“There are certain choices patients make that I have never understood, choices that from my perspective as a doctor seem to undermine their very chances for survival. Or at least undermine the efforts doctors, nurses and even complete strangers make on their behalf.
“If I were in their shoes,” I have thought more than once, “I would do everything in my power to survive.”
But I am not in their shoes. And as much as I’d like to believe I have tried, I have not even begun to understand my role in their choices.”
Pauline Chen, M.D.
You can find thousands of personal stories on the ACOR lists about patients pushing the envelope further that anyone ever imagined. These daily stories are what make us, the 150 ACOR volunteers, so proud of the system we have been running since 1995. Just imagine! Thousands of people writing the positive stories of how they have survived the odds they were given, often multiple times. Just look at the great example of Steve Dunn, an exceptional human lesson in medical survival and patient empowerment. No wonder Stephen J. Gould’s The Median is Not The Message remains the all times favorite across our entire system. We are all infused with the idea that patient empowerment is so important for survival and has no limit to the benefits it offers.
I admit that we have a clearly positive bias. We love reading how people have “beaten the beast” as so many write. We have lost and keep on losing so many of our friends and colleagues that the bias is natural. Out of the original board members more than half have since passed away from a wide variety of cancers.
When I read Pauline Chen MD article and the Well blog entry associated with it, I was shocked. It is already so difficult to confront end of life via the virtual channels of communication the internet offers. How incredibly painful it must be for the doctors who are focused on life and survival! We need more reminders that the patient choices must be respected even when they shake us to the core. And as patients and caregivers we should also learn to be more understanding of the heavy toll our clinicians are subjected to. Just look at the high burnout in oncology. Administering palliative or terminal care is identified as a burnout cause. If you speak with oncologists you soon realize they are too often subjected to conflicts between wishful thinking and treatment failures. But they can never say a word about it to their patients. Similarly patients have complex thoughts. As Amy Silverstein says:
“I have not lived a well day since my surgery — not one — and this is a difficult truth to bear. And sometimes, on the very rare occasion, it wears me down to the point of wondering if the illness and struggle are worth it.”
There is a kind of unspoken code where neither the doctors nor the patients can ever talk openly about stopping treatments, as if discussing it would be an admission of failure.
I have received many requests, over the years, to create new, specialized lists on ACOR to offer a safe environment for patients diagnosed with stage IV cancer where patients no longer dealing with a possible cure can learn to deal with their own fear of death. Not surprisingly, most of the requests are made with the argument that only those facing their own metastatic cancer can understand the profound change in mindset it creates. There seems to be an incredible tension between the patients at the beginning of the cancer continuum, who want to look for a potential cure or at least a long period as an NED (No Evidence of Disease) patient and those who know that they will live with the constant and growing effects of the disease on their body.
Just as Dr. Chen has great difficulty understanding some of her patients decisions, so do early stage patients when confronted with the decision of advanced cancer patients to stop treatments. Our system of medical care has been built entirely on the premise it saves lives and is completely unprepared to assist patients for the end-of-life. But, as usual, supportive online communities can offer deep help. In our archives we have incredible stories of patients relating how they have evolved and have learned to accept the inescapable truth. Although these conversations do not fall in what is usually expected from medical communities they are in my opinion among the most powerful stories and deserve to be better known.