HOSPITALS: A patient looks at bathroom design and groans

Seen in Healthcare Design June 25 - An article on improvements in hospital bathroom design.
A photo chosen to go with the article was a great disappointment from a patient's point of view.

Vanity: sharp handles at thigh height
There ARE sharp corners
A slimline basin would allow patient see in the mirror without glasses, for face washing or flossing Mirror should extend down to basin level, so a patient can see her own scar or whatever
No caddy for hair dryer or other items for patient who cannot bend

Needs hand rests or arm rests for patients on toilet or to help stand after toilet
There are grab bars for only one hand
(I made things more useful than this for myself in the rehab unit bathroom  - pulling a "potty chair next to toilet, not only for an arm rest, but because it is healthier to push down on something to help get up than to pull down on something.)

Bathing:
Nothing to hold onto en route to shower
No seat visible in shower within reach of telephone/hand shower
NO place for towels near the shower
No apparent depression to drain water and avoid slipping and soaking slippers
And please don't say the hospital has a portable bath seat for every bathroom - never happens.

Also, I don't see anything here about warm and cool bathroom temperature, and especially fresh air, which was scarily absent in rehab and a couple other hospitals.

It can be better than this.  And it should be better.

BREAST CANCER: When is it okay for a nurse to say this: . . (a rant)

In the medpage article a week ago, on lack of lymphedema awareness, Dorothy Pierce, RN, a radiation oncology nurse and author of a small study, is quoted as saying:

'"Either the surgeons are not [telling them about lymphedema] or the patient is not listening,"'

 I need to say:  any announcement that the patient is not listening is one announcement too many.  I have to wonder respectfully if perhaps Nurse Pierce has ever been diagnosed with breast cancer.

What could make the patient seem not to be listening?  Maybe shock from the news? Maybe too much med-speak? A million statistics?  Maybe information overload? 

With breast cancer, the voices have already started:  "You need to report to the Breast Center for more films; you need to talk with the doctor; you need to come back for a stereotactic needle biopsy."    You need to come back to the hospital and meet a biopsy doctor, (so I did.)  You need to, you need to, you need to. Long before lymph is in the picture, the overload begins.  We learn that the nurses and doctors know a lot of words we don't yet know, and they aren't all expert at explaining.  

After the biopsy, in my sleek flapper-look compression bandage, I went out for coffee.  But reality was closing in.  Then the phone call.  The doctor who had done the biopsy sounded so cheerful when she said "There was cancer."  Three words that can feel like the world changed - and maybe it did.  

And she said:  Call Dr. H., we work with him all the time.  Another doctor. Steriotactic biopsy (which I now know I was lucky to get) was only the first of a landslide of new terms, some  explained well, some not. We get a book, we get on line, we get written and audio overload.  We learn that no two famous cancer hospitals agree on everything.   

Luckily a kind survivor and friend said to me after my DCIS was diagnosed: 

 "Hearing that word cancer is overwhelming."  

As I've repeated here, I was so overwhelmed by the first day at the radiation center that I thought the simulation room was the treatment room.  No one in the crowd around me even looked in my eyes to see if I heard during the quick tour.    

We are paying attention to how to deal with our families, our bank balance, the idea of other new doctors we may have to meet. We are trying not to think "Am I going to die?"  

Only the doctor or other provider who is talking can be sure that a conversation, not a lecture, is taking place.  That is a skill.  Their long speech followed by "Do you understand" often provokes a Yes, as in "Enough!  Let me alone."  We may think we understand, then get home with more questions, too tired to try to get the doctor on the phone, if indeed our doctor talks on the phone.

We can't absorb a quickie medical school in a couple of visits. We listen. We try to pay attention.  

The great doctors and nurses, and people like my two beloved radiation therapists, know how to pay attention to us.  

Tamoxifen at 75

I already felt old some mornings before I filled the Rx, but not like this.  Someone told me Saturday I looked tired, and I wanted to say, Honey, you have no idea.  Instead I bought some suntan-look powder makeup.

The days are full of questions:

Did I throw the scissors away or is this the Tamoxifen?
Am I really this exhausted?  If I take a nap, will I sleep tonight?
Did I forget to return that exercise mat? 
If I hadn't read certain major hospital sites, would I feel this bad?  Or is it the power of suggestion?
Would I feel this way after more months off soy?  Or is it Tamoxifen?
Am I in the ladies room so often because of giving up soy?  Or is it old age?

Worse questions
Is this distractedness Tamoxifen or creeping senility?
If I stay on Tamoxifen, will this kind of thinking get worse?
With the pills and without soy, will I wake up soon looking 95?  
How will I get another job if I look 95?


And the very worst, most scary question:

Will my family think I'm getting senile?


What I Do When It's Bad:

I try to remember symptoms from before Tamoxifen.  For instance:

I was overwhelmed at the start of radiation-- thought the simulation room was the treatment room. I had hot flashes in the 90s, whenever I didn't eat on time.  
I had a few "tired spells" at times (just not so often) when I got here--I would just nap.
There were some aches and pains before I started taking this stuff.
Before and after spine fusion, I was so restricted--maybe my body is finally yelling for exercise.
I have arthritis, and it can hurt. 
I remember that I needed the suntan makeup before I started these pills.

What I Tell Myself:

Is it unbearable?  (Of course not.)  Am I okay enough for today? Yes.

My medical oncologist is the one I would choose out of a crowd; and I'm blessed to be alive.

I wish you health.

BREAST CANCER: Surgical Biopsy, Yes or No? and effect on lymph nodes

A medpage OncoBriefs in mid-June included excess surgical biopsies and what caused women to get them. 

According to the article, a large review of cases showed that various characteristics of doctors, including their age and where they trained, can be predictive; as can some patient group factors such as Medicaid.  (Do Medicaid patients have mostly these pro-surgical-biopsy doctors to choose from?)

I learned that the needle biopsy (after having one, I'm still not resigned to calling it a needle) was pronounced a reasonable standard of care back in the nineties, by such august groups as The American College of Surgeons.

Dr. Smith is quoted as saying:  "Still, too often in my practice, I see patients ... after having an excisional biopsy performed for diagnosis, when they obviously could have had a needle biopsy."

On the effect of those biopsies, later in the article Dr. Smith raised the topic that is everywhere I look lately, lymph nodes: '"An open surgical biopsy actually makes lymph node biopsy less accurate -- and lymph node status is the most important factor when making critical decisions about adjuvant therapy."'

back 

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.