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Going where your patients live
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Similar to those at other academic institutions, our inpatient hematology/oncology service seems to grow in size with each passing month. More patients than ever are admitted with complex diagnoses and new indications for therapy. Teams of overwhelmed and hard-working nurses and physicians struggle to just keep on top of the day’s work. Duty hour restrictions, while implemented with good intent, tend to make things more complicated by introducing additional handoffs and requiring more time for new teams coming on shift to learn and understand the major medical problems of the hospitalized patients.
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With these developments, it is hard for the team to spend much time at the bedside of each patient during morning rounds. We have devised various workarounds for this — medical students, interns, residents and fellows will go back to the bedside individually during down moments during the day for longer discussion. And the unsung nurses, as a colleague was recently discussing with me, keep the whole operation afloat through their continuity and constant presence.
So it is hard for us then, to wrestle with situations in which patients make decisions that we cannot easily understand. We find it hard enough to treat disease biology, so when patients advocate for care plans that we feel don’t make sense, we don’t know how to react. I can think of at least three patients I came to know when I was recently on service who presented such dilemmas.
Asking why?
One patient was a 31-year-old prisoner with HIV who was hospitalized for treatment of stage IV diffuse large-cell lymphoma with the hyper-CVAD regimen. He had become increasingly distrustful of his two prisons — the one traditional, and the other within the walls of his hospital room — and grew paranoid that his chemotherapy was causing him harm (which, in fact, it was). He didn’t want his temperature checked, and one time his infusion became mysteriously disconnected in the middle of the night. We’re pretty sure he did it, though we didn’t have proof. Didn’t he know how important it was for us to monitor him carefully? And couldn’t he understand that we were trying to save his life?
Another was a 52-year-old survivor of a previous malignancy, now with treatment-related AML. Refractory to four previous lines of therapy, she was admitted in significant respiratory distress from either infectious or leukemic infiltrates, or perhaps both. Ninety percent of her circulating white blood cells were blasts. And despite the odds of cure (somewhere between infinitesimal and zero) she wanted to press on, full code, with another round of therapy. Her father was a minister. Didn’t she understand that her chances of recovery were slim?
A third was a 22-year-old man with an aggressive and recurrent hepatosplenic T-cell lymphoma who also came for hyper-CVAD therapy. Away from his home environment, he had trouble being in a place where he couldn’t play basketball, hang with his friends and control his own destiny. He wanted to leave against medical advice in the middle of treatment. Nobody understood him, he thought. Each dire warning that the intern and resident provided about the life-threatening consequences of leaving early were, in his opinion, just designed to manipulate him so he would stay against his will. Didn’t he get it? Why was he acting like such … a teenager?
Knowing a patient
I am reminded of the title of a JAMA article I came across during recent research that included the phrase “You got to go where he lives.” One of the protagonists in the article commented: “Well, you know, you got to find out the identity of a person to even get to know them … And he’s got to open up, and tell you these things. Because the more you know about this person, his family, then that’ll make you know more about you.”
True to that depiction, this approach is what ultimately disarmed the 22-year-old, convincing him to stay. One afternoon — an afternoon that was unusually uncluttered for me — I sat down in the room with the young man and invited him to talk. We discussed his life, his friends, basketball, Lance Armstrong and yellow wristbands. We talked about hope, and we talked about being scared. As we had this conversation, I couldn’t help but reflect and feel how terrified I would be if I was lying in that bed, among unfamiliar people, asked to undergo difficult treatment, and worried for my life.
Ironically, we didn’t actually talk that afternoon about his actual cancer, or why he needed treatment, or what would happen if he left the hospital early. The discussion we had — as an advisor later described it, “entering through the back door” — was an opportunity for us to interact on the same level, and enough for him to feel that he had his dignity back. I went where he lived.
I’m not an expert in psychosocial care. As one discussant lamented at a recent ASH education session, we all think we’re good at providing psychosocial care, but few of us actually are. I know that it will be years of practice before I can even think of putting myself in the “good” category. But I worry about how the ongoing changes in the environment of inpatient oncology will impact the ability of any of us to deliver good psychosocial care. We will need to think creatively about how to restructure the way we conduct business — and what additional resources we will require — so we can go where our patients live.
William Wood, MD, is a second year Hematology/Oncology Fellow at the University of North Carolina, Chapel Hill and is a HemOnc Today Editorial Board member.