More and more, the desire grows in me simply to walk around, greet people, enter their homes, sit on their doorsteps, play ball, throw water, and be known as someone who wants to live with them.
It is a privilege to have the time to practice this simple ministry of presence. Still, it is not as simple as it seems.
My own desire to be useful, to do something significant, or to be part of some impressive project is so strong that soon my time is taken up by meetings, conferences, study groups, and workshops that prevent me from walking the streets. It is difficult not to have plans, not to organize people around an urgent cause, and not to feel that you are working directly for social progress.
But I wonder more and more if the first thing shouldn’t be to know people by name, to eat and drink with them, to listen to their stories and tell your own, and to let them know with words, handshakes, and hugs that you do not simply like them, but truly love them.
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.
All through August and September thousands, maybe tens of thousands, of feathered creatures pass through this place and I almost never see a single one. The fall wood warbler migration goes by here every year, all of them, myriad species, all looking sort of like each other, yellow, brown, gray, all muted versions of their summer selves, almost indistinguishable from each other, at least to me, although definitely not to each other, all flying by, mostly at night, calling to each other as they go to keep the flock together, saying: chip, zeet, buzz, smack, zip, squeak— those sounds reassuring that we are all here together and heading south, all of us just passing through, just passing through, just passing through, just passing through. ~David Budbill “Invisible Visitors”
Some feathered travelers slip past us unseen and unheard. They may stop for a drink in the pond or a bite to eat in the field and woods, but we never know they are there – simply passing through.
Others are compelled to announce their journey with great fanfare, usually heard before seen. The drama of migration becomes bantering conversation from bird to bird, bird to earth, bird to sun, moon and stars, with unseen magnetic forces pointing the way.
When not using voices, their wings sing the air with rhythmic beat and whoosh.
We’re all together here — altogether — even when our voices are raised sharply, our silences brooding, our hurts magnified, our sorrows deep, so our route of travel becomes a matter of debate.
Our destination is not in dispute however. We’re all heading to the same place no matter how we get there.
We’re all just passing through, just passing through, just passing through.
Gone on the journey we all must go! ~John Greenleaf Whittier from “Telling the Bees”
An old Celtic tradition necessitates sharing any news from the household with the local bee hives, whether cheery like a new birth or a wedding celebration or sad like a family death. This ensures the hives’ well-being and continued connection to home and farm – the bees are kept in the loop, so to speak, so they stay at home, not swarm and move on to a more hospitable place.
Good news seems always easy to share; we tend to keep bad news to ourselves so this tradition helps remind us that what affects one of us, affects us all.
These days, with instant news at our fingertips at any moment, bad news is constantly bombarding us. Like the bees in the hives of the field, we want to flee from it and find a more hospitable home.
I do hope the Beekeeper comes personally to say:
“Here is what has happened. All will be okay. We will navigate this life together.”
O gentle bees, I have come to say That grandfather fell to sleep to-day. And we know by the smile on grandfather’s face. He has found his dear one’s biding place. So, bees, sing soft, and, bees, sing low. As over the honey-fields you sweep,— To the trees a-bloom and the flowers a-blow Sing of grandfather fast asleep; And ever beneath these orchard trees Find cheer and shelter, gentle bees.
~Eugene Field from “Telling the Bees”
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My thoughts went round and round and it occurred to me that if I ever wrote a novel it would be of the ‘stream of consciousness’ type and deal with an hour in the life of a woman at the sink.
….I had to admit that nobody had compelled me to wash these dishes or to tidy this kitchen. It was the fussy spinster in me, the Martha who could not comfortably sit and make conversation when she knew that yesterday’s unwashed dishes were still in the sink. ~Barbara Pym from Excellent Women
I trace the faltering American family to the invention of the automatic dishwasher.
What ever has happened to the human dishwasher with two hands full of wash cloth and scrubber, alongside a dish dryer armed with a towel?
Where is the list on the refrigerator of whose turn is next, and the accountability if a family member somehow shirks their washing/drying responsibility and leaves the dishes to the next day?
No longer do family members have to cooperate to scrub clean glasses, dishes and utensils, put them in the dish rack, dry them one by one and place them in the cupboard where they belong. If the washer isn’t doing a proper job, the dryer immediately takes note and recycles the dirty dish right back to the sink. Instant accountability. I always preferred to be the dryer. If I washed, and my sister dried, we’d never get done. She would keep recycling the dishes back for another going-over. My messy nature exposed.
The family conversations started over a meal often continue over the clean-up process while concentrating on whether a smudge is permanent or not. I learned some important facts of life while washing and drying dishes that I might not have learned otherwise. Sensitive topics tend to be easier to discuss when elbow deep in soap suds. Spelling and vocabulary and math fact drills are more effective when the penalty for a missed word is a snap on the butt with a dish towel.
Modern society is missing the best opportunity for three times a day family-together time. Forget family “game” night, or parental “date” night, or even vacations. Dish washing and drying at the sink takes care of all those times when families need to be communicating and cooperating.
It is time to treat the automatic dishwasher as simply another storage cupboard and instead pull out the brillo pads, the white cotton dishtowels and the plastic dishrack.
Fingers of twilight shadow
begin to reach over the hill
crawling down through the field
up unto the bank of blackberries
covering fences along the alder grove.
The horses chew their last
leaves of clover before
coming to the barn for night, eyelids heavy,
relaxed and full, drowsy with spring evening
peace at hand and hoof.
A sudden change in the air forces
their heads up and ears forward;
they form a line, staring at the hilltop
above them, riveted to the spot, alert
to an coming intruder, unfamiliar and foreign.
The roar is intermittent, like a warm wind
rattling a barn roof, but inconstant;
then peaking over the crest of the hill
a rounded top of technicolor glory:
The hot air balloon rises.
The horses silenced, baffled, fascinated;
no alpine instinct prepares their response
to this wizard’s act from Oz in their own backyard.
The basket riders wave and laugh at the equine audience below
in formation with golden noses in the air and white manes blowing in the breeze.
The balloon summits the hill, dipping low, almost touchable
before moving back up to race the sunset,
and search out other pastures, other valleys and hills.
The horses released from the spell
leap in response, snowy tails high, noses flared-
To race up the hill to catch impending darkness,
night mares cavort, float suspended
until their air is let out, gently, in softening snorts,
to settle down in a shavings bed in the barn
where night, blissful, becomes ordinary again.