A SLEEPING GIANT OF CARE DELIVERYwakes again after 100 years

Midnight in South Chicago.  1896. A maternity hospital flying squad rolls through the streets to a tenement where a woman screams in a difficult labor.  The team delivers the child on the kitchen table, protected by the germicide in newsprint ink. When all is well, they roll on the next call.

I read this unforgettable story in high school near the greater Chicago area.  The only rolling healthcare delivery anywhere near us was a local undertaker's funeral car.  Babies were delivered in the hospital or by the neighbor. 

I've searched repeatedly since then, including in the  hero's own book, for proof that I didn't dream it.  Nurses I meet have heard of the germicide in newsprint, but none have heard of the Lying-In flying squad

Then last night, I found some proof. 

"In the USA, as far back as the last decade of the 19th century, Joseph de Lee . . . in his Chicago Maternity Centre was taking competent obstetric help,not only to his 'booked' cases, but to anyone who called

for help. His work was carried on by Beatrice Tucker{}  in a foundation whose finances were so slender during the depression years that the most urgent call had to be answered by a team travelling to the patient in a street car."

        

From a paper read at the South African Obstetrical and Gynaecological Congress, Durban, July 1956.

A recent Modern Healthcare headline:

U.S. lags behind in healthcare innovation, Sebelius says

had led me to medpage's Feb. 21 stroke flying squad innovation article by Todd Neale: 

 Taking Stroke TX On The Road, referring to Memorial Hermann's new mobile stroke unit soon to roll in Houston, with its founder on board.

Neale wrote:  "The idea of mobile medical imaging isn't new. In fact, Marie Curie equipped ambulances with x-ray equipment and drove them to the front lines during World War I."  

(So that was about a hundred years ago this year!  Since a woman did it, it couldn't be worth emulating? Or maybe nobody in the US heard about this?)  
   

"But the concept of a mobile stroke unit was introduced more recently in Germany -- about a decade ago by Klaus Fassbender, MD. . . caught the eye of stroke neurologists like Grotta." wrote Neale.  Okay, a decade ago.   And in another country. 

That's still a long time since Madame Curie's rolling imaging center and longer since deLee's flying squad.  

I salute Dr. Grotta's triumph in getting everyone on board, so to speak, for this breakthrough in care delivery. In fact, he was so committed he quit his job to be able to roll with the new center.  

Why did it take a hundred more years for the US to produce such an innovator, such a leader?  In a country so automobile mad, so technology mad, and with so many under-served, Dr. deLee's and Madame Curie's innovations should have inspired many more...
while we were thinking about what?


Apologies for the formatting - this program is uncontrollable today.

AND THE WINNER IS . . . CA individuals fight breast cancer on tax form

UC president: Donate to cancer research at tax time

By Public Affairs, UC Berkeley | February 7, 2014

University of California President Janet Napolitano sent the following message to faculty, staff and students today:

Dear colleagues:

As you prepare to file your State taxes this year, I wanted to let you know about an important opportunity to help UC researchers and others around California in the fight against cancer.

Toward the end of California Tax form 540, there is a section in which you can donate to two very highly regarded cancer programs that are administered by the University of California.

(I had a terrible time finding the rest of this material yesterday, and I can't find it again today to give you a source. I learned of the program thru an ad.  My apologies if this is too much copied for educational purposes.)

In 2013, the California Breast Cancer Research Program granted over $5 million in research awards that will advance our knowledge about the prevention, detection, treatment and community impact of breast cancer. These awards included grants supported entirely or in part by Californians who contributed to the California Breast Cancer Research Fund on their income tax form. The projects they supported include:

• Intranasal Drug Delivery for Brain Metastatic Breast Cancer
  Axel Schonthal, University of Southern California
• Meeting the Self-Care Needs of Latinas after Breast Cancer
  Anna Napoles, University of California, San Francisco and Carmen Ortiz, Circulo de Vida Cancer Support and Resource Center
• Vitamin D Signals Via a Novel Pathway to Inhibit Metastasis
  Brian Feldman, Stanford University

Learn more about these awards and all of the CBCRP funding this year in our 2013 Compendium of Awards

California Breast Cancer Research Program is Highlighted on Science Today

Listen to CBCRP Director Mhel Kavanaugh-Lynch describe the community organizations across California who are investigating critical breast cancer questions through our training program. CBCRP highlighted on Science Today

DON'T YOU HAVE A MOM? A dad? Are you sure you'll never be old?

Until a nurse I met demanded to know why I was going to a nursing home instead of rehab, I was scheduled to be sent to a nursing home or skilled  nursing home facility (place intended for short term stay) after spine surgery.

Then at the end of rehab, because of insurance technicalities, I was again told I would have to go to a nursing home until my daughter could pick me up. Luckily, they found a way to avoid that.

Yesterday medpage had a notice of a government report on serious, ongoing dangers, including medical error and death, to skilled nursing facility patients.  Apparently the medical care world has been wrapped up in hospital problems, ignoring other patient care facilities with the same dangers that are not adequately policed.  They are getting paid, just the same. 

What's in this report could have happened to me.  Let's not pretend it can't happen to you.  

Go to medpage March 4, scroll down to "medical treatment harmed." Click on "third of nursing home residents'' to see exec summary of the DHHS report.  Or perhaps better yet, click on the link to ProPublica article. 

How can we get existing standards enforced? Will you call or write your state about this? Before you need it?

Medical treatments harmed nearly a third of nursing home residents, to a government watchdog report. ProPublica has the story.

from medpage March 4)

PATIENT SAFETY

One Third of Skilled Nursing Patients Harmed in Treatment

by Marshall Allen
ProPublica, Yesterday, 9:47 a.m.

A study by Medicare’s inspector general of skilled nursing facilities says nearly 22,000 patients were injured and more than 1,500 died in a single month — a higher rate of medical errors than hospitals.

TAMOXIFEN: LIFE WITHOUT SOY . . Part 2

After menopause, my doctor suggested phytoestrogens (plant estrogen) for hot flashes and various other problems.  I put flax seed on my cereal, I bought soy milk by half gallons. At work (no lunch break) I had a soy bar for lunch and one later.  When my employer went out of business, when I moved in with a friend, even when I came to another state to stay with my family - year after year soy and flax were my staff of life during changing cuisine.  

And let's admit this: the phytoestrogens may help us look like we're taking an elixir of youth.

Then, that call back for more mammograms.  DCIS.  I was overwhelmed, but not so overwhelmed that I couldn't read my pathology report:  the abnormal cells were nourished by estrogen.   

The famous hospital literature seemed in conflict on the phytoestrogens - pro or con.  I started tapering off. Stopped flax, cut down on soy.  Got constipated, had more trouble with my sinuses, gained weight.  Finally, as I feared, the medical oncologist said "If it says soy, run."

When diagnosed, women already had a medical situation even if we were eating healthy food every day.  A doctor in spine rehab said I was probably the healthiest one there because most of my meds were not prescriptions.  So what!  I needed my OTC stuff including allergy meds, generic Benadryl for sleep with nerves damaged by the spine injury.  And there's the GERD list that forbids everything one would want to eat, even most fruit. 

That part of life goes on. But now it goes on without the forbidden soy, and without diphenhydramine (Benadryl), which interferes with Tamoxifen.  And in a new place, with new doctors, how in the world do you know which problems are due to no soy and new medicine and which aren't?

My 11th day on Tamoxifen pauses for an hour so I can shop for something, anything without soy. There is only so much celery and chicken one woman can eat.

And I'm afraid I'll start looking 92 instead of never mind how old I already am.  Afraid of marching into a job interview alive, but looking like I won't be for long.

Yes, I am incredibly grateful for my cure and the fabulous medical people involved.  No, tamoxifen did not cause my problems. Yes, I'm grateful for these preventive pills.

And now I'm a split personality (insert smileface) living with my usual health picture while happily Cured! of DCIS and almost able to forget about possible Tamoxifen side effects.  

DON'T READ THIS - Dangerous phrases in cancer articles and . . .

When I went away to a Big Ten University, I was lost, under-supervised, and frequently bewildered.  Nothing leading to my major subject was noticeable in the curriculum.

Not even close.  For instance, before my first psychology class, somebody announced, This is a research psychology school, not a clinical psychology school. Oh-oh. Well, damn; I'm stuck here.  

But when I research my DCIS, cancer, hospitals, or whatever, two rules of that college still help me stay out of trouble: 

1.  Papers with unsupported generalities will receive an F.  The instructors would bemoan "glittering generalities" in class, and mark that label on guilty papers.  

In one class, maybe sociology, the instructor asked what makes a person Jewish.  (that was before the age of PC.)  I answered, and he replied, "I think we can categorically reject that."  I had a rare attack of bravery, and brought him printed support for my answer.  Instead of flunking me for insubordination, he praised me. 

Years later, a screenwriter I knew from the neighborhood coffee shop insisted I omit references without a specific source. (Oops. Yes, it had been a while since college.)

"Studies show" is the new and dangerous buzz phrase for "Here comes the vague part."   (Something unsupported is an opinion. And that goes for "experts" who torture me on the car radio during traffic jams.)

That phrase is so dangerous because if the article topic is exciting, like mammograms-in-doubt, we may scan it even if we've never heard of the study or the writer.  Sentences may stick with us, mixed in with reliable material, when we're researching our own diagnoses.   

2.  Question every experiment, every "study" for careful controls; and question whether they've ruled out enough variables to prove they're measuring only what they say they're measuring.  This is where the university's experimental mindset became a blessing for me.

I couldn't do a T test or phi test if you paid me. Yet I still ask myself what variables were considered in a certain experiment, and which were ruled out.  But sometimes, the reporting member of a study team simply does not write clearly. What "years" is he referring to? Does he mean time before recurrence?  Or does he mean life span? 

Of course, there is plenty of material on studies that seem very well designed, and reported  clearly.  When a nationally respected doctor I trust says there have been "some studies" I trust him.   

In short, "studies show" and unclear conclusions are not always red lights for me, but at least yellow lights warning:  
Get a second opinion!

A FLOCK OF CANCER MIRACLES? Or, an oncologist and his patients must be doing something right.

Yesterday, I got more bills from my lumpectomy. Some were from people I didn't even know were involved, and some using terms like partial breast removal that sound a lot more grim than lumpectomy.

But also yesterday, I read many amazing stories of long-term recovery and delightful lives in Sunrise Rounds - a whole day of happy people coming in and telling the doctor about their progress and adventures. 

Seeing so many glimpses into these recoveries and survivals, some many years after their scary diagnoses and major treatment, just gave me such a shot of optimism!  

In short, if you're tired of too many negative forecasts and too many dubious study results in researching your cancer, or the cancer of someone you love, please take time to read yesterday's Sunrise Rounds, about a "dull day."

He sounds like the doctor we all want.

TONGUE - TIED IN THE HOSPITAL

When a doctor writes about an experience in the hospital as a patient, I love it. Somebody understands how the patient feels!  And yet my heart may go out to him, especially because his illness and treatment may be a lot worse than my experience.

But when he writes that he let the hospital go ahead without questioning a test he thought was wrong, premature, or dangerous for himself ( or for a relative he was taking care of) that really scares me.   

When a doctor does speak up, does refuse a test, does ask why or why now he or she sets an example for the rest of us.  An example we  may need when we're hesitant or afraid or too sick and tired to say No.

But when it's my experience, wouldn't it be fun to imagine a certain unpleasant doctor in the hospital as a patient?  My inner three-year-old would say, "See!  It's not so funny, is it?  How do you like it!"  Instead I imagine myself reading the riot act to that doctor or unseen administrator.  

I'm not a doctor, my professional relationships aren't damaged if I speak up, ask questions, insist on an explanation, or just plain refuse.  In fact, in the first spine hospital, I flatly refused an MRI until my own doctor okayed it.  But in the next hospital, I didn't refuse the pain pill the physical therapist insisted on, even though I knew it would make me nauseous.

Why am I telling this now?  Because maybe you, too, ignored one of those patient feedback questionnaires like the one teetering on top of my files, postponed, but not quite forgotten.

Some of the questions on this one are tough. I've read that some feedback can result in the wrong person being punished, and I don't want the responsibility. I could suggest instead of shooting from the hip. But I need to speak. A doctor may be an expert but still leave me feeling alone--that nobody has my back. A doctor may be revered by his colleagues but never warn me of what's coming, may not have the experience to prepare a patient for what seems a small thing, and might be a small thing to a different patient. 

I don't have to fill out the little circles, I can write down what I think (in block letters like a criminal)  Remember, the doctor won't see it. 

I will do it today.  And try to leave my unpleasant memories in the mailbox with it.



















See the file Ask a patient, which has a sample bill