As more terminally ill people use the N.J. aid-in-dying law, calls grow for expanded access

In the past five years, doctors in New Jersey have evaluated and approved almost 300 people to end their lives by self-administering prescribed medication. (Getty Images)

Since New Jersey lawmakers passed an aid-in-dying law five years ago, the number of terminally ill patients who have sought to end their lives by self-administered medication has jumped almost tenfold.

Now, advocates are working on two fronts to push state policymakers to “course-correct” the law and make it more accessible to people nearing death with unbearable pain and suffering.

They want to abolish a provision in the law that restricts it to New Jersey residents. Two terminally ill patients from Delaware and Pennsylvania and two New Jersey doctors sued the state last summer, calling the residency restriction discriminatory and unconstitutional.

They also want state legislators to move on a stalled bill that would allow doctors to waive the mandatory 15-day waiting period after patients’ initial requests for life-ending medication. The wait was meant as a safeguard but instead has become a barrier, supporters say.

“Between 25 and 30% of patients that initiate the process don’t make it the 15 days to their second visit, either because they die or they lose their eligibility because mentally they’re no longer with us or they’re too weak to self-medicate,” said Dr. Deborah Pasik, a rheumatologist for more than 35 years in Morristown. “It’s really, really tragic when that happens.”

The advocacy comes as bodily autonomy in health care decisions has become a flashpoint nationally, with conservative states increasingly restricting abortion rights and access to gender-affirming care.

“I definitely worry,” Pasik said. “This is a sanctuary state for abortion care and for gender-affirming care. Why can’t it be sanctuary state for medical aid-in-dying too?”

An upward trend

New Jersey’s Medical Aid in Dying for the Terminally Ill Act was deeply controversial, with critics, including former Gov. Chris Christie, raising ethical and religious objections and supporters insisting people deserve dignity and autonomy in death. Even Gov. Phil Murphy, who signed the law into passage seven years after it was first introduced, acknowledged mixed feelings, writing that he was “torn” between the principles of his long-held Catholic faith and compassion for those who face intolerable suffering as their lives end.

But by April 2019, it had mustered enough votes to pass, and the law went into effect in August 2019, 22 years after Oregon became the first state to pass such a law.

Now, 10 states and the District of Columbia have similar laws, and another 18 states — including New York, Pennsylvania, and Delaware — have pending legislation, according to Compassion & Choices, a Colorado-based nonprofit that advocates for end-of-life autonomy.

Medical aid-in-dying is something that few people will need, want, or qualify for, but such laws are important for terminally ill people who want to direct their own care and avoid unnecessary suffering, said Corinne Carey, Compassion & Choices’ senior campaign director for New Jersey and New York.

“These laws give everyone the peace of mind of knowing that they have this freedom to make their own decisions at the end of life and chart their own death experience,” Carey said.

Data shows there’s a growing demand for it.

In the past five years, doctors in New Jersey have evaluated and approved almost 300 people to end their lives by self-administering prescribed medication, with the number steadily climbing from 12 in 2019 to 101 last year, according to the Office of the Chief State Medical Examiner.

Those who applied last year ranged in age from 37 to 100, but most — 81% — were 65 or older, data shows. Most (83%) chose to die at home, while the rest died at hospice facilities, nursing homes, someone else’s home, and a hotel. Terminal cancer was the most common diagnosis for people who used the law last year, representing 61% of cases. Applicants also tended to be female (57%), college-educated (71%), single, divorced, or widowed (62%), and white (95%).

Carey attributed the racial disparity to cultural objections and health literacy, and she consequently has done outreach in communities of color.

“If you lack health literacy, you’re certainly not going to know about this option,” Carey said. “There’s a whole range of options, and the important thing is that you’re in the driver’s seat, no matter what your decisions are.”

Waiting period

In New Jersey, people given a diagnosis of six months or less to live can seek a prescription for life-ending medication under the law, as long as two doctors confirm the diagnosis. The law requires the patient to make two verbal requests 15 days apart, as well as one in writing.

Under a bill Assemblyman Herb Conaway Jr. (D-Burlington) has introduced twice since 2022, that 15-day waiting period would be eliminated for patients not expected to survive for 15 days.

“Most laws need to be adjusted at one point or another, driven by the data that we accumulate in the wake of the initial passage,” Conaway said.

Most states that have legalized aid-in-dying used Oregon’s law as their blueprint, but the waiting period is a “remnant” of that pioneering law that many have since eliminated, Carey said.

New Jersey’s bill has no co-sponsors or Senate companion, but Carey said she has been lobbying lawmakers to sign on to it — an especially urgent task if Conaway wins his bid for Congress in November and leaves state politics.

Conaway, a doctor who chairs the Assembly’s health committee, said he remains committed to the bill and said it could see traction this fall.

“We in health care are taught to trust our patients and their judgment and offer to them the best advice that we can under the circumstances before us,” he said. “The decision should always rest with the patient.”

Residency requirement

Last August, two terminally ill women from neighboring states filed a federal lawsuit looking to end New Jersey’s residency requirement for aid-in-dying.

Plaintiffs Judith Govatos, a Wilmington, Delaware, resident with stage-4 lymphoma, and Andy Sealy, a Philadelphia resident with metastatic breast cancer, wanted to apply for life-ending medication under New Jersey’s law but couldn’t because of the residency requirement, according to the complaint.

Sealy, 44, died earlier this month at her home, seven years after her cancer diagnosis.

Pasik, founder of New Jersey Death with Dignity, and Dr. Paul Bryman, a geriatrician and medical director of a Camden County hospice, joined as plaintiffs, saying the requirement prevents them from treating out-of-state patients because of potential criminal or civil liability.

Attorney General Matt Platkin asked a judge in January to dismiss the case. There has been no ruling on that motion.

SUBSCRIBE: GET THE MORNING HEADLINES DELIVERED TO YOUR INBOX