As a family caregiver of a child with a chronic illness, Megan Hebdon, PhD, DNP, RN, NP-c, has experienced firsthand the financial stress over healthcare costs. “I don’t think those in healthcare really understand the personal and financial costs of illness and caregiving unless they have lived it,” says Hebdon, an assistant professor at the University of Texas at Austin School of Nursing.
Hebdon set out to help other clinicians understand the reality of their patients’ financial burdens. Palliative care nurses can lead initiatives to support caregivers’ financial well-being, Hebdon and colleagues argued in a recently published paper.1
Even with resources such as insurance and savings, “my family was still impacted and will forever be impacted by illness and caregiving,” Hebdon shares.
Hebdon’s retirement savings includes planning for the care of her child, along with current and future caregiving needs of parents, other children, and potentially spouses. “I keep thinking about all of the patients I serve without my resources, and how difficult the road is for them with trying to manage chronic illness and caregiving,” Hebdon observes.
Hebdon works in a clinic with a patient population that varies widely in terms of insurance and resources. The cost of care always is factored into the treatment plan. “I cannot dismiss this aspect of taking care of people, because I am not actually helping them if they cannot pay for what I prescribe or recommend,” Hebdon says.
It is ethically problematic that the U.S. healthcare system results in high costs for patients and caregivers, deferred care over fears of incurring those high costs, and poor health outcomes for financially vulnerable people, according to Hebdon. She suggests clinicians include the cost of care in discussions, help patients access charity care or financial counseling, and screen patients for social determinants of health.
“People should not get poorer or delayed care because they cannot pay for it,” Hebdon says. “People should also not go bankrupt because of their health or the health of those for whom they care.”
Natalie S. McAndrew, PhD, RN, ACNS-BC, CCRN-K, works with patients going through stem cell transplant and their family caregivers. Many express gratitude about their positive financial means to pay for the expensive treatment. When clinicians find out a patient is struggling with the cost of care, there is no easy answer. “‘How can we help people who may be struggling financially?’ is not a conversation that’s happening,” says McAndrew, assistant professor in the College of Nursing at University of Wisconsin-Milwaukee.
It is not because clinicians do not care, but because the healthcare system provides limited support, and finance often is separated from the clinical side of healthcare. “We as a society have an ethical obligation to consider family struggles and need to do better. While that requires a healthcare system overhaul, families need support now,” McAndrew argues.
For example, in the ED, patients often are discharged without anyone realizing they have no transportation to arrive at follow-up appointments. “The system itself is so broken. Our social workers are overwhelmed and aren’t able to provide that individual support,” McAndrew laments.
Sometimes, there are resources available, but patients and caregivers are unaware of how to access those. “When you’re already depleted, having to make multiple phone calls to get help is not possible,” McAndrew observes.
A financial navigator to identify resources can be helpful. Clinicians also can change their mindset to be more mindful of how the illness is affecting the patient and family financially. “Caregivers in general have made strides to be more family-centered, but I don’t think we always practice it. We need to include family caregivers as true partners,” McAndrew says.
Health equity is an ethical concern; not all families can access the same treatment (or treatment that is of high quality). “The patient is attached to a family system, and we need to do provide care more collaboratively,” McAndrew says. “That should include comprehensive support that addresses basic family needs [and] financial hardship.”
Social determinants of health affect “the health outcomes of patients more than anything else. Where we thought we were making progress, we realize we still have opportunities,” says Deborah C. Stamps, EdD, MBA, MS, RN, GNP, NE-BC, a leadership consultant specializing in health equity.
Healthcare providers have been aware of social determinants of health for some time. What has changed, says Stamps, is “previously in the healthcare settings, we really separated that from the clinical pieces of health. Now, we see that the social determinants of health really determine what your health outcomes are going to be.”
Clinicians can help by making referrals to community organizations, social workers, or care navigators, and by connecting patients with people who can help them obtain insurance coverage. “People might not even know they are eligible or meet the criteria for Medicaid or Medicare. Maybe they just never applied because they didn’t understand how to do that process,” Stamps says.
Providers also can consider whether the patient’s health plan limits certain treatments based on cost. “Some may not cover a prescription that costs $1,000 a month, but may cover a different one instead,” Stamps explains.
Providers can work with drug manufacturers to obtain samples or discounts on the patient’s behalf. It also is important for nurses conducting the initial assessment to document social determinants of health in the electronic record when patients are admitted or in the ED. “If there are issues with food, transportation, education and knowledge, financial difficulty, homeless situations, abuse, or depression — that triggers the nurse to request a consult,” Stamps says.
Good documentation makes the next care provider aware of the patient’s situation. “It’s not enough to just report and share the information; something has to be done about it,” Stamps stresses.
Providers can make referrals to social services to connect patients with smoking cessation counseling, housing agencies, or other programs. However, providers must be aware of the patient’s true situation. “Patients don’t want to be labeled or stigmatized,” Stamps reports. “Developing trust is really important and can impact what a patient shares with you.”
At the organizational level, data are important. “If we take data, and look at different diagnoses, and analyze it by ZIP code, gender, primary language, or race and ethnicity, we will see differences,” Stamps says.
Overall, outcomes might be moving in a positive direction, but this can be misleading. “Organizations have to be willing to pull back the layers of the onion, and be willing to look at that,” Stamps concludes.
REFERENCE
1. Thomas Hebdon MC, Phan CT, Phillips C, et al. Ethical and policy implications of financial burden in family caregivers. J Hosp Palliat Nurs 2022;24:E226-E232.
Clinicians should include the cost of care in discussions, help patients access charity care or financial counseling, and screen patients for social determinants of health.
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