By Theresa Brown is a hospice and oncology nurse that was diagnosed with stage 1 breast cancer in 2017. The experience showed her what it’s like to be on the other side of the nurse-patient relationship, but she was shocked at how poorly she was treated by the healthcare system even with all of her prior knowledge and experience. The ordeal led her to write a book titled, “Healing: When a Nurse Becomes a Patient,” which chronicles what she learned from her time in the hospital.
Brown said her cancer diagnosis was a wake-up call after years of priding herself on her strength.
“I never expected to become a patient,” she told TODAY. “People in healthcare believe we’re invulnerable to something really serious. Working with cancer patients, it was like: that’s who I take care of, that’s not who I am. So, when I became one, it knocked that whole idea of invulnerability down. Suddenly, I had to realize that wow, I’m actually human.”
She was initially struck by how the doctors failed to coordinate her care while she was still in shock. Nobody was there to manage her appointments or explain to her what she should do next. Brown described the experience as “DIY cancer.”
“I felt like: Why don’t they give out a sheet that says this is what you have and this is what the prognosis looks like? Nobody gave me anything in writing like that. Nobody ever said, ‘We’ve got this. This is the most common kind of breast cancer. We know how to treat this. You are going to be OK.’ That would have made it so much better able to tolerate things.”
Brown ended up benefiting from her experience as a nurse. She connected with a friend that works as a breast cancer surgeon, who recommended her current doctor, but she noted that most cancer patients don’t have this luxury.
But even with the extra help, Brown said there was still a lot of back and forth with the staff over whether she needed chemotherapy.
“This is a very vulnerable time for patients, so there needs to be a system in place that can always address what people need,” she said.
Small tasks like scheduling her next appointment became needlessly tedious and overly complicated.
“When I went to schedule a biopsy, the scheduler had left for the day and no one else was going to do it. The other receptionist said, ‘Oh, you just missed her’ and I became enraged. It was like a breaking of trust right in that moment and I felt like I worked really hard to have patients trust me.”
She realized that many providers don’t realize what their patients are going through. Small inconveniences like not being able to schedule an appointment or struggling to get a hold of the doctor can leave patients feeling demoralized and neglected.
“As practitioners, we also give out the message to patients to be passive and undemanding — and patients absorb it. Health care is like an assembly line, and not just one. There’s the breast cancer assembly line, the billing assembly line, and the let’s-get-people-in-and-out-of-here-as-quickly-as-possible assembly line.”
Brown added that patients often feel pressure to go along with the system and not cause problems because every delay has ripple effects that can bring the entire system grinding to a halt.
“There came a point when I realized, ‘I’m being an easy patient and it’s terrible. I feel like I’m not even a human being anymore.’ When I started to push back more and ask more questions, I realized that this is a very appropriate behavior. The system should not be so resistant to these very human needs to understand what’s going on with your body when you have a terrible diagnosis.”
She encourages patients to stand up for themselves while being sensitive to what’s going on with the staff.
“I would encourage every patient to ask questions. Don’t yell at people, be appropriate, but push back a little bit. We’ve enculturated patients with this idea that you have to be meek in order to get care, and you don’t.”
She would also like to see providers take the time to make their patients feel welcome and heard, especially when they are going through a painful diagnosis.
“Simply saying, ‘I am here for you. I care’ can really make a difference for the patient. That doesn’t mean every nurse and doctor has to come to work with 100% empathy all the time because I don’t think that’s possible. But try to see the category ‘patient’ as a much broader thing, as someone who’s a human being out there in the world. There’s a life they were part of — now this has become part of their life.”
