A Long Road to Relief

Maia Calloway watched the New Mexico Senate vote on March 15 from the rocking chair in her living room, surrounded by books on art and anthropology. A longtime advocate for expanding the legal options for people facing the horrors of a terminal illness, Calloway had waited years for changes to the laws of New Mexico.

She was thrilled when the vote on the Elizabeth Whitefield End-of-Life Options Act settled at 24-17, in favor, all but ensuring freedom at the end would become law. Gov. Michelle Lujan Grisham has indicated that she will sign the bill.

Calloway, 43, has shared her story over and over in the hope of seeing medical aid in dying become available in New Mexico.

Her long fight has paralleled efforts by advocates in the Legislature and the courts to combat loaded rhetoric and unfounded fears about aid in dying and urges New Mexico to join the nine other states that allow the practice.

The Elizabeth Whitefield End-of-Life Options Act, named after a well-loved Albuquerque judge who died of cancer, gives adults diagnosed with terminal illnesses and less than six months to live the option to voluntarily self-administer legally prescribed medication in order to die peacefully and without pain. That's it. The law is not a secret back door to a dark conspiracy to methodically kill off the marginalized and depressed for the benefit of their greedy families, as opponents have said.

It's an option Calloway wants for herself.

One day she was an aspiring documentary filmmaker editing Project Runway footage at midnight. The next day she was diagnosed with a rapidly advancing neurodegenerative disease, secondary progressive multiple sclerosis.

The progression of her illness is inevitable, halting and unpredictable. Unless she dies first, it will confine her to her bed, likely unable to swallow or have clear thoughts. Calloway would rather die.

Disease can target anyone. We are powerless to protect ourselves from it. But, Calloway insists, while disease might be arbitrary, human choices are not. No one has the right to make her suffer because of their beliefs. It's her body. It's her life. She should get to decide when she's had enough.

"Ultimately this is a human rights issue," Calloway says.

New Mexico has wrestled with aid in dying for decades. With reform at last on the doorstep, SFR checks in on the legislative and judicial history of the issue, fears of coercion, misuse and bullying by insurance companies that have persisted into 2021 and how the new law could change health care in New Mexico.

For Maia Calloway, the Legislature's long-awaited action marks significant progress—though, because of the bill's restrictions, it won't broaden her own range of choices.

Twenty-five years in the making

Assisting suicide was and remains a crime in New Mexico.

Still, there are occasions when it is legal for doctors to hasten death. They can withdraw life-sustaining treatment at the request of a patient or administer high doses of pain medication to a dying patient. These practices are relatively uncontroversial, and doctors who give such care in New Mexico are protected by two 1978 laws.

Oregon voters felt that doctors should be free to follow the wishes of their terminally ill patients, even to a hastened death. They codified that sentiment with the 1994 Death With Dignity Act, a ballot initiative packed with provisions to prevent abuse.

The next year Sen. Liz Stefanics, D-Santa Fe, who is also a co-sponsor of this year's legislation, introduced a bill proposing to legalize medical aid in dying in New Mexico. Fourteen years later, in 2009, Rep. Karen Giannini's similar proposal didn't make it out of committee.

The push for progress seemed stuck.

Dr. Katherine Morris and Dr. Aroop Mangalik wished to be able to offer aid in dying to their patients with terminal cancer. They filed a lawsuit in 2012 to argue that the law prohibiting assisted suicide didn't apply to physicians writing lethal prescriptions requested by terminally ill patients and that if it did, it would be unconstitutional.

Morris had prescribed lethal medication to two patients in Oregon while practicing there and testified that they "expressed a feeling of peace that they had this option, and it seemed to relieve some of their suffering that was related directly to the loss of control over their own bodies."

Morris and Magalik were later joined in the suit by Aja Riggs, who was then receiving treatment for uterine cancer.

In a 2012 interview with the American Civil Liberties Union, Riggs said, "I have a good life and I want to keep living. But if the cancer is going to kill me, I want the peace of mind of knowing that I have some choice at the very end."

The judicial process was a roller coaster.

In a landmark January 2014 ruling, Second Judicial District Judge Nan Nash wrote, "This court cannot envision a right more fundamental, more private or more integral to the liberty, safety and happiness of a New Mexican than the right of a competent, terminally ill patient to choose aid in dying."

Briefly, Riggs believed that when the cancer returned, which she expected, aid in dying would be an option for her.

The local DA appealed the ruling, citing concerns that if aid in dying was recognized as a fundamental right, it would apply to everyone, even those who could not take the medication themselves. Furthermore, people would be able to request it in advanced directives, just as they can refuse medical intervention in such directives.

A divided Court of Appeals reversed Nash's ruling in 2015.

The plaintiffs appealed to the New Mexico Supreme Court, which sided with the Appeals Court in 2016. The high court said the issue should be settled by the Legislature.

Though none of the legal arguments presented challenged the realities of regulated medical aid in dying, the ruling was a major blow. And even as reform gained new life in the form of legislation, there are plenty who still strongly oppose the practice.

Fear of coercion and misuse

The Catholic Church has been among the most vocal opponents of medical aid in dying around the world. Archbishop John C. Wester of Santa Fe said in a March 3 statement, "God's law calls us all to recognize and protect the life and dignity of each and every human being, especially the most vulnerable."

Sen. Gregg Schmedes, R-Tijeras, is quoted by the New Mexico Alliance for Life expressing a similar fear: "Patients will feel pressured to opt out of life-saving care by insurance companies as a cost-control measure."

These fears are not supported by evidence.

In the US, there has not been a single reported case of a person receiving and self-administering aid in dying medication under coercion.

There has been no documented coercion by insurance companies. Further-more, poverty does not increase the chance that a person will ask for aid in dying.

An analysis in the journal JAMA Network Open of patients who have requested aid in dying in Oregon and Washington shows that "most patients in both states were insured, non-Hispanic white individuals with some level of college education," most dying of cancer and over the age of 65.

Loss of autonomy (87.4%), impaired quality of life (86.1%) and loss of dignity (68.6%) were the reasons most commonly cited for requesting aid in dying.

Other options

Locked in the shed outside Maia Calloway's Taos home is a Veloped, a sort of four-wheel-drive of walkers. When it's not too muddy or too icy, she takes it out and walks a slow loop around her house with Bella, an aging wolfhound who ignores most commands but always arrives home just before Calloway.

The way is hilly, the surfaces uneven. The giant wheels of the Veloped are reminiscent of a fat-tire mountain bike, able to press on without getting stuck in the tire ruts and potholes. Calloway's gait changes from week to week. Some days the partial paralysis from the MS lesions on her spine is worse, and one leg follows a bit behind. Other days her gait is more regular, but one can still feel the care she takes with each step.

Calloway fears loss of autonomy above all else. She wants to be able to think her own thoughts, and to have the power to bring those thoughts into the world through her words and actions.

While walking, she often speaks of things other than death and disease. Her father. Her mother and sister, both gone now. Movies. Spirituality. The adventures of living in LA and New York City. What different Law and Order actors were like on set. How on Earth one is supposed to order quality clothes online.

Back at the house, talk frequently returns to her most pressing dilemma. Calloway wants to die on her own terms, at home. Without access to aid in dying, the possibilities are gruesome.

International organizations and books detail the pros and cons of every known way to end one's life. The list for every method is heavy on the cons.

Most are violent, traumatic for the one who dies and for anyone who might discover them. Unregulated medications aren't always lethal and often aren't painless. Gases like carbon monoxide endanger other people.

Even the least horrifying option is still horrifying. No human being should feel compelled to end their life with a turkey roasting bag filled with nitrogen fastened over their head.

To Calloway, these ideas are intolerable.

Shifting public opinion

In the 24 years since the Oregon law was first enacted in 1997, American public support for aid in dying has increased. The most recent Gallup poll, conducted in May 2020, shows that 74% of Americans now support aid in dying—up from 68% in May 2019.

That spike is likely due to exposure to the dying process.

Over the last century, death migrated from the home to the hospital. In the early 20th century, four out of five deaths took place in the home. That statistic has now reversed: 80% of Americans die in hospitals or long-term care facilities.

The pandemic has placed death and dying at the forefront of people's minds. According to a November 2020 poll by the Pew Research Center, 54% of Americans know someone who was hospitalized or died from COVID-19. An Axios-Ipsos poll reports that one in three Americans personally know someone who died of COVID-19.

Overwhelmingly, people want their end-of-life options to include aid in dying. New Mexico is set to become the 10th state to reflect that sentiment with law.

The Legislature takes a stand

When the state Supreme Court refused to recognize aid in dying as a fundamental right, the issue was returned to the legislative branch. Lawmakers filed bills in 2017, 2019 and 2021.

Calloway testified in support of the bills in person in 2017 and 2019 and by Zoom this year.

In 2017, retired Judge Whitefield told the Legislature, "Cancer has stolen everything from me." That included her 30-year career as a lawyer and then a judge. She was one of the co-founders of the New Mexico Women's Bar Association and won numerous community service awards.

"I implore you to give me the choice that is right for me," she said. The bill was voted down on the Senate floor, 20 to 22.

Whitefield died in 2018. When a version of the bill was introduced in 2019, it bore her name, as does the recently passed 2021 measure.

Co-sponsor Rep. Debbie Armstrong, D-Albuquerque, told SFR in a telephone interview in January that the legislation is intended to provide access to "a peaceful and dignified death," and to grant the relief that comes from "knowing you can have your family and loved ones with you."

Her daughter, Erin Armstrong, was diagnosed with an inoperable brain tumor as a teenager and was almost 40 when she told the House Health and Human Services Committee that she wants the option to choose "loving goodbyes and memories shared with loved ones" rather than "disorientation and wrenching pain."

During her 45-year career in health care, Rep. Armstrong has seen firsthand the anxiety terminal patients experience when faced with the prospect of unmanageable suffering and loss of autonomy. She wished to ensure that New Mexicans, and especially her daughter, could have the "dignity of living the end of life."

What does the law actually say?

Impassioned rhetoric by some opponents of aid in dying has created fear and confusion. There are decades of data that point in the other direction.

No one is required to request or to provide aid in dying under the End-of-Life Options Act.

Patients have a right to know what their options are and which providers offer which forms of care.

Hospices and other facilities and providers offering end-of-life care are required to inform patients of all their legal treatment options, including not only aid in dying but also palliative care, but no facility, provider or pharmacist is required to provide aid in dying.

If they choose to prohibit it, they must clearly inform prospective patients of that choice on their websites and in any relevant printed material.

Providers, facilities and pharmacists who choose not to participate in aid in dying, no matter the reason, must refer their patients to providers who will or agencies that can help them find providers who will, and to transfer medical records upon request.

Organizations cannot compel a health care provider to participate or punish them for not participating. They can restrict clinicians from providing aid in dying in their roles within the organization, but not where the provider acts on their own time and outside of the "course and scope of the provider's affiliation with the sanctioning health care entity."

A significant percentage of primary care clinicians in New Mexico are advanced practice nurses and physician assistants who have extensive prescribing rights in other areas of medicine. In order to avoid effectively excluding patients in frontier counties, medical doctors, osteopathic doctors, advanced practice nurses and physician assistants are all legally allowed to prescribe aid in dying medication.

No clinician may do so alone, however.

Two clinicians must confirm the terminal diagnosis, and the prescribing provider must verify that the patient is mentally capable and is freely and voluntarily making the request.

When there's any doubt as to the patient's mental capacity or mental health, a mental health care professional must evaluate the patient. Only if they are found to be mentally capable and free of any mental health condition that might influence their decision-making regarding the act of taking life-ending medication can the prescription go forward.

No one will get a prescription after "having a bad day," or even a series of bad days. Even after a patient's eligibility is verified, there is a waiting period to fill the prescription.

In other states, the waiting period is too long. Many people die during the 15 days between their second request and when the prescription is filled. In light of that problem, New Mexico has a 48-hour waiting period, which can be waived.

The law applies to all residents of New Mexico, regardless of how long they have lived here. The vagueness of "resident" is intentional. Yes, some people might move here to access aid in dying from states where it is forbidden; it also accommodates residents who live off the grid without tax returns or driver's licenses.

Under the new bill, assisting suicide remains a fourth-degree felony, but attending an aid in dying death is legally protected. Family, friends and caregivers can gather to support a dying loved one using the law without fear of prosecution.

The bill stipulates that "actions taken in accordance with the End-of-Life Options Act shall not be construed, for any purpose, to constitute suicide, assisted suicide, euthanasia, mercy killing, homicide or adult abuse under the law."

"For any purpose" includes the nullification of insurance policies, wills and other legal contracts.

No one ever has to use aid in dying—not even after they fill the prescription.

A journal of the American Medical Association studied use patterns of aid in dying over 18 years in Oregon, the US state where it has been legal the longest. Between 1998 and 2015, 1,545 people received prescriptions for lethal doses of medication under the Death with Dignity Act. Of those, 991 had used it, while over a third—554—did not. Similar statistics have been seen in other states that allow aid in dying.

For many patients, the main issue is peace of mind. As Riggs put it, "I understand people can't really know how they'll feel until they actually get there. So I don't know for sure how I will feel as I get closer to death. But I do know I want to have the choice."

Five Minutes before Midnight

After watching the Senate vote, Calloway's elation quickly progressed to a more complicated experience. Even when the End-of-Life Options Act becomes law in June, Calloway and others with degenerative neurological illnesses like amyotrophic lateral sclerosis (ALS), dementia and Alzheimer's disease will not be eligible to use it.

Doctors can't reasonably predict how much time she has left. By the time Calloway is six months from her death from MS, she expects to be either physically unable to take the medication herself or mentally unable to request it.

In other countries, including Switzerland, the Netherlands and Canada, a mentally competent person can qualify for aid in dying on the basis of suffering alone, regardless of whether they have a terminal illness. Of these countries, only Switzerland extends the option for voluntary assisted death to non-citizens.

To be approved for voluntary assisted death at Pegosos Association in Switzerland, Calloway has undergone the extensive review of her medical records and the psychiatric evaluations. It's a process she has to repeat every six months until she leaves.

She's waiting as long as she can.

Like others who are faced with losing their cognitive abilities or the voluntary use of their bodies, the question of when to go to Pegosos is fraught. Such patients say they want to go at "five minutes before midnight," the last moment they possibly can before they lose the ability to make the choice.

When the day comes, she will be in a foreign country instead of at home. "How jarring is that?" she asks. "The only good thing about it is I know them really well and they're amazing people, amazing compassionate doctors and activists."

When asked if she was afraid, Calloway says: “When we die, that’s the death of our ignorance…Our true reality is something that survives the body.”