To All My Providers

Recently I have written a lot of long missives to separate providers and the administration of the health center where they practice regarding everything from emails to insurance coverage to health issues to theories of patient engagement and care. For weeks I’ve been debating whether to simultaneously email my entire care team and tonight felt that I was ready to do so.

This is a message to all my providers:

Because I am used to providers viewing my actions as part of my mental health illnesses, I ask you to set aside any bias to pathologize my assertiveness and the following communications.  Beyond my diagnoses, I am someone who is dedicated to the ideals of providing care that is, among other things, high-quality, available, accessible, and patient-centered.  I believe every patient deserves such care and I believe that we are all working toward that end as providers, as patients, and in industry. In my educational pursuits, my professional endeavors and personal life, I have focused on health as a human right which encapsulates those ideals.

I wish that providers had more time to get to know their patients.  The ideal that each provider might have more time with each patient is one long sought and might one day be achieved in new care models like Patient Centered Medical Homes.  For doctors this might ease the burden and pressures you are currently under in providing care.  For patients this means that their doctors might have time to “get it” (ask me about that story later – it’s a good one). Because I think at the end of the day it’s the not knowing me, the not feeling listened to that is the most difficult.

When I consult with government agencies or patient advocacy groups, speak at conferences, engage online or the myriad other places I’ve been honoured to have the chance to represent the patient experience, I ask them to remember one thing above all.

Every patient wants to be seen, heard, understood and respected.

Truthfully that’s not even a patient thing, that’s just a human thing.  But when you are lost in a healthcare system that is immensely frustrating and overwhelming no matter where you come from or what you know, you simply want one thing to hold on to – that you aren’t alone in this.

And yet…

In this email alone there are 12 providers.  There are 4 more not on this list and 1 more I have an upcoming appointment with and thus haven’t added and probably another doctor I’ll have to fill in at some point.

So currently 16 providers currently involved in my care.

16.

My question then is –

If I have 16 people involved in my care, how do I feel completely alone?

This does not even account for your RNs, NPs, MAs, social workers, front desk staff, billing departments, records departments, administrative assistants, and so on that make up the care “team.” Nor does it factor in insurance and the pharmacy or even the IT department that runs your portals and records systems.

So many people who are set out to help me and yet I feel like I’m constantly fighting just to get by. How is it that I feel like I’m barely able to breathe?

One of the biggest buzzwords in healthcare for years now has been – “connected care” or when it comes to HIT “interoperability.”  It’s one of the pillars of the PCMHs I mentioned above, this idea that the patient is at the center of care and all of the providers are working WITH each other, ACROSS systems and departments, to address the patient as a whole person.  I love this concept.  I also recognize that it’s probably never going to happen.  But I wonder what could happen if it did…

What if when the spine surgeon sees the results of my CT scan those are immediately passed on to the rheumatologist who may want to follow issues of osteoarthritis in my future care?  What if when my PCP orders the labs for my B6 and TSH the results are passed on to my psychiatrist as they directly affect my mental health?  What if my gynecologist and my gastroenterologist consulted with my therapist about the implications that their care has on my PTSD and they looped in mypsychiatrist?  What if my neurologist didn’t just referred me to the pain management clinic but followed up with her results?  What if any of my providers were available to consult with the hospitalists in the ICU when I had my suicide attempt in December?  What if I had a way to enter into a system every lab result that I’ve personally collected for the past 14 years so I can track trends in my health, so that I wasn’t the one responsible for trying to find anomalies and you could more quickly address issues I may be facing. What if…

What if I weren’t the one who had to coordinate that all which is what seems to be my job any more.

I feel like I can hear you in my ear (not in a hallucinatory way) saying – “but we don’t have time for that,” or “it’s beyond our scope of practice,” or “HIPAA,” or a million other arguments I hear in the healthcare policy realm. I get it, I’m asking for something that doesn’t exist and doesn’t exist for some of those reasons.  But that doesn’t mean it couldn’t exist.

At Stanford’s Medicine X conference every year they partner with this design firm called IDEO (the people who brought you the palm pilot, the apple mouse, swiffer, and many more amazing ideas).  Their work is centered on innovation and creating solutions that have never been seen before. And the way they begin creating these is through a simple prompt:

“How might we…?” 

How might we – not just at a systems level through bureaucracy and politics, but you and I personally – how might we do better?

I have my role in this too. Part of that role is asking you to come together.  Part of it is staying engaged in my care (and not giving up, which seems so much easier just now).  Part of it is being clear on my needs and in knowing and respecting your boundaries and abilities.  I think the biggest part for me is showing up because honestly these days that can be harder than getting a man to mars.  Simply showing up, breathing, and not becoming overwhelmed.

I’m doing better in this last 5 months than in the last 3 and a half years.  Part of that is knowing I have all these doctors in place that I can contact when I have a concern.  Most of that is the work I’ve done with my therapist.  A lot of that is the stability friends have provided me.  And the rest is grit.

To be honest, I don’t think that you will heal me.  I look at the long list of diagnoses and the long list of medications and even this email list and the reality is pretty harsh. Since I can’t keep a job at this time (partly because I’m seeing you all the time 😛 ). I set myself to understanding my diagnoses, particularly my mental health diagnoses, – including the options for treatment and ongoing research that may provide answers but won’t provide any cures. I don’t have a medical degree and I don’t claim that my experience as a patient or with google will substitute for your knowledge. That’s why I still need you.  But if each of you only addresses one part of me, how can we see the bigger picture and hope to actually treat me?

But I’m not a hopeful person.  In fact, I bristle at the word “hope” because it has done me more damage than service.  I don’t have hope that most of my pain physically or mentally will be ameliorated. Maybe some progression slowed, maybe you can give me a moment where I can breathe before it all sets in again.  Yet I do believe their might be hope that if we work together, if all else fails for me, we can all learn something in the service of helping another. Because more than I want to be able to breathe, I sincerely do not want any other person to know the pain that I have and do know.

I’m not catastophizing here.

In December in the psych ward I nearly got in trouble with the nurses.  You see when you’re admitted to any hospital, but especially psych wards, they tend to get your meds wrong – there’s always an issue with entering them and getting them ordered and not having the meds you needs, etc. – at this point I’m used to it (for example, once going 36 hours without insulin).  But my roommate had never been in a psych ward and she had no idea.  She was about 60-65 and came in at around 3 or 4 in the morning (which only makes the med issue worse) and she was scared (as scared as I was my first time at 20).  That morning when we were supposed to go to the first group, she couldn’t get out of bed because she was in so much pain.  Her pain meds weren’t ready and the nurse was too busy to come down to the room.  My roommate was curled up in a ball and could barely ask me to move the trashcan near her because she felt so nauseated from the pain.  So I brought her the trashcan and I sat on the floor beside her and I asked her if she wanted me to sit with her and if she wanted to hold my hand.  She did and I stayed and she breathed. The nurse finally came sometime later chastising me – angrily telling me I should focus on my care and not others. I understood what she was getting at.

Here’s the thing though – I’ve been where that lady was too many times.  I know that pain is quite literally the loneliest and most desperate feeling a person can experience.  I know what it’s like to go into an ER and be set up for surgery and wish with all your heart that you didn’t have to go through it alone.  I know what it’s like to be sitting in doctors rooms receiving diagnoses that will change your entire course of being and no one to call after to say – I’m scared.  I know what it’s like when a doctor or nurse can’t help you and you can barely breathe and all you need is to not be alone in that moment.  I know what it’s like to sit at the back of your closet as a kid, scared you’ll be hurt and wishing that you weren’t alone.

We can look at that incident in the psych ward in a number of ways – negatively we can consider it as me crossing boundaries or as projecting my issues on to the situation.  But it’s one example of why I fight so hard to not just be your patient but be a colleague in my care – to teach you as much as you treat me – so that patients are never left feeling that alone, that scared, in that much pain with little hope.  No patient should know that.  No person should know that.

I suspect that’s why you entered this field and continue as doctors – particularly those of you who are faculty and teaching the next generation of healers.

And so I persist, knowing the term “difficult” will likely again be added to my chart because while my expectations are low for my treatment, my aspirations for your care and your ability to help others are boundless.  I fill out the feedback forms trying to note every detail that could make an experience better – e.g. the walls not being so bare and drably painted, intake processes that could be streamlined, patient materials that might not speak to the patient, issues with care, care coordination, and care plans.  I tweet from @GilmerHealthLaw to @UCHealth openly to alert them to issues (which also resonates with many epatients who may have experienced similar issues or obstacles or been excited to see something really working).  I blog about my experiences with brutal honesty (and quite honestly some embarrassment) if only so I can hear that something, even one small thing has changed for the better or that one other patient doesn’t feel as alone.

I live for the moments when I hear from someone anonymously that my story helped someone else. Because that means that everything I have been through isn’t wasted, someone isn’t as alone or as in pain and maybe just maybe that can be enough for me when the pain for myself is too great and I am alone.

So I return again to the central questions….

If I have 16 people involved in my care, how do I feel completely alone? and How might we do better? 

The first step of which is,

How might we do something different?

Not just how might we make it so feel less alone, because as I said we live and operate in a constrained system and my romantic notions of the possibility a better world in general are likely just pipe dreams.

More, how might we do something different both individually and collectively to change the course of care for patients so that they might get better.

I will continue to bring in the articles I find interesting or have written. (You know that huge packet I give to you or leave for you).  I started bringing those because I knew my doctors weren’t listening to me but would listen to articles I brought from the BMJ or JAMA or the New York Times because they carry some cloud. But then I started bringing them because I know you won’t have time to talk to me for very long and I want you help you see the bigger picture, to hear others’ voices on their experiences to help you in treating me. I bring them all at once because I know you may never see me again.  And I will continue to bring them in part because growing up my father, an internal medicine physician, literally hoarded years and years of back issues of JAMA and NEJM and other medical journals but I never saw one thing from or by his patients and part of me wonders how the perspective of others could have changed him.

I will task myself with continuing to find new and interesting articles and research to share and discuss with you that we might be colleagues in my care – changing the antiquated power dynamic that still exists (particularly when you are the patient in the hospital gown and the doctor is standing above you).

I will task myself with communicating my needs and continuing to follow the care plans to the best of my ability.

I can’t assign you tasks though.  I can give you the articles and come to my appointments.  But I can’t ask you to read what I offer you or listen to my words.  I leave to you to find your role but I will offer this:

  • Kindness. Above all, kindness.

From the article “Kindness in health care: missing in action?”:

In Dr. Iona Heath’sBritish Medical Journal review of the book called Intelligent Kindness, she wrote:

“Anyone who has been seriously ill knows that it is the individual acts of kindness, thoughtfulness, and sensitivity on the part of healthcare staff that make it possible to cope with the panic and indignity of a failing body.

“Kindness helps healing.”

I’m not saying that you have been unkind.  I’m say that all of us have the opportunity to be kinder.

  • “Moral Courage”

In an article on The 2 Things That Rarely Happen after a Medical Mistake from NPR Shots (which I also gave you) the authors speak about the ability of doctors to have the “moral courage” to be open with their patients about mistakes. I think though that this goes beyond accountability for mistakes (large or small) and simply in acknowledging one’s humanness and the ability to be vulnerable.

  • Labeling patients as difficult

From “When You Fear Being Labeled A Difficult Patient”

As Dr. Dominick Frosch, lead author of the Health Affairs report, told The New York Times:

“Many physicians say they are already doing shared decision-making, but patients still aren’t perceiving the relationship as a partnership. People experience a different sense of self in the doctor-patient interaction. The clinical context creates a reluctance to be more assertive.”

Some doctors studied reported, in fact, that they secretly hope that their challenging patients will not return, and considered these difficult encounters to be “time-consuming as well as both personally and professionally unsatisfying.’

According to Dr. Stephen Balt, Editor-In-Chief of The Carlat Psychiatry Report:

“Doctors are people too, and it would be even more naïve to think that doctors don’t have their own reactions to (and opinions of) the patients they treat. Let’s face it: doctors simply don’t like dealing with some patients.

“But I would posit that there’s no such thing as a difficult patient.  To be sure, some patients present with difficult problems, challenging histories, poor interpersonal skills, and needs that simply can’t be met with the interventions available to the physician.

“But every patient suffers in his or her own way.  Doctors bring their own baggage to the interaction, too, in the form of strong opinions, personal biases, lack of knowledge, or – conversely – the perception that we know what’s going on, when in reality we do not.”

  • Validation

In an article on the detrimental impact of negative doctor-patient communications, “patients describe feeling hopeless and angry after invalidating consultations…” and that “Patients bring certain beliefs and expectations to their health care professional, which are molded by the culture they live in, and their previous experiences. Their expectations will undoubtedly affect the outcome, but improving communication in consultations could make a big difference to patient care.”

In other words, see the patient, hear them, understand them and respect them.

  • Never stop learning.  Learn from each other and from your books. Learn from research and from experience.  And always be open to learning from patients.
  • Bear Witness. For as Tim Lawrence reminds us, Some things in life cannot be fixed. They can only be carried.” 

Thank you.

Sincerely,

Erin

Update 5/15/16:

I sent the following to all of my providers to get a perspective from a physician as I know that patients are rarely listened to, but peers are often respected.

And in case you don’t take my word for it that things need to change, this was just in the NYT.

http://well.blogs.nytimes.com/2016/05/12/giving-new-doctors-the-tools-they-need/

(though I’d note, having been part of some of the initial Dell Medical School talks, I highly doubt they will be as innovative as discussed here.  Austin is not known for healthcare, that’s precisely why I left actually.)

Update 5/15/16: 

I received this email reply from the University of Colorado Medical Center where most of my providers are located. Note that I did return her call and email her directly before sending this message to my providers directly.

I am truly offended by this response, appalled. I feel bullied and chastised for advocating for myself. I feel like any way I try to address this will make me look crazy, and given my mental health diagnoses I’m an easy target. I feel invalidated and unheard, dismissed and condescended to, belittled and frankly just hurt.

I look forward to working through this with the providers and administration. Perhaps it will be a learning lesson for all.

 

CU response to emails 5_15_16

 

Update 5/16/16:

I have spoken to Susan West and though I was not particularly inspired by our conversation that things will change, I look forward to hearing what her efforts bring about.

I also tried to Storify the tweets from others in response to this post and the email from Susan to be found here.

Update 6/6/16:

I received a letter from the Division of Gastroenterology at the University of Colorado Health system firing me as a patient.  My response and the letter itself can be found here.

Update 6/9/16:

Two other providers from the WISH Clinic and Outpatient Psychiatry Clinic have also fired me.  I have updated the post Is this how you you will teach our future doctors? accordingly.

I also wrote a follow up post on what I considered before sending this original message.

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9 Responses to To All My Providers

  1. feliciaharveyschrock says:

    Erin– may I share this on facebook and professionally?

    Felicis

    Sent from my iPhone

    >

  2. […] Gilmer’s “To All My Providers” is a […]

  3. […] Monday after my last post I felt incredibly supported by the epatient community (and many of the providers that make up that […]

  4. […] sent a letter to all of my providers, carefully choosing my words so as not to offend and to encourage my providers to work with me and […]

  5. Wow! Somebody posted a link to your blog in one of my chronic illness online groups and you and I have had much the same experience. Feel free to follow my blog at http://PatientsRightsAdvocate.com
    I’m following yours too. Maybe we can help each other by linking to some things in each other’s stories.

    It would be very interersting to know how many patients nationwide have been discriminated against and systematically blacklisted by big healthcare corporations like these! I would bet that there are alot of these cases but that only a few talk publicly or ever file formal grievances.

    If you haven’t done so yet you should write Secretary Sylvia Burwell of Health and Human Services and file a federal Office of Civil Rights complaint. These types of incidents violate the ADA, as well as a number of other civil rights laws. If gaslighting was used at any stage of your denial of care you can also site the Protection & Advocacy Act of 1986 as well, and Federal hate crimes statutes.

    • Thank you for your comments. I’m Sorry this has happened for you as well. I know this happens to many and it’s really unconscionable. I’m glad there are other advocates speaking up in online groups. If you aren’t already following #spoonies, #chroniclife, #medx, #hcsm, #hcldr, among others and joining in their tweet chats, it’s a great place to connect with other #epatient advocates. You may also want to look back in my blog for other posts on health law and policy. My career as an attorney has been dedicated to this area of law and advocating for patients. Wishing you all the best in your advocacy efforts.

      • Are those ones you mentioned with the hashtags groups or individuals? I’m not as familiar with Tweet Chats and how that works as some of the other formats. I think I did see a page where people were posting but wasn’t sure exactly where to click to respond.

        How’s it going with your situation? Are you currently in litigation or going another route?

        My son was also reading some of your posts and found them very interesting.

        I was instrumental in setting up Georgia’s Protection and Advocacy system back when the Act first came about but back then I was mostly investigating in mental health settings. Georgia was very antiquated back then and there was alot of ground that needed breaking, but these big corporate healthcare corporations with satellite clinics are a whole other animal! It never ceases to amaze me how low they’re willing to sink.

        It would be great if we could get an amendment made to the current hate crime statutes that specifically addresses this type of abuse/neglect of patients. This definitely falls into the category of institutional bullying. That’s one of the things I’m trying to get HHS to do, as it seems for some reason that state regulators just side-step this type of abuse.

        I think as more of us go public and we organize it will be harder and harder for facilities to continue to get away with this sort of thing. They think they have us over a barrel right now because we are kind of scattered around the country fighting individually. I did find one organization working on this issue; the Coalition for Diagnostic Rights but have not yet made contact with anybody there. I did send an email though and am waiting to hear back.

  6. […] that made severe mistakes meant that they stopped talking to me (perhaps fearing a lawsuit?).  Being critical of physicians meant that I was fired, terminating my relationship with providers because they said it made our […]

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