Two different cancer screening tests came back positive. The patient needed additional testing to see if they had these cancers, but the threat was real and could be life changing. As the months went on, the referrals I had put in for the follow up tests came back – “unable to reach patient,” “failed scheduling effort,” and finally “referral canceled as unable to reach patient, reorder if still clinically indicated.” The patient missed their follow up appointments with me. I saw, however, the ongoing social work notes in the chart. Half of these notes stated they couldn’t reach the patient and half suggested contact. Perhaps it made sense that this patient wasn’t attending to their cancer diagnosis/rule out follow up appointments. This patient had big fish to fry without cancer. They were struggling with drug addiction, didn’t have secure housing, and weren’t sure where they’d get their next meal. The electronic chart, filled with short notes attempting objectivity written in the same font used in 1980s faxes, told a story. The story was both an epic and a tragedy.
This patient was lost to follow up. Would we ever find out if they had cancer? Did it matter? Would they die before medicine could help them? Was medicine really what they needed? As I watched the story unfold, Maslow’s Hierarchy of Needs surfaced in my mind. This patient’s basic needs weren’t met – food, safety, and a place to stay. Cancer was so high up the pyramid of needs it seemed silly to discuss. Though, was it really that high up the pyramid? I know what cancer can do.
Health is multifactorial. Only one piece of health is access to quality healthcare. This patient was focusing on several nonhealthcare pieces of health – safety and security of the physical body. Perhaps they were also focusing on finding their next meal. Perhaps the recreational drugs they used were treating demons of a past filled with trauma. This patient was part of a healthcare system with robust social services to help with social problems like housing and food insecurity. Interestingly, the social services this patient could access are exceedingly rare in the US. Most health systems don’t provide these services and most insurances don’t cover them.
I hoped the patient’s basic needs would be met. I hoped that when those needs were met, they’d return to clinic so we could start the cancer investigation process. I hoped it wouldn’t be too late. Even as a physician I don’t get to write the story of other people’s lives. As the story in the chart unfolded, I was grateful that the patient was receiving social services. I was frustrated that in most other US healthcare systems a different patient in the same situation would receive no help of any kind.
“Lost to follow up” is the phrase we use for patients who disappear from healthcare. It’s a term that provides a label, but it doesn’t explain where these patients go and why they disappear. The label can have negative connotations because it’s easy to be frustrated when patients don’t want to take our (their doctors’) advice and follow our carefully designed plans. It’s easy to forget our patients (just like us) are products of the social determinants of health. It’s easy to forget (just like us) they have lives filled with complex situations regardless of their use of healthcare.
I’ve found that it’s worth stepping back and trying to see why patients decide to become lost to follow up. When I do this, I often discover that they aren’t lost at all. Rather, they are fighting for the most important things in their lives at that time. And the important things they see are usually different than the important things I see. Since patients are the experts in their own lives, they are often right about what’s most important. Frequently nonmedical things have a greater influence on patients’ decisions than their health needs as dictated by their doctor.
As the alerts came to my inbox for missed tests, I thought about the patient the first (and only) time I met them. They had answered all my questions thoroughly and without hesitation. I wondered if I’d see them again. I hoped they returned to clinic before anything devastating related to their maybe cancers happened. I cleared the alerts. The patient would write their own story; I’d be here if they invited me to partake in another chapter of it. Even tragedies sometimes have plot twists and happy endings. I always (and unwaveringly) root for happy endings no matter how stormy the story becomes.
References:
Wikipedia on Maslow’s Hierarchy of Needs: https://en.wikipedia.org/wiki/Maslow%27s_hierarchy_of_needs
Article on the importance of the different determinants of health: https://pubmed.ncbi.nlm.nih.gov/26526164/
HHS overview of the social determinants of health: https://health.gov/healthypeople/priority-areas/social-determinants-health
WHO overview on the determinants of health: https://www.who.int/news-room/questions-and-answers/item/determinants-of-health