During a recent survey of dietitians, nurses, pharmacists and pharmacy technicians who work for Optum Infusion Pharmacy, investigators identified a dramatic example of how language barriers can impede home nutrition care.
A 29-year-old patient with a developmental disability showed signs of a bowel obstruction due to tumor compression. The patient was started on parenteral nutrition (PN) in the hospital and discharged on home PN (HPN). The patient’s primary caregiver was her mother, whose preferred language was Spanish. The family was educated on HPN administration by a home health agency registered nurse who only spoke English.
When a Spanish-speaking pharmacy technician from Optum followed up with the patient’s mother, he discovered a significant error: The family had not understood the English instructions and had connected the patient’s 20-hour cyclic PN back-to-back, without the necessary four-hour break in between infusions.
“It’s a simple step that we may think should be easily understandable, but when patients and families don’t get information in their preferred language, a ‘little’ step can become a big issue and could have become an adverse event,” said Christina Ritchey, MS, RD, LD, CNSC, FASPEN, a clinical program manager at Optum and a lead author on the study, during a session on health disparities and social determinants of health (SDOH) in home nutrition care at NHIA/DC 23, in National Harbor, Md.
Ms. Ritchey stressed that these language gaps are not isolated events. “Approximately 39% of the U.S. population have limited English proficiency,” she said. “How many of our patients are not primarily English speaking? Are we giving them the right tools and resources to understand their medication and their infusion? Are we finding ways to communicate in patients’ preferred language, or are we expecting them to meet our needs rather than us meeting theirs?”
SDOH Data Underscore Problem
SDOH are gaining increasing attention. These determinants include educational access and quality (including spoken language, communication and health literacy), healthcare access and quality, neighborhood and environment, social and community context, and economic stability. All of these factors can have a greater influence on a patient’s health outcome than clinical care, Ms. Ritchey noted (Am J Prev Med 2016;50[2]:129-135). “We can provide the best clinical care, but if we’re not addressing all of these SDOH to meet our patients’ needs, outcomes still may be negative.”
A multicenter study published in 2022 found that 13.1% of patients served by 200 individual home infusion pharmacy locations lived in rural areas, with an increase over the three-year analysis period between 2018 and 2020. “Rural Americans are more likely to die from chronic diseases, are often underinsured and generally have less access to care compared with an urban population,” Ms. Ritchey said. “That’s just one example of how one’s neighborhood environment acts as a social determinant of health. A safe home environment with a refrigerator, freezer and reliable electricity are essential for a person to safely receive home nutrition. Economic stability is obviously relevant to many of our patients, as most of them are in and out of the hospital, often have multiple comorbidities, and lots of medical bills.”
Not a Predetermined Outcome
In a general session on culturally responsive care, Erika McMullen, MA Ed HD, the CEO and founder of the Moxie Consulting Group, which educates healthcare organizations in health equity and culturally competent care, suggested reframing SDOH as social drivers of health (Figure). “The word ‘determinants’ sounds hopeless, as if we’re discussing something that is already predetermined, fated, destined,” she said, citing an article from the National Association of Community Health Centers. “Instead, it’s more empowering to think about drivers of health that we can potentially drive in a different direction.”
This requires valuing culture as a way to increase understanding, rather than as a problem to be overcome, Ms. McMullen said. “Ask the patient, ‘What are your aspirations for health?’ rather than assuming what they want. For example, I know someone who is a caregiver who is trying to get a patient to stop eating fried foods. The patient’s response: ‘I’m not giving up plátanos maduros!’ She wants help with the L4-L5 spinal pain that is affecting her mobility, so maybe they can shift to another intervention that might have an impact and is more likely to be followed.”
Institutional harm has left a legacy of lasting distrust in the healthcare system, Ms. McMullen said. “Hospitals have been around for a long time and have had a long time to harm people. That’s an uncomfortable statement for me to make.” And she noted that this distrust is rooted not only in historic inequities but current practice. According to a 2018 report from the Center for American Progress, one in four LGBTQ people experience discrimination in healthcare, and 29% of individuals who identify as transgender or nonbinary noted that a provider refused to see them. And a Commonwealth Fund report released in 2022 found that one in four Black and Latinx/Hispanic adults aged 60 years and older reported that they have been treated unfairly or have not been taken seriously by health professionals because of their racial or ethnic background.
“Social systems and structures need to be forced into the direction of common good, because they are not going to do it on their own,” Ms. McMullen said. “I went into healthcare believing that it was different, but now I realize that we have to push, fight and advocate for that change.”
Public Policy Agenda
Several pieces of legislation could improve equity in access to home infusion care, according to Christina Ritchey, MS, RD, LD, CNSC, FASPEN, a clinical program manager at Optum.
The first, the Health Equity and Accountability Act of 2022, has been introduced in every Congress since 2003. In the words of Reps. Barbara Lee (D-Calif.) and Judy Chu (D-Calif.), two of the bill’s sponsors, “[the] HEAA envisions a country where all Americans, regardless of race, ethnicity, or background, have the security of quality healthcare—a nation where each one of our neighbors can visit the doctor and know they’re being heard, respected, and cared for.”
The legislation addresses several primary areas of need, including:
- data collection and reporting; culturally and linguistically appropriate care;
- health workforce diversity;
- improvement of healthcare services (designed to improve health insurance coverage within communities of color);
- improving health outcomes for women, children and families;
- mental health;
- addressing high-impact minority diseases;
- health information technology access, accountability and evaluation; and
- addressing social determinants of health (SDOH) and improving environmental justice.
“These key areas all relate to home infusion and the populations we serve,” Ms. Ritchey said. “Advocating for this legislation is one of the biggest opportunities for us as home infusion professionals to make an impact.”
The Medical Nutrition Therapy (MNT) Act, originally introduced in 2021 by Sens. Susan Collins (R-Maine) and Gary Peters (D-Mich.) as well as Reps. Robin Kelly (D-Ill.) and Fred Upton (R-Mich.), was later added to the HEAA. The bill would expand Medicare Part B coverage of outpatient MNT to beneficiaries with prediabetes, obesity, high blood pressure, high cholesterol, malnutrition, eating disorders, cancer, gastrointestinal diseases including celiac disease, HIV/AIDS, cardiovascular disease, and any other disease or condition causing unintentional weight loss.
“Hopefully it shocks you that all of these diseases and diagnoses are not covered,” Ms. Ritchey said. “Medicare Part B currently only covers outpatient MNT for diabetes, renal disease and post-kidney transplant. The legislation would also allow more professionals, including nurse practitioners, physician assistants, clinical nurse specialists and psychologists, to refer their patients for MNT. Right now, it can only be provided by an RD [registered dietitian] with a physician referral.”
In March 2023, the Centers for Medicare & Medicaid Services introduced its updated framework for health equity, aimed at reducing health disparities. One of its goals is to expand the collection, reporting and analysis of standardized data in order to better understand community needs.
“As home infusion providers, we should be gathering this data from all of our patients on start of care, not only about race and ethnicity but also language, gender identity, sex, sexual orientation, disability status and SDOH,” Ms. Ritchey said. “All the common electronic health record systems used in home infusion allow you to create health equity questions and customize as needed. It may be a difficult task that may feel uncomfortable, but ultimately it’s voluntary and it will enable us to better serve our patient populations.”
Hone Your Listening Skills
Home infusion providers can be part of that change by providing more culturally responsive care. That requires trust, Ms. McMullen said, which in turn means spending time listening to and getting to know each patient. “Be more curious about your patient and their values and priorities, and acknowledge that the healthcare system doesn’t work equally for everybody,” she said.
She recommended several reflection questions from the Structural Competency Working Group to improve culturally responsive care:
- What questions do you have that might help you to better understand the patient’s situation?
- What observations do you have about the language used in the medical note?
- Do you think that the writer’s assessment and differential diagnosis are adequate? What would you add?
- What social, political and economic structures might be contributing to the patient’s health outcomes?
Ms. McMullen also suggested using the P.E.A.R.L.S. mnemonic (box) for clinical communication skills to increase listening, trust and equity.
Ms. McMullen reported consulting fees from Astellas Pharma. Ms. Ritchey reported no relevant financial disclosures.
This article is from the October 2023 print issue.