We praise thee, O God, for thy glory displayed in all the creatures of the earth, In the snow, in the rain, in the wind, in the storm; in all of thy creatures, both the hunters and the hunted… They affirm thee in living; all things affirm thee in living; the bird in the air, both the hawk and the finch; the beast on the earth, both the wolf and the lamb;… Therefore man, whom thou hast made to be conscious of thee, must consciously praise thee, in thought and in word and in deed. Even with the hand to the broom, the back bent in laying the fire, the knee bent in cleaning the hearth… The back bent under toil, the knee bent under sin, the hands to the face under fear, the head bent under grief, Even in us the voices of the seasons, the snuffle of winter, the song of spring, the drone of summer, the voices of beasts and of birds, praise thee. ~T.S. Eliot fromMurder in the Cathedral
In the midst of all the snuffling viruses of winter, the back breaking daily work and labor:
this amazing glory happens this morning
the sky is afire with Him
I am reminded yet again all things affirm thee in living and so shall I.
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.
(Ten years ago this week, this healthy young college student came to our clinic stricken with seasonal influenza complicated by pneumonia. His family gave permission for his story to be told.)
Nothing was helping. Everything had been tried for a week of the most intensive critical care possible. A twenty year old man, completely healthy only two weeks previously, was dying and nothing could stop it.
The battle against a sudden MRSA pneumonia precipitated by a routine seasonal influenza had been lost. Despite aggressive hemodynamic, antibiotic, antiviral and ventilator management, he was becoming more hypoxic and his renal function was deteriorating. He had been unresponsive for most of the week.
The intensivist looked weary and defeated. The nurses were staring at their laps, unable to look up, their eyes tearing. The hospital chaplain reached out to hold this young man’s mother’s shaking hands.
After a week of heroic effort and treatment, there was now clarity about the next step.
Two hours later, a group gathered in the waiting room outside the ICU doors. The average age was about 21; they assisted each other in tying on the gowns over their clothing, distributed gloves and masks. Together, holding each other up, they waited for the signal to gather in his room after the ventilator had been removed and he was breathing without assistance. They entered and gathered around his bed.
He was ravaged by this sudden illness, his strong body beaten and giving up. His breathing was now ragged and irregular, sedation preventing response but not necessarily preventing awareness. He was surrounded by silence as each individual who had known and loved him struggled with the knowledge that this was the final goodbye.
His father approached the head of the bed and put his hands on his boy’s forehead and cheek. He held this young man’s face tenderly, bowing in silent prayer and then murmuring words of comfort:
It is okay to let go. It is okay to leave us now.
We will see you again. We’ll meet again.
We’ll know where you will be.
His mother stood alongside, rubbing her son’s arms, gazing into his face as he slowly slowly slipped away. His father began humming, indistinguishable notes initially, just low sounds coming from a deep well of anguish and loss.
As the son’s breaths spaced farther apart, his dad’s hummed song became recognizable as the hymn of praise by John Newton, Amazing Grace. The words started to form around the notes. At first his dad was singing alone, giving this gift to his son as he passed, and then his mom joined in as well. His sisters wept. His friends didn’t know all the words but tried to sing through their tears. The chaplain helped when we stumbled, not knowing if we were getting it right, not ever having done anything like this before.
Amazing Grace, how sweet the sound, That saved a wretch like me. I once was lost but now am found, Was blind, but now I see.
Through many dangers, toils and snares I have already come; ‘Tis Grace that brought me safe thus far and Grace will lead me home.
Yea, when this flesh and heart shall fail, And mortal life shall cease, I shall possess within the veil, A life of joy and peace.
When we’ve been here ten thousand years Bright shining as the sun. We’ve no less days to sing God’s praise Than when we’ve first begun.
And he left us.
His mom hugged each sobbing person there–the young friends, the nurses, the doctors humbled by powerful pathogens. She thanked each one for being present for his death, for their vigil kept through the week in the hospital.
This young man, now lost to this life, had profoundly touched people in a way he could not have ever predicted or expected. His parents’ grief, so gracious and giving to the young people who had never confronted death before, remains unforgettable.
This was their sacred gift to their son so Grace will lead us home.
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.