In Charles M. Schulz’s “It’s the Great Pumpkin, Charlie Brown,” the Peanuts gang goes trick or treating door to door. While everyone else gets candy, chewing gum, and chocolate bars, Charlie Brown just gets a bag of rocks. Everyone got treats except Charlie Brown, who only got tricks. Sometimes it seems that my patients are trick or treating, too. Sadly, the tricks come way too often.
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Linus tried to avoid tricks by staking out a sincere pumpkin patch in the hope that the Great Pumpkin would rise and deliver him candy and toys. Alas, our patients sometimes sincerely believe things like alkalinization, naturopathy, and antineoplastons will deliver the treats they need to cure their cancer. They will be similarly disappointed.
Most patients depend on us to skew the treat to trick ratio favorably. They trust us to know what to recommend to lengthen life and reduce suffering. Their faith is both a profound privilege and a daunting responsibility.
My patient was hospitalized with hypercalcemia, the latest complication deriving from a decade of progressive multiple myeloma. He was on his 11th line of therapy complicated by at least a grade 3 neuropathy resulting in an unstable gait, chronic pain requiring opioid analgesia, two hospitalizations in the last year for severe infections, and venous thromboembolism on anticoagulation, all resulting in an ECOG performance status no better than a 2. He stabilized and then we needed to talk about next steps.
A clinical trial would be ideal, but he would be excluded from any that we have open and travel isn’t really an option for him. I could choose to treat him with selinexor. It is approved by the Food and Drug Administration and has about a one-in-four chance of producing a short remission in a population of patients that would not include my patient. It also has a three-in-four chance of significant side effects. I could also create a combination regimen with drugs that he has already been exposed to, knowing that response is unlikely and side effects are certain.
Dr. Matt Kalaycio
This situation is not unique; in fact it is an all too frequent occurrence. The easiest path forward for me would be to recommend treatment. The patient expects treatment and would readily consent to whatever regimen I proposed. He would bear whatever side effects resulted as an expected consequence of therapy. On the surface, this easy path appears to be the proverbial “treat.” But really, further treatment is the “trick” because it is not known to prolong life and would certainly add side effects. The problem, of course, is knowing both when treats become tricks and how to let patients know this, too.
No one knows exactly when treats become tricks, least of all me. Every month I get a report updating me on the status of a former patient being treated elsewhere. This is someone who I thought had no more treatment options. I am humbled every time a colleague, or fellow, recommends a treatment I had never considered. I am not perfect; I do the best I can. My recommendation might be wrong.
Yet I have watched my patient steadily deteriorate and cognitively decline no matter what treatment I employed, whether or not the monoclonal spike decreased. There is no evidence that treatment under such circumstances benefits the patient at all. Moreover, I have sat through many morbidity and mortality conferences where the conclusion was that we should have consulted hospice sooner. Like so many hematologists and oncologists every day, I needed to have a goals-of-care conversation with my patient knowing that treatment could possibly help, but probably would not.
Crucial conversations like these are difficult for everybody. There are techniques to employ that my palliative care colleagues recommend. I tried to remember them as I started talking to my patient and his wife. He listened and clearly understood the gravity of the situation and the resulting poor prognosis regardless of treatment. I recommended hospice. He declined.
Getting to this point was uncomfortable enough, but then I came to a decision that I am still struggling with – acquiesce to his wishes and treat while feeling that I should not, or decline to treat further and transfer his care to someone more willing? This is not the kind of trick or treat I enjoy.
I look forward to the day when discussions of end of life are less awkward. Small movements have started to bring these conversations into the open. One such movement choreographs a dinner to encourage frank and open discussion of death (https://deathoverdinner.org/). Another reimagines the doula – a childbirth coach – as a coach at the end of life (https://www.agentlerparting.com/). Another provides a step-by-step approach to generating an end-of-life conversation (https://theconversationproject.org/). These, and many other efforts, did not occur in a vacuum. They emerged because of the growing recognition that the modern delivery of health care, and the culture it created, is inadequate for the end of life.
Until our culture changes, though, we are left with tough conversations and tougher decisions with our patients who are at the end of their cancer journey. I wish I could tell my junior colleagues that it gets easier with experience. In many ways it gets worse because of the long relationships we develop. As long as the rewards of treats are greater than the disappointments of tricks, though, I will continue trick or treating in my white coat costume.
Dr. Kalaycio is editor in chief of Hematology News. He is a hematologist-oncologist at the Cleveland Clinic Taussig Cancer Institute. Contact him at kalaycm@ccf.org.