Barriers to Expanding Perinatal Palliative Care, Hospice

A lack of trained staff and evolving health laws are among the leading barriers to expanding perinatal palliative and hospice care among underserved populations.

Populations of color often see disparities when it comes to access to perinatal palliative and hospice care, according to Dr. Marilyn Fisher, physician at Albany Medical College, part of the New York-based Albany Med Health System. Fisher also serves as professor of pediatrics and of biomedical ethics education and research at the Albany Medical Center.

“With regards to racial disparity, we know it’s out there,” Fisher told Hospice News. “There’s literature that shows that newborns in hospitals that are in predominantly Black neighborhoods have a higher mortality and more complications than those born in white neighborhoods. It’s about plugging these populations into the health system better, regardless of ethnicity, race or background, and give them the care they need.”

Systemic challenges

Infant mortality rates were 2.4x higher among African Americans and non-Hispanic Black populations in 2020 compared to caucasians, according to a report from the U.S. Centers for Disease Control and Prevention (CDC). Congenital malformations and maternal complications were among the leading causes of infant deaths among Black populations.

Mistrust and fear of discrimination are among the common barriers, along with social determinants of health such as insurance coverage, socioeconomic status and transportation, according to recent analysis from researchers at the Morehouse School of Medicine’s Department of Obstetrics and Gynecology.

Evolving reproductive health laws may also be a contributing factor to lagging access, as well as higher mortality rates among pregnant patients, the researchers indicated. Laws that have restricted Black and Hispanic women’s access to certain reproductive health services have contributed to disparities, they wrote.

About 21 states have laws in place that either restrict or prohibit abortion access prior to pregnancy, according to recent data from The New York Times. Some of the states with restrictive reproductive health laws have passed policies related to perinatal palliative and hospice access. Kentucky, for example, recently passed legislation requiring the delivery of perinatal palliative care in hospitals, birthing centers and among midwife providers.

Women who choose perinatal hospice tend to be white, married and religious with above-average incomes, according to recent research from the Family Research Council. Researchers surveyed patients across 11 health care organizations nationwide. The analysis was in part intended to gauge quality experiences among shifts in reproductive health laws, according to the researchers.

“Only 19% of women with life-limiting fetal diagnoses were given information about perinatal hospice, and that speaks to the lack of knowledge that there is within the medical community about these programs,” said researcher Mary Szoch, director of the Family Research Council’s Center for Human Dignity. “That drives who goes to perinatal hospice and who receives a certain type of care. There needs to be more of a push for legislation that supports these programs and information about them.”

Nearly two-thirds (62%) of respondents indicated that perinatal hospice services had a positive impact on their pregnancy decision, the research found.

Reproductive health laws may be impacting not only access to perinatal palliative and hospice services, but also the availability of professionals to provide these services.

“We are going to have a critical lack of hospice and palliative care physicians, and there’s an increasing dearth of doctors who are not trained in perinatal care,” Fisher said.

Training for perinatal palliative and hospice care may not be available in many parts of the country, particularly in hospital settings serving underserved populations, according to the National Hospice and Palliative Care Organization (NHPCO). The lack of training creates knowledge gaps among clinicians around these services and what patients may be eligible to receive care.

An insufficient supply of educated and trained health professionals can mean that underserved populations are less likely to be aware of and access perinatal palliative or hospice care, NHPCO indicated.

“The current workforce is difficult to pin down,” an NHPCO spokesperson told Hospice News in an email. “However, most are currently from obstetrics or palliative care teams. The most successful partnerships are with these two services, but almost all are hospital-based providers.”

Improving quality, access

Misconceptions about these perinatal services proliferate among providers and patients alike, according to NHPCO. A common misunderstanding is that perinatal palliative and hospice care is “giving up,” according to an NHPCO spokesperson.

Breaking down barriers involves expanded community outreach and provider education, according to NHPCO. This will include emphasizing the differences between perinatal palliative care and hospice.

“Perinatal and neonatal palliative care has evolved over time. Perinatal palliative care is a medical specialty whereas perinatal hospice is not,” said the NHPCO spokesperson. “Pediatric patients (including neonates) are usually eligible for hospice when they have a 6-month prognosis of life. The goal is to emphasize the highest quality of life for the infant and family while providing time for memories despite a diagnosis or length of life.”

Perinatal hospice can help families through what is often a difficult and complicated grieving process, according to Jennifer Buawens, director of the Center for Family Studies at Family Research Council.

The Family Research Council research found that many women receiving this care reported positive outcomes around improved social support, particularly when it came to processing traumatic grief, Bauwens stated.

Having emotional, spiritual and social support in perinatal hospice was marked among the highest valuable services that patients received, especially when it came to bereavement, she added.

“What happens for these families is that there’s help during the health crisis but not after,” Bauwen said. “Social support is one of the major factors of what helps people go through the grieving process effectively. In that vein, it’s recognizing that although there are politics around abortion, there’s a complicated grief picture that emerges for those who have an adverse diagnosis.”

A significant part of improving access and quality among underserved populations is ensuring that providers are adequately trained to deliver culturally sensitive care, according to Fisher. Having a firm understanding of patients’ goals of care, values and belief systems is a core part of clinical training, she stated.

“It’s important that clinicians discuss what to expect and what the family’s values are, what’s most important to them,” Fisher said. “The biggest challenge is having everybody on the same page in regards to what’s happening in utero. But having that knowledge is power to help them have as much information as possible to make their best decision.”