Disparities Remain in End-of-Life Care in New Jersey

Newswise — Minority patient groups—including those whose primary language is not English and those who have lower middle-income economic status—with a diagnosis of metastatic cancer, are less likely to receive end-of-life palliative care or a hospice referral, according to Rutgers researchers who say more standardized policies are needed to diminish gaps in care.

“New Jersey is a diverse community, and our clinicians must take into consideration language barriers and potential translation obstacles that can lead to misinterpretations of symptoms,” said Elissa Kozlov, senior author and instructor in the Department of Health Behavior, Society, and Policy at the Rutgers School of Public Health. “When we remove these obstacles and educate our workforce, we are able to work towards ensuring that we are providing the best quality of life for patients.”

Two studies, “Hospice Referral in Advanced Cancer in New Jersey” published in the Journal of Hospice and Palliative Nursing and “Palliative Care Use in Advanced Cancer in the Garden State” published in Cancer Nursing: An International Journal for Cancer Care Research, examined end-of-life care referrals, specifically inpatient palliative care consultations and hospice referrals, among 28,697 hospitalized patients diagnosed with metastatic cancer. 

For people diagnosed with metastatic cancer, end-of-life planning becomes critically important in impacting one’s quality of life and end-of-life care goals.

Researchers at Rutgers School of Public Health and Rutgers School of Nursing utilized the New Jersey State Inpatient Database to assess demographic and clinical symptoms, including pain and depression, and their effect on inpatient palliative care consultations and hospice referrals. 

The results suggest that disparities in referrals and palliative care consultations exist. They are influenced by both demographic and clinical variables, like the presence of pain and a depression diagnosis, say Rutgers researchers who insist that further work by clinicians and health care workers is required to educate and standardize policies to diminish gaps in care. 

“Our studies revealed that older adults on Medicare were more likely to have both an increased chance of receiving an inpatient palliative care consultation as well as a hospice referral, however, it is imperative all patients with metastatic cancer have access to important programs such as palliative care and hospice, which improve symptomatic relief,” says Bridget Nicholson, first author of both papers and Rutgers School of Nursing Doctor of Philosophy graduate.  

Demographic variables, such as economic status, influenced the presence of palliative care consultations. Lower middle-income patients not only had a lower occurrence of inpatient palliative care consultations, but they also had a lower likelihood of receiving a hospice referral. Black and Hispanic individuals and those whose primary language was not English were also less likely to be diagnosed with depression, a common symptom that triggers palliative care consultations and hospice referrals.

These disparities highlight the need for increased education for clinicians, including physicians and nurses, regarding palliative care and hospice programs, say the authors. This is in addition to the creation of best practices that diminish the impact of language and cultural differences to reduce misdiagnoses due to variation in symptom presentation and translation issues when working with patients, researchers said.

“Diversity in population can yield diverse presentation of symptoms,” Kozlov adds. “Depression symptoms can appear differently in Black and Latinx as compared to white individuals. We must create valid, reliable, and culturally relevant measures to assess patients’ needs because they do impact the treatment options and care they receive.”