Health AGEnda

Adventures in Choosing Wisely

Posted in category Palliative Care, Uncategorized

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Amy Berman prepares for her image guided radiation therapy.

Amy Berman prepares for her image guided radiation therapy.

I live with stage IV cancer—cancer that has spread to the far reaches of my body, an incurable disease, a terminal diagnosis. But if you saw me—if our carts randomly bumped into each other in the supermarket—you would never think I live with serious illness.

And let me add that I feel as well as I look, just great.

I am four years into one of the most devastating diagnoses and I haven’t visited a single hospital. This means that my care is much lower cost than others in my situation. How is this possible?

One answer is that my health care team and I choose wisely.

Choosing Wisely is the name of a national movement led by the ABIM (short for American Board of Internal Medicine) Foundation and funded by the Robert Wood Johnson Foundation that engages more than 60 provider organizations to identify procedures, tests, and treatments that deliver quality care at a lower cost.

The evidence-based recommendations coming out of the provider organizations inform clinicians and the public to improve the quality of care, goals the John A. Hartford Foundation supports. In May, I was a panelist on the Google+ Hangout event Choosing Health Care Wisely, sponsored by the Robert Wood Johnson Foundation. And Hartford Foundation grantee the American Geriatrics Society partnered with the Choosing Wisely campaign to create a list of Five Things Physicians and Patients Should Question.

Recently, I had an adventure in choosing wisely.

I felt a deep pain in my back, one like I had never felt before. It was not helped by changing my position or taking an Advil, and it only got worse over three weeks. I was due for a bone scan, which my health care team uses to track the spread of the cancer in my lower spine to avoid a fracture. But the bone metastasis had never caused me pain. And this deep pain wasn’t anywhere near the bone metastasis.

The bone scan showed a new spread of cancer to my fifth rib and a tiny portion of the sixth rib. It was exactly where I felt the gnawing pain. After consulting with my palliative care team, I opted for radiation therapy. Radiation therapy is the standard approach for treating pain due to the spread of cancer in the bones.

But my team and I wanted single fraction radiation therapy—just one dose of radiation—instead of 10 or more doses. That’s the recommendation of Choosing Wisely. Single fraction—one bigger dose—means quicker relief, significantly lower cost, and research on more than 16,000 people shows that the health outcomes are just as good.

It’s astounding that roughly 96 percent of folks in my situation, here in the United States, get 10 or more doses of radiation. The single fraction alternative offers three significant advantages: Better health. Better care. Lower cost. It is estimated that the average cost for an episode of treatment drops from $7,500 to $5,000 when the Choosing Wisely recommendation is followed, with no change in health outcomes. My radiation oncologist, trained at McGill (the Harvard of the north), said that single fraction radiation therapy for bone metastasis was the gold standard where he was trained.

It was my turn at bat and I was choosing wisely.

Then it happened. A glitch.

It’s astounding that roughly 96 percent of folks in my situation, here in the United States, get 10 or more doses of radiation. The single fraction alternative offers three significant advantages: Better health. Better care. Lower cost.

My radiation oncologist, a brilliant, young Andrew Garfield look-alike, told me that he needed to perform image guided radiation therapy and my insurance plan did not want to cover it.

The reason he felt it was necessary to use the image guided method was because the area requiring radiation was next to my spine. If the radiation hit my spine, it could mean temporary or permanent paralysis. I would still receive a higher single dose of radiation, and the difference in reimbursement to him would be nominal. He thought it might be $20.

To be exquisitely clear, my insurance plan would cover the basic single fraction radiation therapy, but would disallow the claim (for a few more dollars) if image guided radiation therapy were used.

So what did the very savvy radiation oncologist, and star of this blog, do?

He told the insurance plan that he would be forced to do the standard treatment course of 10 doses instead of single fraction radiation therapy at a cost of many thousands of dollars more to the plan if they did not approve the paltry few dollars to ensure the safe delivery of single fraction radiation therapy next to my spine.

That did it. The treatment was approved. My health care team and I chose wisely. The one dose worked brilliantly … a walk in the park. I traveled to a meeting the very next day, smiling.

I am a strong supporter of Choosing Wisely. My care team and I have consistently followed the recommendations since 2010—before Choosing Wisely existed. I walk the talk of value in the way my care is structured and have saved roughly $1 million to date while feeling well and working.

Based on my recent adventure in navigating a potential roadblock to Choosing Wisely, I have a recommendation to add: Include payers in the mix of organizations working to forge high-value care. I will be watching to see if my insurance plan is at the table.

Editor’s Note: This is the latest in a series of Health AGEnda blog posts by Amy Berman chronicling her health and care since she was diagnosed with Stage IV inflammatory breast cancer. For earlier posts, please read:

Narrative Matters, The Next Chapter: Amy Berman Reflects On ‘Living Life In My Own Way’

Breast Cancer: Are We Making Strides?

Stunning New IOM Report Reframes How We View Cancer

Expecting Great Beginnings—and Endings

Transparency and the Teachable Moment

The Essential (Before I Kick the) Bucket List

Health Affairs Focuses on Cancer

Think Silver-Not Pink-for Breast Cancer Awareness Month

Can the Blind Lead the Seeing?

Making Hard Decisions Easier

I’m Dying to Know

Can Good Care Produce Bad Health?

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20 thoughts on “Adventures in Choosing Wisely

  1. I am afraid if it were me I might climb under the covers and hide from everyone. But Amy Berman faces down fear and anxiety by saying what she feels and needs- and making the system work. An all too rare example of what we like to call “person-centered care”- Amy’s clarity and honesty about what really matters most- quality of life and function- has her happy, working way more than full time and doing a whole lot of good while she’s at it. My respect and admiration for Amy is profound.

  2. You both inspire and educate. Thank you for sharing the steps in your journey so we can learn and find the courage that you possess. I am grateful to see how you put Choosing Wisely to work. I knew about the campaign but had not incorporated it into my own health care. I have now gone to the website, reviewed the lists and shared them with others.

  3. As always, Amy, you share your good sense and appreciation for honesty with grace and humility, all of which seem to be in short supply when it comes to our health care enterprise. Deepest respect.

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  5. Amy, I so appreciate your willingness to share your experiences as your personal and professional worlds collide. Anytime I reflect on my own breast cancer journey 14 years ago, I really wonder how those without our access to information navigate the system and the overwhelming choices we are faced with when we are at our most vulnerable. Look forward to your next post!!

    • Lisa, fortunately everyone has access to the recommendations in Choosing Wisely. Yet they may not understand in lay language what it means for their health and pocketbooks. I hope the blog encourages people and families to be activated consumers making value-based decisions about their care in partnership with their health care team. Wishing the very best always, Amy

  6. Thanks, Amy for sharing this blog and the video so we can see you, and hear your candid and provocative voice. You are the embodiment of active wisdom, providing a powerful, and truly uncompromising, argument for patient-centered care and demonstrating that it is both possible and desperately needed.

  7. Amy, Your personal story demonstrates that Choosing Wisely is not an academic concept but an actionable and critical component of patient-centered care. To honor a person’s wishes means that we must first hear and understand their values and wishes. You have demonstrated how that can be done, and you have done so with grace. It is an honor to share your story and learn from your experience.

    • Dear Margaret,
      It was wonderful to see you at Grantmakers In Aging. We agree that you can’t have patient-centered care without input from the patient. As the director of a hospice you honor people’s wishes every day. Thank you, Margaret, for chiming in about Choosing Wisely and for your support of good care to the most seriously ill.
      Warmly,
      Amy

  8. Another terrific and inspiring blog, Amy. Just this month, our health plan (HMO) would not cover my husband’s request for a second opinion on recommended chemotherapy, despite the literature that suggests chemo is not very effective in his diagnosis. They would rather pay thousands of $$ for chemo, rather than $600 for a consult with the west coast experts that might save them all that money. Go figure!

  9. Dear Amy,

    I love your quote: “So what did the very savvy radiation oncologist, and star of this blog, do?” ~Would make a great Tweet too! Thank you for being such a wise mentor and giving us a clear path we can chose to use as we seek direction for our own personal health journey.

    Love to see you share with us your Radioactive~(Imagine Dragons) version for one of your YouTube pieces.

    All my best Amy!
    Lisa

    I’m grateful for your “No Drama Momma” way you share your wisdom, experience and practical wisdom.

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  11. Amy: your courage is unparallelled and inspiring! What’s most amazing is that your message is not about you, but the people and voices you represent that are often not heard. Thank you for speaking on their behalf Amy. My thoughts & prayers remain with you…always.

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  13. Amy – how do we bottle you up? You are incredible and thank you for sharing. I’m spreading this around to some colleagues. All the best.

    Mimi

    • Thank you for your encouragement, Mimi. And thank you for the important work you and your colleagues at the Administration for Community Living are doing to support health and independence.
      Warmly, Amy

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