I’ve been running into quite a few caregivers who are providing misinformation to patients who are newly diagnosed. Of course, patients trust their loved ones but as I’m trying to build trust with the patient, it can be difficult to do when you have to “prove” that you are providing correct information. What are other oncology nurses doing to make these situations go more smoothly?

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This is a great question! You’re right, this does happen. In an effort to be “helpful”, loved ones and/or caregivers sometimes misinterpret what they’ve read, visit websites that aren’t reputable, or present what they’ve experienced with another patient as fact, without realizing that in oncology care one size does not fit all. While there may not be one approach to these situations, here are a few things to keep in mind:

  1. Listen to the information provided and gently inquire about the source. There may be a teaching moment that arises. Maybe the source of information was a good one; in this case, your job might be to simply clarify information.
  2. Affirmative statements go a long way. For example, “You seem to be very interested in learning about the different kinds of radiation. If you’d like to know more, here is a wonderful resource/website/article you might be interested in that is kept up to date; I highly recommend it. When either of you have questions, write them down so that you can discuss it with the doctor.” In this case, you’ve praised and affirmed the caregiver’s attempts, which starts to build rapport. You’ve also provided the resource you’d like to give…without creating an awkward situation. There may be times, however, where being more direct is necessary.
  3. Your role is to provide correct information, not “convince” patients or loved ones that you are correct. Whether or not someone believes you may not have anything to do with you personally. For example, some patients have a general distrust of medical providers and thus have skepticism about the quality of the information provided. Some patients will believe everything a medical provider says. By providing the correct and necessary information, you’ve done your job. Consistency is key in your role when working with patients.
  4. Validation is often required. “Lay people” may not always grasp the ways in which two people can have what appears to be the “same diagnosis” and yet have different treatment recommendations; however, their experience with the other person “who had the same thing” is also valid (even if it doesn’t apply currently). The caregiver’s cumulative experience with your patient will soon be proof enough of not only how diagnoses and treatment guidelines differ but also how the role of a caregiver differs depending on the patient.
  5. You may need support from colleagues. If these issues continue, suggesting support for the caregiver may be necessary. An oncology social worker can assist with finding either general or diagnosis-specific caregiver support groups or resources.

In general, assume that the intentions of the caregiver are good; they cope in different ways, just like our patients do. If this is the person that your patient has for support, it’s important to try and tap into the strengths of this relationship as much as possible.