Promoting Accurate and Empathetic ICD Reporting of Pregnancy Loss: A Proposal to Replace ‘Spontaneous Abortion’ with ‘Miscarriage’

The International Classification of Diseases (ICD) is a system used by healthcare providers to classify and code diagnoses, symptoms, and procedures. It is used for medical billing as well as research, allowing for consistent and accurate documentation within medical records and statistics. However, the current ICD-10 code for pregnancy loss before 20 weeks of gestation is "spontaneous abortion." This terminology is not only medically inaccurate but also insensitive to women and families who have experienced this tragedy. The importance of language in shaping our perceptions and attitudes toward different issues cannot be overstated. Therefore, I propose changing the ICD-10 code from "spontaneous abortion" to "miscarriage."

Currently, the term "spontaneous abortion" refers to pregnancy loss before 20 weeks of gestation. However, the word "abortion" has a negative connotation, often associated with voluntary pregnancy termination or elective abortion, and implies that the loss of the pregnancy occurred willfully, suddenly, and without intervention. Additionally, the term "spontaneous" implies that the pregnancy loss occurred suddenly and without cause, which is not medically accurate in many cases. The use of this term can also contribute to stigma and shame surrounding miscarriage, leading to feelings of isolation and emotional turmoil for those affected. Although the use of the term “spontaneous abortion” in medical terminology is not meant to be insensitive or derogatory, its implications are nothing short of devastating.

In contrast, the term "miscarriage" accurately reflects the medical understanding of the condition and removes any implication of blame or wrongdoing. It is a more neutral and sensitive term that better reflects the emotional experience of pregnancy loss. This term also acknowledges that pregnancy loss can occur for a variety of reasons, including genetic abnormalities, hormonal imbalances, infections, and other medical conditions. The medical community has a responsibility to provide accurate and compassionate care to patients, especially during times of vulnerability, and healthcare providers can better serve their patients by using more appropriate and sensitive language. This change can help patients feel heard and supported, which is crucial in a time of grief and loss. In most cases, miscarriage occurs due to genetic or developmental abnormalities, which means that the loss of the pregnancy is not due to any action or inaction of the mother.

In conclusion, the emotional impact of language should be considered when creating or revising diagnostic codes. Changing the ICD-10 code from "spontaneous abortion" to "miscarriage" would be a simple yet significant step towards promoting empathy, reducing stigma, and improving the emotional well-being of those who have experienced this devastating event. This proposal recognizes the emotional impact of pregnancy loss and seeks to provide a more accurate and respectful terminology for healthcare providers, patients, and families alike. Gaining as many support signatures by the June 9, 2023 deadline would demonstrate public support when presenting to the ICD-10 Coordination and Maintenance Committee.

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From CMS.gov:
"Although the ICD-10 Coordination and Maintenance Committee is a Federal Committee, suggestions for coding modifications come from both the public and private sectors. Code request application submissions are due no later than June 9, 2023 to be considered for the September 12-13, 2023 ICD-10 Coordination and Maintenance Committee Meeting."

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My Story:

It has taken a recent experience to light a fire in me that is determined and motivated beyond belief to make a change in the ICD-10 Diagnosis Coding for miscarriage. While at a routine appointment with my OBGYN, I was asked to update my demographic and medical history. When going through my paperwork, I read the words "spontaneous abortion" and it hit me like a ton of bricks. Seeing it listed on the paper, and worse, having to agree it was "accurate" information for my medical history, was a feeling I would never wish upon another grieving parent. 

There was nothing "spontaneous" about my miscarriage. There was nothing "spontaneous" about having to carry my dead son for 6 days before my D&C. This was all while still experiencing pregnancy symptoms because my body had not yet realized that his little heart had stopped beating just a few short days prior. Our son was wanted. Our baby was loved. Seeing those words made me feel like I had failed as a mother for my child. I could not protect him and it already salt to my already gaping wound. It is important to note that this is not a debate between pro-life and pro-choice. Instead, it is a request for more accurate and compassionate wording of a diagnosis that nearly a million women have added to their medical history, each year.

We didn’t just experience a loss,
our child died.

So if you have experienced a pregnancy loss, I see you. I FEEL YOU. Grief comes in waves, and there are days when it brings me to my knees. Whether you yourself have experienced a miscarriage, know someone that has, or even if you have never had to navigate this tragedy, there is something in your soul that should make you feel that this verbatim is just... cold.  With that, I am determined to channel this pain into a driving force. Determined to create positive change through advocacy, action, and a more compassionate health care system. Just know you are not alone in this. WE are not alone in this.