I Care About You, But I Hate What You're Doing: The Internal Struggles of a Primary Care Doctor

Gizabeth, a pathologist, just wrote about needing to maintain a "poker face" when she did a patient's biopsy, because she knew the diagnosis was metastatic cancer, and she knew it wasn't the right time or place to deliver that diagnosis.

This hit on something I've been struggling with for some time, now, and what I suspect many doctors struggle with (unless they've become completely detached):

Over these past five years as an internal medicine attending, there have been patients who have broken my heart, who have made choices I strongly disagreed with. Of course, as long as the choices are legal and not harming anyone but themselves, they can do that, and the point of my writing about these cases is not to debate these choices. It is to learn how to manage my emotions as both a physician and as a thinking, feeling human being.

How do other doctors deal in the immediate moment, and then in the long-term, when a patient follows a path you believe is wrong?

 I'm thinking of several cases (all details obscured or altered to protect true identities):

Several years ago, I took care of lovely, vibrant, fifty-ish year old woman, who in addition to living extremely healthfully, also saw a holistic provider. One appointment with me, we reviewed some test results that suggested she had cancer. I arranged for immediate referral to a wonderful specialist. The specialist confirmed cancer, and outlined a reasonable treatment plan that involved surgery and chemotherapy. About a week later, the specialist sent me a note that the patient declined all of it, and instead chose her holistic provider's plan of herbal remedies.

I was horrified. I called the patient and asked her if this was true. She said yes, that she thought of cutting and chemotherapy as worse than cancer, and would take her chances with the herbal tinctures, powders, teas, cleanses and energy healing offered by her holistic provider.


What would other doctors say to that?

I said, something along the lines that I respected her decision, but felt that I, as her primary care doctor, needed to inform her that she was choosing untested and unproven treatments, treatments that were not likely to help her at all. She said she would take her chances, and we hung up. That was the last I ever heard of her.

The above case is actually a combination of a few similar cases... It's not unusual for patients to turn down the 'Western medicine' treatment plan. Again, of course, the choice is the patient's, that is not debatable. What I struggle with is my own feelings. Because I know that when this situation comes up, when I KNOW the "Western Medicine' plan, though imperfect, is the patient's best shot at extending their life and quality of life, I know my heart beats like crazy, my palms sweat, and I have to work very hard to control myself, to NOT stand up and scream: "ARE YOU CRAZY?? You're planning on taking all kinds of potentially toxic and useless herbal crap when you have access to the best treatments in the world for this, and suffering people in every developing country would give anything to be here in YOUR place with the chance YOU have at a cure, and YOU are turning it down???"

Then, there's the opposite scenario.

I once took care of a lovely and also quite seriously ill man. He was extremely elderly and debilitated, with some dementia, enough dementia that all of his finances and logistics were managed by family members, though with enough insight and judgment to contribute to his own medical decisions. He had a terminal cancer diagnosis, on top of multiple medical problems, making his care quite complex. He was feisty at times. He had been asked to consider his palliative care and hospice care options on several occasions, and always became quite angry, usually ending up by shouting things like "I'm not going to let you kill me!".

He was admitted for serious, life-threatening complications related to his cancer. It was very likely that he would end up on life support without a chance of any meaningful recovery. He was asked again if he would consider hospice/ comfort care. He refused. His family, who had power of attorney, chose to abide by his wishes. He ended up near cardiac arrest and was sedated and intubated, and stayed in the intensive care unit on a ventilator for a very long time before he passed away, without ever having regained conciousness.

I don't need to tell many people in healthcare that this scenario is so common, I've seen in many many times. It plays out every day. It's just as heartbreaking to me, to see someone choose the cold, often prolonged ICU death, when they could have had the chance to go a homey hospice - or even home!- with the comfort of a morphine drip, holding hands with family members all around them, saying goodbyes or telling stories, until a naturally peaceful end.

Again, the choice is the patient's. But how do you deal with seeing this over and over again, trying to convince yet another human being that the choice they are making really, really sucks?

There are many other situations where my heart breaks. I hesitate to write about it, such a huge can of worms is the subject of abortion. It's with a heavy sigh that I even type this, as I know it stirs strong feelings and stronger words, pro- and anti-, either way. My point in writing is, again, not to debate the choice. In this country, thank God, the choice is up to the woman.

But I struggle, sometimes, to contain my own emotions when I am counseling a patient through her options.

I am pro-choice, and do believe that someone needs to provide safe pregnancy termination services to those who choose that. But at this stage of my life, I am personally, for my own self, pro-life. I did not choose to have any early risk assessment in my pregnancies, despite my own advanced maternal age. It wouldn't have changed mine nor my husband's decision; we agreed to carry on with any chromosomally imperfect fetus. We had even agreed to carry on with a pregnancy if it happened before we were married. We agreed that we have the financial resources and family support to care for a child, any child.

So, I struggle when I am counseling women who, like me, are financially stable, partnered, educated... who, in short, I perceive as having the resources available to care for a child, any child, special needs or not... and yet, they choose to terminate a pregnancy. In the room with them, I am professional; I smile kindly; I hand them the list of termination clinics; I counsel on birth control; I often see them after a procedure for followup.

But it is not uncommon that I tear up. I often need some space after one of these sessions to recover before I can go into the next patient's room. And I take it home with me. It makes me very, very sad.


How do other doctors deal with this? Especially, doctors who are mothers?

So many situations in medicine can affect us. We are all different in our beliefs and actions... But there must be situations that affect all of you, as healthcare providers. What are they? What touches you, and what do you do about it?

Guest post: Compartmentalizing work

I watched a child die.  Literally.  Took his last breath in front of me.  It wasn't an unexpected death, but nonetheless, still very sad.  What do you say when your partner says "How was your day at the office honey"?  What do you say?  How many of you share your bad days with your spouse?  If you don't, how do you assimilate what you deal with into your life?  Life went on that day, as it has to, after his death.  Yet, I couldn't help but think the universe should have stopped in some way, briefly, to mark his passing.  A leaf should fall, or the world should go quiet for 60 seconds.  We lost a child.  Our community lost a child. We lost the promise of his life, the contribution he could have made to our society.  What would his life have looked like?  The impact of watching life slip away was huge, on all the staff, as well as the family.  I found myself wondering, watching his mom stroking his arm just before he died, how do you comprehend that this evening, your child will not be with you? That your family will go from 5 to 4.  How do you tell his siblings that he died?  I watched my colleague go straight from his death to a mundane meeting, wondering how is it that life goes on after this little boy has just died?  I know it must, as mine did, and I know that the family's loss is not mine.  My children are safe and well.  So, my question is, how much do you share with your partner and your friends?  Do you have people in your life that you can share your sadness with, or do you have to deal with this on your own?  Not being able to debrief because you need to protect others is a lonely business.  Are we destined to cope alone, because we chose this path?

Jess


Bio - I live in the South, currently working part time in pediatrics.  I am happily married, with two healthy gorgeous babes.  I stumbled across MIM a few months ago and have been following it avidly since, as it helps me to deal with some of the issues I face, being a working mother in medicine. 

MiM Mail: The what-ifs

Ever had one of those cases where you look back and just wish you'd done things differently? What's your way of handling this feeling? Might you be willing to share your moving forward strategy?

I'm an anesthesiology resident transitioning back to work from maternity leave. While I love what I do, there have been quite a few days when I definitely feel that the transition back to work is not as fast as I'd like. The days where I feel like I'm relearning things I used to know. Yes it's kind of like riding a bike after you haven't been riding one in a while, but when you're training, sometimes you don't feel like you ever really knew how to ride it that well even. And I have many moments where I am mentally kicking myself because I just remembered something I should have done or handled differently.

[The case below has been changed to protect patient and staff confidentiality]

For instance, recently there was a code blue at the hospital. A man who had been undergoing a line insertion was now having massive hemoptysis. A double lumen tube was inserted to isolate the bleed. Some air seemed to be entering one lung. The PAC balloon is inflated and the hemoptysis seems to have stopped for a while. The patient seems relatively stable with good sats and bp and the patient's main physician consults ICU to take the patient for close observation. At the back of my head is this niggling feeling as I am not quite sure whether this tamponade from the PAC balloon will hold - should we consider if we need a surgeon to sew up whatever's bleeding? But soon, the patient is bleeding again, CPR is started, the surgeon shows up but the patient is too unstable and despite best efforts, the resuscitation is unsuccessful. When I get back home, I read up on this, and more questions fill my thoughts. What if we'd gotten a cardiothoracic surgery consult much earlier on? Or heart-lung bypass? But now it's too late for the what-ifs and should-haves. I just wished I had known more at the time to be more useful.

Shortly after, I was in a simulator session. While I was fast on initial management managing a crashing patient and securing the airway, I got hung up on troubleshooting ventilator equipment that had failed, without moving on to switching my equipment. It was one of those how-stupid-of-course-I-should-have-thought-of-that moments - if something's not working, sometimes the best option is not to try and fix it, but to switch it entirely. I know that! But hadn't done it fast enough. In a simulator, it's not a real patient crashing and that's great. But if this was a real-life situation, that patient may not have been as good.

I find it hard not to mentally kick myself, or to look with envy at other colleagues and wonder how they seem so much more confident and competent. When I look at my flubs, I often feel like a Bridget Jones while others seem like a Grace Kelly or better yet a MacGyver - always there with the best plan in the nick of time, executed with calm and grace.

I hope I'm not the only one out there who has felt this way - trying my best but feeling incompetent or stupid at times. Yes it is a learning opportunity, and yes, I hope it gets better, and yes I feel I know more than I used to - but when does one start to feel confident and competent, and bring-it-on-because-I-can-handle-it rather than I-hope-I'm-seeing-bad-stuff-when-there-is-someone-else-on-who's-better-than-me-there-to-guide-me-through-it? When I was a med student, I looked at the residents with awe for their competence and confidence, and now that I'm the resident, I don't know that I feel that way.

Have you ever felt this way? Have you ever had cases that didn't go as well as you'd liked? How did you handle it?

RLMD

Guest Post: Five 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!


Emergencymom is an academic emergency physician and public health researcher on the East Coast.  She is proud mother of 2 (aged 4 & 1), and wife of a small-business-owner.  Her work-home balance is precarious, but generally enjoyable.  She still can't believe that she gets to do research for half her work-week!  She welcomes suggestions on how to get 4-year-olds to stop whining, how to have dinner cook itself, and how to not be perenially 1 hour shy of a good night's sleep.

The 4 Stages of EMR Adaption

Stage 1: Naïve anticipation

Last summer, as we began the process of choosing which EMR (electronic medical records) system that we would buy, I was filled with my usual optimism. Despite the naysayers, I was sure that our efficient office would have no trouble adapting from paper charting to computer charting. Above all else, I was convinced that Moi, ‘Ms. Computer Savvy Blogger' would love EMR. In the months leading up to the transition, I began to look condescendingly at our cumbersome paper charts and our 3x5 card tracking system for abnormal labs, as I anticipated their retirement. They seemed quaint relics, like cassette tapes or Ms. Pac-man machines. I could hardly wait for the charts to be replaced by information at my finger tips and the promised fool proof tracking systems that would improve quality, while making my life easier. Though my partners voiced trepidation about what we were to endure, I had little doubt that we would be paper free in just a few months. It would take work and there might be a few hiccups along the way, but I knew that if we put in the time and effort, the transition would go smoothly.

Stage 2: Adaption Angst

We decided on Greenway, a system that was specifically marketed for OB/GYN. Training was scheduled for early November, with the plan to ‘GO LIVE’ the following week. Leading up to our training, I (as self appointed EMR point person) had several conference calls with our trainer. It was during these calls that the first inklings of doubt began to set in.

Every question I posed to our trainer was answered the same way, “Oh, yeah, that is SUPER easy, I’ll show you next week.” Her voice was high pitched and bubbly, like an excited Barbie doll. While I was naïve enough to think that the transition would go well, I was not an idiot. I knew that not every aspect of EMR would be, as she repeatedly intoned to me, “SUPER EASY!”

Training week did not flow well. While we all did manage to learn the basics of charting notes and navigation of the software, any question outside of basic charting was met with a blank stare from our Barbie doll trainer.

“How do we order labs?”

Blank stare.

“How do we track labs?”

Blank stare.

“How do we fax?”

Shrug.

Things weren’t quite so “super easy” anymore.

She abandoned us after a two weeks. That’s when the fun began.

Stage 3: Self Pity/Anger/Denial

While I did learn the EMR fairly quickly, my biggest disappointment came in the realization that it did not make my life any easier. On the contrary, it added at least an hour to my day. Everything just takes longer.

It took us several months to figure out the extremely cumbersome tracking system for labs. I began to look longingly at the 3x5 note card boxes that I had previously scorned. It takes me 14 clicks to sign off a lab, IF ITS NORMAL! While it used to take two seconds to make a quick signature, now it takes 14 clicks. My nurse also has several extra steps involved with routing documents back and forth. If there is an abnormal lab, I then have to open multiple documents to decipher the plan, task it to the correct staff and turn on all the tracking mechanisms.

Home has always been my sanctuary, unless I was on call. Now I find myself leaving work before my charting is completed, so I can attempt to be home for dinner. After the kids are asleep, I dial in to finish charting. Home is no longer a safe haven. I really hate the fact that I can ‘work from home.’

I began to relish the last few paper chart patients. When I would see a paper chart in the door, I would get that giddy excited feeling, like when a patient brings in hot fresh chocolate chip cookies for you at three o’clock on a Friday afternoon. I realized that it is so much easier for me to remember the patient details by leafing through a paper chart, rather than clicking on 17 different documents in the electronic file. Paper charts were nostalgic for me. I would flip through and see the handwriting of previous employees; coffee stains of the day I was running late and the smiley faces I would draw on the lab results when a patient’s cholesterol finally came down or their Chlamydia finally cleared up. Paper charts are full of physical, tangible memories in a way that an electronic file can never be.

I felt betrayed by Miss ‘Super Easy”. Yes, the actual charting was not difficult, but it was time consuming and the orders tracking system was cumbersome. Most importantly, I didn’t HAVE an extra hour in my day for charting.

And did I mention the FOURTEEN CLICKS?

Stage 4: Acceptance

Slowly, things have become slightly better. I will admit that being able to READ everything is very much a benefit (the computer gets bonus points for penmanship!). Also when on call, it is great to be able to pull up charts at home to review the patients history while talking to them. There is no more hunting down prenatal records when someone goes into labor on a weekend. As patients come back for return visits, it definitely gets easier. EMR still adds time to my already packed work day, but slowly I am figuring out how to make it work for me.

It was the following encounter that convinced me that I had to truly accept EMR and stop my grouching about it:

Last week I was seeing a young girl for a check up before she left for college. She was having issues with her birth control pill and wanted to switch.

This is the type of encounter that makes me hate EMR the most. While in the room with the patient, I have to attempt to look through her old chart which is in a zillion different saved files in her new electronic chart. So as I’m clicking on each file, attempting but failing to find the one that tells me which pill she was on before this one, I make some smarmy comment about how I hate my new computer.

“That’s Ok,” she says in a slightly patronizing voice,” My Grammy is a nurse, and she has a hard time learning computer stuff too!”

At this point my jaw literally dropped. It took every ounce of self control to maintain my composure at that moment.

Ummmmm did she just compare me to her GRAMMY? I am 36 years old!

After a few deep breaths I regained my composure, found the file I needed and sent her on her way with a new script. Sent by e-prescribe, of course.

From that day forward I have vowed to never complain about EMR again. Not even the fourteen clicks. No its not perfect, but it is here to stay.

Every time I get frustrated and want to complain, I just take a deep breath, smile and whisper the word, “Grammy.”

Seriously, I wanna know...

Who do your children consult for minor medical problems? Who "doctors" the scratches, sniffles, and bug bites?

What If?

In Eat, Pray, Love Elizabeth Gilbert introduces us to her goons, Depression and Loneliness. They follow her through Rome and Italy as she begins her journey back to herself. I have thugs, too – the What Ifs? They’re a nebulous group of wanderers that pop up as uninvited guests to my thought party.

As a physician they appear as I’m trying to decide how to treat a febrile infant with no source for the fever. “What if,” they poke, “this baby is septic? Will the parents call for more advice, treatment?” “Will this child die in the night?”

“What if the eight-year old that hit his head on the basketball court has a subdural hematoma? What if I miss this serious diagnosis? What if I get sued?” They love to spin tornado-like into larger and larger scenarios of doom. Rarely, they bring news of good. There’s no “What if you catch this hip click before it becomes avascular necrosis of the femoral head and needs a hip replacement when this patient is 25 years old?" There’s no “What if you’ve caught this MRSA before it’s an admission to the hospital?”

They bleed into life as a mother, too, where they take advantage of my sympathy and relative novice state as the parent of a grade- schooler and tween. Never having charted this particular course in parenthood – and it’s very different being a parent and having experience and being a physician and having book-knowledge – is perfect fodder for these thugs.

“What if being too tired to read to Harry tonight makes him feel unloved, unintelligent, uninteresting – take your pick? What if my slightly overweight sons don't hit that growth spurt just right to put their body mass indexes into a normal range? What if someone takes my social and easy-going seven-year old? Who will I call? Where do I look first? What would he do?”

Neurosis is part of my hard drive. I was born to worry about something and these goons know that. A good day for them is when they spin me so tightly that I spook when someone drops a pencil or my husband sticks his head into my office to say hello. Sometimes the What Ifs bring their cousins the What’s Next and Whys. Newspaper trivia about lame lawsuits and pediatric listservs feed their hungry mouths, but they’re always starving for more. Sleep deprivation is a neon open sign to my goons, and if they can catch me just right, What Ifs can keep me up all night with their myriad possibilities.

Lexapro is weak garlic to the What If bloodsuckers that leach my energy. Gilbert’s kept her vampires at bay with Wellbutrin. Breathing exercises and meditation return me to now from La La Future Land where these ding-a-lings prefer to inhabit. Running, walking and exercise also repel the monsters that dwell in my head. Maybe they hate body odor and running shoes. Experience locks the door on the What Ifs cage using reason and common sense as arsenal for the grenades they lob at my head.

Do you know the What ifs?

Comfort

I had to tell a Mom that her son died. He was a grown young man, victim of a freak accident, out of the blue.

From what I could glean, Mom was essentially all alone. It was, or had been, a positive time in their lives. Her son was soon to be married, and they had been enjoying the pre-wedding whirl.

She knew, as they all do when we place the family in the ‘Chapel,’ that it was bad.

I tried to do all the things we are taught about communicating bad news to families – get down on eye level, use unmistakeable words and simple sentences, hold a hand, give her time.

Her sobs, though inaudible, were heartwrenching.

I told her that I don’t think he felt any pain, or even knew what happened. It was true this time, although sometimes I say it even when I’m not sure. It’s the only comfort I can offer.