(Anita Hannig is a cultural anthropologist, death educator, and the author of The Day I Die: The Untold Story of Assisted Dying in America, a finalist for the Oregon Book Awards. She has written for the PBS series Dead and Buried and for The Seattle Times, Cognoscenti, and Undark Magazine. This article originally appeared online at https://www.newsweek.com/case-assisted-dying-opinion-1869491 and is used with permission of the author.)
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At a time when the idea of bodily autonomy is being challenged across the United States, right-to-die legislation keeps gathering momentum. To date, 10 states and Washington D.C. have authorized medical aid in dying (MAiD), enabling terminally ill, mentally competent patients to end their life by ingesting a lethal dose of medication.
That means one in five Americans now has legal access to an assisted death.
From Arizona to Wisconsin, 20 states this year considered bills to permit MAiD. The Virginia Senate passed a bill that would authorize assisted dying in the Commonwealth and went to the House. In Illinois, legislators filed a similar measure. Local residents are flocking to public hearings across the country to debate one of the most stirring issues of our time.
Last year, Oregon and Vermont formally removed their statutes’ residency requirements, for the first time allowing any American with the means to travel to pursue an assisted death. (The reality of trucking to a distant state while you are terribly ill is a different story – but much better than flying to Switzerland.)
But even as more states consider legislation that supports and enhances the practice, confusion and hurdles remain. The US has the most restrictive assisted-dying laws in the world. These laws often stifle patients who are either too sick, or not sick enough, to qualify for a prescription.
To be eligible for MAiD, a patient must have a prognosis of six months or less to live, which excludes patients with painful and protracted – but not immediately fatal – conditions like Multiple Sclerosis. Patients must be capable of administering their own deaths, either by swallowing the lethal medications or pushing them through a feeding tube or rectal catheter.
Initially intended as a key safeguard of these laws, this single requirement has severely constrained the choices of patients with advanced neurodegenerative diseases like ALS. Once they lose the ability to swallow or use their hands, such patients may become incapable of self-administering the lethal dose. And, unlike right-to-die laws in other countries, the US statutes draw a sharp line between physical and psychological suffering, barring patients with a mental health condition from accessing an assisted death.
Other barriers abound. Twenty-seven years after Oregon enacted the country’s first assisted-dying law, some patients continue to embark on a wild goose chase to find a physician willing to see them – especially in rural parts of the country where Catholic health systems run the only hospital in town. Some pharmacies and hospice agencies refuse to cooperate with a patient’s wish for an assisted death, leading patients to feel shamed and abandoned.
Punitive, archaic language that lumps an assisted death together with suicide adds a layer of anguish for those who have made the complicated decision to hasten the end of their life.
Yet, despite the roadblocks many patients must contend with – while their health is rapidly declining – there is a reason they persist. For many, an assisted death restores a sense of agency in a situation that made them feel trapped and powerless.
During the five years I spent shadowing those on the frontlines of assisted dying in the US, I was struck by the comfort patients derived from securing a script for life-ending medication – even if they never ended up using it (a third of all patients don’t). Most had exhausted all their treatment options, and their physical and emotional suffering had all but withered their desire to live.
Knowing they had a backup if things took an unexpected turn offered these patients great relief. That didn’t mean they saw life as expendable.
During my work, I found that the ability to direct your own death could be very empowering – for the dying and those who remained behind. Deciding the time and place for their death allowed patients to escape the capriciousness of their illness and return themselves to the driver’s seat. In preparing for their impending departure, they often reached closure with loves ones, who didn’t feel as blindsided by their loss. Compelled to confront the hard truth of their mortality, some patients were able to live out their remaining days with renewed purpose.
As a society, we must ensure that assisted dying continues to be driven by the needs of terminally ill patients and that it remains just one of many ways to have a humane, dignified death. Yet, as the population ages, many more people will confront diseases that don’t respond to treatment and that are daunting and terrifying in their course. Those who lack the desire to run the full gamut of their disease – who see no redeeming value in their suffering – should have the option to end their life.
Because it is just that: an option, not a mandate.
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Final Exit Network (FEN) is a network of dedicated professionals and caring, trained volunteers who support mentally competent adults as they navigate their end-of-life journey. Established in 2004, FEN seeks to educate qualified individuals in practical, peaceful ways to end their lives, offer a compassionate bedside presence and defend a person’s right to choose. For more information, go to www.finalexitnetwork.org.
Payments and donations are tax deductible to the full extent allowed by law. Final Exit Network is a 501(c)3 nonprofit organization.
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