Cancer patients want cost discussion, but fear initiating it

When patients get a cancer diagnosis, they generally have a lot of questions about their treatment plans. One question that often goes unasked is how much it's going to cost — even though they want to talk about it with their doctors.

Research presented at the annual meeting of the American Society of Clinical Oncology showed that a majority of patients think it's important to talk to their physicians about treatment costs, but only a small percentage actually have that conversation because of fears about how it would affect their care. When the conversation does happen, however, the cost of care is generally lower.

Cancer patients want the best care no matter the cost, said Yousuf Zafar, MD, a gastrointestinal oncologist at the Duke University Health System in Durham, N.C. There's a perception that the most expensive care is the most effective. Dr. Zafar said patients believe that if they bring up cost, physicians will prescribe a cheaper treatment plan, which in their minds is inferior.

Many in the oncology community have only started recognizing the importance of financial conversations between physicians and cancer patients. ASCO acknowledged that it needed to be addressed in 2009, when it drafted a guidance statement for physicians and vowed to make resources continually available to help doctors facilitate these discussions. It was a recurring theme at ASCO's annual meeting in Chicago in June.

There has long been a great divide among physicians about whether talking about cost is ethical when someone is being treated for a potentially life-threatening disease, said Lowell E. Schnipper, MD, a hemotologist-oncologist at Beth Israel Deaconess Medical Center in Boston. But most physicians now know there are many cancer treatments with similar efficacy rates available at a wide range of costs, so they are becoming more comfortable talking about such issues with patients, he said.

Financial toll of the illness

Numerous studies have found that patients, insured or not, are likely to delay care if they think they can't afford it, or become responsible for covering more of the costs. For cancer patients who can't put off care, the financial impact can be profound.

The American Journal of Medicine published a report in 2009 showing that more than 60% of personal bankruptcies filed in 2007 were attributable to medical costs. Seventy percent of those who filed had health insurance.

In a study in the May issue of Health Affairs, researchers at the University of Washington looked at personal bankruptcies filed in federal court in Seattle between 1995 and 2009 and found that cancer patients were 2.65 times more likely to go bankrupt than those without a cancer diagnosis. Younger patients had two to five times higher rates of bankruptcy than cancer patients 65 or older. The study matched 197,840 cancer patients against a control of a similar total, with 4,408 filing for bankruptcy protection after their cancer diagnosis, against only 2,291 of those adults without cancer. Researchers also noted that cancer patients spend at least $1 billion a year out of pocket of the $20 billion spent on cancer care on the nonelderly.

An earlier study from the December 2006 Health Affairs showed that over 10% of cancer patients have paid more than $18,585 in a year in out-of-pocket expenses, and 5% have costs that exceed $35,660. These amounts probably are much higher today. Adding to the financial burden, cancer patients often must stop working, and their families must cut back on their jobs to help take care of them.

Dr. Zafar, lead author of a report presented at the ASCO meeting, found that half of the more than 500 cancer patients surveyed wanted to have a conversation about costs with their physicians, but only 19% actually did. For those who did, the majority had lower out-of-pocket costs compared with patients who did not talk about costs with their doctors.

Benefits of the talk

Dr. Zafar said it is difficult, if not virtually impossible, for a physician to know the financial implications of every treatment option because of the differences in insurance plans, hospital costs and many other factors.

“I don't think we, as physicians, need to have all the answers,” he said. “But it would definitely help to know that our patients are having the problem.” He calls it the “financial toxicity” of cancer and compares it to the toxicity of chemotherapy. “I can't necessarily prevent that physical toxicity, but if I educate patients about it, I can at least help them through the process, and I don't think anyone can argue that's unhelpful.”

ASCO's 2009 guidance statement said physicians “must understand the unique needs of each patient when making treatment decisions, including consideration of out-of-pocket costs.” The statement said the ASCO's Value Task Force will have resources available to make such decisions, including the cost of treatment. Other medical organizations, including the American Medical Association, have issued similar declarations.

Dr. Schnipper, who chairs ASCO's Value Task Force and helped draft the guidance statement, said many newer drugs are still under patent and cost far more than older drugs that are off-label but just as effective. Alternative treatment options need to be discussed with patients. Explaining the value and benefits of each option also is important, he said.

Another research paper presented at the ASCO meeting by researchers at the University of Wisconsin Hospital and Clinics found some patients were willing to forgo treatment with high-cost drugs that yield only modest survival benefits. For that study, 169 patients with advanced prostate cancer were surveyed on their willingness to pay for a hypothetical $100,000 drug that would improve survival by an average of four months with minimal side effects. Senior author Jeremy Cetnar, MD, a medical oncologist at UW Hospital, said the impetus for the study was an actual drug that costs $100,000 for three injections, which many patients indicated they were unwilling to take even at no cost to them. The survey involving the hypothetical drug found that 17% said they would not want the treatment even if they had no out-of-pocket expenses. Twenty-one percent said they would accept the drug only if they had no out-of-pocket costs. The median price others were willing to pay for the drug was $20,000. Most of the patients (79%) agreed that a discussion of costs with their physician was appropriate.

Dr. Zafar said physicians should not fear the cost conversation with patients. “We may not have all the answers, and that's OK,” he said. He recommends finding other resources to help patients, such as financial assistance programs from pharmaceutical companies, social workers and financial counselors. “This can only help strengthen that doctor-patient relationship and possibly improve the quality of care that we deliver.”