For patients who are chronically or terminally ill, palliative care is often misinterpreted as being end-of-life care before imminent death. The stigma of this type of care, often borne of inadequate health literacy, makes palliative care difficult for many patients to accept and healthcare providers to prescribe.
When patients lack health literacy, they have a difficult time understanding necessary information about personal health issues — including palliative care — which may put their health in jeopardy. With the aging of the U.S. population and the expected increase in the incidence of serious illnesses, the delivery of palliative care is projected to increase in the coming years.
Many people don’t understand what palliative care entails. According to research reported in the Journal of Palliative Medicine in 2019, 71% of U.S. adults reported they had never heard of palliative care. This lack of knowledge is symptomatic of a broader problem with health literacy, an issue the Health Resources and Services Administration (HRSA) indicates is most prevalent among older adults, minorities, those with lower socioeconomic status and those who are part of medically underserved populations.
Healthcare leaders play an important role in identifying and helping mitigate the limited health literacy in patients that can lead to confusion about palliative care. RNs who earn a Master of Science in Nursing (MSN) with a Family Nurse Practitioner (FNP) focus are poised to help break the barriers to health literacy for individuals of all ages. Advanced practice nurses can help patients better understand palliative care nursing, and other forms of healthcare, that can enhance people’s quality of life.
Barriers to Accessing Palliative Care
Researchers have found the U.S. has stalled in its efforts to improve access to, and attitudes about, palliative care. In a 2019 report, the Center to Advance Palliative Care (CAPC) said the nation only maintained, and did not markedly improve, the quality of its serious illness care compared to four years prior. Clearly, more work remains to be completed.
The Center, which has been collecting data about access to palliative care since 2008, found that one-third of the nation’s hospitals with 50 or more beds have no palliative care services. The Center also found palliative care is not widely available in the U.S. to patients living in rural areas.
Overall, researchers have found barriers to receiving palliative care that include the following.
Lack of Access in Rural Areas
Ninety (90) percent of hospitals with palliative care are in urban areas, according to the CAPC. Only 17% of rural hospitals with 50 or more beds report they offer palliative care.
Varied availability by region
Less than one-third of hospitals in the South-Central U.S. earned A or B grades from the CAPC. Additionally, less than a third of hospitals in Alabama, Arkansas and Mississippi have palliative teams. At the same time, the Northeast and Mountain regions of the U.S. have almost universal access.
Traditional focus on disease-specific treatment
The CAPC report cites the reliance on disease-specific care in the U.S., rather than on the needs of the whole patient and their family, as a barrier to palliative treatment. This traditional approach to treatment too often leads to challenges such as high costs, untreated conditions and more hospitalization in those facing serious illness.
Problematic insurance coverage
Medicare, Medicaid and many private health insurers provide full palliative care coverage for patients in hospice or the hospital. However, for patients who have chronic conditions but are not hospice eligible, the coverage is less extensive. A 2021 study published in the American Journal of Hospice and Palliative Medicine showed this lack of coverage is particularly pronounced for home-based palliative care.
FNPs and Palliative Care
Medical professionals say an important factor in overcoming barriers to palliative care access may involve using more Family Nurse Practitioners (FNPs) who are trained to alleviate suffering across the spectrum of healthcare.
As advanced practice registered nurses (APRNs), FNPs have master’s-level degrees with coursework that applies to clinical practice in a primary care setting. FNPs may work either collaboratively with a physician or autonomously in private practice, depending on local and state regulations. An FNP’s advanced training allows them to serve as primary care providers to treat both acute and chronic conditions
For patients who need pain relief and palliative care, FNPs act as teachers, counselors, caregivers and advocates. For FNPs, working in palliative care can mean working with other healthcare providers as part of a team effort. FNPs monitor medical and pain symptoms to ensure patients are given proper care. They also help patients follow medication procedures and treatment schedules to improve quality of life.
Registered nurses (RNs) who have already earned a Master of Science in Nursing (MSN) degree have the opportunity to advance their education and career by earning an FNP Post-Master’s Certificate. Most states require FNP candidates to pass the American Association of Nurse Practitioners Certification Program (AANPCP) exam or the American Nurses Credentialing Center (ANCC) Family Nurse Practitioner exam.
An FNP Post-Master’s Certificate provides pathways to careers that help patients in need of palliative care for life-threatening, chronic and acute illnesses.
Health Literacy in the United States
The publication Nursing2021 reports that 88% of U.S. adults have limited health literacy. More than a third of the nation’s adults — 77 million people — lack skills to prevent illnesses and diseases, which can lead to misunderstandings about types of treatment, including palliative care nursing.
The Health Resources and Services Administration (HRSA) says health literacy depends on individual and systemic factors that include:
- Communication skills
- Knowledge of health topics
- Limited English proficiency
HRSA also says poor health literacy negatively impacts a patient’s ability to effectively navigate the healthcare system, including understanding chronic care, filling out complicated forms and locating providers and services. In addition, limited health literacy hurts an individual’s ability to perform tasks such as:
- Recognizing the relationship between lifestyle choices and health outcomes
- Sharing personal information, such as medical history, with doctors and nurses
- Understanding directions on medicines and medications
- Taking part in self-care activities and chronic-disease management
With these potential problems in mind, healthcare providers should develop tools to help patients who have limited healthcare literacy.
How Nurse Practitioners in Palliative Care Promote Health Literacy
The first step for providers who want to improve patient health literacy and practice palliative care nursing is to focus on cultural competency. This competency refers to the ability to understand and communicate across cultural boundaries including language, lifestyle and religious beliefs.
HRSA and the CAPC recommend that all healthcare professionals, including nurse practitioners working in palliative care, follow other guidelines to assist patients with limited health literacy.
- Ask patients to repeat back medical instructions or demonstrate the procedure (called the teach-back method) to identify areas the patient does not understand.
- Use simple language and short phrases. Define technical terms in understandable wording.
- Organize information in a logical manner with the most important points first.
- Offer supplemental materials, such as videos and pictures.
- Present educational workshops.
- Provide information in the patient’s primary language.
- Assist patients in completing forms.
- Partner with community organizations to publicize healthcare options.
Nursing education programs also should offer opportunities for RNs to learn about health literacy.
Enhance Health Literacy and Palliative Care
RNs who are ready to earn an advanced education that can help them enhance patients’ health knowledge and promote palliative care should explore the Duquesne University online Master of Science in Nursing in Family Nurse Practitioner program.
The program is designed to provide nursing professionals with the expertise to diagnose and develop advanced treatment plans for individuals of all ages and in a variety of settings. Additionally, the flexible programming and online coursework allow RNs to continue their career and family commitments while earning an advanced degree.
Duquesne also offers an online family nurse practitioner post-master’s certificate for RNs who already have an MSN in a different area of focus.
Discover how Duquesne’s online MSN and post-master’s certificates programs can help you improve the lives of others — and achieve your professional goals.