I 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 any time 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.
Comments
Janet Sheenan
Jul, 07 2017 9:23 AM
In this short essay, I counted the words "I, me, my, myself" ("our, we"--referring to providers--not in team of patient and provider) 23 times! In the last two paragraphs Dr. Katz gives herself kudos for reaching out to a "nurse" who previously had a bond with the patient but was now also unable to reach the patient by phone directly or via family members.(I had to research Dr. Katz' title which is a PhD in Nursing--an oncology colleague with the American Academy of Nursing)
Dr. Katz writes: "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."
Dr. Katz and the oncologist who now refuses to see this patient He/she is too busy to deal with a patient who doesn't show up for appts.) need to understand that this patient is living in terror. This nurse with a doctorate and the oncologists need to understand that their number one job is caring for a very ill patient with deep problems that are causing him to be lost in follow-up.
Dr. Katz gives general reasons why patients in the past failed to follow up. She then attempts to "explain" this SPECIFIC patient with words such as "assume" "suspect" "imagine" without REALLY knowing WHY this particular patient isn't coming into his appointments. Then Dr. Katz states that they should think about all the people they DO help instead of the "few they cannot reach."
Dr. Katz needs to change the title of her essay into "Hey we try, but it's not OUR fault when a patient doesn't follow up. Look at all the good that we do with the rest of our patients. This isn't OUR fault."
Yes it IS Dr. Katz! Our colleagues in psychiatry face the same dilemma with patients with Borderline Personality Disorder. Patients with BPD can be difficult as they "no show" for appointments and have a GREAT problem with trust. There are psych providers who REFUSE to even see any patient with BPD as they are just "too hard to work with" just as the "busy oncologist" who refuses to "waste his time" with this 30 year old patient with kidney cancer.
John Donne wrote the following in the late 16th century:
“Any man's death diminishes me, because I am involved in mankind, and therefore never send to know for whom the bells tolls; it tolls for thee.”
Dr. Katz has seemed to have forgotten what our role of healthcare providers truly is: Caring for the PATIENT not the cancer. It is NOT about you..it's about this young man! Right now (for reasons you do NOT know) kidney cancer is NOT his priority...it's your priority and golly you sure did the best you could! You even made that nurse feel good. (ANOTHER assumption on Dr. Katz' part!)
Your team's job is getting the most specific diagnosis of exactly what type of cancer this 30 year old man has--so that your team can prescribe the most specific, targeted approach. HOWEVER your FIRST priority is HIS first priority--why is he not coming in? Each community has public health nurses, visiting nurses who go to a patient's home. Endocrinologists use these visiting nurses here at Kaiser for patients with newly diagnosed diabetes who require a rigid diet and need to learn how to obtain the appropriate sytinges or pre-filled auto injectors to inject insulin. But MOST important is to figure out the family environment and what barriers there are for reaching goals in diabetes such as keeping the A1C level at a pre-determined level. If a family eats white rice at every meal, you've got a REAL problem that needs to be addressed by the ENTIRE family not just the patient.
Dr. Katz, if you don't have RNs or NPs who can make family visits you are failing your patients. Until you can get to the REASON that this patient fails to keep appts, you are not providing good patient care. Every patient with chronic disease (and cancer is definitley a life long problem) needs conferences with the family looking for support systems and family dynamics.
In a world of increasing sub sub specialties, who ends up caring for the human being who happens to have kidney cancer? And if your team states that's NOT their problem...well you've all forgotten what health care is all about. Don't forget about HIM.
Anne Katz, PhD, RN, FAAN
Jul, 07 2017 9:46 AM
The comments reflect a fundamental misunderstanding of the role of this blog (and many others on ASCO Connection). These are reflections on practice and NOT case studies. Many details were left out and/or changed in my description of the situation to protect the anonymity of the patient, nurse and oncologist. Despite the assumption by Sheeran, I DO know what the issues are for this patient who is reluctant to attend for care - but stating these would potentially identify him and those involved in his care.
Sending someone to find him or observe his home environment is NOT the role of nurses, NPs or anyone else. Respecting his right to attend for care is part of a patient-centered approach that apparently is different from diabetes care at Kaiser as described. Considerable effort has gone into caring for HIM - repeated phone calls and out reach, contact with family members etc. The entire team has focused on trying to get him to attend for care for HIS sake and not ours - however ultimately we are oncology care providers and NOT bounty hunters. He is an adult who has self-determination and free will. It is also part of our responsibility to treat him as such.