By Daniel Krieger
If you live on the Upper West Side and are terminally ill and want to end your suffering, you do not have the option to get help from a doctor that someone living just a few miles away in New Jersey does. That’s because elected officials there passed a state Medical Aid in Dying for the Terminally Ill Act, while New York legislators have opted not to do so.
In 2011, my mother was terminally ill and wanted to speed up her painfully slow dying process and needed guidance since all her doctor had to say about it was, “You don’t want to do that.” So she spoke to Judith Schwarz, an end-of-life counselor who is now the clinical director of End of Life Choices New York, a nonprofit whose mission is to provide New Yorkers with better end-of-life options and care through advocacy, counseling, and education.
“Your mother called at a time when she had decided that she no longer was going to pursue life-prolonging measures,” Schwarz told me in an interview when I first met her a decade ago for an article I was writing about my mother’s death and the movement to expand end-of-life options in New York. (Shortly after the article came out, Terry Gross interviewed Schwarz on Fresh Air.)
Sitting in the living room of her spacious, bright, West End Avenue co-op on a recent sunny afternoon, with her two dogs napping nearby, Schwarz, who is 78, filled me in on the latest developments. After over 20 years of providing end-of-life counseling, she is more experienced and knowledgeable about this than just about anybody.
There are now 10 states that have legalized medical aid in dying, known as “MAID.” It started with Oregon in 1994, then Washington in 2008, then Montana, Vermont, California, Colorado, DC, Hawaii, Maine, New Jersey in 2019, and New Mexico last year. The laws allow a doctor to prescribe a fast-acting drug cocktail that patients must take themselves, though some who receive such a prescription never end up using it. But, Schwarz says, “People are comforted by knowing they have a choice even if they never act on that choice.”
Another change is that nowadays there’s a lot more conversation about MAID, because “politically and socially, people are more comfortable talking about it,” she says. Yet there is still little enthusiasm for it in Albany despite a poll last year showing that about 60% of New Yorkers want such a law.
One of the most vocal opponents is the Catholic Church. Two years ago the Vatican declared MAID “intrinsically evil.” Those who profess to believe in the “sanctity of life” claim that “suicide” is not just wrong but is an attack on God. However, as Schwarz explained, MAID is not suicide. “We do not support suicide,” she said.
There is a key distinction: terminally ill patients who choose MAID would most likely prefer to go on living their lives, but they can’t do that because they are dying, while those who commit suicide have the option to live, but choose not to.
Asked what she tells those who contact her, Schwarz says: “The only option that I can talk to patients about is the only legal action that exists in New York State, which is VSED” — voluntarily stopping eating and drinking — which is legal everywhere in the U.S. for those who are “decisionally capable.” Another legal way to hasten death is stopping life-sustaining medical devices and medicine, but that applies to only a very small number of patients, she says.
“VSED is nobody’s first choice,” she adds. “Nobody is happy to hear about VSED as an option, but it’s not my job to try to talk you into it. I’m happy to discuss it with you if you’d like to hear about it.”
As far as who is reaching out to her these days, lately it’s been “just folks calling up and saying, ‘I’m done, what can I do?’” she says. “So we enter into a dialogue. Everybody wants a magic purple pill. All I try to do is explain what their options are and what needs to be in place for them to be successful.” They call and email from all over the country. When Schwarz was working with the national organization Compassion and Choices, she received a lot of queries from terminally ill patients like my mother, but in more recent years they haven’t been getting in touch and she can’t explain why.
Schwarz, who has lived on the Upper West Side for over 50 years and enjoys walking her dogs in Riverside Park, began her career working as a nurse in intensive care units where she saw a lot of suffering. Then she went back to school in the mid-1980s and studied bioethics and philosophy. She got a master’s and began writing about ethics, advanced directives and the culture of medicine. A turning point came when a close friend, who was dying of ovarian cancer, was ready to end things and wanted help navigating that, but Schwarz didn’t yet know the best practices for guiding that process and her friend’s effort got messy and distressing. “For me it was truly a life-altering experience,” she says. “It was terrifying.” And this made her wonder how nurses responded when patients wanted help in dying. So she decided to get a PhD in nursing at NYU, researching this fraught subject that nobody wanted to talk about.
As for the future of MAID, Schwarz does not see a federal MAID law passing in the foreseeable future (as one did in Canada six years ago). Instead, more states will likely pass these laws, but in the current political climate, many others will not.
One possible loophole for people who live in states that do not offer MAID is to go to Oregon, which earlier this year legalized MAID for out-of-state terminally ill patients. However, Schwarz cautions, how that plays out remains to be seen, because these patients still have to go to Oregon and find a physician who is willing to give them the prescription. “It’s not a good workaround,” she says. “It’s more complicated than just showing up.”
For now, she does her part to correct misinformation and inform the public that VSED is a viable option, even though it may go against the beliefs and experience of some hospice nurses. “I can’t tell you how many times I’ve had patients tell me that their hospice nurse has never worked with anyone who has chosen VSED,” she says. “They need to know that it’s legal and they’re not going to get into trouble. People have been doing this for thousands of years.”
Email Judith Schwarz at email@example.com or call End of Life Choices New York at 212-726-2010.