Abstract
Background
During goals of care discussions, parents often ask pediatric clinicians, “What would you do if it were your child?” Though prior work has explored whether clinicians should answer this question, little published medical literature has explored what clinicians should say to this question. This Fast Fact will provide guidance for clinicians faced with this challenging question in situations in which there are reasonable clinical alternatives, and the choice depends upon family values. Of note—throughout the Fast Fact, “parents” will also refer to guardians and other caregivers.
Why parents ask
Existing literature explores why parents ask clinicians the “What would you do?” question.1–6 It is often interpreted as a cognitive question, with parents desiring a literal response: “If this were my child, I would …”.1–3 Implied is that parents ask because they genuinely want to know what we would do. Other proposed reasons relate to an emotional response to difficult news: parents are grappling with their own emotions and need support or want to know that we care and desire connection. By asking what the clinician would do for their own child, parents combine emotion and cognition, seeking to bridge the gap between professional and personal to synchronize scientific expertise with empathy.
Should the clinician answer?
Prior work has demonstrated that clinicians in the neonatal intensive care unit typically do not provide clear guidance when parents ask, “What would you do?” or “What do you think I should do?”.7,8 Believing it is not the clinician’s choice to make, a common response might be “It’s a personal decision.” 8 Such a response may lead parents to feel abandoned and does not give them the clinical guidance they are seeking. We believe that when parents ask us as clinicians to make a recommendation, we should be willing to make one as long as we are also doing the work to base it on our interpretation of their values. 9
Common pitfalls
The most common pitfall is to answer without understanding the reason the family is asking. Assuming the family does not understand the choice leads to providing more medical information or reiterating cognitive information already given. 8 This can make parents feel overwhelmed or frustrated. Alternatively, the clinician may believe the family is asking what they would do for their (meaning the clinician’s) child. This may blur the clinician’s distinction between their personal values and medical management and thereby result in mistrust, confusion, or guilt.4,6,10
What clinicians should say
First, acknowledge the question and its emotional weight. One might say, “I think I would cry for a long time” or “I think I would do exactly what you’re doing. I want you to know that I am here to help you figure out what to do.” The exact words matter less than acknowledging that as a human you see what a hard question this is. Next step, explore. Rather than jumping to a direct answer, explore the meaning of the question, “Tell me more about why you’re asking.” If, based on their response, it becomes clear that the question really is not a cognitive one and is instead an emotion or sign of distress, clinicians should respond to emotion with empathy. The clinician might say something like, “If I were in your shoes, I might want a little more time to work through the decision. Would that be helpful?” If it seems a parent would like a cognitive answer to the question, clinicians should gather information about parent values, “If it’s OK with you, I’d like to ask you some questions to help me understand what’s most important so I can answer your question”. 8 Finally, make a suggestion based on values and clinical reasoning, and tie that recommendation to those values: “I would suggest this…because I heard you say …” In this way, the clinician is pairing their clinical expertise with knowledge of the family.
Relevant differences between pediatrics and adults
Though our suggestions apply both to pediatric and adult medicine, some considerations are unique to pediatrics. In pediatrics, patient values are sometimes unknowable, and outcomes are highly uncertain. 11 Clinicians should consider key differences when developing their approach. For example, in adult medicine one might explore values by asking a family member, “What would your mother think if she could hear what we’re saying?” 12 In pediatrics, questions like “Knowing that news, what is most important for you as parents now?” and “When you think about your daughter’s future, what worries you?” can be useful. Because many parents may have never explicitly thought about what life might look like for a child facing a life-threatening diagnosis or long-term serious illness, these questions provide a scaffold to help parents think about what’s most important and enable clinicians to make better value-based suggestions.
Summary
By asking parents what matters most to them, clinicians can learn enough about the family to reframe the question, “What would you do if it were your child?” to a potentially more useful response like, “If I were in your shoes…” (because now they understand more about who that parent is) “I would do … because ….”
Footnotes
Author Disclosure Statement
No competing financial interests exist.
Funding Information
No funding was received for this article.