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Death By Stubbornness: What’s A Doctor To Do?

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Over the years that I’ve worked in acute inpatient rehab centers, I have been truly vexed by a particular type of patient. Namely, the stubborn patient (usually an elderly gentleman with a military or armed forces background). I know that it’s not completely fair to generalize about personality types, but it seems that the very nature of their work has either developed in them a steely resolve, or they were attracted to their profession because they possessed the right temperament for it. Either way, when they arrive in the rehab unit after some type of acute illness or traumatic event, it is very challenging to cajole them into health. I suspect that I am failing quite miserably at it, frankly.

Nothing is more depressing for a rehab physician than to see a patient decline because they refuse to participate in activities that are bound to improve their condition. Prolonged immobility is a recipe for disaster, especially in the frail elderly. Refusal to eat and get out of bed regularly can make the difference between life and death within a matter of days as leg clots begin to form, and infectious diseases take hold of a body in a weakened state. The downward spiral of illness and debility is familiar to all physicians, but is particularly disappointing when the underlying cause appears to be patient stubbornness.

Of course, the patient may not be well enough to grasp the “big picture” consequences of their decisions. And I certainly do not pretend to understand what it feels like to be elderly and at the end of my rope in regards to prolonged hospital stays. Maybe I’d want to give up and be left alone too. But it’s my job to get them through the tough recovery period so they can go home and enjoy the highest quality of life possible. When faced with a patient in the “wet cat” phase of recovery (I say “wet cat” because they appear to be as pleased to be on the rehab unit as a cat is to being doused against their will), these are the usual stages that I go through:

1. I explain the factual reasons for their admission to rehab and what our goals are. I further describe the risks of not participating in therapies, eating/drinking, or learning the skills they need to care for themselves with their new impairments.

2. I let them know that I’m on their side. I understand that they don’t want to be here, and that I will work with them to get them home as soon as possible, but that I can’t in good conscience send them home until it’s safe to do so.

3. I give them a projected discharge date to strive towards, with specific tasks that need to be mastered. I try my best to give the patient as much control in his care as possible.

4. I ally with the family (especially their wives) to determine what motivates them, and request their presence at therapy sessions if that seems fruitful rather than distracting. (Helpful spouse input: “Mike only wants to walk with me by his side, not the therapist.”)

5. I ask loved ones how they think the patient is doing/feeling and if there is anything else I can do to make his stay more pleasant. (Helpful input: “John loves ice cream. He hates eggs” or “John usually goes to bed at 9pm and gets up at 4am every day.”)

6. I meet with nursing and therapy staff to discuss behavioral challenges and discuss approaches that are more effective in obtaining desired results. (For example, some patients will always opt out of a task if you give them a choice. However, they perform the task if you state with certainty that you are going to do it – such as getting out of bed. “Would you like to get out of bed now, Mr. Smith?” will almost certainly result in a resounding “No.” Followed perhaps by a dismissive hand wave. However, approaching with a “It’s time to get out of bed now, I’m helping you scoot to the edge of the bed and we’re going to stand up on 3. One, two, three!” Is much more effective.)

7. If all else fails and the patient is not responding to staff, loved ones, or doctors, I may ask for a psychiatric consult to determine whether or not the patient is clinically depressed or could benefit from a medication adjustment. Typically, these patients are vehemently opposed to psychiatric evaluation so this is almost the “nuclear” option. Psychiatrists can be very insightful regarding a patient’s mindset or barriers to participation, and can also help to tease out whether delirium versus dementia may be involved, and whether the patient lacks capacity to make decisions for himself.

8. If the patient still does not respond to further tweaks to our approach to therapy or medication regimen, then I begin looking for alternate discharge plans. Would he be happier in a skilled nursing home environment where he can recover at a slower rate? Would he be amenable to an assisted living or long term care facility? (The answer is almost always a resounding “no!”) Is the patient well enough to go home with home care services and round-the-clock supervision? Does the family have enough support and can they afford this option?

9. At this point, after exhausting all other avenues, if the patient is still declining to move or eat or be transferred elsewhere, some sort of infection might set in. A urinary tract infection, a pneumonia, or bowel infection perhaps. Then the patient becomes febrile, is started on antibiotics, becomes weaker and less responsive, and is transferred to the medicine floor or higher level of care. Alternatively at this phase (if he is lucky enough not to become infected) the patient might have a cardiac event, stroke, blood clot with pulmonary embolus (especially if he is a large man), kidney failure, or develop infected pressure ulcers. Any of which can be cause for transfer to medicine. In short, if you stay in the hospital long enough, you can find a way to die there.

10. After much hand-wringing, angst, and generalized feelings of helplessness the wives and I review the course of events and ask ourselves if we could have done anything differently. “If I had acted like a drill sergeant, do you think he would have responded better?” I might ask. “No dear, that would only have made things worse.” She’ll reply. I’ll see how disappointed she is in his deterioration, staring off towards pending widowhood, engaging in self-blame and what-ifs (E.g. “If we had only had more money perhaps we could have taken him home with 24 hour nursing care until he was better…” “If I had cooked all his meals, maybe he would have gained enough strength to avoid the infection…” etc.) I try to be reassuring that none of this would have made a difference, myself reeling from the failure to get the patient home.

This 10 step process happens far more often than I’d like, and I certainly wish there were a way to head off the downward spiral with some kind of effective intervention. Would it help to have a volunteer unit of ex-military peer counselors in the hospital who could visit with my patients and help to motivate them to get better? (Operation “wet cat” perhaps?) Should I change my approach and put on my drill sergeant hat at the earliest stages of recovery to force these guys out of bed? Can educating younger law enforcement and military workers about illness help to prepare them to be more compliant patients one day?

I don’t know the cure for stubbornness, but it sure leaves a lot of widows in its wake.

The Magic Question That Every Patient Should Ask Their Doctor

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I realize that my blog has been littered with depressing musings on healthcare lately, and so I thought I’d offer up one very positive and “actionable” suggestion for all you patients out there. In the midst of a broken system where your doctor is being pressured to spend more time with a computer than listening and examining you, where health insurance rates and co-pays are sky-rocketing, and where 1 in 5 patients have the wrong diagnosis… There is one “magic” question that you should be asking your physician(s):

“What else could this be?”

This very simple question about your condition/complaint can be extremely enlightening. Physicians are trained to develop extensive “differential diagnoses” (a list of all possible explanations for a set of signs and symptoms) but rarely have time to think past possibilities 1 through 3. That’s one of the reasons why so many patients have the wrong diagnosis – which is both costly in terms of medical bills, time, and pain and suffering.

There is a risk in asking this question – you don’t want to be over-tested for conditions that you are unlikely to have, of course. But I maintain that the cost/risk of living with the wrong diagnosis far exceeds the risk of additional testing to confirm the correct diagnosis. So my advice to patients is to keep this very important question in mind when you see your doctor for a new concern.

In addition to asking this question of your doctor, you can also ask it during a second opinion meeting with another physician. The good news is that these days you don’t even need to get a second opinion in person. I myself have been working with an online second-opinion service called eDocAmerica for several years. Those who sign up for the service can pick the brains of board-certified U.S. physicians on any subject, 24-7 via email (and in some states via phone). The cost is extraordinarily reasonable when provided by employers, and winds up being about one or two dollars per member per month.

If you have a complicated disease or condition (such as cancer) where experts may not all agree on the best treatment plan, a company called Best Doctors offers detailed chart reviews and second opinions from top specialists at academic centers. Again, this service is quite affordable and reasonable if the cost is spread among a group. Employers are able to pay a small fee per employee per month to enroll the entire company in the service.

So why don’t all employers offer these benefits? I suspect that part of the reason is lack of awareness that second opinion services exist, and the other part is tepid demand on the part of employees. So if you’d like to make sure that you’re not one of the five people who have the wrong diagnosis, why not raise the question with your HR department? Enrolling as an individual is also an option, and still as inexpensive as about thirty dollars a month.

My bottom line: make sure you ask your doctor the magic question at least once for every new concern that you have. And if you’re too shy to do it, or your doctor’s answer seems too short, then get a second opinion online or in person.

This one little question could save your life.

Mean Patients: The Real Reason Why Physicians Are Quitting Medicine?

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A "Medical Service Provider"

As I sat in my orthopedist’s exam room, the discussion quickly turned from my chief complaint to his: “I don’t know why I’m doing this anymore,” he said. “Medicine is just not what it used to be, and I don’t enjoy my work anymore. The bureaucracy and regulations are bad enough, but what really gets me is the hostility. My patients are chronically angry and mean. The only comfort I get is from talking to other doctors. Because they all feel the same way.”

Perhaps this sentiment strikes you as the spoiled musings of a physician who is lamenting his demotion from “god” to “man” – reflecting the fundamental change in the public perception of doctors that has occurred over the past ~50 years. Or maybe you wonder if this surgeon’s patients are mean because he is a bad doctor, or isn’t respectful of their time? Maybe he deserves the hostility?

I’ve found this particular surgeon to be humble, thoughtful, and thorough. He is genuinely caring and a proponent of conservative measures, truly eager to avoid surgical procedures when possible. He is exactly what one would hope for in a physician, and yet he is utterly demoralized.  Not because of the hours of daily documentation drudgery required by health insurance and government regulators, but because the very souls he has been fighting to serve have now turned on him.  Their attitudes are captured in social media feeds on every major health outlet:

Doctors? I no longer afford that kind of respect: I call them “medical services providers.” They and their families and the medical cabal created this mess when they got control of med schools so that the wealth of a nation would remain in the hands of a few medical elites and their families. The very notion that doctors are smarter, more productive, more anything than others is ludicrous. They are among the worst sluff-offs of our society, yet the richest at the same time. It is an unreal world they have created themselves and they are now watching the natural outcome of such a false system.

The very best physicians have always been motivated primarily by the satisfaction of making a difference in their patients’ lives. That drive to “help others” is what makes us believe that all the sacrifices are worth it – the years of training, the educational debt, the lack of sleep, the separation from family, the delay (and sometimes denial) of becoming a parent, the daily grind of administrative burden, the unspeakable emotional toll that death and disease take on your heart… All of that is offset by the joy of changing and saving lives. But when that joy is taken from you, what remains is despondency and burn out.

What patients need to realize is that they have been (and still are) the primary motivator of physician job satisfaction. Patients have the power to demoralize us like no one else – and they need to take that power very seriously. Because if negative attitudes prevail, and hostility spreads like a cancer in our broken system, the most caring among us will be the first to withdraw.

And in the end all that will be left is “medical service providers.”

More Unintended Consequences Of Digital Data: How An EMR Gave My Patient Syphilis

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I used to be a big believer in the transformative power of digital data in medicine. In fact, I devoted the past decade of my life to assisting the “movement” towards better record keeping and shared data. It seemed intuitive that breaking down the information silos in healthcare would be the first logical step in establishing price transparency, promoting evidence-based practices, and empowering patients to become more engaged in their care decisions. Unfortunately I was very wrong.

Having now worked with a multitude of electronic medical records systems at hospitals around the country, one thing is certain: they are doing more harm than good. I’m not sure that this will change “once we get the bugs out” because the fundamental flaw is that electronic medical records require data entry and intelligent curation of information, and that becomes an enormous time-suck for physicians. It forces us away from human interaction, thus reducing our patients’ chances of getting a correct diagnosis and sensible treatment plan.

How bad is it? The reality on the ground is that most hospitals are struggling enormously with EMR implementation. There are large gaps in the technology’s ability to handle information transfer, resulting in increased costs in the hundreds of millions of dollars per small hospital system, not to mention the tragically hilarious errors that are introduced into patient records at break neck pace.

At one hospital, the process for discharging a patient requires that the physician type all the discharge summary information into the EMR and then read it into a dictation system so that it can be transcribed by a team in India (cheaper than US transcription service) and returned to the hospital in another part of the EMR. The physician then needs to go into the new document and remove all the typos and errant formatting so that it resembles their original discharge summary note. In one of my recent notes the Indian transcriptionist misheard my word for “hydrocephalus” and simply entered “syphilis” as the patient’s chief diagnosis. If I hadn’t caught the error with a thorough reading of my reformatted note, who knows how long this inaccurate diagnosis would have followed the poor patient throughout her lifetime of hospital care?

Another hospital has an entire wing of its main building devoted to an IT team. I accidentally discovered their “Star Trek” facility on my way to radiology. Situated in a dark room surrounded by enough flat panel monitors to put a national cable network to shame, about 40 young tech support engineers were furiously working to keep the EMR from crashing on a daily basis – an event which halts all order processing from the ER to the ICU. Ominous reports of the EMR’s instability were piped over the entire hospital PA system, warning staff when they could expect screen freezes and data entry blockages. Doctors and nurses scurried to enter their orders and complete documentation during pauses in the network overhaul. It was like a scene from a futuristic movie where humans are harnessed for work by a centralized computer nexus.

At yet another hospital, EMR-required data entry fields regularly interrupt patient throughput. For example, a patient could not be given their discharge prescriptions without the physician indicating (in the EMR) whether each of them is a tablet or a capsule. As patients and their family members stand by the nursing desk, eager to be discharged home, their physician is furiously reviewing their OTC laxative prescriptions trying to click the correct box so that the computer will allow the transfer of the entire prescription list to the designated pharmacy. When I asked about the insanity of this practice, a helpful IT hospital specialist explained that the “capsule vs tablet” field was required by Allscripts in order to meet interoperability requirements with our hospital’s EMR. This one field requirement probably resulted in hundreds of extra hours of physician time per day throughout the hospital system, without any enhancement in patient care or safety.

For those of you EMR evangelists in Washington, I’d encourage you to take a long, cold look at what’s happening to healthcare on the ground because of these digital data initiatives. My initial enthusiasm has turned to exasperation and near despondency as I spend my days as a copy editor for an Indian transcription service, trying to prevent patients from being labeled as syphilitics while worrying about whether or not the medicine they’re taking is classified as a tablet or a capsule in a system where I may not be able to enter any orders at all if the central tech command is fixing software instability in the Star Trek room.

Lack Of Information Synthesis: One Of The Most Important Causes Of Medical Errors

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As I travel around the country, working in the trenches of various hospitals, I’ve been struck by the number of errors made by physicians and nurses whose administrative burden distracts them from patient care. The clinicians who make the errors are intelligent and competent – and they feel badly when an error is made. However, the volume of tasks required of them in a day (many of which are designed to fulfill an administrative “patient safety” or “quality enhancement” process) makes it impossible for them to complete any task in a comprehensive and thoughtful manner. In the end, administrators’ responses to increased error frequency is to increase error tracking and demand further documentation that leads to less time with patients and more errors overall. It’s a vicious cycle that people aren’t talking about enough.

As I receive patient admissions from various referral hospitals, I rarely find a comprehensive discharge summary or full history and physical exam document that provides an accurate and complete account of the patient’s health status. Most of the documentation is poorly synthesized, scattered throughout reams of EMR-generated duplicative and irrelevant minutiae. Interpreting and sifting through this electronic data adds hours to my work day. Most physicians don’t bother to sift – which is why important information is missed in the mad dash to treat more patients per day than can be done safely and thoroughly.

I have personally witnessed many critical misdiagnoses caused by sloppy and rushed medical evaluations. I have had to transfer patients back to their originating surgical hospitals (at some of America’s top academic centers) for further work up and treatment, and have uncovered everything from cancer to brain disorders to medication errors for patients who had been evaluated and treated by many other specialists before me. No one seems to have the time to take a long hard look at these patients, and so they end up undergoing knee-jerk treatments for partially thought through diagnoses. The quality of medical care in which I’ve been engaged (over the past 20 years) has taken a dramatic turn for the worse because of volume overload (fueled by diminishing reimbursement) in the setting of excessive administrative and documentation requirements.

To use an analogy – The solution to the healthcare cost crisis is not to increase the speed of the assembly line belt when our physicians and nurses are already dropping items on the floor. First, stop asking them to step away from the belt to do other things. Second, put a cap on belt speed. Third, insure that you have sufficient staff to handle the volume of “product” on the belt, and support them with post-belt packaging and procedures that will prevent back up.

What we require most in healthcare is time to process our thoughts and engage in information synthesis. We must give physicians the time they need to complete a full, comprehensive, evaluation of each patient at regular intervals. We need nurses to be freed from desk clerk and safety documentation activities to actually inspect and manage their patients and alert physicians to new information.

Until hospitals and administrators recognize that more data does not result in better care, and that intelligent information synthesis (which requires clinician time, not computer algorithms) is the foundation of error prevention, I do not foresee a bright future for patients in this manic assembly line of a healthcare system.

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