Age, race, income, language affect NJ access to end-of-life care
Two studies leaning on research out of the Rutgers School of Nursing and School of Public Health found New Jersey has low utilization of palliative and hospice care for patients with metastatic cancer, compared to the rest of the United States.
Some of the alarming disparities across demographics may be due to the Garden State being the most ethnically diverse in the nation, said the first author of both studies, Bridget Nicholson, a School of Nursing PhD graduate, clinical consultant, and nurse practitioner, but further research will be needed to determine if that theory holds.
What is clear is that metastatic cancer patients have a high symptom burden, characterized primarily by pain and depression, which Nicholson said can both be eased by palliative care.
The 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, established some opposing trends.
Nicholson said palliative care access was more affected by the age, income level, or insurance status of a patient than race or a language barrier, but treatment of the main symptoms, pain and depression, differed.
"Pain influenced the use of palliative care, and if you had pain, you were much more likely to have a palliative care consult, but depression was not predictive of an inpatient palliative care consult," she said, while adding that depression can manifest in some unique ways. "We need culturally sensitive scales to measure depression in diverse populations, so that we can identify it more appropriately across populations."
But she said Black and Hispanic residents were less likely to receive hospice referrals, which is concerning because it puts into sharp focus what New Jersey could be doing better to provide in-home care in certain communities and extend survival for patients — even if the path to get there has not yet really taken shape.
"Those patients who did not speak a primary language of English also had significantly lower odds of receiving a hospice referral," Nicholson said.
The data that was examined came from well before the COVID-19 pandemic, in 2018, but Nicholson admitted the coronavirus has changed everything, and newer figures need to be studied to really determine if New Jersey is improving in any of these areas.
Next would be giving health care providers the necessary education and training to infiltrate and benefit underserved communities.
"Patients deserve the same level of care regardless of their language spoken or their demographics, and pain and depression are symptoms that really need to be addressed," Nicholson said.