remember this: we want options. While we’ll willingly listen to your  measured, reasoned opinion about the strengths and weaknesses of a device, we don’t want and won’t accept forever/never statements. We’re not cattle.

———————————-

*In the interest of clarity, I’m not in favor of new technology just for the sake of new technology. As a patient, I want the market – i.e., prosthetists – to weed out products that, no matter how high-tech, fail to deliver qualitative improvements to amputees. However, like many of the more refined, newer technologies that different prosthetic manufacturers are bringing to market, the technology being used by my friend has passed the professional “sniff test”. The question the device presents isn’t, “is it good enough for amputees?”, but rather, “which amputees is it best for?”

2 thoughts on “never say never

  1. David, I have experienced that in past treatment from who I thought were quaified Prosthetist professionals, and it turned me off enough to find someone else to be treated by. Thank you.

  2. My experience was reverse : ) I always asked for a full slam full extreme load prosthetic arm – one that would hold up average guy average everyday loads that normal people such as me have (Otto Bock speak ~ not warranty covered insanely extreme loads). Until the prosthetists realized that I meant what I said (seems like listening skills can give a business advantage after all) we had taken our differences to town over about three years and they had given Otto Bock a chance to damage their name by letting me vibrate, boing, squeeze, pull, deform and otherwise use their parts to full damage and as they were obstructive and rejected my immediate feedback, a series of hard to negotiate documents including pictures and videos, resulted. That was never my first idea. All *I* wanted was that option on the far far end of that spectrum of options where it said “blizzard 16 ton action”. If then it turns out the prosthetist recommended a myo arm for me, well, I sure tested that and looked into that as well. I think that a lot of time waste could have been avoided if the prosthestist would have actually listened, and if the industry would not have been THAT greedy they’d turn a cold shoulder and deny requests and act as if I was making things up. Later substantiated but unsigned rumors surfaced that representatives were clearly aware of bad components manufactured in far east but not quality checked – clearly in line with my observations. Today I am of the firm conviction, that I am ready and prepared to document to a nauseating degree, that the prosthetic industry is NOT about options but about money, and they are not accepting of less lucrative component options but actively ridiculing wearers, and actively denying engineering faults. Furthermore, parallel imports to Switzerland are denied to end customers by companies such as Ossur – which is extremely clearly against Swiss trade law. If you depended on abusive, fraudulent and mechanically inferior manufacturers for your prosthetic arm, then finding kind words for wiggly, massively expensive, undertested, (IMHO) useless and overhyped high tech options such as a Michelangelo arm is asked too much in my view. They do not respect my choice, they do not support my options. Otto Bock won a Red Dot award for the Michelangelo hand but did not care to inform the person that submitted the patent for it and who designed it while working at their company. That company supported an amputee fetishist sadomasochistic photo exhibition in Austria. If you add that all up, I think a REAL option for me is moving away from these companies’ prosthetic component gunk and start doing business with engineers and true sales people. I saw the Otto Bock Michelangelo guy go heng, heng, heng trying to maintain a posture while riding his bike mildly uphill. For that I now wear a Mert hand and life is good : )

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