By CHADI NABHAN
She was a successful corporate lawyer turned professional volunteer and a housewife.
He was a charismatic, successful, and world-renowned researcher in gastrointestinal oncology. He was jealous of all breast cancer research funding and had declared that disease his nemesis.
They were married; life was becoming a routine, and borderline predictable. Both appeared to have lost some appreciation of each other and their sacrifices.
Then, she saw a lump, and was diagnosed with breast cancer. Not any breast cancer, but triple negative breast cancer. The kind that is aggressive and potentially lethal. The year was 2006, and their lives was about to change forever.
This is the story of Liza and John Marshall, who decided after 15 years of Liza’s diagnosis to disclose all, get all their secrets out in the open, and “off their chests”. They did so by writing a book that I read cover to cover and could not put down.
The authors decided to not only share their cancer journey as a patient and a caregiver, but also to share much of their personal and intimate details. They wanted us to know who they are as people, beyond patient and oncologist husband. We got to know how they met, when they met, and how they fell in love from the first sight. We got to know some corky personal details, and as a reader, I felt that I was part of their household. John shares how losing his mother at a young age to lymphoma affected him personally and professionally. We learn that they attend church every Sunday. Both are people of faith and they let us know how their faith helped them during these challenging times. Losing a dear friend to breast cancer took a toll and certainly made them less certain whether Liza’s fate would be any different.
They alternate writing chapters so that we get to know various events and stories from their sometimes-opposing points of view. We get to understand how a cancer diagnosis affects a caregiver, who happens to be a busy academic oncologist with little time to spare in between clinical practice and traveling for his work. At some point, John expresses resentment that all of the attention was being diverted towards his wife -the patient- and that he was left alone with few people caring how he felt and what struggles he was going through.
By HANS DUVEFELT
Today a patient told me a cancer doctor had told her husband that he only had a year to live. She was angry, because she felt that statement robbed her husband of hope and she knew well enough that doctors don’t always know a patient’s prognosis in such detail.
“Would you want to know if you only had a year to live”, she asked me.
I thought for a moment and then answered that I probably would want to know. I explained that I would want to make decisions and provisions because I live alone and am responsible for my animals. As I told her, I am well aware that if I dropped dead right now, things would be pretty chaotic for a while.
Two and a half years ago, I wrote a post titled Be the Doctor Each Patient Needs. In it I presumptuously coined the phrase I later put right on top of the sidebar of this blog:
Osler said “Listen to your patient, he is telling you the diagnosis”. Duvefelt says “Listen to your patient, he is telling you what kind of doctor he needs you to be”.
I still believe we need to be incredibly sensitive to all the verbal and nonverbal clues our patients give us about what they need. In my 2018 post, I used the analogy of being like a chameleon. That’s not the same as being dishonest. It is a matter of knowing that your education and title give you an authority, an opportunity and an obligation to use your position of trust in your patient’s life to say things they need to hear in order to carry on or perhaps to take the first step in a new direction. We all wear the mantle of a superhero in a sense, and we can use this symbol for good. But that carries a responsibility to use our powers wisely.
By HANS DUVEFELT
Words can be misleading. Medical terms work really well when shared between clinicians. But we can’t assume our patients speak the same language we do. If we “run with” whatever key words we pick up from our patient’s chief complaint, we can easily get lost chasing the wrong target.
Where I work, along the Canadian border, “Valley French” expressions tripped me up when I first arrived. The flu, or in French le flu (if that is how you spell it – I’ve never seen it in writing) is the word people use for diarrhea. Mal au cœur (heart pain) doesn’t mean angina or chest pain, but heartburn, a confusing expression in English, too.
But even if we are all English speaking, clinicians need to be careful not to assume common words mean the same to everyone.
I have seen many patients complain of anxiety, but not actually be worried about anything. A number of bipolar people have used the word anxiety when, in my personal vernacular, they are really describing pathological restlessness. I once had a patient complain of “nerves” but not have a worry in the world except for his hereditary essential tremor, which he assumed was a sign of untreated anxiety.
People often resist my labeling their symptom as chest pain, insisting that I am wrong about the location and the character of their discomfort. Instead, they might insist it is indigestion or prefer pressure, tightness or heaviness in their throat, epigastrium or even between their shoulder blades. “Chest pain is shorthand for all that”, I tell them.
I hear people use the word dizzy for a gnawing feeling in their epigastrium, and nauseous for a sense of early satiety after eating.
By HANS DUVEFELT
1) EXERCISE MORE
I talk to people almost every day who think they can lose weight by exercising. I tell them that is impossible. I explain that it takes almost an hour of brisk walking to burn 100 calories, which equals one apple or a ten second binge on junk food. To lose a pound a week, you need to reduce your calorie intake by about 500 per day – that would be the equivalent of five hours of moderate exercise every day. We’d have to quit our jobs to do that.
2) EAT MORE FRUITS AND VEGETABLES
The other fallacy I hear all the time is that, somehow, adding “healthy” fruits and vegetables can make a person lose weight. I tell them that adding anything to their daily calorie intake will have the opposite effect. I more or less patiently explain that our job is to figure out what to take away instead of what to add. Maybe substituting a fruit for a Whoopie pie is healthy in other ways, but it has almost nothing to do with weight loss.
3) EAT BREAKFAST
A third fallacy is that eating a healthy breakfast will ensure weight loss. To explore this one, I ask: “Are you often hungry?”
So many of my overweight patients deny ever feeling hungry – that gnawing feeling in the pit of your stomach and the low blood sugar onfusion and weakness I feel by 9 or 10 am after doing barn chores on an empty stomach (only coffee).
When I hear “I never feel hungry”, I don’t recommend starting a good breakfast habit because that would likely increase a person’s daily calorie intake. But when I hear that a breakfast skipper goes for the doughnuts mid morning due to hunger, I certainly recommend eating breakfast. When I do, I always point out that the typical American cereal and banana breakfast, along with soft drinks, is actually the major reason for our obesity and diabetes epidemics.
By HANS DUVEFELT
Primary Care is now mandated to screen for depression, among a growing host of other conditions. That makes intuitive sense to a lot of people. But the actual outcomes data for this are sketchy.
“Don’t order a test if the results won’t change the outcome” was often drilled into my cohort of medical students. Even the US Public Health Service Taskforce on Prevention admits that depression screening needs to take into consideration whether there are available resources for treatment. They, in their recommendation, refer to local availability. I am thinking we need to consider the availability in general of safe and effective treatments.
If the only resource when a patient screens positive for depression is some Prozac (fluoxetine) at the local drugstore, it may not be such a good idea to go probing.
The common screening test most clinics use, PHQ-9, asks blunt questions about our emotional state for the past two weeks. This, in my opinion, fits right into the new American mass hysteria of sound bites, TikTok, Tweets, Facebook Stories, instant messages, same-day Amazon deliveries and our worsening pathological need for stimulation and instant gratification.
By HANS DUVEFELT
This may come as a surprise for people with business degrees:
Doctors don’t really care when a test was ordered. We care about our patient’s chest X-ray or potassium level the very moment the test was performed. We also don’t care (unless we are doing a forensic review of treatment delays) when an outside piece of information was scanned into the chart. We want to know on which day the potassium was low: Before or after we started the potassium replacement, for example.
In a patient’s medical record, we have a fundamental need to know in what order things happened. We don’t prefer to see all office visits in one file, all prescriptions in another and all phone calls in a third. But that seems to be how people with a bookkeeping mindset prefer to view the world. In some instances we might need that type of information, but under normal clinical circumstances the order in which things happened is the way our brains approach diagnostic dilemmas.
Yes, I have said all this before, but it deserves to be said again. Besides, only 125 people read what I wrote about this six weeks ago, while almost 10,000 people read my post about doxepin.
Patients’ lives are at stake and, in order to do our job, we need the right information at the right time, in the order we need it, even if the bookkeepers prefer it a different way.
By HANS DUVEFELT
Almost every day I catch a suspicious fax needing my signature. Often it is an out of state vendor who wants my permission to provide a back brace for a diabetic patient, a continuous blood glucose monitor for a non-diabetic or a compounded (custom made) ointment of some sort that makes no sense from what I know of that patient’s history.
Often, I get a fax appearing to be from Walgreens, just asking me to sign and certify that so-and-so is under my care. Those faxes have Walgreen’s logo, my patient’s correct address and my own DEA and NPI numbers already printed. The problem is that 90% of my patients don’t use Walgreens 20 miles north or south of my clinic, but the local Rexall pharmacy. Once, I called the phone number on the fax and it just rang and rang.
I am convinced that his is just an illicit way to collect physician signatures, so the scammers won’t even have to get my signature on one form at a time. This way it’s like they’ve got their own rubber stamp to use again and again.
I suspect these scams are successful often enough to be quite profitable. I know this because I sometimes sign these forms almost automatically before I catch myself and toss them in the shred box under my desk.
One of the many dirty little secrets in medicine is that doctors get so many papers to sign that there is actually no way we could read them all before scribbling our signature if we still want to see patients, meet clinic revenue projections and match our own productivity quotas.
By HANS DUVEFELT
Every patient is unique, with some common basic and measurable features and parameters. For a couple of decades now, healthcare has professed to be patient centered. But the prevailing culture of “quality” (and the reality of getting paid for what you do) has us spending at least half our time documenting for outsiders, who are non-clinicians, the substance and value of our patient interactions. That means our patients get half of our attention and others get half.
But of course, if you really wanted to be patient centered, you’d have to ask what patients actually care about, like their blood pressure or their cholesterol, their anxiety or their sore knees. Their answers may not align with the payers’ priorities. And then what…
Parents raise their children and never have to file any reports on how they do it. I believe clergy can still counsel their parishioners without filing reports. But doctors, nurses, nurses aides and physical therapists are trapped in the tyrannical dichotomy of “If you didn’t document it, it didn’t happen”, which actually forces us to do less for our patients just so we will have time to document what we did do. We are, to varying degree, robotniks in a big, inhumane corporate and federal healthcare billing machine these days.
Perhaps the most striking example of the micromanaging and patient-uncentered mandates we are subjected to is the Medicare Annual Wellness Visit: Miss one thing, like offering HIV screening to 80 year old devout French speaking, monogamous Catholics in Van Buren, Maine and risk getting your payment retracted. But we are not mandated to ask about personal life goals or how to balance seniors’ independence with reliance on their children.
Which is more real? The work we do, face to face or even screen to screen, behind closed doors with our patients, or the EMR documentation we produce as a result of those encounters? I know many providers generate voluminous notes that don’t reflect in any way what happened in the visit. That is where the money is.
Right now I am reading a Swedish book by philosopher Jonna Bornemark, titled (my translation) RENAISSANCE OF THE UNMEASURABLE – battling the pedants’ world domination. Much of it is about how the professions of caring for others have been reduced to protocols and reporting systems that make it harder to do what we were trained and developed a passion for. It talks about how checklists and workflows devalue and discourage the powerful creativity that arises when professionals interact with their unique clients and with each other. She anchors all this in the writings of philosophers Cusanus, Bruno and Descartes. It talks about the unknowable, which is something pedants usually don’t want to think about.
By HANS DUVEFELT
A “frozen shoulder” can be manipulated to move freely again under general anesthesia. The medications we use to put patients to sleep for such procedures work on the brain and don’t concentrate in the shoulder joints at all.
An ingrown toenail can be removed or an arthritic knee can be replaced by injecting a local anesthetic – at the base of the toe or into the spine – interrupting the connection between the body and the brain.
An arthritic knuckle can stop hurting and move more freely after a steroid injection that dramatically reduces inflammation, giving lasting relief long after any local anesthetic used for the injection has worn off.
The experience of pain involves a stimulus, nerve signaling and conscious interpretation.
Our brains not only register the neurological messages from our sore knees, shoulders, snake bites or whatever ails us. We also interpret the context or significance of these pain signals. Giving birth to a long awaited first baby has a very different emotional significance from passing a kidney stone, for example.
I have written before about how we introduce the topic of pain to our chronic pain patients in Bucksport. Professor Lorimer Moseley speaks entertainingly of he role of interpretation in acute pain and also explains the biochemical mechanisms behind chronic pain.
TREATING PAIN WITH ANALGESICS
Even when we are awake, we can reduce orthopedic pains with medications that work on the brain and not really in our joints. A common type of arthritis, such as that of the knees, is often treated with acetaminophen (paracetamol), nonsteroidal anti-inflammatory drugs (NSAIDS) like ibuprofen or even opioids.
By HANS DUVEFELT
A while back I was able to completely stop my mastocytosis patient’s chronic hives, which the allergist had been unable to control.
I did it with a drug that has been on the market since 1969 and is taken once a day at a cost of 40 cents per capsule at Walmart pharmacies.
Hives are usually treated with antihistamines like diphenhydramine (Benadryl). My super drug has a 24 hour duration of effect and is about 800 times more potent than diphenhydramine, which has to be taken every fours hours around the clock.
Histamine is involved in allergic reactions, but it also plays a role in stomach acid production. The allergic response happens mostly through stimulation of Histamine 1 receptors and the stomach acid output is regulated mostly via Histamine 2 receptors. Typical antihistamines are blockers of the H1 receptor, or binding site; they don’t do anything except sit there and prevent the real histamine from attaching and starting the allergic chain reaction. While diphenhydramine sits there for 4 hours, loratadine and the other modern, nonsedating (and less itch-decreasing) antihistamines work for 24 hours. Because there is some overlap between H1 and H2 blocking effects, H2 blockers like famotidine can boost the antiallergy effect of the typical H1 blockers. My mastocytosis patient still had hives on diphenhydramine, loratadine and famotidine combined.
But, wait, there’s more…