Historically oncologists have been criticized by the rest of the medical community and by cancer advocacy groups for not “coming clean” with cancer patients whose disease progressed to the point where survival would be short, regardless of what was done.
A recent analysis by the American Society of Clinical Oncology, the leading organization to which oncologists belong, revealed that fewer than 40% of cancer patients reported having a candid discussion with their oncologist as their end of life approached. Only 45% of patients dying of cancer were enrolled in hospice programs, and of that group fully a third did not join hospice until they were in the last week of life. Up to a third of patients dying of cancer had chemotherapy in the last month of life, when it was likely to do no good.
Enter health-care reform. A key component of health-care reform (“Affordable Care Act”) passed by Congress last year was under Medicare the inclusion of reimbursement for physicians to have an end-of-life discussion of up to an hour. Because this provision of the law was demonized as “death panels” by a vocal minority, it was stripped from the final legislation. However, when Medicare issued its administrative regulations last November, it was put back in without requiring Congressional approval.
All of us who care deeply about our patients thought, “Wow, this is great!” And then somewhat mysteriously, and probably as part of a larger deal to compromise with the more conservative Congress, the Obama administration issued new rules in January revoking reimbursement for end-of-life discussions. According to the New York Times on January 4, the new Speaker of the House was quoted as saying, “…the provision could be a step down a treacherous path toward government-encouraged euthanasia,” and the administration caved.
Despite all the heated rhetoric, the Oncology community still has the opportunity to clean up its own act and exert a leadership role in discussions about end of life. Clearly chemotherapy after patients become bed-ridden with terminal cancer does not work. This point has been shown repeatedly in published studies. Clearly many Oncologists find it easier to continue to treat instead of discussing the painful subject of death. The Congress and the administration have blinked; some would say wimped out. ASCO as an organization and Oncologists as individuals have the responsibility to fill the void.