A Letter to Our New Residents

To My New Colleagues,

Now that you have made all the necessary introductions, met one another and your significant others, learned the names of a few key faculty, attended a small reception with the nurse managers and administrators, and identified the respective locations of your on-call room, the hospital Cafe and the rest rooms, it is time to get down to the business of your education and acculturation into the tribe of Medicine.

Perhaps I am being too optimistic in thinking that my perspective will be of use to you in your efforts to become good physicians.  But over the past 20 years, I have had the privilege of observing the professional activities of a staff numbering more than a thousand.  The resulting impressions encompass the very best and the very worst of what we can do in the execution of our responsibilities to the sick.  These have mingled with my own introspection about the habits and practices that, in my opinion, conduce to success or failure.  If after understanding my methodology you are still interested, by all means, read on.

Let’s begin with Osler, who famously noted:

“He who studies medicine without books sails an uncharted sea, but he who studies medicine without patients does not go to sea at all.”

Since the father of American Medicine wrote those words more than 100 years ago, much has changed (team-based care, an explosive increase in specialization, advanced imaging, the EHR) but much has not.  The aphorism references two potential errors, and by inference two important practices for us all. I will take them in reverse order.  When he wrote about studying “medicine without patients” he was evoking an image of the trainee spending day and night poring over the great works of Medicine and Surgery as they stood at the end of the 19th century, perhaps by candlelight, but away from the wards and actual contact with patients.

I’m not sure this is a realistic concern nowadays.  However, it does happen to be true that house officers spend far more hours in the EMR than at the bedside, and are increasingly likely in their case presentations to jump directly from the chief complaint (“cough and dyspnea of several days’ duration”) to the chest CT interpretation with barely a mention of the history or physical examination. And thus much of the point of seeing actual patients is lost.  I am not suggesting that residents needs to report these data with the detail of a Da Vinci portrait; a few well placed brush strokes generally suffice to reflect the relevant positives and negatives of the H&P, suggesting along the way the diagnoses she has considered and discarded on her way to a working hypothesis.  

Osler’s first point — that the physician who studies Medicine “without books sails an uncharted sea” — gets too little attention, I think. New physicians will, whether they know it or not, commit themselves to one of two sects.  Membership in one of these puts the physician on the path to ongoing improvement, driven by intellectual curiosity, a habit of finding a question in almost every encounter addressed by an efficient query of the literature.  Paradoxically, the more knowledgable the physician, the more questions she finds.  Members of this sect become ever more knowledgable over time.  Critically, they are inclined to abandon previous approaches to diagnosis and (especially) treatment, based on evolving data and expert consensus.  Ten years after training they are better physicians than they were at the completion of residency.  Members of the only other sect avoid all of these activities.  Their practice is moored to the last thing they learned in training, and they will become progressively less effective over time.  Paradoxically, they will attach almost religious importance to their “clinical experience” which one commentator has described as the “opportunity to make the same mistakes over and over again with increasing degrees of confidence.”

There is another Osler quote which is at least as relevant:

“The good physician treats the disease; the great physician treats the patient who has the disease.”

Ah, humanism! Of course, you think.  We had a course on that.  “Fortunately,” you think (and I’m guessing this, because I thought it too) “I’ve got this.  I like people.  I went into Medicine to help people.  And I’m a good communicator.” 

Here are the realities.  Being empathetic and communicating empathy are entirely different things.  When asked (as millions of patients are in federal surveys ) how good their physicians are at being empathetic, making them feel listened to, and explaining their condition and treatment, wide variation is present. And of course, half of all physicians are below average in communication.  (Think about it.)

Empathetic, effective communication with our patients is the basis for trust, and trust is critical.  Trust is correlated with patient activation and adherence to the plan of care.  Trust is therapeutic for the patient and itself relieves suffering.  And trusting relationship with patients is nurturing for us as physicians. 

What I want you to know about effective physician-patient communication is that it does not take more time, but does require that we learn some skills.  The biggest mistake we can make about it is to assume that we can’t get better. 

When you first meet your patient, postpone for a moment the impulse to treat him like a puzzle to be solved.  Introduce yourself, of course, and cleanse your hands in front of him. Then establish connection by doing what a “civilian” would do — acknowledge his situation. You’re seeing a person in the ED who came with a fever, cough and a little shortness of breath.  They’re only there because they became so scared that the idea of not coming to the hospital (and maybe dying at home, alone?) was even more scary than the idea of coming in.  Often patients will tell us this.  

It has been found that we ignore 90% of “empathy opportunities” — times when patients reach out to us, with words or otherwise, and signal their distress.  Maybe we say something — “You look concerned”…or…”you know, most people in your situation would be frustrated”…or maybe we just let it go.  Don’t just let it go.  At the least, acknowledge the discomfort of being thrust into the role of “patient” — “I’m sorry you’ve had to wait in the ED so long…Are you warm enough? We can get you a blanket.”

Can we talk about jargon?  

The embryology of jargon in medical training fascinates me.  I have seen a student 6 weeks into medical school address a standardized patient as follows: “Mr Paterson, do you mind if I auscult your precordium?”

What is this about? Several things, I think. First, words have power.  Using the language of Medicine identifies us with our tribe.  We feel confident.  (Watch how the jargon quotient skyrockets when a patient challenges our diagnosis!)  Second, jargon is just easier (in the short run).  It’s hard to do all this translating!  

But this is very important.  The use of medical jargon confuses our patients, increases their anxiety and distress, interferes with achieving collaboration about their medications or diet or follow up, and it expresses a lack of caring.  (Really, you say?  Consider what it takes to detect jargon and avoid it.  We have to keep seeing things from the patient’s point of view.  And that, of course, is exactly what empathy is.)

When asked, a quarter or more of patients tell us that we don’t always listen to them, or listen well enough.  Of course, patients cannot literally know how much we’re listening, since that is an interior mental state.  It’s about the signals we send.  Do we sit down?  How soon do we interrupt their initial story?  (Despite our worst fears, studies tell us that patients will only speak for 2 minutes if provided the opportunity to tell us what they feel we need to know.)  Finally, the best communicators elicit the patient’s concerns in a way that signals genuine interest in meeting her needs: “What questions do you have?”  This is an open-ended question.  It is generous in a way that do-you-have-any-questions is not.  It’s so simple, but makes so much difference.  

Try it now: What Questions Do You Have?

There’s more to communicating well, expressing empathy and “treating the patient who has the disease.”  In fact, we have a course here at Northwell on Relationship Centered Communication for all physicians.  I hope to see you in class this year, and in our conferences, and of course on the floors!

With warmest wishes that you find meaning, fulfillment and joy in your chosen profession,

Michael B Grosso, MD

  

When do we get EMR 2.0?

In a recent New York Times opinion piece, nurse educator Theresa Brown and internist Steven Berman suggest that physicians and nurses join forces to oppose their common pain point - the electronic health record.

Some respondents to this article, which appeared on New Year's Eve, were skeptical that "one thing" - the EMR - could possibly cause so much disruption and stress.  Presumably these commenters never worked in healthcare.  As odd and simplistic as it may seem to an outsider, yes, the electronic charting systems in most hospitals frustrate clinicians, and contribute materially to workplace stress, anxiety, depression and burnout.  The consequences are borne not only by themselves - though this would be reason enough for action.  They affect their families, the hospital organizations for which they work and, most importantly, the patients who rely on us.

No one disagrees about certain advantages of an EMR over paper.  Sitting in my living room, where I am now writing on an early Saturday morning, I can review the chart of any patient that requires my attention.  This "portability" also makes it possible for the doctor and nurse to be charting at the same time,  putting an end to what was a persistent question in the world of paper records: "damn it, who has the chart?" And, of course, legibility is no longer an issue.  In this regard, a whole category of medical error relating to misunderstood doctors' orders has been eliminated.  No longer is there a need to worry that similar looking hand-written abbreviations (dubbed "dangerous" by The Joint Commission) will be misinterpreted.

Additionally, the new systems presumably improve safety by allowing for "alerts" that prompt us when we enter a medication to which the patient may be allergic, or at the wrong dose, or that might interact with another.  These have been somewhat helpful, though false alarms plague the process.

But separate from the inefficiencies pointed out by the authors - or maybe interacting with them - are at least two other problems with current EMRs.  The first is the "cut and paste" issue.  In an effort to claw back a little time (so as to be able to spend at least a few moments with the actual patient), physicians will liberally move text from one note to another.   The problem is that this can create inadvertent errors in sequencing - as when yesterday's "yesterday" is no longer yesterday when written in today's note.  Or when it is noted, accidentally, for four days in a row that "the patient is going to cardiac cath today."  This particular problem creates a chart that is untrustworthy - an issue for patient care to be sure, and also for risk management and regulatory compliance.

There is an even larger issue with the structure of most EMRs.  To the non-physician, the only way I can think to describe it is as a Picasso effect.  You know those paintings where the lady has two eyes on the same side of her face, or a nose coming out of her shoe?  In yesteryear there was a section of the physician's note where he set down his diagnostic impression, usually in the form of two or three sentences that summarized the salient symptoms, physical findings and study results in a way which made the case for one or several alternate diagnoses.  This was the distillation of his medical detective work, and his thought process was laid out for his colleagues to appreciate.  To extend the metaphor, this was the coherent picture of the patient's situation.

This has vanished.  In its place is a set of fields for "problems" attached to ICD.10 codes.  It is the clinician's job to atomize his actual "impression" so as to fit this format, which more often than not obscures the diagnostic thought process.  More fundamentally, it may interfere with diagnostic reasoning itself.  Diagnostic error is hard to measure, but it is hard to image that this is not increased by a system of record keeping that discourages narrative.  Author Joan Didion famously said, "I write entirely to find out what I'm thinking."

Perhaps I am being too optimistic, but I do believe that the current problems will be solved. The question is when. The VA system's EMR is reportedly much better liked by its users than any others, and it's an old system by IT standards.  We have to insist on better.  Our patients deserve no less, and our profession, our wellness and our very lives hang in the balance. 

Ref:
1.  T Brown and S Bergman, "Doctors, nurses and the paperwork crisis that could unit them," NY Times, December 31, 2019
2.  J Weiss and P Levy, "Copy, paste and cloned notes in electronic health records," Chest 2014, 145(3): 632

Candle in a Breeze? HPV, Measles and the Public Health in an Anti-science Era

Imagine this.  You tune in to the evening news and hear that a new virus has been discovered.  What's more, it has infected over 80 million Americans.  Is there good news?  Just that most people don't know they have it, simply because they have no symptoms at all.  On the other hand, this new virus will cause 300,000 precancerous conditions in women, and every year 31,000 men and women will develop one of six kinds of cancer caused by this infection.  This year, next year and each one after. 

I believe that mayhem would follow.  And then a call that government and medical scientists DO something about it.  

As it happens, this is not science fiction, except for the part about the virus being new.  Rather, this is a description of the human papillomavirus, or HPV, discovered in 1956 and first linked to human cancers more than 30 years later.  In 2006, a highly effective vaccine against HPV was licensed by the FDA.  It was felt to be so important for cancer prevention that a year later the federal Centers for Disease Control and Prevention (whose Advisory Committee for Immunization Practices writes the national guidelines that undergird vaccine use in our country) called for the addition of HPV vaccine to the list of recommended childhood immunizations at the 11 or 12 year old visit.  


Why are cervical cancer and other HPV malignancies still with us?  For that matter, why is measles making a comeback after all these years? In the first instance, it is because uptake of the vaccine in the US has been unusually slow.  In the latter, there is actual backsliding, with previously high rates of immunization eroding in pockets from New York to the Pacific northwest. Other countries, like Australia, are on track to completely eliminate HPV cancers in less than a decade.  But not us.  Why? It's not lack of access.  In fact, in communities like ours across the country, those who a economically disadvantaged are MORE likely to be up to date with their immunizations, including these.  Those at greater risk - for HPV, measles and other preventable infections - are the well off and the (otherwise) well educated.  

Pediatricians like me approach the problem of immunization with great empathy for parents, who face a terrifying array of viewpoints in the marketplace of ideas.  "Getting natural diseases is better than immunization." (This is such an odd idea.  Behind my wife's ancestral, 19th century home in Riverhead there is a small, lovely graveyard.  We walk there sometimes and linger at the tiniest tombstones, perhaps a dozen in all. They belong to those who did not survive infancy due to fatal infections like diphtheria and whooping cough that were once a commonplace in our towns.)  "Vaccines overwhelm the immune system - especially when we keep adding new ones." (Children immunized now receive far FEWER antigens - the vaccine building blocks that create immunity - than they did in 1970, even after accounting for the longer list of conditions prevented. This is due to continuous improvement in vaccine design.)  


"Vaccines cause autism." This deserves more space than we have here.  In the 90s, concerns were raised about a widely used mercury preservative - the so-called smoking gun. Experts noted that the form of mercury was different from the biologically active kind that we should worry about.  As a cautionary measure, the mercury was removed in 1999.  However, the reported prevalence of autistic spectrum disorders did not decline thereafter - it increased.  Then, in 1998, the Lancet published a paper by Wakefield et al describing 12 children with GI symptoms and autism following administration of MMR vaccine.  At first thought to be provocative, and then just bad science, it was disclosed by 2010 to have been a conscious fraud, intended to support a malpractice claim by a UK firm.  His medical license was revoked as a result. Since that time, 56 studies have been published internationally evaluating the hypothesis that vaccines are linked to neurodevelopmental conditions like autism, focusing on the MMR-autism issue and others.  None of the 56 showed an association.     

Let me be quite clear on one point.  There are many controversies in Medicine - on diagnostic tests, on the best treatments for a host of conditions...but immunization is not one of those controversies.  Among experts in pediatrics, infectious diseases and public health, the safe and effective vaccines listed by the ACIP and endorsed by the AAP and AAFP as recommended for all healthy children constitute a vital strategy for keeping our patients from harm.  

Many have noted that new information is not of interest to those who are most staunchly opposed to childhood immunization, unless it reinforces their pre-existing bias - which is essentially the definition of a "cult."  Where have we seen this before?  This is a matter not for immunologists to decipher, but for social scientists.  It is about an unravelling of trust - in doctors, in the methods and practitioners of science, and in the legitimate functions of governments in protecting the public welfare.  

It is certainly about libertarianism, at least in some locales.  Politicians have gone on record with the position that the science doesn't even matter.  Instead, they argue, this is about the parent's right to be wrong.   

Some feel that the most important contributor to skepticism is incomprehension.  The notion that association between two events may not mean causality is just too abstract-sounding to be trustworthy, especially in an era when scientific literacy is in decline.  Two decades ago, Cornell astrophysicist Carl Sagan expressed his serious concern that we were entering a new Dark Age.   In his last book, "The Demon Haunted World - Science as a Candle in the Dark," this is what he said:

“I have a foreboding of an America in my children's or grandchildren's time when...people have lost the ability to set their own agendas or knowledgeably question those in authority; when, clutching our crystals and nervously consulting our horoscopes, our critical faculties in decline, unable to distinguish between what feels good and what's true, we slide, almost without noticing, back into superstition and darkness... 

The dumbing down of America is most evident in the slow decay of substantive content in the enormously influential media, lowest common denominator programming, credulous presentations on pseudoscience and superstition, but especially a kind of celebration of ignorance...”

God save our children.

  

What To Read Now

Here are a couple of items currently on my night table.  I think they're worth buying.  (Or stop by my office and I'll lend you a copy...IF you promise to give it back!)


Make It Stick: The Science of Successful Learning
Peter C. Brown, Henry L Roediger III, and Mark A McDaniel
Harvard University Press, 2014

I am a huge devotee of the counter-intuitive. During our resident teaching conferences I like to ask questions like this: “When evaluating a young child with fever of unknown source, should you be more reassured when Tylenol reduces the fever than when it doesn't ?”  (The right answer, by the way, is “no”).  Scientific investigations that merely confirm what most people would guess are rather boring, and generally speaking less than influential on clinical practice.  It is the startling study result that grabs us.

In that spirit, Brown and colleagues have put together an engaging tour of learning theory.  The sub-title could have been “Everything you thought you knew about learning is wrong.”  Who would quibble with any of these truisms… that it is helpful to reread the textbook chapter (or your notes) before a test… that making learning easy and fun also makes it more effective…that when learning math, it’s best to really nail down one skill before moving onto the next….or that when memorizing, drilling the same material over and over is the ticket, because practice makes perfect? 

According to the authors, each of these tropes is simply myth. 

To the contrary, studies tell us that a state of moderate performance anxiety consolidates learning more effectively than a state of ease.  This is why listening to a speaker from the back row of the lecture hall transfers far less information than case-based learning (and why “lecturing” is forbidden at the Zucker/Northwell School of Medicine).  Additionally, education science tells us that while combining disparate skills in active problem solving may seem more chaotic than tackling one new discipline at a time (Anatomy, Physiology, Pharmacology), the former gets objectively better results including more retention of new knowledge and greater competence in applying that knowledge in context. 

Among the tenets of education at Zucker is that “assessment drives learning.”  In a sense, this is the counterpoint to those who oppose too much testing, complaining that it encourages “teaching to the test” and stifles creativity.  Once again, the evidence says otherwise.  In well-conducted comparative studies, students who were subjected to low stakes testing throughout a course (the pop quiz) ended up performing significantly better in the final exam than a comparison group whose experience was the same in all other respects.

The authors note that, when asked, even highly motivated students don’t necessarily prefer the more effective methodologies.  It seem that introspection doesn’t always provide the best answers when it comes to our own psychology, which is to say that the Socratic maxim “know thyself” is easier said than done.    

*********************************


Leaves of Grass
The First Edition - 1855
Walt Whitman
Barnes and Noble Books, 1997

A point of clarification.  I’m not actually reading Leaves of Grass for the first time.  Rather, I’ve never stopped reading it since I was 21 and took an upper level course in the American Transcendentalist movement focusing as one must on the works of Ralph Waldo Emerson (author of “Self-reliance” and so many other essays); Henry David Thoreau (“Walden”) and, of course, the greatest American poet of all time and self-stylized bard of the New World, Walt Whitman.  

Pop quiz: how many collections of poems did Whitman write?  Oddly, the answer is just one.  This one.  Leaves of Grass, first self-published in 1851, grew over four decades from a thin folio of a dozen poems to over 400.   The first poem (in almost every sense) is “Song of Myself”.  It is the gateway, not only to this organic collection, but to Walt Whitman, a mythologic figure wholly created by Walter Whitman: poet, Civil War orderly,  newspaper publisher and (as all residents of our Town should be required to know) Huntingtonian.  Beyond that, it is a gateway to the 19th century movement known as Transcendentalism.     

When first published, Leaves of Grass drew little critical attention, except from those commentators who derided Whitman’s meandering style and loose poetical structures.  Were it not for the fact that a copy arrived in the hands of the deeply respected Emerson, Whitman may never have achieved an audience.  Most were nevertheless baffled by the elder’s effusive praise of the new poet and his claim that this was an original, authentic, sinewy and quintessentially American voice.  

What were the Transcendentalists trying to say, exactly?  Theirs was a protest movement, against European academics and tastes, against philosophies and aesthetic constructs that put Man at arm’s length from the natural world and from personal experience.  Transcendentalism was an American romantic movement that eschewed “authority” in favor of personal connection with nature, and unmediated judgments of what is beautiful and good and true.  It is no wonder then that Emerson was thunderstruck from the first lines of Whitman’s first work, “Song of Myself”…

I sing myself 
And celebrate myself
And what I assume you shall assume,
For every atom belonging to me as good belongs to you.
I loafe and invite my soul,
I lean and loafe at my ease…observing a spear of summer grass.

In a world mediated not so much by academic authority or social convention as by Instagram and Twitter, the idea of stripping away the extraneous to achieve true communion, direct experience and self-knowledge seems as topical, and as attractive, as ever.

What I have against antibiotic stewardship

The deployment of initiatives under the banner of "antimicrobial stewardship" has been endorsed by an impressive array of organizations, including the American Academy of Pediatrics, American Society of Health-System Pharmacists, Infectious Diseases Society for Obstetrics and Gynecology, Pediatric Infectious Diseases Society, Society for Hospital Medicine, and the Society of Infectious Diseases Pharmacists.  How could any thinking person be opposed?  I'm not, actually.  But here's where I think they may go wrong.

Hospital-based antimicrobial stewardship programs (ASPs) benchmark their success against two goals - cost reduction associated with decreased drug utilization, and, aspirationally at least (because it is a difficult outcome to measure) reduction in the spread of antibiotic resistance.   

Both outcomes are consequential.  At the institutional level, effective ASPs can save $200,000 - 900,000 annually, according to the IDSA.  And antibiotic resistance is a problem of global proportions.  In the US alone, over 2 million individuals are sickened by antibiotic-resistant infections and 23,000 die each year (CDC, 2013).  

Here's the problem.  Neither hospital cost savings nor the global threat of a "post-antibiotic era" are compelling to the practitioner at the bedside or in his examining room, whose only goal is to do the best, right thing for the patient in front of him. And these are the individuals, at the end of the day, whose decisions matter the most.

That's why, in putting together a conference for our Family Medicine residents on appropriate antimicrobial use in children, I didn't mention cost savings at all.  It is also why I talked about the resistance problem not as a headline, but as a footnote.  For the practitioner, it is most important to understand that the problem of antibiotic over-use is one that impacts each individual patient.  Over-use errors, at bottom, are no different than other kinds of medical error.  Though outcomes vary, we risk serious, avoidable harm to our patients.  This is an issue not of economics but of standards-of-care and ethical practice. The message - once again - is primum non nocere.

Complications of Non-indicated Antibiotic Therapy

• Allergic reactions
• Stevens-Johnson Syndrome
• Toxic epidermal necrolysis
• Antibiotic associated diarrheal illness
• C. difficile colitis
• Alterations in the gut microbiome
• Obesity and Type 2 diabetes
• Others 

Why do physicians make these errors?  

The literature points to some common themes.  In the February issue of the journal Pediatrics, Poole and colleagues report on antibiotic use in US emergency departments.  While they find errors across the board, there is a clear disparity between treatment in pediatric EDs (those that treat mostly children) and general emergency rooms.  The latter, being far more numerous, are the site of care for more than 80% of children seeking emergency treatment.  The authors' conclusion is that more children receive antibiotics for conditions not warranting such treatment if they are seen in a non-pediatric ED.  And when antibiotics are warranted, they are less likely to receive medication consistent with expert guidelines when seen in these "adult" EDs.  

The authors go on to speculate that differences in training and experience fuel these disparities and others.  This is not surprising.  Previous studies have demonstrated similar differences in treatment for children with asthma, croup and head injury.  

Nor is the knowledge problem limited to children and Emergency Departments.  A Dutch study evaluating outpatient care by 84 general practitioners found that individual physicians over-treated at significantly different rates (Akkerman, 2005).  Logistic regression analysis found that practitioners who had practiced longer AND scored poorly on a knowledge test about respiratory tract infections were most likely to over-prescribe when compared with their peers.  Perceived time pressure and contact with pharmaceutical salesmen also increased risk.   

As songwriter Todd Rundgren wrote, "Love is the answer."  When it comes to avoiding errors of antibiotic overuse and avoidable harm to children, medical knowledge and keeping up to date with the literature seem to run a close second.


   

The family is unrealistic: now what?

In hospitals everywhere, staff members experience moral distress when they observe medical interventions that contribute to their patient's suffering without a clear, counterbalancing benefit.  Many authors have explored the problem of differentiating between prolonging life and merely prolonging the dying process.  The care team approaches the decision-maker - the son, the daughter, the spouse - with recommendations that unhelpful interventions be stopped, or at least not started. Mechanical ventilation, dialysis, CPR, vasopressors.  Too often, these discussions are understood to have failed.  The reason?  "The family is unrealistic."

I think we make a mistake when we treat this observation as a bona fide conclusion, rather than as an invitation to explore the situation more deeply.  Here is a short list of issues that may contribute to a stalemate, frustration and distress.  Consider this a differential diagnosis, or maybe a checklist for managing "unrealistic" families:

1.  We're better at sharing information than we are at communicating.  "We told the family the dad is experiencing septic shock with a rising creatinine and that his respiratory status is getting worse, but they're not being realistic.  We did let them know that with his labile blood pressures, he's not even a candidate for dialysis."  It is easier to run the problem list than it is to say that dad is dying. More on this below. 

2.  We say we're interested in understanding the patient's "goals of care" but we don't always mean it.   We use the term "goals of care discussion" so often these days but I'm afraid that many of us have lost track of what the concept entails.  The point, of course, is to understand what matters to the patient (often expressed by the patient's decision-making agent).  Is it better to be on a ventilator than dead? Or on dialysis, or in the hospital?  Put another way, is the goal of dialysis or a ventilator to allow for recovery, and a return to some previous level of function?  Or to extend life for a month, or a week?

If there were one-size-fits-all answers to such questions, goals-of-care conversations would be pointless.  It seems to be easier to conclude that we're doing the right thing when patients and families make the decisions that we would make for ourselves.

3. Our frame of reference is completely different.  Doctors and nurses caring for patients with advanced illness expect that these patients will die, too often after useless invasive treatments.  The mortal condition of these individuals is an inescapable reality.  The family, however, has faced crisis after crisis for dad.  Hospital admissions, stays in the ICU, rehab and, inevitably another admission.  They have probably faced grave prognostications before, and probably more than once.  In contrast to the staff's assumption that mortality is 100%, the family's empirical experience is of 100% survival, so far.  The "unrealistic" family members are being good scientists.

4.  We sometimes treat families as our adversaries and not as our partners in care.  Once we decide that our agendas are not aligned, a vicious cycle ensues.  We see it as our mission to help the family see how "hopeless" the situation is.  (Of course, if it is our purpose to limit life-extending treatment, the logical inconsistency here becomes quite obvious.  If death is that imminent, the family asks, why the need to make hard decisions?)  The resulting dialogue represents the antithesis of empathic communication with a son, daughter or spouse facing the loss of a loved one.

Fortunately, there are correctives for each of these problems that may help us provide better care for the dying.

First, we need to use proven strategies to ensure that we are communicating effectively.  Typically, we think we're doing so when we sit down with the son or daughter and methodically list the issues - the blood stream infection, the breathing problems, the cardiac function, how the kidneys aren't working, the test results, what we're doing and what we propose to do.  We (and I am starting with myself) can feel very self-satisfied by our lucid explanations.  But are we effective?  A body of evidence tells us that we need constant check backs to ensure that we and our patient are on the same page.

In the Northwell Relationship-centered Communication program, that process is called an ART loop, for Ask-Respond-Tell.  "We found a Staph blood stream infection in dad with this morning's lab results.  What do you know about Staph infections?"  Also called a "knowledge biopsy," such questions engage the listener, identify his level of understanding as well as misconceptions, and set the stage for more information sharing.  "That's right.  They are serious.  Even without other health problems, many individuals go on to die after this kind of infection has been found."   

Second,  we need to check our biases at the door.  Is there anyone who can help us?  Yes.  Probably the most important role of the Ethics consultation service is to help the clinical team find a path toward doing "the right thing."  Rather than answers, Ethics consultation, when effective, helps clinicians ask better questions.  These are questions not about what can be done (praxis), but what should be done (ethos).  Ethical considerations of beneficence (acting in the patient's best interest), nonmaleficence (avoiding harm) and respect for the patient's autonomy inform such deliberations.

Third, we need to recognize that end-of-life decision making is a process.  The gap in perspective between patients and health professionals may seem unbridgeable.  Sometimes, just recognizing this out loud is helpful.  We should also keep in mind that in the span of just four decades we have done a complete about face as regards our attitude toward life extending treatment.  When the Karen Ann Quinlan case was litigated in 1976, it was the view of the hospital that withholding or withdrawing life extending treatment was ethically indefensible, and, as important, that families had no role in making decisions of this kind.  Now we empower families, but when there are disagreements, most often it is the patient's healthcare agent who is arguing for aggressive treatment, while doctors and nurses urge a shift toward comfort care.

Finally, we need to build partnerships with our families.  An us-versus-them attitude can be understandable, but it is rarely helpful.  A specific strategy for communicating in a way that is compassionate and therapeutic was highlighted recently by Joshua Lakin, a Palliative Medicine specialist at Dana Farber.  In his Perspectives piece (JAMA Internal Medicine, Dec 2018), he notes:

  All too often, the patient and the medical team land in a tug of war. On the one side stands the patient and their family, fighting to live. On the other side stands the medical team, trying to convince the patient that he or she is inevitably getting sicker. In a tug of war, neither side can imagine easing its effort. The patient fights to stay positive. The medical team, similarly stuck, pulls the patient to simply accept the prognosis.   

How do we avoid this impasse?  Lakin suggests pairing our hopes and worries.  "I hope that dad is able to get better, as he has in the past.  But I am worried that this time he won't make it out of the ICU, and that he may only have a few weeks to live."  Using "I" statements in this way gets us out of the trap of having to be certain about the future, which we never are.  The prognosis is not a statement of fact - it is just our medical opinion.  Additionally, this approach helps reinforce our empathic relationship with the patient and family.  We want the same things, the same goals. 

Communicating medical facts in ways that families can digest, understanding their goals of care, and finding ways to sustain relationship and to collaborate with families -- all of this is good for families.  Critically, these tools help us provide the best possible care for the dying, but also best care for ourselves.

Relationship, Humanism and Placebo

MEDICINE IS AT LEAST AS OLD as recorded history and almost certainly much older than that.  At first glance, its persistence over millennia is difficult to understand, given that until the last 100 years — with the exception of a few useful herbs — our therapies have been more or less useless and have surely hastened the death of some.  How can a profession that helped hardly anyone survive at all, let alone achieve (at times at least) the respect and gratitude of society? It may just be that the best explanation for this paradox is to be found in a phenomenon currently discussed mostly as a confounder of scientific studies and, at its worst, a violation of the physician’s responsibility to truth telling, at odds with basic ethical standards — I refer, of course, to the so-called “placebo effect.”

A recent article in the New York Times Magazine reviews the current science of the placebo and the remarkable work of researchers who have identified not only the fMRI signatures of the sugar pill, but also genotypes that are predisposed, by way of their neurobiology, to the benefits of placebo.   We are reminded, as well, that placebo means much more than a pill.  Rather, it is the totality of ritual and social context combined with trust, expectation and caring that link the ancient shaman with the modern day white-coat-and-stethoscope.  The "placebo effect," understood in this way, is deeply linked to medical humanism - to the personal encounter between the ailing patient and the compassionate healer - and predates by millennia our current understanding of physiology, pathology, pharmacology or molecules. Times author Gary Greenberg (“What if the Placebo Effect isn’t a Trick,” NY Times, Nov 7th) talks with researcher Ted Kaptchuk, head of Harvard Medical School’s Program in Placebo Studies and the Therapeutic Encounter:

“Kaptchuk may wish ‘to help reconfigure biomedicine by rejecting the idea that healing is only the application of mechanical tools.’” he writes. “He may believe that healing is a moral act in which ‘caring in the context of hope qualitatively changes clinical outcomes.’ He may be convinced that the relationship kindled by the encounter between a suffering person and a healer is a central, and almost entirely overlooked, component of medical treatment…” 

Although Greenberg makes no mention of the current national efforts to measure patient experience of care, it is impossible, I think, not to think of this connection.  We know from a host of studies how the physician-patient relationship drives clinical outcomes - here is just one more piece of the puzzle, linking the healing hand to molecules and brain biology and extending our understanding of the mind-body nexus.  A growing interest in the patient’s experience has been spurred on in part by public reporting of HCAHPS metrics.  In my view, these measures have been both a boon and an obstacle to real progress toward a renaissance of humanism in healthcare.

Certainly they have been effective in getting the issue onto the leadership agenda at every institution and at every level.  This, in principle, paves the way for resourcing and prioritizing an important dimension of healthcare.  On the other hand, the corporatization of “Experience” runs the risk of being reductionistic, encouraging quick wins, and critically, confusing the measurement with the thing measured, as though staring obsessively at the thermometer is some kind of substitute for throwing another log on the fire.

Here is another thought.  The environment, the surround, the context of healing were understood from pre-historic times to be critical to the encounter.  We no longer deal in robes, body paint or headdress as the shaman might have.  But why do we think of the long white coat as any less important?  Maybe we should be studying this.  Just maybe, wearing the crisp lab coat and sitting at the bedside are as important to the health of our patients as selecting the right antimicrobial.

I do fear that contemporary physicians see all this emphasis on relationship, caring and, yes, the placebo effect, as at best a nicety for which we don’t have time, or at worst, an irrelevance in an age when patients receive care from “teams” whose members are, by definition, interchangeable.  After all, the implication that shamanism, placebo and relationship matter is deeply disturbing, or at least it should be.  Why? Because we have devised mechanisms for healthcare delivery that have systematically dismantled all of this.  The work ahead of us to put Humpty Dumpty together again is truly daunting.

Nonetheless, there is a reality behind these notions that we ignore only at our own peril.  And the benefits of making headway toward truly humanistic healthcare - and a more enlightened approach to the phenomenon of “placebo“ - are considerable, not only for patients but for ourselves as well.  I like the vision and the metaphor offered by a Times reader, responding to Greenberg’s piece.  Here is what he said:

Imagine that you are the sole survivor of an airplane crash in the desert.  You look out over the harsh landscape and despair.  Then you spot a shack with a display that says, “Licensed desert guide.” Instead of despair, pain and fatigue, you now experience renewed energy and hope.  In regard to others, you are more open to influence and will (sometimes) do what is needed to get better.
In my own area, psychotherapy, the office and the diplomas on the wall do the heavy lifting.  Every culture legitimizes healers, and their presence has been valuable whether they dress in frock coats or feathers and whether they bear insights, potions or scalpels.  They give problems a name, describe a course and provide comfort and community.  Trusting your best chance is neither irrational nor allowing yourself to be fooled.

          — Robert A. Karlin, associate professor of psychology, Rutgers University, NJ