Illusion of Choice

I was reminded of the illusion of choice the other day. My father-in-law was deciding on dinner from the “soft foods” available on the hospital menu. I was surprised at how many tasty sounding options he had, even if he was restricted to soft foods. While he agreed he had more options than you might think, what he really craved was a salad.

It brought to mind getting my then six-year old daughter dressed for school in the morning in a timely manner because it also involved the illusion of choice. The night before we would select two outfits and the next morning she could choose one of them. It was simple, straightforward and it worked, until … the day she refused to accept that there were only two choices available.

See, the illusion of choice only works when we accept that we will choose from the options presented. In my father-in-law’s case, he felt he had no choice so he will stick to the soft foods for another couple days. The alternative would be detrimental to his health and he accepts that reality. The day my daughter realized she had an entire closet of options, she demanded to know why she had to limit herself. And, really, that is the question: why do we impose limits, when should we simply accept this is good for us, and when do we push back?

Let’s apply this to a treatment plan or more specifically to medication that has been prescribed to treat an illness. While we may be presented with more than one option, generally physicians have a “go-to” drug to treat a particular ailment (when medication is warranted). As patients, we are often so relieved to be diagnosed and know we can be treated with medication, we go along with it and wait eagerly for relief from the symptoms of our disease.

Here’s a question: how many people read the warning labels on their medication? I’m not talking about just on the bottle, but the multiple pages pharmacists hand out. As I’m sure most of us have, suffice it to say these scare the beejeepers out of me and that’s saying something considering the medications I take regularly.

I know, I know. The drug companies have to list all the possible side-effects even if the odds we experience them are minsicule. Ignore for a moment the risk of stroke, paralysis, or other nasty side-effects and consider the ones that sound innocuous enough like dry mouth, headache, and upset stomach.

From experience, I can tell you that after months of not having a flare-up (of inflammation), I desperately want to get rid of these “minor” side-effects because I will have forgotten how bad it was before. And that’s when we begin to run into compliance issues.

I started with a discussion about illusion of choice so let me get back to it with this: when a patient feels the side-effects are at least as bad as the original ailment, they begin to waver in their commitment to comply with doctor’s orders. Let’s not forget that taking medications are also inconvenient and expensive (especially for those without a drug plan).

Not saying it’s right, just saying it happens. We begin to wonder if there are other options. Sometimes, instead of asking our doctor, we take it upon ourselves to determine what options are available and that is when we run into trouble. Whereas my daughter was checking out her entire closet for options, patients have google.

So what’s the point to all this?

There’s a natural progression that patients go through in their treatment plan. If you recall, my father-in-law decided the soft foods restriction was worth following and it wasn’t going to last forever. Not only that, this treatment was not ambiguous or subject to the individual’s case: you have abdominal surgery, you have restricted diet. Period.

It’s when a patient has a chronic treatment plan that things get a little messy. There is no end to the treatment. There is no single way forward because everyone reacts a little differently to medications. Just like my daughter who wouldn’t accept a two option restriction – take it or leave it – patients in a treatment plan for the long haul will push back and that can be viewed as a problem or an opportunity for greater compliance.

Remember: the underlying premise is that we all want a patient to get better, but what “better” means for one party may be different for the other. We all reach a point when we can’t just tell a person the way it has to be “for their own good”. The illusion of choice works well for a long time, but when a patient starts pushing back, you have to be prepared to change the options to ones that the patient accepts for themselves … and then support them in those choices.

The alternative will always be non-compliance.

 

While We Wait

It started with my hands.

There wasn’t a moment of the day or night without pain. My life was reduced to transitioning from angry, hostile monster to sobbing, incoherent mess.

It was clearly no way to live and I was 42 years old.

In my case, the very last thing my physician tried was a test to see if I had rheumatoid arthritis. That is, after months of negative and inconclusive testing and, always, that uncertainty and pain. When I was finally referred to a rheumatologist I remember the intense relief: finally … I had some answer as to what was wrong with me.

That was before I realized it would be another 29 weeks – or more than 200 days – before I would see the rheumatologist and another couple weeks waiting on the additional blood test to confirm the diagnosis.

I waited because what else was I to do?

It would be another three weeks after formal diagnosis by my rheumatologist before the inflammation, and therefore the pain, would be reduced enough that I could think straight again.

I’m one of the lucky ones – wait time to see a rheumatologist is now at over 2 years.

So maybe you can understand why all the hullabaloo about wait times always makes me smile. It’s not a happy one by any means. On the contrary, it is my acknowledgment and understanding as to how brutal waiting is on every facet of our lives, because, believe me, I get it.

From the person anxiously watching the clock wondering if their parking will run out before they are seen to the person wondering if their co-workers and boss will understand that they are late; from the person juggling three active children in an overfilled waiting room to the person wondering if they will have time to make dinner when they get home before soccer, ballet and piano lessons; from the person wondering if this test will finally determine what is wrong with them to the person wondering if they are going to catch anything from the clearly sick people around them.

These are all legitimate factors when we have to wait. But, from my perspective, dealing with long wait times is only part of the solution. What happens while we are waiting is just as important.

Case in point: One of the waiting rooms I was in recently had a screen that not only posted a patient’s first name and the number of minutes until they would be seen, but was updated so if there was a change, a patient would be informed immediately.

What a simple solution to the “how much longer?” situation that not only addresses patients’ queries and concerns, but it has to affect the bottom line in terms of reducing the time of staff answering this question!

Let’s be honest, we all check before we resign ourselves to participating in the line that goes on for who knows how long. It’s one of the reasons why Appletree’s online app showing available doctors, locations, and wait times is so successful.

It’s also one of the reasons why booking online for our appointments makes sense: we don’t have to wait for staff to be available to take our call. Conversely, that same staff member’s time is reserved for some other task.

So where am I going with all this talk about waiting? I’ll sum it up with three points.

First, we need a discussion about necessary versus unnecessary waiting; between what we can and will accept versus what is bordering on immoral or inhuman.

Second, it makes sense that all stakeholders be involved in figuring out how to deal with waiting. This includes objective and critical evaluation as to the success of any program or process put into place.

Which brings me to my third point: I think I speak for many people when I say I don’t mind waiting for something if at the end it is worth the wait. Taking a look at my journey of being diagnosed I have to say I have mixed feelings. Knowing what was wrong with me gave me intense relief, especially when I had to work hard at getting taken seriously all those months. However, I don’t believe I was ever really heard.

If I had to give a single piece of advice based on my experience it would be this: listen. I mean, really, listen to the patient and don’t assume you heard unless the patient tells you that you got it right. I didn’t care what was wrong with me so much as I wanted and needed the pain to stop. Not only would the wait have been far less of an ordeal had I been heard, I likely would have been able to hear what was being said to me. I don’t believe I was being obstinate … I simply couldn’t hear past the pain.

Here’s the thing: fixing wait times is a good thing and we should do it, but it’s too big for one person to solve … but hearing what a patient needs at that very moment is doable. In doing so, we change the conversation to be about the waiting experience instead of wait times.

It would have made the wait worthwhile to me.