Lost to follow-up. This is how we describe patients who don’t return for further care. A woman in her forties hasn’t had a mammogram in five years because her first one was normal. A patient doesn’t return for her biopsy results because she has three grandchildren to watch while their parents are at work. Most often these women continue to lead healthy, normal lives and are unaffected by the lab results, images and pathology reports lying neglected in their charts. However, sometimes these women return to see us in much worse condition, brought in completely unresponsive by ambulance or wheeled in by a family member because they are too weak to walk. We pour through their charts to see how they got to this state and find those bad test results that have been ignored.
I was recently paged from the emergency department with a request for a gynecology consult. A middle age woman with a long history of heavy menstrual bleeding was brought in by ambulance and was actively hemorrhaging. When my team went to evaluate her, we found a pale, diaphoretic woman slumped over in her hospital gown, the sheets beneath her stained red. She felt dizzy and light-headed and we noted that her heart rate was very high, a sign that she had likely lost a significant amount of blood. After stabilizing her with fluids and a blood transfusion, we were able to analyze her medical records for clues as to her condition.
We found that three years ago she had been admitted in a similar condition and her doctors found an abnormal growth in her uterus that gave them cause for concern of cancer. The appropriate treatment is an immediate hysterectomy, a complete removal of the uterus, so we were shocked that she had gone this long without having surgery. We dug further and saw note after note mirroring the thoughts racing through our heads. “Patient was counseled extensively on the risks of cancer and scheduled for surgery in the spring.” “Patient did not show up for surgery today. Called her home and nobody answered. Will attempt to contact patient again.” Multiple doctors had attempted to arrange for our patient to be treated, and many times she had been lost to follow up.
When we confronted her, she admitted that she had missed several appointments. She was unable to take time off work. She had to take her children to sports practice. She wasn’t feeling well. Ultimately, she was scared. The senior resident sat on her bed, held her hand, and addressed her firmly. “We understand you’re scared, but we don’t know how far that abnormal growth has progressed and we need to find out. Our job is to do what’s best for you, and right now that means surgery to take your uterus out.”
We scheduled her for surgery, and as I walked her into the operating room, I saw the sterile metal table, the bright lights, the masks and gowns - a sight that has now become familiar and comforting to me - induce fear in her eyes. The hysterectomy was uncomplicated and the pathologist confirmed our concern. She had uterine cancer. Fortunately, it had not progressed beyond the walls of the uterus, and in removing her uterus we had treated her. This is the outcome we hope for, but not every patient is as lucky.
So, how do we prevent our patients from becoming lost, from falling through the cracks? The benefits of timely follow-up accrue to patients, hospital systems, and the community as a whole, while delays in proper diagnosis and treatment lead to increased medical expenses and worse patient outcomes. The solution to this problem will require a collaborative effort from hospitals, physicians, patients, and the community. Hospitals need more rigorous protocols to ensure patients can get appointments with their primary doctors, consulting physicians and imaging facilities. We as physicians can help by better counseling and educating our patients on what we are doing, why we are doing it, and what the potential outcomes will be. Asking patients to summarize our conversation can ensure that language barriers or medical jargon do not interfere with communication. Patients in turn must advocate for themselves and take an active role in maintaining their health. Finally, community programs providing childcare and support services will help patients afford the time to go to the doctor and help relieve anxiety and fear of test results and treatment. By ensuring that patients return for appropriate follow up care, we will significantly decrease medical expenses. More importantly, we will improve the overall health of our patients, which means that employers will have less health related absence in the workforce and families will suffer less the inevitable hardship that comes from the illness or death of a family member. When a patient is lost to follow up, we all lose. But, by working together, we can win this battle.