5 Lessons Learned on Being A Patient

Last summer, I was enjoying a relatively smooth second pregnancy despite my “advanced maternal age.”  It was a warm, sunny Sunday afternoon, closing a (miraculous) full weekend off of clinical shifts.  I lay down to take a little nap; my then-two-year-old daughter climbed into bed next to me. Suddenly – life changed.   I felt a gush of fluid, and knew that I was either bleeding or had broken my water.  To my dismay, it was blood.  A lot of blood.

At that moment, I made the transition that all doctors will make at some point in their life, but which we all fear:  from physician to patient.

I was now G2P1, EGA 31w2d, with a spontaneous abruption, praying to feel the baby move.   I had no history of trauma, no cocaine use, no history of bleeding disorders.  My husband (who was, luckily, at home) scooped up our daughter and me and drove at what felt like 100mph to the hospital.   I sobbed in fear the whole way.  Thank god, on arrival to the hospital, our little one had a healthy heart rate.  But I was still bleeding, and contracting, and had some cervical dilation.  What followed:  8 long hours of being NPO in fear that I’d need an emergency
C-section.  A long discussion with the NICU fellow about prognosis if my little one needed to be delivered that night.  An admission to the labor & delivery floor “just to watch.”  Then a week in the hospital.  Then 2 months on bedrest.

No one knew why I had spontaneously abrupted, and therefore no one could say if or when the abruption would recur.  Although no large clot
had been visualized on my ultrasound, that didn’t mean that my placenta was okay.  I was a nervous wreck, hoping my little one would gestate until he was big enough to avoid the NICU.

Thank goodness, nothing happened over those long 2 months.  I had occasional contractions, occasional spotting, no bright
red bleeding.  And 1 week shy of my due date, my son was born, small but healthy.  And I was healthy.  I realize how incredibly lucky I am, and how much tougher things could be.

Still – it was the scariest two months of my life.  And it has changed my way of doctoring.   I walked away from this
experience with 5 major lessons for my own practice of doctoring.

1. Empathize with patients’ and families’ anxiety.

I now understand why people over-interpret their symptoms.  I get why the patient with a history of CABG comes back to the ED every week for twinges of chest pain.  (“What if?…. Last time… I don’t want to be home alone….”)  Often, my primary role as a doctor in the emergency department is to assuage this anxiety, especially if patients have had a long wait prior to being dispo’ed.

2. Be honest about a lack of knowledge, and explain what we can given the limits of our diagnostic/prognostic ability.

I am a physician, and understand medicine!  But I am not an ob/gyn, and have been out of residency for more than a few years.  The only abruption I saw during my training resulted in a stillbirth, so had no practical experience in this diagnosis.  Scarier yet, even among my ob/gyn’s group, management of moderate abruptions differed.  This was scary.  Luckily my personal physician was stellar at making me feel comfortable
both with the lack of an evidence base, and with the recommendations she made.

For my patients who are sent home without a diagnosis or clear prognosis, I now try to acknowledge my frustration with this fact, and give an
outline of both what I know they do NOT have (e.g. “I am pretty sure your really bad headache isn’t a bleed, or a tumor, but I’m not really sure what’s causing it”) and an outline of when/why they should come back.  I make sure they feel heard, and reassure them, which is often the whole reason they sought medical care in the first place: just to make sure they were okay.

3. Don’t be offended when patients ask for their personal physician when they present to the ED.

In a moment of fear, you want someone you can trust.  I was lucky that my personal ob/gyn was on call the day of my abruption.  I’m not sure
how I would have responded to non-evidence-based recommendations had they come from someone other than her.

Now, when patients’ first words on seeing me are: “Have you called my doctor [X] yet?” – I tell them how lucky they are to have such a great doctor as their PCP/cardiologist/whatever, and reassure them that I will work closely with her/him.

4. Give good, thorough discharge instructions.

I left the hospital not understanding exactly what “bedrest” consisted of, and how much I could/could not do, and what would/would not increase my chances of doing well.  I think this was because no one really knows the right answer!  Still, not knowing was very tough for me at
first, as I was scared stiff of re-aggravating the abruption.

I now try to be as clear as possible with my patients about what their instructions mean.  (What is “weight bearing as tolerated”?  When can they stop taking Motrin?  At what point should they return to the ED or their PCP?) … .This often involves rewriting or augmenting our computerized discharge instructions, of course.

5a. Acknowledge, and encourage, the use of social supports.

Being sick is scary.  And I wasn’t even physically sick – I was more worried about my fetus!  I can only imagine how difficult life must be
for my patients with limited support systems, no money, and fear of losing their job if they stay out of work.  I know how tough it is for people to ask for help, but I encourage them to do so, for their own sake.

5b. Encourage the exploration of online support groups – Especially for chronic conditions, or diseases with little evidence base, the online community is a godsend.  For me, it was my only “good” source of information (although it was also a source of fear, if I didn’t triage sources well).  Heck, think of how important mothersinmedicine.com is for all of us!

Before my abruption, I was already interested in the use of technology to support patient engagement and behavior change.  After two months of bedrest, I became an evangelist for “mhealth”…

Of course, I don’t think that I was non-empathetic at baseline.  I am, honestly, one of those people who always wants to be liked.
But now I try to listen more.  I try to ask what patients are scared of.  I try to reassure more, and to include patients’ families and social supports.  I try to give clearer indications of “if/then” and “what if” scenarios:  e.g. “I don’t think you’re having a stroke, but here are the things to come back for, and here is what I think is going on”.  I now try to explicitly acknowledge patients’ and families’ fear, and encourage my patients to turn that fear to good service:  to use it to increase their engagement with their families, the online patient community, and their own bodies.

Most of all, I am now actively researching ways to use technology to facilitate patient engagement with their own health.  I don’t want this message to stop with me.

I welcome thoughts, comments, or partnership in so doing!

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