Financial Toxicity Discussion Needs to Include Undocumented Patients
As reported to Chris Pirschel, Staff Writer, by Margaret Rosenzweig, PhD, CRNP-C, AOCNP®, FAAN
This letter is in response to your featured article, 'Financial Toxicity,' published in ONS Voice (https://voice.ons.org/news-and-views/financial-toxicity-and-its-burden-on-cancer-care). The problem emphasized in the article is that a large percentage of patients receiving cancer treatment are reporting that the cost of treatment contributed to their level of distress.
I am cognizant and do agree that healthcare providers must play a key role in helping ease this burden placed on patients facing cancer treatment. However, with all the knowledge of available resources to which nurses may direct patients and their families, we still have barriers that prevent us from performing at optimal levels. Nurses are also privileged to have discussions with their patients about socioeconomic issues that can impact their care; hence, nurses are in a great position to direct patients and their families to free or reduced medication costs and other financial assistance.
However, referrals and assistance for undocumented patients need to be addressed. It is no secret that a majority of patients entering emergency rooms and clinics are undocumented. Although the article provided valuable information about the patient-related financial distress associated with cancer treatment, it would have been most enlightening if the article had also included helpful tips about how we as nurses may address this issue to help ease the financial burden for our patients. Additionally, providing some recommendations on how to safely advocate for this population of patients would have been most beneficial.
Nurses do not wish to add another burden to already-stressed, ill patients by putting them at risk for deportation. How do nurses direct patients to these financial and social services without putting them at risk for deportation? Despite the present political arena in which we now exist, nurses still have the responsibility to advocate for patients but would like to do so safely.
The Expert Responds
Financial toxicity in cancer care is an increasingly recognized burden for many patients. Driven by many factors, financial toxicity is often a combination of a patient’s individual characteristics, the costs associated with care (https://www.bankrate.com/mortgages/how-to-afford-home-expenses-during-cancer-treatment/), and the overall impact of the illness on a patient’s ability to work throughout the cancer journey. Financial toxicity negatively impacts patient outcomes, and many patients struggle with costs regardless of whether they’re covered by health insurance—this includes undocumented immigrants. Currently, more than 11.1 million undocumented immigrants (http://www.pewresearch.org/fact-tank/2017/04/27/5-facts-about-illegal-immigration-in-the-u-s) live in the United States, and they aren’t immune to cancer diagnoses.
For undocumented patients with cancer, financial issues—not just toxicity associated with cancer—are everyday struggles. Their inability to pay for cancer care is exacerbated through a number of barriers. Most undocumented patients lack insurance coverage: According to the Migration Policy Institute, 71% of undocumented individuals (https://www.migrationpolicy.org/research/demographic-socioeconomic-and-health-coverage-profile-unauthorized-immigrants-united-states) in the United States are uninsured. Financial toxicity is further compounded by the inability to qualify for city, state, and federal charity programs available to other patients with cancer, along with the fear of becoming visible to immigration authorities through the healthcare system. These barriers literally become deadly issues for this patient population.
Because stabilizing a patient with cancer is categorized as emergency care by the Emergency Medical Treatment and Labor Act (https://www.cms.gov/Regulations-and-Guidance/Legislation/EMTALA), patients—undocumented, uninsured, or not—can receive stabilizing treatment in emergency departments, regardless of their ability to pay. However, treatments like chemotherapy are not considered emergency care and are not covered by federal aid. Therefore, without insurance or assistance, undocumented patients are unable to receive cancer treatment. For healthcare providers, knowing that patients—regardless of their immigration status—are receiving inadequate or substandard care can be ethically and morally distressing (https://voice.ons.org/news-and-views/how-to-have-ethical-discussions-in-your-practice). Moreover, healthcare professionals are dedicated to “do no harm” to their patients, which could be complicated by a patient’s immigration status.
Although the Affordable Care Act addressed some issues uninsured Americans face, it didn’t include subsidies or protections for undocumented patients. Those without insurance can purchase plans in the health insurance marketplace, but without federal subsidies many undocumented patients can’t afford access to those plans.
Resources for Undocumented Patients
The harsh reality is that few cancer care resources are available for undocumented, uninsured patients. In a perfect world, the path to citizenship is the best way to realize the federal and local resources available to American citizens. However, for many, struggling to pay for cancer treatment could also mean inability to afford the costs associated with legalizing their citizenship. Although hiring an immigration lawyer may be an option for some, the lengthy process of going from undocumented patient to legalized citizen may not happen fast enough to address the cancer diagnosis.
Some resources do exist that don’t ask for citizenship status. Public hospitals and clinics, charity care programs within institutions, private foundations, and drug and device manufacturers often provide assistance for patients. Federally qualified health clinics throughout the nation provide basic primary care and services and don’t require information regarding immigration status. Faith-based or charity clinics may also be available for undocumented patients, such as those provided through local Catholic or other denominational charities. Speaking with a social worker in your cancer center or clinic may uncover further opportunities for assistance.
Unfortunately, research devoted to undocumented patients with cancer is lacking, especially considering that this patient population likely mistrusts the healthcare system. Moreover, openly volunteering immigration status on federally funded research programs could lead to that information being used against them. Because this group lives with concern of deportation, the numbers of individuals affected by cancer and their population-specific burdens are difficult to document.
Working With Undocumented Patients
Collaborating with social service providers, social workers, and case managers is one way that oncology nurses can locate and identify available resources for uninsured and undocumented patients. If care is supplemented by state or charitable agencies, the documentation of medical necessity may need to be renewed frequently. As a nurse, an important role may be to facilitate the relationship with the financial resource person to learn as much as you can about the resources patients are using.
Be familiar with other community resources to help provide education and information of what’s available, including basics like emergency housing, food, mental health services, and other needs. Instead of finding this information for yourself, encourage representatives from available community programs and resources to visit for a staff meeting or lunch and learn to share information with the rest of the staff.
On a big-picture level, nurses can continue to advocate for their patients and access to quality care. Speak up about individuals who are suffering because of barriers to care. Stories highlighting the consequences for denying cancer care to individuals will not be heard in the United States without the cancer community advocating for those individuals. On a practical and financial level, undocumented, uninsured patients dying from cancer will come to the emergency room when they are critically ill from their diagnosis. The costs of emergency room care, even in the last few days of life, may well exceed what the costs of chemotherapy would have been for this patient population.