Lies, Damned Lies, and Medical Ethics ~ by Jay

About six months after I finished residency, one of my patients told me she'd had an odd sensation in her arm. Her first child was about six months old; she was tired and overwhelmed, and she had these strange symptoms. I thought "oh, this is stress and fatigue", and then I checked her strength, and that arm was weaker. Hmm. So I sent her for an MRI, which in those days and that system took about three weeks, and the report arrived on my desk - multiple sclerosis. I remember sitting there staring at that piece of paper, crying, wondering how on earth I was going to break this news.  I called my father, who said "Well, do you have to tell her?"

It takes a lot to make me speechless, but that did it. He went on to say that the symptoms would probably resolve and might never recur, and there was nothing to do about it anyway (which in 1989 was unfortunately true) and would it really do her any good to know? I finally said "Dad, I HAVE to tell her. I can't lie". And he said well, do what you think is best, sweetheart.

About a year before Dad died, I asked him about that conversation. He looked at me, horrified. "Did I actually say that?" Yes, Daddy, you did. "Well, I was completely wrong". Yeah, I know that, and I can't figure out what you were thinking. "I don't know for sure, honey, but all I can imagine is that I wanted so badly to spare you the pain of telling her that I said the first thing that came into my mind. You're too good a doctor, though, to have listened to me".

I thought of my father last week when I read this, from Arthur Caplan, commenting on this study in the journal Health Affairs.  The study's authors summarize their findings:

...one-third of physicians did not completely agree with disclosing serious medical errors to patients, almost one-fifth did not completely agree that physicians should never tell a patient something untrue, and nearly two-fifths did not completely agree that they should disclose their financial relationships with drug and device companies to patients. Just over one-tenth said they had told patients something untrue in the previous year.

And Arthur Caplan, one of the leading bioethicists in the country, says "So what"? To be fair, he does not think we should lie about medical errors, but not because it's the right thing to do - because it's the safest thing to do.

It is inexcusable and not advisable to lie about an error. You may dodge a bullet on that one by having the patient not find out, but if it really affects their care, if they wind up harmed, if they wind up having to pay more and it comes out later that you didn't tell the truth or that there was an omission of the fact that an error occurred, you are going to get clobbered. I have seen it again and again in courtrooms. It may seem the easiest way out, to avoid telling the truth when an error takes place, but getting it out there and getting it over with early is the best protection in terms of malpractice associated with error.

Conflicts of interest? Well, you probably shouldn't lie, but patients don't care about that stuff, anyway.

You can simply offer the patient the opportunity to know that you see a lot of drug representatives or that you went out to dinner and learned about this drug, and they probably will say, "Doctor, I don't care. What do you think is the right thing for me to do?" Making the offer is a better way to deal with something that a lot of patients don't think is all that important.

Perhaps if we disclosed the impact that the dinner, the drug rep and the samples have on the costs of medication, the patients might care. Just - maybe.

And that business about being honest about prognosis and information?

It is not as clear that lying is always bad. Think about the use of a placebo. If you think that you can save a patient money and save them a lot of risk and side effects by giving them a placebo to see if it will calm their anxiety or help restore their sexual function, I am not sure that it is always wrong to prescribe a placebo. It is controversial, but I am not sure one is always wrong in trying to deal with a difficult or noncompliant patient, or one who has a bad, unhealthy lifestyle.

Gee, do you suppose that being lied to by doctors might make someone a difficult or non-compliant patient? Caplan goes on

Is it wrong to "up the ante" a little bit and scare the patient more than you might otherwise about the consequences that might follow from their bad behavior? I am not sure that that is wrong either. The goal is good, and by being a little bit on the far end of the truth about what could happen to them, I am not sure that it isn't worth it. With respect to the "rosy prognosis," if someone has cancer or Parkinson disease or Alzheimer disease, I'm not sure that they want to hear in the first visit exactly what is going to happen to them or the grim nature of the statistics.

 So...the ends justify the means. Wonderful. I'm not always sure what patients want to hear, either, but there's this amazing, revolutionary thing I do: I ask them. And if they are feeling overwhelmed and don't want to talk any more, I stop - but I don't paint a "rosy" picture.

Look, I'm quite sure that most physicians who answered the prognosis question with "disagree somewhat" do know that it's wrong to lie to patients, and they find themselves withholding information or avoiding questions more often than flat-out speaking falsehoods. And I do understand that it's deeply, desperately hard to actually tell people they have Alzheimer's or cancer or diabetes. Docs are not trained to do this, and we have woefully little support to deal our own emotional responses to those encounters, let alone the emotions of our patients. But the answer to that isn't to condone lying, or collude in withholding - it's to learn to do this better, and to take care of ourselves so that we can take care of our patients. We must stand firm about this, because our ability to behave as professionals is under attack.

It's not enough that my colleagues - and at least one of our leading ethicists - shrug at lying; now we have politicians telling us we should lie to patients - specifically to women - in order to control their behavior. Legislators have been meddling in medical practice for years, since silly women can't be trusted to do what's best, and colluding, evil doctors can't be trusted to guide them because we're in it for the money (but drug companies and their representatives are, of course, beyond reproach, because they're in it for - what? the public good? I'm confused). Now that political meddling has reached a point that leaves me breathless with fury: we are told to violate one of the basic precepts of professionalism in order to prevent a woman from choosing a legal and medically indicated procedure. We will abrogate the trust of our patients, and set ourselves us as agents of the state, acting against the best wishes of women who are already desperate and who need us to live up to our values.

First, do no harm. We recite that in unison, faces shining and futures bright, as we hold our new diplomas in our hand at our medical school graduations. First, do no harm. Few things are as damaging to relationships as lying. I'm a doctor, dammit. That should mean something. That has to mean something. If it doesn't - if we accept the shrugs, and the "so what", and the imposition of state-sanctioned dishonesty, than we are not good enough doctors. We are not the doctors my father thought we should be, and we should be ashamed of ourselves.

Meme, Again ~ by Jay

My friend Lynn did the meme I posted and I loved her questions so much I had to answer them.

1.         What is your favorite photograph of yourself? When and where was it taken?

 My very favorite all-time photo was taken when Eve was an infant, in our kitchen, and it looks as if the two of us are singing to each other. Too recent to post here. This one is a close second - John took it in the fall of my senior year of high school. We spent a day picking apples with friends. They were good apples. It was a good day.







2.         What is your greatest artistic or musical talent?

Not sure if I'd pick poetry or singing. I sing more often, but I am a better poet than I am a singer.  Perhaps I need to write more poetry.

3.         Are you thrifty, or does money burn a hole in your pocket?

I am value-conscious, and when I set myself a budget I do not exceed it, but I am willing to pay for convenience and comfort and to use money to buy myself time. I don't think of myself as thrifty, but I am not extravagant.

4.         What is the last new thing you learned?

Um. Fact or skill? Fact - that Kevin Youklis is Jewish. Skill - how to make pretzels. Damn good pretzels, too. 

5.         What are three songs that you count among your lifetime favorites?

Hallelujah, Leonard Cohen (and this is my favorite version, by k d lang)
When I Was A Boy, Dar Williams (I could include about five Dar songs, but this is the one that made me fall in love with Dar, and the video is gorgeous)
The Lord Bless You and Keep You, arr by Lutkin

6.         Do you wear lipstick? Any special color or brand?

Rarely. When I do, Clinique, pale pink.

7.         Tell us about your favorite pair of shoes.

Dansko clogs, shiny and patterned. LOVE them.

8.         Are you afraid of heights?

Yes. I will never see the Mission: Impossible movie where Tom Cruise dangles off a building. Shudder.

9.         Is your closet neat, or more like an episode of Hoarders lurking behind that door?

It's a walk-in closet and I can still walk into it. I'll take it.

10.       What is your guilty pleasure?

Reruns of the original Beverly Hills, 90210 series.

11.       Are you a Rosie O’Donnell fan?

Yes.

Love Letters ~ by Jay

My friend Stephanie asks "When was the last time you gave someone a handwritten love letter?"

Sam and I lived apart for years during our engagement and early in our marriage, and we each have a box of letters stored away somewhere. These days our love notes are more likely to arrive over Email or Gchat, but I still write something for him at every anniversary (not hand-written; I want him to be able to read it) - something private, for his eyes only, and on paper. Every now and then, I find myself moved to write a poem. Stephanie's right about the power of the love letter.

Maybe I'll stop writing to you all now and say something just to Sam.

In Which Arwyn Says What I Could Not ~ by Jay

Because she can write through her anger, and her grief, and see the world so clearly that she makes me cry.

Read this.

Outrage Fatigue ~ by Jay

Hospice folk know all about compassion fatigue - the feeling you have when you're tapped out, when you have no more kindness or empathy to give, when a heartbreaking story makes you shrug or turn away because you just can't do any more. I've experienced compassion fatigue, and when I can take a break - a vacation or an early afternoon or even just a quiet evening at home and an early bedtime - I return rested and renewed.

I feel fatigue now, but it's not compassion fatigue. I read about Trayvon Martin, and the shooting in Toulouse, and the idiocy coming from Rick Santorum, and the vileness of Rush Limbaugh, and the legislation in state after state after state forcing physicians to lie to patients and to rape women who are seeking a legal, medically indicated procedure, and I don't do anything. I don't say anything. I just - sit here. I am numb.

This must be a watershed. Something has to change. We are circling and circling in a widening gyre, and the center cannot hold.

Conversations With My Daughter ~ by Jay

Mom, did you hear that Erica ran away?


Yes. I talked to her mother this morning. 

How long was she gone? What happened?


About 12 hours. She met a man on the internet and she agreed to meet him, and she went with him.

That's scary. Why would she do that?

It's really scary. I think she was pretty angry with her parents. She's still angry with them for bringing her home.

Well, everyone gets angry, but getting in a car with a stranger - that's SCARY.

I know.

I would NEVER do that.

I'm glad to hear it.

I would be too scared to run away. I might get angry and tell you I hate you and I don't want to live in your house any more, but I wouldn't run away.

International Women's Day ~ by Jay

Today is International Women's Day. It is also my mother's birthday. I've always found the conjunction amusing.

There's a radio station in Philadelphia that used to have all women DJs on March 8th (maybe they still do). I remember one commenting that it was an interesting choice to have women work more on Their Day, rather than give them the day off. She wasn't really complaining. She knew that we need to hear more women's voices in the public sphere.

My mother married at 19, happily changed her name and loved being The Doctor's Wife almost as much as she loved my father. Theirs was in many ways a traditional marriage, but my mother always had a voice at home - and in public. When I was in high school, the state tried to shut down maternity services at our local hospital. Mom wrote letters, made speeches, and organized a bus trip to Albany - and the OB floor stayed open. Mom made our local chapter of the American Heart Association start programs for women with heart disease 30 years ago, before it was A Cause.

I never wanted my mother's life. I didn't want to be financially depending on someone else. I didn't want to spend my life being Someone's Child, or Someone's Wife, or Someone's Mother. I didn't want to be singlehandedly responsible for the upkeep of the house, the yard, the cars and the checkbook. And I'm not living my mother's life - but I am grateful, finally, for the example of my mother's voice.

Happy Birthday, Mom. You deserve an International Day.

Spread the Word to End the Word ~ by Jay

I'm getting this in just under the wire...

Today is Spread the Word to End the Word Day, developed by the Special Olympics organization to bring attention to the demeaning use of the word "retard" or "retarded". Amy Julia Becker has a lovely piece on her experiences with her daughter, Penny, who has Down syndrome. As I read her essay, I realized I've never used the word. Never? Hmm. So I thought some more....and I remembered Tommy.

Tommy was Annie's brother. Annie was one of my college roommates. Annie was smart, driven, athletic and ready to fight for her place in the world. Tommy was her older brother, and he couldn't really talk very clearly. I don't know what Tommy's diagnosis was; I do know that at 23, he was not capable of living independently, and that part of the reason Annie was so driven was that she knew she'd have to take care of Tommy - at least financially - after her parents died.

Annie was an engineer and a runner and a horseback rider and a musician, and when we were juniors I manged to convince her that she had time to play clarinet for a musical I was stage-managing - The Me Nobody Knows. Somewhere in that play there's a scene set on a playground, with two boys ragging on each other until one calls the other "retarded", and everyone starts to laugh. Annie wasn't laughing. The first time we ran that scene, she got up and walked out because she couldn't hide her tears. It took some doing, but we eventually convinced the director to change the line.

I don't think I used the word much even before that - it's not my style - and I certainly didn't use it after that. I've survived over 30 years without those words in my vocabulary, so it can be done, and it's worth it. For Tommy, wherever he is now. For Penny. For Max. For ourselves.

More Meme ~ by Jay

MomVee did the meme I posted on Monday and I loved her questions so much I decided to answer them.

1) If you could time travel, what would you do?

Go back to high school and really appreciate John. He says I did, but I think he's wrong. I didn't appreciate Sam at first, either, but I've had time to make that up to him.

2) Who is your most surprising friend?

Surprising to whom? None of them are surprising to *me*, because I know them and love them. Probably the most surprising to other people is one of my very first online friends, from the old CompuServe Women's Forum. She's a good bit older than I am, and our backgrounds couldn't be more different, but we are sisters of the spirit and I adore her.

3) What is your lifetime favorite article of clothing?

A blue dress I owned in the mid-80s. Very simple, very comfortable, with a white belt. I just loved that dress.

4) If you had a terrible earworm, what song would you sing to try to get rid of it?

Oseh shalom. I love the message (may the One who created peace bring peace to us and to the people of Israel, and to the entire world) and the tune sinks deep into my soul.

5) Is there a celebrity whose death you would mourn with unusual depth?

Pete Seeger. Few people really live their values the way he does. Plus the music. And if Pete Seeger isn't enough of a celebrity, well, that's a shame.

6) What's the best thing about your home?

The location - close to everything that's important to us, so no punishing commutes. I love my house, but the location gives us time, and that's much more important.

7) What is your most vivid memory about learning to drive?

My shy, soft-spoken, non-confrontational father getting out of the car and berating the man behind me who had been honking and gesticulating at me because I was driving the speed limit on Ridge Street, where people normally zip along 20 or 30 miles above the posted limit.

8) What do you think about ironing?

I actually enjoy it but I hate putting the board up and down, so I never do it.

9) Why did you choose the picture you posted above?

I chose the picture in my original post because I wanted to honor the meme and actually  post something of myself, but I'm still clinging to some psuedonymity. And I love that shot - it shows how truly happy I was on our wedding day.

10) When did you first feel really grown-up?

The day my father called me to ask me for medical information.  

11) Where do you want to travel but fear you never can?

Australia. I just don't know if I could stand the flight or afford to fly first class.

One of Those Things-About-Me Memes, with Something Extra ~ by Jay

I have an unexpected day off and I've been slogging through tax-related and work-related paperwork (this is a Good Thing - I leave for a conference tomorrow and it will be much more fun knowing this crap is taken care of). Just when I wanted a break, here's TMae with a meme! Yay!

Here's the fine print, copied and pasted: Post a picture of yourself, tell us 11 things we might not know about you, then write 11 new questions and tag some friends to play along (let them know you tagged them!)

There's the photo. It's not recent - did you figure that out? And yes, that's the neck of my wedding dress you can see, so that's me 27 years ago.

11 things about me...

1) I really don't like small dogs (cocker spaniels are my lower limit for size).
2) I wish we could have a cat. Or a rabbit.
3) If I could, I'd wear Birkenstocks all the time.
4) I love to be near the water - river, ocean, lake, don't really care as long as it's water.
5) I completely suck at Temple Run.

6) I do every New York Times Crossword Puzzle and can't go on to the next one until I've finished the current one.

7) I love mystery books, and I have to read each series in order.

8) When I'm anxious or stressed, I re-read some my favorite books from childhood, and I've spent a ridiculous amount of money on out-of-print books so I can do that whenever I want.

9) I am a boring restaurant companion, because I want to order the same thing every time once I've found something I really like. Conversation is lively, though, I promise.

10)  I had to stop drinking caffeine a few years ago, and I don't mind decaf coffee but I really really miss Cherry Coke.

11) I might make soft pretzels this afternoon.

TMae's questions (which I didn't look at before doing my list of 11, really. And I'm not so good at following directions, apparently) :

1) Where have you lived in the course of your life?

New York 'burbs, New Jersey, California, Colorado, and here

2) Where would you like to live before you die?

Somewhere on the water.

3) What do you think about before you go to bed at night?

 People I love.

4) Do you have a bike? Do you ride it?

No and no. I'm not proud of that, but it's true.

5) What's your favorite book?

I have no idea how to answer that. It's like trying to pick my favorite person - I could narrow it down but I couldn't pick one. I adore Laurie Colwin's Happy All The Time  but there are so many others.

6) What’s the last great book you read?

I finally read "Middlemarch" for a book group and it was SO much better than I expected it to be.

7) What’s a song that tells your story?

Again with the "pick one". I'd have to say Dar Williams' My Friends, although it doesn't tell the story of my life with Sam. For that I'd choose The Indigo Girls Power of Two.

8) What’s your favorite smell?

Cinnamon. Preferably in something that's baking. Mmm.

9) Would you do things differently if you could go back and have a do-over?

I'd move my body more - find some kind of exercise I really like and stick with it. And I'd eat more vegetables. Other than that...nope.

10) Who would play you in the movie?

Mindy Cohn, Natalie from "Facts of Life". No question.

11) Do you have a favorite cocktail? What is it?

I love a good mojito, but overall I'll take a nice glass of wine if I have a choice.

And my questions, for anyone who would like to answer them (drop me a comment if you do)

1) Sunshine or starlight?
2) Do you have a pet? If not, would you prefer to have one? If so, would you prefer not to have one?
3) What food have you tasted that you will never eat again?
4) What food have you not tried that you'd like to taste?
5) What's the farthest you've ever walked?
6)  What surprises you the most about your life now?
7) What's the best concert or performance you ever attender?
8) How do you feel about speaking in front of groups?
9) How old is the oldest person you ever met? Who was that?
10) Who's your favorite comedian or comic actor?
11) Do you own a functioning record player?


OK, time to get back to work...thank, TMae, for the fun idea.