Takeaway
When prior notes document that a patient doesn’t “want” a specific intervention, elicit the patient’s desired outcome and acceptable trade-offs. Then determine whether “I don’t want X” is absolute or conditional and align the care plan accordingly.
Lifelong Learning in Clinical Excellence | October 13, 2025 | 2 min read
By Ambereen Mehta, MD, MPH, Johns Hopkins Medicine, Suzana Makowski, MD, University of Massachusetts, & Farrah Daly, MD, EvenBeam Neuropalliative Care
A person with ALS was referred to the specialty palliative care clinic of one of the authors. The patient had already seen two independent ALS physicians who had documented that the patient “Would not want a feeding tube” and noted that “Artificial nutrition was not desired.” They referred the patient to a palliative care specialist with the implication that the patient was ready to discuss end-of-life wishes. However, when discussing future goals and hopes in the context of illness, the patient shared they were striving to live as long as possible. “As long as my brain works, I want to stay alive,” they said.
Surprised by this reply and suspecting a miscommunication, the palliative care specialist asked the patient about their prior conversations with other healthcare professionals about feeding tubes. The patient said, “People keep asking ‘Do I want that?’ No, I don’t want a tube in my stomach. Of course, I don’t want that. But I’ll do it if I must. I’ll do it when I have no other options left.”
Tips for clinicians when asking patients what they want:
1. First, ask yourself, “Do I understand what matters most to the patient?”
If the answer is no, explore the patient’s values. For example, you could ask say, “Most people with this illness will face certain decisions about treatments. Before we discuss those, are you comfortable sharing what you’re hoping for / are worried about / is most important to you)?” Note: The word want may be useful here to explore a patient’s deeper desires.
2. Next, understand the patient’s priorities.
Priorities shift as they are influenced by external influences. Avoid presenting treatments as option A or B. Instead, consider those that align closest to the patient’s values.
3. Last, acknowledge the emotional complexity of these decisions.
Consider the life the patient might have wanted may not be possible, but the life they can achieve with treatments may still be consistent with their values.
Things to consider:
1. The impact of language.
Effective communication requires attention to the language we use. Language translates to action, both intentional and unintentional, so we must ask ourselves whether we’re telling our patients, and ourselves, the correct messages that translate to intended consequences.
2. Values and preferences are two different things.
Generally, a patient’s values are constant because they’re related to the person’s core self. Preferences change as they are impacted by experiences. It’s crucial to explore both.
2. Preventing misunderstandings.
In this patient encounter, goals of care/advance care planning discussions were attempted at multiple stages; however, word choices led to a life-impacting misunderstanding. Additionally, misunderstandings can arise if clinicians skip exploring patients’ values and rush into asking about preferences. Prevent misunderstandings by double-checking, confirming understanding, clarifying expectations, and with attention to language.
Our patient, unfortunately, missed the opportunity to have a feeding tube placed that resulted in care misaligned with their values. Words matter and convey important sentiments crucial to complex medical decision-making, which is why it’s necessary for clinicians to consider each word carefully.
This piece was written for CLOSLER based on the authors’ publication in PubMed: Using the Word Want in Health Care May Leave Patients Wanting – PubMed
This piece expresses the views solely of the author. It does not necessarily represent the views of any organization, including Johns Hopkins Medicine.