USA

Denying Patients Physician-Assisted Suicide Is a Civil Rights Issue

It shouldn’t be a crime for those who are too sick to live to decide how and when to end their suffering.


BY SHELBY WILDER
JUNE 23, 2022

Maia Calloway welcomes me into her home in Taos, New Mexico. It’s a warm and calming space surrounded by high desert. Calloway was first diagnosed with multiple sclerosis (MS) at age thirty-three. In the nine years since then, she has experienced a steep decline, suffering from paralysis throughout parts of her body, debilitating episodes of pain, and cognitive and physical impairment. She needs full-time care.

Despite these challenges, Calloway has “stuck around” to speak out about one’s right to die and to educate people on the law in the United States. She believes that there is no better proponent for this case because, like many in her situation, she wants to end her own life.

Throughout her journey with MS, Calloway has desperately desired to leave her body, something that has robbed her of so much in recent years. “I would love to live,” she says. “But I can’t, because my level of disability is not acceptable for me; it’s not being true to myself. I have really lost a lot of who I was.”

Medical aid in dying, or MAID, which is legal in only a handful of states, allows doctors to prescribe lethal medication to terminally ill patients with less than six months to live. But even for those who try to legally end their life, like Calloway, many obstacles remain. The existing legislation specifically excludes individuals with degenerative diseases such as Alzheimer’s, Parkinson’s, ALS/MND, and MS from qualifying for MAID.

While the campaign for MAID gains momentum across the country, it continues to work against some of the people who need it most. “The biggest part of my activism has been the realization that the right to die is as important as the right to live, that it’s a human rights issue,” Calloway says. “It’s a civil rights issue. It’s not a medical or moral issue.”

Calloway has tirelessly advocated for MAID, asking lawmakers to consider adding more compassionate expansions to existing legislation.

“We just need to look at countries that have experience with euthanasia,” she says. “We can look to models in Europe or Canada and see the success that they are having. Individuals should be assessed on a case-by-case basis.”

Last summer, New Mexico legalized MAID by passing HB 47, but it unfortunately does not pertain to Calloway’s case. Even though her medical diagnosis is incurable and debilitating, she is not considered “terminally ill” and is, as a result, not approved to receive the medication. “The irony is that if I waited until they deemed me ill enough,” she adds, “I still could not access MAID because I would not be able to swallow the drug on my own.”

In the final stages of MS, patients are bed-bound, often unable to move, and eventually unable to breathe, making it impossible to meet the law’s requirement that patients must be able to independently take the lethal medication.

Falling through the cracks of the law, Calloway spends most days in bed, her laptop serving as a window to the world. She has witnessed a growing underground movement of activists calling for “exit,” as it’s called online, among communities of people in chat rooms where many are trying to find ways to die.

Falling through the cracks of the law, Calloway spends most days in bed, her laptop serving as a window to the world.

From individuals documenting their travels to South American pet stores to buy Nembutal, a barbiturate that can cause death; to sharing home videos of people experimenting with pig salts they ordered online; to those offering DIY methods for death, like using a makeshift plastic bag, “People will go to extreme lengths to be able to end their suffering,” Calloway says. “We are forcing Americans to commit a hard suicide. And it doesn’t always work out.”

The discussion on MAID in the United States has been documented from various angles, but most people with degenerative diseases find themselves facing the same situation as Calloway: being denied the right to end their own lives in the manner of their choosing, a right that seems largely ignored or dismissed.

Right-to-die organizations often focus on legalizing MAID in other states over expanding existing laws, fearing that widening access will slow or completely stall the movement’s progress by sparking pushback claiming that these laws go too far. Such opposition typically consists of disability rights organizations and religious groups. “There is this irrational idea that all of a sudden we are going to have slippery slopes and people are going to be taken advantage of and coerced,” Calloway says. “These are scare tactics by the right-to-lifers.”

As Calloway notes, individuals seeking to use the law must pass a medical review board, a rigorous process that has many failsafes in place. This process cannot be easily completed, at least not in the United States, where many individuals die while waiting on the bureaucratic process for approval.

Due to her lack of legal options, Calloway plans to travel to Switzerland in the coming months; there, the criteria for assisted suicide are much broader.

“Patients from all over the world are traveling to countries that provide [assisted suicide or] euthanasia in order to have this option,” she says, “because many of them are denied this right in their own country, which is the same problem that I have.” Once she arrives at Pegasus, a nonprofit voluntary-assisted-dying organization, she will take a lethal intravenous substance and pass away within two minutes.

While she emphasizes how that moment will finally bring her the peace she seeks, Calloway understands that it does not come without financial and emotional hurdles.

Calloway must pay nearly $20,000 for travel and accommodation for herself and a caretaker.

Calloway must pay nearly $20,000 for travel and accommodation for herself and a caretaker. To help raise funds, she started a GoFundMe page titled “A good death.” But, while Calloway has raised more than $7,000 so far, the fact that she needs to travel to a clinic abroad in order to die humanely is an indictment in itself.

“I can’t die in my own bed with my family holding me,” she says, “because the law in America is so cruel.”

Worse still, the window of time for Calloway to travel to Switzerland is narrowing. As her mental and physical states decline, Swiss doctors must be able to certify that she’s cognizant before she can be approved for physician-assisted suicide.

“Choosing a date to die is the most difficult thing that any human being could ever have to choose,” she says. “There would always be another birthday, there would always be another family get-together. You [instinctively] keep delaying this decision but I have to make it soon if I want to have a dignified end.”

“MS is ending my life,” Calloway continues. “I’m just choosing to die one way as opposed to another on my own terms, with assistance from a doctor.”