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.
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 was gone 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.
Thirty years into my practice of medicine, I now spend a significant part of my patient care time in 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. 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, poor eating 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.
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.” I have never felt more empowered as a healer when I now can share everything I have available, as it becomes available. 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 unrestricted access to the self-knowledge that leads them to a better appreciation for their health and and understanding of their illnesses.
And so I am impacted as well, as it is a privilege to live and work in an age where such a doctor~patient relationship has now become 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 not Gods though they would like to be; they are only human trying to fix up a human. Many humans die. They die like the tender, palpitating berries in November. 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”
Decades ago, essayist, journalist and storyteller E.B. White advised, “Be obscure clearly.”
As a physician, 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. There is much that is still 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, hardly pristine and clear.
Let’s face the lack of facts of the plethora of shifting, changing facts. Our conceit about our clinical work is ready to unseat us and plunk us in the dust even on the best of days when everything goes well. We hope our patients communicate their concerns clearly and comprehensively, 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, advertised by our training as so solid and reliable, is quicksand much of the time even though our patients trust we are giving them advice based on a foundation of truth learned over years of education and experience. 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.
Over thirty years of doctoring in the midst of the mystery of medicine — learning, unlearning, listening, discerning, explaining, guessing, hoping, along with constant 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 will be a thing of the past. The risk and cost of redundant procedures can be avoided. The patient shares responsibility for maintenance of their medical records and assists the diagnostic process by providing online symptom and outcomes 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. Lives depend on it.
And maybe we can stay on the horse and out of the dirt a little while longer.
Doctor, if only you could see
how heaven pulls earth into its arms and how infinitely the heart expands to claim this world, blue vapor without end. ~Lisel Mueller from “Monet Refuses the Operation”
It is all about the light
when it fluxes and flexes around us,
transforming us, making us something more
than how we started.
If I could only see this in each person,
how light and water transfigures the rankest weed
and the deepest shadows,
if only my heart could expand
as does the heart of God
when He claims us as His own…
then I could truly see, how heaven pulls earth into its arms, blue vapor without end.
People are like stained-glass windows. They sparkle and shine when the sun is out, but when the darkness sets in, their true beauty is revealed only if there is a light from within. ~ Elisabeth Kübler-Ross
In my work I tend to meet people in their dark times. It is rare for a patient to come to clinic because all is well. They come because they are struggling to keep going, are running out of fuel, too blown about by the storms of life.
It is my responsibility to search out the light hidden dim within, to assist my patient to fight back the darkness from their inner resources and offer what little I have to stoke and feed the light from the outside.
I offer a sanctuary from the storm; in return I am bathed in their glow.
Even doctors must become patients eventually, and often challenging patients at that. We know enough to be dangerous but not enough to be in charge. We want to question everything but try not to. We can tend to be catastrophic thinkers because that is how we are trained to be, but fear being alarmists. We want our care providers to actually like us, when we know they inwardly cringe knowing they are dealing with another physician. We wouldn’t want to take care of us either.
Due to intermittent changes in vision in one eye, I have recently been getting some practice at trying to be a model patient. Unfortunately, I have become an ‘interesting’ patient, something no patient really wants to be. That means the symptoms are not classic, the diagnostic tests not straight forward, the exam findings not clear cut, the differential diagnosis list very long. It also usually means a visit to a tertiary care center for a visit with a sub-subspecialist to try to pick the brain of one of the handful of living physicians who thoroughly understands one aspect of complex human physiology and anatomy. As a primary care physician who always sees an entire forest when I approach a patient, it is a unique experience to watch a colleague at work who truly concentrates on understanding one leaf on one tree.
A public academic training institution’s subspecialty care outpatient clinic is a fascinating place to spend a few hours. The waiting room was packed to capacity with people from all walks of life sharing our afternoon together because of a shared concern about one small but crucial part of our bodies — our retinas. We were all told the average time spent in clinic could be three hours or more and we all knew it was worth the wait so didn’t mind a bit. Despite the long wait, not one of us would have thought to object when a couple of sheriff deputies accompanying a shackled county jail inmate dressed in his orange jumpsuit were escorted right into an exam room, rather than taking the only empty seats in the waiting room next to several elderly ladies. We figured he was more than welcome to jump to the head of the line.
Finally my turn came to be seen first by a technician, and then a resident physician, then more testing with more technicians, and finally by the subspecialist attending physician himself. I appreciated his gracious greeting acknowledging me as a colleague, but also his unhesitating willingness to be my doctor so I could be his patient. His assessment after his exam and review of everything that had been done: there was no clear cause for my symptoms, so my diagnosis would carry an “undifferentiated” label rather than the currently less preferred “idiopathic” label. In other words, he didn’t know for sure what was up with my retina and as an expert he didn’t like to admit that, but there it was.
He then smiled and said “so for now we’ll treat you with MICCO.”
MICCO? I knew there are many new unique pharmaceutical names that I have not been able to keep up with, but this was a brand new one to me that I figured only a sub-subspecialist would know about and be able to prescribe.
So he explained: Masterful Inactivity Coupled with Cat-like Observation.
In other words, do nothing for the moment but keep a close eye on it and be ready to pounce the minute something changes. Watchful waiting.
I am relieved to only be under watchful surveillance for now even though my diagnosis, its etiology and prognosis is unclear. I realize it is a treatment strategy I need to use more in my own clinical practice. It helps solidify that doctor/patient partnership, especially when the patient is a doctor; I am content to do nothing but watch for now, knowing I’m being watched.
It was an afternoon well spent in the sub-subspecialty world, as I come away with a commonsense piece of advice very appropriate for some patients in my own primary care practice:
Right now it might appear I’m doing nothing, but doing nothing makes the most sense and is the least risky option. I’m keeping my unblinking eye on you, ready to spring into action if warranted.
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 36 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 a person quickly to find the core of truth about who they are and why they’ve come to me.
Sometimes what I’m looking for is right on the surface: in their tears, in their pain, in their fear. Most of the time, it is buried deep and I need to wade through the rashes and sore throats and coughs and headaches to find it.
Once in awhile, I can 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 can be overcome rather than overwhelming.
Always I’m looking for an opening to say something a patient may think about after they leave my clinic — how they can make better choices, how they can be bolder and braver in their self care, how they can intervene in their own lives to prevent illness, how every day is a thread in the larger tapestry of their lifespan.
Each morning I rise early to get work done before I actually arrive at work, trying to avoid feeling unprepared and inadequate to the volume of tasks heaped upon the day. I know I may be stretched beyond my capacity, challenged by the unfamiliar and stressed by obstacles thrown in my way. It is always tempting to go back to bed and hide.
Instead, I go to work as those 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 am learning how to let it be, even if it feels miserable. 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.
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.
….A shepherd on a hilltop who looks at a mess of stars and thinks, ‘There’s a hunter, a plow, a fish,’ is making mental connections that have as much real force in the universe as the very fires in those stars themselves. ~Annie Dillard
I can feel overwhelmed by the amount of “noticing” I need to do in the course of my work every day. Each patient 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. 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 and offering them the gift of being noticed. It is distinctly a form of praise: they are the universe for a few moments and I’m grateful to be part of it.
Being conscious to what and who is around me at all times is simultaneously exhilarating and exhausting. I must reduce the expanse of creation to fit my limited synapses, so I can take it all in without exploding with the overload, to make sense of the “mess” around me and within me.
Noticing is only the beginning. It concludes with praise and gratitude.
If you want to identify me, ask me not where I live, or what I like to eat, or how I comb my hair, but ask me what I am living for, in detail, ask me what I think is keeping me from living fully for the thing I want to live for. ~ Thomas Merton
As a patient waiting to see my health care provider, I would adapt Merton’s template of personal revelation:
If you want to know who I am,
ask me not about my insurance plan,
or what is my current address,
or whether I have a POLST on file,
but ask me what I am most concerned about,
ask me what I think is causing my symptoms
and what I think is keeping me
from eating healthy, exercising regularly, choosing moderation in all things
so that I can live fully
for the thing I want to live for.
As a physician in the midst of a busy clinic day, I struggle to know who my patients are beyond their standard medical history and demographics. One of my goals in our primary care clinic, now almost a decade into electronic medical record keeping, is to create a way for interested patients to provide their personal history online to us via our password secured web portal. These are the questions our clinic staff may not have opportunity to ask or record during clinic visits. Having the patient personally document their social history and background for us to have in the chart –in essence, telling us their story in their own words–can be very helpful diagnostically and for individualizing the best treatment approach for each unique individual.
We are creating an “About Me” folder in the electronic medical record that would contain information the patient would provide online via their secure patient portal. It will be introduced once the patient signs onto their patient portal for the first time and views their online chart:
Tell us about yourself This is your own personal history in your own words to be added to your electronic medical record in the folder “About Me”. You can edit and add information at any time via this secure patient portal to update it.
We want to know your story. Only you can tell us what you think is most important for us as your health care providers to know about you. We may not always have the time to ask and document these detailed questions in a brief clinic visit, so we are asking for your help.
Why do we want to know your non-medical background as well as medical background?
We evaluate a patient’s symptoms of concern but we also are dedicated to helping our patients stay healthy life long. To assist us in this effort, it is very helpful to know as much about you as possible, in addition to your past medical history. It is crucial also to understand your family background and social history. We want to know more about your personal goals, and what you think may be preventing you right now from living fully for the things you consider most important to you.
This is your opportunity to tell us about yourself, with suggested questions below that you can consider answering. This information is treated as a confidential part of your medical record, just like all information contained in your record. You can add more at any time by returning to this site.
1) Tell us about your family—who raised you and grew up with you, and who currently lives with you– including racial/ethnic/cultural heritage. If relevant, tell us whether you have biological beginnings outside of your family (e.g. adopted, egg donation, surrogate pregnancy, artificial insemination, in vitro fertilization) Provide information on any illnesses in your biologic family.
2) List the states or countries you have lived in, and what countries outside the U.S. you have lived in longer than a month. Have you served in the military or another government organization, like the Peace Corps?
3) Tell us about your educational and job background. This could include your schooling or training history, paid or volunteer work you’ve done. What are your hobbies, how do you spend your leisure time, what are your passions and future goals. Where do you see yourself in ten years?
4) Tell us about your sexual orientation and/or gender preference.
5) Tell us about your current emotional support system—who are you most likely to share with when things are going very well for you and especially when things are not going well.
6) Tell us about your spiritual background, whether you are part of a faith or religious community and if so, how it impacts your life.
7) Tell us what worries you most about your health.
8) What would you have done differently if you could change things in your life? What are you most thankful for in your life?
9) What else do you feel it is important for us to know about you?
Thank you for helping us get to know you better so we can provide medical care that best meets your unique needs.
As this effort is a work in progress, I’m interested in hearing feedback from patients and health care providers. What additional questions would you want asked as part of personal history documentation in a medical record?
Electronic medical records allow us, as never before, the ability to share information securely between patients and their health care providers.
Patients want to tell us their story. It is time we asked them.