The same year that my parents died, my sister, Julie, then 55, was diagnosed with advanced ovarian cancer. Five years and three recurrences later, she’d exhausted all viable treatment options. At that point, she’d undergone one nine-hour surgery, six courses of chemotherapy and had joined two clinical trials. Like my parents’ physicians had done, Julie’s doctor eventually recommended palliative care, with at-home hospice, to keep her comfortable during her last months.
Julie had seen our parents go through end-of-life challenges and didn’t want the same for herself. She and her wife researched medical aid in dying, or MAID, and had taken the steps New Jersey law requires to use this option.
But was I ready?
As a journalist, I’d previously written about end-of-life legislation, first enacted in Oregon in 1994, which allows terminally ill people to ingest prescribed life-ending medications. When Julie, 61, chose it in 2023, MAID was legal in 10 states and the District of Columbia, including California, Colorado, Delaware, Hawaii, Maine, Montana, New Jersey, New Mexico, Oregon, Vermont and Washington state. This month, New York became the 13th such state, with Illinois to follow in September. At that point, just under one-third of Americans will live in a “right-to-die” state or region. Oregon, Vermont and Montana no longer have residency requirements, which means people who are deemed eligible can now exercise this choice by traveling to one of those states. (And some accommodations are made available specifically for terminally ill people and their families who are making this journey, like the Sanctuary in southern Vermont.)
Approaching MAID as a journalist, I had questions: How is eligibility determined, what are the safeguards, does it always work, is a health care professional involved and many others. As a brother, however, I was conflicted and confused, and my questions felt more urgent and personal. Would she be in pain? How fast was the process? What would it be like for us to witness Julie’s death? Above all, I struggled with my impending loss: How could my sister leave this precious life even one minute before she had to?
My sister made things easier for me. Since her diagnosis, Julie had been a member of an online ovarian cancer support group and had witnessed the deaths of several women in her group. She told me, “I do not want to die like that,” and in her final weeks I knew she was in pain, despite the morphine and fentanyl. I began not only to understand but also to fully accept why she had decided MAID was right for her.
As desperately as I would miss Jules, who’d been my partner in crime since she could talk and walk, I understood and accepted it when she told me, “My body, my choice.”
Who is eligible for medical aid in dying
With the advantage of hindsight, I wish I’d known more about how the whole process works before my sister’s death, or pushed harder to get the answers to questions that I had. But it’s hard to talk about death and dying. I had learned that while there’s no federal statute that regulates medical aid in dying, laws from Oregon to Vermont pretty much share the same criteria for eligibility and the safeguards that are put in place to protect people who choose this option.
To be eligible, a person must be an adult 18 or older with a terminal illness and a prognosis of six months or less to live, said Diane Button, author of “What Matters Most: Lessons the Dying Teach Us About Living,” founder of the Bay Area End-of-Life Doula Alliance in Northern California and a doula herself. They must “have the capacity to communicate their health care decisions to two physicians, make a voluntary request for the medication and be physically capable of self-administering it when the time comes,” she told me.
In the United States, unlike Canada, the power to decide when enough is enough rests solely with the individual, not their physician. “This puts the decision-making process in the hands of the terminally ill individual,” said Kevin Díaz, the president and CEO of Compassion & Choices, an advocacy organization.
He and Button both emphasized that the individual must be able to ingest the medicine entirely on their own.
What I wish I had known about medical aid in dying
Still, I had blind spots in what I knew; more information might have helped ease being with Julie that day when our entire family gathered one last time on June 30, 2023, as she drank the “end-of-life cocktail.”
For instance, we’d been told that no health or hospice aide could be in the house when my sister ingested the medicines; that’s why Julie’s wife and two adult daughters took charge. They’d read the instructions on preparing the mixture, including masking the medicine’s bitter taste by mixing it with apple juice or a sports drink (but not orange or grapefruit juice, because acidic drinks affect drug absorption). They knew how long to keep Julie upright to prevent vomiting and when and how to position her comfortably on her side.
In fact, no state prohibits a health care provider, hospice aide or an end-of-life doula (a nonmedical companion for the dying) from being present — as long as they don’t actually administer the medicine. The presence of an experienced hand would have lessened our anxiety on a day already freighted with worry. Button, the doula, said their role is “to offer a steady, experienced, gentle presence at a time when people may feel emotional, afraid and overwhelmed.” To be honest, I wish we’d had one.
Individual hospices may, however, set their own restrictions on staff being present at the time of ingestion, Díaz said. If that’s the case, aid-in-dying experts advise that you try seeking another hospice organization that does allow it.
Similarly, no physician is required to participate in aid in dying, but the statutes do require them to let patients know it’s an option (when it’s legal).
“There are still quite a few primary care physicians who won’t even talk about it with their patients because they don’t believe in it, often because of strong religious convictions,” said Colette Kirchhoff, a clinical associate professor at the University of Washington and a family, hospice and palliative care physician in Montana.
She added that “there are still people, even in our state where it’s been legal since 2009, [who] do not know that aid in dying is a choice.”
If individuals need additional resources to find a supportive doctor, Kirchhoff recommends Compassion & Choices and the Academy of Aid-in-Dying Medicine, a resource for those considering medical aid in dying.
Even when deemed eligible, people may find the necessary prescriptions to be harder to procure than you might think. First, the medications — which include digoxin, diazepam, morphine, amitriptyline and phenobarbital — are expensive, generally totaling between $350 and $900 and not covered by most insurance plans. (Only California, Hawaii, New Mexico and Oregon authorize the use of the state-funded share of Medicaid dollars to cover MAID.)
Pharmacists, meanwhile, are not required to fill these scripts, which can make obtaining them tricky. In Vermont, for example, there are only two pharmacies that prescribe the medicines.
What happens to the body during medical aid in dying
As much as I’d thought I’d done the research to prepare myself for that final act, I wish I’d known more about how we die during MAID. I understood that once Julie swallowed the two-ounce cocktail, she’d be quickly unconscious. The high-dose sedatives that put you to sleep are fast-acting.
Kirchhoff said a patient usually loses consciousness within two to five minutes, although some take a bit longer. Then, she explained, “they are just lying in bed until their breathing or their heart stops.”
But I thought Julie’s death would come quickly. According to a 2024 Oregon report, 62 percent of patients died within an hour of taking the medicine, with a median time of 53 minutes. I knew it wasn’t uncommon to take one and a half to two hours, but I had no idea that some individuals could live from 12 to 24 hours after ingestion.
Julie’s breathing and heart did not stop for more than five hours, which was excruciating, leaving us to fear, “Will it actually work?” “Could she possibly wake up?” Kirchhoff emphasized to me that the medicines always result in death and that patients do not regain consciousness. Ironically, after not wanting her to die, I found myself hoping that the process could be hastened.
Just before 6 p.m. on that June day, my sister took her last breath. I was relieved to know she was free of suffering, that she’d been able to decide for herself when enough was enough.
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