What shall I say, because talk I must? That I have found a cure for the sick? I have found no cure for the sick but this crooked flower which only to look upon all men are cured. This is that flower for which all men sing secretly their hymns of praise! This is that sacred flower! ~William Carlos Williams from “The Yellow Flower”
The nail of each big toe was the horn of a goat. Thick as a thumb and curved, it projected down over the tip of the toe to the underside. With each step, the nail would scrape painfully against the ground and be pressed into his flesh. There was dried blood on each big toe.
It took an hour to do each big toe. The nails were too thick even for my nail cutters. They had to be chewed away little by little, then flattened out with the rasp, washed each toe, dried him off, and put his shoes and socks back on. He stood up and took a few steps, like someone who is testing the fit of a new pair of shoes.
“How is it?” “It don’t hurt,” he said, and gave me a smile that I shall keep in my safety deposit box at the bank until the day I die.
I never go to the library on Wednesday afternoon without my nail clippers in my briefcase. You just never know. ~Richard Selzer from “Toenails” from Letters to a Young Doctor
I know for a while again the health of self-forgetfulness, looking out at the sky through a notch in the valleyside, the black woods wintry on the hills, small clouds at sunset passing across. And I know that this is one of the thresholds between Earth and Heaven, from which even I may step forth and be free. – Wendell Berry from “Sabbath Poems”
Whenever I lose perspective about what I’m trained to do and who I am meant to serve, when I wallow in the mud of self-importance rather than in the health of self-forgetfulness~
I wash out a plug of wax from a deaf ear and restore hearing or remove a painful thorn in a thumb or clip someone’s crippling toenails so they can step forth in freedom or I simply sit still as someone cries out their heart’s pain.
I cling to the crooked flower of healing and forgiveness I was handed over forty years ago in order to share its sacred sweetness.
I’ve been given these tools for a reason so need to continue to use them.
In every encounter we either give life or drain it. There is no neutral exchange. We enhance human dignity or we diminish it. The success or failure of a given day is measured by the quality of our interest and compassion toward those around us. ~Brennan Manningfrom Abba’s Child: The Cry of the Heart for Intimate Belonging
Forty years ago this week I graduated with an M.D. degree from the University of Washington and began a lifetime of trying to be life-giving rather than life-draining to others.
There have been times when I’ve failed miserably, my interest waning and my compassion fatigued.
But like tracing the path of a spiral from inside to outside, I continue to try to reach farther and encompass more with each step I take in the time I have left, remembering the dignity of each person I meet and being worthy of their time and trust.
May this young woman who embarked so enthusiastically on the physician journey so many decades ago never forget, after so much seasoning, what it took to get there and what it means to continue to be worthy.
Will there really be a “Morning”? Is there such a thing as “Day”? Could I see it from the mountains If I were as tall as they?
Has it feet like Water lilies? Has it feathers like a Bird? Is it brought from famous countries Of which I have never heard?
Oh some Scholar! Oh some Sailor! Oh some Wise Man from the skies! Please to tell a little Pilgrim Where the place called “Morning” lies! ~Emily Dickinson
You are the future, the immense morning sky turning red over the prairies of eternity…
You are the meaning deepest inside things that never reveals the secret of its owner. And how you look depends on where we are: from a boat, you are shore, from the shore a boat. ~Rainer Maria Rilke, from Love Poems to God from the Book of Hours
I know now what weariness is when the mind stops and night is a dark blanket of peace and forgetting and the morning breaks to the same ritual and the same demands and the silence. ~Jane Clement from No One Can Stem the Tide
I head to clinic this morning knowing from now on my work will feel different after today, no longer the same ritual, no longer the same demands.
Mornings will be more resonant, depending on where I am: from the boat I no longer must be shore, from the shore I no longer need to row the boat.
I can simply be what the patient needs in the moment and the patient is all I need.
The thing to cling to is the sense of expectation. Who knows what may occur in the next breath? In the pallor of another morning we neither Anticipated nor wanted! … we live in wonder, Blaze in a cycle of passion and apprehension Though once we lay and waited for a death. ~Carolyn Kizer from “Lines to Accompany Flowers For Eve”
Over seventy years ago my maternal grandmother, having experienced months of fatigue, abdominal discomfort and weight loss, underwent exploratory abdominal surgery, the only truly diagnostic tool available at the time. One brief look by the surgeon told him everything he needed to know: her liver and omentum were riddled with tumor, clearly advanced, with the primary source unknown and ultimately unimportant. He quickly closed her up and went to speak with her family – my grandfather, uncle and mother. He told them there was no hope and no treatment, to take her back home to their rural wheat farm in the Palouse country of Eastern Washington and allow her to resume what activities she could with the time she had left. He said she had only a few months to live, and he recommended that they simply tell her that no cause was found for her symptoms.
So that is exactly what they did. It was standard practice at the time that an unfortunate diagnosis be kept secret from terminally ill patients, assuming the patient, if told, would simply despair and lose hope. My grandmother passed away within a few weeks, growing weaker and weaker to the point of needing rehospitalization prior to her death. She never was told what was wrong and, more astonishing, she never asked.
But surely she knew deep in her heart. She must have experienced some overwhelmingly dark moments of pain and anxiety, never hearing the truth so that she could talk about it with her physician and those she loved. But the conceit of the medical profession at the time, and indeed, for the next 20-30 years, was that the patient did not need to know, and indeed could be harmed by information about their illness.
We modern more enlightened health care professionals know better. We know that our physician predecessors were avoiding uncomfortable conversations by exercising the “the patient doesn’t need to know and the doctor knows better” mandate. The physician had complete control of the health care information–the details of the physical exam, the labs, the xray results, the surgical biopsy results–and the patient and family’s duty was to follow the physician’s dictates and instructions, with no questions asked.
Even during my medical training in the seventies, there was still a whiff of conceit about “the patient doesn’t need to know the details.” During rounds, the attending physician would discuss diseases right across the hospital bed over the head of the afflicted patient, who would often worriedly glance back and worth at the impassive faces of the intently listening medical student, intern and resident team. There would be the attending’s brief pat on the patient’s shoulder at the end of the discussion when he would say, “someone will be back to explain all this to you.” But of course, none of us really wanted to and rarely did.
Eventually I did learn how important it was to the patient that we provide that information. I remember one patient who spoke little English, a Chinese mother of three in her thirties, who grabbed my hand as I turned to leave with my team, and looked me in the eye with a desperation I have never forgotten. She knew enough English to understand that what the attending had just said was that there was no treatment to cure her and she only had weeks to live. Her previously undiagnosed pancreatic cancer had caused a painless jaundice resulting in her hospitalization and the surgeon had determined she was not a candidate for a Whipple procedure. When I returned to sit with her and her husband to talk about her prognosis, I laid it all out for them as clearly as I could. She thanked me, gripping my hands with her tear soaked fingers. She was so grateful to know what she was dealing with so she could make her plans, in her own way.
Forty years into my practice of medicine, I now spend a significant part of my patient care time providing information that helps the patient make plans, in their own way. I figure everything I know needs to be shared with the patient, in real time as much as possible, with all the options and possibilities spelled out. That means extra work, to be sure, and I spend extra time on patient care after hours more than ever before in my efforts to communicate with my patients. I’m not alone as a provider who feels called to this sharing of the medical chart – the nationwide effort is referred to as Open Notes.
Every electronic medical record chart note I write is sent online to the patient via a secure password protected web portal, usually from the exam room as I talk with the patient. Patient education materials are attached to the progress note so the patient has very specific descriptions, instructions and further web links to learn more about the diagnosis and my recommended treatment plan. If the diagnosis is uncertain, then the differential is shared with the patient electronically so they know what I am thinking. The patient’s Major Problem List is on every progress note, as are their medications, dosages and allergies, what health maintenance measures are coming due or overdue, in addition to their “risk list” of alcohol overuse, recreational drug use including marijuana, eating and exercise habits and tobacco history. Everything is there, warts and all, and nothing is held back from their scrutiny.
Within a few hours of their clinic visit, they receive their actual lab work and copies of imaging studies electronically, accompanied by an interpretation and my recommendations. No more “you’ll hear from us only if it is abnormal” or “it may be next week until you hear anything”. We all know how quickly most lab and imaging results, as well as pathology results are available to us as providers, and our patients deserve the courtesy of knowing as soon as we do, and now regulations insist that we share the results. Waiting for results is one of the most agonizing times a patient can experience. If it is something serious that necessitates a direct conversation, I call the patient just as I’ve always done. When I send electronic information to my patients, I solicit their questions, worries and concerns by return message. All of this electronic interchange between myself and my patient is recorded directly into the patient chart automatically, without the duplicative effort of having to summarize from phone calls.
Essentially, the patient is now a contributor/participant in writing the “progress” (or lack thereof) note in the electronic medical chart.
In this new kind of health care team, the patient has become a true partner in their illness management and health maintenance because they now have the information to deal with the diagnosis and treatment plan. I don’t ever hear “oh, don’t bother me with the details, just tell me what you’re going to do.”
My patients are empowered in their pursuit of well-being, whether living with chronic illness, or recovering from acute illness. No more secrets. No more power differential. No more “I know best.”
After all, it is my patient’s life I am impacting by providing them open access to the self-knowledge that leads them to a better appreciation for their health and and clearer understanding of their illnesses.
As a physician, I am impacted as well; it is a privilege to live and work in an age where such illumination in a doctor~patient relationship is possible.
They work with herbs and penicillin. They work with gentleness and the scalpel. They dig out the cancer, close an incision and say a prayer to the poverty of the skin.
…they are only human trying to fix up a human. Many humans die.
But all along the doctors remember: First do no harm. They would kiss if it would heal. It would not heal.
If the doctors cure then the sun sees it. If the doctors kill then the earth hides it. The doctors should fear arrogance more than cardiac arrest. If they are too proud, and some are, then they leave home on horseback but God returns them on foot. ~Anne Sexton “Doctors” from The Awful Rowing Toward God.
Let me not forget how humbling it is
to provide care for a hurting person
and not be certain that what I suggest
will actually work,
to be trusted to recommend the best option
including tincture of time,
wait and see,
try this or that.
Like other physicians who tumble off
at a full gallop, having lost balance
between confidence and humility,
I sometimes find myself unseated and unsettled,
returning on foot to try again to make a difference.
It may not be rabbit season or duck season but it definitely seems to be doctor season. Physicians are lined up squarely in the gun sights of the media, government agencies and legislators, our health care industry employers and coworkers, not to mention our own 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 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 overcommitted, uncaring, egotistical, close minded, inflexible, and especially– 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.
I admit I’m one of those late doctors. Perpetually 20-30 minutes behind.
I don’t share the reasons why I’m late with my patients as we sit down together in the exam room but I do apologize for my tardiness. Taking time to explain why takes time away from the task at hand: taking care of the person sitting or lying in front of me. At that moment, that is the most important person in the world to me. More important than the six waiting to see me, more important than the dozens of emails, electronic portal messages 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 of concern from my daughter or the worry I have about a ill relative.
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 three patients before them I saw a woman who 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, but is showing potential 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 suspected 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, 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 is very alone, scrambling to do the very best healing he or she can in the time available.
I’m not yet hanging my stethoscope up though some days I’m so weary by the end, I’m not sure my brain between the ear buds 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 for that moment to the needs of the “most important person in the whole world.”
And that human being deserves every minute I can give them.
Astonishing material and revelation appear in our lives all the time.
Let it be.
Unto us, so much is given.
We just have to be open for business. ~Anne Lamott from Help Thanks Wow: Three Essential Prayers
I have the privilege to work in a profession where astonishment and revelation awaits me behind each exam room door.
In a typical clinic day, I open that door up to thirty plus times, close it behind me and settle in for the ten or fifteen minutes I’m allocated per patient. I need to peel through the layers of each person quickly to find the core of truth about who they are and why they’ve come to clinic that day.
Sometimes what I’m looking for is right on the surface: in their tears, in their pain, in their fears. Most of the time, it is buried deep, often beneath a scar I must search to find. I need to wade through the rashes and sore throats and coughs and headaches and discouragement to find it.
Once in awhile, I actually do something tangible to help right then and there — sew up a cut, lance a boil, splint a fracture, restore hearing by removing a plug of wax from an ear canal.
Often I find myself giving permission to a patient to be sick — to take time to renew, rest and trust their bodies to know what is best for a time.
Sometimes, I am the coach pushing them to stop living sick — to stop hiding from life’s challenges, to stretch even when it hurts, to get out of bed even when not rested, to quit giving in to symptoms that are to be overcome rather than become overwhelming.
Always I’m looking for an opening to say something a patient might think about after they leave my clinic — how they can make different choices, how they can be bolder and braver in their self care, how they can intervene within their own finite timeline to prevent illness, how every day is just one thread in the larger tapestry of their lifespan.
Each morning I rise early to get work done at home before I actually arrive at my desk at work, trying to avoid feeling unprepared and inadequate to the volume of tasks heaped upon each day. I know I will be stretched beyond my capacity, challenged by the unfamiliar, the unexpected and will be stressed by obstacles thrown in my way. I know I will be held responsible for things I have little to do with, simply because I’m the one who often acts as decision-maker.
It is always tempting to go back to bed and hide.
Instead of hiding, I go to work as the exam room doors need to be opened and the layers peeled away. I understand the worry, the fear and the pain because I have lived it too. I know the limitations of a body that wants to consume more than it needs, to sleep rather than go for a walk, to sit rather than stand.
Even now in my seventh decade of life, I am continually learning how to let it be, even if it is scary. It is a gift perhaps I can share.
No matter what waits behind the exam room door, it will be astonishing to me.
I’m grateful to be open for business. The Doctor is In.
Love your neighbor as yourself is part of the great commandment.
The other way to say it is, ‘Love yourself as your neighbor.’ Love yourself not in some egocentric, self-serving sense but love yourself the way you would love your friend in the sense of taking care of yourself, nourishing yourself, trying to understand, comfort, strengthen yourself.
Ministers in particular, people in the caring professions in general, are famous for neglecting their selves with the result that they are apt to become in their own way as helpless and crippled as the people they are trying to care for and thus no longer selves who can be of much use to anybody.
It means pay mind to your own life, your own health and wholeness, both for your own sake and ultimately for the sake of those you love too. Take care of yourself so you can take care of them.
A bleeding heart is of no help to anybody if it bleeds to death. ~Frederick Buechner from Telling Secrets
We are reminded every time we hear safety instructions on an airplane before a flight takes off: “in the event of a sudden pressure change in the cabin, oxygen masks will appear – remember to put your own on before helping others with their masks.”
If we aren’t able to breathe ourselves, we won’t last long enough to be of assistance to anyone around us. Too often, sacrificing self-care threatens others’ well-being.
A headline appeared in my email from the American Psychiatric Association this morning: “Physicians Experience the Highest Suicide Rate of Any Profession” – there is rampant depression and burn-out among those who should know best how to recognize and respond to the danger signs — for women physicians, nearly 1 out of 5 are afflicted. Yet the work load only seems to increase, not diminish, the legal and moral responsibility weighs more heavily, and the hours available for sleep and respite shrink. In forty years of practicing medicine (my father liked to remind me “when are you going to stop ‘practicing’ and actually ‘do’ it?”), the work has never gotten easier, only harder and heavier.
I see suicidal patients all day and am immensely grateful I’ve never been suicidal, thank God, but anxiety is embedded deep in my DNA from my non-physician fretful farmer ancestors. Anxiety becomes the fuel and driver of the relentless physician journey on long lonely roads, spurring us to stay awake too many hours and travel too far when we should be closing our eyes and taking a break to breathe, just breathe.
However, we are trained to respond to anxiety from the first day in anatomy class: “and while you, Miss Polis, are trying to think of the name of that blood vessel, your patient is exsanguinating in front of you– drip, drip, drip….”
Terror-stricken at the thought I was inadequate to the task of saving a life, it took years for me to realize the name of the vessel didn’t bloody matter as long as I knew instinctively to clamp it, compress it, or by the love of the Living God, transfuse my own blood from my bleeding heart into my patient’s.
A wind has blown the rain away and blown the sky away and all the leaves away, and the trees stand. I think, I too, have known autumn too long. ~e.e. cummings
Be obscure clearly. ~E. B. White
As a family doctor in the autumn of a forty year career, I work at clarifying obscurity about the human condition daily, dependent on my patients to communicate the information I need to make a sound diagnosis and treatment recommendation. That is hard work for my patients, especially when they are depressed and anxious on top of whatever they are experiencing physically.
There is still much unknown and difficult to understand about psychology, physiology and anatomy. Then throw in a disease process or two or three to complicate what appears to be “normal”, and further consider the side effects and complications of various treatments — even evidence-based decision making isn’t equipped to reflect perfectly the best and only solution to a problem. Sometimes the solution is very muddy, not pristine and clear.
Let’s face the lack of facts. A physician’s clinical work is obscure even on the best of days when everything goes well. We hope our patients can communicate their concerns as clearly as possible, reflecting accurately what is happening with their health. In a typical clinic day we see things we’ve never seen before, must expect the unexpected, learn things we never thought we’d need to know, attempt to make the better choice between competing treatment alternatives, unlearn things we thought were gospel truth but have just been disproved by the latest double blind controlled study which may later be reversed by a newer study. Our footing is quicksand much of the time even though our patients trust we are giving them rock-solid advice based on a foundation of truth learned over years of education and training. Add in medical decision-making that is driven by cultural, political or financial outcomes rather than what works best for the individual, and our clinical clarity becomes even further obscured.
Forty years of doctoring in the midst of the mystery of medicine: learning, unlearning, listening, discerning, explaining, guessing, hoping, along with a little silent praying — has taught me the humility that any good clinician must have when making decisions with and about patients. What works well for one patient may not be at all appropriate for another despite what the evidence says or what an insurance company or the government is willing to pay for. Each person we work with deserves the clarity of a fresh look and perspective, to be “known” and understood for their unique circumstances rather than treated by cook-book algorithm. The complex reality of health care reform may dictate something quite different.
The future of medicine is dependent on finding clarifying solutions to help unmuddy the health care decisions our patients face. We have entered a time of information technology that is unparalleled in bringing improved communication between clinicians and patients because of more easily shared electronic records. The pitfall of not knowing what work up was previously done can be a thing of the past. The risk and cost of redundant procedures can be avoided. The time has come for the patient to share responsibility for maintenance of their medical records and assist the diagnostic process by providing online symptom and outcomes follow up documentation.
The benefit of this shared record is not that all the muddiness in medicine is eliminated, but that an enhanced transparent partnership between clinician and patient develops, reflecting a relationship able to transcend the unknowns.
So we can be obscure clearly. Our lives depend on it.
It had happened many times before, but it always took me by surprise.
Always in the midst of great stress, wading waist-deep in trouble and sorrow, as doctors do, I would glance out a window, open a door, look into a face, and there it would be, unexpected and unmistakable. A moment of peace.
The light spread from the sky to the ship, and the great horizon was no longer a blank threat of emptiness, but the habitation of joy. For a moment, I lived in the center of the sun, warmed and cleansed, and the smell and sight of sickness fell away; the bitterness lifted from my heart.
I never looked for it, gave it no name; yet I knew it always, when the gift of peace came. I stood quite still for the moment that it lasted, thinking it strange and not strange that grace should find me here, too. Then the light shifted slightly and the moment passed, leaving me as it always did, with the lasting echo of its presence. In a reflex of acknowledgment, I crossed myself and went below, my tarnished armor faintly gleaming. ~Diana Gabaldon – Claire’s observations from Voyager
I’ve known this moment of peace in the midst of my work; it comes unexpectedly after a day of immersion in troubles and anguish. As I leave the clinic and breathe in a sudden rush of fresh air, and as I drive down our country road as the sun is setting, I remember that for all of us, the sick and the not-yet-sick, there still are moments of grace and beauty.
It isn’t all sad, it isn’t all anxious, it isn’t all anguish. The moment may be brief, it may be elusive.
But it is there. And I seek it out every day.
(written with gratitude to author Diana Gabaldon for her insights into the complex workings of an innovative physician’s mind in her Outlander series of novels, for Caitriona Balfe‘s insightful characterization and understanding of Claire and for Sam Heughan‘s sensitive portrayal of the man who loves her beyond the boundary of time in Starz’ Outlander – if you don’t know these stories yet, you should.)