Reconnecting to Mission, Patients, and Colleagues

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What’s the most personally fulfilling aspect of your work?  In times of uncertainty, threat, and transition, what holds you up?

This past week, I had the privilege of standing alongside giants in the fight against physician burnout.  In a series of presentations at the annual meeting of the American College of Physicians (ACP), we did our best to acknowledge and validate the current state of physician burnout (about half of all physicians in all specialties report at least one symptom), and then present as many strategies to reduce it as time would allow.  We showed how changes in workflow, task distribution, and technology, such as pre-visit labs and scribes, have been shown to improve physician satisfaction, team morale, and patient experience.  My role was to attempt to inspire my fellow internists to claim their individual agency, model a culture of wellness, and advocate for systems change in their home institutions.

The content felt dense but manageable, and the audience appeared engaged.  Our colleagues from all around the country approached us afterward to clarify studies of efficacy and ask about local representatives for advocacy in the ACP.  In the end, I think we achieved our primary objective of having most attendees leave with just a little more hope for our profession than they came in with.

Over the four day conference, however, what consistently grounded me in professional mission and meaning, not only in our own presentation but in others, were the personal stories.  That is how we humans relate to one another, after all—through narratives.  And connecting to mission and colleagues is key to maintaining a healthy and productive workforce, physician or otherwise.

Our attendees participated in two practices that I’ll share here.  Both were “Pair and Share” activities, meant to stimulate reflection both internally and externally.

Who In Your Life Really Changed You?

First we asked our colleagues to think of a patient who changed them, how, and to what end.  I know there have been many patients who changed me, but I always think of one particular woman.  She was middle aged, obese, diabetic, depressed, and severely disabled from osteoarthritis.  She lived alone and had a sparse social network, and her life partner had died unexpectedly a few years before I met her.  At every visit we struggled through the same fundamental challenges of weight loss, glucose control, and pain management.  How could she take her diabetes medications more regularly?  How could we control her pain without having to take opioids every day?  How else could we manage her depression, as some of the medications were raising her blood sugar?  She may have cried at almost every visit; wailing was not uncommon, and once she even vomited from cumulative distress.  Our relationship was good overall.  I overcame my impatience with her non-adherence to the treatment plan as I understood her life situation better.  But for four of the five years we knew each other, I saw few if any indicators that her thought, emotional, and behavior patterns would change.

Then things started to turn around.  She started coming consistently to appointments, no more no-shows.  She got online and found a community center that was accessible by bus.  She connected with a knitting group and started going to art fairs to sell her creations.  She started taking her medications more regularly, and lost enough weight to have her knee replaced.  By the time we parted ways, she had transformed from a weeping victim of circumstance to a woman with agency, self-efficacy, and goals, dammit!  And most of this had nothing to do with me.  I simply had the privilege to witness and support her intrinsic revolution.  From her I learned what perseverance looks like; I learned about hope and self-redemption; I learned that I should never make assumptions about anybody’s future.

Who Supported You in a Time of Vulnerability?

They said do the hardest thing that you know you don’t want to do for a living as your first rotation.  So I chose surgery.  In July of my third year of medical school, my days started around 5:30am and could end the next night at 10pm if my team was busy post call.  Most faculty physicians were kind and wise, or at least non-abusive.  Some, however, not so much.  What buoyed me most through that rotation was always the support and protection of the residents on my team.  I would watch them get abused by our attendings, but that sh*t never rolled downhill when the boss left the room.  I did not fully realize until years later what a gift that was and how much it spoke to the character of these men (they were all men).  This was in the 1990s; verbal abuse of medical students and snide comments about one’s appearance, gender, and just about everything else were simply to be expected.  But my favorite residents always pulled me aside and asked how I was.  They always made sure I felt confident about my role on the team, and they taught me basic skills with conviction and encouragement.  As I was about to insert a patient’s bladder catheter in the operating room, my elder brother in training told me firmly, like he really believed I could do it, “Don’t be afraid, hold it (the penis) like a hose.”

As we did this reflection exercise at the meeting last Wednesday along with our audience, I was so moved by these memories that I looked up one of my old residents that night and sent him a thank you card.  I bet he won’t remember at all who I am, but he will hopefully feel validated that he is in exactly the right position now as program director of a surgery residency.

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Recalling stories like these, and then sharing them with a person who truly listens, receives them generously, and simply helps you hold them (that was the instruction to the group—when it’s your turn to listen just do that, no interruptions, no jumping in), reconnects us to our calling in medicine.  It’s not just about the patients or the science.  It’s about all of the relationships and how we tend them.

We will not solve the immensely complex problem of physician burnout overnight.  It will take a concerted effort at all levels of healthcare, and physicians cannot and will not do it alone.  And it’s not that we are stoic, arrogant, and somehow intrinsically flawed, and thus dissatisfied with our work and leaving the profession in record numbers.  It is a systems problem, no question.  And, while we call our congressional leaders and professional advocacy groups to change policy, while we lobby our hospital administration to hire more support staff and move the printers closer to where we do our work, we can all take a few minutes each day and reconnect to the core meaning and purpose in that work.  Let us all remember a cool story and share it today.

Pain and Desperation

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When was the last time you used any narcotics?  I think I took some of my mom’s cough syrup with codeine over a decade ago, when I felt like I might actually cough up a lung.  Before that it was one dose of Darvocet after having four impacted wisdom teeth extracted at age 18.  I don’t really remember much after swallowing the pill and lying down on the sofa.  I was given multiple opioids during knee surgery last year, but needed only Tylenol and Advil afterward.  Looking back on the post I wrote about that experience, I realize even more how I was influenced by this piece in the New York Times just a month before my surgery.  In it the author is reminded that pain serves an essential purpose, and it’s better that we not necessarily seek to obliterate it at every turn.

* * * * *

Four or five times in the last two weeks, I have received calls from local pharmacies to confirm opioid prescriptions that I did not write.  They were all paper prescriptions for patients I have never met, caught by astute pharmacists who suspected fraudulent activity.  This is the first time it has happened to me, and I know many of my colleagues have experienced the same.  Pharmacies in the area have now flagged my name and license number, and they know not to fill any controlled substances without direct confirmation from me.

What a morass.  How did we get here?  It’s a rhetorical question, really, but not a simple one by a light year.  When I started my training, we were taught to consider pain the ‘5th vital sign.’  Every patient assessment included the cartoon face pain scale.  Anesthesiologists’ prioritized rubrick for pain control started with long acting opioids around the clock, then regular anti-inflammatories if no contraindications, then short acting opioids as needed for breakthrough pain.  In the hospital I never questioned this method, especially since I almost never interacted with these patients after discharge and was oblivious to follow up issues.

It was not until I started in practice that I experienced the multidimensional challenge that is pain control and opioid prescribing.  After 15 years I am still learning the layers of complexity, unique for every patient, and I see that even if we understand it (which I think we do not), most of us feel helpless to address it.

The pharmacist I spoke to today told me that his store’s standard procedure is to inform the patient that the prescription was proven to be fake, advise the patient not to attempt such an act again, and let them know that the prescriber is aware and the police will be contacted.  It was that last part that made me pause.  Because even as I intend to file a police report (as advised by my institution), the answer to the problem is not, in my opinion, rounding up patients with chronic pain and throwing them in jail.  In order of importance, I think the opioid crisis is first a social, then a medical, and only then, a criminal problem.

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Increasingly, we have become a society of immediate gratification and entitlement.  We want and expect a magic pill for and complete relief from whatever ails us—because it’s the twenty-first century for crying out loud, how could we not have that already?  Also, medicine has become increasingly transactional.  We, patients and physicians alike, experience ‘care’ in predetermined packets of protocol and procedure, and spend considerably less time in conversation, education, expectation setting, and actual caring.  The advent of the internet has accelerated this immediate gratification expectation.  It also gives many of us an illusion of connection through social media, when in reality, we are actually less and less connected to one another.

Pain results from myriad causes.  We all have varying thresholds for feeling and tolerating pain, which vary themselves depending on circumstances, mindset, expectation, and meaning making (think childbirth versus bike accident).  There are so many factors that impact our pain experience, including dehydration, sleep deprivation, low mood, and emotional and/or mental stress.  Loneliness, depression, anxiety, sleep disruption, suicidality, and substance abuse are all on the rise.  And all of these conditions lower our thresholds for pain and the harm it does to us.

For many, opioids are indeed the immediately gratifying magic pills.  But the magic wears off faster and faster, and both pain and the desperation for relief accelerate in the wake of short and long term withdrawl.  As physicians, we feel an intense desire to alleviate suffering.  Once a patient has experienced the profound relief (both physical and psychological) from opioids, it feels cruel for us to withhold them, even when we understand fully their risks and the long term harm they cause.  And we have less and less time to explore with and educate patients about adjunct pain management practices, such as mindfulness, biofeedback, and movement.  Everybody feels despairing and impotent, and this drives people to do things they might not otherwise do, like make a fake prescription for hydrocodone and try to get it filled.

I know there are real criminals out there, people not really in pain, who do this to make money—to take advantage of people in real pain.  I don’t know who’s who.  But the story I tell myself is that this is not most people.  What we need is a stronger infrastructure to address chronic pain at multiple levels—individually, in community, with policy, and culturally.  As I write this, even as a physician with a leadership title, I feel powerless and a little hopeless.

But maybe a good start, at the individual level, that we can each do the next time we look ourselves in the mirror or meet another human being on the street, is to just exercise a little compassion and generosity.  I assume that those patients presenting the fake prescriptions, if they are real patients, are not criminals at their core.  Pain makes us do unthinkable and unbelievable things.  I hope we can all help one another find better sources of relief and support.

Theory and Practice

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Does anyone become a great skier or volleyball player by just reading books and watching videos of other people doing it?  Of course, not.  And even if you have the best coach, with the most knowledge and expertise, you still have to get out on the trail or the court and do it yourself, find your own groove, create your own style and habits that work for you and your team.

I realized this over the past week, as once again I found myself calling forth everything I have learned about leadership from books and observations of other leaders.  Leading people is hard, and I often feel at the same time that I do it well and that I totally suck at it.  I worry that because it feels mentally and emotionally exhausting, I must be doing it wrong—like if I really knew what I was doing it would just be easy.  But that is perfectionism and fixed mindset talking, I’m pretty sure.

Knowing theory is key, no question.  If you don’t understand in advance what it will be like to stand up on skis (they don’t stop themselves and if the tips are pointed downhill that is exactly where you will slide), you will fall and risk injury to self and others a lot more than if you are prepared with a few pointers in advance.  It’s the same with leadership.  Remembering how it feels to be led well, versus poorly, allows me to have empathy for those I lead.  Mastery of, or at least proficiency in, some key communication tools such as reflective listening, nonjudgmental questioning, and objective feedback, makes the skills easier to access under stress and pressure.  Holding core values and principles in front, and exemplifying them, rather than just professing them, earns trust and credibility.

I wrote to a mentor recently, “I find myself repeating language from the books, inventing analogies and using examples from the team’s lived experience to show how the theories apply.  Words like empathy, curiosity, generosity, non-judgment, deep breathing, and ‘How fascinating!’ exit my mouth a lot, as well as, ‘It’s all about relationships!’ People must see me as a broken record…”  He reminded me that we need these mantras to keep ourselves focused and also to repeat out loud and invite accountability in our actions.  I wholeheartedly agree.  Maybe I will take a misstep here or there (no maybe—it will happen!).  It won’t be because I’m not trying or I don’t care—it will be because I’m human and we all make mistakes.  It’s because I’m out there practicing.

When I think back to high school volleyball practice, residency, personal training, and the early days of parenting (hell, every day of parenting), it’s not the easy days that stand out in memory.  It’s the hard days, the days when I really struggled, but came out having grown, even in a little, in my learning.  It’s the days when I can say, hey, I know better now, and I will do better next time—bring it.

So yes, leading well is hard.  It’s exhausting.  It costs inordinate amounts of energy, self-awareness, -monitoring, and -control.  It makes me hypervigilant of my words, posture, and actions.  Theory and practice go hand in hand; they are the twin pillars of learning, application, and success in all realms.  I will keep reading for theory (I highly recommend Legacy by James Kerr and Big Potential by Shawn Achor).  I will keep showing up every day ready to do my best in practice.  I feel confident in the trust and credibility I have already earned, and that people can see that I’m honestly doing my best, for all of us.

 

Synthesis and Integration: Self and Other Focus

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Hey friends, how was your week?  Learn anything new and interesting?  Anneal any new ideas to existing frameworks in your already complex world view?  I did!  And it came in another big wave after my presentation on Friday.

I wrote last week about how I put together a new presentation.  For the first time, I added the idea of medicine as a complex adaptive system to a talk I gave to physicians at various levels of training and practice.  The objective of the presentation was for people to understand the scope of physician burnout, and leave with some ideas of how they could not only cope better themselves today, but also influence the system and move it toward a healthier, more compassionate state in the future.

As usual for my talks, I focused first on personal resilience.  Many physicians push back at this idea, and rightly so, as many medical organizations have instituted physician wellness programs aimed mainly at ‘fixing’ the doctors with yoga and meditation classes, while allowing the system that burns them out to continue its toxic trends toward over-regulation, loss of physician autonomy, and driving metrics that lie outside of, or even counter to, our core values.  I worried that my talk would be taken as just another attempt to tell physicians we aren’t good enough at self-care.

Thankfully, the feedback so far has been positive and I have not heard anyone say they felt berated or shamed.  I hope it’s because in addition to tips for self-care (eg 7 minute workout, picnic plate method of eating), I talked about how each of us can actually help change the system.  In a complex system, each individual (a ‘node’) is connected to each other individual, directly or indirectly.  So, difficult as it may be to see in medicine, everything I do affects all others, and everything each other does affects me.  This means I can be a victim and an agent at the same time, and the more I choose one or the other (when I am able to choose), I actively, if unintentionally, contribute to the self-organizing system moving in one direction or another [URL credit for image below pending].

Nodes in Complex System

My primary objective in every presentation is to inspire each member of my audience to claim their agency.  Before that can happen we must recognize that we have any agency to begin with, then shore up our resources to exercise it (self-care and relationships), and then decide where, when, and how that agency is best directed.

 

In 5 years of PowerPoint iterations, including and excluding certain concepts, I have always incorporated David Logan’s framework of stages of tribal culture.  Basically there are 5 stages, 1-3 being low functioning, and 4-5 high functioning.  The tribal mantras for the first three stages are, respectively, “Live sucks,” “My life sucks,” and “I’m great”.  Stage four tribes say, “We’re great” and in stage 5 we say, “Life’s great.”  The gap between stages 3 and 4 is wide, as evidenced by the traffic jam of people and tribes at the third stage.  In my view, the difference is mindset.  In the first three stages, most individuals’ implicit focus is on self, and subconscious mindset centers around scarcity and competition.  Victims abound in these cultures, as we focus on recognition, advancement, and getting ours.  We cross the chasm when we are able to step back and recognize how our mutual connections and how we cultivate them make us better—together—we see the network surrounding and tied to our lone-node-selves.

This week I realized that crossing the stage 3-to-4 chasm relates to two frameworks I learned recently:

The way I see it, in Logan’s tribal culture structure, one initially works toward self-actualization, essentially achieving it when fully inhabiting stage 3, “I’m great.”  But crossing to stage 4 requires self-transcendence, as described by Abraham Maslow, by recognizing a greater purpose for one’s existence than simply advancing self-interest.  In the same way, through stage 3 we live in what the Arbinger Institute describes as an ‘inward mindset,’ and we cross to stage 4 when we acquire an ‘outward mindset’, which is pretty much what it sounds like.  Essentially in stage 3 we mostly say, “I’m great, and I’m surrounded by idiots,” and in stages 4 and 5 the prevailing sentiment resembles, “We’re great, life’s great, and I’m so happy to be here, grateful for the opportunity to contribute.”

An astute colleague pointed out during my talk on Friday that we do not live strictly in one stage or mindset in serial fashion.  Depending on circumstances, context, and yes, state of mind and body (hence the importance of self-care!), we move freely and maybe often between stages, sometimes in the very same conversation!  The goals are to 1) look for role models to lead us to higher functioning stages more of the time, and 2) model for others around us to climb the tribal culture mountain with us, spending more and more mindset and energy at higher and higher stages.

The problem is the system, and we are the system.  So, onward.  Progress moves slowly and inevitably.  It will take time, energy, and collective effort.

We’ got this.

Attune and Attend, Continued

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Last week I started and ended my post incensed on behalf of my friend, who felt coldly and arrogantly dismissed by her new doctor.  While I considered that his behavior may be influenced by his circumstances and did not attack his character or make generalizations based on gender, age, etc., I did blame him individually for how my friend felt in his presence.

Another friend read the post and said the doctor was not to blame, rather it’s the system.  We exchanged thoughts and agreed that it was not all the doctor’s fault, and the whole healthcare system in our country is just a big mess in general.  I continue to have daily conversations around physician well-being and systems transformation in medicine, and every single encounter advances my understanding of and awe at the whole situation.  Here are my most current thoughts—bear with me, please.

3 Reciprocal Domains of Professional Fulfillment

Most of us working in the physician well-being space have adopted a model for professional fulfillment developed by our colleagues at Stanford.  If you care at all about your doctors’ professional health and how that impacts the care they deliver, I encourage you to read this article that describes their approach.  In it, they define efficiency of practice (eg team workflow, electronic health record use and misuse, systems bureaucracy), culture of wellness (institutional attitudes that advocate for self-care, peer support, and mutual compassion between team members and patients), and personal resilience (individual skills and behaviors that promote personal well-being) as the three mutually influencing factors that determine, for individuals as well as organizations, our overall professional health and well-being:

The many drivers of both burnout and high professional fulfillment fall into three major domains: efficiency of practice, a culture of wellness, and personal resilience… Each domain reciprocally influences the others; thus, a balanced approach is necessary to build a stable platform that will drive sustained improvements in physician well-being and the performance of our health care systems.

For the record, I fully concur with this approach, and with one of the authors whom I met at the international conference in Toronto, that the most important parts of the framework are the arrows reminding us always to look for how the domains intersect and influence one another.

We Are the System

In the article, the authors write, “Efficiency of practice and a culture of wellness are primarily organizational responsibilities, whereas maintaining personal resilience is primarily the obligation of the individual physician.”  This is where I differ somewhat.  I fully agree that an organization’s culture is set at the top.  Designated leaders lead by example, admit it or not, like it or not.  They (and we—all doctors bear this responsibility on any given care team) provide cues for acceptable and unacceptable behavior, positive and negative.

That said, a team or an organization’s culture is executed and manifested day to day, moment to moment, in every interaction, by each individual within the system.  This is the essence of complex systems—they are self-organizing at a global level (hence soon after joining a group we find ourselves adapting to fit in), and also emergent and evolutionary at the granular level (one person can turn a place around over time—have you seen it?).  So in my opinion, both leaders and individuals are responsible for creating and maintaining the Culture of Wellness in medicine.  We are the system.  If you’re interested in more of what I think about this, check out this podcast from September 2018 when I presented to the surgeons and anesthesiologists at the University of Wisconsin at Madison.

In a Complex System, It’s All About Relationships

A person is a complex system.  In my practice (and in my own life) I try always to attend to the relationships between 5 reciprocal domains (labelled intentionally after the Stanford model) of health: Sleep, Exercise, Nutrition, Stress Management, and Relationships.  How do they relate?  When I don’t get enough sleep I tend to overeat; when I eat too much I feel sluggish and unmotivated to exercise.  When I exercise less I am more susceptible to stress, which puts my relationships at risk, which then disrupts my sleep, and the downward spiral persists.

A patient care team, a medical practice, a hospital—these are all complex systems.  Besides the three domains in the Stanford model, what other factors contribute to the self-organizing nature of such systems?  Perhaps individual autonomy, collective loyalty, shared mission, attention to training, and communication?  What inter-relational factors dictate an individual’s or a subgroup’s behavior, and how does that influence the whole organization?

I am reminded of starlings in a murmuration, or sardines in a school.  Seen from afar, the mass of animals appears to move as one agile and sentient organism.  In reality, each animal’s movement is at once independent of and intimately tied to those in its immediate vicinity.  Each animal’s awareness of and response to its neighbors are acute and instantaneous, respectively, and thus the collective is able to evade predators and give humans insight into what true multi-mutual cooperation looks like.  They are attuned.  This is possible because, according to science:

The change in the behavioral state of one animal affects and is affected by that of all other animals in the group, no matter how large the group is. Scale-free correlations provide each animal with an effective perception range much larger than the direct interindividual interaction range, thus enhancing global response to perturbations.

Would your organization, seen from afar, appear as organized and fluid as a flock of murmuring starlings?  What would it require in order to do so?

* * * *

So what does this mean for my friend and how she (and we all) should think about doctors and our healthcare system in general?  How does this actually relate to solutions to the problems I presented last week?  Clearly, as I beat the long dead horse again and again, it’s about relationships, of course.  But we have to think more deeply than just about our behaviors and actions—we’ gotta buckle up and dive into their origins—spelunk our default orientations toward self and others, our automatic settings, and how they manifest in our relationships and create, intentionally and not, our collective systems.

Once again, I have hit 1000 words on this post and it’s late.  I’m getting there, I promise—not that I have the solution!  I’m simply learning and synthesizing more every week about how we can more consciously and mindfully approach the problem.  It has everything to do with the books I started reading recently about complexity, leadership, and mindset, and how they help me see my conversations and relationships in a new, exciting light.

More next week, friends!

Attune and Attend

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My friends, I am offended.  I’m insulted and frustrated.  Part of me screams, stomps, and rages inside.

I am embarrassed.

My friend went to establish care with a new primary care physician last week.  Before the appointment she was told to bring all of her medical records.  No instructions, no specification of which parts or in what form.  So, being the tech-savvy and eco-friendly woman she is, she downloaded all that was available to her onto a thumb drive, as it was rather copious now in her 7th decade of life.

Upon arrival, she presented the drive to the woman who initiated the evaluation.  She thinks this was a nurse; but she’s not sure.  The woman said she could not ‘handle’ the thumb drive, but said, “I can just pull it up here online.”  What?  Ok whatever, clearly the medical record request was simply a routine request made of all new patients.  Thereafter the woman proceeded through routine medical questioning.  But as my friend answered the interrogation, she felt distinctly ignored.  Her concerns were not addressed and she did not feel any rapport.  The woman did an EKG and left the exam room.

Later, while my friend was still sitting on the exam table, the woman returned with an old man in a white coat.  He stood there, hands behind his back, and informed my friend they had called for an ambulance to take her to the emergency department.   The EKG showed an abnormal heart rhythm.  They said she would likely be in the hospital for two days for observation and tests.  The nurse and doctor spoke to each other but not to my friend.  They did not ask her how she was feeling, or what she knew about the/her condition, and they did not check the online record for evidence of past evaluations or recommendations.

My friend refused, for various reasons, not the least of which was that this condition had already been thoroughly evaluated, multiple times, and was actually well controlled.  But the doctor and nurse showed no interest in knowing my friend, nor did they seem to care to include her in any medical decision they made about (for) her.

Granted, this is my friend’s side of the story.  But for right now this is where I focus, because her experience is all too common, and I hate it.  She experienced everything that makes physicians and our healthcare system look and feel so broken, and that contributes to the widening relationship gap between patients and physicians/providers.

She was asked to bring her records, she put forth the effort to do so, and they were not reviewed.

She felt ignored and dismissed, even though the objective of the visit was to establish care and initiate a long term, collaborative relationship with a new primary care doctor.

She was ordered to submit to an ambulance transfer to a hospital emergency department, with neither discussion nor negotiation of other care options, and without regard to the financial and other costs to her.

She felt harassed by the office in the following days, receiving calls admonishing her for not presenting herself to the emergency department.

The bottom line is that my friend felt completely unseen in this encounter.  She felt treated like an object—a set of data, a statistic, a box on a flowchart.  Context, history, and individuality be damned.  When you’re in a relationship with someone who is supposed to help you, on whom you rely to help you understand the best plan of care for you personally, feeling unseen, dismissed, and belittled is exactly the opposite of helpful.

Maybe we should not judge the nurse and doctor too harshly.  We all know the time and volume pressures primary care providers live under these days.  Maybe they were distracted by other, sicker patients they had seen that day.  Maybe that made them more vigilant and aggressive with care recommendations for her, and put them behind schedule so they felt they could not take the time to explain things in more detail.  Maybe the doctor had seen this arrhythmia once before, treated it more casually, and the patient died.  We have no idea.  And it matters, insofar as it impacted how he presented to my friend.  Because his presence was dominating, authoritarian, rigid, and cold.

The patient-physician relationship serves as the foundation for medical care and healing.  No matter how much we talk about and try to honor patient autonomy, the power differential in this relationship remains fixed and real.  The doctor has the power and the responsibility to make the patient feel safe, to earn the patient’s trust.  On this day, in this visit, this doctor blew it, in my opinion.  It was their first encounter.  He should have taken the time and interest to get to know her, even a little, to agree on how they would work together.  If he were truly concerned about her health, knowing she had an arrhythmia (which are often made worse with stress), might he not have noticed the distress he was causing her?  Couldn’t he have given her additional care options, like referring her to a specialist within the week?  Or perhaps he could have opened the electronic health record and looked at her previous cardiologist’s last note?

He did none of these things—or at least not in any way that my friend perceived.

Further, he not only failed to establish a good relationship with her; he undermined her trust in our whole medical system.  How many experiences like this does a person have before she starts to reject the medical community altogether, ignoring symptoms of disease because she would rather deal with pain and disability than try to navigate a hostile system?  Fewer than you might think.  This is how patients end up in emergency rooms with truly life-threatening illness, where, guess what?  They get shamed again for not seeking help sooner.

It’s rather tragic when you think about it.

There is hope, though.  But as this post has already a thousand words, my thoughts on solutions will have to wait.

I hope you all had a restful and joyous holiday season.  My unplanned holiday writing hiatus lasted longer than I intended, and it’s nice to be back.  May we all reconnect with one another in more meaningful, productive, and uplifting ways in 2019.

 

 

Talking to the Opposed About Vaccines

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NaBloPoMo 2018: What I’m Learning

Go figure, I’m having conversations about flu and vaccines every day right now.  Today I described my post from yesterday to a new friend.  He stands firmly in the ‘vaccines are good’ camp.  His sister, however, does not.  Her son has autism.  After hearing about my post, he asked me what I would say to her, if she told me she would not vaccinate her child ever again.  It was a great opportunity to think and practice, and I’m grateful that he asked.  I had already thought earlier today about writing a separate post on communication around vaccines.  So here goes!

First I would tell her that I understand why she would not want to vaccinate, if she blames vaccines for her son’s autism.  I don’t know any kids with autism, but I have friends whose kids are autistic, and I see how stressful and exhausting it can be.  As a mom of kids with anaphylactic food allergies, I also know the feeling of absolute guilt for being the one who gave my kids the things that made them sick.  If I were a mom whose kid was diagnosed with autism after receiving vaccines that I consented to, and I were convinced that the latter caused the former, I would definitely want to protect my kid from anything else that might hurt him, especially anything that I have control over.

Some additional background:  We are a lot better at recognizing and diagnosing autism spectrum conditions now than a few decades ago.  That diagnosis is commonly made in the toddler years, also around the time kids have received a boatload of vaccines.  So it’s easy to see a correlation, but causation cannot be proven.  One could argue that it also cannot be totally disproven, but given the number of children who receive all of their vaccines and the very small proportion of them all who go on to be diagnosed, the evidence definitely leans away from vaccines causing autism.  That is little comfort for a family and a child affected with the disorder, who may always wonder.  As humans, we naturally look to assign blame; vaccines are an easy target.  And why on earth would we repeat actions that have previously caused us trauma, real or perceived?

This year I read an article about a mom of three.   She had vaccinated her two elder children as per guidelines.  After her third was born, however, she started to read lay literature online stoking fear of vaccines.  She had no negative experiences herself, but started to wonder, what was really the best thing to do for her family?  She decided to stop vaccinating when her son was 6 months old.  At 18 months, he got pertussis, or whooping cough.  He almost died.  She posted videos of him coughing and turning blue, captioned with a heartfelt mea culpa, urging other parents to vaccinate:

“This is whooping cough,” she wrote. “This is Brody. An 18-month-old boy. Our third child. Our first son.

“This is a mother that sees ‘anti-vaxx’ all over social media and becomes terrified. Unsure whether or not to give vaccines (even though she did for both of her girls). Terrified to ‘pump her baby with poison’ … so she stops vaccinating after six months.”

“This is pure hell. This is guilt. Guilt of putting not only my son at risk, but my community too …This is embarrassment.”

She wanted to impress the fact that she’s not “bashing” the anti-vaxx community – or blaming or judging anyone.

“The decisions I made were MY decisions. Based purely on my lack of knowledge and fear,” she said.

“This is to show the consequences of not vaccinating my child correctly.”

I wonder about her conversations with her son’s doctors.  Did they try to shame her into vaccinating when she initially expressed a desire to stop?  If so, could this have just made her more resistant?  It could easily look something like a conversation that I would bet happened all over our country today:

Doctor:  Have you gotten your flu vaccine yet?

Patient: I don’t do flu vaccine.

Doctor: Seriously?  Why not?  It’s perfectly safe, you know, and tens of thousands of people die every year from flu.  If you don’t get vaccinated, you could pass it on to everybody you know.  Aren’t your parents elderly?  Don’t your kids have asthma?  You’re putting them at risk for serious illness or death, you know that, right?  And you don’t get flu from the vaccine, that is a total myth.  (Insert list of facts and evidence for benefits of flu vaccine here.)  Really, you should get it (suppressing eye roll).

Patient:  No, no thanks.  Can I go now?

I see and hear my colleagues complain all the time about vaccine-resistant patients.  When they are particularly tired or moody, they can get judgmental and even a little mean.  I understand.  It’s frustrating to watch people we care about making choices we think are against their best interests, especially when it also puts the community at risk.  I fear for my kids if their classmates are not vaccinated—both of my kids have asthma that’s triggered by respiratory infections.  Even if our whole family is vaccinated, they are still exposed to hundreds of snotty, sneezy, coughing faces every day at school.  Flu season is essentially six months long, most of it when we are all stuck inside basically slobbering all over one another.  High. Risk.

But does it really help for me to come at my patients with my ‘advice’ before I understand the origins of their decisions?  What are my assumptions about them when I do that?  Some patients claim science as the basis of their refusal; others admit that it’s totally irrational.  Regardless, how can I best conduct myself?  Here is my current approach:

Cheng: Do you do flu vaccine?

Patient: No, not really.

Cheng: Can we talk about that?

Patient: Do we have to?

Cheng: I would really appreciate it.  I won’t try to pressure you, I just want to understand your rationale.

Patient:  Gives their reasoning.  If it’s like my friend’s sister above, or I otherwise understand that they are resolute in opposition, I thank them for sharing, shift to strategies for illness and transmission prevention (see yesterday’s post), and ask permission to talk again next season.  This happens in a minority of cases, actually.  Most often they say something like, “Well, I just don’t really think about it, I feel like I don’t need it, I think it’s strange that it’s recommended every year, it doesn’t really seem to work from what I hear, and what’s the big deal about flu, anyway? …Do you really think I should get it?”

Cheng: Yes, I really recommend it.  Can I tell you why?

Patient: Okay, sure.

This is when I go through all the evidence that I reviewed yesterday and the rationale above.  If I know something meaningful to them that relates, I make sure to highlight the connection.  At the end I make sure to reiterate that they are free to vaccinate or not; I am honestly unwedded to a particular decision. I invite them to consider and let me know, or just show up to a pharmacy clinic if they decide to get it.  Most people are appreciative of the time spent; many say they learn something they did not previously know.  We end the conversation at least with no hard feelings, and often with positive ones (at least on my end).

It occurred to me this morning, what is my primary objective when I conduct these conversations this way, coming alongside my patients rather than coming at them?  Initially I thought it was to keep people healthy, to prevent death, serious illness, and suffering.  But now I think my primary objective is actually to cultivate our relationship.  I usually have this conversation with new patients, because if I know them already then I know their vaccine patterns and I don’t have to ask, “Do you do flu vaccine?”  If they refused last year I can simply start with, “Can we please talk about flu again?”  When we are new to each other, the way I present sets the tone for our relationship and has an outsize impact on patients’ receptivity to my advice.  The flu vaccine conversation is a prime opportunity to prove that I can listen to, empathize with, respect, and honor their values and autonomy.

On the contrary, when I come at them, bent on convincing them to vaccinate now, what is my primary objective?  Thinking of other times I present this way, if I’m being honest, I’m just trying to prove I’m right and win an argument.  I don’t think that approach has ever really helped anybody.