February 2012

When a Leader Becomes a Follower: Health Care Lessons from a Symphony Conductor

Dear Readers,

Leonard Slatkin is a world-class leader of people — musicians, that is –as music director and conductor of symphony orchestras in Detroit and Lyon, France. Previously he conducted the National Symphony Orchestra in my town of Washington, D.C., and has been guest conductor of many other orchestras around the world.

Maestro Slatkin tells a gripping story about his experience as a patient’s companion following his beloved to countless doctor’s offices and helping her to negotiate our confusing and intimidating health care system.

It’s a story of a leader becoming, in one sense, a follower. I see lessons for all of us.  Read on for more.

The Importance of Being There

Through his own heart attack and prostate cancer, and more recently after his companion (now wife) Cindy McTee came down with breast cancer and had a double mastectomy, Leonard Slatkin has learned one key lesson: Being there.

Cindy McTee, herself a well known composer, was there for Leonard in his medical travails, and he was there for her last summer after her cancer was found.

Being there means accompanying the patient to every doctor visit.  As Leonard Slatkin wrote on his blog:

“Cindy was there for me when I had my coronary, making things easier for me simply by knowing that my companion and friend was near. Nothing else matters. When it comes to health and family, everything else comes in second place.

“It seems foolish and maybe too simple, but it is imperative that you go to as many consultations together with the various doctors as possible. If you cannot, make sure that you get the information and updates as quickly as you can. Discuss them in an open and direct way. Do not try to cover up the fact that this is life-altering surgery.”

Being there means emotional support, of course, and that’s value enough for the sick person. But being there with your sick loved one — following him or her to every visit– also can provide other important supports:

• Reality check.  Too many patients — males most notoriously — deny and minimize their symptoms. It’s a self-protective instinct, but a self-destructive one when something serious is going on. As companion and advocate at the doctor’s office, you are there to deliver the unvarnished reality to the doctor.
• Question asker. The advocate’s job is to ask difficult questions that the patient is too scared or overwhelmed or intimidated to ask.  See our past newsletter on tough questions that need to be asked when the diagnosis is muddy, and this newsletter on questions to ask before surgery.

• Memory bank. The advocate performs a vital role by taking notes, both at home beforehand, to create a detailed, accurate history for the doctor, and during the visit to make sure everyone is on the same page and all instructions and advice are understood and recorded.

Being a follower, in this case, doesn’t have anything to do with being passive. It means being there and taking an active role to get your loved one through a trying time as intact as you can.

A Cancer Journey’s Lessons for the Rest of Us

Cindy McTee’s personal account of her cancer can be found on her own blog. It’s a remarkable document in many respects, weaving the ordinary and commonplace with the terrible and strange. A few excerpts that hit me, more as a human being than as a patient safety advocate:

June 25, 2011: “Today, I had a very inspirational and comforting conversation with a registered nurse (Sherry) who will spend a couple of days with us at home immediately following my release from the hospital. Now here’s the best part . . . she is a cancer survivor. Two years ago at the age of 59, she had the same surgery I will have including reconstruction, and she also went through radiation and chemotherapy without missing a single day of work.”

July 15, 2011: “I have had to learn a lot about patience in the last couple of months – to be patient with myself, for one thing. Healing now takes much more time than it once did. And I’ve also learned that cancer treatment is extraordinarily complex, requiring the involvement of dozens of medical professionals from many disciplines. Coordinating schedules is difficult and waiting is often required.”

August 27, 2011: “A dear friend sent me this excerpt about how to live meaningfully with questions.”

I would like to beg you dear Sir, as well as I can, to have patience with everything unresolved in your heart and to try to love the questions themselves as if they were locked rooms or books written in a very foreign language. Don’t search for the answers, which could not be given to you now, because you would not be able to live them. And the point is to live everything. Live the questions now. Perhaps then, someday far in the future, you will gradually, without even noticing it, live your way into the answer.

Rainer Maria Rilke
Letters to a Young Poet

September 6, 2011: “By day 4 [post chemo], I felt little or no nausea and was able to stop taking the anti-nausea medications. Next time, I’ll know how to better deal with the side effects of these – severe, and I mean severe, constipation! Perhaps that’s too much information for you, but I’m trying to write honestly and completely about this process. I’m also finding some benefits of having no hair: it takes me just 15 minutes to get ready in the morning, and now I can wear hats comfortably. No hat hair!”

There’s much more here, leading up to her latest update (as this is written), on the start of 33 sessions of radiation.

If you peruse Cindy McTee’s entries, I think what will shine through as some of the essential ingredients in her journey through a life-threatening cancer include:

p* An upbeat attitude: if I’ve been dealt lemons, then let’s make lemonade! (Or in her case, baldness means a chance to try wigs and hats!)

* Unflinching realism — because upbeat never works without a grounding in reality.

* A close-knit team of superb doctors and nurses who keep the “care” in medical care and who answer questions frankly, thoroughly but kindly;

* Loving support from spouse, friends and caregivers.

She calls her blog “Cure.” Who could have picked a better title?

Some Interesting Health Care Blog Posts

Here is a sampler of some of our recent posts on our patient safety blog that might interest you.

Overtested, Overtreated, Overcharged: Patients who have numbness and tingling in arms and legs — with the eventual diagnosis of “peripheral neuropathy” — often get overtested with expensive but low-yield MRI scans when a diabetes blood test is what they really need.  It’s a too common story in American health care.

Rick Santorum’s (and the GOP’s) Damage Cap Problem: Damage caps unfairly punish the malpractice victims with the worst injuries, and they don’t make medical care any more affordable or accessible. Even GOP presidential candidates dislike caps when it comes to their own family members. (First published in Huffington Post.)

Paula Deen’s Dicey Dance as a Diabetes Drug Spokesperson: Why celebrity endorsements of prescription drugs cause a lot more mischief than good.