In my almost 30 years as a nurse practitioner and more than 18 years in breast oncology, I have never been more challenged by a patient situation. I do consider myself a good listener and a clinician who can balance life and work to avoid compassion fatigue and burnout. But after three weeks of 10 or more calls a day from the patient, her husband, or the congressional aides who became involved, I am truly out of solutions for this family.
The basic story began when a woman with bilateral breast cancer was referred to me by a colleague in the community, who suggested to the family that I could move mountains for them -- already, the expectation was very high. The patient is in a Medi-Cal HMO that will not give her authorization to leave the county system for treatment.
She decided to fight for an exemption, all the while seeking no treatment at all. Six months later, with the disease potentially spreading, she found herself desperate to seek care within my organization. Of course, though the hospital is willing to see her, I can find no physician from surgery to take her case. Hoping that she may need neoadjuvant chemotherapy, I was able to refer her to a medical oncologist willing to see her, but the opinion was to pursue surgery -- back to square one.
I have spoken to her primary care clinician, the HMO medical plan coordinator, and the plan's case manager. We all agree that suitable and reliable care is available to her, but her reluctance to follow through with appointments and her inability to be flexible with the given providers has made it difficult.
I do understand women wanting to be seen and treated in a comprehensive cancer center, and I do believe that all patients deserve some autonomy in selecting physicians, but I find myself unable to breech her system or convince anyone to let her seek care outside of the network, even if just for the surgical piece. Having never met the patient in person, I cannot assess her from a clinical standpoint. When her husband calls to say she is in "bad shape and is dying," it is hard to know how to proceed, except to urge him to hang up and call 911 or go to the nearest emergency department.
I think that, from time to time, the US healthcare system frustrates both the patient and the provider. I have been told by her spouse that she is permanently disabled from a previous back injury. This fact may make her eligible for Medicare, which may give her the leverage she needs to broaden her provider base. My main concern remains her untreated bilateral breast cancer and her incessant calls, for which I have no answers.
Has anyone experienced a similar situation? Are there any solutions I may have overlooked? I am wondering if there is a psychological component that needs to be explored, though I am not sure the patient would comply with such a referral.