Treating the patients we cannot reach

asco-logoI had never met the man, but from a brief reading of the notes in his medical record, I knew that this was not going to be easy. Thirty years old with stage III kidney cancer, the notes showed a long history of missed appointments and late arrivals. I had been asked to talk to him about sperm banking and so started a 3-month journey of contact numbers not in service, relatives who hadn’t seen him for months, and oncology colleagues who were running out of patience.

He had seemed to form a bond with one of the nurses who cared for him before and after his nephrectomy. She offered herself as the liaison between the patient and the extended oncology care team, and we left it to her to keep trying to contact him. And try she did. She called him repeatedly. Receiving no response, she called his mother and his sister. No one had seen or heard from him.

One morning I tried calling him, and he answered! I could hear traffic noise in the background, and he sounded as if he was walking fast. He was on his way to the cancer center, he told me, and he would be there soon. He mentioned the intersection he had just passed, and it was within three blocks; I was heartened that he would attend the appointment with the medical oncologist this time. He never arrived.

Finally, the oncologist enters his final directive: he will not see the patient if and when he presents for care. There are others who are willing, but this particular oncologist is no longer prepared to make space in his busy clinics for a patient who has now missed multiple appointments. He sends an email to the team, notifying us of his decision and informing us of another oncologist who will take over the patient’s care, should he show up at some point in the future.

Cancer is never easy, and it is especially difficult for those whose lives are chaotic. Chaos flows from many sources: poverty, substance abuse, lack of or poor education, unstable or abusive relationships. Reading between the lines of the entries in his medical record I saw all of those contributors and one more: his fear and terror of the cancer that surgery did not control.

I think of this young man often. While he has missed a number of appointments with me, I treat those as “found time,” fully cognizant that I do not experience the same kind of pressure to see patients as many of my oncology colleagues. I find myself thinking about how afraid he must be each time he thinks about what lies ahead. I imagine that part of him must feel guilty about the times he has missed scheduled appointments. I suspect his mother and sister have asked him why we are constantly trying to find him. What is it about the situation that has him running scared or fighting so hard to avoid us?

I also think about the nurse who continues to try to reach him. I sense in her many entries into his record the frustration she feels. In some of them, there is the tone of apology at her inability to track him down, to find him, to persuade him to show up, this time or next time or anytime at all. I don’t for a moment think that any of us hold her responsible, but perhaps she blames herself for his absence. I send her an email, a simple paragraph acknowledging the time and effort she has put into trying to find him. I remind her that our patients ultimately are in charge of their destiny and that we can only try our best in caring and providing care, but there will always be those whom we cannot reach. I remind her while we are most often bothered by the very few we cannot reach, we need to remember the many patients we do reach, and the help and care we are able to provide them.

Her response, sent within a minute, is simple but heartfelt. My words turned her day around and made her feel less guilty. My encouragement to think about those she has helped reminded her of the good that comes from her efforts. And in turn, she has made me feel good for reaching out to her in her time of need. But somewhere there is still a young man whose cancer remains untreated, whose life continues to be chaotic, who remains out of our reach, and no words of encouragement or thanks can change that.

Anne Katz is a certified sexual counselor and a clinical nurse specialist at a large, regional cancer center in Canada who blogs at ASCO Connection, where this post originally appeared. She can be reached at her self-titled site, Dr. Anne Katz.

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