“We need to talk about financial toxicity in the same way we talk about other side effects of treatment. When you document a side effect of treatment, you have an obligation to treat it. The same is true of financial toxicity.”
Alan Balch, PhD
Prepared by the National Patient Advocate Foundation
With support from the Robert Wood Johnson Foundation
This guide aims to help health care providers, case managers and advocates understand the importance of talking about the costs of care and provide tools for having these conversations. We see this as a living document that we will continue to update as we move forward with our own work.
Why are Cost of Care Conversations Important?
Alan Balch, PhD
Today, virtually every person facing a serious or chronic illness experiences some level of financial toxicity. Patients and caregivers feel the impact of the costs of their care in a variety of ways. These include:
“We hear it from our callers every day. People are having to choose between buying groceries and paying their medical bills. They call and say I have this shoe box full of bills and I don’t even know where to start.” Rita, Patient Advocate Foundation Case Manager
Financial toxicity is not limited to people who are uninsured. It affects people who are underinsured or have insurance plans with limited or inadequate coverage as well as people with good insurance who find their lives altered by their condition.
It is important to have conversations about the cost of care with every patient and to include caregivers in these discussions. The costs of care can influence treatment decisions and are a critical component of shared decision making.
Suleika Jaouad, survivor and advocate
Suleika Jaouad had just graduated from college and was looking forward to life in New York City and her career as a journalist. Then she was diagnosed with acute leukemia. She underwent aggressive chemotherapy and a bone marrow transplant. She survived and has become an advocate and spokesperson on the experience of young adults facing cancer. Her successful treatment, however, came at great cost, financially, physically and emotionally. She accumulated thousands of dollars in medical bills as a result of copays and out of network charges. Her mother quit her job to move to New York to be her daughter’s caregiver. Suleika shared her cancer experience in a series of blog and video posts in the New York Times called Life, Interrupted, available on her website, suleikajaouad.com.
Tom Ema lived with an indolent form of lymphoma for many years. When his disease became more aggressive, he and his wife decided to move from Colorado to Virginia to be closer to their family. There, they encountered significant problems in finding adequate insurance coverage, confounded by the fact that Tom was self-employed. They thought they had signed up for good insurance and had an oncologist in network but the bills kept mounting. Tom’s treatment cost $10-15000 a month, and they were told that it was not covered. At one point, Tom decided to stop treatment because he didn’t want to leave his family with these huge bills. It took intensive intervention from the Patient Advocate Foundation to resolve these issues, and keep Tom alive long enough to benefit from a new drug specifically for his condition.
Tammy Taylor, PhD
Tammy Taylor, PhD, is a nurse practitioner who works in a community-based health care practice in the Mississippi Delta, specializing in cardiac care. Most of her patients are either on Medicaid or have no insurance. In addition to providing health care, Dr. Taylor also has to work closely with her patients to help them access and afford their medications and treatment. She tells of one young woman with postnatal heart disease who had to choose between taking care of her three children and the heart care that was essential to her own health and life. Her patient understood the risks, but like so many mothers, put her children’s wellbeing over her own.
What the Data Say
In a Patient Advocate Foundation Survey, over 70 percent of patients say they want to discuss the costs of their care with their health care providers. These data from PAF show the impact of financial toxicity on patients.
Barriers and Challenges to Cost of Care Conversations
“I think in many instances immigration status plays into cost of care discussions. Immigrants are afraid to open up about their financial status or discuss family issues because they fear the repercussions.” Provider, Center for Health Care Progress
“I didn’t know I could say ‘how much does it cost to come here.’ I didn’t know physicians had anything to do with the cost part of care.”
patient, Consumer Reports, RWJF Funded Research
“We recognized that patients were having cost issues, but didn’t appreciate the scope of the challenges patients were facing.”
Physician, Consumer Reports, RWJF Funded Research
Research shows that cost of care conversations do not add significantly to the time physicians spend with their patients. Many take a minute or less.
“Simply providing patients with a list of prices related to their care is not adequate. In theory, this information contributes to transparency and helps patients make decisions, but in reality, most patients do not have the knowledge base or context to evaluate these data and apply them to their individual situations. Pricing information should be available, but it is not a substitute for discussing the actual costs of a person’s care.”
NPAF Case Manager
Having the Conversation
Either the patient or provider can initiate a conversation about the cost of care. Many patients are more comfortable when their provider opens the door to these discussions and asks if there are any concerns about paying for treatment, handling issues such as transportation, child care or lost work time, or the impact of medical costs on that person’s life.
Keys to Having Cost of Care Conversations for Providers
“We need to systematically screen for financial issues, just like we screen for depression or pain,”
Physician, University of Rochester Medical Center
Peter Ubel, MD, Duke University
“We often find out at the next visit that our patients didn’t fill their prescription and the reason is, it cost too much. But they didn’t want to tell us that in the visit.”
Medical Assistant, University of Rochester Medical Center
Shirley, cardiac patient
Mary Jackson Scroggins, Advocate and survivor
Joan’s husband has a good job, and an employee-based insurance plan. It was not until Joan was diagnosed with breast cancer, however than she learned that there was a $25000 cap on coverage for any single condition. The diagnosis was frightening but the prospect of not being able to afford her care or bankrupting her family was terrifying. Joan’s doctor assured her they would work with her and that she would get the best available treatment regardless of her ability to pay. It made a big difference for Joan as she went through the process, but her experience also played a major role in turning her into an advocate.
“I had just learned my diagnosis, and then the insurance coverage issue came up. There was no way that twenty-five thousand dollars was going to cover my treatment, even if there we no complications. I thought to myself….I just can’t afford to have cancer.”
Judy, breast cancer patient
“It’s really critical to know what your insurance plan covers, what your deductibles are going to be, your copays, how the plan deals with out of network charges. Most people don’t think about this until they have a shoe box full of bills they don’t understand and cannot pay. You want to try to be proactive in knowing in advance what kind of medical expenses you are going to face, and you can’t do that unless you talk to your doctors and your insurance company from the beginning.”
Rita, Patient Advocate Foundation Case Manager
How to Save Money Before, During and After Your Doctor’s Appointment
10 Essential Questions to Ask
Today, most Americans live one large medical bill away from serious financial hardship. What can you do to keep yourself as safe as possible? Remember these questions throughout your health care journey:
Cost of Care Discussions are most effective when:
For additional on Cost of Care Discussions and the RWJF Funded Research
Annals of Internal Medicine Supplement May 7 2019