Lost to follow-up …

The phrase lost to follow-up is frequently used in medicine to describe patients who you can no longer locate, despite your best efforts. Sometimes this happens early in the course of treatment, for example a patient seen in an emergency room who comes in to have a wound repaired but never shows up for his or her suture removal. Sometimes it refers to patients with whom you may have had a long and successful relationship, but who may have moved or relocated and you are unable to find them again. I first came across this bit of doctor jargon back in 1987 when I was doing some research in the Tumor Registry at the University of Chicago, as part of my work with a general surgeon with a strong interested in colon cancer. I would sift through records looking for patients with specific types of colon cancer and then attempt to find out by phone (in the pre-Web days, mind you) whether or not they were still alive, and whether or not their disease had returned. Patients who could not be located were classified as lost to follow-up.

For some reason, I’ve felt (rightly or wrongly) that the phrase has always implied that it’s either the patient’s fault, or due to circumstances beyond one’s control. In no small part, I think that it is because as physicians, we are constantly reminded of the importance of following up on things. Every time I present a patient to an attending physician preceptor and review my assessment and plan, I always make sure to include follow-up plans, for example, “Timmy will return in 3 weeks for the start of his next cycle of chemotherapy,” or, “Jane will return in 3 months for a CT scan and labs.” We’re taught to be compulsive in following up on test that we order – after all, if you have a patient who you suspect has, say, worsening kidney function, and you send them off for some labs, if you don’t follow-up on the results in a timely manner and the patient suffers for it, you’re at fault. Fortunately, more and more automated systems are being put in place to help us rememeber to follow-up on the volumes of data that we sift through daily. Many of the phone calls that I get when I’m on call for the oncology service are from outside hospital laboratories calling to tell me about this critical lab value, or that test result. Follow-up extends to all of the patient calls that I get at night – with each call generating a string of e-mails to the patient’s primary fellow, primary nurse, primary attending, etcetera, to let them know to follow-up on the overnight event.

But what about following-up on people after the patient is well, or following up on families if the patient doesn’t survive? These first type of call is easy to make – albeit sometimes the families are surprised to hear from you and begin to worry that something is amiss. Often when I plan to go out of town, I’ll run through my list of patients and call people just to touch base and make sure that there are no problems lurking for the person covering for me. Talking to families who are no longer receiving regular treatment and who no longer have their child’s cancer diagnosis as the central focus of their life is different. The intensity of the conversations is gone, and at times I’ve felt that by calling I’ve only reminded the parent of a terrible time that they’re trying to forget. Many times, however, it’s like catching up for a few minutes with an old friend at a cocktail party :

“Oh, hey, how are you. Yes, it has been a long time, hasn’t it. I’m glad to hear that the kids are OK. Oh, really? You’re going there on vacation – well that sounds just wonderful. Ok – super – let’s chat again soon. Sure, it’s good to see you too. Take care. Bye.”

And so it goes. But what about the second type of call – the one you may want to make to a family of a patient who didn’t survive their disease. How much of these types of calls serve the needs of the family? Are these calls serving our (my) own needs? I think about this a lot, probably more than I should or need to. I think that the reason it gets so much thought is because I’m not sure how how to resolve the question of who is the beneficiary of these calls. Me, them or both. For some reason, yesterday I had a chance to revisit this point. Part of making the Ride For Them website has involved contacting the parents of the children who I’ve helped care for who have not survived their cancer. One of the families I never really lost touch with – we talk regularly – and so it was not hard to approach them about riding on behalf of their child. A mother of a patient I haven’t talked to in a long time was always so approachable and easygoing – even in the time around and after her son’s death – that I instinctively knew that calling her would not be awkward in the least. There’s one family whose daughter I cared for for the 8 months between the time of her diagnosis with leukemia and her death last summer. We have actually not spoken at all since the funeral, but for some reason that felt like it was the right arrangement, and so my instincts have told me to leave them be.

But in the back of my mind there has been one family – and mainly the mother – of a little girl who died about 18 months ago – that I’ve been thinking about a lot as I write this. I met this little girl after she came to us from another hospital for evaluation of a very unusual brainstem tumor. The tumor was situated in a place that was inaccessible by surgery, and given her young age and the location of the tumor, radiation therapy would have caused nearly as many (if not more) problems then help. We used a very, very aggressive chemotherapy regimen and had a little glimmer of hope after the first cycle or so, and then the tumor began to grow again and switch to pallaitive chemotherapy for a little while before she ultimately died. The patient’s mother and I had the type of relationship that tends to grow as a result of the mutual respect that forms after butting heads for a bit, which is what happened to us at the start of the child’s therapy. However, I find that these types of interpersonal relationships tend to be even stronger than the typical therapeutic alliance because by pushing on each other a little you get to know the other person that much more. She and I couldn’t have been more different – we had entirely different backgrounds, geographies, and experiences – but again, it was these differences that drew me in.

My experience with this family – their daughter’s death was the first that I had experienced as an oncology fellow – had a tremendous impact on me. Because it was the first, it was the one that I remember the most. Beyond the fact that I was so very fond of this little girl and her family, everything about this child’s time as a patient was that much more poignent for me. I remember so much of our clinic visits together, of the conversations I had with her family, and the last few days of her life. Her sister, being about six or seven years old a the time, told her mother out loud at the funeral that she was upset with me because I let her sister die. And even though I am perfectly, rationally capable of understanding exactly why a seven year old would say that, and even though I probably would’ve said the same thing if the roles were reversed, things like that stick in your brain for a very long time.

And so it came to pass that a year had elapsed since I had talked to this little girl’s mother – and as I’m sure you can imagine, the longer the interval, the more awkward the phone call and the less likely one is to make it. But because I felt so strongly about riding in this little girl’s memory in the Pan-Mass Challenge this year, I called. And wouldn’t you know it, the phone number was disconnected. My heart sank. Lost to follow-up. I couldn’t imagine that it would be possible. I dug through my old papers and managed to find a cell phone number and amazingly got through to a voicemail and left a message, not knowing if it would ever be heard or ever returned even if it was heard. You can only imagine how happy I was to have the phone ring 20 minuts later, and how wonderful it felt to hear a familiar voice. We talked for quite a while and if things go well may even see each other at an upcoming remembrance service next month where the families of children who have died gather once a year to reflect and re-connect. I hope that will be the case. I think that at the end of the conversation we both came to realize how nice it was to stay connected, despite the fact that on the surface it may seem odd or unusual to maintain these relationships beyond the death of the patient.

Being in my job, I make no illusions that I have any control over the outcome of a child’s disease. I truly believe that I am more a witness to events that will unfold as they are going to unfold. This allows me to always have hope, because I am comfortable facing that vast pool of unknown. I accept the fact that I have control over a very small part of the overall treatment program. I don’t minimize the importance of it, but I also don’t inflate it into something grandiose. Believe me – the parents and the children do a lot more of the heavy lifting in treating their disease then I do. But I can say that it is nice, once in a while, to be able to prevent someone from being lost to follow-up and still be able to be there for them as a friendly voice, or friendly ear, and to be able to hear their thoughts or feelings, to share their ups and downs, and to let them know that we still care.