No Harm

Four years ago, in a neurology outpatient’s waiting room, somewhere in the southern hemisphere…

I’m your eighth patient today, here in this clinic.  Before that, you were doing ward rounds with your students, you’ve barely had time for lunch.  I don’t know this for fact, but I know you’ve seen a lot of patients from the slump in your shoulders, the way you don’t look up when I am too slow to follow directly behind you into your space.  You finish reading something on your computer, maybe it’s my record. You push your keyboard away, sigh and swing your gaze towards me. It rests on me for a nano second.  Then it flits to somewhere over my left ear. Your brain is busy, I can see that. Who knows what thoughts are travelling through your mind?  Not me. But I try to guess, trying to read your body language; trying to find the right way to talk to you based on the incomplete information in front of me.  My first instinct is to apologise to you, for making your day busier.  I give myself an internal faceslap. Your time is valuable, it’s true.  Mine has no monetary value.  The numbers a neurologist like you can earn are a reflection of your worth. But that thought doesn’t seem to cheer you.  You rub your temples and say:
“Exactly why is it you are seeing me!? You POTS people don’t need a team of physicians, you know.  A cardiologist should suffice.”

I’ve been waiting a long time to see you.  Hoping that seeing you is going to make a difference.  I hear you have a brilliant mind, that you might be able to help me. Waiting for this appointment has kept me going.  I know that my medical history is long. I know that the things that have been going wrong for me don’t seem to add up.  I know that I bring my burden of hope and lay it at your feet.  And I see that you don’t want it.  I wish I could have brought you in a cup of tea.  Might you have smiled if I had?  Might you have seen who I am, beneath the data on your screen?

“I am sorry,” I say, my voice barely audible.  “I have a neurological condition and I am seeing you because you are a neurologist”.

If you are taken aback by my response, you don’t show it. Your head swivels back toward your screen. “Tell me more” you intone.  So I do.  I tell you my symptoms as succinctly as I can while you scan through my notes. “hmmmm” and “yes, I see” and “ah”. The nods as we cover each autonomic oddity. You do a neurological exam.  We sit down again. When you look at me, it is as if you are seeing a puzzle. You’re analysing the information you have gathered. You are searching for the placement and order of the pieces so you can see the whole. The pieces suddenly slot into place.  Satisfied, you rock back on your chair. Your next sentence is certain and clipped.

“You don’t have POTS”.

Do I suppose, at that moment, that a cardiologist might not suffice after all? I look at you, wondering what is coming next.  But I am not surprised.  I never really felt like POTS was the whole story, it just didn’t fully explain everything. So I wait for your view of things.

“You have Pandysautonomia.  Pan means ‘all’ and Dysautonomia, well you know what that means, a dysfunction of your autonomic nervous system.  It can’t be auto-immune, because your blood tests are normal*. It appears to be progressive. You’ll be happy to know that breathing is usually the last thing to be affected.  You’ll continue to decline, and then, eventually…”   You don’t say the next part.  You tell me to go an do the things with my family that I need to do while I am still able. Then, you clear your throat, raise your eyebrows and meet my eyes, properly. You push your chair backwards and explain that you have no need to see me again, you’ll send a letter to my General Physician.

You stand, and as I look up, you ask,
“-any questions?”  
and I see that I am dismissed. My inner roar of frustration is silenced, replaced with a whimper as I survey the decline and fall of my future. The small feral creatures of uncertainty that populate my mind have grown into monsters in a few of your short sentences.  I stand, thank you for your time and leave your rooms.

I sink into one of the waiting room chairs.  I am shaking from the effort of holding myself upright throughout the appointment. I’m devastated. I thought you might tell me that all I needed to do was x or y.  I was even prepared to try z. The stress of the interaction has sent adrenalin coursing through my blood stream.  I feel the usual battery of autonomic warning signs.  I wait it all out, half reclined, embarassed, listening to the hammering of my pulse between breaths. I am suspended there, in the waiting room I am desperate to escape from. I think about how you must not know how terrifying you are.  How scary your words. How easily you could have reassured me.

You are already seeing your next patient. The waiting room is so full of people.  I wonder how many of them are for you.  I wonder when you will get your cup of tea.  When you will get to escape from the burdens that crowd your clinic rooms. I wonder what you are thinking as you face that ninth patient.  And I wonder if you really love what you do anymore.

So yes, I am sorry.  I’m sorry you are busy. That the Medical Profession isn’t what it used to be. I’m sorry to be one of the many who demand yet another slice of your mental gifts, your time, your attention.  I’m sorry that you have lost, or maybe never had, the ability to connect with the person sitting in that chair across from you.  Your intellect is a beautiful gift. A valuable gift. Your education and years of training have positioned you to make a living from that intellect.  And just as any person (making a living in a service role) needs to have interpersonal skills; so do you.  If a McDonald’s cashier can afford me a smile on minimum wage, I kind of think you should be able to manage one. I’m sorry to be the one to tell you that, because I don’t think anyone else ever has, or maybe, no one since Med School. I wish I had been strong enough to tell you when I was in your rooms.

Take a break, doctor. Make some changes to your schedule. Fix the system, if it is the system that traps you in such misery. Take a look at the person behind the records, and the person in your mirror.  Both are beautiful, complex, intricate human beings. Try a small smile, a minute’s reprieve from your analysis and timeframes.  And if what ails you is exhaustion, it might be good to remember that you are not Atlas.  You shouldn’t need to shoulder the planet alone. A holiday might make all the difference, you could take one.

Remember that the words you tell your patients are always significant to them. But the things you tell them with your body language speak louder than anything you say in words. And if it all carries on this way, you are not only hurting your patients with your brusque and bullish manner, you are denying yourself one of the greatest joys of medicine. That magical interplay between doctor and patient, when your skills and their need combine to create a job well done.

It’s great to have a masterful intellect. But, did you forget?

First, do no harm.

*general auto-immune screening won’t necessarily show the antibodies implicated in autonomic dysfunction.

Future doctor_pateient(1)

__________________________________________________________

It’s a long time since that appointment. I write about it now, because I spent four years believing, yet fighting, what I was told. That I was on a progressive trajectory, that I would decline towards the ultimate end, that I should do what I want to with my family while I still can.  That is a pretty harmful idea to live with. Or a helpful one, depending on your perspective.  But it is certainly painful.

I’ve since had a much, much better appointment with the same neuro. I don’t hold a grudge anymore about that first appointment, but I think it is illustrative of the difficulties faced by chronically ill patients being seen through the hospital outpatient system. And also of the difficulties facing our chronically stressed doctors. Our bodies may be sick, but their system is also sick. My subsequent search for more answers to all my questions, eventually led me to an immunologist.  My response to immuno-suppression indicates that my problem is indeed auto-immune, and absolutely able to be treated with immune modulation therapy.  I don’t expect my neurologist to have known about auto-immune autonomic antibodies.  But I did expect him to be compassionate and want to help.  Perhaps to do some research with that clever brain of his. Or phone a friend!

What I am saying is that I would like to see a future where doctors understand that they have a wonderful opportunity to limit the harm their patient’s endure, simply by being nice.  I believe that Hippocrates was not only talking about physical harm in his oath “First, do no harm”.  I’d like to see a future where kind doctors are recognised and rewarded for the extra efforts they make with their patient interactions.  And where hospital systems improve the working conditions of all their health workers, including doctors and specialists.  And maybe, one where girls like me; the apologising kind, find the strength to say their piece when they should.

Have you had an interaction with a specialist like the one I talk about, above?  I’d love to hear about it.
Do you think something can be done about the pressures facing doctors in our modern medical systems?

10 thoughts on “No Harm”

  1. I kind of had a simIlar experience, well two actually.

    The first was with a rheumatologist who explained my eventual demise in great detail while staring at his papers. I fired him and have never seen a rheumatologist again.

    The second was with a neurologist. I went to see him to explore if the cerebral aneurysm my son had died from possibly had a familial aspect. He told me I must have tricked my husband into marrying me because who in their right mind would marry someone with such a debilitating illness. I still feel angry thinking about it now but at the time I was a 25 year old grieving mother pregnant with my third child and I had no balls whatsoever. I contribute that consult to the worst flare on record and my eventual severe post natal depression.

    Both did harm and both should not be in practise.

    Imagine if you had accepted what your neuro said at face value. Imagine if you gave up at the moment. Imagine if you didn’t research and fight. IMAGINE! Tbh it blows my mind. Your determination is inspiring. X

    1. It’s so concerning isn’t it? So many patients report such devastating appointments. I think we really are required to start asking the questions about how it has become this way in some doctor’s offices. Something is rotten in the state of Medicine.

  2. As a “patient actor” for the College of Surgeons, I can say with certainty that surgeons are getting better. I have been doing this for about 7 years and in that time I have seen a steady rise in the quality of the communication interactions that the surgeons have. There is more focus on communication and more discussion about how communication effects the patients. Often discussing things with the surgeons and consultants in the break time, the ones that have worked overseas often comment on how docile New Zealand patients are, they never question and often take what you say as Gospel. I even had a story told where one surgeon very tired and gone around to see a patient post-op from a gall bladder removal. Told the patient and his wife in great detail about how well the surgery had gone and then said he was gone examine the wound site. The patient and wife had nodded along throughout the 5 minutes discussion never saying anything much. He lifted the gown of the patient to find no surgery marks. Oooops wrong patient. Yet the patient and the wife never even said anything, the mentality of “you are the doctor you must be right” taken to a new level. I think the system needs to change from both sides. As patients we need to stand up and say “LISTEN TO ME!” and as Doctors they need to listen and communicate better. All of course IMHO

    1. I do love to hear stories from the grass roots. It’s awesome to hear that the surgeons and consultants have opportunities to work in an active simulation environment with experts like you. I worry about the machinations of the system once they are out and with patients in a day to day setting. The stress levels must be high. I have had so much feedback about this post over on the patient forums, it is a sadly common experience for sick people to have to deal with overwrought doctors with too much load. I hope it continues to improve Claire, as all those doctors head out there with a strong idea of what quality communication looks and sounds like! You are right about the kiwi reserve. I think there has been a culture of the doctor knowing all for so long. Maybe it’s a generational thing too. It is terribly intimidating when you are sick and in bed and a powerful person walks into your cubicle, talking faster than you can process, explaining things that are hard to take in (for a multitude of reasons). Some doctors are so expert at it, others try and still others don’t give a rats. :-/

  3. I have stories on both ends of the spectrum. I have a PCP who fights for every breath I take. Spent numerous hours away from her family to research and come up with the possibility of POTS or that family when all of the specialists just shrugged and moved me on. I am forever grateful for the amazing woman who is my primary physician. She is also the person who stops in the middle of her busy day to give me a hug when I have bad news. SHE is a doctor. But I also went to see the cardiologist that my PCP first sent me to with her notes about my symptoms and questioning POTS. This “dr.” was clearly annoyed that some lowly patient and PCP might be making suggestions about a possible diagnosis after he was unable to after seeing me for over a YEAR! He shouted at me, “Stand Up!” I did. “Now, Sit Down!” I did. “Stand Up again!” I did. then, “you don’t have POTS!” “Your heart is fine”and he started leaving the room. I spoke up and in tears said “but wait! Then why can’t I breath, why do I faint? What about all my symptoms?” This “specialist”, this Lord of the medical community, actually looked at me and said “How the hell do I know why you can’t breath!” Now, I can honestly tell you if I had been 20, 30 even 40 when this happened, I would have left the office in tears. But I wasn’t, I was 50 so I said “Then you had better give me every dime I’ve paid you back because you were PAID to figure out why I can;t breath and all the rest of it. So if you don’t know and clearly you don’t care, then you are guilty as hell of FRAUD!” I walked out. I didn’t get a refund, but then again, come to think of it, I never paid the bill! I also never saw him again. The finale is that when I replaced him with a new cardiologist, the new Dr. looked at my record and said “You used to see Dr. Snotnose? (not his real name, lol) I nodded. He said “he used to be my partner.” There was a long pause, then he said “he’s a real bully isn’t he?” We both laughed. He is still my cardiologist. Thanks Rachel for bringing up such an important topic.

    1. It’s such a difficult and complex dynamic. So many factors. I am really sorry to hear of that awful appointment you had with your first cardiologist, Ellen. What an awful person. Why do they keep practising when they are clearly over it? I don’t understand! Glad you found a better one 🙂

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