The Healthcare MacGuffin?

Last week’s ABIM Foundation Summer Forum focused on patient-centered care… and who could be against that? But is patient-centered care just a healthcare MacGuffin?

What’s a MacGuffin, you ask? In a spectacular talk at the Forum, Michael Richardson of Chicago’s Hines VA reminded us that the MacGuffin was one of Alfred Hitchcock’s favorite directorial strategies. Hitchcock defined the term this way:

a plot device that motivates the characters or advances the story, but
the details of which are of little or no importance otherwise.

loved Richardson’s analogy when I heard it, but its utter aptness
became clear only as the conference proceeded. Let’s start with the
areas of general agreement (thanks to Jim Naughton, Chair of the ABIM
Foundation, for articulating these points):

  • Patients’ preferences should be respected.
  • We should attend to patients’ emotional needs, context, comfort and meaning.
  • Patients should be engaged and empowered.
  • There should be shared decision-making that promotes patient autonomy.
  • Family and friends should be involved in care decisions where appropriate.
  • Care should be coordinated within and across systems.

Well, sure.

But then things became a bit fuzzier. The conference’s first talk was framed as an egregious example of what happens when care isn’t patient-centered. Margaret Murphy,
a soft-spoken, matronly Irish woman who now serves on the Patient
Steering Committee of the WHO’s World Alliance for Patient Safety, told
the tragic, infuriating story of her 19-year-old son Kevin’s needless
death. Somehow this young man with classic hyperparathyroidism
(“stones, moans, bones, and abdominal groans” – a constellation of
symptoms recognizable to any decent 3rd year medical student) was
misdiagnosed for the better part of a year, in a tragedy of cognitive
(he carried the presumptive diagnosis of leptospirosis for months) and
logistical (his hypercalcemia was noted on a Post-it Note that got
stuck to the back of a piece of his chart and went unseen for weeks)

This isn’t a lack of patient-centered care. This is
unconscionably bad doctoring, mixed with really awful systems, pure and

(A number of us were struck by this mistaken diagnosis of leptospirosis,
an unusual bacterial infection usually contracted through contact with
water contaminated with the urine of infected animals. I’m pretty sure
I know how this wrongheaded diagnosis was made. When I was a UCSF
resident, one of the community-based physicians admitted a patient to
me. This physician, may he rest in peace, had a well-deserved
reputation for clinical incompetence. “Bob,” he said in his
glad-handing way, “I think this guy has amyloidosis.” I was impressed:
amyloid is an unusual disorder with a variety of fairly specific organ
system derangements. Was it possible that Dr. X had analyzed the signs
and symptoms and made this diagnosis? That seemed farfetched. “What
makes you say that?” I asked, genuinely interested. “Well, I saw a guy
a few months ago who was really, really sick, and he
turned out to have amyloidosis.” I’m guessing that some hapless Irish
doc saw one serious case of leptospirosis, and he’ll keep making that
diagnosis until a new case happens along or he retires, whichever comes

Anyway, back to the issue of patient-centered care. The keynote speaker at the Forum was Don Berwick, President of the Institute for Healthcare Improvement. In what is getting to be a habit for me (see also here and here),
I found Don’s speech to be powerful, poetic, and problematic. Entitled
“Patient-Centered Care: Confessions of an Extremist,” Don argued
persuasively that our healthcare system infantilizes patients, strips
them of their dignity, and robs them of their choices. He told a
compelling story of his friend who, as she was being wheeled into the
cardiac cath lab, asked the docs and nurses to allow Don to accompany
her inside. “I’m sorry,” said the cardiologist. “I am just not
comfortable with that. We don’t do that here.”

“Of course they ‘can’ do that,” Berwick fumed. “They choose not to do that, and their choice trumps hers, period.”

He went on to propose a new working definition for patient-centered care:

experience (to the extent the informed, individual patient desires it)
of transparency, individualization, recognition, respect, dignity, and
choice in all matters, without exception, related to one’s person,
circumstances, and relationships in health care.

in the abstract, I guess. Where Don lost me, and I think many in the
audience, is when he moved into the extreme view of medical
consumerism: segueing from the mantra “Nothing About Me Without Me” to
what might be interpreted as “Nothing About Me If Not By Me (after
consultation with these so-called experts)." In taking this position,
he soundly rejected the notion of a profession as a “work group that
reserves to itself the authority to judge the quality of its own work”
(in Freidson’s influential words) – which created in medicine the assumption of altruism, specialized expertise, and self-regulation.

me drive my stake into the ground firmly at one end of the range
between the professionally dominant view of quality of health care and
the consumerist view. My stake is far from Freidson’s definition.
Indeed, I think it wrong for the profession of medicine, or the
profession of nursing, or any other health care profession, for that
matter, to ‘reserve to itself the authority to judge the quality of its
work.’… For better or worse, I have come to believe that we – patients,
families, clinicians, and the health care system as a whole—would all
be far better off if we recalibrated our work such that professionals
behaved with patients and families not as hosts in the care system, but
as guests in their lives.

Of course, there are
lots of examples of self-interested behavior and cowardly
self-regulation among my colleagues in the medical profession. But is
the entire notion of Medicine as a Profession flawed, best replaced
with unbounded consumerism?

As always, Harvey Fineberg,
sage President of the IOM and former Harvard Provost, asked the central
question. “Say I’m a middle aged man, nervous after hearing of Tim
Russert’s death, and I want a cardiac CT to reassure me. Would you give
it to me?”

Don hesitated before answering (“exceptional cases
make bad rules,” he said – though few thought Fineberg’s hypothetical
to be all that exceptional) and ultimately said, “Yes, I guess I
would.” In other words, in the Berwick world of patient
self-determination, patients have a right to demand non-evidence-based
and expensive care, and we have an obligation to comply. Does this make

People referred to Harvey’s question and Don’s answer for
the rest of the confab, since it highlighted the problem when the
consumerist model is taken to extremes. Don’t get me wrong: I find much
to commend in the model: patient’s should get as much information as
they can from providers and other sources, they should be able to
bypass the traditional medical system for care if it suits them
(including through Web 2.0-type sites and social networks), and they
should always be treated with dignity and respect.

But they should not
have the right to demand care that is harmful or non-evidence based.
Why? Because the hospital is not a Starbucks. Starbucks is there to
meet my wants for coffee, chocolate, and whipped cream, and they do a
damn good job of it. And I make a private, independent decision that
spending $3.25 of my own money to buy such a concoction is a good call.

long as we have a system of health insurance, healthcare will be a
shared resource: more for one is necessarily less for another. I know,
much overuse isn’t patient-generated, it is doctor-generated
and it can be readily explained by profit-seeking behavior among my
professional breatheren. That is disgusting and needs to be addressed.
But to say that patients have a right to any care they want – since
they are indelibly in charge – can’t possibly work. Moreover, as I wrote
a few months ago, placing the burden of decision-making on patients and
families (particularly in decisions surrounding end of life care), as
the autonomy movement would have us do, oftentimes places them in a
wrenching position.

In a lively and useful dialogue, several
other speakers at the Forum rebutted the extreme view of
patient-centered care, at least in part. Ron Epstein,
a Rochester professor and a national expert on patient-centered care,
explicitly said that it is not “always giving patients what they
request or feel that they want or need.” What is it, then? Epstein
emphasizes that giving patients (or families) information that allows
for shared deliberations and ultimately a “shared mind” is at the crux
of the matter.

Even more compelling was the discussion by Amy Verstappen,
an advocate for patients with congenital heart disease, who argued that
the focus on satisfying every patient whim was frivolous and not what
she and other patients really want. “Patient-centered care is a luxury
I can’t afford,” she said. “I want you to not kill me, and to help me
live longer. That’s it.”

Troy Brennan,
the brilliant former Harvard professor who is now Aetna’s Chief Medical
Officer, also scoffed at the extremist notion of patient-centeredness.
“If I’m going into the cath lab,” he quipped, “I’d rather bring my dog.
He’s very empathic.” He went on to second my argument about shared
resources: It is one thing to try to attend to patient’s needs, he
said, but quite another to try to meet all their wants in the name of
patient-centeredness. After all, he observed, “there’s no new money
coming into the system… except, of course, for the 10% annual
healthcare inflation.”

Mark Smith,
president of the California HealthCare Foundation and one of the most
amusing and insightful people I know (and a strong supporter of
consumerism and transparency), noted that sometimes patients just want
to be patients. “The more horizontal you are, the more patient-like you
are… Not every patient wants and needs to be a ‘consumer.’”

I guess that’s my take on this whole debate. Patient-centeredness is
a reasonable aspiration, and it is highly appropriate for some patients
in some situations. Because I tend to see mostly horizontal patients, I
believe that my patients are more interested in care that is
compassionate, open, safe, evidence-based, and – at times (gasp) – even
a bit paternalistic.

Nearly three decades ago, Franz Ingelfinger, editor of the New England Journal of Medicine,
developed stomach cancer, an amazing irony since he was one of the
world’s experts in this cancer. When he sought help from his physician
colleagues at various Boston hospitals, everyone deferred to him,
asking, “what do you think we should do?” This left him tied up in
knots of indecision and anxiety.

Finally, one of his friends gave him wonderful advice, which he described in a NEJM article simply entitled “Arrogance.” “Franz,” he said, “what you really need is a doctor.”

as we embrace a more patient-centered model of care and accept – even
welcome – far more empowered and knowledgeable patients, we can’t
forget that sometimes patients really need a doctor. We don’t do them any favors when we duck that responsibility.

Even, perhaps especially, in the name of a MacGuffin.

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9 replies »

  1. I am sorry for Caitlin about her bad experiences that she alludes to. I personally think that access is not a problem in the US for most conditions, as long as one has insurance (there is a shortage of PCPs in many regions, and a shortage of few specialties such as pediatric neurologists); and the technical quality of care is usually reasonably good (and I have worked in Europe and in the US), with some issues such as fragmentation, overtreatment etc. (issues which are debated here all the time). I wonder whether your expectations are realistic.

  2. I work in the healthcare industry, and both my husband and myself have had cause to be patients more than once in the last 5 years. I find the entire notion of patient-centered care, as presented in this article, hard to take seriously (ie, these sorts of presentations come across to me as lofty, thumb in bellybutton, pie-in-the-sky aspirations) because the dearth of patient-centered care becomes apparent the moment you try to enter the system with a new condition, gain a referral, or find a specialist who will consider your case. The firewalls in place to prevent patients from even seeing (arguably very good) physicians is disheartening and exhausting.
    In no way do I see myself as a “consumer” in this arena anymore; being a consumer implies that I have some level of control. I might if I had A LOT of money and connections. Instead, I’ve become an advocate (that is the politest word I can think of for it), for myself, my husband, and my children. And unfortunately, I’m generally on the offensive at this point when trying to get something done, because I assume it won’t happen unless I fight for it. This has nothing to do with evidence-based medicine or (on the other hand) my whims. It has to do with a non-responsive system.

  3. I think Berwick probably looks about him at the disaster that is the US healthcare system and has given up on it. “I have come to believe”) Likely if he practiced in his home country, he would be less skeptical towards the profession.
    With regards to the question of how non-patient centered care can be detrimental, I suggest that one looks at the Kangaroo Care for preemies to see how the simple idea that parents want to be close to their babies was rejected at first.

  4. I wonder how much of the healthcare lobby money spent to “persuade” politicians is for patient-centered care?

  5. Patient involvement, responsibilty, and accountability are all important issues. Consumer directed health care, however makes me think of consumers going down the aisle at wal-mart or the local supermarket. Things are placed at eye level that are the most expensive, and least healthy. The healthy foods are distributed around the periphery of the supermarket….What are consumers directing?
    Are consumers required to take Continuing Consumer Education courses, or be recertified every seven to ten years?? A little knowledge is a dangerous thing.

  6. I wonder how much of Dr. Berwick’s perspective is influenced by the fact he’s a pediatrician and sharpened his clinical teeth caring for kids.
    There seems to be a certain idealism about “The Patient” in his speaking/writing, often appropriate when the patient is a child.
    Dealing with the adult patient often lets a little more realism into the equation.

  7. If “patient centered care” were all about allowing the patient to direct the care being provided, I would agree that this could result in excessive and even harmful care.
    However, in the extent that it is focused on coordinating the information and evidence based clinical decision making and expertise of a broad range of medical and clinical professionals in order to diagnose and treat (and cure) a patient as effectively and quickly as possible… how could that be a bad thing?

  8. I share Dr. Wachter’s and other’s skepticism re. some excesses patient centered medicine.
    Patient requests of noninvasive tests are not at all rare (there are also less obvious requests incl. the one that “sthg needs to be done now”). I do think, however, that it is reasonable to discuss with a patient why a certain test or therapy does or does not make much sense in a given situation, and I think we owe that to any patient, esp. the a well informed one.
    With regards to decision making, I do think one can individualize this based on the individual patient. My approach is to briefly discuss the patient’s options; if he/she/they want a more “paternalistic” style, they will tell me right away: “You tell us what to do, you are the doctor”. If they want more autonomy, they will ask questions and deepen the discussion. I do think that these days, major options need to be outlined to every patient, for medicolegal reasons alone.
    As a side note, I am a little bit hesitant to judge a colleague’s qualities by missing a diagnosis that “a medical student should have made”. After refreshing my knowledge about Hyperparathyroidism (it’s not in my specialty), it seems to me that the symptoms are not overly specific, and I believe that it is the Calcium (a test that virtually any pt in the US gets at some point during a work up as it is part of dx panels) that leads to the correct diagnosis in most cases. If one wants to criticize the first physician, I think any (reluctant) blame should be put on the failure to follow up on lab tests, not on missing “stones, moans, bones, and abdominal groans”. That being said, I agree that this seems to be a case of bad doctoring, not a case of patient “uncentered” medicine.
    Last comment/reminder: Not only the – in my opinion – bad kind of patient centered medicine (superfluous tests per patient request), but also the desirable kind (answering a lot of questions, long discussions of options) takes time and ressources.

  9. As a patient being left to die at home slowly and painfully because I have an extremely unusual condition that would actually require doctors to do housecalls – I’m too fragile for any form of safe transport and with adaptive needs too unique for an institutional setting – I’ll admit to being more than a tad skeptical that anything like “patient centered care” is being practiced today.
    Prior to this I spent over a decade of taking myself from specialist to specialist and learning that if I wanted any real work done toward investigating what I might have, then me and my family had to do the research; learning not to bother sending my thick and complex medical file ahead of time because the doctors obviously would not have read it when I got there…
    Many many similar learnings, none of which suggested the existence of patient centered care. I imagine that if you have a convenient disease that your insurance knows can be treated prommptly in a way that will save them money, this could feel like patient centered care.
    But I can assure you that this would be an illusion.
    Paul “A Not So Inconvenient Truth because I’m Easily Ignored” Martin
    PS: The problem, of course, is systemic – I didn’t mean to sound like I was placing primary responsibility on doctors, who are themselves trying to operate in the context of an inhumane health insurance industry bent on extracting every possible penny from the sick while laying out as little money on their behalf as they can get away with, which is a lot.