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Into the Unknown: Coping With the Unknowable

September 19, 2023

Editor’s Note: In March 2017, Ms. Coleman’s daughter Justice Hope, who was medically complex and had multiple disabilities, died at age 11. She was the sunshine in the lives of many and communicated using a thousand smiles.

Family Connections with Pediatrics

Sometimes I wonder if I had a superpower, what would I want it to be? Maybe the ability to fly? I watch birds fly by and wonder what it would feel like to soar through the air, free. Or maybe supersonic hearing, so I could catch every mumble or grumble. Most often, I wish I could see the future—just a quick glimpse to see what is coming, how it will work out, or most commonly, I wish I could see the future with my children. And then I return to reality, and accept that I cannot, and will not, ever know everything.

In medicine, there is a lot of uncertainty. As the mother of a child with complex medical needs, this often seemed like the only certainty. When issues arose as early as pregnancy with my daughter’s health, we were introduced early and often to sometimes having more questions than answers. While the challenges and uncertainty did not resolve over time, our ability to talk about and deal with them grew (and in a way became a new superpower: flexibility and accommodation). In this month’s Pediatrics Ethics Rounds section, authors of ‘When the Unknown is Unknowable: Confronting Diagnostic Uncertainty,’ use the case of Evangelina, and her parents Nathalia and Daniel, to explore how to work through a search for diagnosis, the unknowable, and doctor reflections on how they might respond to an unknown diagnosis (10.1542/peds.2023-061193).

Are there different types of uncertainty?

The authors, Dr. Feudtner and Dr. Janvier, who both have interest and tremendous experience in medical ethics, acknowledge that despite advances in medicine, uncertainty has always been present, plentiful, and in many aspects of healthcare. They point out that much of the focus of uncertainty in medicine has to do with prognosis or predicting what may happen with an illness or disease. They identify 2 types of uncertainty in medicine:

  1. Aleatory uncertainty: when you may be able to use probabilities (for example, use information from scans, labs, and symptoms) to learn some information about the unknown diagnosis
  2. Epistemic uncertainty: when you do not have any way to figure out the unknown diagnosis

People respond to these types of uncertainty differently. The second type of uncertainty- the unknowable unknown- can be harder emotionally, and to reach decisions about care. Values and trust may be all one has when a diagnosis and/or prognosis cannot be known. The authors note that doctors are often trained in communicating uncertainty, but not always well trained in asking about patient or family values.

How is uncertainty discussed in this article?

We are introduced to Evangelina, born at 35 weeks via emergency c-section, with a number of medical issues, including a number of masses on her body, massive bleeding, shock, and the need for resuscitation. Although she had many tests and more than 10 doctors consulting, her diagnosis was unknown. The doctor in charge was not sure how to tell Evangelina’s parents that he did not think Evangelina would live when he did not know her diagnosis.

The article goes on to ask two doctors how they would talk to this family and ultimately shares Evangelina’s outcome. Dr. Feudtner walks us through how to move forward amidst uncertain diagnosis. Dr. Janvier’s response focuses on shifting the doctor’s role to support and clear communication about life and death.

What can you do with this article?

For many families, the discussion in this article may sound and feel similar to experiences had with your own child. To others, it may read as conversations you do not wish to have or ones you have tried to start but haven’t been sure how to begin. Sometimes in uncertainty, and in healthcare, we find ourselves surrounded by people, but we feel alone at the same time. However this article lands, know that you are never alone. Perhaps this article can help you understand uncertainty, how it is communicated, and the decision-making process, or maybe this can be a good starting point for setting up a conversation with your child’s doctor about questions you may have.

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