KEY TAKEAWAY: For cancer patients’ quality of life is an important issue when deciding on treatment options, but older patients may be more likely to forgo treatment because they just are too tired to “fight the battle”.
When my mother’s cancer came back while she was in her 80’s she decided to skip treatment again because she was just too tired to go through more chemotherapy. At the time her oncologist’s office was like a mass market retailer with a “get them in, treat them and get them out attitude”. Nobody bothered to really talk to her and she rarely saw the oncologist as the nurses administered her chemo.
Older patients, who have cancer, may choose to forgo therapy because, as one patient told me, “there comes a time when you’re just too tired to keep fighting” in a healthcare system that treats conditions rather than patients.
Oncologists, and drug companies, should develop more guidelines that talk about who is a better candidate for new treatments besides physical characteristics. Patients mental states need to be evaluated as well and physicians need to be clear when they communicate with patients about treatment side effects. Instead of “label talk” they should have an open and honest talk with patients and their families so that they can decide themselves whether they want specific treatments.
[pullquote]The number of patients that decline conventional cancer treatment is substantial enough to warrant close attention. Effective patient-doctor communication is crucial in addressing this challenge.[/pullquote]
In my early days in pharma we developed a CD-ROM that would be given to patients who received a specific drug. It had testimonials from other patients as well as “real talk” about what to expect and how the drug worked. It was a huge success with both oncologists and patients, but the program was terminated because of the cost to update and manufacture the CD-ROM’s.
Instead of press releases with claims I would like to see data that talks about efficacy within patient age groups as well as psychological guidelines for determining patient treatment options.
“Refusenik” patients—as Time dubbed them—are a distinct phenomenon from patients who decline end-of-life care. Instead, these patients typically make the decision to forgo care soon after diagnosis, and the treatments they refuse could cure or control the disease. Although media reports have highlighted religious reasons for refusing care, most refuseniks do not base their choice on religion or mistrust of modern medicine, but rather they don’t want to endure side effects which affect quality of life.
“Survival is easy to measure, but what we don’t measure is how people live during the time they are alive, ” says a leading Oncologist. “The bitter truth is that none of us knows when our last days are going to be. What you can control is how you choose to live during the time that you are alive.” People who refuse treatment have in some ways already come to terms with this existential dilemma.