Nearly 5,400 terminally ill people in the nation have used medical aid in dying laws to obtain prescription drugs to end their lives, a first-of-its kind study led by a Rutgers School of Public Health has found.
About 70% of the people who used the law to die over the last 23 years were diagnosed with cancer. They were also overwhelmingly white (96%), typically in their mid-70s, and educated — with three out of four having attended college or graduated with at least one a degree, according to an article in the Journal of the American Geriatrics Society last month.
The 95 New Jerseyans who used the law to die since it took effect in August 2019 reflect the same demographics. Of the 50 people who died last year, 70% had a cancer diagnosis, 70% were college attendees or graduates and 94% were white, according to Health Department data. (The 2021 state data was not available in time to be included in the Rutgers study.)
Understanding the characteristics of the people who use the law is important because it raises questions about whether this end-of-life option is broadly and equitably available, said Elissa Kozlov, the study’s lead author and an instructor at the Rutgers School of Public Health. The fact that minorities and people who did not go to college are not well represented may reflect personal choice. But it could mean the option is out of reach to them and the law is inequitable, she said.
Kozlov said she can only speculate why only some people use the law. Collecting the data is the first step toward more in-depth research.
“Further research in this area is necessary because although MAID (medical aid in dying) will likely never account for more than a small portion of deaths, it is becoming more common in the states where it is legal, and it’s currently on the legislative agenda of another 14 states,” Kozlov said.
Cost could be a factor. Patients must pay out of pocket for the physician visits that are required in order to get the prescription, and for the combination of lethal medication. There is no national aid in dying law and therefore Medicare will not cover these expenses, Kozlov said.
In New Jersey, the life-ending medications cost about $1,000, said Robin Plumer, a physician whose practice, Compassionate Endings NJ, promotes itself as the only one in the state focused on aid in dying.
Using the law also takes effort, which may be too taxing for terminally ill patients and their families. Few doctors and pharmacists are willing to help someone die, and most do not advertise these services. Compassionate Endings NJ has helped 50 New Jerseyans, predominately in south and central Jersey, end their lives.
Patients and their families may run out of time before they find the help they need. Patients have to verbally ask their doctor twice over the span of 15 days and submit a request in writing stating they had been “fully informed” of the benefits of palliative care, the availability of pain control and other alternatives. A second physician would need to verify the diagnosis.
Trust is also a barrier, especially among Black people. There is ample research documenting the mistrust Black people have for medical institutions as well as evidence that minorities do not have access to the same quality of care, Kozlov said.
Terminally ill people learn about the medical aid in dying law typically when they are receiving palliative care, a medical discipline that focuses on easing the symptoms of a serious illness. But Black people use palliative care at a far lower rate than white people, said Brandi Alexander, the national director of Community Engagement for Compassion & Choices, an organization that advocates for the passage of aid in dying laws.
About 82% of hospice patients in 2018 were white (who represent 75.8% of the U.S. population), compared to 8.2% for African Americans (who represent 13.6% of the U.S. population) and 6.7% for Hispanics (who represent 18.9% of the population), according to the National Hospice & Palliative Care Organization and Census Bureau, respectively, Alexander wrote in an email.
This disparity “highlights the larger problems of access to care and lack of information that underserved communities face when trying to get care,” Alexander said. “What we are finding in the usage data from authorized states is similar to the trend in all healthcare, including medical aid in dying, hospice care, palliative care and other end-of-life care options. Communities of color are not accessing any of them at the same rate as white Americans.”
A national poll in 2016 found that that while 73% of white people and 67% of Latinos expressed support for aid in dying, 53% of Black people agreed with the statement: “Physicians should be allowed to assist terminally ill patients in ending their life.”
Alexander said more frank discussions about treatment options would help overcome resistance in minority communities to end-of-life planning, Alexander said.
But cultural, economic and personal conflicts abound, Alexander said, ranging from religious beliefs, a desire for more aggressive medical treatment, mistrust of the health care system and “a lack of knowledge of services or myths about hospice.”
Ten states have aid in dying laws: Oregon, Washington, California, Colorado, Hawaii, New Jersey, Maine, Montana, New Mexico, Vermont and Washington D.C.
The Rutgers study is based on data from 1998, the year after Oregon enacted the first medical aid in dying law, through 2020. Doctors have issued 8,451 prescriptions to assist terminally ill patients in Oregon, Washington, California, Colorado, Vermont, New Jersey, and Maine, according to the article.
It’s not unusual for people to not use the medication, either because they change their minds or die before taking it. The data reflecting the 5,329 people who used the prescription to die is from Oregon, Washington DC, and Hawaii.
The other authors of the study are Molly Nowels, Michael Gusmano, Muhammed Habib, and Paul Duberstein.
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Susan K. Livio may be reached at slivio@njadvancemedia.com. Follow her on Twitter @SusanKLivio.