Many of us think of cancer as a terminal illness, but as treatments have become more sophisticated, more and more people are living longer with cancer. So is it becoming a chronic condition like rheumatoid arthritis or insulin-dependent diabetes? A panel at this past weekend’s Association of Health Care Journalism 2015 conference addressed this question, starting with a metaphor that has really lodged itself in my brain: the Niagara Falls approach.
After she was diagnosed with stage-four breast cancer and her oncologist asked her what she wanted to accomplish, Amy Berman, RN, a grantmaker and senior program officer at the John A. Hartford Foundation, replied,”I want to do ‘Niagara Falls.'” For Berman, Niagara Falls means continuing to live with as high a quality of life as possible, and then when such quality is no longer sustainable, dramatically dropping to the inevitable end point. By contrast, a different oncologist had announced to her that they should fight the thing full-force, do everything possible to beat it, including a double mastectomy and chemotherapy until her body could no longer handle the toxicity. Berman thought this would be an inverse Niagara Falls, dramatically reducing her quality of life and then dragging on to the inevitable end.
Berman, who is something of a cancer celebrity, has lived nearly 5 years post-diagnosis at 11-20 percent odds, and she has never been hospitalized. She was beaming during her panel. “I look good,” she said, as the chuckling audience caught her joie de vivre. “And I feel the way I look.”
Berman made the point was that “as our nation ages,” providers need to have serious discussions with patients, not shield them from the truth through rosier prognoses. We need to debunk the myth that palliative care means giving up or accepting a shorter life, she said – rather, it focuses on quality of life and what’s important to patients. It also shifts care from hospital to home, and in doing so saves money: Berman passed up an estimated $1 million in treatment over the past 4 years. “This is how we need to think about care,” she said. “Managing people to live well with serious illness… My cancer cannot be cured, but I’m also not dying today.”
George Sledge, MD, professor of oncology at Stanford, a member of the Stanford Cancer Institute, and a medical writer, is on the same page about palliative care. He said he considers it a success if his patients never go to the hospital. But that doesn’t mean he brushes off the ways in which cancer is different than truly chronic diseases.
Living with cancer carries a huge psychological, financial, and physical burden. According to the CDC, “chronic” means controlled but not cured; although this can be relevant to both cancer and rheumatoid arthritis, cancer treatment is not sustainable – it is highly toxic and causes many drug-related complications. “Chronic” cancer also always remains deadly, with shrunken metastatic nodules “maintaining” on CT scans, relapses occurring decades later, and cancers that change tactics and resist treatment in what Sledge compared to a “whack-a-mole game.” It’s hard for a patient to ever fully relax in that situation. Our goal, Sledge said, half chuckling and half serious, should be to emulate the naked mole rat – researchers can’t give them cancer, no matter how hard they try; the animals’ stretchy high-melanin skin wraps around cancer cells and locks them there. He asks, “Can we alter humans so cancer can be a true low-burden chronic disease?”
Laura Dunn, MD, professor of psychiatry and psycho-oncologist at the Hellen Diller Family Comprehensive Cancer Center at UCSF, meanwhile, wants to draw attention to the importance of considering patients as complete persons whose lives didn’t just begin once they were diagnosed with cancer. Every patient, she pointed out, brings something to the disease, be it substance abuse, trauma, anxiety, personality, sleep habits, or relationships. Patients often continue feeling bad after they have been deemed treated, and then they feel bad about not being back to normal. They often have many conflicting fears as well as spiritual needs – and since standard prognoses don’t predict psychological factors or gauge pre-existing vulnerability, she said, clinicians should remember to incorporate bio-psychological assessments in their care.
Previously: How I’ve survived survivor’s guilt, A rare cancer survivor’s journey to thriving and advocating, Identifying disparities in palliative care among cancer and non-cancer patients, How a Stanford physician became a leading advocate for palliative care, Beating the odds: Life as a chronic cancer patient and Fear of recurrence an issue for some cancer survivors
Photo by Artur Staszewski