The last time I saw Elaine, the ravages of her battle with peritoneal cancer had started to show. She had lost weight and, if I were writing about her in a medical chart, I would have described her as cachectic. She seemed frail and often had to excuse herself from our meals to deal with various unpleasant GI symptoms. The one thing that hadn’t changed, though, was her sunny disposition and boundless warmth, although our conversations now included planning for her death instead of hopes for the next round of chemotherapy.
Elaine and her husband, Brian, were fierce warriors in their battle against the horrible disease that ended her life. She endured round after round of chemotherapy and all of the associated misery that accompanies it. She developed a bowel obstruction and had to have a nasogastric (NG) tube inserted into her stomach through her nose—one of the most miserable interventions we inflict on people in the hopes of getting them better. She got more Avastin—a drug that blocks the blood supply to tumors—than most people ever get but it was not cost-free. She got severe headaches and hypertension from it which landed her in the hospital and forced discontinuation of the drug.
Brian, a very connected health policy guru, tirelessly reached out to experts in oncology, genomics, and pharma hoping to uncover new approaches that could extend, if not save, her life.
Theirs was one of those love stories that little girls dream about. And, then she died.
Less is more
Brian published an opinion piece on the experience in the June 27, 2016 issue of JAMA. It is titled, “Less is More – The Gold Standard for Current Cancer Treatment.” He describes Elaine as “the model of an engaged patient” who wanted to “knowledgeably participate in the decisions that would have an effect on her health.” Together Elaine and Brian learned everything they could about her cancer and its treatments, becoming “fluent in genetic mutations and protein overexpressions.” Even so, he writes,
“…on major treatment decisions we tended to unquestioningly follow the advice of our oncologist…[he] referred to each new round of therapy as the ‘gold standard,’ meaning the approach that scientific evidence shows works the best.”
The problem was that they,
“…did not appreciate then how little evidence there [was] that Elaine’s gold standard treatment [would] produce outcomes that actually matter to patients and families.”
Much has been written about cancer drugs that are deemed successes because they extend life by a statistically significant number of months. Many bemoan the cost of those treatments both in terms of actual dollars spent as well as harm to the patients they are meant to help. I get all of that, but I also know that little by little what we have learned from the clinical trials has contributed to some of the cures we see today. Perhaps, one day, when we can do clinical trials in software-simulated humans, we can hold off on using these drugs in human beings until they are perfected.
But that still leaves us with the problems cancer patients and their families face right now. How are they—hopefully, guided by their oncologists—to balance the desire to postpone death by any means with the wish to live a life full of the joy of spending meaningful time with family and friends?
I believe the equation is different for every individual and every family. My father used to tell me he would jump off the Golden Gate Bridge if he ever got so sick that he couldn’t take care of himself. But when he was dying of metastatic melanoma, he had no desire to take matters into his own hands, rather choosing to let his adoring wife (my lovely stepmother Toni) care for him in the familiar surroundings of his home.
The information challenge
In his JAMA piece, Brian writes that most cancer patients’ outlooks are based on incomplete information about the ordeal ahead and their odds of success. I believe that is true. In fact, it is true not just for the patient, but often for the physician and the care team as well. There is a wide variation in the way patients respond to chemotherapy; some sail through while others are made desperately ill. There is still so much we don’t know.
There is also a difference in how much each individual person wants to know about their illness, its treatments, and side effects. I once took care of a doctor friend of mine in the ER. She had been diagnosed with breast cancer shortly after the birth of one of her children. Before I could even say hello, she said, emphatically,
“I know you have read my chart. I don’t want to know what is in it. I am going to beat this cancer. I don’t want anything that may be in the chart to discourage me.”
She didn’t know—and I didn’t tell her—that many of her lymph nodes were positive for cancer at the time of surgery signaling a poor prognosis. She underwent a brutal 5-drug chemotherapy protocol at a time when we didn’t have very good treatments for the side effects, but she survived.
In his piece, Brian provides a list of questions that he thinks should be a part the physician-patient discussion of treatment for advanced cancer:
- “How much time—worst, medium, and best cases—is each treatment likely to buy?
- Given the treatment agents involved, what are the likely adverse effects and their characteristics?
- What will they realistically mean to the patient’s capacity to enjoy remaining life?
- Will the struggle be worth the benefit?
- How would you advise your loved ones in this situation?”
He also notes that,
“it would have been valuable [to see] research that asks patients who have been through aggressive therapy and nearing death whether it was worth it and whether they would do it again.”
I think he is right. People should have these types of conversations and they should have access to as much information as they want at the time they want it. The Internet has already made a lot of this possible. Patients and families can now access the same scientific articles their doctors read; they can find peer groups and ask some of the patient experience questions via websites like Smart Patients or Patients Like Me.
As Brian suggests, we still need more research focused on patients’ perception of the value of aggressive “curative” treatments as their cancer relentlessly progresses, despite round after round of treatments. But, at the end of the day, we have to acknowledge that there are so many unknowns in cancer care—ranging from efficacy of treatments and tolerability of side effects for any given patient to knowing, with certainty, exactly what patients and their loved ones really want (whether its treatment or information, active engagement in decisions, or reliance on a trusted clinician). I suspect the best we can do, right now at least, is to lay out the options, provide access to reliable information (including ways to connect with peers), and then listen carefully and continually as patients make their choices.
The painting in this post was a gift from my dear friend, Elaine Waples Klepper.