Few Know About New Jersey’s End-of-Life Options

Despite being legal for over five years, New Jersey’s medical aid in dying law remains largely unknown to the vast majority of state residents. A new Rutgers-led study reveals that only about 11% of New Jerseyans are aware they have access to this end-of-life option, highlighting a significant gap in public health awareness.

The Medical Aid in Dying for the Terminally Ill Act, which went into effect in 2019, allows qualifying terminally ill patients to request medication they can self-administer to end their lives. However, the lack of awareness about this legal option means many eligible patients may not know about all their end-of-life care choices.

National Trend of Low Awareness

The findings come from a comprehensive study published in JAMA Network Open that surveyed 3,277 adults across all 50 states and Washington, D.C. The researchers found that nationwide awareness about medical aid in dying laws is strikingly low, with 51.3% of respondents unsure if the practice was legal anywhere in the United States.

Even more concerning, 50.8% of participants did not know whether medical aid in dying was legal in their own state. This lack of awareness was particularly surprising in the 10 states and Washington, D.C., where the practice is currently legal, covering approximately one-fifth of the U.S. population.

“Survey respondents’ lack of awareness was particularly surprising in states where MAID is legal, which lets us know that those with access to MAID may not be aware of their end-of-life health care options,” said Elissa Kozlov, an assistant professor in the Department of Health Behavior, Society and Policy at the Rutgers School of Public Health and lead author of the study.

Interest Despite Lack of Knowledge

Despite low awareness, the study found significant interest in medical aid in dying as an option. Approximately 44% of all respondents indicated they would consider using medical aid in dying if diagnosed with a terminal illness in the future.

This interest crossed demographic boundaries, contradicting historical data that shows most patients who currently use medical aid in dying tend to be white and have higher education levels. According to Rutgers University, the research revealed that 43.2% of Asian participants, 34% of Black participants, and 41.9% of Hispanic participants reported they would consider medical aid in dying under certain conditions.

New Jersey’s Experience

Since the law took effect in New Jersey, 287 residents have used the medical aid in dying option, with 101 cases occurring in 2023 alone, according to the state’s latest annual report. To qualify, patients must be at least 18 years old, mentally capable of making healthcare decisions, have a prognosis of less than six months to live, and be physically able to self-administer the medication.

The increase in usage year over year suggests growing utilization, but the study’s findings indicate this growth could be hampered by the widespread lack of awareness. If the current trend of limited public knowledge continues, many eligible patients may never learn about this legal option during their end-of-life planning.

Barriers to Access

The researchers identified several potential barriers beyond simple awareness that may limit access to medical aid in dying, particularly for historically underrepresented populations.

“Systemic barriers—including financial constraints, lack of insurance coverage, difficulties accessing healthcare and the siloed nature of healthcare delivery—may limit MAID’s access for historically underrepresented populations,” said Paul Duberstein, chair of the Department of Health Behavior, Society and Policy and senior author of the study.

These barriers may explain why, despite interest across demographic groups, actual utilization of medical aid in dying has skewed toward certain populations. Addressing these systemic issues could help ensure more equitable access to this end-of-life option.

Policy Implications

The researchers suggest that as more states consider legalizing medical aid in dying, their findings could help inform policy development and implementation strategies. According to NJ.com, medical aid in dying is currently legal in 10 states and Washington, D.C., with several other states considering similar legislation.

Healthcare providers, policymakers, and advocacy groups may need to develop more effective public education campaigns to ensure that patients are aware of all their legal end-of-life options. The researchers emphasize that informed decision-making requires awareness of available choices.

“The study’s findings highlight the need for public education, policy initiatives and patient-clinician discussions to ensure equitable access to patient-centered end-of-life options and informed decision-making,” Kozlov noted.

As the conversation around end-of-life care continues to evolve, addressing the knowledge gap about medical aid in dying could become an increasingly important part of ensuring comprehensive and equitable healthcare for terminally ill patients.