Shock

It’s time for more in the Speaking Up series.  In doctor-patient interactions, what types of things hinder patients from speaking up?

Shock – There’s a fair amount of shock involved with hearing the unexpected from a doctor.  If I go to see my physician about symptoms, I’m expecting to hear what I need to do to recover.  I’m not expecting a life-changing diagnosis.

The doctor is dealing with just one more case of a disease that he’s seen in many other patients.  He knows what the disease is, what the patient’s prognosis is, and has a good idea of the best way to approach treatment.  Why don’t patients speak up or ask for this information?  One reason:  we might be trying to cope with what we’ve just heard.

It’s a bit like being slugged in the stomach.  Initially, all you can do is try to catch your breath.  While the patient is trying to figure out what’s going on, the doctor walks out the door as he hands the patient a prescription with instructions to return for follow-up in two months.  By the time the patient has recovered enough to ask questions, the opportunity is gone.

Other times the doctor might overwhelm the patient with information before we’re ready to hear it.  If A, then BThis disease gets this treatment.  If B doesn’t work, we’ll try C or D.  The patient, however, is hearing words that aren’t even in his vocabulary.  If A?  What’s A?  I can’t have A!  Don’t talk about B & C & D when I’m stuck on A!

Over at Bedside Manner, there’s a post about The Balance of Power Between Patient and Doctor:

“Some patients like to receive a lot of information about their condition and prefer to be a leader or equal partner in making decisions about their health. Others would rather just have the doctor sift through the information and tell them what to do.”

The article goes on to suggest that instead of ignoring this situation, doctors should ask patients how much they want to know.

No doctor has ever asked me how much I want to know.  Even if someone did ask, I don’t know how I’d respond initially.  For me, there was too much shock in the beginning for me to have any questions.  It wasn’t until I was on my way out the door that I realized I had no idea what the diagnosis meant, how long I needed to take the prescription, or when I’d feel better.

I would have found it very helpful to hear, “This is a lot to take in right now, and you’ll probably have some questions.  Write them down and we’ll discuss them at your next appointment.”  Another thing that I would have found helpful:  resources.  A short brochure with basic information would have been nice, including a list of reliable websites and good books on the subject.  People who don’t like to read could be pointed to specific YouTube links for appropriate information.

When I was diagnosed, I walked out the door with way more questions than information.

  • What do I have?
  • Are you sure?
  • What is it?
  • Any chance there’s a mistake?
  • Why did this happen to me?
  • What are my treatment options?
  • What criteria do you use in choosing one treatment over another?
  • What if I decide against treatment?
  • Where can I learn more about this disease?
  • When will I feel better?
  • Do you know others who are dealing with this that I could talk to?
  • How often will I need to return for follow-up?
  • Is there anything else I can do in addition to swallowing all these pills?
  • Any idea how much I should budget for treatment?…

I, obviously, am in the “give me all the details” camp, but the shock of receiving a diagnosis kept me from speaking up.

Do you think that doctors should ask patients how much information they want?
Would you want your doctor to ask?

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Other posts in this series:

  • Speak Up  
  • Hindrances 
  • More on Speaking Up 
  •  

    more on speaking up

    Thinking about doctor-patient conversations sometimes reminds me of that old Simon & Garfunkel song:

    …I’ve come to talk with you again…

    …I walked alone…

    …people talking without speaking
    people hearing without listening…

    If doctors need to listen to patients to figure out what’s going on, patients need to tell doctors what’s going on.  Why is that so hard sometimes?  It’s hard to speak up when you feel rushed, but have doctors ever done other things that made it harder for me to talk to them?

    Sometimes Doctors Blame the Patient

    Years ago I got a terrible abdominal pain.  I could only explain that it felt like the stitch you get in your side sometimes when running.  Since I hadn’t been running, and it continued for days, I finally called my family doctor.  Unfortunately, she didn’t have any openings in her schedule so one of the other docs in the practice saw me.  Another symptom – very weird, and not one I exactly wanted to announce – was that the pain got worse when I used the bathroom.  The doctor learned this only based on questions that he asked (I certainly didn’t volunteer the information), then this obnoxious person told me that perhaps it hurt because I expected it to hurt!  I didn’t say anything else; I was done talking to the jerk who seemed to simultaneously dismiss a fairly painful/embarrassing problem, and blame me for my symptoms.  I’d been using the bathroom just fine for 24 years; why on earth would I suddenly start thinking it would hurt?   My expectation was that I would not live in pain.  When that doctor then asked if I’d be comfortable with him doing a pelvic exam, I told him Not.A.Chance.  DrJerk left and my doctor made time to see me.  She discovered a grapefruit-sized ovarian cyst.

    Experiences like this color future interactions with other doctors.  Don’t say anything that might be interpreted as something for which the patient could be blamed.  When a doctor wrongly suggests,  “It’s your fault that you feel this way,” that’s a sure-fire way to guarantee that I’ll clam up.

    …No one dared disturb the sound of silence…

    I can only think of one other time that I was blamed for a medical situation.  Tramadol was prescribed.  In the first place, I didn’t want to mask symptoms with pain killer; I wanted to solve the problem so that the pain killer wouldn’t be needed.  However, I was desperate so agreed to take the tramadol.  The instructions I was given said take 100mg up to four times a day.  Within minutes of taking my first (and only) dose, I felt horrible:  the room started spinning, my speech was slurred, and I was extremely nauseated.  Then I began vomiting.  It was so awful that I couldn’t eat anything for the next three days.

    The prescriber’s response was to blame me, “It looks like you’re medication sensitive.”   By that time I’d done a little research – including a long conversation with my PCP.  This was not a case of being overly sensitive to the medication.  The prescriber screwed up and told me to overdose.  This particular medicine, “should be started at 25 mg/day qAM and titrated in 25 mg increments as separate doses every 3 days to reach 100 mg/day (25 mg q.i.d.).  Thereafter the total daily dose may be increased by 50 mg as tolerated every 3 days to reach 200 mg/day.” 

    Although it would be easy to go on and on in a rant against that particular prescriber, I’ll refrain.  The point is that he blamed me.  He’d made up his mind and was stuck on a specific treatment track without being open to my input.  In response, I was no longer willing to talk to him.  Sure, I showed up for follow-up appointments, but I didn’t volunteer any information that he didn’t specifically ask for.  I was done talking to him, and hated having to see someone like him.

    …”Fools,” said I, “You do not know.  Silence like a cancer grows.”…

    What’s a Patient to Do?

    If we can’t talk to our doctors, they can’t help us.  At least not effectively.  Like a harmful cancer, silence between doctor and patient needs to be eradicated.

    In the spirit of not pointing the finger at others, the most obvious solution to the blame game is to avoid being at fault.  For instance, if I don’t want to be blamed for being non-compliant, then I shouldn’t be non-compliant.

    Sometimes faultlessness isn’t sufficient.  As my two examples show, sometimes the patient gets blamed anyway.  I think there are two possible solutions when this happens.  The first is to address it directly.  Without being overly confrontational, it’s possible to say that it seems like you’re being blamed for something unjustly and would like to know why and if there’s any way to fix the problem.  It might be a simple misunderstanding; you’ll come out of it with a better relationship with your doctor, knowing that you can speak up and will be heard.  The other option is to find a different doctor who won’t place blame when it’s undeserved.  I’m not a big fan of doctor-shopping, but on rare occasions it might be needed.

    There is one other situation, though.  Sometimes we might be blamed for problems in our health because we are to blame.  What a concept!  Personal responsibility.  Instead of getting offended and refusing to talk to the doctor, hard as it might be, wouldn’t it be better in the long run to admit it when we screw up and ask for help fixing the problem?

    That seems pretty reasonable:

    • Do your best to not be at fault
    • If you are at fault, admit it and move forward
    • If you’re unjustly blamed, address it

    Let’s respectfully speak up instead of letting blame create even more silence.

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    Post Script – This is part three in a series of (at least) four posts on doctor-patient communication

    1. Speak Up  
    2. Hindrances 
    3. More on Speaking Up  – this post
    4. Shock

    Hinderance #1

    Pondering if there’s anything that makes it easier or harder to speak up at the doctor’s office, I realize that there are definitely things that make it harder.  First, I find it hard to speak up and say what’s on my mind when I feel rushed.  This seems pretty obvious, but I wondered why sometimes I feel rushed and sometimes I don’t.  Is it me?  Is it the doctor?  Both?

    Context is everything.  When a doctor asks me, “Do you have any questions?” how it’s asked matters.  I might have a question, but feel like the doctor was too rushed to want to hear it.  If the doctor is standing at the door, reaching for the knob, I feel like it was a rhetorical question and the doctor can’t wait to leave.  On the other hand, if the doctor is sitting down and looking at me, I feel like it’s okay to ask for clarification because the doctor is willing to take an extra minute.  Sitting isn’t a requirement, though.  My PCP often stands leaning against the counter, rather than sitting, and the same message is conveyed.  He’s there, not rushing off elsewhere. 

    I’ve noticed something interesting about how exam rooms are set up, too.  Most rooms have the usual contents; it’s how they’re arranged that makes a difference.  Some rooms are set up so that the doctor can rush through the door, immediately drop the patient’s chart on the counter, talk at the patient who’s perched on a cold exam table, then flee again without ever seeming to be in the room.  It’s much better when the furniture arrangement requires doctors to move away from the doorway in order to see patients.  When the exam room is set up so that it seems the doctor is hovering near the door, anxious to make an escape, it’s hard to speak up.

    Clocks make a difference, too.  Some exam rooms have a loud tick-tick-tick filling the silence, a constant reminder of time marching on.  If it seems like the doctor is watching the clock, I feel rushed.  I’ve been in exam rooms where it seemed that the clock was the focal point.  Other exam rooms have no clock at all.  One might think that the lack of a clock keeps patients from realizing how long it takes the doctor to enter their room (“I’ve been waiting twelve minutes!”), but there’s another aspect to that idea.  Once I asked the nurse at my PCP’s office why there wasn’t a clock.  I had a lengthy list of questions – basically asking for an interpretation of what a different doctor had diagnosed but not explained – and wanted to make sure I stayed within the time frame scheduled for my appointment (that’s hard to do when you don’t have any concept of what time it is).  The nurse replied that the staff had tried to get the doctor to put clocks in all his exam rooms, but he refuses because he doesn’t want patients to feel rushed.

    I know that doctors complain about the time constraints placed on them by insurance companies.  From what I’ve heard, their frustration is justified.  Taking it out on patients, though, isn’t.  (fwiw, I think I know a solution, but nobody’s asked for my opinion).  The particular events that cause scheduling conflicts vary from one person to the next, but everyone has more things to do than they have time to do them in.  This phenomenon isn’t unique to doctors.  Some people can handle it gracefully, as opposed to those who inflict their stress on everyone around them.

    For example, I once took my baby to a doctor after being told we’d be squeezed in around 1.  It was 5:30 before we were taken to an exam room.  NB: this is not the “handle it gracefully” example.  The doctor came flying in, white coat flapping behind him, as he dictated notes about a previous patient into his hand-held recorder.  He introduced himself, glanced at the chart, asked a couple questions, and was gone again like a whirlwind.  A minute or so later he was back, asked a couple more questions, did a quick exam, and departed once again while telling his recorder what he’d discovered.  A third time he appeared, wrapped up the appointment, and hustled me out of there.  If it had been an appointment for me, I never would have tolerated that treatment, but my baby was in pain and needed help.  We never went back there; I was fortunate enough to find a doctor who stays in the room long enough to talk and doesn’t rush me out the door.

    Another appointment, different doctor. I had a 3:30 appointment, but at 4:45 was still sitting in the waiting room (very unusual for this doctor).  Eventually the nurse took me to a room, apologizing profusely for being so behind-schedule.  She took all my vitals, wrote whatever hieroglyphics it is that tells the doctor why I’m there, and apologized once again for the delay.  That late in the day I expected the doctor to be in a hurry, but he came in with my chart, sat down like he had all the time in the world, and calmly gave me his undivided attention.  He was behind schedule, but not rushed.

    I’ll go out on a limb here and guess that I’m not the only one who thinks that feeling rushed makes it hard for patients to talk to their doctors.

    So What?

    When it comes right down to it, the above are just observations.  There’s nothing that I, as a patient, can really do anything about.  Truth be told, I’m not a big fan of pointing out problems without proposing some sort of solution, so the question is this:  As a patient, is there anything I can do to minimize the chances of feeling rushed?

    The common tips that can be read just about anywhere say to always schedule either the first appointment of the day or the first appointment after lunch.  The doctor isn’t usually running late for the first appointment of the day.  While that might usually be true, it’s not always the case.  It’s also not very practical.  It’s not possible for everyone to be first. 

    As a patient, I have no control over whether or not the doctor sees me at my appointed time.  Retraction – if I’m running late and not there, then I won’t be seen.  Actually, I know that I won’t be seen at 9:00 if I arrive at 8:58.  The receptionist needs time to sign me in and check over the paperwork.  Rule number one, be punctual and allow enough time to check in.

    Another thing I can do is arrange my schedule to accommodate the unexpected.  Regardless of how rushed or relaxed the doctor is, if I have another appointment to keep, I feel rushed independent of how the doctor’s schedule is running.  I used to schedule a twenty-minute appointment at 10:00, allow an extra ten minutes, a little travel time, and schedule an appointment elsewhere at 11:00.  When I did this, the entire time was spent anxiously hoping that I’d get out of there on time.  Things feel much less rushed when I schedule one appointment for 10:30, plan a break (sandwiches in the park, or perhaps order take-out somewhere and surprise my husband at his office with a bite to eat), then have my second appointment right after lunch.  Building in extra time to allow for others to be behind-schedule is a great way to minimize that rushed feeling.

    Another thing I’ve discovered is that I can choose how I respond to stressful situations.  A perfect non-medical example occurred recently when I got stuck behind a car whose driver erroneously believed the speed limit to be 45.  This happens frequently on that particular road, and it drives me crazy.  First, because I’d like to drive about ten mph faster so I’m travelling the speed limit (or, maybe even a tiny bit more); second because I drive a large vehicle, and it’s big enough that nobody can see around me to know that it’s not my fault!  It’s the tiny car ahead of me causing the backup.  But I sighed and travelled at the pace set by the guy ahead of me.  Yes, I had an appointment, but honking at the guy or riding his bumper would only raise my blood pressure, not his speed.  The pickup behind me didn’t see it that way.  He zoomed up close and tailgated me.  I could see him pounding on his steering wheel, gesturing, and yelling right up until the end of the no-passing zone; he zipped out into the oncoming lane – and discovered that he had two people to pass, not one.  He made it.  Barely.  We travelled on up the road another ten miles, and when we reached the traffic light, he was the first car in the right lane; I was the second car in the left lane.  All that rushing only gained him a few extra feet.  He sat there at the red light, fuming, pounding more on his steering wheel, glaring at the slow little car beside him.  Another mile up the road, Mr. Inahurry turned right and I turned left.  At.the.same.time.  He gained nothing by getting upset about the trip taking longer than he’d planned.

    Now, I realize that when I point my finger at someone else, there are many more fingers pointing back at me.  I know about the guy’s reaction not just from watching him, but because I’ve done it, too.  I grew up watching someone stress over things that weren’t worth it.  And I know that it’s possible to change.  Relax and enjoy the ride.  Choose to act not react.  It took me years to learn not to stress out over things that are out of my control.  This definitely helps with traffic delays, but it helps at the doctor’s office, too.   I can choose how I respond to stressful situations; I’m there for help, and it takes however long it takes.  I try to focus on being thankful that I could get an appointment, rather than on what a disruption it is to my personal schedule.

    I can think of other things that doctors have done to make it easier/harder to talk to them, so this will be part of a series.

    Do you have other tips on how to feel less rushed when you see your doctor?