Anyone, regardless of their pre-existing physical or mental health issues, can get cancer. Sometimes patients receive a cancer diagnosis and immediately continue workup and treatment. They get tests, consults, treatment regimens, and follow-up visits as soon as they can. More times than not in my role, I am being asked to move up appointments, getting things done faster. Patients want to hit the disease head-on and do everything they can to get better as soon as possible. Others, especially those with anxiety issues, are paralyzed with the “what-ifs” and the fear of the unknown that awaits them. Noncompliance and missed appointments often are the unfortunate side effects that can occur when patients let fear take hold.
Charlotte was seen at a nearby hospital in May for chest pain. A CT scan done in their emergency department showed a 6.5-cm mass in her lung, and she was advised a biopsy was needed. I do not know if she tried to follow up at this outside institution, but it took until the first week of July for Charlotte to call our same-day appointment line and be directed to my phone. After hearing about Charlotte’s situation, I asked if she was able to come in the next day to meet with Patti, our thoracic surgery physician assistant, to be evaluated. Charlotte became agitated and declined the appointment because she was “not letting anyone cut her.” I realized then that she had some extreme anxieties that would be a barrier to her care. After a long conversation, and letting her direct the topics where she needed them to go, I was able to explain that Patti would just look at her images and discuss with her all the different options for care. With assurance that her visit with Patti would be a conversation only, Charlotte agreed to the appointment.
At the appointment, Patti arranged for Interventional Pulmonology to see Charlotte the same day, and a bronchoscopy was scheduled. Although the bronchoscopy was rescheduled twice, Charlotte finally had her biopsy at the end of July. Unfortunately, Charlotte was diagnosed with large cell neuroendocrine cancer, a fairly aggressive form of non–small cell lung cancer. I spoke with Charlotte after she was given her diagnosis and scheduled her PET scan, MRI, and appointments with both a medical and a radiation oncologist. She asked to postpone these appointments, because she said “it was too much to do in 1 week.” After again reassuring her that the doctors would just be talking to her at these appointments, and she would not be getting any treatments or procedures, she consented to coming in the following week. Charlotte did not show for her PET scan. She called me the next day, stating that she forgot she had this appointment, but then stated she didn’t have transportation. I rescheduled all the appointments to the next week, but when I called her back to confirm, she declined. She stated it was too much, too soon. We rescheduled the PET scan and MRI for the following week, and the oncologist for the last week of August. I checked to see if she had her scans and noticed she rescheduled her MRI again. I was afraid I was missing something, so I called to assess. When I called her to discuss the MRI, she said that she has had multiple MRIs in the past and has some mild claustrophobia. I asked her if she would take a mild sedative to help get through the MRI, but she declined. Charlotte indicated she would call her internist personally if she decided to use a sedative. I assessed her need for transportation. She stated her son had recently moved back home and was insisting on taking her to all her appointments.
Once Charlotte met with the medical oncologist, she was told she had widely metastatic lung cancer. She would need to start systemic chemotherapy as soon as possible due to the aggressive nature of her cancer. At her visit, we learned that she also had untreated hepatitis C and used street methadone for chronic pain. Realizing this would put a barrier on her oncology care, I was asked to schedule an urgent appointment with Hepatology. The medical oncologist also asked for an expedited MRI of the abdomen and to move up the MRI of the head. I arranged these appointments within 2 days. Charlotte and I spoke at length regarding the importance of attending all her appointments. I continued to offer support, encouragement, and education. Thankfully, she complied. Additionally, I offered our cancer counseling services, but Charlotte declined, saying she already had a therapist.
Charlotte had her MRIs and saw the hepatologist. Unfortunately, that night Charlotte was delivered another blow. She had more than 20 brain lesions and needed urgent whole brain radiation (WBR). I needed to convince Charlotte to come in the next day to meet with the radiation oncologist and have a simulation. As soon as I mentioned the simulation, she became agitated and declined to come in at all. I encouraged her to bring family to this visit. She repeatedly spoke about her son who was able to drive her to her appointments, but then she would show up in clinic without him. We discussed the importance of having her family there to listen to the doctors and ask questions that you sometimes don’t think of. We talked about how confusing her care was becoming, and how difficult it might be to do it alone. She agreed to bring her son to an appointment with radiation the next day to just talk. My hope was that if her family was there, they would help convince her to get the simulation that day instead of “one day next week,” thus prolonging treatment.
I met with Charlotte, her son, and her boyfriend at her radiation oncology appointment. I asked for her son’s number in case I couldn’t get in touch with Charlotte, and I also asked permission to speak to her son about her appointments. Charlotte grudgingly gave me her permission. She completed her simulation for radiation that day and would start WBR the following week.
The next week her hepatology team reached out to me. Charlotte did not show for her return visit. I called and spoke with Charlotte, who claimed she didn’t know about the appointment. I rescheduled the appointment right after one of her radiation treatments, and I arranged for a staff member to escort her from Radiation to her appointment. She was able to start her hepatitis C regimen shortly after. Charlotte has been following up with Hepatology without help since. After finishing her WBR, without missing 1 radiation treatment, Charlotte disappeared for a couple of weeks. She did not come for her scheduled return visit with Medical Oncology, and I was asked to contact her. When I reached out to her, she said it was a really bad time to talk. You could hear the emotional distress in her voice. She ruminated on many issues upsetting her, but she was mostly focused on her hair falling out. I offered to contact her son to confirm further appointments. She said no, and insisted that she would call us. I called every morning and afternoon, leaving messages asking her to call me. She finally made it through her first cycle of chemotherapy and has a set schedule. Charlotte now knows what to expect, and I’m hopeful she will follow through with her treatment.
How much have Charlotte’s psychological barriers hurt her physical state? Was she widely metastatic when she had her first CT scan in May of this year? Probably. Did her delay in follow-up from the start hurt her prognosis? I can’t say. But the thing that makes me not want to give up on Charlotte is that she keeps calling back to reschedule her appointments. It’s as if she has a mental block about coming to a new treatment appointment. It’s like she can’t operate on our timetables, so she “forgets” about her appointment but will remember after the fact. She reschedules, but rarely for the next available appointment. She requires more time to process what her doctors and nurses have advised. As healthcare providers, we are programmed to provide care efficiently to ensure the best outcome, but what if our timeline is not in step with that of our patients? If I did not support Charlotte through continual education and rescheduling of appointments, would she have received oncology care at all? How many providers would have labeled Charlotte as noncompliant? As a nurse navigator, it is important to remember that delivering patient-centered care sometimes necessitates altering the pace of that care, working to understand our patients’ psychosocial needs to ensure they are mentally ready to address their medical concerns.