At What Point Does "Personal Preference" Supersede "Proper Fit"?

[Joseph Tell]

In our world as provisioners, we are constantly looking to perform the “perfect fit” for our patient and sit them in a wheelchair that has them sitting upright, fully engaged with their environments and helping promote positive development – be that skeletal-muscular, cardio-vascular, respiratory, digestive, etc. etc. Additionally, every patient is unique, and many patients have specific use-cases in their lives that requires unconventional adaptations or techniques in order to perform certain ADL tasks.

But what do you do when confronted with a patient who has managed a long-term disability and developed an unhealthy or dangerous set of habits to perform daily tasks and is very resistant to changing their routine? Do you strictly follow “best practice” procedure knowing they will revert to their default, dangerous positions or behaviors? Do you make compromises to accommodate bad technique so as to mitigate potential health risks? And if so, how far do you go on compromises – how much control do you give the recipient on how YOU perform their wheelchair fitting?

Does “do no harm” end with your session with the patient or does some responsibility carry over into their daily use of the equipment you give them beyond simple training and education when you know they are placating you?

[Joseph Tell]

I will say, in regard to my own practice I do make compromises on an “ideal” seating to various degrees. I have certain “red lines” that I won’t cross such as a seated position that applies excessive pressure to any body part or positioning a user with bare skin pressed against a hard surface, or “making brakes loose and easier to deploy” as one patient requested. Essentially, anything that could result in a pressure sore or dangerous operation of their wheelchair. But I HAVE given a 40-ish patient with severely contracted tendons in his leg an over-sized wheelchair with a thick cushion so that he could sit cross-legged in it. He has sat in this position for almost 3/4ths of his life and there was absolutely no way he was going to sit with his feet on the footplates, and should he get a properly fit chair he (and I WATCHED him continually try to do this) would bring his legs up and essentially squish his lower half into his chair, applying a LOT of force to the armrest with his legs. At best he would develop even worse distortion as his hips were now rotated and tilted and at worse he would develop pressure sores on his thigh, knee or ischial tuberosity.

Was this proper procedure? Most DEFINITELY not. Did this improve his posture? Overall, I would argue that it did not. My perspective tends to divide patients up into two categories – corrective and maintenance, with the majority of patients being “corrective”. My goal for this man’s fitting would be to maintain his capabilities and avoid degradation as opposed to a “corrective” patient wherein I would be trying to actively affect his posture or positioning. And that’s not to say that there aren’t corrective aspects to his fitting, but overall I would be trying to maintain and preserve as much independence as possible.

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I agree with the statement above where the 40-ish person received the best possible equipment after every circumstance was considered.I have frequently over the years had to compromise, especially in less resourced areas regarding the ideal seating position. I always do however insist upon safety first and this involves a detailed conversation with the person receiving the wheelchair and any family available, husband, wife, parents, even children when appropriate. Ultimately the responsibility for following instructions is removed from our control as we do not live with the people being served. I am responsible for teaching, training and thoroughly communicating with the person(s) concerned what my knowledge and experience knows to be the best for their situation.

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I like to believe that most clinicians would say that they all want what’s best for our patients.
However we can’t say that, sometimes, a compromise is needed to establish the base grounds to be able to help the user grow. Sometimes, due to their long habits, its hard to explain to them why they should change certain aspects of their behaviour, so in these cases I always try to explain to them all the possible results of each option, and then we build from there. I ask them for something small, and once they’ve achieved it, I move on to another level. We’re talking possibly about users that have long fixed habits, and these habits can’t be changed overnight.

However i also ask myself. If i was advising a patient with a respiratory malfunction and he needed a respirator, i would advise and prescribe the best suited respirator for that case. However if my client said to me that he wants the other model, which is not suited for him just because he likes “the sweetish smell of the oxygen” that comes from that other product, i would be totally against that prescription.

So, where do we draw the line? Isn’t a wheelchair a Medical Device? Should it not be used correctly by the user? Should we keep compromising just to make them feel more comfortable? Is it un-ethical to take away the freedom of choice from the user and reduce their “perceived” comfort?

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