Dear Doctors: Stay Focused on your Goal

I recently shared here the story of his recent eye exam. To briefly recap, this office (which has in his files a fairly extensive list of his diagnoses) has a nurse-type person come in to do the initial exam, then the doctor comes in after. The not-doctor person asked T to identify the letters, and he could not. It became unclear whether he couldn’t see them or whether he couldn’t name them – so I asked her if we could switch to shapes. She refused because “he did letters last year.”

And yes, he did do letters last year. But he’s been struggling with it this fall. Can he not remember? Can he not get his brain to make his mouth say the thing? Is he just worried that he’ll say the wrong thing and that makes it impossible to say anything? I don’t know. His brain is a total mystery some days. But, regardless, the provider digging in her heels and insisting that he could do it when he obviously wasn’t going to be able to wasn’t helping at all.

She huffed off with “I’ll let the doctor deal with it.” The doctor came in, tried twice, then I asked him if he could see the letter but couldn’t tell us its name and he nodded, and she said “oh! ok. Here!” and handed him a sheet of paper with the letters on it so he could point to the letter instead of saying it.

Perfect.

So easy.

What was the difference? The eye doctor was focused on her goal – determining T’s ability to see. The nurse person was focused on following her routine (and possibly NOT “giving in” to “stubborn kids”).

Things go better when you stay focused on your goal.

The goal of this appointment was to figure out what he can and cannot see, not to test his knowledge of the alphabet. What’s the best and easiest way to achieve that goal? Is it to insist he identify letters? Or is it to use any of the easy workarounds you have?

Even if you believe with all your heart that he CAN identify letters, does making letter identification into the central issue of the appointment actually achieve your goal of determining his visual acuity?

I’m going to tell you another story now. This one’s about speech therapy. T worked with a handful of speech therapists over the years and we weren’t ever really happy with any of them, but I couldn’t put my finger on exactly why. Then we met his current speech therapist and I understood. This speech therapist knows what her goal is and works to achieve that goal, without ALSO making him work on other hard things.

His previous speech therapist was trying to have him do things like touch a dot for each syllable – except 1:1 correspondence is ALSO hard for him, so this was like “work on this hard thing while also doing another hard thing” and we never got any results from it. (Imagine trying to learn to play the flute while ALSO having to stand on one foot on a balance beam.) Another one had him pairing gross motor with some of his exercises – and T’s a kid who has motor planning issues, so PLANNED gross motor movement requires his entire brain. That doesn’t leave much room for the speech therapy goal to be achieved.

The current speech therapist just moves on right away when something she wanted to try is just too hard – not because she doesn’t believe he can do the thing, but because she recognizes that spending her time working on motor skills (or whatever) does NOT achieve her goals of working on the speech skills. He made so much more progress with her in 12 sessions than he did in several years with other therapists.

Stay focused on your goal and minimize unnecessary obstacles.

Dear Doctors, I’m Good But I’m Not That Good

Dear Doctors,

Today, let’s talk about transparency and expectations, specifically regarding Preparation For A Clinic (or other) Appointment.

I know you have a set of metrics or other information you’d like from me at our appointments. “How is x going” or “how many times does he y a day” or “exactly how much z does he get?” Some of these things are pretty predictable, some of them you seem to invent during the appointment.

And I’m sure you think I track all of this stuff. I mean, I do a great job tracking the things you specifically ask me to track, so why wouldn’t I be conversant with other tiny numerical details of his life? I should know this stuff simply because I live with him and obviously I’m paying attention, right?

But here’s the thing. I can pay attention to anything you want. And I can write it down, I can make charts, I can be so thoughtfully focused on that thing. But I can’t be doing that for all of the things, at all times. Remember, you are not our only provider. You are not the only one wanting us to be observing things, tracking things. And after 8 years of remembering medical details and getting hardly any sleep, my ability to remember details is really waning. (And, let’s be honest, my ability to remember details like numbers has never been strong.)

So while I can tell from his labs that the amount of water he’s getting a day is pretty OK, and I could absolutely bring you an exact number of how much water he’s getting if you asked in advance, I can’t necessarily pull an accurate estimate out of thin air when you unexpectedly ask me for this detail. Sitting here writing this post, I can’t even remember how much water he gets overnight – I’d have to check the pump settings.

Also, I could absolutely tell you something like whether it seems like he’s holding his head up more than he used to… but unless you warn me in advance that you’re going to want to know that, I won’t likely have been paying enough specific attention to that detail to be able to accurately answer with more than a vague feeling.

You’re surprised when you ask me about things like poop and I stumble to answer. I mean, yes, I guess I see his poop every day, but… I mean, come on, guys. I can’t even remember why I walked into a room half the time, you’re really expecting me to remember the details of his poop going back to a month ago? Nope. I can give you vague feelings about his poop, but I can’t give you details unless you asked. A month ago. Then I would have jotted it down every day.

And that’s the key. I know you’re busy but hey – so am I. Our upcoming appointment is NOT a surprise to you. You were likely there when we scheduled it. And at that time, you likely knew what sort of information you would want to discuss. That’s the time to tell me what you’ll want to know when we see you next. “Why don’t we check back in four months? At that time, I’ll want to know details about his poop, like consistency (use the chart), frequency, and whether you notice a difference with the medication.)”

That isn’t HARD. 95% of the time when you schedule a followup, you know EXACTLY what you’re going to want to know at that followup appointment – why not let me in on the secret, and then I can be prepared?

Dear People: Yes, You Can Get A New Doctor

This is our follow-up post to Dear People: Signs You Need a New Doctor.

Dear People,

YES! You CAN get a new doctor.

What’s your first, gut response to hearing that maybe it’s time for a different doctor? Are you protesting in your mind? Even just a little? Probably.

It’s important to listen to that protest and consider it, but if you read through our last blog post and thought “oh wow, my doctor makes stuff up all the time and never listens to me – maybe I DO need a new doctor,” let’s try to overcome some of those protests.

But there aren’t any other doctors

Yes, there are.*

Do you mean “there aren’t any other doctors in my city/area”? You can drive. Be realistic with how often you need to see this doctor in person, take into account any travel allowances offered by insurance/charities/others, and don’t be afraid to seek out doctors further away. We see some specialists that are a 10 hour drive away, and I know lots of families whose children see doctors they have to fly to. Is it easy? No. Is it worth it? Well, if you strongly want to try Treatment Protocol A and your local doctor will only do Treatment Protocol B, then yeah, it’s probably worth it. If your local doctor hasn’t ever treated someone with X before, and you have X, it’s probably worth it. If your local doctor keeps shrugging and nothing they’ve tried or suggested has helped, then it’s probably worth it.

(Yes, I know this can get expensive, and I know it’s unrealistic for some families. But do seek out what resources are available to you to help with this. Insurance, disease-specific charities, charities that help with travel expenses, Ronald McDonald Houses, etc.)

*There are some cases where there really isn’t another doctor. But if you’re already seeing the nation’s or world’s top expert in your issue, chances are good you don’t need to see another doctor.

But I need to stay with our local doctors because we’ll see them in the ER

Yes, you might see the old doctors in the ER. Though, depending on why you’re switching doctors, you might want to avoid the ER they’re associated with if at all possible. Be honest with your child’s new doctor. We switched to you from our old provider because x, y, and z. If we need to go to the emergency room, what should we do?

Most of our (not local hospital) doctors prefer that we give them a heads-up before heading in unless it’s a true life or death situation, and they’ll advise us on next steps, including advice on what to not let the local doctors do. (With his kidney transplant, we have to be careful with meds, and the local guys aren’t always on top of it. I usually get advice like “they might want to do x, that’s not ok. Definitely have them call first” or “just have them call once things have settled down, we’re ok with however they want to treat this.”

We’ve literally never had local doctors other than the pediatrician, but our ER has always just called the relevant specialists at our primary (2 hours away) hospital and done whatever they’re instructed. I guess they don’t have to, but I wouldn’t go to an ER that wouldn’t call my child’s current specialists. (And yes, if I lived in a town with only one emergency room, and that emergency room wouldn’t follow the recommendations of my child’s specialists in another town, I’d move. Easier said than done, I know, but this is my kid’s life we’re talking about.)

It’s too much work

Yes, it is a lot of work. Frankly, this is what kept me in a dissatisfying relationship with my primary care doctor for years. I felt increasingly crappy during those years, my ferritin fell lower and lower, and yet my complaints fell on deaf ears. You’re getting older. You have three kids. You are busy. Blah Blah. I never felt listened to.

I finally sought out a new provider last year, and I wish I hadn’t waited so long. Don’t be me. Don’t wait so long!

It’s Too Awkward!

Yeah. It’s awkward. Most of the time, you can switch doctors and never see the old one again, and that’s that. Some of the time, you’ll still run into your old doctor. Or, in our case, sometimes we have a more gradual switchover, where we see another doctor for a second opinion, but still have his care actually provided by the old doctor. We had this recently, where we felt like our local doctor was just out of her depth with a situation we have going on, so we saw a specialist at a much bigger hospital. That specialist has been a little frustrating, but wanted to do tests and have us see another doctor at their hospital, and so actually getting the second opinion has taken a while. In the meantime, we had another appointment with our local doctor, who we hadn’t really planned to tell we were seeing someone else. But she knew. And that was a really awkward conversation. But we got through it, and ultimately, I needed to just turn off the part of myself that is really socially awkward, and turn up the part that says “my kid deserves the best care possible and I deserve to find out if another doctor can provide that.”

Don’t let the fear of awkwardness hurt you or your kid.

Are any of these (or other) reasons worth risking harm?

That’s really what it comes down to. “Is this a good enough reason to risk harm to my or my kid’s health?”

I’m not advocating abandoning your doctors. I’m advocating abandoning doctors who aren’t meeting your needs, especially if you have chronic or serious health conditions.

You deserve a doctor who listens, who considers your opinions, who educates you, who engages in conversation, who doesn’t lie, who doesn’t bully, and who treats you as a valuable part of the team. If you do not have that, then you deserve a new doctor!

Dear People: Signs You Need a New Doctor

Dear People,

We need to talk. We need to talk about your doctors.

We need to talk about getting those doctors off a pedestal, realizing there are other doctors in the sea, and seeking second opinions and better doctors. We need to talk about respect, and facts, and truth, and, yes, jerkfaces.

Let’s call this Part I: Signs You Need A New Doctor.
Our next installment will be Yes, You Can Get A New Doctor.

Signs You Need A New Doctor.

Your Doctor is Condescending, Rude, or Inattentive

This goes without saying, right? I don’t need to elaborate. But yet I know SO MANY PEOPLE who stick with rude, condescending doctors who don’t listen at all. If you walk out of a doctor’s appointment and can honestly say that you would NEVER stand for being treated that way by a store clerk, your spouse, or your child’s teacher, why on earth are you ok with it just because this is a doctor?

Your Doctor Isn’t Capable of Considering Your Opinion or Ideas

Does your doctor brush aside your thoughts or opinions? Ignore your ideas?

“Hey, doctor, I found this interesting research study that suggests that switching to ferric citrate from ferrous sulfate results in much fewer side effects and greatly enhanced absorption. Also, the National Kidney Foundation’s CE class on managing anemia in renal patients had several portions that were highly favorable of this medication switch. What do you think?”  “Hm, I think we’ll just stick with the ferrous sulfate for now. Moving on…”

OK, no.

Yes, as a responsible patient, you should push for further conversation. (See our handy list of questions to help you self-advocate.) If the doctor provides it, that’s great. But you shouldn’t have to push for further conversation every single time. Get a new doctor if this one doesn’t learn that you deserve consideration.

If your doctor doesn’t consider your opinions or ideas even when pushed, though, get a new doctor right now.

Your Doctor Isn’t Capable of Reasonable Conversation

Your doctor recommends something or makes a diagnosis and you’re uncertain. “You know, I was reading up on that diagnosis, but it doesn’t seem to fit. Symptoms include x, y, and z that I don’t have, but don’t include a, b, and c that I do have. Why do you think this is the right diagnosis?”

A doctor worth your time will have that conversation. They’ll answer your questions, they won’t be offended or defensive. They’ll be able to reasonably discuss their thought process.

A doctor who needs to be replaced will get irritated or defensive. Or they’ll pull some variation on “oh, where did you get your medical degree?” Or they’ll disparage the idea of patients self-educating. They won’t be willing to have a reasonable conversation in which they explain themselves and their thought process to you.

If your doctor doesn’t respect you, you need to get a new doctor.

Your Doctor Does Not or Cannot Back Up Their Position With Facts and Research

Let’s pause on this one. Sometimes there just isn’t research. But if that’s the case, a doctor should be able to explain that, and tell you where their recommendations or opinions come from. Often in our own case, Teddy’s doctors can’t pull out a study that says, “kids with this, this, and that have been successfully treated by this other thing,” because there’s literally not one. We have to go by “well, I called a bunch of other doctors and they suggested we try this” or “I don’t know, but logically, this seems like it would be a good option to try.”

But often there IS research. And if a doctor states something as fact, they should be able to back that up. “You said that our options are x and y, but you prefer option x because it’s less risky. How are you quantifying that risk?” “You said that my child needs x, but when I looked at CDC recommendations, they state instead that we should do y. What is the basis for your recommendation?” If they can’t or if they won’t back up their statements, you need a new doctor.

I have most often seen this with women seeking a VBAC (vaginal birth after cesearean). The anti VBAC OB for some reason starts making things up to convince the woman that she can’t have a VBAC, or sometimes they state things like “your chances of x happening are DOUBLE!” which is technically true, but the risk goes from like .03 to .06. Yeah, that’s double, but it’s still REALLY unlikely.

Your doctor threatens to call CPS.

If you have a provider who threatens to call CPS (Child Protective Services) on you and – this is important – you’re not actually putting your child in danger, you need a new doctor. This should go without saying, but first make every effort – including getting a second opinion, and not just from the internet – to make sure that you’re NOT endangering your child. And then get a new doctor.

Let’s back up a bit. You need to be nice. If your doctor suggests a course of treatment with which you disagree, you need to be nice and attempt a conversation. Why do you disagree with that treatment, what alternatives are there that you’d like, why does the doctor recommend this course over the alternatives? It should be a conversation, not an argument, at least on your end, at least to start. If you’re being nice, considering the doctor’s position, attempting a conversation, and are STILL threatened with CPS? You need a new doctor.

(An example that I hear most often with this. Child gets feeding tube. Doctor says child needs formula. Child doesn’t have a medical diagnosis precluding food. Parent says, “thanks but I think we’ll do a blended whole foods diet.” Parent doesn’t back down from this VERY REASONABLE position and doctor can’t back up his position with facts or studies. Doctor falls back on misconceptions like “you’ll introduce bacteria!!” and when that doesn’t work, they use that as a justification to call CPS. They’ve made up a “danger” and then use that as the basis for CPS involvement.)

And the problem here isn’t really that any doctor who would contact CPS with concerns automatically needs to be thrown out. The problem here is with doctors who use CPS as a way to manipulate and bully their patients. You don’t need to be treated so disrespectfully. Make sure you’re in the right, then get yourself a new doctor.

You’ve exceeded your doctor’s expertise

This is another that should go without saying, but yet it does need to be said. Have you just exceeded your current doctor’s expertise? Many doctors in smaller hospitals (even smaller University hospitals – I’m looking at you, UIowa) just haven’t seen a lot of the rarer issues. We’re happy with most of Teddy’s Iowa City doctors, but several of them have only ever seen one kid with one or another of Teddy’s diagnoses – HIM. This is why we’ve sought second opinions or even transferred care for some specialties to larger hospitals. They’ve just simply seen more kids, and seen more kids with his things. It’s not anything against the local guys – but when you work at a smaller hospital, you see fewer rare things – that’s just statistics. If your doctor hasn’t ever seen someone with your issues, go somewhere else if you can, even if you don’t intend to transfer care.

How do you know? Ask. “How many other patients have you treated with this diagnosis? And what is your success rate with those patients?” If it’s less than a handful… really, truly, honestly do yourself a favor and at least seek a second opinion from someone who’s seen a LOT of that diagnosis. Someone who’s conversant with the issues without first hitting up a reference book.

Another way you know? Other patients with similar diagnosis (or parents whose kids have similar diagnoses) will tell you, especially if you ask. Find a group for the diagnosis. Ask. If your doctor or hospital doesn’t have a great reputation for your diagnosis, you’ll find out.

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(stay tuned for the next exciting installment in our series – Yes, You Can Get A New Doctor. We’ll be overcoming most of your excuses for sticking with a bad doctor.)

How did you know it was time to replace your doctor? I’ll give some examples from our own lives, and you can leave yours in the comments.

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Personal examples:

A GI doctor who needed to replace Teddy’s Gtube button, and said Teddy uses a Mini One (brand) button. I said, nope, he uses a Mic-Key, always has. The man looked me straight in the face and said no, Teddy is using a Mini. I pointed out that the button he had and the button the doctor brought in look nothing alike, and I offered to Google what Mic-key buttons look like for his reference. He INSISTED he was right. He was wrong. I let that one go, but in his clinic notes, he put that Teddy doesn’t even use the G-tube for food any more. This topic literally never came up during our appointment. And it resulted in about 6 months of hard work on my end when the insurance company got ahold of the clinic notes and decided to stop paying for his tube feeding supplies (which he was using for 100% of his caloric intake).  Yeah, we fired them.

A GI doctor who never had answers for ongoing problems, but wanted to see us every 3 months anyway. Every three months so they could shrug and suggest we try decreasing fiber, or increasing fiber. Fired.

A specialist who first refused to contact Teddy’s nephrologist and cardiologist to make sure their recommended course of treatment was safe for his kidney and heart, and then finally relented and said he would contact them. At the next appointment, he said that they’d never called back. This made me concerned, so I contacted them myself. They reported that they’d never heard from this doctor. Fired.

A specialist who consistently didn’t answer my questions, even when I pressed. Fired.

The Dear Doctors series

Evidently, I need to put out a disclaimer similar to the one everyone seems to have to use these days to avoid people’s feelings being hurt by people saying things obviously not directed at them. Clearly, doctors/therapists/care providers (herein called “doctors”) are USUALLY good people doing the best they can. Usually. And just like with any other profession, some doctors do a GREAT job treating patient A but not so great with patient B. And some doctors just aren’t a good fit with some patients. Doesn’t make them bad people.

My Dear Doctors series is not meant to disparage doctors. I’m actually just hoping to bring awareness to those in the medical profession of how things are from the patient side. It’s a perspective they don’t get often enough.

One of our former (because she moved) doctors once told me with some level of surprise that she’d had to take her child to the ER in the recent past and she’d never really realized how stressful that was, she couldn’t imagine being there as often as we were at that point. And she knew going in that her child was not in danger of dying and likely didn’t have anything particularly unusual going on. Like, they didn’t skip the triage room and have the nurse literally RUN them back to a room while paging doctors and respiratory therapists.

The patient side is one they don’t get often enough. That’s the point of this series. “Hey, guys, here’s what this looks like from our side.” Not “hey, guys, you suck.”

Dear Doctors, There’s Only One Of Me

Dear Doctors,

You might not have noticed this, so I’ll point it out to you. I am only one person. There’s only one of me. There’s me, and that’s it. There’s also my husband, but he’s also just one person. We also have other children. You’ve met them. If you look through Teddy’s charts, you’ll even find comments from some provider noting that I couldn’t provide adequate support to Teddy (who had child life attending to his needs) because I was too busy breastfeeding his sister.

It’s because there’s only one me.

So when you recommend we try adding a new (weekly) therapy, or when you tell us that we really should join a homeschool co-op, or when you recommend getting Teddy involved in sports (honestly, it’s like you’ve never even met the kid with this one), or you wonder out loud why we’re not doing intense dyslexia tutoring (3-4 times a week)… I mean, do you also want to be part of deciding what we drop so we can add the new thing? Because welcome to the There’s Only One Of Me reality. There’s only one of me.

When do you imagine all these things take place? Like, do you imagine that if we add an optional activity, the day actually just expands by that amount of time? Because it doesn’t!

In the average week, right now, we have 10-12 hours of appointments, including driving and waiting time. If it’s an infusion week, that’s another 6 hours or so. You seem to be obsessed with his educational progress, so I assume you want him to actually, you know, do school and whatnot, so that takes time, plus he does absolutely no learning after 1:30 pm, so that factors in there. I also have to do those inconsequential things like make food for everyone and take care of our home.

I mean, when, exactly, do you imagine we’ll do the new thing you’re suggesting?

But I know you don’t think about that. I know that, even though you’ll deny it, you sort of see the rest of the family as serving the interests of your patient. And I also know that the primary issue here is that you never ever stop to think about the bigger picture. “This thing I’m recommending is good,” you think. “Therefore, you should do it.”  But you never stop to think, “What other things have I recommended? How does this fit in with the other things?” You never wonder, “Hm, if I have to prioritize this new thing among the other things, which is more important?”

And you literally never stop and ask yourself, “Gosh, what other things does this family have going on?” You’re treating your patient, and that’s where your focus should be, yes. But your patient lives in a family. And that family lives here in the real world. One without unlimited resources of time, money, and energy.

Please, go ahead and recommend stuff. After you do, consider involving your patient’s family in a discussion about how high of a priority the new recommendation is compared to all the other things you’ve recommended they do. Be sure to keep any hint of judgement out of this discussion – parents tend to be pretty sensitive to the judgements coming from or perceived to be coming from their child’s providers – if you want your patient’s parents to be honest with you. Acknowledge that there isn’t time for everything, and help them prioritize. What can be done now, what can wait? What would be ideal but isn’t necessary vs what is truly needed?

This is really where you can be the most help in the life of your patient – by acknowledging that they and their family live here in the real world, acknowledging that they cannot possibly do everything, and helping them prioritize all the things that would be beneficial. This is far better than simply putting out recommendations and letting your patient’s family walk out of your office feeling unnecessary guilt because they don’t live in a fantasy world with unlimited time, money, and energy!

 

Dear Parents and Patients,

Assuming you have run into this same issue, what can you do about it?

Kindly point out to your doctor that you’re only one person. “That new therapy sounds amazing. I’m not sure when we’d be able to fit it in, though. Do you think it’s more important than x thing?” “That sounds great. Do you have thoughts on how we might be able to get help paying for it?”

Or even just “Can you help us prioritize all the things you’ve recommended we do recently? I’m at maximum time/stress/money/whatever right now, and adding something MORE doesn’t seem realistic. Where does this new thing fit in?”

Don’t walk out of your doctor’s office mad that they keep piling things on – they’re supposed to be part of the team. Ask them for help with making their recommendations happen!

Dear Doctors: Let’s All Have The Same Standards

Dear Doctors,

Let’s talk about having some equality of expectations.

See, I am of the belief that your M.D. doesn’t automatically make you more important than me as a human. It doesn’t make your time more valuable. It doesn’t make you more worthy of respect. Your M.D. means that you have knowledge in a specific area of expertise. That’s really it. Well, and you can access all the good medical journals for free with your institution’s log-in.

I also am of the mindset that I have hired you to provide a service that I cannot provide myself. Much like the plumber (who also has knowledge in a specific area of expertise) who I hire when the plumbing jobs in our house get too complex for my self-taught skills. I have hired you to advise me on the care of my child’s medical or mental condition(s). We’ll talk about this more in-depth in a future letter, but for now, let’s just agree that I pay you to provide a service.

Now that we’ve established that, let’s get to the heart of it.

I think it’s only fair that we have more or less equal expectations of one another.

For example, when you ask me to show up 10-20 minutes in advance of our appointment time, then you show up 20-30 minutes AFTER our appointment time, that’s not us being equal. Of course, everyone understands when it’s an emergency, but too often, I’ve heard friends say that they’ve seen the doctor they’ve been waiting for breezing into the office 20 minutes after their appointment time, with their coffee and their coat on, having JUST arrived, and we’ve experienced this a time or two ourselves. Unless you stopped to administer CPR on the side of the highway on your way in, that’s just you saying that you think you’re more important and that your patients aren’t worth showing up for.

And I understand why you want us there early. You want us there, waiting in the waiting room, so that YOUR schedule runs smoothly. And I can go with that. I’m not complaining about that (nor do I adhere to it when you’re always late).

I get particularly annoyed at this when you have policies that include your office staff calling, texting, or emailing – or all three – more than once to “confirm” that I’ll arrive on time for our appointment. And then when I arrive on time for our appointment… you’re not there.

If you expect me to arrive on time, I expect you to arrive on time.

Emergencies happen, of course. To everyone. You may experience emergencies as part of your job or as part of your personal life, just as I may experience emergencies as part of my job or my personal life. As another example, there’s the time I drove over to the hospital after a heavy sleet. People died on the highway that morning. I passed a multiple car pileup. I watched the car in front of me skid off the road, nearly clipping me as he sailed past. I white-knuckled it at 20 mph on the interstate for an hour. (Are you wondering why I did it? It didn’t seem that bad when I left the house and by the time it became apparent that it was really bad, I was already far enough into it that turning around wouldn’t have done me any good – plus traffic on my route home was at a standstill due to the aforementioned pileup.) Even the extra hour I’d given myself to get there wasn’t enough. When I explained this at check-in – we were ten minutes late – I was told I’d have to wait while they called back to see if you’d still agree to see me. You did, but it was a little infuriating to be treated as though I’d just slept in, when I’d nearly killed myself to make it at all.

I’ve been asked to wait for a half hour or more – a few times, remarkably more – because there was an emergency that couldn’t be helped. Each time, I’ve been really understanding. Emergencies do happen. But they don’t just happen to you.

If you expect me to be understanding about emergencies when they come up for you, I expect you to be understanding about emergencies when they come up for me.

Similarly, I believe we should have similar expectations about missing appointments. Obviously, everyone should be courteous enough to notify others as far in advance as possible if an appointment will be missed, and obviously everyone also needs to understand that sometimes advance notice isn’t possible. But many of you have very lopsided absence policies. If you need to reschedule an appointment – for example, because you needed to see the dentist for a routine exam, as one of our providers did – I do understand, to a certain extent. (I mean, hey, I schedule our routine appointments as far in advance as I can so that I know to schedule around them, but not everyone is that…way.) But when you turn around and tell me that my three absences this quarter (for an acute illness, a hospitalization, and an urgent specialist appointment) is too many, right after you’ve rescheduled or cancelled two of our appointments yourself, well, I’m a lot less understanding.

If I am expected not to miss or ask to reschedule appointments, I expect you not to miss or reschedule appointments, either.

(In fact, I would go so far as to suggest that you have even LESS reason to miss or reschedule appointments. You control your own schedule. As patients, our schedules are often completely out of our control. We can’t say to the subspecialist, “well, Tuesday morning doesn’t work for me because we have speech therapy that day.” If Tuesday morning is when the subspecialist has clinic, then that’s when we have to see him.)

I also think it only fair that we operate under similar timelines. I’m happy to take my cues from you – you’re the subject-matter expert here, after all. Recently, I called you with a nonurgent but important question about my child’s care. It took about a week for you to return my call, which was absolutely fine. I was unable to answer your call, so you sent an email with an answer, some more questions, and a few pretty big things for me to think about, which was great. I got the email at the end of the day, at the tail end of a long, big, mind-full-of-things week of big appointments at a different hospital, and I decided it could wait the weekend. I figured you must not be feeling urgent about it, since you’d taken so long to get back to me with my original question. Then you called the next morning, early, to see if I could give you my thoughts on your (nonurgent) questions.

If you need time to consider my (nonurgent) questions, I expect you to give me time to answer your (nonurgent) questions.

Last, shouldn’t we have similar paperwork expectations? I can’t count the number of times I’ve filled out intake forms – which is no small feat these days – with lots of good, detailed information. I look things up. I get out my notes. I do a STELLAR job on those forms. Then you breeze in the room and ask me the questions verbally. Bro, why did I invest the time and mental energy in filling out those forms if you’re not even going to glance at them? (While we’re at it, why don’t you have me mail them in before our appointment so you can be conversant on their contents?) My most memorable experience with this was the time I handed you my papers, complete with addendums, then you asked me things like “what age was he when he said his first word?” When I answered with “whatever it says on the form,” you responded that you wanted to hear it from me. Who exactly did you think filled out the form? And, frankly, you exactly do you think I am? Someone who can remember things like what age my kid was when he said his first word? They make baby books for a reason, and I don’t carry that around with me.

If you ask me to fill out paperwork for you, I expect you to read it. Before we see you, if at all possible.

I don’t think these expectations are at all unreasonable. They are, in fact, equal. They’re asking you to adhere to the same standards to which you ask me to adhere.

After all, we really should to be able to have similar expectations of each other, shouldn’t we?

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I’m trying to end these Dear Doctors posts with helpful or encouraging advice, but I’m not sure what to say on this one. It would be nice to be able to say that you should keep searching for a doctor who addresses at least some of these issues in their practice, but here in the real world, many of us just don’t have that many choices.

If you feel you can, addressing any major issues politely with your provider is a good step. “I don’t know if you realize this, but you’ve indicated that you’re concerned about Johnny’s school performance, but then today, he missed an extra hour of school while we sat in the waiting room. I understand sometimes this is unavoidable, but it’s happened during our last 3 appointments. Do you have any ideas for how we can minimize our waiting room time?”

For the paperwork issue, I have generally just politely directed doctors to the paperwork or to his chart. I’ll answer a few questions, but more than a handful, and I just start telling them it should be in his chart, or I say “I think that question was on that packet I filled out – do you have it?” Or I’ve said things like “I’m pretty sure that’s in his chart – I can look it up using the app if you like,” which usually embarrasses them into looking it up themselves. For the provider I mentioned above who said he wanted to hear it from me, I asked if he could hand me the forms back so I could look at what I wrote, since I’d filled it out when I had all my written records available to me at home, and whatever I put would be more accurate than trying to just go by my memory.

*note: “doctors” here is meant to include all care providers – doctors, nutritionists, therapists, nurses, etc. My examples here are all real, but did not happen all with the same provider. If they’d all happened with the same provider, they’d be my former provider. Many of the providers from these examples are, in fact, former providers anyway.

Dear Doctors, About Self Care

Dear Doctors,

Do me a favor. Either really believe in caregiver self-care, or just stop talking about it.

And by “really believe in” it, I mean “actually help it happen.”

I feel like it’s important to note at this juncture that you might THINK that you’re helping. You might feel like a friendly reminder “don’t forget to take care of yourself!” is helping. You might feel like “use some of that respite time for a date night!” is helping. But these things aren’t helping. These things are nagging. Or, alternatively, these things are about as useful as saying “hey, why don’t you move to Mars?”

Oftentimes, the end result of these types of comments is the parent/caregiver just feels even crappier, because they KNOW they should be taking better care of themselves, and you’ve just reminded them that YOU KNOW they’re failing at this. And parents don’t like to think their child’s doctors see them as a failure at anything.

So either help, or just shut up.

How can you actually help? Well, for starters, if you know you don’t plan to actually offer practical help, then don’t bring it up. Do you plan to find me a trustworthy babysitter or respite person who is comfortable with Gtube feeds and medications and severe ADHD and developmental delays? And the money to pay for both them as well as the evening out? No? Then why bring it up? When you bring it up, it makes me feel like I have to justify myself to you. “Oh, well, it isn’t really that easy…” and then it turns into a conversation of me trying to convince you that it’s actually not that easy. But the thing is, this is really actually NONE of your business. I actually shouldn’t HAVE TO try to talk you into understanding that the real life, on the ground experiences of your patients are different from your own personal experiences.

Secondly, if you really have a commitment to caregiver self-care, take a minute to assess all the things you’re asking your patients’ caregivers to do. And then think through the things that all the child’s other doctors are asking them to do. And then look at that list. Really look at it. And then consider if, in exchange for a bit of sanity, or some time to eat lunch every day, you could let something go. Nothing you can let go? How can you get community supports in place to help?

Thirdly, listen to the parents of your patients. If they’ve made a well thought out decision to drop something from their radar, LISTEN TO THEM. Why did they decide to let that thing go? Are they overlooking important information that they need to know to make a better decision? Are there compromises to be reached here? Is there something ELSE you could back down on so the parent feels able to bring increased focus to the area they had previously dropped? If the thing the parent has dropped feels vitally important to you, the doctor, then it’s time for a conversation, but the conversation needs to be more than just “this is important, so do it.” You need to look at the child and parents as whole people.

Your patients’ parents are more than just unskilled labor existing solely to support your patient.

Dear Doctors,

I’m considering making a series of Dear Doctors posts. Dear Doctors, Here’s Some Things You Might Not Realize From A Patient Perspective.

Here’s installment #1.

Dear Doctors,

Why is everything so very very hard? I truly don’t understand it. When I call and say, “Our insurance won’t reimburse very well for the prescription at this particular concentration, but if you change the concentration to this other option, they’ll reimburse it fine. Can you please write a new prescription for this other concentration?” this should be a simple transaction. Nurse gets message, relays need to doctor. Doctor says, “sure, that seems simple enough.” Doctor writes new rx, nurse returns call and says, “ok, it’s ready to pick up any time today before 4,” and then there actually is someone available at the clinic until 4 to enable pickup. That is SO EASY. It’s not hard. It isn’t. Until YOU make it hard.

Until your nurse calls and argues that there’s no reason not to fill it as written. Until your nurse calls and doesn’t care about reimbursement rates. Until your nurse calls the pharmacy and countermands my instructions to the pharmacy. Until your nurse refuses to ask you to please just do this because it’ll take 5 minutes. Until it takes three more phone calls. Until there isn’t anyone at the clinic to hand me the prescription when I show up during the time I was told because they’re all at lunch.

Then it’s hard.

And that doesn’t seem like a big deal, right? So it was a few phone calls and an inconvenience in having to wait around at the clinic. NBD, right? Except those were only a handful of healthcare-related phone calls I had to make that day. Except that day wasn’t the day I had respite, and just leaving my house to pick up a prescription is a lot harder than it is for you with your regular kids. Except I had only slept about 3 hours the night before, and the night before that, and the night before that going back 6 years. Except while I was on the phone, my child – your patient – was opening the front door again and running down the sidewalk because I wasn’t paying attention. Except I had to use the time I was hoping to actually eat some lunch to drive over and pick up the prescription. I skipped lunch that day, again. Except I had just spent the last hour managing medications and getting food started for my kiddo, and had been looking forward to actually getting something accomplished when I got the call from the pharmacy explaining that your nurse had told them she wouldn’t ask you to change the prescription. Except, except, except.

Except our life is HARD. Life is so hard, every day. We are still really just surviving. And have been for six years. And I don’t have the kind of stamina I used to. And when YOUR office makes things so much harder than they need to be… it’s just HARD. I need a new word.

It didn’t need to be so hard. You let it be hard. You made it hard. You could have made it easy, but you CHOSE hard. I don’t know why you would treat patients – your customers – like that.

I would challenge care providers – especially those who care for children with a lot going on – to ask their patients if their office is doing anything that makes life harder than it needs to.

Some of those things won’t be able to be changed. Our pediatrician’s office lets you come in for vaccine only visits only at a certain time every day – a time that’s horribly inconvenient and hard for us. But that’s what works best for their work flow and I totally get that. But some of the things you can change. LISTEN to your patients. Consider their feedback. I’m not talking about the post-visit satisfaction surveys. I’m talking about calling parents a few days before their visit and telling them you want to discuss this, or emailing them a few days after their visit. Honestly seek their feedback. Make sure they feel safe to tell you. And LISTEN. Ask if they have suggestions for improvement. Talk about their ideas to your staff. See where you can make improvements for your families – tiny things can make such a huge difference in the lives of medical families.