Thou Shalt Not Stand Idly By – Yet our health care system does – Kait and Ted’s story

“Thou Shalt Not Stand Idly By.” Click to enlarge, courtesy Iris Eytan, Esq.

My sister, who I wrote about recently, took the photograph in this post when I asked her, “What inspired you?” because she inspired me. I remembered visiting her a year ago, while she was working on the case, and how resolved she was to make sure that Tyler would not be imprisoned unjustly because of his disability. Last week, she was successful.

This picture hangs on her office wall – you can see the Denver skyline in the background. On the bottom of the photo you can see 3 years of work to save one person, Tyler Sanchez. On the top of the photograph is the inspiration (read more about the origin of the expression here).

The picture shows what it takes to save a life. Sometimes it doesn’t take much work. All of the time, it takes the ability to care.

The people who serve in the health care system, who are uniformly exceptional in my experience (you have to be to do a job this hard), have an incredible ability to care. 

Why does our health care system not let them?

What happened last week – Kait and Ted’s story

On Tuesday, Kait sent me an e-mail with just the subject : “Advice?” In it, she described acute withdrawal symptoms she was having from her anti-depressant because her mail-order refills had not arrived in time, and did I have any ideas that did not involve an emergency room. There were a few complications – she was not in DC at the time, she was in Baltimore visiting her girlfriend.  Her primary care physician, based in Maine, was not available because of a state holiday there.

I immediately called her and proceeded to do my best to help her get care urgently.

I contacted the Baltimore Medical System and reached a medical center manager, who said Kait could not be seen that day. She escalated the issue to the Medical Director of the entire system – could she be evaluated quickly and given a refill of her prescription to arrest the acute withdrawal until her regular supply arrived? 

She called me back and said the answer was no.

I was told that all of the care providers were full that day and a new patient would not be seen that day. Now, I have been to Baltimore Medical System (see my blog post from the experience: “A resilient population” – Baltimore Medical System”)  and I believed what they told me. I was told that she would need to go an Emergency Room or attempt to book for the next day, with no guarantees.

I gave these options to Kait. Johns Hopkins ER it was going to be. Again, I tried to assist by calling the Johns Hopkins ER to facilitate the care for them and for Kait. It usually makes things easier/faster for everyone, if the receiving physician can know what’s going on – the “warm handoff.”

I called the Johns Hopkins Physicians Access Line, for an emergency physician referral, which is what I could find on their web site. I was transferred and then hung up on. 

I asked Kait to keep the communication up by texting me her experience as it happened. Here’s the interaction between us:

Kait:: I fear the fix is a very long way away. Until we get parity through govt, no insurance will bother to cover it properly. 3:13 PM
Kait:: In a room. Eye exams happen here. But I’m guessing they just want me to be seen. Hahaha 3:24 PM
Kait:: No idea what will happen here. No one has asked me for proof of meds, taken a hx or asked any pertinent questions. 3:25 PM
Kait:: They did ask if I had any pain. But they didn’t mean emotional- I don’t think. 3:26 PM
Kait:: They did a survey. Do I want more info on depression, high blood pressure, and several other things I’M ALREADY BEING treated for. 3:27 PM
Kait:: I answered no. They also asked if I wanted an HIV test. And they tried to tell me it would be anonymous, even though it would be in my record. 3:32 PM
Kait:: They also asked if I would be willing to use a kiosk to check my med record and make sure the info/med lists were correct. I said YES! 3:38 PM
Kait:: Ok, now have seen an NP. She is really good. I may have to be really nice about this experience. 3:39 PM
Kait:: Script in hand 3:51 PM
Kait:: Seeing about a voucher for $ for meds 3:54 PM
Me: Cool! I’m saving these texts. 3:54 PM
Kait:: Amazingly kind. 3:56 PM
Kait:: ER security totally dropped the ball and sent me on a snipe hunt for the wrong social worker. Heading back to ED to get the RIGHT social worker. 4:00 PM
Kait:: Apparently the correct SW is in a trauma room right now. Left hand, right hand – get familiar. 4:03 PM
Me: Omg this is getting hilarious. 4:36 PM
Me: It may be more therapeutic than the medication 🙂 4:36 PM
Kait:: Yes. And I saw the SW finally, but -get this. The vouchers can’t be used for Psych Meds. 4:41 PM
Kait:: So I have two discount cards. My girlfriend will front the $ if I need more than I have to fill the 15 pills. 4:42 PM
Kait:: Laughter IS the best MED. 4:42 PM
Me: Totally! I am on board but my gvoice will store the SMS for storytelling purposes. Keep laughing. 4:43 PM
Kait:: When I’m not sobbing… 4:44 PM
Kait:: 🙂 4:45 PM
Me: Laughter always wins. Send the serotonin soaring. So does love. 4:45 PM
Kait:: Yes, that too. 4:46 PM

See something interesting? As she gets closer to a human being in the system, the “care” part of health care becomes more apparent.

If you think this only happens to people without access to care, you’re wrong. 

I am breaking the silence on an almost identical incident with someone very close to me, my mother, who, as a medicare beneficiary has access to too much care.

She was referred to a sub specialist for a superficial nerve block for severe pain – the kind of nerve block that a family physician can easily do (I have done many myself). When the injection did not work and she called the office of the sub-specialist in severe pain, she was told by the office staff, “Go to the emergency room, we are full this afternoon.” They were adamant, she told me.

I know what would have happened if she went to the emergency room -> narcotics, maybe an admission to the hospital, maybe an infection, a medication error, a fall. All because of a failed superficial nerve block.

I called the sub specialist’s office from 2,500 miles away, got the physician on the phone and asked him if it was possible that the injection was misplaced and could he try again (it is possible to miss the nerve). He agreed this was possible and pleasantly and helpfully said he would be happy to and could my mother come right in. She did, he performed a re-injection and the pain was completely relieved. 

Commonalities – amazing people, less than amazing system

With all of the talk that the emergency room is overused and medical homes are the answer, where’s the walk?

In Kait’s case it was made clear to us that this medical emergency, easily treated in the outpatient setting, would not be managed anywhere but an emergency room, against her wishes, and really against appropriateness. What if she was hemorrhaging blood instead of serotonin, would the outpatient system turn her away before stabilizing her? Acute anti-depressant withdrawal due to lack of medicine is a complete waste of Kait’s time. It could have wasted her life. 

My family’s entire experience could have started and ended in a family physician’s office, without any intervention from me.

Making every day count

I’m going to reveal something in this post that Kait doesn’t know yet. I was able to receive her e-mail and act on her behalf because of a mistake I made right before she contacted me. I read the time wrong on a flight and arrived too late to the airport. I missed the flight, I would lose a day of travel, and it was all my fault. As I walked away, I said to myself that I would make sure that this day counted for something. Now, I am so happy that it did.

People who know me know that I do not use my physician credentials to facilitate care for myself – I don’t even like being called “Dr.” When it comes to other people, though, I will leverage the credentials to the max (just the “MD” part, which I own, not my employer’s name, which I don’t own). That’s why society provides those credentials to us, to be used to lessen suffering. 

Not standing idly by.

I really want more than to lessen suffering for just Kait or my family, though. I want our health care system to change. For real, not pretend.

And…. the only solution I have found, the only one, after 20 years in medicine, that will solve this problem, is to have the patient in the room.


Kait Roe has given explicit permission to share details of her care experience on this blog:

Ted, I LITERALLY have no secrets. If someone doesn’t hire me because I have a mental illness (which this episode clearly shows is controlled phenomenally by medications) I don’t want to work for them. And wouldn’t that be a fun post! As for the choices. Print it all, again. I mean that – and I’ve been back on my meds for two days and feel quite myself again. No crying for two days! 

7 thoughts on “Thou Shalt Not Stand Idly By – Yet our health care system does – Kait and Ted’s story”

  1. Ted, again and again I am amazed by your willingness to step into the fray on another’s behalf. (Apparently, it runs in the family.) Your clear description of the events of that day and your stunning reveal about missing your plane remind me how blessed I am by your presence in my life. It was you who introduced me to Regina Holliday, who has become my friend, mentor and housemate, and you who believes so heartily in the importance of the patient being in the room, every room, yes even that one. The truth is that the only way the health system will or can change is if EVERYONE is in the room and EVERYONE is being heard: the docs like you who advocate for true health care and sick care, the patients like me, who knows my body better than anyone else, the companies like Kaiser who advocate for treating the whole person to achieve better health outcomes, the providers, (docs, nurses, and everyone else) in the busy Emergency Departments who do their best to care for too many people in too little time, the social worker who sees the needs the docs can’t take care of, and all the others in this broken system. We have to be a team to make it through. None of us can make the system better without working together. I remind you of a statement I made last summer: “Patients without doctors will die, and doctors without patients are just scientists with nothing to do.”
     
    I needed you the other day. I needed your support, your advocacy, and your friendship. I am so grateful you missed that plane.
     
    blessings and gratitude, Kait

  2. Ted, I wanted to comment further as I woke this morning with a bit of a bug in my ear – I just wish my experiences were unique. Sadly, as Ted, so eloquently writes, this is not unheard of – or even rare.  Every day we force patients to go where they shouldn’t, simply for lack of systemic availability or due to rules built to save provider time or any other number of reasons. In my opinion, there is no greater problem systemically than that of ACCESS. From my inability to see a provider on an urgent basis (for a med management issue – dealt with APPROPRIATELY in an outpatient setting, to Ted’s mom not being able to be seen in HER OWN DRs office for an urgent follow up (again appropriately managed in the outpatient setting) the system consistantly and CONSTANTLY funnels patients to the Emergency Departments rather than using “open access appointments” (which has been shown to work quite nicely). Another friend of mine with plenty of insurance can’t get in to see HER OWN PRIMARY CARE PROVIDER for an urgent matter for 10 days to 2 weeks. This isn’t health care, it is systemic attrition: only those willing to wait for that long will be seen in the office… the rest will suffer until THEY MUST GO TO AN URGENT CARE PROVIDER OR THE EMERGENCY DEPARTMENT, or they will never go – leaving the problem unattended until it gets significantly worse or magically resolves itself (leaving behind much completely unnecessary pain or suffering or both.) As an advocate for patient inclusion into redesigning the system, I often sit in the room with truly well meaning policy makers and providers who, like Ted’s mom’s provider – who don’t even know their patients and friends are being sent to the Emergency Department until it is too late. My voice, and the voices of those other patient activists and advocates are often THE ONLY voice telling the story of actual experiences. How could I walk in the world knowing what I know, and NOT speak up?

    1.  @kaitbr Kait, Thanks for taking the time to add your perspective and to do as you’ve done, point out that this is not about a specific person or health system. At the same time, you’ve brought in your experience as a specific person with a specific health system which makes the story powerful and undeniable. A patient has the power to do that. Thank you,
       
      Ted

  3. @tedeytan Thanks for the mention! Enjoyed reading your post. We got to rock the boat. Healthcare needs to transform before it can reform.

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