It’s getting easier for terminally ill people to end their own lives. What to know as laws change

“Many people call us and say they were just diagnosed with a terminal illness and want to know more about [the new law],” said Zucker, executive director of End of Life Choices New York, a nonprofit education and support group. “They are telling us their doctor is not interested in MAID, so they’re trying to find a capable, available doctor” who’s familiar with end-of-life options and willing to participate in the MAID process.

Since Oregon passed a MAID ballot measure in 1994, a steady stream of states and the District of Columbia have followed. As people live longer with chronic, terminal diseases, there’s more interest in exploring a peaceful, self-administered death.

‘It’s so much easier to do this type of planning before you get a terminal diagnosis. It’s true that your whole philosophy can change if you get a diagnosis, but your core values rarely change over time.’ — Peg Sandeen, CEO of Death with Dignity

While state laws vary, patients age 18 and older must meet three qualifications to pursue MAID: They must be terminally ill with a prognosis of six months or less to live; mentally capable of making their own decisions; and able to take the medication entirely on their own.

Because of all the safeguards built into the process — including getting doctors and a psychologist to attest to your affirmative, informed desire to end your life — it can take months to lay the groundwork. Acting impulsively is impossible. 

“You don’t just go somewhere and get a prescription and put it in your cabinet,” said Nancy Berlinger, senior research scholar at the Hastings Center for Bioethics in Garrison, N.Y. 

This raises a momentous question: If diagnosed with a terminal illness, how can you weigh the decision in a calm, unhurried, fully informed manner?

Patients with advanced cancer or amyotrophic lateral sclerosis (ALS) typically enroll in hospice and know their time is near. After squeezing as much joy as they can from the last stage of life, they may choose MAID — or at least ready themselves for it. Many more people get qualified and obtain the prescription than actually take it.

For others, the decision is trickier.

Take someone with a brain-cancer diagnosis who remains relatively symptom-free. He knows he will die in the coming months, but still feels physically fit — yet he lives with the knowledge that his condition can worsen in a flash. Intense pain would become his new normal, and he could lose the ability to self-administer an end-of-life drug.

Or take the more common example of early- to midstage dementia patients. They know their cognition will continue to fade, and they might live for years in an agitated, delusional state where they’ll need round-the-clock care from people they don’t recognize. 

“You have to be willing to sit down with yourself and your family and be prepared to talk about what you’re willing to do and not willing to do,” Amy Bloom, a psychotherapist and the author of “In Love,” a memoir about her husband’s end-of-life decision, said in an interview. 

Most people with dementia cannot participate in MAID because by the time they’re ready to end their life, they no longer qualify: They cannot take the drug unassisted or demonstrate that they are mentally able to make their own healthcare decisions. 

Soon after his dementia diagnosis in 2019, Bloom’s 66-year-old husband, Brian Ameche, expressed his wishes clearly. He didn’t want to wait until he lost his autonomy and his decision-making ability. 

“You have to leave before you want to, or you don’t get to leave at all,” he told his wife. They traveled to Zurich, Switzerland, where they enlisted Dignitas, a Swiss nonprofit, to help Brian achieve a painless death.

When my 67-year-old mother received her dementia diagnosis, she wanted to end her life before the disease robbed her of her volition. But she declined unusually fast and lost that opportunity.

“Choosing to die and being able to act independently while terminally ill is a deliberately narrow opening,” Bloom writes in “In Love.” “Many people can’t get through it. They can’t swallow well enough. They can’t talk well enough. They can’t hold the glass or mix the drink on their own.” 

It takes a certain kind of person to tackle end-of-life decision-making with clarity and diligence. Many prefer to adopt a passive attitude (“I’ll let nature take its course”) or an aggressive stance (“I’m a fighter. I won’t let this thing beat me”).

Religious or spiritual beliefs can also influence one’s reaction to a devastating diagnosis. 

Those who are open to MAID share common traits, says Peg Sandeen, the CEO of Death with Dignity, a nonprofit advocacy organization in Portland, Ore.

“They tend to want to control the [dying] process,” she said. “They also understand mortality and are clearheaded about their diagnosis. Many have experience with death and dying” after watching a loved one decline. 

“How we live is how we die,” Sandeen added. “If you’re a very thoughtful, planful person in life, you’ll approach death the same way.”

That’s why experts urge people of all ages to think ahead and ponder their end-of-life wishes while they’re still healthy. Tell your doctors, family and friends what you want to happen if you’re terminally ill — and why you want it.

“It’s so much easier to do this type of planning before you get a terminal diagnosis,” Sandeen said. “It’s true that your whole philosophy can change if you get a diagnosis, but your core values rarely change over time.”

An often overlooked aspect of MAID is how the surviving partner copes with such a loss. When you hold your loved one’s hand as they fall asleep and die right in front of you, it stays with you.

“This was a wish they had and you helped them accomplish this wish,” Bloom told me. “If this was your partner’s goal and you helped your partner achieve it, I hope you’d feel glad you helped them do what they needed to do.”