Uncertainty is a common experience in health care. For an upcoming book and ongoing research project, I want to be in contact with patients, families, and caregivers to learn their strategies for approaching, dealing with, and understanding such uncertainty.
For example, Ms. A. has back pain unaccompanied by underlying serious disease. She has no way of knowing whether it will go away in weeks, months, or not at all. She wants an MRI, which accepted evidence indicates will neither aid in treating her pain nor reassure her.
On the one hand, both she and the healthcare provider would like to do “something” as a sign of care; on the other hand, we want to harm neither Ms. A (with tests/procedures that won’t work), nor society (afflicted by a health care system which costs too much, delivers poor care in comparison to other systems, and treats people unequally).
There are many scenarios in which treatment is pursued despite evidence showing it does not work more than placebo. For example, hormone treatment in the patient with local (not metastatic) prostate cancer; repeated CT scans for thyroid nodules without symptoms; treatment of ductal carcinoma in situ (DCIS), mammograms in a patient without significant family history more often than every two years.
How do you as a patient, family member, or caregiver seek the best care in such a situation, where things are uncertain and more tests/procedures might not work? What strategies do you use? What should healthcare providers do? Please be in touch with me to help guide this work. zberger1 at jhmi dot edu
See the presentation below for another depiction of the problem.
This week, I covered for one of the chief residents. I was the attending physician for about 25 patients in the hospital during the space of a few days. On one of those days, I still had scheduled my regular outpatient clinic; the entire day became a way to experience the contradictions inherent in the practice of medicine, crossing the street again and again between the hospital and my clinic like a shuttle on a loom.
How many contradictions, or rather, pairings that we see as contradictions, confronted me with each patient I saw, comparing in my mind the medicine I practice every day in clinic with the kind of health care delivered in our hospitals!
How can we treat patients while on the very knife-edge of these contradictions? Treating both inpatients and outpatients makes me more sensitive to the edge, but I’m not sure I can dance any better….yet.
Here’s another poem I am reading this Saturday at Beth Am Synagogue, but this one is a translation from the Yiddish (original here).
by Yermiye Hesheles
You glimpse once
among time’s leaves:
a pressed flower
Its kind long ago
bilions of years distant.
If you sense the flower’s
deeper avatar –
it’s no longer silent.
It’s an avatar
And you call out:
Om mani padme Hum!
Even mistakes do what they can
bringing the most of themselves
to the failure fair.
A sweet grimace of misunderstanding
slips from error to error.
An unexploded sun fumbles at the earth with thick rays.
Under a millstone, a mud-swaddled mushroom
ponders its toxin, deeply felt legacy.
Turning, a moon faces its mother
with the homey side, its poxy jewels.
“The title of the book, One Nation Taken Out of Another, really comes in the form of a question, and this highlights a significant stylistic aspect of Berger’s poems. The question mark gets a heavy workout in these pages. Whether it’s in dialogue (“Vos iz mitn goyish? I say. What’s with the goyish? Speak Yiddish like we do at home.”), the poet speaking to one of his characters (“Nachshon, need a shower?/Nachshon, foxy fish down there, huh?/Nachshon, one small step for man?” – “Hagode shel Peysekh”), a riddle asked of himself or the reader (“How do you English a Yiddish nation?”), the effect is to put the reader on the spot, get him/her involved.”
A nice review, by Charles Rammelkamp, here.
Post-call on the pediatrics ward, Hillel Yaffe Medical Center. The team for most of call was two doctors and a nurse, all Muslim Arabs, and a Jewish nurse and intern. The atmosphere was warm and good, despite the general despair evident on everyone’s face, even though the news was open on one of the computers in the background, despite Code Red warnings heard occasionally from the app that a Jewish nurse and an Arab doctor had running. We talked freely about baseless hatred toward both sides. Freedom of expression. The fucked-up situation.
All the while, the Arab team members treated Jewish infants with dedication and a big smile, as Jewish staff treated Arab babies with the same dedication. In the afternoon, when the Ramadan fast was getting harder for one doctor and he asked to rest an hour or two, the Jewish and Arab staff stayed to cover him. These past few days, when two interns got called up from the reserves, the entire Arab and Jewish staff worked extra to cover them. Then, when the doctor ordered food for breaking the fast, he asked the Jews on the team if he could order them something to eat too. As they broke their fast, the Jewish staff kept working. Through the night, the entire team worked in full cooperation with smiles and laughter and good humor.
I know everyone has resentments, anger, opinions. And a solution, if there is one, isn’t simple and will require concessions from each side.
But – and call me naive – a night like this encouraged me, let me dream that one day what matters will be the fact that we are above all human beings, and somehow, maybe we can even build something beautiful and positive here together.
– Tal Kessler, intern, Hebrew University of Jerusalem (translated from the Hebrew by ZShB)