Sunday morning musings

13th century Song funerary jar, from Indianapolis Museum of Art

I’m guessing I’ve got about fifteen minutes before all hell breaks loose.  There are three little girls sleeping upstairs, but once one of them is up, they’ll all be up.  I’m guessing that’ll be the start of Pancake Time.

I had this dream that I was at a small memorial for a patient of mine who died recently.  As the doctor, I had a special place at the table and was given a box that held part of the preserved remains, to be buried in a special ceremony. Which is, of course, ridiculous.

As physicians we do occupy a unique and strange place in people’s lives. There is a strange intimacy that develops, one that isn’t that of family or friend or spouse. And it is tied to place and time so tightly, most of its secrets passing in a small, generic room filled with symbols of cleanliness and sterility rather than compassion and familiarity.

Both doctors and patients value this relationship, probably for different reasons. In the worst of circumstances, patients will hold to their doctor like a totem clutched in a frightened hand. Some of this is the hope that the doctor will perform some sort of deus ex machina, but some is less based on blind hope. Patients can come to us knowing that we are not intimately tied to their dying in the same way that family and friends are. Speaking frankly to me in my exam room won’t cause me visible pain as it would with a spouse or child.

But it does cause pain, pain that we are used to sublimating. The intimacy of the exam room does affect doctors, and sometimes the loss of a patient finally hits you in a way that you didn’t expect. It’s not a pain you would show your patients for fear that they will try to protect you with silence.

So you go home, pour yourself a glass of Scotch, and when you wake up in the morning, listen to the squeals of little girls as they share their own innocent intimacies and then demand pancakes.

The lot of man

It’s pretty cold out there.  It’s the wind, really; the sun is warm but the wind is brisk out of the north.  I’m wearing shorts and a sweatshirt.  Today is supposed to be a run day, but I’m not up to it, at least not yet.  I’m finding weekends to be more and more about catching up on sleep (at least for me; for my wife, it’s nearly as busy as weekdays).  I’m still not sure how much of yesterday I slept away, but probably quite a bit.

We spent the evening with old friends, my oldest friend, one whom I’ve known since toddlerhood.  An old restaurant we remember from childhood re-opened downtown after many years.  We sat and laughed, glancing at the ballgame on TV, watching the freighters crawl along the river.  The lights of Canada are brighter than I remember them.  It almost looks like a big city, but it’s just a shell of casinos and restaurants enclosing a small city suffering from the same automotive woes as we are on the north side of the river.  Still even our side has its beauty.  The new Riverwalk looks inviting, ready to take on early morning joggers, midnight strollers.  But after our dinner, it stands empty, brightly lit but barren.

*****

This strangely-prolonged spring has brought some surprises.  Flu spiked late this year, sneaking around the vaccine in many cases.  Our magnolia, ready to flower after weeks of warm weather, lost all it’s buds to a sudden freeze.  Some sort of little brown bird is nesting by our front door.  My daughter saw an adult standing by with a dragonfly in its mouth. When I explained what it was for, she gave me a look that said, “I’m a picky eater and I’m very OK with that.”

Last year at this time I was experiencing a particularly intimate view of illness.  My wife lay in a bed, delirious, in pain, cut up.  It’s not a time I look back on fondly; in fact, I don’t look back at all.  People say we can learn from illness, but that’s a lot of perfumed bullshit.  Suffering is suffering. Sure, you may learn some new facts, but I don’t see the dignity.  Crying out in pain, and suffering in silence are morally equivalent.  When someone I love is sick, I don’t care if their stoicism is “inspiring” (luckily, my wife never suffered that vice).  Pain is pain; we don’t choose how to handle it. It handles us, and ungently.

*****

Never give bad news on a Friday. No matter how awful a diagnosis I have to deliver, waiting two days will rarely change the outcome, except by destroying a final, pain-free weekend.  Fridays are full of freedoms.  Aside from avoiding bad news where possible, I’m in no hurry.  I usually spend as much time as I need with patients, but on Friday even more so.  The last patient of the day is a bit of a random pick, but I often spend more time with them than any other patient, whether or not they are suffering a crisis. If they feel OK, I may use the time to get to know them better, let them tell me the things they’ve told no one else.  Patients often preface such confessions with, “I really shouldn’t bother you with this…” but I’m precisely whom they should bother. Your marital crisis affects your health.  Your child’s illness puts your drinking in context.  Your fear of aging is full of truths and half-truths, some of which I cannot sooth, some of which I can.  I like the look of relief on your face when I relieve you of a burden you’ve been carrying unnecessarily.  The spouse who left you in the 1950’s is present to you, so he’s present to me.  Sometimes I walk away deeply sad, but never less wise, and never less humble.  Your worries, your suffering, helps me help you and helps me help others.

There is no dignity to suffering, but know that perhaps, just maybe, if you share your stories, others can benefit, and I suppose for some this brings a bit of relief.

Death smells like vanilla

She lay in bed, her breathing erratic; she would breathe in deep and fast, then exhale slowly, as if she’d just hit her first cigarette of the day.  In place of a cigarette was a tube, about a quarter of an inch wide. It was stained brown, and every few minutes a bucket attached to the wall would make a hissing sound, and brown sludge would course from the tube into the bucket.  Presumably, the tube went down to her stomach.   The brown sludge, being contained in tube and bucket, didn’t convey a smell or any other hints as to what it might be.

Another tube was in her nose, making a faint, continuous hissing noise.  It also had a bit of a brown stain, just on the tips that sat inside her nose.  It ran from her nose to another wall outlet, just next to the sludge bucket.

The third tube ran out from under her blanket, across her exposed thigh, and over the side of the bed.  It ran into a large, thick plastic bag filled with something that looked like urine, but with white flecks forming a cloudy layer at the bottom of the bag.  That tube also had spots of brown sludge, but not exclusively, as the oral tube did.

She seemed to produce a lot of brown sludge.  A bedside commode had a bit in it, and that one did have an odor, a faintly sweet but strongly fecal smell.  More powerful was another bit of sludge on a shelf by the window.  In between flowers in various stages of wilt; between cards, some with the neat hand of an older person, some in the large scrawl of a grandchild; next to pictures of someone who must be her, but without tubes and beautiful; on that shelf was a small styrofoam bowl filled something that looked like cooled beef consomme.  It was brown, of course.

From that small bowl, a powerful scent flowed around the dying flowers, past the cards and toward the dying woman.  The consomme wasn’t beef, but vanilla.

People think of vanilla as subtle; it’s synonymous with “bland”.  But not this vanilla.  The hospital-grade vanilla flows thickly through the room, around the sludge bucket, the commode, the still-living body.  It attaches itself to other smells, sometimes accenting them, hopefully but rarely overwhelming them.  It shares every room filled with brown sludge and grief.

That pleasant scent, the one that defines bland, attaches itself to something else, becoming something else.  It becomes part of the smells of dying, of suffering. It becomes cloying, suffocating,  insufferable.  Outside the woman’s room, it may be subtle, but it hints of what is behind the door—tubes, brown sludge, sunken cheeks, uneven breaths.

 

Blind

I have the room to myself. I really like the breakfast bar and the high-backed leather benches my wife found at Value City. We set up the Mac down here where we can see kiddo using it and where I can easily fill a glass of water or get some pretzels.

I wrote a post yesterday that took something out of me, like removing a splinter. I can’t write directly about my patients so I put together scenes, impressions, words collected over the years into sketches that help me make sense of what I see every day.

The hard work, the work I’m always learning is the quotidian, the tedious. Following paper from one place to the next, learning the technocratic side of medicine has been hard, but my teachers excellent. As good as my pathology professor was, my partners are month by month helping me learn the minutiae and the big picture of the behind-the-scenes work.

But it’s still the exam room that I love, that I find easy, natural. I don’t know what the hell a doctor is. Am I a scientist? A shaman? I know that life is terribly contingent. These contingencies are the gaps in the blinds, letting in a cloying darkness.

My wife asked my why cancer patients look like cancer patients. I gave some sort of lame answer about cancer cachexia, temporal wasting, but it’s really the gaps in the blinds. A young person you recognized in decades of photos suddenly looks very different, and that difference says “sick”. The patient may not see it, the family may not see it as they take pictures they hope show hope and happiness, but I can see it. It’s a glimpse of what is to be (or not to be, right?)

I refuse to believe it’s all narcissism, that we see only ourselves in our sick friends, or that we see our opposite. We may identify, and we also know that it cannot be us–ever. We’re protected from these contingencies. But there is something more empathic, a more real connection. In the exam room the Kleenex box isn’t just for the patients. We try to build a Chinese wall, but when you tell someone you’ve known for ten years that you’re unlikely to share an eleventh, you can see the wall for what it really is—old, crumbling, fallen in places. The feelings seep through, and so does the sense of your own precariousness.

Whether the metaphor is a blind or a wall, it’s imperfect and porous. Clinical terms can lend a distance, a sharpness. The sharpness can cause us to pull back suddenly as the pain of the wound reaches the brain. But it can draw us into the story, sometimes deeply. You may start to fantasize about making a house call or insinuating yourself even more into the bruising scrum.

There are no really good comparisons to be made. No metaphor captures the conflict, the emotions that are real, and distant, and intrusive.

I’m not a shaman. I’m not a scientist. I’m a human being immersed in the life of other human beings, bringing knowledge to their sometimes-disrupted lives, sometimes phoning it in, sometimes delivering a eulogy for the living.

Postscript

“I’m so sorry to hear about your father.”

“Thank you doctor.  He really liked you,” she said, smoothing her skirt.  She always sat like a coiled spring.

In a small exam room it’s hard not to share temperaments, passing them like a bottle in a brown paper bag.  Being near her made me guard my gestures and language as closely as she seemed to guard hers.

I don’t mean to say she didn’t have an easy smile.  She was pixie-like, despite her age, but not juvenile.  But there was a seriousness beneath, and maybe something more. She had been caring for her father for a long time.  He had a certain kind of quiet charm still evident in his daughter’s smile, but somehow more genuine in spite of, or maybe because of his failing memory.

He always had her stop and pick up two boxes of cookies on the way to the office, one for the staff, and one just for me.  He would hold them on his lap as she pushed him in a wheelchair from  the lobby.  At home he rarely used even a cane, but in an office building, a chair seemed easier, safer.  He wasn’t so steady on his feet.

I think he liked the smile of the girl at the front desk.  When he would hand her up a white box tied with a cotton string, she would bend over the front desk, his rheumy eyes  innocently gazing past the top of her blouse. The box was closed and tied perfectly, with just a bit of grease on the edge where the baker’s hand had held it.  No one closes a box like that anymore.  When I see a box like that, I think of the little bakery where my mom bought challah, and the curt old ladies would hand me a dry, crumbly cookie just for being a kid.

He was always in a good mood when I saw him, but his daughter would sometimes hint of troubles at home.  He was moody.  He was a bit difficult.  Nothing specific, but the smile lines around her eyes would seem less genuine when she spoke of home.

They were both frail, really, small-boned, with parchment paper skin.  He was slow and quite stooped. When she was still, she was quite still; when she moved she was jerky and quick, like a sparrow but without the grace and humor.

At his age, I didn’t really do much except put a stethoscope to his chest and a hand on his shoulder.  Sometimes I would bandage another wound on a shin or elbow, or reassure him about the bruises that occasionally bloomed under his translucent skin.  We both enjoyed the visits, I think.

As these things go,  the visits finally stopped.  We didn’t get any more cookies, but they weren’t that good anyway.  But I still got regular visits from his daughter, also my patient.

As she sat on the stool, her aging blouse pressed perfectly, she smiled as we reminisced about her father’s visits, his repeated stories, his flirtations.  Soon, though, her face transformed into an expression that better matched her posture: taught, nervous, potential energy barely contained.

“He fell a lot, you know.”

“Yes, I remember.  I was amazed how he could laugh about it.”

“You don’t think it’s the falling that killed him, do you?”

“Of course not.  He was very, very old.  When you get to be a certain age, things just happen.”

She leaned in, her voice dropping, causing me to lean in to hear her.

“If he fell, and maybe someone didn’t pick him up right away, that wouldn’t have killed him, would it, doctor?”

 

 

Confidentiality is more important than any other principle in medical writing.  I always change significant data about clinical cases, which can include gender, place, temporal relationships, and other potentially identifying data. Cases are often amalgams of different patients’ stories. In some cases, they are so far from the original as to constitute fiction.

Painfully aware

She didn’t look well.  No one “looks well” sitting in an crowded ER, but she really didn’t look good.  At first glance from across the room I assumed her to be fairly old, how old I wasn’t sure.  Scrawled atop her clipboard in red Sharpie was ADMIT TO MEDICINE. I pulled the board and walked over to her.  She was sitting up on the gurney, rocking and moaning.  Many others were doing the same, a keening ritual in a bloody church.   But she was my only parishioner for the moment.

The clipboard reported her vitals, an age of eighty, a few scrawls from various medical professionals and her previously stated disposition.  The rest was mine to learn.

“I got cancer,” she said between moans.

“Do you know what kind?”

“In my pancreas they said.”

As I observed her, I saw the truth of it.  Her skin was a papery grey-yellow, her belly looked absurdly pregnant given her age, and her eyes gave off an unhealthy fluorescent glow.  And she didn’t smell right.

“When did they tell you about this,” I asked. “Do you have a doctor who’s taking care of you?”

“Well, musta been about a year ago.  I never been much for doctors, but the pain is so bad,” a sudden sob accentuating the obvious.

“Where is the pain?  What does it feel like?”

“Doctor, it’s in my belly, and it feels like someone is pushing in with their fist and never stopping. Like I just want to die to stop it.  I can’t eat, I can’t drink, I can’t sleep cuz of the pain.”

Following the usual line of questioning I asked, “Have you tried anything to help with the pain?”

“Heroin.”

She said it the same way I might say “Motrin.”

“Uh, OK, uh, how did that happen?”

“Well, I tried it once back in the day and I never took to it, but I figured maybe it would  help.  One of my nephews got me some.”

“OK, well, did it help?”

She looked at me for a second, stopped her rocking, and using the voice I’d imagine she would use on a simple grandchild, said, “Doctor, if it’d worked, I wouldn’t have come here. I told you I don’t care much for doctors and such.”

Journeys

I met this beautiful woman the other day. She had a sad, glowing smile, was dressed impeccably, and had this wonderful accent. I imagined her voice would be at home in some small corner of Europe where the pastries are always fresh, the coffee fragrant. She was sitting in a chair next to man, or what used to be a man. He lay stiffly in a bed like a bundle of fallen sticks—one of the sticks was being held gently by the beautiful woman, his wife. The room was too big for them, the high ceiling and white walls almost deafeningly empty.

They belonged to another time, this couple. The light poured through the window, stopped by a single IV pole which left a long, thin shadow on the wall, like a tree in winter. I pictured them in a different light, one a little richer, maybe browner, the colors subdued but present, not washed out like this day. They must have held hands then, too, but less delicately, with less fear. The young doctors stood by, also dwarfed by the room, but somehow less out of place. It’s not just that they were doctors, and this a hospital—they were more a part of this life, this place, this time. They were near the beginning and middle of their journeys, not the end. It was palpable. They thought, “where might I be tomorrow? In bed yet? Answering a call? Drinking?” The questions hanging over the couple in the room were, “Will I be tomorrow? Are there any left? Why?”

It’s strange—to be in the middle point of my own journey, surrounded by people nearly at the end, or perhaps past the end. Some live for the moment, never thinking it will end. Some mourn for the sepia-past that never was. But mostly I think they just cling to each other and to the moments, waiting, unsure, and watching as we middle-folk go about as if there will always be another day, another cup of coffee, another kiss.

When did you really feel like a doctor?

The Doctor, Samuel Luke Fildes (1843-1927)

Yesterday on Twitter, my friend and colleague Dr. Isis noted that she still gets a sense of surprise when she sees “Dr” next to her name in an email.  She, Alex Wild, and I wondered what are the experiences that really make you feel like a doctor (in this case, PhD or medical doctor).  So I started wondering: what are the experiences that made me really feel like a doctor? Was it the white coat ceremony?  Dissecting a cadaver? Wearing scrubs and a stethoscope around my neck?  All of those are important steps, and important memories for me.  But as I thought about it, I was taken back to a particular night in a particular place.

My residency program had a night float rotation.  Three senior residents would be in the hospital from 11pm until 7am (more or less), each covering a different set of patients.  We would run cardiac arrests, admit new patients, and put out various (metaphorical) fires.  And we would pronounce patients dead.  Each of us shared the duty, on a nightly rotation, of covering the inpatient hospice service.  On one of my first night float calls, my pager went off, directing me to call the hospice unit.  They asked me to come down and pronounce someone dead.  I walked down the hall (no hurry, right?), got on an elevator, walked down another hall and into the calm, well-appointed unit, with its gentle lighting, living room couches, aquarium (at least, I think there was an aquarium).  The nurses directed me to a corner room.  The lights were low when I walked in, and a man was laying in the bed.   His color was—wrong.  Everything was wrong.  I walked over and tried to wake him up, shaking him and calling his name.  I took out a penlight and lifted open an eyelid, my fingers resting on his cold, sweaty brow.  His pupils didn’t react.  I placed my stethoscope on his chest and watched and listened for a long time.  There were no breath sounds, no heart tones.  He was most certainly dead.  I called the attending physician and the family, waking them both, and sat down to do my part of the “death kit”, which included the death certificate.  After a few jests with the nurses, I walked back out into the harsher light of the living.

I’d never felt more like a doctor than I did that night.

Every patient is an experiment

Mrs. Charbin’s blood pressure just kept going up.  She felt fine—no chest pain, no shortness of breath, no headaches—but the numbers put her at risk.  At 55, her risk of developing heart disease at some point in her life is high, and is made even higher by her hypertension.  For each 20 mm Hg rise in systolic blood pressure (the “top” number), the risk of heart disease doubles.  Her systolic blood pressure has consistently been in the 160’s.  She did a great job cutting down on salt, and she was already exercising as much as her arthritis would allow. It was time to try medication.

The data on the treatment of hypertension is extensive.  We not only have a wide range of medication options, but we know the risks and benefits of treatment. We also know that most people with high blood pressure will need at least two medications to bring their blood pressure to goal, a goal based on decreasing the risk of complications such as heart attack and stroke.

Based on this data, I started Mrs. Charbin on a thiazide-type diuretic.  These are inexpensive, effective, and well-tolerated.  Except in her.  When she came to see me two weeks later, her blood pressure was much better, but she was feeling a bit weak, and a little dizzy.   I drew some blood and found that her sodium level was pretty low.  This is a known complication of thiazide diuretic therapy, so I changed her to a dihydropyridine calcium channel blocker.  Two weeks later her blood pressure was fine, but her legs were uncomfortably swollen—once again, a known complication of the medication.  So I again changed her therapy, this time to an ACE inhibitor.  Any physicians reading will know what happened next—she developed a dry, nagging cough, a side effect requiring cessation of therapy.

Finally, I changed her to an ARB.  This class of drugs is related to ACE-I’s.  I had to call her insurance company and explain why a more expensive drug was required (including the fact that I did not try beta blockers because of a resting low heart rate).  Once it was approved, she did great.  About two months after deciding to start drug therapy for her blood pressure, we’d found a regimen that worked.

Science-based medicine relies on data from large studies, but these data do not create a cookie-cutter approach to medicine.  The data tell me what is likely to happen when I fail to control blood pressure, and guide me toward success at reducing the risks of hypertension.  What the data don’t tell me is how much my patient can afford to spend on medicine, how well they’re able to remember their medicine, whether they will tolerate a particular medicine or not.  Each patient is an experiment, but one based on an extensive and living repository of data.

One of the lessons we’ve learned from science is that it works.  A failure of one particular science-based intervention does not invalidate all of science.  Science embraces failure, explains it in a way that makes sense and helps one improve.  I’m always fascinated by the argument that goes, roughly, “my medicine is different, and not susceptible to your science.”  The argument often goes with a pitch for some alternative medicine technique that hasn’t managed to get itself validated by scientific investigation.

One of these techniques is acupuncture, a technique that in aggregate has not been found to work better than placebo.  But true believers will not be deterred by the absence of supportive data (there are lots of good data, just not supportive data).  At the New York Times Well Blog, Tara Parker-Pope had a piece yesterday that repeats some of the misunderstandings of these true believers.

The most telling quote is the one from Dr. Alex Moroz, a trained acupuncturist:

There is a body of literature that argues that the whole approach to studying acupuncture doesn’t lend itself to the Western reductionist scientific method.

This is a common refuge for those who hold to practices that cannot be scientifically validated.  Rather than admit that acupuncture is no more effective than randomly poking someone with toothpicks, they argue that we Westerners and our fancy science are the real failure.  And it is fundamentally bad thinking.  Science is a technique for investigating and understanding the world, one that works.  One of the basic tenets of the scientific method is that we do not get to change the rules to suit our beliefs.  If engineers design a bridge and testing shows that it will collapse under real-life conditions, they don’t just change the calculations, because physics doesn’t change.

Biology doesn’t either.  There are no “meridians of energy” in the human body.  They don’t exist, and therefore, they cannot be manipulated.  Ignoring this fact does not change it.

Every patient is an experiment, but one that obeys certain basic physical laws, and is informed by data.  But as Parker-Pope reports:

[a]cupuncture believers say it doesn’t really matter whether Western scientific studies find that the treatment has a strong placebo effect. After all, the goal of what they call integrative medicine, which combines conventional and alternative treatments like acupuncture, is to harness the body’s power to heal itself. It doesn’t matter whether that power is stimulated by a placebo effect or by skillful placement of needles.

It actually matters quite a bit.  Knowingly prescribing a treatment that is no better than placebo is not harmless.  Worse, this mindset that allows one to ignore science when it is inconvenient is dangerous.  Mrs. Charbin’s blood pressure didn’t get better through judicious application of placebo.  It got better through an understanding of the pathophysiology and pharmacology of the treatment of high blood pressure.   If I found these facts to be inconvenient, my patient would be the one to suffer for my arrogance.

References

Aram V. Chobanian, MD; George L. Bakris, MD; Henry R. Black, MD; William C. Cushman, MD; Lee A. Green, MD, MPH; Joseph L. Izzo, Jr, MD; Daniel W. Jones, MD; Barry J. Materson, MD, MBA; Suzanne Oparil, MD; Jackson T. Wright, Jr, MD, PhD; Edward J. Roccella (2003). The Seventh Report of the Joint National Committee on Prevention, Detection, Evaluation, and Treatment of High Blood Pressure: the JNC 7 Report–Correction JAMA: The Journal of the American Medical Association, 290 (2), 197-197 DOI: 10.1001/jama.290.2.197

The ALLHAT Officers and Coordinators for the ALLHAT Collaborative Research Group, . (2002). Major Outcomes in High-Risk Hypertensive Patients Randomized to Angiotensin-Converting Enzyme Inhibitor or Calcium Channel Blocker vs Diuretic: The Antihypertensive and Lipid-Lowering Treatment to Prevent Heart Attack Trial (ALLHAT) JAMA: The Journal of the American Medical Association, 288 (23), 2981-2997 DOI: 10.1001/jama.288.23.2981

Making mistakes

Yesterday’s sunrise brought for me a mix of melancholy and ecstasy.  It rose over my favorite setting on the last day of my trip to the Ontario woods.  After finishing up my duties as camp doctor, my daughter, my sister and I hopped in a canoe and paddled out to the islands in the middle of the lake.

Sunrise over Tea Lake

My daughter led us around the islands, blazing trails in an uncharacteristically fearless fashion.  But we had an eight hour car ride ahead of us, and a boat to catch to take us to that car, so we paddled back to camp, caught our boat, and that was that. (more…)

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