An Audience of Terminal Patients

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Write as if you were dying. At the same time, assume you write for an audience consisting solely of terminal patients. That is, after all, the case.
~Annie Dillard from “Write Till You Drop”

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You’re going to feel like hell if you wake up someday and you never wrote the stuff that is tugging on the sleeves of your heart: your stories, memories, visions, and songs–your truth, your version of things–in your own voice. That’s really all you have to offer us, and that’s also why you were born.

~Anne Lamott in a recent TED Talk

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I began to write after September 11, 2001 because that day it became obvious to me I was dying, albeit more slowly than the thousands who vanished that day in fire and ash, their voices obliterated with their bodies.   So, nearly each day since, while I still have voice and a new dawn to greet, I speak through my fingers and my camera lens to others dying around me.

My good friend, Sara, who I’ve known and loved half my life, is fighting for her life in an all day cancer surgery today, having fought a chronic disease and a totally different cancer once before and won.  She knows well the hard cost of winning even when the odds aren’t good,  yet still has a courage in her to fight once again.

That will to fight is heavy on my mind today.

We are, after all, terminal patients, some more imminent than others, some of us more prepared to move on, as if our readiness had anything to do with the timing.

Each day I too get a little closer, so I write and share photos of my world in order to hang on awhile longer.  Each day I must detach just a little bit, leaving a small trace of my voice and myself behind.  Eventually, through unmerited grace, so much of me will be left on the page there won’t be anything or anyone left to do the typing.

There is no moment or picture or word to waste.

 

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Doc Season

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It may not be rabbit season or duck season but it definitely seems to be doc season, especially as the next version of the American Health Care Act is unveiled today. This (and the Affordable Care Act which preceded it) is not about patients — it is about how to keep doctors and the health care industry under reasonable cost control and maintain some semblance of quality service.

Physicians are lined up squarely in the gun sights of the media, government agencies and legislators, as well as our employers and coworkers, not to mention our own professional organizations, our Board Certifying bodies, and our dissatisfied patients, all happily acquiring hunting licenses in order to trade off taking aim. It’s not enough any more to wear a bullet proof white coat. It’s driving doctors to hang up their stethoscope much earlier than they expected just to get out of the line of fire. Depending on who is expressing an opinion, doctors are seen as overcompensated, demanding, whiny, too uncommitted, too over-committed, uncaring, egotistical, close-minded, inflexible, and especially, and most annoyingly – perpetually late.

One of the most frequent complaints expressed about doctors is their lack of sensitivity to the demands of their patients’ schedule. Doctors do run late and patients wait. And wait. And wait some more. Patients get angry while waiting and this is reflected in patient (dis)satisfaction surveys which are becoming one of the tools the industry uses to judge the quality of a physician’s work and character as well as their salary compensation.  It is considered basic Customer Service 101.

I admit I’m one of those late doctors. I don’t share the reasons why I’m late with my patients as I enter the exam room apologizing for my tardiness. Taking time to explain takes time away from the task at hand: taking care of the person sitting or lying in front of me. At that moment, they are the most important person in the world to me. More important than the six waiting to see me, more important than the several dozen emails and calls waiting to be returned, more important than the fact I missed lunch or need to go to the bathroom, more important even than the text message from my daughter from school or the worry I carry about my dying mother.

I’m a salaried doctor, just like more and more of my primary care colleagues these days, providing more patient care with fewer resources. I don’t earn more by seeing more patients. There is a work load that I’m expected to carry and my day doesn’t end until that work is done. Some days are typically a four patient an hour schedule, but most days my colleagues and I must work in extra patients triaged to us by careful nurse screeners, and there are only so many minutes that can be squeezed out of an hour so patients end up feeling the pinch. I really want to try to go over the list of concerns some patients bring in so they don’t need to return to clinic for another appointment, and I really do try to deal with the inevitable “oh, by the way” question when my hand is on the door knob. Anytime that happens, I run later in my schedule, but I see it as my mission to provide essential caring for the “most important person in the world” at that moment.

The patient who is angry about waiting for me to arrive in the exam room can’t know that I’m late because the previous patient just found out that her upset stomach was caused by an unplanned and unwanted pregnancy. Perhaps they might be more understanding if they knew that an earlier patient came in with severe self injury so deep it required repair. Or the woman with a week of cough and new rib pain with a deep breath that could be a simple viral infection is showing signs of a pulmonary embolism caused by oral contraceptives. Or the man with blood on the toilet paper after a bowel movement finding out he has sexually transmitted anal warts when he’s never disclosed he has sex with other men, or the woman with bloating whose examination reveals an ominous ovarian mass, or finding incidental needle tracks on arms during an evaluation for itchiness, which leads to a suspicion of undiagnosed chronic hepatitis.

Doctors running late are not being inconsiderate, selfish or insensitive to their patients’ needs. Quite the opposite. We strive to make our patients feel respected, listened to and cared for. Most days it is a challenge to do that well and stay on time. For those who say we are being greedy, so we need to see fewer patients, I respond that health care reform and salaried employment demands we see more patients in less time, not fewer patients in more time. The waiting will only get longer as more doctors hang up their stethoscopes rather than become a target of anger and resentment as every day becomes “doctor season.”

Patients need to bring a book or catch up on correspondence,  bring knitting, schedule for the first appointment of the day. They also need to bring along a dose of charitable grace when they see how crowded the waiting room is. It might help to know you are not alone in your worry and misery.

But your doctor and health care team is very alone, scrambling to do the very best healing they can in the time available.

I’m not hanging my stethoscope up anytime soon though some days I’m so weary by the end, I’m not sure my brain between the ear tips is still functioning. I don’t wear a bullet proof white coat since I refuse to be defensive. If it really is doctor season, I’ll just continue on apologizing as I walk into each exam room, my focus directed to the needs of the “most important person in the whole world.”

And that human being deserves every minute I can give them.

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The Mere Exception

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We should always endeavour to wonder at the permanent thing, not at the mere exception. We should be startled by the sun, and not by the eclipse. We should wonder less at the earthquake, and wonder more about the earth.
~ G.K. Chesterton

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As a physician, I’m trained to notice the exceptions – the human body equivalent of
an eclipse or an earthquake,
a wildfire or drought,
a hurricane or flood,
or a simple pothole.

Ordinarily I’m not particularly attentive to everything that is going well with the human body, instead concentrating on what is aberrant, out of control or could be made better.

This is unfortunate; there is much beauty and amazing design to behold in every person I meet, especially those with chronic illness who feel nothing is as it should be and feel despair and frustration at how their mind or body is aging, failing and faltering.

To counter this tendency to just find what’s wrong and needs fixing, I’ve learned over the years to talk out loud as I do physical assessments:
you have no concerning skin lesions,
your eardrums look just as they should,
your eyes react normally,
your tonsils look fine,
your thyroid feels smooth,
your lymph nodes are tiny,
your lungs are clear,
your heart sounds are perfect,
your belly exam is reassuring,
your reflexes are symmetrical,
your emotional response to this stress and your tears are completely understandable.

I also write messages meant to reassure:
your labs are in a typical range
or are getting better
or at least maintaining,
your xray shows no concerns,
or isn’t getting worse,
those medication side effects are to be expected and could go away.

I acknowledge what is working well before attempting to intervene in what is not.

I’m not sure how much difference it makes to my patient.
But it makes a difference to me to wonder first at who this whole patient is before I focus in on what is broken and what is causing such dis-ease.

I just might be astonished.

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A Furry, Finned or Feathered Treatment Plan

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Due to changes in Fair Housing Act laws, clinicians are experiencing a significant increase in requests from patients for medical documentation to keep emotional support animals with them in “no-pets policy” rental housing. On a college campus, this leads to far more than just two-legged mammals inhabiting dorm rooms.  There has been an animal explosion on our University campus with over seventy animals of various types approved as an “ESA” in the residence halls and unknown dozens more who live with their owners off campus yet still frequent campus.  Only a small minority of these animals are actually trained and certified as service animals with the right to accompany their owner on public transportation to any public place, including classrooms and eating establishments.  The rest are approved only for housing purposes, yet they are regularly showing up in airplane cabins and grocery stores, dressed in little jackets that are easily purchased along with “certification letters” for big prices on the internet.  ESAs have become part of the campus and community landscape.

As a relatively outdoorsy, green and tolerant northwest University campus, the presence of animals on our campus has yet to seem like a big deal, but as the animal numbers inevitably increase due to 25% of the college student population nationwide currently eligible for an animal due to a mental health diagnosis, it is becoming a big deal as individuals insist on exercising their civil rights along with their dogs.

And it isn’t always dogs.  There are cats, along with the occasional pocketed rat, hamster, guinea pig, flying squirrel, and ferret not to mention emotional support pot bellied pigs, tarantulas, and various types of birds.  And at least one snake.

Yes, a snake.

As a physician farmer concerned with stewardship of the patients I treat and the land and animals I care for, I’m emotionally caught and ethically bound in this treatment trend.  The law compels clinicians to provide the requested documentation to avoid  potential law suits alleging discrimination, yet I’m also concerned for the rights of the animals themselves.   I’ve loved, owned and cared for animals most of my sixty two years and certainly missed my pets during the thirteen years I was in college, medical school, residency and doing inner city work (my tropical fish and goldfish notwithstanding).  I neither had the time, the money, the space nor the inclination to keep an animal on a schedule and in an environment that I myself could barely tolerate, as stressed as I was.   That is not stopping the distressed college student of today from demanding they be able to keep their animals with them in their stress-mess.

As a clinician, I’d much prefer writing fewer pharmaceutical prescriptions and help individuals find non-medicinal ways to address their distress.   I’d like to see my patients develop coping skills to deal with the trouble that comes their way without falling apart, and the resilience to pick themselves up when they have been knocked down and feel broken.   I’d like to see them develop the inner strength that comes with maturity and experience and knowing that “this too will pass.”  I’d like individuals to see themselves as part of a diverse community and not a lone ranger of one, understanding that their actions have a ripple effect on those living, working, eating, riding and studying around them. Perhaps corporate work places, schools and universities should host a collaborative animal center with rotating dogs and cats from the local animal shelter, so those who wish to may have time with animals on their breaks without impacting others who aren’t animal fans, or with potentially life threatening animal dander allergies.

So I find myself reluctantly writing a prescription for a living breathing creature perceived by the law as a “treatment” rather than a profound responsibility that owners must take on for the lifetime of the animal.   With great gravity, I always let my patients know an animal is not disposable like a bottle of pills (or a human therapist) when no longer needed and must have a lifelong commitment from its owner beyond a particular time of high personal stress.

Pardon me now while I go take care of my dogs, my cats, by birds, and my horses and yes, my goldfish.  They are my joy to support for decades and for as long as they need me.

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A Z-Pack Pas De Deux

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I’ve been really miserable for three days and need that 5 day antibiotic to get better faster.

Ninety eight percent of the time these symptoms are due to a viral infection and will resolve without antibiotics.

But I can’t breathe and I can’t sleep.

You can use salt water rinses and a few days of decongestant nose spray to ease the congestion.

But my face feels like there is a blown up balloon inside.

Try applying a warm towel to your face.

And I’m feverish and having sweats at night.

Your temp is 99.2. You can use ibuprofen or acetominophen to help the feverish feeling.

But my snot is green.

That’s not unusual with viral upper respiratory infections.

And my teeth are starting to hurt and my ears are popping.

Let me know if that is not resolving in a week or so.

But I’m starting to cough.

Your lungs are clear so breathe steam, push fluids and prop up with an extra pillow.

But sometimes I cough to the point of gagging. Isn’t whooping cough going around?

Your illness doesn’t fit the timeline for pertussis.  You can consider using an over the counter cough suppressant.

But I always end up needing antibiotics. This is like my regular sinus infection thing.

There’s plenty of evidence they can do more harm than good.  They really aren’t indicated at this point in your illness and could have nasty side effects.

But I always get better faster with antibiotics. Doctors always give me antibiotics.

Studies show that two weeks later there is no significant difference in symptoms between those treated with antibiotics and those who did self-care without them.

But I have a really hard week coming up and I won’t be able to rest.

This could be your body’s way of saying that you need to evaluate your priorities.

But I just waited an hour to see you.

I really am sorry about the wait; we’re seeing a lot of sick people with this viral thing going around.

But I paid a $20 co-pay today for this visit.

We’re very appreciative of you paying promptly on the day of service.

But I can go down the street to the walk in clinic and for $130 they will write me an antibiotic prescription without making me feel guilty for asking.

I wouldn’t recommend taking unnecessary medication that can lead to bacterial resistance, side effects and allergic reactions. I truly believe you can be spared the expense, inconvenience and potential risk of taking something you don’t really need.

So that’s it?  Salt water rinses and wait it out?  That’s all you can offer?

Let me know if your symptoms are unresolved or worsening in the next week or so.

So you spent all that time in school just to tell people they don’t need medicine?

I believe I help people heal themselves and educate them about when they do need medicine and then facilitate appropriate treatment. 

I’m going to go find a real doctor who will listen to me.

A real doctor vows to first do no harm.  I know you want something different than I’m offering you and I wish you the best as you recover.

Now and Now and Now

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And so you have a life that you are living only now, now and now and now, gone before you can speak of it, and you must be thankful for living day by day, moment by moment … a life in the breath and pulse and living light of the present…
~Wendell Berry from Hannah Coulter

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My clinic days are filled with anxious people, one after another after another.  They sit at the edge of their seat, eyes brimming, voice shaky. fingers gripping the arms of the chair.

Each moment, each breath, each rapid heart beat overwhelmed by fear-filled questions:  will there be another breath?  must there be another breath?   Must this life go on like this in panic of not knowing what the next moment will bring?

The only thing more frightening than the unknown is the known that the next moment will be just like the last.

It seems a serious deficit of acknowledgment of NOW, no recognition of a moment just passed that can never be retrieved and relived.  There is only fear of the next and the next so that the now and the now is lost forever.

Such worry and angst is more contagious than the flu virus rampant in the waiting room.
I mask up and wash my hands of it throughout the day.
I wish a vaccination could protect us all from our unnamed fears.

I want to say to them and myself:
Stop wishing away your life.
Stop wanting this moment, this feeling, to vanish.
Stop expecting some one, some thing or some drug must fix it.
Stop being blind and deaf to the gift of each breath.

Just stop this moment in time
And simply be.

I want to say to them and myself:
this moment is ours,
this moment of weeping and sharing
and breath and pulse and light
and yes, sometimes despair.

Shout for joy in it.
Celebrate it for what it is.
Be thankful for tears that can flow over grateful lips.

Stop me before I write
out of my own anxiety,
yet another prescription
you probably do not need.

Just be–
and be blessed–
in the now and now and now.

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A Calling Out

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A psalm of geese
labours overland

cajoling each other
near half…

The din grew immense.
No need to look up.

All you had to do
was sit in the sound

and put it down
as best you could…

It’s not a lonesome sound
but a panic,

a calling out to the others
to see if they’re there;
~Dermot Healy from A Fool’s Errand

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We are here to witness the creation and abet it. We are here to notice each thing so each thing gets noticed. Together we notice not only each mountain shadow and each stone on the beach but, especially, we notice the beautiful faces and complex natures of each other. We are here to bring to consciousness the beauty and power that are around us and to praise the people who are here with us. We witness our generation and our times. We watch the weather. Otherwise, creation would be playing to an empty house.
~Annie Dillard from The Meaning of Life
edited by David Friend

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By the time Saturday rolls around, I am overwhelmed by the amount of “noticing” I needed to do in the course of my work that week.  Each patient, and there are so many,  deserves my full attention for the few minutes we are together.  I start my clinical evaluation the minute I walk in the exam room and begin taking in all the complex verbal and non-verbal clues sometimes offered by another human being.

How are they calling out to me?

What someone tells me about what they are feeling may not always match what I notice:  the trembling hands, the pale skin color, the deep sigh, the scars of self injury.  I am their audience and a witness to their struggle; even more, I must understand it in order to best assist them.  My brain must rise to the occasion of taking in another person, offering them the gift of being noticed and being there for them, just them.

This work I do is distinctly a form of praise: the patient is the universe for a few moments and I’m grateful to be watching and listening. When my patient calls out to me, may they never feel they are playing to an empty house.

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