Archives for posts with tag: patient-centered care

Why individual and community are both undermined by Trump, and both need to be placed at the center of compassionate care as part of anti-Trumpism

The righteous battle to keep ACA from being dismantled saved health insurance for millions. That was salutary in all senses. But the larger terms of the conflict are worth addressing — because they illuminate both why Trump is to be fought, and what we have to do to make healthcare work.

Read more here: https://medium.com/@ZackBergerMDPhD/patient-and-society-in-the-anti-trump-movement-dad56382515

My Facebook feed is riven in two. On the one hand, there are free-thinking, scientistic doctors, patients, and those who love them (or tolerate them enough not to hide their status updates). On the other, are Jews: and, for some reason having to do with personal curiosity and involvement with Yiddish speakers, many of them are Jews who are Chasidic, used to be, or are somewhere in between.

Both camps are in the throes of realignment. The former, because evidence-based medicine is screeching towards the end of a game of chicken, the other competitor being (unfortunately) the patient as a person, with power over her own decision making.

Let’s take the most recent example of this hair-raising collision: statins. Cholesterol medicines, in other words, and what to do about them. Yes, we should probably get rid of these artificial numerical targets, it seems like most people agree on that. But the new guidelines, according to which (grosso modo) everyone with an estimate 10-year heart disease risk of 7.5% “needs” to be on such a medication, are rightfully controversial. If you are the type to read JAMA articles, you will be entertained by John Ioannidis (he of the “half of all scientific findings are wrong”) on the one hand, who darkly prophesies “one of the worst disasters in medical history” due to vast overtreatment with statins. (Um. Flu? AIDS? The plague?), and, on the other hand, a professional, prudent take by some collaborators on the new guidelines themselves, who take what seems to be the best defense possible: The science is better; we are working towards incremental improvement of guidelines. In short: nothing’s perfect. This is a step forward from where we were.

If you read the articles back-to-back, it seems an awful lot like the internal breakup currently convulsing ultra-Orthodoxy. Belief and practice are at loggerheads, and tiny fish are getting squished between the logs. Are you a believer or not? Are you an incremental advancer or a revolutionary? Are you willing to listen to doctors by virtue of their social standing and hereditary place as healers, even if their advice might not be better than random chance?

Does medicine need a revolution to upend received wisdom – even the new received wisdom of our day, which is the dogma of evidence-based medicine – enthroning in its place the empowered singular patient? Sure, if you are the type to upend and revolt. But not even the most engaged of patients want to get rid of everything the medical establishment has to offer. Similarly, even those about to leave their hidebound religious communities sometimes find themselves at peace with a stable compromise. They don’t have to believe in everything.

If a revolution is possible, but we choose an incremental change, are we being sensible – or hypocritical?

I am exhausted, but before I drift off to bed here in Beijing I wanted to give an account of my first full day.

I sat in on rounds at Peking Union Medical College Hospital, my host and one of the top-ranked hospitals in China. The General Internal Medicine Division is renowned for its ability to treat the hardest cases and consistent high reputation, which becomes a self-fulfilling prophecy in certain respects (sound familiar?).

The similarities are not all that interesting: the team sits round a table and talks about the new patients, then walks through the wards seeing the old patients. Questions are asked to put medical students on the spot (in American English we have a word for that). The differences, however, are somewhat instructive.

In the United States, at least in the internal medicine programs I am familiar with, the senior resident runs rounds and the attending stands by the side to give a teaching point or a minor correction; here, it was the attending leading the discussion. In the United States, the entire team, in many hospitals, is by now acculturated to use hand sanitizer on leaving and entering every room. In the PUMC GIM ward, I was told by someone that I didn’t need to use sanitizer if I wasn’t touching the patient.

There was one similarity which was immediately evident: the hierarchy that hung over interactions between doctor and patient, and the great respect with which the patients treated the doctors every word (though the medical students I spoke to later expressed worries that patients no longer respected them). I don’t understand enough Chinese to know whether the doctors were attuned to the patients’ needs apart from their own particular workflow needs on rounds, but if these doctors are anything like many American ones, I can guess the answer…

* * *

Later, I had the great opportunity to give a presentation for medical students about bridging evidence-based medicine and patient-centered care, using localized prostate cancer as a case in point. We are trying to understand why patients with that most limited stage of cancer might leave an active surveillance (watchful waiting) program to get radiation and surgery which might not be clinically indicated.

We had a lively discussion. I fielded an expected question about what differences I noticed between the Chinese and American health care systems, after less than 48 hours of superficial experience with the former. I tried to demure, but one thing I did talk about was the overuse in the American system, over against the underuse in China which is prevalent for millions and millions of mostly rural poor. We also talked about what doctors might do when what patients want is against the best evidence.

After the lecture, I had a chat with a student of Uygur ancestry who was very interested in the role of religion in health care in the United States. I told him what I think is true: aside from end-of-life care and bioethics, the role of religion is underexamined.

* * *

Finally, I met a bioethicist, Yali Cong, from the Peking University Health Science Center (not to be confused with PUMCH, above. A city of 20 million, Beijing has a lot of hospitals!). We talked about one of the chief difficulties for those involved with clinical and research bioethics: the expectations of clinicians that bioethics will be able to give an “answer,” where in reality what a bioethicist can give is an overview of possibilities, a mapping of the territory, and – in the most lasting influence – a habit of thought that even, or especially, non-bioethicists might benefit from.

* * *

It’s been a great visit so far, and even after I leave China I hope to connect with people here through email and Weibo, my newest social media addiction made all the more interesting by the fact that my Chinese is a lot less than fluent.

Here is a talk I gave at the annual meeting of the National Physicians Alliance on October 20, 2013, in Washington, DC. The briefest version is this: Everyone talks about patient-centered care and realizes that our system is doctor-centered. How do we square the circle and get from one to the other? Patient-centered care is a mantra more often repeated than deliberated on and well defined. We must recognize that patients are unique individuals, and that the relationship between the primary care provider and the patient, a pillar of an improved system, must include all sorts of patients – no matter what their desired involvement in decision-making.

A friend wrote me after a reading:

“[W]hat I took from it is that there are indeed two MEDICINEs: the science one (read lab animals) and the humanistic one in the best tradition of Hipoocrates forward.”

The reference to “two medicines” puts me in mind of the famous essay by C.P. Snow about two cultures: the sciences and the humanities. If you read far enough down in the Wikipedia article about the concept, you see – as with so many concepts – how it becomes complicated and quibbled with out of all recognition.

Sometimes, though, quibbling misses the main point. There are those who are blind to the sciences, and those who are exclusively centered on the virtues of the humanities. Not to say that there isn’t overlap, but there should be more.

The same can be said of medicine. To be excellent professionals, doctors and nurses require both technical facility and appreciation of emotional complexity. And by “excellent” here I mean something like “virtuous,” in the sense of striving towards perfection of the whole individual.

So, when we are talking about the two medicines, perhaps we should mean that the best of the scientific/biomedical view of the patient, and the humanitarian/narrative/irreducibly complex view should both be united in the provider. If that were the case, whatever action a provider took would be in a deep sense uncategorizable. 

Patient-centered care often brings the grandest flights of fancy rudely down to earth. Whether this applies to the idea of “two medicines in one provider” is difficult to say. I do think that most people are looking for a provider who combines multiple virtues: a full person, not a scientific machine nor a device to convert suffering into publishable narrative.

How to cultivate such inner diversity, true balance, without sacrificing depth and accomplishment…?

Cross-posted to the blog at Talking To Your Doctor.

My institution recently switched from its home-grown electronic medical record to EPIC, an EMR for which many great things have been promised. Indeed, it is a considerable improvement over the past system. A number of hopes have been pinned on the latest-generation EMRs, not the least of which is the idea that finally, with this newest generation of tools, a nexus can be created and sustained among comparative effectiveness research (i.e., the branch of medical science that asks which treatment are better and why), clinical care, electronic records, and patient-reported outcomes. A very recent article by my senior colleague in the School of Public Health, Albert Wu, and colleagues, traces the genealogy and current outlines of this nexus – and advises what might be necessary to move this opportunity forward.

One point he doesn’t raise in his article, however is which patients are actually using such EMRs. I was talking to a colleague the other day, and asked him idly what proportion of our patients had “activated” the code they were sent to access their patient portal into the EMR. “Twenty percent,” he sang out, and then, perhaps noting my shocked expression, quickly added, “But that’s good!”

I don’t know how good that is, but – for whatever reason – I can’t find much recent scientific literature on the prevalence of patient activation of such portals in recent years. However, a study conducted in New York City in the year 2010 published in the Journal of General Internal Medicine presents some interesting figures. Namely, that 16% of all patients in the study received an access code, and of these, 60% activated their code. Disparities were noted: those who activated their access tended to be whiter, English-speakers, and with private insurance.

Similar reports are available elsewhere, though not seemingly from much more recently [as always, I would love getting updates and will happily correct in this space]. The question remains: in any given practice, how do we make sure that the patients who are actually using the EMR faithfully reflect the composition of the entire population? If we do not somehow make these portals widely available, without disparities or inequities, we risk doing what doctors have always done: thrust health interventions at their patients without regard for accessibility or patient-centeredness, and then act cynical or walk away when patients do not snap it up with alacrity.

Cross-posted to the blog at Talking To Your Doctor.

From engagingthepatient.com

Yesterday I spent the day at a panel sponsored by the Institute of Medicine meant to encourage the broad adoption of shared decision making: that is, a culture where doctors and patients help each other work towards a decision that’s right for the person seeking care.

Of course, my first question to myself (which I raise only occasionally to others) is this: what are the assumptions here, and how is this going to help people feel better and live longer?

The assumptions are that people – most people? the average person? the person living the most engaged and healthiest life? – want to be involved in making health care decisions. Advocates of shared decision making like to point out that this is self-evidently true.

But, as I point out in my book, it’s just not. Not because people are passive and would like doctors to walk all over them, but for any number of other reasons: they assume that doctors are in general skilled and have the patient’s best interests at heart (sometimes true, sometimes – unfortunately – not); they are intimidated and made uncomfortable by the determinedly alien nature of our healthcare system; they are too stressed, poor, uneducated, or sick to keep their mind on anything so complicated as a healthcare decision. One solution to this just-not-so (or the “yeah-but” of the real world that gets in the way of many ideologies) is to explicitly encourage patients to take that step in sharing decision-making with their doctors, to become the passionate self-advocates that many assume we all should be.

But when that doesn’t work, we should realize it’s not patients’ fault, or doctors: we need to remake our system. There are plenty of routes to do so. We can encourage doctors to involve patients in decisions by giving them money to do so; we can put more information in the hands of patients and explain it in a way they can understand; we can make it easier for poor patients, or those from disadvantaged groups, to access the care they need. Or – again, as I point out in my book – we can invest in the emotional foundation of care, a working patient-provider relationship that makes shared decision making more sustainable.

Does shared decision making lead to better health, less unequal care, and lower costs? It has that potential, at least for the first of those three. Whether shared decision making is the right star to chase, the direction to go in through the desert that will lead us to the triple aim of better care, lower costs, and greater satisfaction: that, I don’t know. My personal preference is for communication and relationships to be our north star. I can believe in SDM, though, too!

Cross-posted to http://www.talkingtoyourdoctor.org/blog.html.

It’s commonplace now to say that medical care needs to be patient-centered. But what does that mean? How do we make sure that the doctor’s advice is tailored to the person in front of them? Part of what I argue in my book is that true patient-centered medical care has to be based on a relationship with the primary care provider, which in turn is dependent on good communication. But there’s another dimension: the medical care proferred has to be modified based on the person’s individual, unique needs. Medicine is not one size fits all. Every rule can be bent, every guideline can be remixed based on the person talking to the doctor at the moment.

But how are we to get there? And does it make a difference?

In a recent article in the Annals of Internal Medicine, Saul Weiner and caolleagues, from Duke and the University of Illinois at Chicago, defined this necessity, calling it “context-dependent care.” In their study, patients surreptitiously recorded physicians, and the resultant recordings were analyzed to identify whether doctors appropriately modified their care based on contextual clues provided by the patient. For example, a patient with presumed hypothyroidism might also have depression; a patient who needs insulin may be unemployed and homeless, needing some creative solutions to getting them their medication. 

The result of their study? Such modification of care plans according to context actually improved care outcomes. This is an interesting finding, but I think the bigger-picture advance is to recognize what patient-centered care actually is: not a mere elicitation and application of “preferences” (Ms. Gomez, do you prefer X or Y?), but a translation of the care plan into the patient’s world, with all the complications and nuance that entails. 

How do we make patient centered care happen? One way is to ensure that both patient and doctor are using good communication practices on a foundation of a positive relationship – this is the subject of my book, Talking to Your Doctor.

But what if the doctor and the patient talk the right way, and get along, but somehow the plan of care does not end up focusing on what is really important to the patient, the subtle and overt ways in which her circumstances are different from the textbook or algorithm? Part of making the leap from checklist to patient is to maintain a resolute though polite and productive skepticism towards quality boosterism, another topic of my book. 

We also need to ask a scientific, empirical question: does patient-centered communication always lead to patient-centered care? No, it doesn’t, says our anecdote and intuition, but for the first time recently I saw a scientific study which helps to show this. Published in the Journal of General Internal Medicine, it’s a study of physicians’ reactions to unannounced standardized patients and their ability to “depart from the script” of how diseases are usually treated on the basis of widely accepted algorithms. 

The study has many moving parts and is worth reading in full. In brief, though, the researchers trained the standardized patients to portray cases which would differ in important but various ways from a baseline case presentation. (By and large, doctors cannot distinguish between well-trained simulated patients and real-life equivalents.) For example, a woman could come to see her doctor for an evaluation before a hip replacement. Rather than going through the motions, the astute physician should notice the red flags that some simulated patients were told to portray. For example, she might have symptoms of hypothyroidism. Or, in a separate alternative portrayed by some simulated patients, there might be a troubling context for the surgery (e.g., the woman’s desire is to have the surgery so that she can take sole care of her adult son with end-stage muscular dystrophy).

A widely used classification system was used to measure the patient-centeredness of the physicians’ communication, and independent raters – doctors themselves – then evaluated, blinded to the communication ratings, whether the doctors had met the challenge of the simulated patients, caught the red flags, and completed a plan of care which acknowledged the complexity of the individual before them.

You can guess the punch line: there’s no relationship between them, at least not found in this study. With the usual caveats – read the article to get the details – we come around to a basic question. If patient-centered communication does not inexorably lead to patient-centered care, should we be measuring something else? And does communication matter as much as we think it does?

No big surprise: I think it does matter, for ethical and psychological reasons as much as due to any possible impact (or lack thereof) on the plan of care. I’ll touch on those reasons in future posts. 

 

In my book, Talking to Your Doctor, I discuss at length the importance of the doctor-patient relationship, and how mindful communication can strengthen that relationship to the benefit of our health.

What do we do, however, to encourage that relationship when our health care system encourages fragmentation? Even if we had a single payer system, the variety of specialists, health care settings, and treatment o

ptions makes it unlikely that one person will see one provider for all – or even most? – of their health care needs. 

I try to outline one answer in my book, based on communication. Another answer, as many other people have proposed, has to do with portable electronic health records that are secure and located on reliable servers (the “cloud”). If we can’t be sure that our primary care provider has all our health care data, we can make sure that we do. 

But if that record is really to represent us, ourselves, we need to organize it differently than today’s electronic medical records. They should not be based on the individual visit, or the atomized problem list, but on our entire life and what we find important in it: the domains of our existence that we wish to optimize and ensure through good health.

Of course, a blog post is not the way to elaborate at length on what a record like this would look like. But little by little…