August 16th, 2022

Story as Evidence — Our Story

Edvard Munch, Towards the Forest II, 1915.

JAMA has a long-running and quite wonderful weekly feature called A Piece of My Mind, in which clinicians (mostly physicians) write about the human side of medicine. Not the place for dry descriptions of study designs or laboratory methods, A Piece of My Mind instead welcomes anecdotes, opinions, and emotions.

After all, as Drs. Preeti Malani and Jody Zylke wrote in a 2020 piece celebrating 40 years of the column, “physicians treat patients, not just their diseases, and confront complicated issues and circumstances daily.” In many of the columns, the table is turned, and the physician-writer shares what it’s like to be the patient — the person on the other side of the stethoscope, the scalpel, the chemotherapy infusion, or the psychotherapist’s office.

There’s a real strength to this form of communication, which at times can exceed the influence of even the best-designed clinical trial. While a single case might not stand up to a rigorous statistical analysis, a compelling story about a single patient — either as the caregiver or the person receiving the care — can have remarkable power.

Dr. Louise Aronson brilliantly described this phenomenon in a 2015 submission entitled “Story as Evidence, Evidence as Story.” She wrote:

In the public arena, the N-of-1 personal experience is considered not only data worthy of consideration but also sufficient to establish expertise. With a frequency and consistency that should make those who question the role of anecdotes in discussions of medicine and science rethink their position, a single, well-told story of human suffering trumps the most eloquent explanation of a large-scale trial.

I thought of this “Story as Evidence” phenomenon when hearing that the Supreme Court overturned Roe v. Wade, which eliminated the constitutional right to an abortion after nearly 50 years. Naively, I thought growing up that this right to choose would never be taken away.

Why is this relevant to A Piece of My Mind?

Because my wife and I have our own story to tell, now more than 2 decades old, and JAMA was kind enough to publish it this week.

13 Responses to “Story as Evidence — Our Story”

  1. Abby Davids says:

    This is beautiful. Thank you for sharing.

  2. Charles Bliss Jr says:

    Thanks for telling us the story. As you say, very compelling.

  3. Daniele Michaud MD says:

    Thank you so much for sharing this extremely personal story, Dr Sax. I have been reading you for years, and find that you are a rare human being (the highest compliment as far as I’m concerned), quite aside from being an extremely clever MD and excellent communicator.
    Keep up the good work, we need more people like you.

  4. Stephen Greenberg says:

    Every time I read something you have written I feel compelled to say thank you.

  5. Kimberly Smith says:

    Hi Paul, Thank you for sharing this remarkable personal story. Stories like yours are so important as we seek to address the ugly stereotypes and misinformation about the value of choice for women and families. Best, Kim

  6. Jenae Limoges says:

    Dr. Sax,
    To you, your wife and your family, so sorry for your loss, since all these years later it is still a loss. And thank you for your willingness and bravery to share such a personal story.

    • Allen Pachtman MD says:

      Dr. Sax:

      Thanks so much for sharing this very personal and moving story. I can imagine the pain you felt at that time- and probably still do at times. Other similar stories have been in the news recently since the overturning of Roe – not much evidence it has convinced people on the other side of anything…

      I look forward to your continued blogs on medicine, science, and life! It remains the first e-mail I open in my mailbox.

      Allen Pachtman MD El Segundo, California

      PS: Does your wife have a blog?

  7. Sonali Kulkarni says:

    Your humanity and brilliance never cease to amaze me. Thank you for being you and sharing this deeply personal story.

  8. Leslie Linares-Hengen says:

    Thank you for sharing such a personal story and the difficult decision you and your wife had to make. Agree with many of the commenters above.

  9. Deborah Foley MD says:

    Dear Dr Sax, for many years you have been my go-to ID resource in my role as director of employee health at a community hospital. I retired shortly before Covid, but I have continued to rely on your expertise throughout.
    I am sorry for you and your wife; the loss of a child is forever. I thank you both for sharing your story in all its raw emotion and medical complexity.
    As a 70y/o woman and MD I did not imagine that the battle for choice would need to be picked up by my daughter and granddaughters. I believe your story will help sustain them in their fight.

  10. Michelle Nemer says:

    So moved to read this story. Thank you to you and your family for sharing. And so glad to have a man contributing this viewpoint. This isn’t just a woman’s issue. My best to you all.

  11. Brian R E Schultz, MD says:

    That is a truly remarkable story. It brings me to tears in the coffee shop I am reading it in. You and your wife showed bravery in that difficult decision and courage in sharing it. Thank you.

  12. Chuck Hicks says:

    Hi Paul – your sharing of this very personal story speaks to your compassion and your humanity. Thank you for giving voice to such an important issue.

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HIV Information: Author Paul Sax, M.D.

Paul E. Sax, MD

Contributing Editor

NEJM Journal Watch
Infectious Diseases

Biography | Disclosures | Summaries

Learn more about HIV and ID Observations.