Is “Patient-Centeredness” a 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:

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

I 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) errors.

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

(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 first.)

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:

The 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.

OK 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.

…Let 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 sense?

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.

As 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.”

Even 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.

9 Responses to “Is “Patient-Centeredness” a Healthcare MacGuffin?”

  1. menoalittle August 4, 2008 at 3:50 pm #

    Bob,

    Brilliantly written. Patients are part of the team and care could not be given without them. However, regardless of which nuance of patient centered care the experts espouse, each is diametrically opposed to computer focused care. When doctors and nurses are sitting at the terminals concentrating on managing the counterintuitive idiosynchrasies of CPOE machines with decision support tacked on, the patient is insidiously ignored. Is this patient centered or computer centered?

    The same folks who espouse patient centered care while simultaneously promulgating widespread use of electronic ordering, should actually take care of patients using these machines and not rely on their housestaff or paraprofessionals to click away. It will be intersting to learn of their experiences of cognitive disruption.

    Best regards,

    Menoalittle

  2. chris johnson August 4, 2008 at 5:06 pm #

    Sometimes giving patients what they say they want isn’t just bad medicine (e.g., a test or procedure that isn’t indicated)–it’s unethical. And patients can’t compel me to act unethically.

  3. rwdrwd August 4, 2008 at 7:40 pm #

    Wasn’t it Berwick who ranted at SMH 2008 about how inefficient U.S. health care delivery is because we spend more to get more, but much of what we get is unnecessary and ineffective? And how we need a grand “integrator” to eliminate this waste? That’s diametrically opposed to what he’s saying about patient centered health care. You can’t have it both ways! His credibility just went down another notch for me.

  4. andrewmc August 5, 2008 at 12:11 pm #

    As a non physician but someone who works in acute hospitals full time it is becoming, or has become apparent to me that “patient involvement” means many different things to many different people.

    I think that many people look at physicians and surgeons with awe but we all know that whilst most are clearly intelligent and have entered their chose profession for wholly admirable reasons they are not infallible and nor should they be expected to be.

    I want my doctors to be able to communicate effectively with me, explain in layman’s terms the situation and to be able to recommend a course of action. If I have any doubts about their competence or the explanations given I want to be able to seek a second opinion.

    I don’t believe it is my place to tell them what I want them to do because

    a) I did not spend 15-20 years training to be a MD and
    b) I am not sure that when faced with a serious health problem I would be in a position to be rational enough to make a sound judgment that is required of a professional assuming I were even a MD, but I do believe it is reasonable to expect them to explain to me what they are going to do and why.

    The thought that I would tell any health care professional what they should do to me and why is asinine, its a little like suggesting that as purchasers of cars we should be telling Toyota, GM or Ford how to make them.

    The analogy I have always used when providing training on service improvement when presented with individuals that have insisted that patient be involved in the redesign of services is that it is fine as a patient to inform the environment, the issues surrounding communication and so on and so forth but you would never expect a car buyer to tell a car manufacturer how to make a gear box. A consumer can tell a manufacturer that they want the car in blue, with 2 cup holders, to have 4 wheels and gear box but the consumer would never tell the manufacturer how to do it and the same is true in health care. The patient can state that they want good quality health care that is evidence based where possible, that they want a clean, safe and friendly environment but when it comes to the provision of care and how it is delivered I think that is beyond the scope of even the most qualified patients.

  5. Mark Shen August 5, 2008 at 6:50 pm #

    Bob,

    I am a pediatric hospitalist and am curious to find out just how many pediatric hospitalists read your blog. Family-centered rounds is the new black in pediatric hospital medicine and this leadership is expanding to family-centered care throughout the hospital. While there are some minor differences between patient and family-centered care, the principles are the same, so I would imagine that if there are pediatric hospitalists out there, your thoughts may strike some sort of a (dis)chord.

    Some general comments:

    1) To join in your critique of consumerism, it is likely impossible for physicians not to be paternalistic the majority of the time. How do vertical doctors and horizontal patients communicate in a field that is taught through one decade of training and multiple decades of experience? This could be an entire discussion in philosophy or epistemology, but I’m not sure that the concept of family or patient-centered care hinges on these fine distinctions. It’s a movement and an attempt at culture change.

    2) Thus, to defend Dr. Berwick, I think that it’s a little too easy to critique the extremist view. I don’t know what Dr. Berwick’s motives were in his talk, but as you well know from your role as a leader (and frequent speaker), sometimes talks are meant to be less rational and more inspiring than anything else – one approach is to use powerful stories as emotional arguments. This is meant not to convert everyone to the view in extremis, but to merely stimulate thought in an attempt to begin to change culture. In a similar vein, it is possible to misconstrue from your critique that you are opposed to patient-centered care, despite your well-worded support of most of the basic concepts. Leaders are easily boxed into simple good or bad, pro or con categories based on a few over-applied comments – I would imagine that your comments might have the same effect on some as Dr. Berwick’s had on you. Thus, I would ask you what your role in this is as a thought leader.

    From my vantage point, sometimes in order to get enough leverage to move the pendulum a little, you have to pull from a vantage point that is far enough removed from center.

  6. Lee Kheng Hock August 6, 2008 at 4:18 am #

    Responding to Dr. Shen’s second point:

    Sigh…..that’s the harm that extremist does to a noble idea. Many believers, practitioners and advocates of patient-centered care would not agree with extremists and “bandwagonists” who hijack this much needed care paradigm and turn it into a MacGuffin…….much as I like the word :-)

    Don’t throw the baby out with the bath water.  Just throw away the extremists.

  7. Rich Olson August 11, 2008 at 3:46 am #

    Understanding this debate seems central to learning how on becomes a physician, a ‘doctor’. Whether or not computer based decision support is involved, I feel a physician ought to negotiate with the patient whether to proceed with his/her best judgement, or lay out options and information and support patient (with family, usually) in arriving at their own decision. Spending other people’s money is a joint project between doctor and patient, whether profit winds up in the doctor’s pocket or not.

    What I find missing from the ‘geek squad’ of medical informatics is the option of presenting data with computer assistance to graphically lay out choices at the bedside or consultation room. While compassion might caution against showing survival curves to a pancreatic cancer patient, some patients would welcome data, for usually less frightening conditions. If the computer were used to augment the doctor-patient relationship, maybe we wouldn’t find as much truth to the comments of menoalittle:

    “doctors and nurses are sitting at the terminals concentrating on managing the counterintuitive idiosynchrasies of CPOE machines with decision support tacked on, the patient is insidiously ignored. Is this patient centered or computer centered?”

    Down the blog roll at Kevin, M.D. is a report today of patient centered information gathering that begins:
    “Dr. Google, meet Ms. Cyberchondriac. Ms. Cyberchondriac, meet Dr. Google.”

    Indeed. An opportunity (management lingo for ‘problem’) has arisen for us to manage medical information beyond current Google and CPOE/decision support systems.

    What relationship enhancing information solution could we design to manage the relationship, whether paternalistic by choice or patient-centered by demand? After that consider and recalculate with the influence of money, whether the patient bears a personal burden or the doctor enjoys a profit.

    Rich Olson, MD
    Gainesville, Georgia

  8. Albert Wu March 17, 2011 at 12:35 pm #

    Just re-reading this now (you don’t read the classics, you re-read them), and I like it even better this time than the last! I’m going to cite it in a manuscript.

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