A new decade and a new EMR are making me think about what the best use of my time and medical knowledge really is. The thing that stands out more and more for me is the tension between what my patients are asking me for and what the medical bureaucracy is mandating me to do. This is, to be blunt, an untenable, crazy-making situation to be in.
Many of my patients with chronic diseases don’t, deep down, want better blood sugars, BMIs or blood pressures – nor do they want better diets or exercise habits. People often hope they can feel better without fundamentally changing their comfortable, familiar and ingrained habits – that’s just human nature.
I went to medical school to learn how to heal, treat and guide patients through illness, away from un-health and toward health. I didn’t go to school to become a babysitter or code enforcement officer.
given the frequency of seeing death and grief depicted in the media or through
real life encounters with friends, relatives, neighbors, or patients? These
incidents trigger uncomfortable and sometimes uneasy thoughts of how we might
personally deal with potential illness and disease. The same thoughts are soon
displaced by the busyness of living.
dealing with the death of his mother from a brain tumor, we learn David
Fajgenbaum was healthy, living life to its fullest, and a future doctor in the
making. He may have thought about his own mortality as he grieved the death of
his mother, but likely never imagined anything dire would happen to him.
Fajgenbaum was pushing forward on several fronts, including leading a
non-for-profit organization for grieving college students, symbolically named
“Actively Moving Forward” or “AMF” after his mother’s initials, all while first
playing college football and then attending medical school. By all accounts,
this was a vigorous young man, meticulous about his diet and physicality. When he became ill, it was a blunt reminder
that life is unpredictable.
In his book “Chasing my Cure”, Dr. Fajgenbaum takes us back to the time when he first got ill. He vividly describes his physical symptoms and various scans which detected his enlarged nodes. Interestingly, we learn how long he was in denial of these symptoms, thereby delaying medical attention in favor of studying. This neglect of self-care highlights part of his personality, but also represents the pressure and expectations placed upon a majority of medical students.
It took some doing, but I had finally
made it to Bobby’s home.
It was a rowhome tucked into one of those
little side streets in the city that non-city folks wouldn’t dream of driving
down. As I step in, I’m met by the usual set up – wooden steps that hug the
right side of the wall leading up to the second floor. Bobby certainly hasn’t made it up to the
second floor in some time. At the moment she is sitting in her hospital bed in
the living room. The bed is the focal point to a room stuffed to the gills with
all manners of stuff. At least three quarters of the stuff seems to be food.
Cinnamon buns, Doritos, donut holes, chocolate frosted Donuts, crackers,
Twinkies. The junk food aisle at Wawa would be embarrassed by the riches on
Bobby weighs in at four hundred pounds, 5
foot 5 inches. She has a tracheostomy from multiple prior episodes of
respiratory failure that have required ventilatory support. I’m here at the
request of a devoted primary care physician that still makes home calls. I’ve
looked through the last number of hospital stays. The last few discharge
summaries are carbon copies of each other. Hypoxemic respiratory failure
related to pulmonary edema complicated further by morbid obesity. Time on the
vent. Antibiotics. Diuretics. Home. Return to the hospital 2 weeks later. The
last echocardiogram done was 3 admissions ago. A poor study. Not much could be
seen due to ‘body habitus’.
I sit on the side of the bed trying to acquire my own images of her heart. I talk to her as I struggle. Bobby is 58, the youngest of three sisters, and the only surviving member of the family. Her elder sisters died of respiratory complications as well. They both died with tracheostomies. The conversation is circular. The problem according to Bobby is the tracheostomy. Everything was fine before that. I explain that a prolonged period of time on the ventilator on a prior admission prompted the tracheostomy, and that the multiple recent admissions to the hospital that required a ventilator seemed to validate that decision. She doesn’t waver. Both her sisters died shortly after they got tracheostomies. Bobby thinks the physicians taking care of her sisters had a hand in their demise. “They didn’t care.” “We told them they were sick.”
Last week a nurse posted a video of
herself on Twitter mocking patients with the caption “We know when y’all are
faking” followed by laughing emojis. Twitter responded with the hashtag #patientsarenotfaking,
created by Imani Barbarin, and
a slew of testimonials of negligent medical care. While the nurse’s video was
not explicitly racialized, plenty in the black community felt a particular
sting: there is clear evidence that this attitude contributes to the problem of
black patients receiving substandard care, and that negative behavioral traits like faking or exaggerating symptoms are more likely
to be attributed to black patients. The problem is so bad that it turns
out racial bias is built right into an algorithm widely used by
hospitals to determine patient need.
Since we can’t rely on the system or
algorithms, many health organizations and the popular media encourage patients to
themselves and their loved ones by, for example, asking questions, asking for second (or more) opinions, “trusting [their] guts,”
and not being afraid to speak up for themselves or their loved ones. But this
ubiquitous advice to “be your own advocate” doesn’t take into account that not
all “advocacy” is interpreted in the same way—especially when the advocacy
comes from a black person. Sometimes a patient’s self-advocacy is dismissed as
“faking;” sometimes it is regarded as anger or hostility.
Black male faces showing neutral expressions are more likely than white faces to be interpreted as angry, violent, or hostile, while black women are often perceived as ill-tempered and angry. These stereotypes can have a chilling effect on a person’s decision to advocate for themselves, or it can prompt violent reaction.
No one likes getting bills. But there is something that stinks particularly spectacularly about bills for healthcare that arrive despite carrying health insurance. Patients pay frequently expensive monthly premiums with the expectation that their insurance company will be there for them when illness befalls them.
But the problem being experienced by an
increasing number of patients is going to a covered (in-network) facility for
medical care, and being seen by an out-of-network physician. This happens because
not all physicians working in hospitals serve the same master, and thus may not
all have agreed to the in-network rate offered by an insurance company.
This is a common occurrence in medicine. At any given time, your local tax-exempt non-profit hospital is out of network of some low paying Medicaid plan or the other.
In this complex dance involving patients, insurers and doctors, Patients want their medical bills paid through premiums that they hope to be as low as possible, Insurers seek to pay out as little of the premium dollars collected as possible, and Doctors want to be paid a wage they feel is commensurate to their training and accumulated debt.
Insurers act as proxies for patients when
negotiating with the people that actually deliver healthcare – doctors.
Largely, the system works to funnel patients to ‘covered’ doctors and
hospitals. Patients that walk into an uncovered facility are quickly
redirected. But breakdowns happen during emergencies.
There are no choices to make for patients arriving unconscious or in distress to an emergency room. It suddenly becomes very possible to be seen by an out of network physician, and depending on the fine print of the insurance plans selected, some or none of these charges may be covered.
It is well known by now that a physician’s demeanor influences the clinical response patients have to any prescribed treatment. We also know that even when nothing is prescribed, a physician’s careful listening, examination and reassurance about the normalcy of common symptoms and experiences can decrease patients’ suffering in the broadest sense of the word.
This has been the bread and butter of counselors for years. People will faithfully attend and pay for weeks, months and even years of therapy visits just to have an attentive and active listener and to feel like they have an ally.
We also have data that shows that adherence to treatment plans is dependent on how patients feel about their provider. One problem solved can build an ally for life
Primary care medicine is a relationship based business. I don’t know how often that basic fact is overlooked or denied. Whether you are trying to get another person to alter their lifestyle, take expensive medicines according to inconvenient schedules or even just trust and accept your diagnosis, you have to “earn” the right to do those things. Our titles and medical accoutrements give us a foot in the door, but they don’t usually get us all the way into peoples inner circles of trusted advisers.
In this age of corporate medicine, there is a belief that patients attach themselves to institutions and networks because of their trust in the organizations, and that therefore the connection with their individual providers is secondary.
I scribbled my signature on a pharmaceutical rep’s iPad today for some samples of Jardiance, a diabetes drug that now has expanded indications according to the Food and Drug Administration. This drug lowers blood sugar (reduces HbA1c by less than 1 point) but also reduces diabetes related kidney damage, heart attacks, strokes and now also admission rates for heart failure (from 4.1% to 2.7% if I remember correctly – a significant relative risk reduction but not a big absolute one; the Number Needed to Treat is about 70, so 69 out of 70 patients would take it in vain for the heart failure indication. The NNT for cardiovascular death is around 38 over a three year period – over a hundred patient years for one patient saved). There are already other diabetes drugs that can reduce cardiovascular risk and I see cardiologists prescribing them for non-diabetics.
It’s a bit of a head scratcher and it makes me think of the recently re-emerged interest in the notion of a “Polypill” with several ingredients that together reduce heat attack risk. The tested Polypill formulations are all very inexpensive, which is a big part of their attraction. Jardiance, on the other hand, costs about $400 per month.
The “rep” asked whether this medication would be something I’d be likely to discuss with my diabetic patients.
“Well, you know I’ve only got fifteen minutes…” dampened his expectations. But I told him about the Polypill studies. I think patients are still not ready to make the distinction between on the one hand medications that treat a more or less quantifiable problem like blood sugar levels, blood pressure or the much less straightforward lipid levels and on the other hand ones that only change statistical outcomes. Most of my patients have trouble wrapping their head around taking a $400 a month pill that doesn’t make them feel better or score a whole lot better on their lab test but only changes the odds of something most people think will never happen to them anyway.
I am a naturopathic doctor, and because I operate outside of insurance-based medicine, I have, what most healthcare providers would consider, lots of time with my patients. My typical first patient appointment is 90 minutes long and my follow-up visits are 30 minutes long.
What, you may ask, do I do with all this time? I get to know my patients by listening to their stories, their concerns and their hopes. We delve into their health concerns, we review their medical records, and we explore lifestyle-based strategies to optimize their healing and wellbeing.
In short, I listen and apply what I know in partnership with each patient with the goal of empowering them towards greater wellness. Over and over, I hear from my patients how unusual this is. They speak about the 5-minute visits with their doctors that feel rushed and disconnected. They express frustration and dismay about being a diagnosis, not a person, when seeing their healthcare providers.
A recent survey conducted by the New York Times found that two-thirds of Americans support some form of change to the current healthcare system and favor moving towards greater insurance coverage for all. My experience for almost 25 years leads me to conclude that underlying this vision of healthcare is a deep-seated desire for patients to be cared for and listened to.
I strongly believe that getting people the information and incentives necessary to choose higher-value providers and insurers is the solution to improving value in healthcare (see my Healthcare Incentives Framework). But, you say, we’ve tried that and it doesn’t work, and current efforts are a waste of time!
Here’s an example of some great research that you might use to support your opinion:
The news media would see this and report the main findings–that only 3% of enrollees used Aetna’s price comparison tool–and argue that even people who have the opportunity to shop for care will not do it, which they will interpret to mean any “consumer-driven” healthcare effort is proven through evidence not to work. People can wrest information to prove whatever they want.
But what if you actually read the study?
Sinaiko and Rosenthal found that only about 60% of enrollees even had a claim during their study period. And of those 60%, I’m guessing a large percentage of those were outpatient visits (primary care or specialty) with established providers, which are claim types that people historically do not shop for. Think about it, if you have your favorite hairdresser who knows you best, you have a relationship with that person, and you like how they cut your hair, are you going to price shop every single time you need to get your hair cut?
In the last fifteen years, we have witnessed dozens of natural disasters affecting our most vulnerable patients, from post-hurricane victims in Haiti to drought and famine refugees in Malawi. The vast majority of these patients suffered from acute on chronic disasters, culminating in life-threatening medical illnesses. Yet, during the course of providing clinical care and comfort, we rarely, if ever, pointed to climate change as the root cause of their conditions. The evidence for climate change is not new, but the movement for climate justice is now emerging on a large scale, and clinicians should play an active role.
Let’s be clear: there is no such thing as an “equal opportunity”
disaster. Yes, climate change poses an existential threat to us all, but not on
equal terms. When nature strikes, it has always been the poor and historically
underserved who are most vulnerable to its wrath. Hurricane Katrina provides an
example of how natural disasters target their victims along racial and
socioeconomic lines even in the wealthiest nations. Writes TalkPoverty.org, “A black homeowner in New Orleans was more than three times as
likely to have been flooded as a white homeowner. That wasn’t due to bad luck;
because of racially discriminatory housing practices, the high-ground was taken
by the time banks started loaning money to African Americans who wanted to buy
a home.” Throughout the world, historically marginalized communities have been
pushed to overcrowded, poorly-built, and unsanitary neighborhoods where natural
disasters invoke much greater harm.