The R Word

Good Life by Sveta Dorosheva

There’s a word whose absence has been conspicuous in the healthcare commentary lately. It is no accident. The word is relationship, as in the much-beleaguered physician-patient relationship. It’s out of favor. Even in psychiatry, where many of us are fully opted-out, the third parties are aggressively encroaching and creating conflict. I’m going to attempt to translate some of the intentionally confusing verbiage I see as workarounds for the R word. The only encouraging development is that patients may be starting to question what is going on. Patients really stand to lose a whole lot, so we all really need to start reading between the lines.

The other R word people really don’t like in health care is rationing. These two words are not unconnected. Rationing is here to stay, though. The mechanisms are currently opaque.

All these euphemisms like “co-creation” and “consumer engagement” are a steep downgrade for the physician-patient relationship. I can’t imagine how a physician who sees patients could say these words with a straight face. We know what it means to be responsible for peoples’ lives. If you are accustomed to thinking all the time about what could go wrong, how you will fix it and how something like that could potentially end your career in 30 seconds, lots of triangulated metaphorical diagrams and catch phrases about medicine look like confused public relations strategies.

Who only knows what “patient-centered” means, but I have come to distrust that one too. Patient satisfaction as a metric has become weaponized against doctors in a way that creates cycles of backlash in the relationship, instead of improvement in communication. It needs to be reconceptualized. Giving in to unreasonable patient demands is poor care that improves patient satisfaction, unfortunately. That problem was predictable and it’s dangerous. What I thought was patient-centeredness seems to have been co-opted.

Patients, above all, need to be able to trust that their doctor is putting their needs first, even if it’s not pleasant, and they may not always be delighted with how things go. They do generally know this. As that trust starts to erode, distractions and tangents about hospital food and sheet thread counts surface and just sound like less important issues more easily addressed than trust. When the foundations of medical care are deteriorating, nothing can make up for it, not even comfort or convenience. Helping patients to prioritize and understand how they can best promote their health while addressing their concerns is our job. Their comfort and satisfaction with care will vary due to many factors and should be considered, but not weaponized. Their true outcomes may not be appreciated for years, so measuring short-term concerns and complications that may ultimately be artifact seems really dangerous.

The “teamwork” that gets promoted sounds good on the surface, but I fear it is just about dilution of care and confusion about responsibility, which also erode the trust in the physician-patient relationship. Patients are starting to see that. When they want to see the doctor they tend to want the doctor. When they need help, it is our job to help them. That is the nature of the relationship. Is it a team? Of course.

The reinvention/creative destruction of this relationship has a few key dark motives. Most importantly, because third parties want physicians to ration care covertly as financial “stewards,” physicians will need to transition rapidly from doctors of individuals to population health managers. Third parties hope this will be achieved efficiently with punitive payment systems. It is important that the doctors be set up directly to take the fall for problems in the new model. Every patient is now a medico-legal as well as a financial risk. Right there you can see how the relationship is headed for trouble.

A focus on an individual patient is a hindrance to population health management. It might cause a decision to be out of line with a guideline or algorithm, or cost more. The way to control doctors’ decisions is apparently to decide that if a decision is not standardized, it isn’t “quality.” “Quality” has to be measurable, if payment by third parties links quality to financial risk, so it is now the ultimate relationship sledgehammer. One quasi-workaround has been to try to standardize the process of “shared decision-making” and measure that too, but this too strikes me as a semi-charade. All of this standardization is a mockery of the profession of medicine to work around that R word. That is the central strategy, unraveling the relationship, the way I see it. Mixed messages will often conceal this.

Turning clinical care into data collection, which can then be used to punish physicians (“risk”) and thereby cut costs, is the urgent agenda being aggressively promoted as helping patients in the long-term, while in the short term it erodes care. Information that gets collected in medicine may identify epidemics, genes or trends. Patient are really not that interested. They want someone they trust to help them in real-time, first. They are right.

The push for people to demand their data is one propaganda tool the data evangelists like, since it will then be easiest for third parties to access. It’s currently probably waste of patients’ time. Reams of EHR data have little value except for purposes of insurance denials or lawsuits. They don’t explain disease or treatment for patients. Correcting any history errors could be done on patients’ time if they are interested, but we really should focus on improving the accuracy by radically simplifying the whole tool. Patients don’t want to do data collection either, of course. Unless its free and passive, and even then they will have privacy concerns.

Patients, unfortunately, will have to learn not to trust much of what they will be reading these days about Medicare, quality, digital health, telemedicine, electronic medical records and value-based payment. It is an opaque agenda with a bundle of risky bets tied together and dressed up as this wave of futurism in health care, to distract from what is being lost.

There is so much at stake and so many people now getting paid to usurp, thwart, lecture, test and consult on various aspects of this hydra we call “healthcare” that one of the most critical features of real patient care, the physician’s progress note, has been replaced and repackaged as “data,”much of it currently erroneous and created by templates. This is a perversion of our vital work, the consequences of which are unseen as yet. Because there is very poor security in health IT, the structured data is getting stolen and hacked, but, in the meantime, the entire function of physician documentation was disabled. We can no longer trust our notes that we can barely skim. If patients fully understood that we had already traded a backbone of good continuous care for inaccurate structured data, and they had traded being a patient for being a member of a population with very little privacy they might be concerned. Many of them are still getting misled about the bright shiny automated future.

Personally, I see no value in seeing my own structured data. Most patients never consent to be research subjects, and because there is no time to digress anyway into checklists, vast portions of the EHR should really be scrapped. Writing notes with patients, another hard sell, seems to be potentially a colossal waste of time and a major interference with care. The note is not the interaction. Conflating the two is confusing people. Some innovative EHRs in direct primary care manage simultaneity, as long as no coding has to be done for insurance. Coding is tremendously wasteful and burdensome.

However the data dictators will spin this wave of the revolution, with its golden promises, doctors will still see unlimited extra uncompensated work and change fatigue piggybacking onto an already difficult job. I see it not working out for a lot of us, which will deprive patients of options. Expectations are extremely unrealistic.

As far as “co-creation” goes, that word seems to have a lot of agendas. Some of it is about creating confusion about the physician-patient relationship and trying to mislead patients into thinking they have choices they may not have, only to set them up for disappointment. It also implies a social demotion of doctors, I think. I am all for proactive, informed, motivated, health-literate patients but this is not about that because we can definitely promote that, especially when we have time with patients. We do it whenever possible. Managing expectations is important, too.

A strategy for devaluing the R word is to ramp up vilifying doctors, by highlighting egregious medical paternalism. Clearly many people are hurt and angry and they need to be heard. This campaign public distorts, oversimplifies and very effectively sows new seeds of distrust. It is gaining momentum and gathering support from people harboring various grudges and resentments about turfs. It isn’t producing anything constructive, from what I see. It makes dialogue difficult when people approach doctors with general hostility, baiting and waiting for an opportunity to pounce.

This R word clearly is a huge threat to the futurists because this hostility they are fomenting is totally counter-productive for empathic patient care. Attending to communication issues in the relationship has always been part of a doctor’s job. Its much harder to communicate when the relationship is fraying. Devaluing and vilifying clearly is about some other agenda than improving care, because it is destructive to the conversation.

I believe this vague “co-creation” framework also has to do with trying to encourage patients to refuse screenings and potentially unnecessary care (typically framed as harm). We need to rein in unnecessary tests and care but the lines are grey and defensive medicine is sadly still necessary. This sort of less-is-more-always medicine is sometimes called “choosing wisely” by people who don’t know or don’t care where the money for that program comes from. Patients who are either very health-literate or not particularly health-literate may be swayed into refusing things. It is an ethically bankrupt way to interact with patients, but Medicare will soon reward this and punish doctors when they fail at it. There goes the relationship again. If anyone wants to rein in the malpractice attorneys that would go a way towards pruning some waste, but this is unlikely in many states.

Generally, patients actually want us to help support them understanding healing and health. This idea that we manage to avoid the appearance of rationing by learning to promote the agenda of half-educated self-rationing by patients is irresponsible. We have the skills to interpret and distill complex information and help guide them. Patients often need the opportunity to ask for more information and guidance before they make a choice, which can be time-consuming. It will be very difficult when their choices and behaviors get their doctor penalized, and there often will be no other choice than to take penalties or let patients go.

As far as the “engagement” theme,  there seems to be a strong agenda about getting patients to use unproven technology first, since doctors don’t generally invest voluntarily in unproven time-consuming expensive technology. Some patients are interested but, mostly, they are wisely waiting to be told why it’s going to help them and how, for which there is often little evidence and huge learning curve. I am always looking for new things that will help my patients. Generally we all are.

While I, too, am excited about the future of things like genomics, AI and VR, this fantasy of digital health that is going to quickly revolutionize health literacy and change all sorts of complex behavior via downloaded apps is hype. It is also creating all sorts of confusion about privacy and data ownership, and who is responsible for this data. Trying to sell these things as cost-saving anytime soon is also dubious. Someday there will be lots more tools for enhancing care via phones and tech but for now we have big basic gaping holes in care.

The dialogue about health IT so far has, sadly, provided mostly a distraction from the problems of actual practice of patient care in real time. For example, asynchronous video is not patient care. It is video. Telemedicine consultations with other doctors, rebranded as “collaborative care” where there are dire psychiatrist shortages, isn’t what I would call patient care either. All of this stuff is data collection piggybacking onto difficult workarounds for care shortages. We have blurred some important lines. These ideas may have merit but the fundamentals are so troubled that they look like bandaids, while important obvious problems are ignored.

As far as the much-touted evils of fee for service, I would never try to convince anyone that it doesn’t increase demand and consumption, or lead to waste. But as far as the even less well-understood evils of value-based care I am terrified. I cannot see how that doesn’t turn into extreme rationing versus forced charity care, where the payment mechanism conflicts even more dangerously with our ethical duty to the patient, as well as our survival.

I don’t see how a private practice that doesn’t have armies of employees chasing down revenue and metrics is going to survive. All of this wave of unproven futurism sounds like layers of waste, overhead and overwhelm that will lead to a bankruptcy. Trapped, the struggling independent doctors will not be able to afford all of the help for this “help.” The waste in this model is at least equally bad for patients as the waste in fee for service. It will raise administrative costs prohibitively. One model suggests every doctor hire “a digitalist.” I don’t understand where people think that money is going to come from when Medicare looks to be insolvent in 5 to 10 years.

People liked having what will be remembered as private doctors, especially when they don’t feel well. Good care can be found in many settings but they do like an office with doors that stay shut. They like someone who doesn’t type and is listening very carefully, not rushing or multitasking. They do find slow eprescribing an invasion, dislike watching us click through screens, check databases, troubleshoot technology issues. They like personalized treatment that is tailored to them and they like explanations of why this but not that. They like suggestions for books, websites, apps and all sorts of other help. They don’t always find this stuff themselves. They like to be taught things about health and disease and supported in how to self-advocate, research and navigate complexity in health care when they become ill, but this takes a lot of time. They like “their” doctor to speak with lots of collaterals. They like that, if necessary, they can call and reach their doctor, although, probably not as often as before. They like doctors who do things like arrange referrals, even in foreign countries, when they move, and carefully recommend other good doctors for their family and friends.

All of that, though, will be coming to a halt. If (when) we have a mandated single payer type insurance, with proliferating mandates and shrinking payments, requiring that we learn and report busywork measures, buy and learn massive amounts of technology and software, respond in real time to every data blip and every demand, unable to hire bloat to fight bloat, many of us will give up overnight. It will be impossible to manage the chaos and stay solvent. All the wonderful personalized attention will have to go, immediately.

Hiring scribes or robots is not an option for many of us. Hiring any help can be prohibitive. Forcing us to join ACOs is the obvious agenda, so that third parties can control the decisions and have access to the data. It always comes back to that.

Even the people who really want to pay privately for care might have trouble finding someone who can still make the back office of an independent private practice work because of proliferating government mandates and the relentless pursuit of data. It is difficult to completely sever from third parties unless people are willing to pay cash for medications, labs and all sorts of other things. Maybe direct primary care combined carefully with high deductible health plans can save some specialties in some areas.

So when these foundations talk in the news about how they are improving medical professionalism, standardizing quality, measuring value and ensuring safety, I think what they really mean sadly is they have re-invented medicine without the physician-patient relationship because a whole lot of people are cashing in on measurements, test-taking, reviews, credentialing, co-opted physician and patient data via EHR and apps and calling it value, quality, innovation, population medicine, payment reform and digital health.

I would be more than delighted for some helpful innovations and would pay for them. There is plenty of room for IT innovation that helps patient care. My fellow physicians have written extensively about how EHR could be improved. But the EHR is a population research tool, not a functional medical record, so doctors’ opinions are irrelevant, apparently. It is not that doctors don’t like technology. We just can’t trust the agenda. It isn’t about patients or doctors.

People will just keep proposing ideas in medicine that have nothing to do with what patients need, rather the opposite, but carefully couched and parsed, and by the time the public really figures this out it will be too late. Major improvements would need to start with improving fundamental structural issues and failures. I don’t see magical shortcuts that ignore that.

The Tinders of healthcare, the holy grails, or the jackpots, whichever set of them is in vogue this week, will now be mostly disappointments to patients. Patients’ needs are complex and nuanced. They change constantly and it is hard enough to be a good doctor without all of the terrible interference. There is no “engagement” drug or magic. The approach so far to reinvent healthcare is to coerce poorly conceived politically-driven ideas fast into a very unmanageable reality. Coercing people is not innovation and can cause unintended consequences.

Anyone who cares for patients knows that although these solutions/ disappointments are being crafted by third parties, it is we the physicians who will be blamed when things don’t go well. We are used to that. It always is, because, for us, that primary fundamental duty to patients, intrinsic to the unique relationship, isn’t going to change because of how doctors get tested, reviewed, micromanaged, measured, paid or penalized. If it does, we all really will have a whole new universe of problems.