I talk with patients who have metastatic breast cancer about their hopes and worries at every visit. This allows me to give better, whole-person care.
I’m an RN and distinguished service professor of breast cancer, as well as a breast cancer survivor. I’d like to share a few things I’ve learned from my career thus far.
Instead of focusing only on my patients’ disease, I work to support them in self-advocacy for the most effective treatment and care. We work together to establish realistic goals of care instead of just hoping for a miracle. Twenty-three percent of patients with advanced solid organ tumors die in an ICU on a ventilator because there was no thoughtful honest discussion between the doctor and patient. Some physicians were taught to treat the disease rather than take care of the patient.
Here are five questions I ask my patients with metastatic breast cancer that help me to take care of my patients:
1. How much do you know about your disease? It’s not unusual for a patient to tell me that she has breast cancer, lung cancer, and bone cancer and has been looking on the internet for treatment for bone and lung cancer. I need her to understand her disease: breast cancer cells that spread to her lungs and bones.
2. How much do you want to know about your disease? Not everyone wants to know everything early on.
3. What are you hoping for today?
4. What are you most worried about right now?
5. What ‘s bringing you joy right now?
The last three questions I ask EVERY TIME I meet with patients because these answers will change over time. I need to move my patients through phases of hope: for example, hoping for a miracle for a few weeks, then hoping for a long life with quality of life preserved, and then treating the disease as a chronic illness when possible. After that phase, sometimes a serious and very honest discussion is needed to talk about the reality of their life being much shorter than hoped for and changing the goal heavily to preserving quality of life, fulfilling life goals when possible, and observing special milestones coming up in the future. Finally, the last hope is to experience a good and peaceful death.
I learned to stop saying, “I’m so sorry you won’t be here to raise your children, or see your daughter get married someday, or take that trip to Europe.” This does no one any good. I want to instead take pride in helping my patient transition through each phase of hope and give patient centered care.
This piece expresses the views solely of the author. It does not necessarily represent the views of any organization, including Johns Hopkins Medicine.