When a patient receives bad medical news, it can be a paralyzing moment. It’s easy to see how any serious diagnosis can shatter someone’s life into a million pieces, but we often overlook what’s happening to the caregiver who’s devoting their time and energy to provide care. On top of the physical and emotional demands, the financial cost of caregiving is unavoidable.
What makes someone a caregiver? American caregivers support patients in a variety of ways. They can be young or old, live close by or miles away and provide care full time or part time. Many of us are caregivers – for our children, parents, siblings or even close friends. Maybe you are a caregiver who provides “hands-on” care now, but may be called upon to provide financial assistance in the future. It’s crucial for caregivers to make wise financial decisions about caregiving — for their loved ones and just as importantly, for themselves.
At 34 years old, Danielle Fontanesi had to give up her job as a full-time attorney so she could care for her husband, Matt. Matt was fighting acute myeloid leukemia and needed around-the-clock care while recovering from a stem cell transplant. Fontanesi wasn’t able to go back to work for more than a year, and found it challenging to find a new job given her employment gap, which cost her more than $175,000 in lost income. The cost of relocating next to a major cancer center where Matt was treated was also substantial.
“Not only did I lose income, I lost a year of career progression,” says Fontanesi. “We still had to pay our rent, car payments and hospital expenses, while not having income during this period.”
According to Gwen Nichols, MD, Chief Medical Officer of The Leukemia & Lymphoma Society(R) (LLS), Fontanesi is far from alone in her financial plight.
“Again and again, we find that caregivers make huge financial sacrifices to care for their loved one,” Nichols says. “When you tally up the losses, it’s quite astounding: loss of wages, loss of health insurance, loss of retirement savings and the list goes on. These hold serious financial consequences for caregivers.”
Over time, the economic burdens of long-term medical care can create added distress for patients and caregivers that is often called “financial toxicity.” Financial toxicity occurs when growing out-of-pocket healthcare costs lead to serious financial problems. Out-of-pocket costs can include anything from hospital stays or outpatient services to medical equipment and medications.
To help caregivers navigate the cost of cancer care for themselves and their loved ones, Nichols offers these important tips:
Encourage your loved one to seek a second opinion: When appropriate, caregivers should help their loved one seek a second opinion. A second opinion can help ensure an accurate diagnosis, which can then guide your loved one’s treatment plan. An accurate diagnosis enables resources to be directed in a way that offers your loved one the greatest potential benefits, both in terms of a better health outcome as well as financial impact. When weighing multiple treatment options or in circumstances of uncertainty, it’s also helpful to gain a second opinion to help inform the best course of care and avoid the detrimental health effects and costliness of incorrect or unnecessary treatments.
Help start a dialogue: It’s crucial to have an open conversation with healthcare providers about financial pressures. You and your loved one should partner with their medical provider to understand the cost of certain services and treatments. This information can help empower you and your loved one to make the right decision for you and your family. For example, your loved one may be able to choose among treatments or select providers or treatment centers that offer the same or even greater potential benefit, but at a lower cost.
Be an advocate for change: Your voice as a caregiver is valuable, and can help shape discussions about the cost of care. Whether you act as an individual or part of an organized effort by a patient advocacy organization, you can make an impact by sharing your story about the financial hardships you’ve experienced. These firsthand accounts are vital for spurring action. To learn more about LLS Advocacy and how you can raise awareness about the cost of cancer care, visit www.lls.org/be-an-advocate.
Take advantage of available resources: Caregivers are often hesitant to seek help and are often unaware of the many resources available to them at their fingertips. LLS has free resources and support services such as online chats with medical experts, support groups, help with financial pressures, referral to other helpful local and national resources, and more. To learn more, visit www.lls.org/support/caregiver-support.
Nichols also notes that it’s crucial to take time for self-care and remember that your family is your first resource, so don’t be afraid to reach out to them for help. There are many ways for friends and family to lighten the load in this challenging time: assisting with home repairs, running errands, or preparing a meal. These kind gestures go a long way when there’s financial strain. After all, if you sacrifice your own health and well-being, you won’t be at your best to effectively care for a loved one.