Posts Tagged ‘doctor-patient communication’

Abandoned...like a polar bear on an ice floe

This is me.

I’ve literally been abandoned by my last remaining health care providers.

This is exactly how I feel as another boot strikes the edge of my ice floe. I float out farther into the icy waters, towards a slow and certain demise.

Each of those boots belong to a health care provider – a staff member of a hospital – even a “Patient Advocate” at a world-famous hospital in Boston. Names will follow. I will not go silently into that good night. They will be decloaked. Stay tuned.

Who put me on the floe?  I was forced there by the medical “professionals” that refuse to be proactive. They can’t be bothered to pick up a phone and call a colleague to see if they can help me or even ask, perhaps, if they know someone who might.

They can’t be bothered to do a simple internet search to find out how to treat someone with my rare and complex conditions.

(I’ll even tell them where to look…Medscape, Mayo Clinic, NCBI, Vanderbilt University, Google Scholar.)

It takes seconds.

If I do that, I will be labeled and ostracized (remember the “Seinfeld” episode where that happened to Elaine Bennis?) and my fade-out into black be hastened by their turned backs.

They forget I’m intelligent. They forget I have medical background and medical training and decades of experience advocating for myself and my mother.

[How tragically sad it is when I think about how poorly she was treated. I am being treated just like she was, so she ended her suffering. She too was shoved onto an ice floe. And suffered for 9 years despite of everything i tried to do to help get her some “care.”]

These so-called experts don’t and won’t even pay attention to any of the recent FDA approvals for treatments that could help me.

They won’t pick up the phone and reach out to specialists in the area to dee if they are interested in helping me.

They mindlessly throw out referrals to random places that I have already been (they don’t bother to read my record – to learn about ME), They tell me to “learn to meditate” or “do yoga.”

I have. I did. I am unable to do so.

Then, they insult my counselor. They tell me to talk to her – or that I need to find a new one.

Read my file. (Oh no – that would take time! Doctors are far too important and busy to read a patient’s file. “Only 5 minutes” – “only 2 questions” – “what ONE condition do I want to talk about today?”

Learn about my medical conditions. Read my file. Care about me. Please. Someone just CARE.

Don’t treat me as if don’t matter, as if I am a waste product – isn’t the first line of that all important oath that you take, “First, do no harm?”

Well, your acts and omissions ARE doing harm. Wake up. Pay attention. Realize what you are doing.

Every time your shove me further out into the icy waters, away from you so you won’t have to deal with me, you hurt me. You hurt my husband.  You hurt human beings.

As in the excellent movie, “Gattaca,” I am reduced to the status of being an “in-valid.” One that is not worth the time to help; to waste resources on; to listen to; to treat. A lesser part of society. Disposable.

Shove my floe again. Go ahead. Perhaps you will get lucky and YOU will be the one to cause me to wither and die sooner and the you will not have to be bothered with another patients like me. You can spend your time treating sniffles and GERD and Type 2 Diabetics. Tell them to meditate their problems away and be mindful to help their conditions improve.

But one day, your inattention to patients like me will catch up to you. I promise.

I intend to be on that list of those that YOU ignored and let languish on our ice floes.

Any talents and contributions I had the ability to make to the world will vanish as my floe heads farther out to the horizon – out of sight, out of mind. Good riddance.

I will expose you for your acts and omissions –  that will be my last act. That will be my legacy.

TOO harsh?  Well, that is too bad. This is how I feel.

I have been kicked out of the human race, shoved out into the cold, icy world alone to slowly die. All the boots that have shoved my ice floe farther into the icy waters – my former PCPs, my PCP’s practice, my former orthopaedic surgeon, my anesthesiologist, my former autoimmune doctor, my former cardiologist – all have turned their backs on me and returned to their warm and spacious mansions and forgotten about me. I am just an insignificant blip in the world. After all, there are 7 billion others (and counting – God help us…) Why care about just one?  Especially another one over 50. The world belongs to GenX and the Millenials. Those of us that are Boomers, well, we are just wasting the resources that should be reserved for THEM. the sooner we perish, the better.

I am disposable and useless.

At no time in my life have I felt this hopeless and alone.

I have been forced to return to scouring the web to find any information about my chronic conditions and any doctors that may be interested in seeing a 51 yr old with 4 chronic issues and multiple drug resistance genes. No one is interested. Not a single doctor in the Boston area.

You would think I live in Antarctica. No. I live in Boston. Great medical care?  Cutting edge medical care? Bullshit. Not when I actually have to explain to a physician what an :Autonomic Nervous System dysfunction is, and I watch them blink-blink-blink with wide doe-like eyes during my explanation. Are they even listening to me? Or are they just thinking about buying another Berkin bag or the color of their next Bentley.

Angry, arrogant doctors not interested in listening to a patient with tangible and complex conditions? Yes. Boston is their Mecca.  Don’t believe the hype. Listen to the patients that suffer because of their omissions and arrogance.

I am a compliant patient  – but there reaches a point at which it should be (SHOULD be) apparent these “conservative” (seems to be the latest buzz word) treatments aren’t working. I think 17 years should be good enough. No matter how many times I repeat these “conservative” treatments, costing me thousands of dollars, I get no better. In fact, I often get worse. . But that doesn’t matter. The quicker  I get out of their office – out of their sight – the doctors feel as if they can justify their actions – they have done their job. (Yes, I see you looking at the clock and glancing at your watch every few moments. Thanks for the disrespect. If you would take the time to read my file, I wouldn’t have tor repeat myself very single time I see you. If you would communicate with specialists before you refer me, I wouldn’t be wasting their time, boring them with a life story they don’t want to hear.) HOW RUDE.

Thank you, dear physicians,  for hastening the arrival of another cadaver for the next entitled overachiever to pick apart and insult in their gross anatomy classes. 

 

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To keep up-to-date on the subject in the medical field in which I have an interest, personal or professional, I subscribe to Medscape updates. I strongly encourage every ePatient or person that advocates for themselves or another should do the same, IMHO. It’s free and very worthwhile.

A shocking topic came through today and I HAVE to share it with everyone I possibly can.

Anyone that has been dismissed, treated in a less than human manner or completely ignored by a doctor they are looking to for help may second-guess their initial feeling: “Why does that doc hate me so much?”

You discuss it with your spouse, your friends, your fellow “zebras.”

Most tell you, no, doctors don’t hate their patients-s/he must have been having a bad day…or..YOU are reading too much into the interaction.

Read the Medscape article  HERE:

It is titled, “Medscape Business of Medicine Top Complaints Posted on Doc-Rating Websites,” by Shelly Reese.

Then, please read the response from a doctor to the article, a Dr. Barbara Lawrence, copied this directly from the plethora of comments, about 25% of them similar in tone (OMG – these are the people we are trusting with  our LIVES…) below:

“This reminds me of a large, complex doctor evaluation done by the Feds on Medicare patients. After evaluating multiple categories it turned out what seniors valued most highly in selecting a doctor/practice was the number of parking spaces and the waiting room appearance.

I don’t mind patients being sensitive to my bedside manner, my staff’s courtesy or follow-up phone calls. But really , I’m not in the business of customer service because I’m a medical professional. I can’t guarantee that patients will be seen on time due to the unpredictability of what comes through the door.

I could care less if the patient thinks they were correctly diagnosed or treated because we aren’t peers in internal medicine. Just because Readers Digest says being tired is a sign of lupus doesn’t mean you have it.

Patients may want to be co-partners in their care but they suffer from the extreme disadvantages of being poorly informed/misinformed, anxiety-driven, making judgments based on anecdotal information or TV ads, and no long term clinical practice experience.

That’s not to say their ideas have never been right. Sometimes they are spot on. But most often they come in with fixed foolish ideas planted by Connie Chung or, God help us, the internet.

Such “customer service” surveys should confine themselves to the patients’ area of expertise, and not the esoteric and complex art/science of medicine. experience.

That’s not to say their ideas have never been right. Sometimes they are spot on. But most often they come in with fixed foolish ideas planted by Connie Chung or, God help us, the internet.

Such “customer service” surveys should confine themselves to the patients’ area of expertise, and not the esoteric and complex art/science of medicine.”

(Emphasis added)

So, how dies THAT make you feel??

Vindicated – you are not crazy, overreacting, etc….?

Mad as hell?

Disgusted?

Do you feel sad for her patients?

Do you wonder how many of them were misdiagnosed, ignored, or treated harshly by her in some way?

I REALLY would love to hear your reactions!

My opinion:

A doctor-patient relationship should be one of mutual respect. If a doctor wants the respect and admiration of patients, treat them likewise. And for all concerned, they should stay abreast of the latest medical advances and studies in their specialty.

I wrote a lengthy reply to her nastiness , but I won’t include it here unless my readers ask. (I did say this in support of all us zebras: “It will confirm what all of us hard-to-diagnose patients have experienced- that docs with hatred towards us DO exist.

How sad.”

(Gee, I wonder how Connie Chung feels about being called out in this? Yikes.)

As my readers know, I am quite angry with what the health care system has handed me of late.

I won’t even go into the ludicrous bureaucracy that my health insurance company (local to MA…named after a large university here in Boston and the folks that sailed over here on the Mayflower…) has added to the mix.

Nor will I travel down the path of how insanely horrendous the service is at the mail-order pharmacy is (“at the corner of happy and healthy” – HA!) I am forced to use by said insurance company – so bad that I have to go through the main office of the company in Florida from now on to get service due to the numerous screw-up they have made…and how miserable they have made the lives of the wonderful staff at my PCP‘s office.

But, a ray of sunshine appeared in my inbox today – this posting from a great doctor-centric blog called Mind The Gap

The topic of this particular blog is about how doctors lose opportunities to connect with their patients – or, how doctor-patient communication fails. This blog doesn’t mince words – it calls things as they are – point out the flaws in the system – and doesn’t blame patients with their lists of questions as so many other physician-oriented blogs are apt to do.

It also reminded me of the other great posts that Mid the Gap also posts regularly. Any ePatient, advocate or activist might want to consider following this blog. The authors are well-credentialed, and echo sentiments I often express.

[Since I don’t have those two elusive initials after my name, most seem to turn a deaf ear to the 16 years of my knowledge and experience I have been blogging about for years – and about how I have been somewhat successful in getting appropriate treatment for some not-so-common-illnesses, and perhaps most important, feel believed (I am a female, after all).]

My response to the Mid the Gap posting today:

“Doctors are “missing the boat” b/c they don’t communicate with each other about their patients that they refer to each other. They refuse to share reports. The patients are left in limbo – with no info, and no way to get the info without PAYING for the report. Why can’t docs communicate about their common patients? Perhaps then they could actually help SOLVE their patients’ issues instead of keeping their patients sick, depressed and on disability. I am a “victim” of the micro-specialty craze sweeping the medical fields. I have seen more specialists in one year than I hae seen in the prior 50 yrs of my life. And have any of them communicated with each other to say, see if ANY of my symptoms are linked or related (hmmm, based on what I know as a former biotech/science person myself, I would say that autoimmune and autonomic problems are likely linked…as could be the pituitary tumor and sudden painful breast growth and horrid depression…and my Raynaud’s…and my migraines…) But none of these micro-specialists will talk to each other. Most of them refuse to send reports to my PCP – and she is the one that REFERRED ME TO THEM!!!
Talk about missed opportunities – there ya go – that is where the missed opportunites to help patients are originating. How does that oath start again…, oh yeah, “First, do no harm…”

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I wish I had the time and space to tell you how much harm these specialists have caused for me, my family and my quality of life because of their arrogance.

Thank you for pointing out that the problems with healthcare today are starting with the doctors attitudes and not with the patients – as many doctor-centric blogs do. Keep up the great work!!!!”

Interesting story.
I had a test a few days ago at a large, well-known Boston hospital.
The tech (well, this person was a bit MORE than a tech) related a story to me that made me cringe…and emphasized the need for more docs to a) realize that patients aren’t that stupid, b) that they are not making use of the any resources available to them on any e-device they may have access to to help their patients, and c) arrogance is running amok in Boston physicians, to the detriment of their patients.
The anecdote:
the person ( the “tech”), a well-trained and informed individual, was having symptoms consistent with a serious condition – Lyme disease. Since this tech is an employee at this world-famous so-called “cutting edge hospital,” the tech was able to see not just one, but THREE specialists in Lyme disease. Each one said that, no, this person did NOT have the disease b/c the famous “bullseye” pattern associated with the bite if the carrier tick of the parasite that causes Lyme wasn’t present. (I think by mow every person that has seen the TV show “House” knows the bullseye is not mandatory for a diagnosis of Lyme.) The tech was told that it couldn’t possibly be Lyme – that it must be something else. In other words, stop being a zebra, you are just a horse, you donkey.
It took a visit to doctor #4 (the doc that discovered Lyme!) for this tech to be diagnosed with Lyme.
Four doctors at one of the alleged “best hospitals in the world” to pay attention to this person. WOW.
Because of this person’s job, this person was able to obtain antibiotics to treat the condition in time, even before doc #4 finally diagnosed the condition, thus preventing the Lyme from becoming a chronic problem.
Four doctors.
Cab you say waste of money?
What if this person was NOT in the medical field and didn’t have the smarts to doña bit of proper Internet research?
What if this person just thought all docs were always right and listened to doc #1 and didn’t purse additional opinions, only to develop complications from Lyme?
What if this person tacitly permitted themselves to be treated like a horse, instead of following the hunch that they may in fact be a zebra?

How many people is this happening to every day, all over the country?

It takes literal MILLISECODS for PubMed or MedScape symptom searches (or countless other doctoresque e-diagnostic assistance programs) to be returned on an e-device. So “doctors just don’t have the time to research each patients’ symptoms ” is not a good enough excuse.

Are you a zebra being corralled with the horses? Are you being treated like an ass?

Speak up.

Don’t become an endangered species.

20130524-035450.jpg (pix by CapturedbyLori2012)

I was beyond thrilled to learn that BIDMC (Beth Israel Deaconness in Boston) now has Open Notes – through their website, Patient Site, registered patients can access not only their actual medical records, but their test results! This is exciting news – and in great contrast to the walls that the Steward Medical Group (the VC group that took over the Good Sam/Caritas System, Quincy Hospital, Goddard Hospital, and some physician practice groups) has built around their practices, making it nigh impossible and quite expensive to get ANY access to your own records, test results, etc.
My advice based on my experiences of late – obtain copies of as much of your data while you can, it IS, after all, YOURS. You have paid for it already! Most docs will give you copies of tests, etc. that specialists are likely to need. It is SO necessary to have you test results handy when you go see specialists – hospitals aren’t sharing records freely, leaving the (expensive and arduous) burden on the patient to obtain this information on their own. Not having this info when you see a specialist causes huge delays in receiving care, testing, and additional outlay of $$ for that not-so-cheap co-pay to see the specialist AGAIN once the records are obtained.
Example: my records were held back from my prior PCPs office because they don’t use an EHR that works outside of the actual building (it’s just a database, not a true EHR) and actually SEND OUT the records to a non-medical copying company to make actual paper copies of the records and then, charge the patient for these hard copies, which, are not even given to the patient!! My new PCP had to wait until I paid the $55 ransom for a “partial” copy of my prior PCPs records of my care – and that was THREE MONTHS AGO. My new PCP (who has a completely automated true EHR system in which patients automatically get copies of test results, etc) is still waiting for my records to arrive from the Kinkos -esque place my prior records were sent. Thank goodness I made it a habit to glean as many copies of test results as possible from my PCP over the years -or I would be sitting in medical limbo with my bizarre chronic illnesses waiting for these records.
I can’t emphasize how important it is to maintain physical possession of as many medical records as you can – you will never know when a specialist will see them – or when a VC Group takes over a heathcare system and start withholding info that YOU need for YOUR CARE.
So…kudos goes to BIDMC. The Partners system (MGH, Faulkner, BWH, etc.) offer a similar option within their Patient Gateway, but not all notes nor tests are included. In fact, most of the “reports” just give an “accession number” and no actual report. (Note: even though I have been to MGH providers within the past month – NONE of my prescriptions, diagnoses or med allergies are up to date.) I can’t figure out why they offer a “link” to the information, but it isn’t actually there…But, hey, I guess its better than nothing at all.

Overall, it is a true joy to see Boston’s major health care systems embracing their patients and inviting them to become participants in their own health care.

I am faced with the challenge of seeing 5 new docs in the next few months in the constant quest to identify the ever-changing symptoms I am experiencing.

This prospect of seeing new docs sends me into defensive mode. I have been dismissed, disrespected, and discarded by so many docs in my life. Looking forward to repetition of my medical history, current symptoms and medications as about as much appeal as scraping dead bugs off my windshield after a long car trip. Lots of interesting stuff is there, but to most, it’s just garbage and gook.

Michelle (of Living with Bob) has eloquently put the feelings I have about facing new docs in writing, and I am sharing this with everyone.

Here is the link

And here is her text (Michelle, you inspire me to be a better person. You offer me hope when I have none. I’m glad you are you, and I wish I could come to Oz and meet you. Maybe someday!):

“Dear Doctors,

A young patient presents at your ER/clinic/rooms, with unexplained symptoms of chest pain and fainting.

What is you first response?

I’d hope that you’d investigate.

I’d hope that you would take it seriously.

I’d hope that you’d reassure your patient that you believe them, and will do your best to help them.

But sadly, this response seems to be the exception, and not the rule.

“You’re just anxious.”

“You’re just depressed.”

“You’re too young for [insert illness of choice].”

“You just need to get out more.”

“You’re wasting our time.”

This is what far too many patients encounter.

Do you know that your response in that moment can influence that patient’s relationship with the medical system for years to come?

Do you know that your response can make or break that person’s sense of self?

Do you know we come to you because we are scared?

Do you know we come to you because we trust that you can help us?

Do you know that you can crush that trust with an uncaring word or flippant attitude?

Do you know that rare, doesn’t mean non-existent?

Do you know the tears we cry and anger we feel when we are casually and sometimes callously dismissed because you could not find the problem after some basic bloods and a quick check of our vitals?

Do you know how we second guess ourselves and avoid seeking medical care in the years to come because maybe you are right, and it is in our heads?

Do you know we now no longer trust the medical system because you, the expert, you who we imbue with hope and power, told us we were crazy or wasting their time?

Do you know many will fail to get the treatment they need because you made them feel like a hypochondriac?

Do you know many will lose jobs, relationships, lives, because they will no longer seek care for their symptoms for fear of dismissal or ridicule?

Do you know that even when we find a doctor who can put the pieces together, we are hampered by that one exchange we had with you?

Do you know that we mistrust the compassion and understanding we receive from that doctor because our trust was dashed by your indifference and disregard?

Do you know that we will spend years trying to overcome the damage you created in that one exchange?

Do you realise the power you have?

We come to you scared.

We come to you with trust.

We come to you with hope.

We want to believe.

We want to feel better.

You may not understand our condition.

You may be frustrated by a lack of clear results.

You may be overworked and tired.

But do not forget your power.

Do not forget that you promised to first do no harm.

Do not forget you are dealing with a person, not a bed number.

Do not forget that in that moment we are vulnerable.

A kind word.

Genuine concern.

A simple admission that you don’t know.

Will build trust.

Will build hope.

See us as people.

See that there are real world, long-term consequences to how you interact with those who seek your care.

You have the power to make or break a person’s entire experience with the medical system.

Remember that before you speak with your next patient and use your power well.

Michelle”

20130514-232825.jpg
How I feel on a bad day…a beached man-o-war, outta luck, abandoned and left alone to just rot.

Probably 98% of the people that read my blog would consider themselves epatients…so I just had to reblog this – the comments in response to this article are worth the read – especially since some of the comments come from real live doctors!!
http://healthworkscollective.com/katie-stensberg/28336/more-5050-chance-emergence-e-patient#comment-3756
Thanks to Katie Stensberg for initiating this discourse on Healthworks Collective.

Here is MY response to the article AND the other responders. I’m interested to hear from others about this issue – until we significantly resolve this negative ePatient attitude that doctors have, we – patients – will continue to be at the mercy of the 12 minute doctor visit, the snapping off of all conversation by yhe dictors after 18 seconds of attempted patient input (sorry, I don’t have the reference handy for that statistic). We will continue to be “the hypochondriac in Room 4” or the “migraine in Curtain 2.” Our zebra-hoof eats will continue to go ignored, and we will be misdiagnosed, mistreated and dismissed by the paternalistic structure that somehow STILL exists here in the most developed country in the work in the 21st century.

My response to the article/comments:

“Yes. But. Most (not all, but MOST) docs loathe their patients trotting in with WebMd articles and printouts from various fora under their arms. I know this first hand. From dealing with MANY doctors. I’m no dummy, either. I have a medical and legal background. I’ve been researching health issues since I was 16, and had to sneak into the medical library at my local hospital – for it was “doctors only.”

I am blessed (yea-right) with several weird, bizarre, rare hard-to-diagnose conditions. Not my fault, folks. I didn’t choose my DNA.

But for my perseverance, I would not have the care I have now – and I STILL need more.

However, it is the sprouting up of these unprofessional, care communities where lay people dole out remedies as if it was the 18th century. (Really – telling people that certain NPs are “dangerous, when in fact they are actually quite normotensive – telling people to take drugs that are clearly contraindicated for their conditions – they would know that if they were using Scholar or PubMed…but they aren’t!!!! These people are harming themselves and others!!! (And ruing the reputations of skilled advocates and researchers such as myself!)

Its no wonder doctors have given e-patients the derrigatory label of “cyberchondriacs.” Look it up! It has its own Wiki entry!!

The ONLY WAY to get ePatients to be RESPECTED is to get these people searching on the proper sites…using peer-reviewed journals…medical texts, etc. and stop using anecdotal blather from Facebook and other “support sites.”

i recently wrote a “how to” blog post about the basics if successful researching for advocacy – I wish I could reblog it all over the web !!! I would put it on billboards if I could! Things WILL not change for patients untiil they start to bring docs cogent, respected research and evidence about their conditions that they cannot refute!!!

If you’d like my blog info, I’m more than happy to share! ”

Lori
EPatient 2013