Seeking a right to medical aid in dying in Massachusetts

Nearly a dozen states, including Maine and Vermont, allow patients near their end of their life to obtain medication that would hasten their death. (Getty image)

Margaret Miley is frustrated, in pain, and dying.

But Massachusetts law says she cannot die on her own terms. The state has thus far resisted the movement, now law in nearly a dozen other states, to allow patients near their end of their life to obtain medication that would hasten their death.

“Who benefits from this?” Miley wonders, more than a decade after an ill-fated tick bite on her 50th birthday left her with painful enduring diagnoses, compounded later by lung cancer, leaving her, at 63, bedridden and unable to speak. “Why can we opt for pain avoidance for surgery but not death? Why do we have this choice for our pets but not ourselves? Massachusetts claims to be a pro-choice state. Why are we so behind other states on this?”

That may change. But only if the Legislature has the appetite to push past stigma and concern surrounding the latest end-of-life options bill before it, which would allow people with terminal diagnoses, if they choose, to take a fatal dose of medication and die in their sleep.

The idea is deeply contentious. It came before voters more than a decade ago, in 2012, when a medical-aid-in-dying ballot question was narrowly defeated. Polling over the last few years consistently finds roughly two-thirds of Bay Staters now support physician-assisted death, which is legal in 11 states and touted as a humane choice for those who face agonizing and slow roads to natural death.

Yet, each iteration of the aid-in-dying bill has faced pushback from religious organizations concerned about a slippery slope of suicide and from those who worry that it will make it easier for people who lack the funding or family support for robust end-of-life care to choose death instead.

From her home in South Acton, supported by family, Miley described over a series of email exchanges in recent weeks her health decline and decision to choose her own end-of-life timeline.

While she hopes, deeply, that lawmakers move quickly enough to let her die in her home state, she is hedging her bets with a backup plan to travel to Vermont to avail herself of its legal physician-assisted-death options if necessary.

A career-long activist and advocate, Miley’s voice comes through sharp, focused, and darkly funny in the exchanges, even through rounds of brain fog brought on by medication and pain.

“I had very lucky and privileged health and access to health care until age 50; with only minor surgeries, seasonal illnesses, and broken bones typical of an active lifestyle,” she wrote. “Because of that, I’m embarrassed to admit I had a childlike ignorance of real pain and disability. In childbirth classes, we were offered a no-pain option, leading me to incorrectly assume that modern medicine can contain pain in a hospital setting in all cases. I was sympathetic to disabled people, but I had no idea of the daily grind of it all, nor how one disability can change the life of an entire family.”

That ignorance changed in a flash. In 2011, she biked 50 miles to celebrate her 50th birthday, and at some point along the way a “blasted tiny bug gave me three illnesses in one bite and sidelined my life plans forever.”

A terrible turn

After the birthday ride, Miley contracted three debilitating diseases all caused by bites from infected ticks – Lyme, babesiosis, and ehrlichia – and never recovered, transitioning into myalgic encephalomyelitis/chronic fatigue syndrome, which are characterized by extreme exhaustion symptoms that many now associate with long Covid.

“I entered the world of disability and tried to adapt quickly, working for years remotely, before it was cool!” Miley wrote. “I grieved while I adjusted to the limitations; no more civic life nor the joys of physical exertion.”

Miley’s life before the tick bite centered on public service, tracing a career through nonprofit economic development programs, community leadership, business training and lending, a business incubator, and worker-owned companies. In 1999, she was the founding executive director of The Midas Collaborative, a statewide network of nonprofit organizations aimed at advancing the financial security of low- and moderate-income residents.

Sen. Jamie Eldridge, who grew up down the street from Miley and worked with her on many political initiatives over the years, nominated her to the Massachusetts Commission on the Status of Women’s 2017 class of Unsung Heroines, presenting her with a citation personally .

“Margaret has been one of the one of my biggest mentors for my career as a legislator,” Eldridge said, particularly on anti-poverty and asset development issues. “It’s just been so heartbreaking to see someone that was so active on state and national policy – wearing so many hats, with so many groups, to really make a difference in public policy – and now to to be in touch with her regularly and know how much pain that she’s in, and yet she cannot take advantage of an option in Massachusetts, and therefore has had to use all of her resources to consider ending her life in another state, and all the challenges that go with that.”

In the mid-2010s, some work was manageable, Miley said. The treatment options for her symptoms were frustrating, as most US medical schools do not teach about chronic fatigue syndrome – a complicated multi-system condition – and the US Centers for Disease Control and Prevention acknowledge the few programs dealing with it are often under-resourced.

But another devastating diagnosis was on the horizon. In late 2021, it came.

Lung cancer. Stage 4. Terminal.

“This was a surprise as I never smoked, nor lived in polluted areas, and lived with a gas stove for only six years,” Miley wrote. The one positive, she said, compared with the underwhelming treatment response to chronic fatigue symptoms, was that her health providers were well equipped to deal with cancer.

Radiation initially shrank the lung tumors, but before that the pain was excruciating.

“ I had a preview of what was ahead for me,” Miley wrote. “I understand, with stage 4 cancer, the treatments work until they don’t. I felt some urgency to make a plan to never experience that level of pain again.”

Between the pain, the treatments, and the exhaustion, Miley was now bedridden. Speaking is agonizing, so email and text became her social life – thankfully an active one when her mind is clear between symptoms and medication fog.

Those who oppose or are uneasy with the idea of right-to-die legislation often point to other palliative care options, like hospice, as a better route for the terminally ill.

Hospice services in Massachusetts, while “wonderful” in her limited experience, are not in the practice of offering “a quick, painless departure,” Miley wrote. And she had seen a loved one in hospice, having said repeatedly he was ready to die, linger in unconsciousness for weeks before death.

“We did mental gymnastics to try to reassure ourselves that they weren’t suffering,” she wrote. “It was traumatic for us to watch. To this day, I’m troubled by the images of his physical state in his needlessly attenuated departure.”

Coming to terms

Deciding that a life of uncontrolled pain followed by a lingering death was not how she wanted to go, Miley started to consider alternatives.

Advocates for right-to-die options push back against the characterization of the practice as “physician-assisted suicide,” which is illegal in the state. The Supreme Judicial Court, considering the question in 2022, concluded there is no right to the practice, though “competent adults who are terminally ill may elect to stop eating or drinking, may agree to the withdrawal of life support, or may choose to pursue palliative sedation.”

Miley calls the idea of allowing those options but not medical death “medieval, honestly. The body can survive days and days without food. Why can’t we use modern medicine?”

Religious opposition to the practice is straightforward.

“Physician-assisted suicide is just that: suicide,” Cardinal Seán P. O’Malley wrote in April in a Boston Globe op-ed. “And it is always tragic whether administered under a doctor’s care or self-inflicted.”

Advocates disagree with that description. In Miley’s telling, she would prefer to live her life, cancer free and unpained. But that isn’t the medical reality, and the treatment that seems most humane to her is a right to die. In her experience researching aid-in-dying and communicating with other advocates, she said, patients are not suicidal or choosing death over a full life.

Having the conversation with family about her intentions was difficult, “but we have always been direct communicators, so it was not out of the ordinary,” she said. “They saw me suffering before the tumors were shrunk. They don’t want to see that again. I recommended they get support  – including therapy – and we say what we need to each other; because when the pain comes back, I have to punch out. My family is in full support.”

Coming to the conclusion that she would prefer to self-administer medication to end her life was “sad and comforting in equal measure,” she wrote. “However, when I found out it wasn’t legal in Massachusetts despite being available in 11 other states,” she wrote in pointed understatement, “I admit to being annoyed.”

Refiled for years in the Senate by Sen. Jo Comerford and in the House by Rep. Jim O’Day, right-to-die legislation is currently pending before the Senate Ways and Means Committee. Having received the green light from both the Public Health Committee and the Health Care Financing Committee, it is the furthest the bill has ever made it on Beacon Hill.

Recent polling from the University of Massachusetts Amherst found that 44% of Massachusetts residents strongly support physician-assisted death and another 23% said they somewhat support the idea, while 11% were somewhat or strongly opposed and 22% said they neither support nor oppose it.

“In 2012, a question that would have legalized physician assisted death narrowly lost at the ballot box,” Tatishe Nteta, a professor of political science at UMass Amherst and director of the poll, said in a statement along with the poll results. Twelve years later, Nteta said, the picture is different. “With the State Legislature currently contemplating legislation that would provide this right to residents of the Bay State, it may only be a matter of time before Massachusetts becomes the [next] state to legalize physician-assisted death,” he said.

Miley is optimistic about the bill’s current run.

“Given that more than two-thirds of people favor passage, the legislators would just be doing their jobs, right?” she said about enacting the legislation. “I’m guessing a critical mass of them are Boomers and Gen Xers, and they’ve seen their elders suffer needlessly before dying. Unfortunately, some people need personal experience with policy issues in order to move them to action. Keep in mind Boomers and Gen Xers are the ones that brought us gay pride, destigmatized mental illness, and vanquished panty hose in the workplace, so we know how to end suffering,” Miley wrote, her dry sense of humor still clearly intact.

The desire to spend the remainder of her life in Massachusetts is an emotional and principled decision, for Miley, as much as it is about the sheer physical pain and difficulty of traveling out of state in her condition.

Massachusetts is her anchor. Except for brief periods out of state, she has lived only in eastern Massachusetts, growing up in Lexington and attending its public schools, earning a bachelor’s degree in economics from UMass Amherst and a master’s in community economic development from New Hampshire College.

She and her husband, Harry Shanley, moved to South Acton 32 years ago and raised their son and daughter there. Describing her neighborhood, Miley writes like the progressive advocate she’s always been, cheering the “densely built homes near the train station, park, walking trails, and good cycling roads.”

“We were looking for a ‘smart zoning’ neighborhood,” she wrote. “This one was developed in the 1860s, when they didn’t call it that, but they had the foresight to build tight, walkable communities that foster neighborliness.”

She doesn’t have a bucket list in her head, after a career following her calling of economic equity. From promoting housing cooperatives to cooperative business models and micro-enterprise, to personal finance training, to job training and policy advocacy, she tallies up her “wins.” Her one regret, she writes, is that “I wish I could be around to help put this country back together.”

Miley’s productivity mindset – which she credits to a working class upbringing shared with seven siblings – became essential to keeping morale “high enough” as she grew too ill to leave bed or receive in-person visits. It was a vicious turn of events for someone who cherished an active and social lifestyle.

When well enough, she tries to help her family and friends with research tasks.

“I’m not wired to be a lady of leisure,” she wrote. “If I can’t be helpful, I become unglued.”

The road ahead

The chief policy concern regarding right-to-die laws is potential for abuse, which is top of mind for advocates, opponents, and elected officials wrestling with the subject.

Gov. Maura Healey “supports legislative action to allow medical aid in dying, provided it includes sufficient safeguards for both patients and providers,” said spokesperson Karissa Hand.

Moral opposition tends to take the form of religious resistance to taking one’s own life – a common objection from groups like the Massachusetts Catholic Conference, the public policy and lobbying office of the state’s four Roman Catholic dioceses, and some legislators.

There is worry that people may feel compelled to seek physician-assisted death for reasons of poverty, depression, or lack of family support in their old age. Some disability advocates in Massachusetts argue that legalizing it will lead to people being pressured to or choosing to end their lives when treatment is possible, with the secular Second Thoughts Massachusetts group calling the practice “a deadly form of discrimination against disabled people.”

In his Globe op-ed, O’Malley referenced countries where medical aid in dying is allowed for reasons of mental illness, arguing that the Massachusetts bill “could lead to a slippery slope of possibilities.” He pointed to a brief 2017 report by the Bioethics Observatory at the Catholic University of Valencia, which said more than 400 mentally ill people in the Netherlands were “euthanized” without their consent among more than 7,000 “assisted suicides” from 2010 to 2015.

A 2009 analysis of two decades of euthanasia in the Netherlands in the Journal of Bioethical Inquiry addressed the circumstances of the deaths “without explicit consent,” which account for around 0.5% of all assisted death cases in the Netherlands. The report authors write, of the Netherlands policy, “further analyses of the cases of ending of life without an explicit request show that these concern nearly always patients who are very close to death, are incompetent but with whom the hastening of death has been discussed earlier in the disease trajectory and/or with their relatives, and for whom opioids were used to end life.”

Canada announced in February that it is again delaying a controversial expansion to its medical assistance in dying program for people who have a mental illness – a practice that is not permitted or proposed in any US right-to-die legislation.

Physician-assisted death has been legal in parts of the United States for more than 25 years. A 2022 review found that the roughly 5,300 patients who have died from medically assisted death in places where it is legal tend to be older, white, educated, and diagnosed with cancer. About a third of people prescribed medications to hasten death ultimately don’t use them.

Comerford, who co-sponsored the Massachusetts bill, said it has been retooled over the years to account for concerns of abuse or possible coercion.

“The End of Life Options Act offers a compassion option — to allow mentally-capable patients with terminal diagnoses to choose a peaceful, humane death with dignity,” Comerford said in a statement. “At the same time, the legislation establishes rigorous safeguards for patients and physicians to follow in order to protect vulnerable people from coercion.”

O’Day told the Globe , responding to O’Malley’s arguments, that he has a 40-year-old son with cerebral palsy and found the cardinal’s case against the bill to be offensive.

“I am not going to be involved in engaging with a piece of legislation that I feel in any way, shape, or form would put that kid at risk,” he said. “That continues to really be their focus on this, focusing on scenarios that have been proven to be unfounded.”

A recent review of arguments for and against medical aid in dying by Columbia University’s Professor David Hoffman and Emily Beer notes that there have been no documented instances of coercion since Oregon legalized the practice in 1997. They also point to the 2022 review showing the the population of those seeking medical aid in dying skews toward better-educated white patients suffering from cancer, writing that the data raise “a converse concern” to fears that those with fewer resources will be pressured to seek this option. Medical aid in dying, they write, “may, inequitably, not be readily available to less privileged populations or those with a diagnosis other than cancer.”

Neighboring Vermont, which has a right-to-die bill that served as model for the Massachusetts bill, last year began to allow residents of other states to end their lives there if they meet certain requirements.

The legislation requires that a patient be capable of making and communicating their health care decision to a physician, and make two requests orally to the physician over a certain timeframe. A written request must then be signed in the presence of two or more witnesses without a stake in the death, who must sign and affirm that patients appeared to understand the nature of the document and were free from duress or undue influence.

Both Vermont’s law and the Massachusetts bill require that a patient undergo counseling, be able to ingest the medication themselves, and have a diagnosis expected to cause death within six months. No health provider or pharmacist is required to participate.

Miley has the sign-off from her oncologist and has two doctors in Vermont lined up, “and that’s all we can do for now,” she wrote. “When my treatment inevitably fails and I get within six months of the end of my life, we will take next steps to arrange for the final medication in Vermont.”

Some of the bill’s steeliest Senate advocates – Comerford and Eldridge – say their backing for medical aid in dying was bolstered by watching the slow decline of those close to them.

Comerford had an aunt who ultimately chose to stop eating to hasten her death. Eldridge said he transitioned from supporter to full-throated advocate of the legislation six or seven years ago, when one of his parents’ best friends was diagnosed with terminal breast cancer. They had the means to move Vermont, “where she could end life on her own terms, without pain, and with dignity,” he said.

The Massachusetts bill would have the strictest protections in the country if passed, Comerford said, incorporating feedback from constituents, lawmakers, and disability rights advocates. She said it seems like Beacon Hill “is at a real precipice moment.”

“I feel like this bill has been scrubbed from every angle, and that’s as it should be, because we’re talking about life and death here,” Comerford said. “We should do the most pristine, thorough work on every piece of legislation, but especially on this. And I do think this bill is ready to move. It’s ready to be brought to the floor for colleagues to consider it, and that’s because legislators and constituents have weighed in so profoundly and thoroughly on this bill.”

House Speaker Ron Mariano and Senate President Karen Spilka, the ultimate gatekeepers for major legislation in their respective branches, have been coy about where they stand since the bill was reintroduced.

That means it’s unclear whether this aid-in-dying version will advance in the crush of legislation before lawmakers in the final six weeks before the two-year legislative ends on July 31. If it doesn’t, advocates will have to restart their effort once more in January when a new term begins.

Miley thinks the law will pass “eventually,” but she has been in the advocacy world too long to think that even speedy passage would mean the law takes effect in time for her to avail herself in Massachusetts.

“It feels ridiculous to do this,” she wrote of her voyage to Vermont, “like I’m a medical refugee having to be driven (and dragging my loved ones) to another state to exercise bodily autonomy.”

This article first appeared on CommonWealth Beacon and is republished here under a Creative Commons license.

The post Seeking a right to medical aid in dying in Massachusetts appeared first on Rhode Island Current .