Andrew L. Pecora, MD
Oncology & Biotech News
Chief Innovations Officer, Professor, and Vice President
of Cancer Services
John Theurer Cancer Center
at Hackensack University
In all my years in clinical practice (now over 30), I have never had a patient ask me if I could help them die more cost efficiently. I know there are many legitimate points to the current national dialogue regarding end-of-life care. Of course it is appropriate to be sure that our patients have an honest and complete assessment of their disease status and likely response to therapy throughout all stages of their care. It has always been our job as their cancer care physician to guide them even when our guidance is not what one would like to hear. We must never offer therapy of any kind that has no hope of changing the natural history of their disease if untreated, particularly when the therapy has the potential for toxicity and results in further cost. If only it were this clear and practical in real life.
Imagine for a moment that you are walking across a frozen lake and to your horror you hear a cracking noise. Before you can react, the ice breaks and you plunge into ice-cold water with your head submerging. I am sure a number of thoughts would immediately begin to go through your mind: reflecting on how dumb you were not to take the bridge down the road; worrying about your wallet and iPhone getting wet; and developing a strategy to get out of the cold water. If you are unable to get out yourself after one or two tries, I suspect you would call for help and you would soon no longer be thinking about anything else but surviving. As the cold sets in, you might begin to panic and really call for help. Now, just imagine one moment more: People start to collect on the shore but cannot come out on the ice and have no rope to throw you, so all they can do is share encouraging words but you and they realize that their words cannot help. At what point do you give up and think about the people on the shoreline and how they feel watching and being unable to help? You know at some point that without getting out, you will die. Is it worth it to keep thrashing your legs and waving your arms and calling for help, or would it be better to fall under the water so everyone on the shore can waste no more time and get back to doing something more productive. A bit long-winded, but I suspect you get the point.
Recently, I had three patients “fall through the ice.” The oldest was only 45 years old. They each fought valiantly, but their disease never let them “out of the water.” I gently introduced the discussion of end-of-life care to each of them, and not one was happy about it, with two telling me if you cannot help me, please find me someone who can. My entire team spent an hour with one of these patients making all other patients scheduled for visits that day wait for their care. After believing we had finally convinced this patient that hospice was the best choice for her, she left and immediately sought care from a neighboring hospital emergency room. The other two patients were able to find phase I trials to participate in against my advice, and neither lived more than a few weeks.
As I reflected on these three recent examples, it convinced me that the end-of-life narrative deserves another perspective: one from the people “on the shore” who want to help but are unable to. I suspect that those people who are unable to help while watching someone drown do not have a good night when they go home and share a sense of emptiness that lasts some time. Imagine now what it is like for professionals who do this all the time. As our dialogue continues regarding end-of-life care, we must not forget or minimize the desires of the person “in the water” regardless of how fruitless they may be. No less for those on the shore who are forced to watch but are unable to help. There is nothing easy or practical about it.