Invited to Sit

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It was the second to last day of my husband's radiation therapy at the end of a two-month course of weekly chemo and twice daily radiation. The radiation therapist asked if he'd like the earliest appointment the next morning so he could get done with treatment right away in the morning. He happily took the 7am appointment. The next day when his radiation was complete at about 7:10am, I said I was going to take him home and put him to bed. He was weak, tired, sick.

The radiation therapist said "You can't leave, you have to be seen in the clinic to get discharged." This is the first we heard of a discharge visit. We didn't have an appointment in the clinic. The clinic didn't open until 9am. There we sat in hard waiting room chairs for two hours to get discharged. I was really very angry. 

I will never understand why we were invited to come in early, just to sit for two hours. I have asked myself this a hundred times.

Cruelty ... in just a few characters

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In our September Tweetchat about Why We Revolt, we used Twitter to reflect on cruelty in healthcare. The examples illustrated how cruelty often happens in the asides and how an off-handed comment can stay with someone. If you have a story to share, submit it to our story library. And join us for our next Tweetchat on Monday, Oct 15 at 9p ET/6p PT. We’ll be talking about solidarity.

Faces of Waiting (for the Doctor)

For the past 20 years I have been living with a little thing called type 1 diabetes. Because of this wonderful thing, I have had numerous doctor's visits, medical scares, and emotional roller-coaster rides. I have to admit that I was in my early twenties. Wearing tight jeans and a cute top was more important to me than my diabetes care. As I've grown older, I have seen the error of my ways then, but at that present time, I was not terribly concerned about who was on my diabetes care team. 

So I strolled into a clinic that had an elderly gentlemen as the head endocrinologist. He had pretty good reviews online, tons of patients, and had rebelled against transferring all of his paper documents to the online format. I always found this funny because he figured he'd rather pay a huge fine every year than make his nurses transfer all the files. Also, with no electronic tracking, making appointments and keeping track of prescriptions was insanely difficult. 

I have one very memorable visit to his office that describes this doctor's poisoned thinking perfectly. My appointment was at 8:30 in the morning. I had taken off time from work to make this mid-week appointment and about 30 minutes of waiting in the waiting room...I was getting a little pissed. Not to mention, when I checked into my appointment 15 minutes early, the waiting room was empty then quickly filled to capacity within those 30 minutes of mind-numbing waiting. 

Finally, my name was called. I walked in and was given the once over by the nurse. My blood pressure was good, blood sugar within range. Good job little lady! Let's check your A1C...it's 7.2! Way to go! The doctor will be right in. Another 15 minutes of waiting went by...and I needed to talk to him to adjust my prescription. Well, the nurse strolled back in and said the doctor wouldn't be able to see me today. Could she help me with whatever else I needed? (Little did she know, the room was right next to his office and I could hear him on the phone with his wife talking about their upcoming vacation). I told her no, I need to see the doctor today about a prescription change. So...I waited. And can you believe this man? He had at least 10 patients waiting for what reason? To talk to his wife? Not about an emergency or anything, it was just about what kind of clothing she should pack for their upcoming cruise. 

After another stint of waiting, the doctor waltzed in. He had a huge grin on his face, apologized for the wait and said it was always so nice seeing me. Then, he congratulated me on my A1C and began to explain that he loved seeing me because his other patients weren't thin, young, beautiful women. The condensation in this man's voice knew no bounds. He then asked me what I had done for St. Patrick's Day. "A young girl like you should have been out on the town!" Yes, ladies and gentlemen, my endocrinologist hoped that I was drinking and celebrating on one of the most drunken holidays of the year. I told him politely that I didn't have the money to go out and drink, and I'd like to talk to him about a change in my prescription. 

The thing I had waited so long to talk to him about took all of 5 minutes to resolve. I headed out the door clearly frustrated followed by his voice saying, "grab a vial of insulin on your way out!" I think one of the main reasons I put up with this doctor was because I left his office with 1-2 extra vials of novolog. I was stockpiled for the year. But after this visit to the endocrinologist of horrors, I did not return.

 I'm on time. Let's do this.

I'm on time. Let's do this.

 Ugh. What is the purpose of being on time when no one else is.

Ugh. What is the purpose of being on time when no one else is.

 I cannot believe I've been waiting for an hour for something that will take 2 minutes!

I cannot believe I've been waiting for an hour for something that will take 2 minutes!

 Finally the doctor is here. I can't act too frustrated or they might run away. Silent scream it is.

Finally the doctor is here. I can't act too frustrated or they might run away. Silent scream it is.

Being seen as a human being

I was just a year or two out of college and I was not getting anywhere in finding relief for Ulcerative Colitis. The GI doctor I had been going to just gave me the same story every time, I never felt like I was being heard. He was not even open to trying different or newly approved treatments. I ended up switching to our local teaching hospital when I was running out of mental and physical energy to keep fighting. They were able to get me into a last minute appointment. During that appointment, we went through my disease and medication history and all of the normal things, and then the doctor looked at me and told me "You deserve to live your life." and I cried. I had never heard anyone, let alone a physician, recognize that. I had been so wrapped up in the daily task of managing symptoms and trying to manage life, that I had barely recognized it myself. It was the first time that a doctor had ever recognized that I was a whole person, not just a vessel of symptoms.

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Being seen as a human made me feel SO much more validated, and also I was able to trust that I was in much better hands with this team. And it was true, they worked with me to find the treatment that I am on now, and I've been in remission for years. It has made all the difference.

Electronic Billing Record

I'm an old guy. A survivor. An ER doc form the early 80's. Not burned out. But plenty burned up. And, from the great position of a curmudgeon, I'm mad as hell and I'm not taking it any more.

My "not taking it" does not mean I'm leaving my profession. I've loved every day of it. (OK, maybe not every. I've had bad days like everyone else.) But I've had the immense privilege of checking people into and out of this life. And of one thing I'm certain: when the moment of greatest need in life comes along, no one is asking for the administrator on call.

So I'm calling it as I see it.

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If the EBR (some call them EMR; they are not. They are for Billing, not Medical) doesn't work, don't hire scribes to worship at my feet and try to cover up the EBR's problems; fix the damn system! To do aught else is as unethical as it would be for a surgeon to continue to use an instrument she knew was not working.

Absolutely, these issues are not physicians' problems.

These are existential issues which the general public, for its own good, must take up.

Everything is going to be fine.

I remember the whispering sounds in the surgical suite. I remember looking down and saying “everything is going to be fine.” I knew if I could just get back out on to the race course everything would be fine. 

Everything wasn’t going to be fine. I woke up with a traumatic brain injury that made my bipolar disorder widely volatile. 

Everything wasn’t going to be fine. A year later, I sought admission to a hospital with profound depression & catatonia. That was a fateful admission as I met psychiatrist who knew how to reach me when others couldn’t. He had kind words.

My psychiatrist told me that we would use all of modern medicine, mostly I remember him telling me that I was pure, perfect & whole. I didn’t know what those words meant, but I felt them deep in my soul. It reminded me that my soul was a vast part of a whole. It reminded me that I wasn’t alone. That loving reverence for me as a whole person made all the difference. I wasn’t afraid.

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Unfortunately, I wasn’t responding either. My doctor told me that I was protecting my heart from what was happening to me. Five weeks later I agreed to a course of ECT treatments, that luckily worked for me when all else failed. I could move on with my life.

My dog gets better healthcare than I do

I am in my mid-50s, and I remember a more personalized and team-oriented approach to health care. Maybe that is why I am so angry, confused, and hurt over the way I am now being treated. Let me explain: In the 1980s and 1990s, when I had my four children, I had a wonderful health care team (doctor/midwife practice.) When I called my doctor's office, a real live person answered the phone, and she knew me by name. When I came into the office for prenatal checkups I was invited to weigh myself, then do my own urine test, and record the results. If any issues of concern came up, my doctor would sit down at his desk, in his office, and have a full-on conversation with me about the implications and the options. I was expected to make my own decisions about my health care with the input and advice of my medical team - and we were a TEAM, this was not a dictatorship. 

I was comfortable with this practice and stayed with them for many years until I moved away. I spent years searching in vain for a physician like the one I used to have. I tried a few practices, based on recommendations, but found that doctors were now taking the "hands-off" approach to their patients. If labs indicated a condition that required attention, a MA would call and inform me that "Dr. So-and-So has ordered this test or that medication." If I questioned it, or wanted more information directly from the doctor, I would be told, "Dr. So-and-So doesn't speak with patients about test results." Well then that isn't the physician for me! I called other practices and asked if I could come in for a paid consultation just to meet with the physician and see if he or she shared my health care philosophy. To this I got answers like, "Dr. So-and-So doesn't do Meet and Greet. You have to select him as your primary physician before you can get in to see him." Even though I was willing to pay out of pocket, if necessary, to find a practice in which I was an equal health care partner, I was unable to book a single appointment in which I could interview the health care provider to see if he or she met MY needs. As a result, I began to let my regular health care routine slide as I had no physician I trusted or felt comfortable with. I resorted to Urgent Care for the occasional illness, and otherwise avoided doctors altogether.

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Now, I belong to a managed healthcare system which is what I am forced to use to comply with the ACA. As I'm getting older, I continue to live a healthy lifestyle (I don't smoke, don't drink alcohol or sodas, eat very little sweets or junk food, exercise five days a week) yet I still struggle with conditions like high cholesterol, elevated blood pressure, and weight gain after menopause. Staying healthy is more challenging than ever, and I am seeking support in managing these conditions with the least amount of pharmaceuticals.

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At my most recent appointment, a very young doctor who had never met me before, and knows nothing about me whatsoever, informed me: "Your conditions are due to your lifestyle. You need to lay off the sweets and get some exercise." Well I rarely eat sweets (I don't have a sweet tooth at all) and I regularly exercise, which I've done all my life. When I explained this, she nodded her head in a way that clearly conveyed her contempt and disbelief. She was probably remembering her medical school training that "all patients lie about their lifestyle habits," and dismissed what I was saying.  

The message I walked away with after his last appointment was, "you have brought all this on yourself, and you deserve what you got." Even if that was true, I don't see where a doctor should judge and shame patients for their health. To her I am just Non-Compliant Patient #12345 (at this practice we check in with our Patient ID number, not our name, and if we call for any reason, we deal with an automated system that asks for our number.) A visit to the facility makes me feel like I am on a conveyor belt - identified by a number, herded into a common hallway to await a summons to the inner office, processed, then left to follow the signs back out to the hallway. No greeting when we come in, no greeting when we leave.
 

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To illustrate the point further, a few weeks ago I took my sick dog to the vet after making an appointment with a live person who spoke to me by name. The next day, the vet called me personally to ask how my dog was doing. He spent at least twenty minutes on the phone explaining the lab results, what they meant, what the treatment options were, and empathizing with my dilemma. He urged me to call him back directly if I had any more questions.

In other words, my dog now gets better health care than I do.

Cared for the whole of me

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In college, I had the university’s PCP take care of all my diabetic needs. She was always encouraging me to take better care of myself and maintain a stable HbA1c. I talked about it but struggled to reach my goals. After two years of trying, I finally hit my goal and she called me after she got my lab results, cheering for me and was super happy about it. I’ve never seen anyone be so enthusiastic about my results and it truly stuck with me. That doctor truly cared over my well being.

The second was during my high risk pregnancy with my daughter. I was referred to a perinatologist to monitor my insulin pump and dosages. He immediately ordered a continuous glucose monitor which truly changed the course of my diabetic management. And despite all the worries and the panic of the occassional high blood sugars during pregnancy, he kept me calm. His guidance and instructions continue to help me maintain my health. I’ve truly learned a lot in the nine months under his care. When baby was born, I was truly sad that I don’t get to work with this doctor anymore.

Kindness touching a nerve

We had a new chronic condition diagnosed and an oral medicine that needed to be taken 4x/day 30 minutes before each meal or snack.

This was somehow VERY DIFFICULT both to remember and to do with correct timing. You’d think (or I thought) it would be easy for people with diabetes to add in this small extra step, since we already have to think ahead about every bite. But it was HARD for us.

We had a doctor, a fellow, who gave the impression of having plenty of time to listen, ask how it was going. We said it actually felt really burdensome to have to take this medicine and she told us she’d see about getting rid of it, since they weren’t confident it was even having any effect.

That was so awesome. We are so happy to not have to take that stupid medicine.

She probably listened for 30 minutes to me describing how hard it was to get the medicine ready at the right times. I feel any other doctor would have just said to keep trying harder, or would have been worried about eliminating a drug that might be helping the condition.

This kindness really touched a nerve!

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The view looks bad from both sides

The following story was submitted by a doctor who found himself in a caregiving role for his parents.

I've been on vacation to visit my parents (both 86).

Got a call from mom on the way that my dad got admitted for a GI (gastrointestinal, or somewhere between your mouth and your intestines) bleed. Met him at the hospital. The facility is large, elegant, and spotless. Employees all well dressed and polite. All the paperwork is legible and voluminous:  but it isn't helpful at all.

Later that night, my mom came by ambulance to the same large hospital with an ACS (acute coronary syndrome, otherwise known as a heart issue). She hasn't been a patient since her last child was born. Both are fine now and home.  

Both discharged after very slow care, rarely saw a doctor, and waiting 4 hours for a "discharge order". My dad almost signed out AMA because they wouldn't let him leave the floor to visit my mom...in the same hospital.

Both had more than 4 significant medication errors with no medication reconciliation. (This is when a clinician reviews and confirms all your medications to make sure they know what you are on and can look for possible problems or likely problems.) We did hours of "dining room table medication reconciliation" yesterday. No one shared tests results until we asked.

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We followed up with my dad's PCP (a very nice guy in a run down, rural, private office.  There, we found "kind care". Here is the posted "opioid policy":  shorter and much more sensible than in our practice, I think....and more clear. One could argue it is not "kind care" but at least it is clear.

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Nothing is more helpful in seeing how broken our system is than being a patient or being with a patient.

Reading the book "Why We Revolt", by Victor Montori, made me realize I could add a couple chapters. Medical care is in very sad repair.