Have you considered?

Three doctors have now fired me following the message I sent to all my providers.  I honestly am not completely surprised though I am deeply disappointed. I think that we can do better than this in healthcare.  I think patients deserve better.

However, I’m not sure that the doctors I’ve written understand how I came to the decision to write them all as I have been asked “have you considered…?” on more than one occasion. And the answer each time I’ve been asked is, yes. Yes I did consider a number of things before pressing send.

My actions have been questioned and here are my responses:

Have you considered…

…that doctors don’t have time to read or answer long emails

and don’t get paid for it?

Yes. I do know that doctors have a lot of things on their plate so it is a lot to ask that a provider read such a long email. I cannot pretend to know all of the pressures on their time.  I know they say they aren’t paid for reading emails or charting in general that there is too much extra paper work involved.  I agree that there is too much paperwork overall (read here) but I don’t buy that they aren’t paid enough or don’t have the time to read emails from their patients. Their compensation reflects the work that they are paid to do as any other job compensates employees (we can fight about the adequacy of Medicare and Medicaid reimbursement rates but then we’d have to get into how minimum wage and disability are far less fair).

Doctors knew this was part of the job and accepted it.  Doctors are compensated handsomely (well over 3.5% of the median income) and even with school debt, seem to fair well (if you want to talk about the medical school debt debate see what I wrote here).  I think they can take the time to read a long email. I doubt it’s the case that a patient like me writes long emails very often and if they do, there is probably something really important in that email that could improve care for that patient.

I know I’m a sesquipedalian (long winded). And I considered that while writing them.  I put in anecdotes to humanize the message.  I refer to other articles because I want to back up what I am saying and share the wisdom of others.  And I try to  offer solutions like “how might we..?” – an idea to move forward.  I try not to blame or condemn though I can be fiercely critical and I like to be detailed (blame the lawyer in me).

So yes. I did consider that doctor’s don’t have time to read and answer long emails and don’t get paid for it.  Granted, dealing with my medical issues takes up all my time too and I don’t get paid for it (in fact I pay for it financially and emotionally).  I thought that it was worth reaching out because something wasn’t working.  My doctors are certainly getting paid for something, yet I wasn’t seeing the benefit in improved health.

…that this is part of your Borderline Personality Disorder?

Regardless of my intentions, regardless of whether or not I am right, ultimately I know that my actions are blamed on my diagnosis of borderline personality disorder (BPD).  BPD is the most stigmatized mental health disorder, poorly understood by society and the medical profession and even within the mental health profession.  Those with BPD are labeled as “difficult” and “manipulative,” their motives often attributed to their psychopathology.  So when I write a long letter and I press send, my doctors don’t see a woman with a law degree who has been immersed in healthcare her entire life, a patient and a professional who has worked with government agencies, larger corporations, patients, doctors, nonprofits; who has spoken around the country or written a small blog.  Instead they see a woman who is “being borderline.” They think I am being impulsive and demanding which somehow gives them the right to be less empathetic and dismiss my valid concerns. In fact, they can dismiss me all together.

So, yes. I did consider that this could be part of my BPD and that is why I wrote, “I ask you to set aside any bias to pathologize my assertiveness and the following communications.”  And yet I still was yelled at by my podiatrist for sending an “inappropriate” message.

…that this is wasn’t the best way to contact your providers?

Emailing this to my providers all at once was really a last ditch effort to try to fix the problems that seemed to be adding up.  In the last year, I have dedicated myself toward my healthcare in the hope that I could finally move forward from many things that have been holding me back (e.g. pain from cervicogenic headaches and swollen joints from rheumatoid arthritis).  But no matter how many providers I saw, tests ran on me, procedures I submitted to, things weren’t getting better.  And worse still, all these tests and procedures weren’t being communicated back to the providers.  There wasn’t a way to do so without me often physically printing the results out and bringing them to appointments or logging in to multiple portals and cutting and pasting into other portals.  It’s beyond inefficient.

I know that portals, until we have interoperability, are not set up for the kind of communication that is needed in my case – between providers within the same system and in separate systems.  And Sue West of the University of Colorado Health system agreed. Writing me:

It is not efficient or effective for a conversation to occur among your 16 providers as a means of managing your care.

So what is an efficient and effective means for conversation?  That was the entire point of my original message – we need to find a more efficient and effective way to provide care and coordinate care between multiple providers and systems.

Email was never my first means of communicating with the clinics.  I filled out every survey they sent me electronically.  I tweeted @uchealth with concerns.  When things were starting to reach a fever pitch I looked for the hospital’s patient advocate, tried to contact them and did not get through.  When that didn’t work, I sent my concerns to @uchealth via direct message (thank you to twitter for removing the character limit).  And most importanly, I used the portal.

Note, the portal my podiatrist uses does not accept special characters like ” and &.  And the portal my rheumatologist uses doesn’t work well on my phone (a problem when my computer is in repairs).  The portal at the University of Colorado failed to update with the providers I saw so there was no way to contact them in the portal at all (including the GI).   My dentist who was in the original email (yes he’s part of my care team) doesn’t have a portal at all.

I have tried to broach this subject with them in person too, but just like with emails – they don’t have time.  That, or they tell me “that’s not my job. I deal with only X body part.”  It is their job though, it is their job to care for me as a whole person and not as one body part.  It is their job because last I heard – the head bone is connected to the neck bone and all the way down to the toes.  In other words, it’s all connected and they should care.

So yes, I did consider that using email was not the best way to communicate with my doctors, but this was the best option to get everyone on the same page until we figure out better electronic health record technologies.  I was making due in a very limited system.

…doing it their way?

As I said, over the last year, I have dedicated myself to my health.  I have had huge needles stuck into my spine without sedation.  I have sat for xrays and CT scans and MRIs.  I have let them put their hands all over and inside of me.  I have had let them draw blood and inject me with too many things.  I have let them run electrical currents through my legs and arms.  I have submitted to whatever I’ve been asked to submit to.  I’ve shown up to all of my appointments and I’ve taken all my medication.  I have used the portal and I have called and I have been patient with their limitations.  I have done it their way.

The thing is this is a partnership in care. This isn’t about patients submitting to doctors.  Patients have a voice here too.  Why aren’t we asking the doctors to try it the patients’ way?  Why is it only ever that the patient has to do what they’re told, almost infantilized in this power dynamic that allows doctors to remain in control of the relationship?

I was asking the doctors to consider a different way after I had tried theirs yet they couldn’t have enough respect for me to try.  And because they didn’t have the respect for me, I had to assert my rights.  I had to assert my right under HIPAA to request communications via email and provide the exact citations (45 CFR 164.524) and guidance from HHS.gov (because though in my record I say that I was a lawyer who specialized in HIPAA, they wouldn’t have reason to take my word for it). I’ve had to fight to have that one right respected with my providers and after multiple attempts to request communication via email and reminding them of the regulations, I received letters firing me.

Yes. I did consider doing it their way.  In fact I did it there way.  This time I needed to assert myself, ask to do things a different way (not even necessarily my way).

…that doctors sacrifice a lot for patient care?

If my doctors ever asked me about my past (which is related to every part of my care, especially my mental health), they would know that I grew up the daughter of a doctor and a pharmacist.  What they wouldn’t know is how much I saw my parents sacrifice for patient care and what that did to our family.

An internal medicine doctor, my father brought home stacks upon stacks upon stacks of charts every night to dictate.  He’d have his dictaphone out and be noting the charts one by one while we did homework.  There weren’t hospitalists in those days so doctors still did rounds every day and on weekends.  I spent many a weekend in the hospital at the nurses station or doctors lounge waiting for my father to finish his rounds and some weekends in the basement of the hospital while my father read EKGs.  There weren’t portals then nor cell phones and the phone would ring throughout the house the nights my father was on call.  I clearly remember having family time constantly intruded upon by patients.  Even in the grocery store, we’d stand quietly while my father talked to a patient who came up to him.

As a daughter I saw the sacrifice, which at some level became a sacrifice for my entire family but mostly became a sacrifice of my father’s sanity.  Not just a sacrifice of time and energy, the sacrifice came in dealing with the aftermath of the late night phone calls when a phone would be thrown or being yelled at when we weren’t quiet enough while my father was working.  I wrote in a journal at the age of 14 about my father being on the phone with a patient needing it “totally silent” and when I was too loud “he grabbed me by the neck tightly” choking and then pushing me away.

Every time I interact with a doctor, I keep in mind how taxing it can be on them.  I think about how if it’s too taxing on them, they’ll take it home and take it out on their children or loved ones.  Every single time I write an email to a doctor or send a message through a portal or make a call (I won’t make calls after hours) or even asking too many questions in an office, I think of those moments at home where my family sacrificed and hope that my doctors families won’t have to suffer for my actions.

Yes. I did consider that doctors sacrifice a lot for their patients.  I far too well how much is sacrificed.

But what did they consider? 

I considered many things before pushing send and before pushing post.  I didn’t do it because of my BPD and I didn’t do it to be difficult or demanding.   I did it because my care was not working and I am struggling.  I did it because there wasn’t a better way in that moment but know there can be a better way if we work together.

Did my providers consider that instead of being automatically defensive, they could be open?  Did my providers consider how refusing to care for me will affect my health going forward and my trust in providers in general? Did my providers consider that maybe instead of being crazy, I might just be right?  Did my providers consider the effort that I’ve put in to care, what I’ve sacrificed, what I’ve given to them?  Did my providers consider that I do care about them and their lives and their families?

I would honestly like to know what they considered before responding to my message.

In the end regardless of who considered what:

We should all consider each other as human beings, and we should respect each other. ~ Malala Yousafzai

____________________________

Update 6/9/16: I changed Two providers to Three providers in the first line upon receiving a letter that from another doctor firing me as a patient.

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