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

Pathways to Compassionate Care

"It is easier to act your way into a new way of thinking than it is to think your way into a new way of acting."

This aphorism, noted by UCSF physician Christopher Moriates in his insightful essay "A Few Good Words," serves to justify one approach to improving healthcare communication.  The idea, he admits, seems too simple to be important - that we change a small behavior as a first step to opening ourselves up to our patients, and to creating greater connection.  Specifically, he recommends that we simply stop asking patients "Do you have any questions," and ask, instead, "What questions do you have?"

The use of open-ended questions like this is just one of a whole toolset of "micro-skills" that are shared as part of our day-long Relationship-centered Communication (R.C.C.) course, designed specifically for Northwell physicians in collaboration with the Academy for Communication in Healthcare.

The curriculum is predicated on several assumptions.  One is that while attitudes influence our behavior, the converse - that deliberate actions shape attitudes - is also true.  A second is that we feel empathy for our patients more often than we express it.  It follows logically that patients are deprived of the emotional benefits of feeling cared about whenever their physician is experiencing - but not communicating - this state of mind called empathy.  (In Buddhist thought, the same state is described as "compassion."  More on that shortly.)  The prescription brought to learners in the RCC curriculum addresses this gap with specific empathic behaviors - described by terms like reflection, legitimation and exploration - that physicians can adopt in their day-to-day practice.

Legitimation, for example, is a technique whereby the physician "legitimizes" the patient's emotional relationship to his problem - "I understand.  Most people with chest pain like that would be afraid..."

Yet a third assumption is that there is a need for physicians to create "relationship" and communicate caring irrespective of how we actually feel about the patient. Most seasoned practitioners admit that we don't always feel real connection with our patients.  This is human nature. At such times, professionalism dictates that we "fake it."  Some people might object to what seems like dishonesty, but when burdened by fatigue or challenged by a patient's hostility, oppositionality or lack of gratitude, sometimes we recognize the need to shoulder on, relying on sound habits of bedside interaction that are serviceable irrespective of whether there is authentic empathy for that patient in that moment.  It is not, after all, our duty to like every person we treat, but it is most definitely our obligation to treat every patient with courtesy, respect and diligence.

I've just read Medicine and Compassion, the co-production of David Shlim and Chokyi Nyima Rinpoche, a physician and an Buddhist monk, and I'm afraid the authors of this wonderful book would disagree with any defense of well-intentioned artifice.  Their view, in short, is that we can't really fake it.  When one considers the philosophical foundations of Buddhism, this conclusion comes as no surprise.  In their world view, thoughts and emotions create real effects in the real world.  The authors note:

"A benevolent frame of mind can ease the suffering of other beings, and a malevolent frame of mind can cause immense suffering."  

How one achieves this "benevolent frame of mind" --  which is also called "compassion" or "loving-kindness" --  is a much longer story.  It is a story worth pursuing, however.  In walking the path of meditation, in seeking to understand our connectedness, in pursuing "enlightenment,"  there are benefits for our own happiness as well as for our capacity to be present to our patients.  It is this attentiveness that our patients may need most as they confront the forms of suffering that are so familiar in the kingdom of the sick.

By All Means, Let’s Wow the Customer and Exceed Her Expectations. But Let's Get On With Taking Better Care of Patients (Which Is The Only Way To Improve HCAHPS Scores)

Among the most pervasive myths in contemporary healthcare is that HCAHPS is merely the new Press-Ganey and that generic efforts to improve “satisfaction” will help organizational performance on these metrics.

In what ways is this a myth?  First, whereas the Press Ganey tools ask consumers to rate aspects of care on a continuum of satisfaction, HCAHPS only asks about frequency.  The words “how often” precede all but two questions on the survey.  “How often did nurses explain things in a way you could understand.”  The fact that Nurse Smith is an awesome communicator and cared for the patient during much of his stay has essentially no bearing on deciding whether the best answer is “Sometimes, Usually, or Always.”  (In HCAHPS scoring, only “always” is scored in the numerator).

Where have we seen this kind of scoring before?  The answer is in the Joint Commission’s Core Measures, where top decile performance requires that the healthcare team accomplishes specific actions 100% of the time.  That might be the frequency with which influenza vaccine is administered to eligible patients, or aspirin to patients experiencing symptoms of AMI.  Providing exemplary service to cardiovascular patients is one thing; building process reliability to do one simple thing without fail requires another approach.

Is this analogy really valid?  Yes.  First, the same philosophy of quality improvement that underlies the Core Measures was at work in designing HCAHPS.  The goal was to encourage organizations to build reliable processes that ensure that they do what they intend to do for the patient, every time (or nearly so).  If there is going to be variation in care, let that variation be planned - around the needs of the patient - rather than as the accidental byproduct of inconsistency.

Additionally, almost all of the HCAHPS measures were designed to improve aspects of care that drive clinical outcomes of interest.  “Before giving you any new medicine, how often did staff explain side effects in a way you could understand” is not the kind of question that would ever be included in a patient satisfaction survey.  Performance in the domains of Nurse Communication, Physician Communication, Medications, Care Transitions and Discharge all align with important outcomes, including medication adherence, medication errors, readmission, markers of disease management (such as hemoglobin A1C in diabetic patients), 30-day readmission and, in the case of AMI, 1-year mortality.

Some have argued that “exceeding expectations” by emphasizing customer service could improve the “hospital rating” questions (there are two).  There may be some truth to this…but with caveats.  The first is that not every such effort drives this metric to the degree that we might guess.  Focusing strategically on what actually matters to patients is key.  Another is that CMS doesn’t treat these "hospital rating" metrics as special.  Together, they comprise just 18% of the Patient Experience measure set (which itself comprises 22% of the CMS Stars Rating report card).   So lets focus on helping patients by improving those aspects of hospital quality that are targeted by HCAHPS.  Some such efforts are well underway in our hospital.

In my next post: more about those efforts, and how the Relationship-Centered Communication course brings to the bedside evidence-based “micro-skills” that improve patient outcomes even as they help physicians to be more efficient, relieve our workplace stress and bring us greater joy in practice.     

Cappuccino and the Prefrontal Cortex - a Boston Diary

Three days at the Massachusetts General Hospital Psychiatry Academy's Child and Adolescent Psychopharmacology course (March 2-4, 2018) left me with a few thoughts. First, the coffee bar at the Back Bay's Eataly is worth a visit, if only to stay mentally charged between lectures at this high power conference, which covers everything from the molecular genetics of Bipolar 1 to the relative merits of stimulant and non-stimulant class agents in ADHD (Attention Deficit Hyperactivity Disorder).  Second, as pointed out by Dr. Joseph Biederman (Chief, Clinical and Research Programs in Pediatric Psychopharmacology and Adult ADHD Director at MGH and co-director of this course), all of the behavioral health conditions discussed in this program have been the subject of myths and popular misunderstanding.  True as this is for autism, tic disorders, depression, bipolar disease, anxiety and schizophrenia, it is probably ADHD that is most prone to distortion in the press and popular culture.

(See "Five Myths About ADHD" below.)

 Here's what else.  I spend a lot of my time looking at healthcare through the lens of quality improvement - a perspective and a toolkit that treats variation in care as something to be eliminated, while standardization is reinforced.  It relies on measurement of care delivery at scale,  and sees health encounters as a set of inputs and outputs.  By stark contrast, during 25 hours or so of lectures and discussion, the international thought leaders who were the faculty for this course spoke very little - if at all - about variation or standardization.

Instead, there was much discussion of individualized care -- and why there was no one-size-fits-all solution to mood disorders, or anxiety, and certainly not for ADHD or autism.  The emphasis was on understanding the rapidly changing scientific landscape, the best approaches to assessment and how therapeutics must be modified to meet the individual circumstances of our patients. Ultimately, it seems to me, this contrast is essentially about the difference between the delivery of healthcare to populations, and the practice of Medicine, which remains, principally, about the care of individual patients with their own unique situations, needs, responses to treatment and preferences.  This is not to say that one enterprise is inherently better or more valuable than the other.

It is to say, however, that they are distinctly different.  Were healthcare like a forest, a few paved roads in that forest would be the things we can and should standardize, and then measure and improve.  A vastly larger area would represent the forest itself,  laced with trails cleared to varying degrees.  We walk those trails with our patients, and sometimes we must walk where there is no trail at all.  But in this is the challenge and the joy of medical practice. 


FIVE MYTHS ABOUT ADHD

MYTH 1. It is always safer to avoid medications to treat ADHD

The outcomes associated with under-treated ADHD go far beyond the classroom. Individuals with this condition experience greater rates of tobacco and alcohol use during adolescence and beyond, each with their own known morbidity and mortality. Accident rates appear to be increased by 250% in affected individuals. In a placebo-controlled study of lisdexamfetamine on “surprise” driving events, Biederman and colleagues found that medication reduced the probability of motor vehicle collision by more than 60%. Finally, the effective treatment of ADHD appears to be important to reduce the effects of common co-morbid conditions, including low self-esteem, social isolation, depression and conduct disorders, with consequences that include encounters with law enforcement and suicidality. In a 10-year, prospective cohort study, compared with untreated patients, individuals treated for ADHD with stimulant medications experienced lower rates of anxiety, depression and ODD (Pediatrics 124(1):71, 2009).

MYTH 2. If nothing else, avoiding medication for ADHD at least reduces the risk of illicit substance use in adolescents with this disorder

Despite concerns about psychostimulants as “gateway” drugs, in reality, untreated patients with ADHD experience significantly higher rates of substance use disorders (SUD) than individuals who receive effective therapy with stimulant medications.

MYTH 3. Children who can play video games for “hours at a time” can’t have ADHD

Symptoms of inattention and distractibility are context dependent. A better measure of these symptoms involves an assessment of the child’s performance when carrying out a task in which he is not naturally interested.

Myth 4. ADHD is a subjective diagnosis with no known biological markers

Multiple lines of evidence support the concept that ADHD is a distinct brain disorder, albeit one with multiple genetic and environmental risk factors. Functional MRI comparisons between ADHD patients and normal controls demonstrate differences in frontosubcortical networks involving the (ventromedial, dorsolateral and orbitofrontal) prefrontal cortex, parietal cortex and the basal ganglia - neural networks which appear to support attention, executive control, anticipation and reward. Additionally, studies have begun to elucidate the complex genetics of ADHD and other neuropsychiatric conditions.

MYTH 5. Children always “outgrow” ADHD

The typical trajectory of ADHD involves improvements in impulsivity and hyperactivity over time, while inattentiveness tends to persist. Studies have documented a worldwide prevalence of 5% among adults. This is a highly prevalent and highly morbid condition in the adult population, and one that is therefore worthy of significant attention by primary care physicians.