It's Not Just a Meal

You call into a brand newly opened, highly recommended restaurant to get a reservation. The person on the other end of the line is rude. She abruptly tells you you’re giving her the information wrong. She’s flippant and bothered to be talking with you. But because you’ve heard it’s a great chef with amazing food, you forage ahead and make the reservation. Afterall, maybe she was just having an “off” day.

You show up to the restaurant and the hostess is aloof, cold and unwelcoming.  Once you finally get a seat, the waitstaff is almost angry that you’re there. They seem “put out” to even serve you.

By the time the food comes out, do you even CARE anymore how it tastes? 

Do you think the chef has ANY idea how the front of the house is giving HIM a bad reputation?

And what can be done about it? You could complain, give a poor tip, put a bad review on Yelp, not go again, tell your friends not to bother.

Bottom line: We would not put up with it. And we would likely take our business elsewhere.

But what if this same scenario was about healthcare? This scenario wasn’t made up. I just changed the terms to reflect restaurant and not doctor.

In business: “The customer is always right”.  (Which I don't believe is true.)
In healthcare: “The patient is always wrong”. (Or so it seems.)

As a mother to 6 children with various special needs (one very complex) and a health concern or two of my own, this is a scenario with which I am all too familiar. I’m a semi-intelligent person who is proactive and engaged in the healthcare system. I even work for a healthcare organization.  (Shout out to AVA – the Association for Vascular Access. If ever you get an IV, don’t let them stick you more than 2 times before getting a more qualified specialist and consider vein visualization technology. It exists. Veins are important and you’re not a pin cushion. But I digress.)

I often wonder how the average person navigates through the healthcare system. It’s exhausting!

Last week I was to schedule with a new doctor. I called my primary care physician (PCP) to get a referral. They said I was calling too soon and to call back a week ahead. I did. Different person said, call back at 72 hours. I did. Different person said I was calling too late and that they couldn’t possibly get a referral out that soon and I’d have to reschedule the appointment (that I’d waited weeks to get). Do these people all get different training manuals? And each was POSITIVE she was telling me “the way it is”!

Now once I did get hold of the person and they agreed to help me, she started with “What’s the doctor’s name?” And I told her the group name. “Must have the doctor name or insurance will bill you as out of network and we aren’t responsible.” I tell her that I’m a new patient to them and they told me I would be seen by the first available doctor. (audible grumbles).

“Why are you seeing this doctor?” I tell her it’s because my PCP (her boss) told me to go to this group for follow up to a CT result. “That’s not something I can code. Why are you going?” I start to tell her a few basic details. “I don’t need all the details.” I was wishing I could have a stat script called in for a “Chill out pill”. Either she or I could take it … it didn’t matter. I guarantee my PCP has no clue her front office staff is this rude or inconsistent in dolling out policy as if it’s the Magna Carta.

 

Or this week, I showed up to a specialist for a follow up. They have no record of my appointment. They look at their computer and tell me the appointment had been for that time but for the day before. I pull out the appointment slip given at the last appointment. I was there on the date/time of the slip. She looked and said, “We changed it” and proceeded to tell me I owed the $25 for a no-show fee. Not sure how I could be responsible for their change and for not telling me. (I nicely declined to pay.) Whole thing had to get rescheduled as the doctor wasn’t in that day.

Or the whole notion of asking for our health history but not actually believing anything we say. I understand patients are often not forthcoming or are not accurate in their health history or even compliant with things such as meds. I’m certain that must be exhausting. But on the other hand, there are highly engaged and reliable patients who keep medical records due to OCD.

One example of that is my son was going to his not usual hospital for a sedated procedure. I handed the anesthesiologist my (abbreviated) record from our usual hospital about his troubles with anesthesia. He dismissed me.  A bit later, they had to come get me as my son was having horrible troubles with airway. They knocked out several teeth, did emergency airway, left bruising, etc. All to save his life. (For which I am grateful.) However, I’m also frustrated because this was completely avoidable. The reaction he had is exactly what was in his record. Why weren’t my hospital records believed?

Next issue: Informed consent. This is a tricky concept. Can a patient every TRULY be informed? Can they truly understand the risks, benefits and alternatives? Probably not. Afterall, we didn’t go to medical school. At the same time, it’s an important step. And not one to be glossed over lightly. I have a friend currently experiencing a much longer recovery time than was told. She was told about 3 days. It’s going on 2 months. And while this is still in the realm of normal, she wasn’t even told this was a possibility. And she’s a nurse!

I have to imagine it’s exhausting to a medical professional to explain over and over and over a procedure and its risks/benefits. There must be explanation fatigue. Afterall, they have likely told 1000’s of patients. But for THIS patient? It’s their first time. And they deserve the best explanation, just like it was their mother or sister or daughter. How to do this? I have no clue. I’m simply saying that patient safety is also tied to patients understanding.

And before you think I’m down on the whole profession – I’m not. There are doctors and front office staff who are amazing! They truly understand patient perspective. They educate and inform. They collaborate and partner with the patient to help promote the best quality of life. Unfortunately, these are becoming fewer and further in between in my experience.

My advice: If you work for a healthcare organization, do your best to provide good, basic customer service. If you are a patient, be kind as you advocate for yourself and your needs. But get your needs met.

This isn’t easy. But it’s not just a meal. It’s not just a restaurant we can choose to go to or not. It’s our health. And that’s worth the effort to figure this out.

PTSD or is it CTSD? Current Traumatic Stress Disorder

PTSD: Post Traumatic Stress Disorder.
If you google PTSD, the first words to pop up are, "anxiety and flashbacks triggered by a traumatic event". Below is an image of some of the common symptoms.

However, there's basically nothing about what I'd like to call CTSD: Current Traumatic Stress Disorder. That's what medically fragile patients and families deal with. The triggers are CURRENTLY happening. Not in the past, but NOW. They're not imaginary things triggering flashbacks. The events inducing stress are happening NOW, PLUS triggering the PTSD.

In PTSD, say a person who had experienced a violent break-in gun point robbery in their home. Maybe they heard breaking glass first. So say they're in a restaurant one day and a glass breaks. They're right back in that moment. It's not real. But it triggers all the old feelings instantly transporting them back through flashbacks.

But if that same person had a second violent break in, it would be the PTSD from the first one but also the terror from the current one.

Now imagine that over and over for YEARS with no end in sight.

That. Manny lives there.

Now as you let that sink in, I'll add one more layer. My layer.

Back to my break in analogy. While the violence is happening, I help the robber hold down my kid. I welcome him in. I tell my kid to stay calm through the pain and unpleasant and terrifying events.

So I hear breaking glass, I know he'll be terrified and hurt. And I know I'll have to try to keep him calm throughout. I know I'll try to convince him it's for his own good. And he won't believe me. In fact he'll lie and tell me he's not in pain or his tube is not broken or his blistered skin is better. He'll beg me not to let the robber in this time.

Repeat. Multiple times a day. Multiple times a year. For years. With no end in sight.

In fact, there's a metaphorical robber in my house right now. We are waiting for a call of when the next part of the trauma will begin. Likely Monday or Tuesday. Until then, I'm trying to keep the robber hidden. But Manny knows he's there. We both try to pretend he's not.

And my brain goes to how to better protect my kid and house for the next one after that. Could I make better decisions so he'll not end up here again so soon? It's why I've become OCD in so many areas of life. Every time I find a new vulnerable place, I board it up.

I'll add that first responders (military, police, firefighters) etc are also greatly affected. It's under recognized and under supported. They are PTSD/CTSD as well. And probably a few other very challenging jobs I've not even considered. Different details, same effect.

And when one family member suffers from this, the whole family suffers.

I could go on and on explaining this concept. For those living it, they're like "preach it sistah!" And for those who don't live it, be thankful you can't begin to truly grasp this concept.

Bottom line: if you know a family who lives in these type of trenches, pray harder for them. They're probably barely surviving. They're in survival mode and don't know how to reach out and ask for help. They are too busy fending off the past, present and future bad guys to figure out what they need. So be there for them. Give them space but let them know you're there. A meal. A card. A gift card. Help clean their house. Babysit. Pray. And expect nothing in return. Do it for them.

Most of these families have lost most of their friends over time. They are busy trying to get through one day at a time. Doesn't make for fun conversations over coffee at Starbucks. We aren't much fun at a party. We have very few shallow things to discuss and little patience to do so. We are traumatized. (That's the T in PTSD).

And the longer it goes, the more we realize this will never end. THIS is our new normal. And how do we make the best life from here? We continue to get up every day and make a stab at our new normal. Aware that every day, we've lost a little bit more of it.

And while it's not a hopeless place... It's a terrifying place. Those who know me know I laugh way more than I cry. I have a continual smile on my face. I'm hopeful. I'm optimistic. I CHOOSE to focus on the good rather than the bad. Daily. I force myself to see the hope and light and love and outright miracles that surround me daily. I feel the support. I know we are loved. I feel the prayers. I live there.

In fact I live there so much, most people probably had no clue Manny and I also live in the land of CTSD as well.

And so do thousands of others.

Today my goal is to raise awareness. Those of us living with PTSD or CTSD are among us. They are messy and hard to love sometimes but love them anyway. Identify those people in your life who maybe living it. Reach out to them. You may be their only lifeline.