Takeaway
Using the word “need” to describe a treatment option may mislead patients and loved ones into believing it should be pursued. Prioritizing patient values and preferences may help reduce this risk.
Lifelong Learning in Clinical Excellence | September 18, 2023 | 3 min read
By Gina Piscitello, MD, MS, University of Pittsburgh Medical Center
“I was told my mom needed a tracheostomy. Why was it placed if she’s going to die anyway?” The patient’s daughter shared this with me through tears. The patient had been in the hospital for two weeks with acute respiratory distress syndrome from a viral pneumonia and hadn’t regained consciousness. The daughter asked if her mother would be able to improve enough to go home. I replied I believed her mother wouldn’t be able to go home, as she was on maximum life support and her condition continued to decline.
“If I was told she was going to die, I would have told you that she never wanted a tracheostomy,” her daughter said. “She told me she never wanted a tracheostomy. I didn’t know I had a choice to say no. I thought she was going to live if she received it.”
As Kruser, Clapp, and Arnold describe in their JAMA Viewpoint “Reconsidering the Language of Serious Illness,” the way clinicians choose to use words like “need” when discussing patient treatment options can be misleading for patients and families. In this case, the patient’s daughter chose to pursue a tracheostomy she knew her mother didn’t want because she felt she couldn’t say no, and didn’t understand her mother was likely to die with or without the tracheostomy. Situations like this emphasize the need to:
1. Put patient values and preferences first.
When clinicians use the word “need” to describe a treatment option, this may lead patients and surrogates to believe this option should be pursued. Clinicans may use this word when they judge one treatment option to be the right one. This projects our own value judgments onto the patient. Instead, we must ask patients and their loved ones about their values for medical care, such as what’s important to them, what their fears are, and what they hope for. We can then use this information to help determine what treatment options may best align with the patient’s values and preferences for medical care, rather than our own. It’s especially important that as we provide treatment options, we pair these with realistic descriptions of what a patient’s life might look like if these options are chosen. If we put a patient’s values and preferences for care at the forefront of medical decision-making, we can reduce the risk the terminology we use to describe treatment options may mislead the patient or surrogate.
2. Actively build trust with patients and their loved ones.
Patients and surrogates may not question clinician word choices and recommendations for treatment if they feel they don’t have the power to do so. One way to improve trust and the ability of patients and surrogates to ask questions is for clinicians to spend time talking with them not only about medical treatment, but caring for them as a person.
They also may not speak up because they think it’s not right to question a clinician. To reduce the risk of patients and surrogates feeling this way, clinicians can actively acknowledge that these concerns may exist and validate that their questions will be respected.
Using the word “need” to describe a treatment option may mislead patients and loved ones into believing this option should be pursued. Prioritizing patient values and preferences when describing treatment options and actively building trust with patients and surrogates may help reduce the risk of misleading them with our word choices.
This piece expresses the views solely of the author. It does not necessarily represent the views of any organization, including Johns Hopkins Medicine.