By Heather Millar
As I’ve mentioned many times, I am very, very lucky to have what the press have called a “gold-plated” insurance plan through my husband’s employer. Even with that privilege, cancer was a financial black hole for my family. Though our co-pays and out-of-pocket medical expenses were kept to a minimum, we’re still paying off the credit card debts we ran up because, for 18 months, I was too sick, too addle-brained or too tired to work.
And I know so, so many people who’ve had it much worse than my family did: A woman with metastatic breast cancer who was reduced to charity fund-raising and living on friend’s couches in the last months of her life; a woman with colon cancer who shared my radiation time slot and who lost her job while in treatment, a family who had to sell their house because the Dad had pancreatic cancer.
As a society, when we talk about cancer costs, we are usually talking about the costs of drugs, chemo, radiation, scans and the like. We’re talking about hospitals and employers and insurance companies. We too seldom talk about the collateral financial damage to patients, the family upheavals, the embarrassment, or the debt burden that may go on for years afterward.
Yet patients are reluctant to bring up any of these worries with their doctors because they’re afraid it will compromise their care, according to a new report from Duke University. Researchers there surveyed 300 patients who had insurance. Even with that medical coverage, some 57 percent of the patients surveyed said that they wanted to discuss treatment costs with their doctors. But only 19 percent actually had that conservation. Why? Because they were afraid that talking about cost would compromise their care.
If you want to know a major source of our healthcare system’s dysfunction, really, you need look no further than the results of this survey: Busy doctors trained to “do everything” regardless of cost. Too little talk about “goals of care,” that is, exactly what are the goals of treatment? Because, alas, not every patient can be cured. Patients reluctant to bring up the subject of cost because they’re terrified, embarrassed and overwhelmed. Patients who don’t think their doctors should consider recovery times, time off work for appointments, travel time, transportation costs, hotel costs and lost income when outlining a treatment plan.
The Duke researchers, who will present their results at the American Society of Clinical Oncology meeting in June, further questioned the patients who had the greatest financial distress, as measured by a tool used by financial planners. Of these struggling patients, 61 percent wanted to talk about cost. Only 25 percent did so.
Here’s the headline for patients: Those who did talk to their doctors felt that they were able to hold the line on costs but did not feel that their care was compromised.
“There’s a real disconnect,” says Yousuf Zafar, M.D., MHS, assistant professor at Duke and lead author of the study. “[Our study] suggests that the perceived barriers to the cost conversation aren’t real, and we need to do more to foster a dialogue around these issues.”
Yes, yes, yes! Doctors and hospitals keep saying that patient values and preferences should be part of the medical decision-making process. For many of us, money is a HUGE issue when we’re ill. Let’s not be afraid to be honest about that.