THE PATIENT SURVEY RACKET: how to use the patient survey

I just read the Christopher Johnson, MD, post on the hidden life of patient surveys.  It was shared by more than a hundred people; I wish I knew if they were doctors or patients.

WEB DOCTOR RATINGS

Recently I filled out a rate-a-doc checklist on the web.  I marked, for instance, that a waiting room was clean and relatively quiet, etc.  Just okay.  A small window popped up showing that "the Wizard" was behind the scenes, translating my Just Okay checkmarks into the text they would publish: "This is the most wonderful waiting room experience I've ever . . ."  I quickly erased my responses. On other sites, do the lavish praises I read come from patients, or from another Wizard truth-bender?  This should scare us.

I confess that I don't really know what to do about online doctor surveys now that I've seen one attempted revision without my permission.  Now I check only the doctor portion.  A doctor can give a perfect diagnosis to a new patient in minutes, but be off the mark too often with another patient.

HOSPITAL SURVEYS

Judging from several posts I've read, the surveys hospitals mail out are put into the wrong hands at the hospital, interpreted  erroneously, and used as a weapon for blame and responsibility shifting.  

What to do?

1. THE WRITE-IN VOTE:  Surveys do not ask the right questions, I use every bit of white space, to tell what I believe really happened to me and how I sometimes hated it.  How the required  wheelchair hours caused me hours of leg pain.  How the pain pill made me vomit.  And I don't mind writing that the survey asked the wrong questions.

2. THE WHO-DONE-IT?  If the good treatment was caused by my primary doctor, I say so.  Which kind patient assistant remembered I needed floss-threaders, found and gave me some. Name the genius PT  who taught me some OT, made me do things I didn't think I could, and even took me outdoors! Specify that the intake doc was incredibly disrespectful and blaming all week. Use names so others can't pass the buck (or grab the credit.)

3. THE PEN IS MIGHTIER.  If the survey is so inadequate that I'm still angry months later, or if one wonderful caregiver made the whole thing bearable, I take some good advice from a doctor:  write a formal letter (not an email) to the appropriate hospital official.  I find out who is the head of the unit I was in, and the correct address for her or him.  (I did write a praise letter for that PT.)

4. THE PHONE WON'T BITE.  If they send you (or your spouse) home without what you need, and without warning, and without help, call them.  If they were tough and distant when you told them you couldn't carry your 200-pound spine-surgery spouse to the bathroom, you have nothing to lose by calling again and insisting on some referrals to sources of help.  You have nothing to lose.  All they can do is hang up.

I wish you health.

Breast Cancer Imaging: tomography pros and cons and . . .

medpage today featured an article on a JAMA article of a retrospective study of mammograms with and without tomography.  

The interesting statistic was for me was the difference in detecting invasive cancers.  I did not have tomography, and don't think I know anyone who has.  I did have a callback years ago supposedly due to "folds in older breast tissue,"  and the article indicated that tomography's 3D capability makes those folds unimportant.  (Mammography and the needle biopsy confirmed my DCIS.)

Harold Burstein, MD, PhD, of Dana-Farber Cancer Institute in Boston and "a spokesperson for ASCO"* was very guarded in his comments, and mentioned costs. One center in Houston mentions tomography on their site, that made me think it must be expensive.

But I was startled by the disclosures from the study authors: "Friedewald and several co-authors disclosed relevant relationships with Hologic, a manufacturer of the 3-D tomosynthesis equipment."  

*American Society of Clinical Oncology

I wish you health.

CAN GRANDMA BEAT YOU UP? Strength is independence.

A recent medpage article (Seniors in Motion Stay in Motion) is still on my mind (which is why it is still in my crammed-full inbox.)  They were talking about a study using moderate exercise (not oiling the lawn mower, not a stroll next door to borrow a cup of something.)

At first, I thought it was a "duh" title for a "duh" study.  If I start the walk, I continue the walk.  (Despite the humidity.)  And I live smack in the middle of the kind of nature views that have proven over and over to be healing, and to get you home from the hospital a day earlier.  But walking is boring.  And starting something "moderate" is murder for us comfort lovers.  It interrupts alphabetizing the Iphone pictures or reading the new Michael Connolly.  

Also, in the article, Bruce A. Leff, MD, of the Johns Hopkins Geriatrics Center in Baltimore, mentioned reasons why some seniors don't move more.  It made me sad. And he's realistic:  he talks about scary and dangerous neighborhoods, about no transportation to the exercise center, and families who don't want seniors to exercise!  I imagine it goes like this:

Doctor: I recommend she do two sessions a week of moderate exercise to start.

Susie:  She'll fall down.  She already fell once.

Doctor:  If Alice doesn't get stronger, she'll fall again.

Susie:  Who's going to take care of her if she hurts herself?

Doctor:  Who's going to take care of her if she gets weaker?

In a way, I'm a lucky one.  My family didn't get upset when I fell.

Luck is not enough: 

A lumbar fusion survivor who's afraid to do yoga, who sits too much despite what the surgeon ordered, I also have arthritis.  

I can't pass the CDC 4-stage balance test.  

Walking is not enough.  I sit too much and my legs suffer from it.

And Tamoxifen makes me really, really tired at times.

Today, I talked to a neighbor who's moving to a new house.  His wife thinks she's a tennis widow--he told me he's 80; he and friends his age don't play singles.  And there's an Iron Man division for men in their 70s-last year they all finished.  A close friend my age did Tae Bo for years, and started walking four miles a day when she retired.  Age shouldn't make me into WeakMom.

So here's my plan:  

I put my laptop on the chest of drawers so I can work standing up at times.
The podiatrist and NP found me a rheumatologist.  I'll ask him what I can do safely and if  stronger muscles will cut down on fatigue. The medical oncologist is really happy about that plan.

I use the stairs at both libraries.

I will continue the search for shoes that will help my arthritic feet, but not look stupid.

I am sneaking the occasional workout from Strong Women Stay Young, which I've used before.  But you have to ask your doctor before you try it. The key here may be:  I write on the calendar that I did it, and I write if I skipped it.

I threw away the Rx for Diazepam and the backache went away anyway.

What about your plan?

If you're the mom (or pop) there is an excellent doctor somewhere who takes Medicare and will tell your family the dangers of falling if you don't exercise.

If there are stairs in your house, a person only needs one of them and a railing for step exercises. Your family can watch, if they're so worried.

Mom, give your heels to a teenager who doesn't take care of her feet anyway.

You can start with two-pound dumbbells from Target - they let me use them in rehab. But don't use them right after a lumpectomy.

Hospital Design: Hello, a real person will be in that bed! (a rant)

I just saw an ad on a design site showing a patient's room.  One look at the bed brought me right back to the horrors of one particular hospital - losing my purse and phone and call button on the floor myriad times because the "cute" bed rails let everything go over the side.  In this ad photo, as in rehab, there is no nightstand-with-drawer for the glasses, the cell phone, the notebook for notes to the doctor.

There is a window, and outside the window is a view.  Unfortunately, the bed is low, and there is furniture in front of the window. The bed would have to be taller than mine have been, or the patient would never see the view.

Hospital rooms are for people.  They are not marketing photo ops.

The very best way for healthcare designers to begin is to take a stranger who has been a disregarded patient in the past.  Put that patient in the driver's seat before you get to the street the hospital is on.  You sit silently in the back with your notebook, writing down what makes the patient grit her teeth to avoid cussing as she learns the building numbers cannot be seen from the car unless she drives with the door open.  Until she learns there is no sign for Main Entrance.

If this "sample" patient is really sick, give her a tape recorder (you may have to tie it to those "cartoon") bed rails,to use at times like when her chocolate bar has vanished from her suitcase into the black hole closet, along with her spare underwear and dental appliances. Like when she is trying to explain to the staff that her hiatal hernia requires 5 small meals, and the promised yogurt has been eaten by the staff.

After all there's a flatscreen featuring health advice plus David and Bathsheba. And a bedraggled copy of A Photo Guide to Your Rectal Surgery.  And wireless access for when someone helps her get her phone back off the floor, again.

So never mind the evidence about views of nature getting patients out of the hospital a day faster. Never mind that the hospital remodel cut the nature view out of the small rooms.  After all, she has a good doctor.


(Yes, I know there are some good rooms (just not enough.)  And I wish you health.)

Apology

We sincerely apologize for the misspelling of Dr. Dhand's name this week,

HOSPITALS: What IS a real healing environment?

I just read some actual common sense from Suneel Dhand, MD, on Kevin,MD: 5 Ways to Improve the Healing Environment of Hospitals.

One statement is so right-on that I wish it would fit on a tee shirt:

"... the whole topic of making hospitals better places to be 

has become a bit of a bumper sticker — 

with lots of convoluted and complex ideas being put forward, 

that often border on being nothing more than expensive gimmicks."

He talks about more doctors and nurses.  And (a note to all who are writing and meeting endlessly about design and marketing) he mentions the hospital reputation for happy patients in the same step as more frontline staff time with patients.

I'm all about happy patients, but not about marketing.  It's really the 5th "way" that I want to dive into, so there will be a post or article about it.

Meanwhile, I hope you'll read his whole article.

I wish  you health.

Three-month visit to medical oncologist . . . any answers?

Tomorrow I will hear the results of my blood work.  I want to know if I've been tested for metabolizing Tamoxifen to endoxifen or if I will be.  Questions like that probably give doctors a headache.  And what about the thyroid test I suggested--was low thyroid responsible for how terribly cold I got last winter?

So many symptoms and so few as to which are old age and arthritis, and which are Tamoxifen.  I've had mysterious pains that went away after a few days. The  most severe felt like being stabbed in my left shoulder, and I regret agreeing to an X-ray for that pain. It never happened again, though my shoulders do ache at times.

Muscle pain or nerve pain:  My right forearm was hurt closing a car door two years ago, and that same sharp pain along the forearm came back for a couple of days recently - then stopped.

A much younger friend of mine who takes Arimidex has a couple of symptoms very similar to mine - the foot pains with arthritis symptoms, and the waves of scary fatigue are so similar to hers - but hers seem to be worse.  In fact her symptoms over the past year make me more scared of Arimidex.

This is all summed up by what I know some other women say:  the worry is not knowing if a problem is Tamoxifen or something else.

He put me on a three-month visit schedule as soon as I mentioned depression, and that's one of the problems that may just be from my situation - the fact that time's passing and I haven't found work in this area?  Or the fact that I have so many doctors and so many health problems unsolved?

Bottom line:  I like this doctor and he's more patient than his schedule probably tells him to be.

A DOCTOR TELLS . . . A tip on getting more out of a medical visit

Back at the podiatrist's for the second appointment, I had unanswered questions that had been piling up for years.  And what definitely looked to me like arthritis, with toes going off in new directions.  And a few other problems.  I reminded him that he'd told me my legs can cause foot discomfort. 

He told the assistant to see if they had any metatarsal pads.  He asked me if I had an arthritis doctor.  I said no (didn't admit that I never heard of such a specialty.)  

 I asked if toe stands would make my metatarsal arch worse - I need an exercise because I can't pass the balance test.  He sent me over to the counter to do a toe stand, and I barely lasted a second.  

After seeing that he sent me back to Carol (the NP, who's been in this area for many years) and told me to ask her for a rheumatologist. Then he very gently said: 

Let them do their whole spiel before you ask all your questions.  Hear what they think.  Don't distract them.  

I laughed at myself, and acknowleged him for being so tactful about that.  I know I spew out questions/problems at doctors sometimes.  Between the spine fusion and the DCIS diagnosis and treatment, other medical problems have been pushed aside, and are really nagging at me.

Got in to see the NP two days later.  She gave me some rheumatologists's cards, but I kept asking if she knew anyone.  She went across the hall to a different computer, and simply looked up some names in our area.  Coming back to me, she exclaimed:  I'm excited!  Two good people she thought had moved away are back in the area.  So I have names to call Monday.  If they take me, I plan to be a good and patient listener.

I wish you great patient/doctor communications.

WAITING ROOMS. . what's the worst about them - a rant

Yesterday I had some blood drawn in the most depressing lab of my life. Because the only chairs (as usual too tall for me) were jammed into the hall, the other patients and I got acquainted quickly. Since one of them is in treatment for cancer right now, it didn't take long for the talk to center on nauseating and debilitating odors and airborne danger in waiting rooms. (Since we were in the hall, there was plenty of ventilation.) Perfume was mentioned, and my new friends felt there was no excuse for wearing perfume to an oncology office.  Especially if there is a large and very readable sign warning against strong odors and what they do to cancer patients.

Then of course we remembered last winter's horror of a waiting room full of tobacco-smoke-saturated wooly winter coats. (Yes, I'm plagiarizing myself.)   And there was the day in another doctor's office recently when two of us waited in the hall because of the tobacco smoke odor emanating from one single woman.

Yesterday was not my first impromptu conversation to end with this decision:  The trouble with many waiting rooms is the patients!

Is it unethical for a doctor to make someone wait in the hall if that patient is endangering the health of others?
The other possibility (maybe) is excellent ventilation in the waiting room - a very expensive remodel.   I still don't know how to ask a  fine and delightful doctor (or those who may not be quite so fine)  if there is something that can be done about ventilation.

Apparently, patients deciding what to do about waiting rooms is like mice deciding "who will bell the cat."

When a loved one is diagnosed with breast cancer:

If someone you love is newly diagnosed, I hope you will read this advice from a retired female oncologist.  If you are newly diagnosed, I hope your friends and family will read this.

Good advice comes in strange packages.  This is from The Crab Diaries.  Her post was titled:   Love and Loyalty From the Souls of Dogs, about a friend's dog getting ready to die, while another dog stands guard over his last hours.  And no, this is not to insult you or yours.  As an oncologist, she says:

"Sometimes friends and families of my patients are uncomfortable 

visiting their loved ones  after a diagnosis of cancer

,or even more so at the end of life. 

 They ask me, “What should I say?” or “What can I do?” 

The answer is revealed in Nan’s picture of Roo and Barkool: 

 without fanfare, without words, without tears, just be there."

WAITING ROOMS - The good, the bad, the ugly

For Doctor Kuraishi, I knew I'd have to wait.  I knew it might be a long wait.  I knew it would be worth it. At times, I called ahead and asked how far behind they were.  (The front desk staff is very small and busy.)

The patients often talked with each other - on one visit, I heard a lot about basketball and got to tell about a book I was trying to write on Indiana, the spiritual home of hoops.  From the nineties until I left CA, I only heard one person complain about this doctor's waiting time. (If you contact me, I'll tell you who.)

Why did we wait?  Because he never walked out on us in the middle.  He listened respectfully and kindly.  If things were tough, we could usually get a hug.  When spine fusion was inevitable, I tried and tried to get him to assist, but it wasn't possible.  On two nights after the surgery, he came to  see me in the hospital at almost midnight.  A nurse asked who he was, then exclaimed: A doctor?!  At the hospital at midnight!?

On the other hand, I've posted before about that dreary patient waiting room in a CA hospital that opened into a five-star luxury waiting room for visitors.  

In Texas, my breast surgeon was late once because of a serious emergency.  I just put my feet up in his exam room and read my book.  He apologized three times.  Again, I knew waiting for him was worth the time.  He is a kind and calming person.  And by the way, his waiting room has a big sofa with pillows that support my back!

In my new state, I also have four more new doctors.  And I've met a couple of others I kinda wish were my doctors.  Oh, and an eye doctor and a dentist.

Without exception, the chairs in their waiting rooms are too big for me, and give me definite leg pains.  The result is a lot of pacing. 

So far, I've had three really unpleasant waiting room experiences in TX that I want to talk about.  When I was new here, some very confusing directions and a lack of street signs made me late for an eye appointment.  The staff punished me (that staff that had given me the directions) by making me wait until the entire waiting room full of people had seen the doctor.

The other two waiting rooms (one of which belongs to a delightful doctor) definitely, absolutely need HEPA air filtration.  Recently two of us waited in the hall because of overwhelming third-hand smoke from one patient.  In the other waiting room, last winter, the third-hand smoke from heavy winter coats was terrible for me, for chemo patients, and for one patient's baby.  How do we talk to a doctor about this?  

* * *

To this day, I literally don't remember any pains from Dr. Kuraishi's waiting room chairs.  If I thought my cough was scaring people, I waited on a backless bench in the hall.  It was always worth it.

Breast Cancer, New diagnosis and WAY too much advice

Starting to write more about "who's the boss" of our treatment, I was looking for Dr. Salwitz's Light in the Darkness post.  Instead, through the magic of capricious search engines, I found his funny  and useful  Back to School Cancer Quiz.  I wish I'd found it on the day I heard the word "cancer" over the phone, and realized it meant my cancer, in my  body.  And she didn't say maybe.

I read thru the quiz, got some smiles (as he clearly intended, along with information.)  And there was my pet gripe in one possible answer to number 4: You know you're a cancer survivor when:

You don’t have the urge to choke the person who says,

 “All you need to beat cancer is the right attitude.”

How do we deal with advice like that, or any advice from someone who hasn't had cancer or shouldn't give advice?  

Random thoughts:

Smile sympathetically and say, Oh, dear!  I didn't know you had cancer, too!  Oh, you poor dear! 
Announce that you have to go to the ladies' room.
Exclaim that you were supposed to call the doctor five minutes ago.
Say Mmmm.  
Drop some stuff out of your purse.  Others will rush to help and perhaps distract the adviser. 
If there are people around, look at someone in the distance, call out I'm sorry! and move in that direction.
Change  your email address.

Remember, these are just random thoughts.

Then, if you need some laughs in the middle of information overload, I suggest you read Sunrise Rounds, Back to School Cancer Quiz.  I'm going back to it right now--he gives good info.  

This one's for Mary

BREAST CANCER - guilty as charged

Most Breast Ca Patients Fall Short on Exercise says medpage today.

And I'm one of them.  I made a copy of Dr. Salwitz's Breast Cancer Patients Rest in Peace.  I hung it up.   I blogged about it.

 I set my phone "stopwatch." I added up my walking minutes.  I started tutoring, I started Tamoxifen.  I walked less. 

My feet started giving me trouble.  I walked less.

I bought a new copy of Strong Women Stay Young.  I bought a new exercise mat that exudes carcinogens. It's in the car so I can return it.  Meanwhile it exudes probably a lot more carcinogens in the hot car in TX.

And one more Tamoxifen pill and one more unexplained but very uncomfortable pain - the arch of one foot, a place on right forearm that was injured in 2012.  And these are excuses.

I have a left arm which can lift a 3-pound barbell easily.  

Yes, I'm repeating my recent posts!  No, I don't have tv here to dilute the boredom.  

A therapist once told me to expect full-on and full-off days.  Too many full-off ones.  Where to start - I'm going online to see what kind of electronics will let me listen to music as I do a few moves with ankle weights, without disturbing family at work in the "office."

Any start is better than no start.

I wish you health.

Breast Cancer - more likely to survive? What's the catch?

"Women diagnosed early are more likely to survive."  Charts and lists often carry those words.  But I've  still been puzzled about what they mean for every woman diagnosed.   

Almost two years ago, in another state, the sweet young man across the courtyard gave me a party favor on the night his sister celebrated five years free of breast cancer.  In other cancers five years means you might have a normal life span.  We celebrate, as we should.  But breast cancer is different. 

Why do I bring this up?  Because I still have 1 3/4 breasts.  And although I'm old, my diagnosis made me aware that I'm just starting to live!  

An older study explained on the California Breast Cancer Research Program site clarified that phrase that always sends up a red flag for me: "no difference in survival rates."  They mean, let's face it, even diagnosed early, we still may not live a normal life span. 

WHY NOT?

CBCRP* cleared up my fuzzy thinking on this (which before Tamoxifen was maybe just plain denial.)

Medical treatments we know about don't always work.  Here's the math:  Jane Doe is diagnosed, gets the best that the best can offer her.  It doesn't work.  She stays alive for six years. She goes into the five-year-survival statistics.  But she's deprived of a normal life span.

Before we invent more medicine, we need to know why the treatments we have can't give women back a whole life.  The new study on women who can't metabolize Tamoxifen completely, and what to do for them--that's a start.  The emphasis by women like  Lisa Carey, MD, on individual women and the possible differences in breast cancer cells - that's another start.

In California, people can route their tax refunds into Breast Cancer research.  What can the rest of us do?  Send money to Mayo Clinic?  Call our state legislators when we can't sleep?

I wish you health

*http://cbcrp.org/publications/papers/BCinCA/page_12.php

BREAST CANCER NEWS: Saving Some Lymph Nodes

Sitting through the talk two weeks ago on physical therapy for lymph edema, I was sharing the sentiments of some patients:  "Why can't they do something else instead of taking out lymph nodes?"  No oncologists were present.  It hadn't been on my mind (since I have enough trouble with my present treatment issues.)  But now I find: 

There are new guidelines on uses of sentinel node biopsy from the American Society of Clinical Oncology.  In some situations, these guidelines sound as if axillary nodes can, and should be saved.  

These are the links I followed:

https://community.breastcancer.org/forum/78/topic/774827?page=2
http://www.medpagetoday.com/upload/2014/4/3/JCO-2014-Lyman-JCO.2013.54.1177.pdf
http://jco.ascopubs.org/content/early/2014/03/18/JCO.2013.54.1177.abstract

You can go as deeply as you like into the specifics and make your own interpretations; these new guidelines may give some of you hope.  May give you a reason to get a second opinion!

I wish you health.

Breast Cancer Treatment: Does It Need a Report Card?

I was in a room recently while some breast cancer patients and "survivors" listened to a Physical Therapist talk for over an hour on dealing with the lymphedema from having lymph nodes removed.  I may have been the only survivor there who still had all her lymph nodes.

When I realized the whole presentation would center on lymph problems, I was tempted to leave.  But I stayed because nobody can predict my future after DCIS and Tamoxifen.

I am not impressed with what medical science has done for these women.  One had surgery years ago for facial cancer and is still disfigured and having trouble with lymph.  

The PT talked at length about the kinds of massage for the swelling of the edema and re-routing the lymph, and the daily outpatient  bandaging.  And the at-home "stocking."  And how some women have a swollen arm until they die many years later!  About how they are at risk for the rest of their lives for edema (in addition to being at risk for recurrence.)

There were mutterings,and exclamations from the other side of the room:  "Why don't they think of some other way than taking out lymph nodes!?"   "Why don't they do something?"

 Two experimental treatments were discussed - neither available since they are experimental, and insurance companies won't touch them. And neither will our bank accounts.

The heartbreaker was a woman dealing with this edema because the diagnostic test with purple dye had not worked, so her nodes were taken out.  They were perfectly normal!   Is there any excuse for that?
Or maybe the heartbreaker was the woman, once pretty, who still has a bandaged eye after facial cancer, and a swollen cheek many years after lymph node removal.

Two women were wearing thick "stockings"  on hand and arm in Texas humidity that hasn't reached its peak yet this year.  Those stockings shout "old woman," and probably dealing with them makes patients feel like "old women."  I have a friend who had breast surgery several years ago, and still has a "stocking" and even one for her hand.  Not the sort of thing one wears to a job interview.

How much should "survivor" women  be required to deal with?   They go on with housework, jobs, and even travel and have families and children with all the pain we face with our loved ones.  Then when the others sleep, these patients are dealing with their lymph.  They finally join their spouses in bed, where they can only sleep on one side, favoring the fat, unattractive, uncomfortable "stocking."   

 Most of the women there were grey-or white-haired.  I'm guessing the younger lymph node removal survivors were at work.  Or were they at home trying to get strained baby food off that thick, ugly arm pressure stocking?  

If this doesn't make you unhappy, maybe this ad I just saw will:

LYMPHEDEMA CERTIFICATION

The Only Five Business Day LANA® Recognized Course. Sign Up Today!

Maybe someday someone I know will trust one of those five-day wonders?

These survivors are valiant. Were all of their doctors equally valiant?  

It's not perfect, but give the patient more? You might want to read the latest

The buzz isn't just buzz now.  If you ever read the science/med sites, you might want to read the MedPage announcement that the American Society of Clinical Oncology (ASCO) says all women with hormone-receptive breast cancer should be offered ten years of Tamoxifen or aromatase inhibitors (AIs).  And don't skip the comments.  

I have some questions about this decision.  Starting with a sentence from a 2009 NCI fact sheet:

 Studies have shown that tamoxifen helps prevent the original cancer from returning and also helps to prevent the development of new cancers in the other breast; however, many women develop resistance to the drug over time (1, 2).  (italics mine) From Adjuvant and Neoadjuvant Therapy Fact Sheet.

And we still don't know how many women cannot metabolize Tamoxifen completely into endoxifen (hence the new Mayo Clinic study into the possibility of administering endoxifen directly.)   Why keep pouring Tamoxifen into those women?

I'm starting to repeat myself and an earlier May post here.   This is on my mind with each little white pill.

I wish you health.