Wednesday, February 4, 2015

The Meaning of the Challenge: It's about More Than Thickened Liquids

by: Suzanne Gordon

The other day, with much trepidation, I took the Thickened Liquid Challenge. As a well known wimp, I only did the one shot version. And believe me that was enough. I could barely get it down. I can’t imagine what it would have been like to attempt to drink glass after glass hour after hour. In fact, I did the challenge in Eric Widera’s office and when he made me my first dose it was so thick that it wouldn’t even pour into my mouth. Thusly showing that there is more to a challenge than meets at least these two pair of eyes and two pretty sharp brains. Imagine an elderly person or their caregiver trying to mix up this potion on their own and trying to get it to be just the right consistency. And then imagine drinking it.

I took this challenge not as a provider or nurse or speech therapist who might one day prescribe such a so-called remedy. I took it as a patient. Although I am a journalist who writes about healthcare and a patient safety advocate who lectures widely on teamwork and patient safety issues, I was motivated to participate in this effort and recruit others to do the same because I think of myself primarily as a patient. Because I am a proud graduate school dropout, I only have a lonely BA after my name and often find myself in the company of folks whose names are followed by an impressive list of letters from the alphabet. And there I am, Suzanne Gordon BA. I am therefore always tempted to put the following after my name – SP or PP as in Suzanne Gordon, BA, SP, PP. This translates into Suzanne Gordon, Sometime Patient or Potential Patient.

What really encouraged me about this challenge as a PP and SP is the fact that its goal seems to be to help cultivate in clinicians and other health professionals the art of imagination and to recognize the value of experience. Throughout their education and socialization healthcare professionals of every stripe are taught the facts, the data, the evidence upon which to base practice. But what ever happened to experience – the experience of what we as patients go through – often suffer through – when we follow “orders,” “comply” with treatments, and “adhere” to various recommended regimens. I am cognizant that oncologists who prescribe high dose chemotherapy shouldn’t have to go through four courses themselves to understand how awful it is or that orthopedic surgeons shouldn’t have to have their hips replaced before they replace one in an elderly patient. But it would great if physicians, nurses, speech, occupational, and physical therapists, nurses, and many others got at least a tiny taste of what they ask patients to do when they give us our marching orders. That’s why this challenge is so important. It is a realistic step forward in the effort to create patient centered care. Unpalatable as the concoction is, it takes only a minute to mix it up and another to drink it down. You can do the full challenge or a much- abbreviated version. Both get the point across.

And that’s the interesting part. The point is not only about the experience of implementing this particular remedy for swallowing problems. To me there is a much larger and more important point made in this challenge. Don’t ask your patients to do something -- particularly something for which there is little known benefit and perhaps a great deal of harm – if you don’t have a clue what it means to the patient. It helps those who deliver healthcare understand that their work should not be about giving “orders” and expecting patients to follow them (and then perhaps judging patients to be bad, or god forbid “Difficult” when they don’t, maybe because they actually can’t). Their work should be that of negotiating about treatment options with patients. And that negotiation should always include an understanding of just what it might mean to the patient to actually follow the recommended course of action. Physicians, nurses, and many other healthcare professionals too often try to normalize the abnormal to their patients with a kind of maternalistic or paternalistic – “don’t worry dear it won’t be that bad.” Well guess what, sometimes it is. Wouldn’t it be better to either find other options or at least acknowledge the difficulty rather than pretending that “discomfort” isn’t pain, or that drinking a gruesome concoction like the one I volunteered to swallow is no big deal at all? Thank you GeriPal for doing this. I hope this challenge expands to many others. It has already generated a valuable conversation that is long overdue.

Note: This post is part of the series on the #ThickenedLiquidChallenge.  To watch the videos of this challenge go to our original post here, or check out the videos on YouTube:


Anonymous said...

This is such practical as well as compassionate counsel. Thank you for advocating so well on behalf of the patient.

Anonymous said...

Hi, I teach dysphagia to undergrads/masters SLPs at uni. As part of the course, they have a workshop on mixing fluids (to see how hard it is!) and they have to consume a range of different thickened fluids. I also get them to feed each other and discuss this experience. Students comment that this session is one of the most useful experiences in the subject. I really hope that they hold the memory close as they begin to work with real people. My slogan: "If you haven't tried it, you shouldn't give it to someone else!"