Already, 2024 has brought a growing body of research in palliative care covering more ground on challenges linked to utilization and access, health disparities, lagging clinical awareness and other aspects impacting quality and care delivery.

This year has kicked off with a host of palliative care studies at global and national levels. Data trends reflect an increasing aim at understanding ways to improve serious illness care access and quality outcomes.

Digging into palliative care barriers

Not enough cancer patients with malignant ureteral obstruction (MUO) receive concurrent palliative care services when the need arises, according to a study published in January in Urology Practice, a journal of the American Urological Association (AUA).

The study points to the ongoing challenge of limited access to palliative and hospice care as demand rises among swelling aging populations.

“Time spent on nonhospice [palliative care (PC)] was brief and did not alter end-of-life health care utilization(HU)],” researchers wrote in the study. “Hospice significantly reduced end-of-life HU. PC consultation should be considered at the time of MUO diagnosis.”

Patients 18 years and older at the Loyola University Medical Center who received an MUO diagnosis from May 2014 and August 2020 were included in the analysis.

The illness often presents with an advanced disease progression with a median survival of approximately three to seven months of life following diagnosis, data shows. Nearly 48,000 people are diagnosed with MUO annually in the United States, according to AUA researchers.

Nearly 39% of the patients were referred to palliative care services. Only 2.2% received palliative referrals prior to their MUO diagnosis and 11.1% were referred afterward, the study found. The median time from a palliative consultation to hospice initiation was 12.5 days, with an average time of 36 days from the consultation until a patient’s death.

More than half (53.9%) the patients utilized hospice services, with an average length of stay of 12 days, the study found. A lack of hospice utilization was also associated with decreased end-of-life health care costs, researchers indicated.

“Increased care collaboration across the continuum could play a key role in improving palliative and hospice utilization,” the researchers stated. “Urologists’ frequent involvement in MUO management, regardless of underlying malignancy, may permit them to play a key role in promoting interdisciplinary collaboration amongst primary teams and PC providers.”

A need for improved clinical education

A lack of clinical understanding of palliative and hospice care exists among health care professionals in other settings – a long-standing barrier preventing utilization growth.

Medical students often lack exposure to both palliative care and hospice throughout the course of their education. The issue proliferates beyond the United States.

Case in point, a cross-sectional study in Jordan published in BMC Palliative Care earlier in January found that medical students lack the appropriate knowledge and skills related to palliative and end-of-life care delivery.

“The study revealed that medical students lack the appropriate knowledge and skills related to palliative and end of life care,” the researchers wrote. “Palliative care is not given the priority in medical education; thus, medical students are not formally trained and educated about palliative care and end of life care.”

About 404 medical students from six different clinical programs participated in the survey gauging their understanding of palliative care and their attitudes toward terminal illness. Participants answered a questionnaire using the Palliative Care Assessment Knowledge (PCAK) and Frommelt Attitudes toward Care of the Dying Scale Form B (FATCOD-B) as scales.

In one cohort, 38.6% of the medical students reported having a “moderate level” of knowledge related to the nature of palliative care. Less than half (40.6%) of these participants indicated having an understanding of palliative pain and symptom management.

In another cohort of the study, medical students reported “inadequate knowledge” concerning palliative care services. Roughly 25% did not correctly answer questions related to pain and symptom management.

“[This study] highlighted the weak knowledge that counteracted their attitudes, inferring that their general practices and personal information did contribute to their positive attitudes,” researchers said in the study. “This also indicates that medical students are almost rich ground to learn and practice palliative care in more comprehensive and standardized methods if given the opportunity.”

Inequities among underserved pediatric palliative populations

More research has delved into the driving factors impeding access among underserved populations as health equity issues increasingly come to the forefront.

A recent analysis of pediatric palliative care studies spanning the last five years found that increased research attention has focused on systemic racial issues related to seriously ill health care access among children in the United States.

Racial inequities exist in the delivery and quality of pediatric palliative care services, the analysis, published in The Lancet Child & Adolescent Health journal, found. The research spanned data from Jan. 1, 2017, to July 31, 2022, to examine potential racial and ethnic disparities among pediatric palliative populations.

“We summarize evidence on racial and ethnic inequities in the quality of pediatric care,” researchers stated in the analysis. “Our review of recent literature reveals an urgent need to develop and implement effective interventions, including coordinated healthcare and cross-sectoral strategies that fundamentally redesign systems and policies to promote equitable and excellent health for all children.”

Children in racial and ethnic minority groups received poorer quality compared with white pediatric patients, according to the analysis.

The data found “widespread patterns” of inequitable treatment across pediatric specialties, including palliative and primary care, behavioral health, neonatology, surgical and emergency medicine, developmental disability care, and inpatient and critical care settings.

Overall, children from minority groups had poorer quality outcomes compared to white pediatric patients.

Potential factors fueling disparities include family socioeconomic status, clinical characteristics tied to medical condition severity and diagnosis, differences in site of care and implicit biases among clinical teams, researchers indicated.

Contributing researchers hailed from Harvard University, Australian National University, University of Minnesota, University of California, Ann & Robert H Lurie Children’s Hospital of Chicago, Northwestern University, Children’s Hospital Los Angeles and the Stanley Manne Children’s Research Institute, among others.

“Inequitable treatment persisted across pediatric specialties, including neonatology, primary care, emergency medicine, inpatient and critical care, surgery, developmental disabilities, mental health care, endocrinology, and palliative care,” researcher Dr. Nia Heard-Garris said in a news report. Garris is a pediatrician, researcher and assistant professor at Northwestern University’s Feinberg School of Medicine Department of Pediatrics.