by Adena Cohen-Bearak
Back in the spring of 2015, when our project team learned that our grant proposal for our new project Aligning Family-Team Expectations During Surgical Consent had been funded, we believed that surgical informed consent was a simple process. Our thinking went something like this: a family would come to Boston Children’s Hospital, meet with a surgeon to discuss their child’s upcoming surgery, and the surgeon would describe the surgery, present the informed consent information to the family (risks, benefits, alternatives, etc.), answer any questions, and that would be it. Done. Finished. All the I’s dotted and the T’s crossed. Simple.
We decided to start our project by looking deeply into parents’ experience of surgical consultations by asking parents whose children had recently undergone surgery a series of questions: What did they remember most about their discussion with the surgeon? What did they think of the way the surgeon spoke to them? Did they get the information they needed? And how about after the surgery? Was the recovery experience what they expected? Were their expectations aligned – and by that we meant, did the experience of the surgery mesh with what they expected what would happen?
Through this process, we realized that there was nothing simple about informed consent. Not only was informed consent not a simple, one-time conversation, it was actually a complex process that took place in many locations, with many participants, and still sometimes left families feeling confused.
No wonder it was difficult to align expectations between families and surgeons!
Though our initial exploration – utilizing focus groups and interviews – was with a small number of parents, we found out many important things. Parents find the surgical consultation to be a very emotional event. They rarely remember everything that they heard in the discussion. Parents often don’t know what questions to ask, even though providers ask if they have questions. They feel that they need more information about the recovery process, and what possible complications might occur. They don’t know who to go to with questions. Parents do not really know what informed consent is – they see it as the form that they sign before surgery, and they pay it little heed.
We also looked into the literature about informed consent, and what we found fit with what we learned from parents. Research shows that patients only tend to absorb half of surgical informed consent information that they receive. Patients often give clues about their social and emotional concerns, but surgeons often miss the opportunity to acknowledge patients’ feelings. When a patient asks “is this something serious?” surgeons often revert to a comfortable response for them – biomedical inquiries –instead of expressing empathy or uncertainty. While surgeons excel in providing details about surgical conditions and approaches, the literature shows that surgeons could improve in their assessing of patients’ understanding, in discussing risks, and in discussing uncertainties.
These initial discoveries set the tone for the project, and have informed all our decisions moving forward. By basing our project on the actual experience of parents and families (backed up by relevant literature), we are able to offer surgeons and other surgical staff suggestions on ways to improve their communication with families prior to surgery that are immediately applicable and realistic.