Avoid Hiding Behind the Science
The other day as I walked down the hem/onc unit hallway "off-duty" so to speak, to pick up some papers, I was stopped by a woman I’d first met a year and half earlier that I had not seen since then. She insisted that I come see her husband, who had just finished receiving his second autologous transplant and was apparently doing quite well.
Fellowship provides a unique situation for the doctor-in-training. You are not exactly "in the trenches" as you were as an intern or resident. But sometimes you find yourself there anyway, which can be even more intense, as you are expected to have answers and make things happen. In her husband’s case, it had been exceedingly difficult.
The patient had developed a large plasmacytoma (mass of multiple myeloma) in his abdomen that was causing pancreatitis. As stoic as he was, he didn’t even mention the pain, yet he could not stand still for even a moment to finish a sentence. His multiple myeloma had run rampant, which seemed to be a consequence of getting lost in the midst of switching doctors and perhaps not ever truly understanding his disease and its treatment.
The next morning while we were arranging for a central indwelling catheter to be placed for infusion chemotherapy, both of his legs became numb and he had the dreaded saddle anesthesia--high dose steroids and radiation eventually took care of the spinal cord impingement. The patient's family was not understanding this and understandably so. This stoic man could no longer walk. His daughter who was a physician berated me and our staff all the way up to the administrative level. He had a large caring family, all who were equally hostile and unapologetic. The residency house staff became distraught and I thought it was appropriate to take on the responsibility, as one thing after another seemed to go wrong for him. It was not the right time or place to mention to the patient that perhaps his stoicism and de-emphasizing important symptoms at home were responsible for the mounting catastrophes. Of course, the family was aware of his reluctance to admit to pain or other symptoms, but may not have been aware of the detrimental consequences of doing so in a fast-moving disease like multiple myeloma. Instead, I tried to understand their frustrations and I really didn’t dare say very much at all. I dreaded the situation every time I had to encounter it.
During residency, I used to always laugh at my high marks for “professionalism.” It was as if to say, “Well, he may not really be that smart, but at least he doesn’t say anything stupid." But since then, I’ve learned that professionalism makes all the difference in patient care. There are only a finite number of things we have control over, medically. As this somewhat difficult patient and family situation illustrates, it is hard to not get bogged down in the dynamics. It takes work to signal to the family that you can tolerate the frustrations-even when all you really want to do is walk away. That is doctoring, and that is what patients and families remember, strikingly so. Veteran docs know this through and through. As the younger generation, we must remember that the real doctoring comes when you have nothing to give but yourself in an otherwise frustrating situation. It is easy to give a drug or a treatment and promise something else. It’s more important that we don’t hide behind our science and technology, and we learn to tolerate these frustrating, humiliating, and extremely difficult no-win situations. If we hadn’t, the patient's wife would've walked right on by.
Targeted agents have brought science to the forefront of oncology patient care at an exhilarating pace. At their very best, these drugs turn once universally fatal diseases into chronic conditions and at the very worst, their toxicity can add to the patient’s burden. Most agents fall somewhere in between. This complicated interplay between disease biology and treatment pharmacology is a fascinating dance where, in the case of targeted agents, it’s usually the disease that proves to be a clumsy partner.
Multiple myeloma is the poster child for targeted biologic therapy. Knowledge of its genetics and multiple generations of new efficacious drugs have made this disease more variegated and potentially manageable. It can resemble a chronic condition rather than a rapidly fatal illness. Even still, as this story illustrates, patients’ understanding of their disease, adherence, and cultural factors all contribute to the overall success or failure of a given treatment. This patient had ready access to all of the invaluable armamentarium of multiple myeloma drugs, yet experienced the complications of untreated multiple myeloma as a consequence of not getting them. These drugs make the disease trajectory more variable and encouragingly more salutary; however, as they offer great hope they can often bring great defeat. That may have been the reason for his family’s frustration at that time.
What are the factors that allow patients to take full advantage of their medical care? Although we can invent new drugs, we cannot satisfactorily answer this question. Perhaps his complications from missing months of therapy would have been avoided with an understanding of how to communicate the intricacies of his disease and negotiate with a strong patriarchal immigrant family. Across nations--even those with socialized health care systems--patients who have money live longer. I wonder what it is that they are buying that is helping them live longer. Perhaps it’s just a more accurate understanding of their diseases.
Either way, as treatments become more complicated, it is increasingly important to stand by patients and their families as they endure frustrating realities. New drugs may lift some of the unpleasant realities of disease, even temporarily, only to give way to an unprepared defeat, as in this case. The moment when you realize you have nothing to give but yourself, it can feel raw and you may feel defeated. However, if you manage the frustration and resist the temptation to say something inappropriate, it is remembered for years and years by the patients and families who were there. I cannot quantify how this makes a difference, but I know it does. This act of not saying or doing something ignorant or foolish seems like the simplest thing; however, it is neither simple nor simply taught. I just now know it is important.
Disclosures:
Daniel McFarland is a clinical fellow in hematology and medical oncology at Mount Sinai Medical Center in New York City and a member of the American Psychosocial Oncology Society. He is dually trained in internal medicine and psychiatry. As part of the American Psychosocial Oncology Society, Dr. McFarland is currently collaborating with Dr. Jimmie Holland at Memorial Sloan Kettering Cancer Center in an effort to bring psychosocial issues to the attention of oncologists as they treat patients in the new era of personalized medicine. The views expressed are his own.
