i'm off!

I am off to attend (and speak at!) BlogHer in San Francisco. And since my laptop is still at the computer hospital, I will be offline for the next few days.

I am in for a late night, because no matter how much I have been scrambling. I will be glad to be done and on the road.

As for BlogHer, I am, in equal parts, excited and completely panicked.

If you are going too, and see someone whose blog has "cancer" in the title, please don't assume that she doesn't want to have fun, OK?

I will be home late on Monday night and have chemo the next morning, so not to worry if you don't hear from me again until July 23rd.

Meanwhile, I have two new posts that I haven't told you about up at MyBreastCancerNetwork.Com. Living With Metastasis: Younger Adults Living With Cancer and a piece that was very hard to write but deserved to be written, Punk Rock Mommy: A Tribute.

I'll be back at the keyboard in a week!

The National Coalition On Benefits' Oppostion to the Wyden-Bennett "Healthy Americans Act"--Maybe They Like It After All?

The National Coalition on Benefits is a group of more than 150 of America's biggest corporations as well as the U.S. Chamber of Commerce and the Business Roundtable.They wrote a letter to Senators Ron Wyden (D-OR) and Bob Bennett (R-UT), cosponsors of the bipartisan "Healthy Americans Act," telling them that their bill was a non-starter because it dared to mess with ERISA. The Wyden-Bennett bill

Disease Management, Real Service, Don't Know About the Savings

Dan Scott is a real disease management patient and not an actor. So to help tell his story we hired someone who interviews disease management patients.

Dan: It was the weekend and I had questions about my metabolic syndrome, sleep apnea and numb feet.

James: You had coaching needs. How transtheoretical….

Dan: I called my disease management organization. They were so engaging and supportive.

James: I heard they were also quite attentive… and solicitous…

Dan: It was refreshing to talk to an actual health care provider who could give me the information I needed.

James: Health care providers, behaving like providers. Brilliant.

(Voice Over) Disease management. Real service, don’t know about the savings.

+++++++++++++++++++++++++++++++

MEMO – with apologies to Medicare Meets Mephistopheles.

DATE: July 14, 2008

TO: Underling Demon 666

FROM: Underling to the Underling Demon 666

RE : Medicare Improvements for Patients and Providers Act of 2008

As you have requested, here is the transcript of a recent conversation overheard between Nancy Pelosi (D – CA), Speaker of the U.S. House of Representatives and Harry Reid, (D- NV), Majority Leader of the U.S. Senate.

P: Good job on Medicare Advantage.

R: Thanks Nancy, but the House really deserves the credit for linking it to physician payments in the first place.

P: We learned a very important lesson here.

R: That one ‘Seniors and Medicare’ trumps five ‘Children and SCHIPS’ every time?

P: Well that too. But, no, that the ‘backlash' is alive and well and we can channel it!

R: Now don’t you start getting frisky with your San Francisco ways on me! I don't believe in crystals.

P: Silly boy, I’m talking about the backlash against managed care.

R: You’re right! The only thing physicians detest worse than Medicare is managed care!

P: It would have never occurred to me to tie the 10.6% fee schedule cut – which we were going to cancel anyway – to undermining funding for Medicare Advantage.

R: Nancy you’re a genius.

P: This time we didn’t have to do the heavy lifting. The doctors did it for us.

R: Are you thinking what I’m thinking?

P: Oh Harry, how naughty!

R: No Nancy, I’m thinking about January 2010 when a 21% cut is scheduled to kick in. Instead of blaming the SGR calculation, we can repeat linking it to the Medicare Advantage funding. To cancel the scheduled cut, we'll force the Republicans to vote against MA all over again!

P: Why bother? Obama will be President by then. He’s going to bring in his own reforms.

R: Maybe, but the White House has a way of changing people. Plus, he’s shifting a lot of his positions already. In contrast, you and I have been out to save Medicare for years. We’re not going anywhere.

P: Think the MA Plans will figure out what we’re planning?

R: Of course, but to stop us, they’d need to start now to repair relations with the physicians in their networks!

R: Ha ha ha!

P: Ha ha ha!

Underwriting Cycle or Medical Trend Rate Cycle?

Analysts trying to predict the future of the health plan business who are looking for an underwriting cycle will miss the real turns in the market.Recent health plan earnings issues have once again raised the question, do we still have an underwriting cycle, and are we entering one?In my mind, anyone trying to understand the profitability of the health plan business who concentrates on whether or

Shared Decision Making via the Archives of Internal Medicine: Are the Physicians Responsible for Doing It or Making Sure It's Done?

In a previous post, the Disease Management Care Blog alerted readers to a study demonstrating that the open access dimensions of the ‘patient centered medical home’ (PCMH) was not easy to implement and may have little impact on patient perception of quality.

The DMCB wants to alert readers to the arrival of another study that addresses the assumption that doctors – because, well, they’re doctors – are intuitively inclined provide to another element of the PCMH. This one had to do with shared decision making, or helping ‘patients actively participate in decision-making [bolding mine].’

In the July 14 Archives of Internal Medicine [not online yet at the time of this posting] Young and colleagues¹ looked at the ‘shared decision making’ behaviors among 152 primary care providers in three U.S. cities who were surreptitiously visited by one or two ‘standardized patients’ (i.e., actors) feigning the classic symptoms of depression. Shared decision making was defined by the authors of this study as a ‘collaborative effort between physician and patient, who share information, preferences and concerns as they negotiate a course of action.’ The authors used an internally contrived scale based on 12 shared decision making dimensions on a 0-4 scale (zero none, 4 a lot) to analyze recorded conversations between the physicians and ‘patients.’ 12 x 4 = 48 is the maximum score. The mean score in this study was just over 11, which isn’t too good.

The paper was accompanied by an editorial² in which 8 ‘myths’ were explored:

1. 'Everyone knows what shared decision making is.'

2. 'There is only 1 approach to shared decision making.'

3. 'Physicians [as opposed to patients] alone drive shared decision making.'

4. 'Most physicians engage in shared decision making – at least, they would if they had the time.'

5. 'Physicians do not have the time for shared decision making.'

6. 'Most patients would rather the physician tell them what to do.'

7. 'Patients who do not want shared decision making want their physicians to decide for them.'

8. 'Shared decision making, informed decision making and participatory decision making are the same thing.'

Neither the original study authors nor the editorialist explored the implications of their findings for the PCMH, but the DMCB thinks they are significant. While it’s been recognized that 'physician and practice behavior change’ will be necessary to implement the medical home using, for example, ‘web-based instruments and patient simulation,’ these data from the Archives suggest that mainstream primary care providers have a long way to go before they’ll be able to offer shared decision making in day-to-day clinical practice.

While we await that yet to be discovered secret physician-behavior-change sauce, the DMCB would like to point out that there are other approaches that depend less on the physician and more on other strategies. They are not only very effective but ready to go. In fact, they're already being implemented.

The Disease Management Care Blog suggests there is a myth number 9: ‘It is up to the physicians to provide shared decision making in their day to day clinical practices.’ The DMCB suggests they should be responsible but can rely on other professionals and/or systems to implement it more effectively.

Here are the references:

1. Young HN, Bell RA, Epstein RM, Feldman MD, Kravitz RL: Physician’ shared decision-making behaviors in depression care. Arch Int Med 2008;168(13):1404-1408

2. Hansen J: Shared Decision Making. Have we missed the obvious? Arch Int Med 2008;168(13):1368-1369

breast envy

Originally posted at Mothers With Cancer.

I find myself continuously inspired by the group of bloggers in our little community. Today's post was provoked into being by Lahdeedah's post "The Road to OK" and imstell (Stella)'s response, "Acceptance."

I have always felt ambivalent about my breasts. As a young woman (I was an early bloomer, it must be said) they brought me attention that was at times unwelcome and at times confusingly gratifying. They fed two children for a total of more than three years. Once large and round, they were irrevocably changed by motherhood, as my nipples moved southward and seemed to stretch ever more closely towards my toes.

And then my right breast betrayed me, playing host to the tumour that would eventually spread to my lymph nodes and then to my liver. On February 2nd ("Groundhog Day!" I exclaimed when my surgeon told me the date. I had to explain that I was not objecting on the basis of this being a special holiday for me), I had a mastectomy.

I feel no less ambivalent now that I have only one breast. I was consumed with terror before the surgery and relieved afterwards to see only one bandage across my chest. I was frustrated by drains and then by the fact that healing seemed to take a step back two weeks after the surgery (no one had warned me this would happen).

More than two years later, I am still plagued with post surgical issues, including a limited range of motion and lymphedema in my chest, back and rib cage (when I showed this to my surgeon, couple of weeks after surgery, he shrugged it off as "just back fat," so loathe was he to admit that he didn't know. He actually said that the fact that my breast was no longer pulling it forward the fat was sticking out more. My physiotherapist just about had an aneurysm when I told her that story).

Radiation left me with serious scarring that exacerbated the lymphedema and made it painful to wear a prosthesis. Most days I am perfectly fine with this. At other times, I feel extremely self-conscious. Some days I dress to camouflage and some days I am quite content with the altered landscape of my body.

It is in the summer time when I most miss having two breasts, when I sometimes long to look "normal" in a tank top. It is also when I find myself (as Lahdeedah confesses in her post), ogling other women with envy.

However, I remind myself that how I look is perfectly normal to those who know and love me. My older son has even said as much, as has my spouse. And along with the lines around my eyes and mouth (I smile a lot), the stretch marks on my belly (I have borne and birthed two beautiful boys) and even the little scar that runs from the corner of my left eye (I hit a metal bar when I was chasing a cute boy in my class during a game of tag in Grade 6), the scar on my chest and my asymmetrical shape tell the story of the experiences that have shaped who I am.

The following poem was originally posted last summer:

voyeur

Women's breasts emerge in the heat of the summer.
Big ones and small ones.
Perky ones (I could fit them in my hand).
Breasts nursing babies.
Freckled cleavage.
Wrinkled cleavage.
And breasts that can't possibly be real.
I stare at women's breasts now with great fascination.
And not a little envy.
I have never seen a woman with one breast.
Except in the mirror.

"Wall Street Comes to Washington"

The event I look forward to every year is "Wall Street Comes to Washington," Paul Ginsburg's (Center for Studying Health System Change) annual merging of Wall Street and policymakers in a lively discussion of health care from both perspectives.The last few years I have gotten to participate on the health insurance market panel. The session also had a panel concentrating on hospital, physician,